#627 After Dark: Male Disordered Eating

Casey has type 1 diabetes and battles disordered eating.

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DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.

Scott Benner 0:00
Hello friends, 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

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#626 Who Cares Why?

Maggie has a child with type 1 and another child with 3 autoantibodies.

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DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.

Scott Benner 0:00
Hello friends, and welcome to episode 626 of the Juicebox Podcast.

Maggie is the mother of a child with type one diabetes and another child who has antibodies for type one. Today we're going to talk to her about her family, her story, her hopes and dreams, her struggles. And her triumphs. I'm just kidding. We're just going to chat. I don't really remember we talked about but but that sounded great. In 1914, Maggie was born in the weird world of type one. Parenting she, she had a deep enough voice even enough to make sense, right? Maggie was born in a log cabin in the middle of winter with no electricity and no hope. But she climbed out only to later have children. Who would one day have type one diabetes, but that did not thord Maggie, Maggie did not give up. She didn't blink an eye. See? I mean, anything in a deep voice really sounds important. Please remember while you're listening today that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a fish physician. Doctor before you know what I'm talking about become a Bolus. Just talk to your doctor before you make changes to your health care plan. This episode of The Juicebox Podcast is sponsored by Who do I want to be sponsored by today? It's my choice. Really? I can do whatever I want. Huh? Huh, no, no. Yeah. This episode of The Juicebox Podcast is sponsored by the Dexcom G six continuous glucose monitoring system. Go to dexcom.com Ford slash juice box to say hello to Dexcom. The podcast is also sponsored by Omni pod makers of the Omni pod dash, and the forthcoming Omni pod five. Learn more later today in the episode about Omni pod, their promise and so much more. Head over to Omni pod.com forward slash juice box to get started today with the Omni pod dash.

Maggie 2:27
I'm Maggie and I live in Gilbert, Arizona. And I'm a nurse and I have a newly diagnosed son with type one who just turned eight. And we're waiting on my oldest son who's 10 to be diagnosed.

Scott Benner 2:44
Oh, hold on. Why did Why do you think the second is going to be diagnosed?

Maggie 2:49
Well, we did the whole trial net thing. He came back with two positive antibodies. And then we did further testing. He came back with three positive then.

Scott Benner 2:59
So it's progressing? It seems.

Maggie 3:02
Yeah, yeah, it's slowly progressing.

Scott Benner 3:05
What are they? So what will they do for you? What will trial not be able to help you with?

Maggie 3:11
So trial net really couldn't do anything, honestly, like, they called me on a, I don't know, back in March or April, told me my son had two positive antibodies. But due to COVID. There was nothing they could do to further do any testing, at least here in Phoenix. And they said they'd fly us out to California to do further testing. But like, we're gonna fly all the way to California just for an A one C and a glucose tolerance test. So we did not want to do that because I have two other kids, you know, at home. And I actually ended up calling my pediatrician here. And she arranged getting us into the hospital and doing further because she apparently was affiliated with trial net before COVID. Oh, yeah, she got us in and did further testing for us.

Scott Benner 4:07
Now, are there trials that your son can get into?

Maggie 4:12
No, because he failed the glucose tolerance test if he would have passed it, and they would have considered it stage one than he could have gotten on one of their drugs.

Scott Benner 4:24
Okay, so people who, alright, so if you're in stage one that's early enough for their drug trials?

Maggie 4:32
Yeah. Where you're, you have the antibodies, but you can pass the glucose tolerance test. So you're not quite, you know, starting to your pancreas is still working pretty well.

Scott Benner 4:43
So okay, so that, I guess, obviously, there's nothing you could have done because I'm assuming you only knew because of your first son, your other son's diagnosis. Absolutely. Yeah. Okay. But I guess the idea is for other people, the earlier you find out about things, the more you may be eligible Due to try to slow progression those things. Yeah, exactly. I'm sorry. Wasn't in time for your son.

Maggie 5:07
I know why I'm hoping he can maybe get on that. Oh, other one that I can never pronounce the name that was supposed to be FDA approved.

Scott Benner 5:14
Oh, that there there seemed like they're having it's a slow down getting it through that to me. Yeah.

Maggie 5:22
Yeah, yeah, that one? Yeah,

Scott Benner 5:23
I don't every time I say it I'm not sure I'm saying it correctly.

Maggie 5:26
Yeah. I have no idea either.

Scott Benner 5:29
Well, how long ago was your, your son diagnosed?

Maggie 5:34
He was diagnosed two days before Halloween last year. So October of 2020.

Scott Benner 5:40
Oh, so almost a year now.

Maggie 5:43
Yeah, coming up on a year now.

Scott Benner 5:45
Nothing in your background suggested something like this might happen.

Maggie 5:49
No, nothing doesn't run on either side of our families, nor does autoimmune. My father has type two but

Scott Benner 5:58
yeah, no, like celiac, no thyroid, stuff like that.

Maggie 6:04
No, nothing at all. The only thing weird is my husband like he gets really weird viruses. So I don't know if that triggered anything.

Scott Benner 6:12
Your husband gets really weird viruses.

Maggie 6:15
Yeah. Like when he was a kid. He had like scarlet fever. And, you know, all the weird stuff that people don't get anymore. He had encephalitis and meningitis.

Scott Benner 6:26
So it's like he said, a western film like, yeah,

Maggie 6:30
exactly. So he gets some really weird stuff. That's the only thing we can think of. But it's interesting. No, no other autoimmune or anything else.

Scott Benner 6:38
I'm adding two things to my question list now. So you don't have to answer any bipolar in the family. Or pay bipolar? Yeah. We're pancreatic cancer.

Maggie 6:48
No, pancreatic cancer as far as bipolar. I mean, I definitely probably have like, like relatives, not like not like my mom or dad or any close relatives, but I have like cousins and stuff. Possibly. Mm hmm.

Scott Benner 7:03
Okay, that's all I'm I'm building my anecdotal list. I'm actually this week I'm gonna go to I have a meeting with the he won the exchange. And yeah, I'm gonna tell them like, I've now heard enough. People say some of these things. Like I hope they add these to their questions. Because that's cool. Yeah. Because I mean, how many times is someone going to come on here and be like, Oh, I'm bipolar. And I have type one or my, my mom has pancreatic cancer, like pancreatic cancer is not that common. No, not at all. And so many times I hear like, oh, yeah, my grandmother had pancreas. I'm like, man, what is going on? Like, there's some sort of weird, some sort of relation? Yeah, that I can't see. Because I'm stupid. But I can hear it enough to think like, somebody should pay attention to this. You know what I mean?

Maggie 7:49
Yeah, exactly. And you're hearing it more than everybody else. I'm

Scott Benner 7:52
sure I get to talk to a lot of varied people. So yeah, I'm gonna bring it up. They'll probably be like, please stop thinking so much. And just ask people to sign up to the exchange. will say, Oh, that's hilarious. Maybe not. We'll find out. Wow, how long have you been married?

Maggie 8:11
Technically, we've only been married for two years, but we've been together like 11 years.

Scott Benner 8:16
All these kids. And I feel I have counted three there with your husband. Yep. Okay. Interesting. Interesting. I like the so you guys just were like, hey, we'll just start a family. And then were you ever thinking of getting married? Are you considering not even doing it? This has nothing to do with diabetes.

Maggie 8:34
We're considering not doing it because I, I got married really young, back in my 20s and got divorced and pretty much swore I would never get married again. And then I met him and we had two kids. And finally, when I got pregnant with my third one, he's like, man, you got to take my last name now. We keep I finally agree. I was like, Well, yeah, you're right. It gets annoying at school to sign different names for the kids and me.

Scott Benner 9:00
So for clarity, Maggie, you got married? For the ease of filling out forms?

Maggie 9:06
Basically, yeah. And insurance. You know,

Scott Benner 9:08
we're not gonna let your husband hear this. Right because he's heartbroken.

Maggie 9:13
Knows he knows we're all good. That and my married last name would be or my married name now is Maggie McGee. It's the most Irish hardest name to say.

Scott Benner 9:28
It's spelled like somebody spelled it wrong. So

Maggie 9:31
exactly. I know. And so it took a long time for me to want to take that name,

Scott Benner 9:37
though. It really does. It looks like we already said where you live, but we're basically telling people how to get to your house now, which I feel badly about, but oh, yeah, think about that. But take out the town when I added it. Because right the last name is like MC he.

Maggie 9:55
Yeah, I know. When we tell people to spell it. We say he Hey,

Scott Benner 10:01
I probably wouldn't have married him either. I see what you're getting. Are you Irish? Or me? Your first name is Maggie. You're Irish, right?

Maggie 10:10
Yeah. My family is like Irish English and then his. He's like Irish and Spanish. So

Scott Benner 10:16
that's the other thing, by the way. Not that this is any great like secret but Scandinavians, Celtic, like, Do you have any idea how many people say like my ancestors are from Ireland when they come on? or England or like it's all very mean, not that anybody can't get type one. But I hear that. Yeah. Unless I'm just reaching in Irish audience which I think the podcast is reaching enough people. I'm not just in one town in Boston, get an amen. So

Maggie 10:46
yeah, no, I've definitely heard it on your podcast. Yeah,

Scott Benner 10:49
it really is. fascinates me. Yeah, there's connections there. Obviously, it I don't know, maybe 300 years ago, some people weren't out in the sun and offer something. I have no idea. But apparently, anyway. So what was it like Amy, what was the start of because he was eight, or he was seven.

Maggie 11:07
Yeah, he was seven. When it happen to me. I mean, I'm a nurse. And I saw all the signs and symptoms. And I even told myself several times, like, oh, I only know, children that wet their bed have diabetes, but I was just in denial. Because, you know, school went back last September after COVID. And literally the night before they went back, my son just was throwing just huge tantrums. And that was the first night he wet the bed. And he's never done that even as a toddler. And I just kind of chalked it up to behavior wise, because he just didn't like the change of having to go back to school being off so long. And then that was in September never happened again. And we all went to Oregon like mid October. And the entire plane ride in the airport. And everything. I mean, he was just downing water like he couldn't get enough. But we thought he was bored because we had layovers, and he kept wanting to go to the water fountain, you know, to get water. So with, you know, looking back now the entire vacation, he, you know, peed every five minutes and was down in water. And he was starving. And he's not a kid that eats a lot. So all the signs were there. And we came home from our trip. And I actually, he threw some more tantrums, and then he wet the bed again. And this was like a month and a half later. So it was only like once or twice in between there. And I made him an appointment with his pediatrician because I just thought to myself, it's either diabetes or behavioral. And then my husband and I, we actually did keto, like, I don't know, years ago. And I happen to find the old keto strips that we had that we would pee on to see if we are in ketosis. And they were like six years old, but me and my husband peed on one. And then I made him pee online and it instantly turned like purple. So took him over to urgent care just to get a finger stick and it wouldn't read and then we went to the ER from there.

Scott Benner 13:14
He didn't have to go back to schools as quickly as everybody else. That's TR, G's. i It's interesting. The path you found to figuring it out too. Yeah, yeah. I mean, it's your background, right? You were like, Oh, I can get these strips. And? And that, yeah,

Maggie 13:32
yeah. So it was my background, but a lot of it. You know, my husband kept saying things and I just was like, whatever in denial. He's like, you know, he's really losing weight, and he looks sick. And I just kept thinking he was fine.

Scott Benner 13:45
You were like, Listen, buddy, you get a real last name. And I'll start listening

Maggie 13:48
to you. Exactly. Right.

Scott Benner 13:51
I can't take that seriously with that last name. Well, yeah, so did you not want to see it? Do you look back and diagnose yourself in that moment, or?

Maggie 14:02
Yeah, I don't. I just, I just was convinced that you know, it was more of a hereditary thing. And that was just not something that ran in our family. And he's always been our you, I guess you would say difficult one. So his tantrums and weirdness, like didn't really throw me off. And honestly, all my kids drink a ton because we're just a big we live in Arizona. We drink water, like it's going out of style. So it just wasn't hitting me. Until, you know, I actually took a look to like, Oh, you're right, you know, looking back at pictures and like, he's definitely lost weight. Something's going on.

Scott Benner 14:42
That sucks. Now. I'm sorry. Yeah. I had another question. It just fell out of my head. I'll find it. Hold on. Wait, you know what's wrong? I have this other thought that's in the way. You You mentioned that he went to the like, he peed the bed. And I was like, I want Yeah, and then it made me wonder where the term pissed off comes from. That's random. And I do not need to be diagnosed with ADHD by any of your emails. Okay, but okay, I just, I was like, Oh, I wonder where that comes from? And I knew I don't know. And I haven't. It's just stuck in my head now wondering where it comes from. I and then, you know, you kind of went the the stripper out and there was like, you know, peeing on the servers more peeing. Yeah, just kept feeding

Maggie 15:27
like this all is we're going in circles here.

Scott Benner 15:30
Like, we can't just call this episode like, pissy hee hee or something like that. But I'm very close to trying to figure it out.

Maggie 15:38
But no, I can't wait to see what you mean.

Scott Benner 15:41
I'm gonna have to go back over it before I know for certain, but it just it really did get stuck in my head and then it made me lose my real question. I'm embarrassed now. But okay, so he's diagnosed, you leave the hospital with what kind of gear?

Maggie 15:58
Oh, so that was kind of the crappy part. So I I used to be an ER nurse and you know, so I took him actually to the ER, I used to work at granted. The ER used to work out there was a peds side and adult side and I worked on the adult side, but I still knew some of the pede peds nurses, and we got there and they took us right back because, you know, his blood sugar wasn't registering on their glucometer either. But he wasn't in DK thankfully. But I do you feel like I got a little shafted because I was a nurse. They were like, well, you know, we're just gonna give him a units Atlantis. He's not in DKA. He was like borderline his blood sugar was like 688 or something. And as a once he was like, 11. And they're like, we're just gonna give them eight units a Lantis and send you home at this point. It's like 1am, two o'clock in the morning and call the endo in the morning and get yourself in there. And I was just like, dumbfounded and floored because I was like, you know, being a nurse. I'm like, I can't take him home and go to sleep with him. But no, glucometer No, nothing. I'm just gonna lay here and freak out the entire time. But that's what they did. They sent me home with eight units. Elena's

Scott Benner 17:19
the old you know what you're doing? Get out? Yep, exactly. So did you know what you were doing?

Maggie 17:25
No, not a clue. I mean, I admit, I've managed DK a lot in the ER, that's no big deal. But definitely an adult's, and most of them were type twos. But I've never, I didn't realize what a difference type one and type two really were. And I've never had to manage it, you know, outside of a emergency situation.

Scott Benner 17:47
In the last year of managing with type one, have you found your nursing to be helpful or a hindrance?

Maggie 17:58
Both it definitely. It's, I mean, it's definitely good because I have I have knowledge, and I know, you know, I can jump on things before he, you know, when he gets sick, I know what to look for sooner. But at the same time, I just, I don't know, I have the mom nurse brain too. So I ignore a lot of things. My husband would probably tell you that I think I know it all because I'm a nurse when it comes to his diabetes, so that gets in the way sometimes to

Scott Benner 18:33
do you know, are you usually right? Or do you find yourself just like, kind of mindlessly? And without any real reason? trusting yourself when you don't

Maggie 18:44
there? There are times when I know like I know what needs to be done or what I'm seeing. I can't like think of examples right now. But then there's other times where I'm just totally friggin winging it. And I have no idea what I'm doing. How and I mean, that would be pretty obvious if you looked at his a onesies and numbers.

Scott Benner 19:05
How I was gonna ask you, so first of all, I was about to, like what outcomes look like, but then it occurred to me that I want to hear Michael Jackson sing your last name. Then he realized he was dead. And I was like, well, we can't make that happen. Do you know why I'm saying? No, I have to figure out there's one song where he goes, gets really high and he goes he and I just like to get him to sign I need a Michael Jackson impersonator on this show immediately.

Maggie 19:37
Yeah, what song is that? It's gonna drive me nuts. Like one of his most famous one

Scott Benner 19:50
the way you make me feel i Which one is that? Is that is that? I think so. That's the one I'm thinking of.

Maggie 19:56
Okay, we're just gonna take you're probably right. I would never was a huge Michael J. Some fan but I definitely know all songs

Scott Benner 20:02
that I am either it just, it is called the way you make me feel. And there's a hee hee in it. And I'm standing by everything that I've just said.

Maggie 20:11
No, I believe you I know what you're talking about.

Scott Benner 20:14
You really shouldn't believe me. I mean, that's a mistake, I think Arden episode that everybody's probably should figure out. Okay, boom, boom, boom, the candidate today, okay, Nurse brain, trusting yourself. And maybe you shouldn't. So what are your outcomes like in the first year?

Maggie 20:33
Um, honestly, I like to blame everything on the Omnipod. But we definitely aren't where I want us to be. We just had our last endo appointment two weeks ago, and he was still at a 7.2 which I knew that was going to happen. We just come out of summer. And so you know, he spent summer break non stop snacking and eating. If I could get the damn kid to Pre-Bolus we would be fine. Yeah, but that's a real issue for us. And we're not, we can't loop there wouldn't

Scott Benner 21:07
help. You'd have to Pre-Bolus with loop.

Maggie 21:10
Yeah, exactly. We have a lot. You know, I feel like we have a lot of pod issues. But then sometimes I'm like, is it pod issues? Or is it site issues? Or were you just insulin resistant at times?

Scott Benner 21:24
May I say, if you're not Pre-Bolus In your meals, and I'm not just talking to you now, Maggie, I'll be talking to anybody who's listening. If you're not Pre-Bolus In your meals, I don't really care how you're getting your insulin, it once the food gets ahead of the insulin, you're screwed. Like, absolutely. That's it like so you can't you can't say it's a site, because the site would have worked fine if you would have given the insulin the upper hand in the situation. But once you let the food get ahead of the insulin, now you're chasing the blood sugar. And you think, Well, I'm putting in enough often and what seems like enough in those situations is maybe never enough. And now time is also part of what you need. And, you know, you hear people like Oh, run around or drink water. Like you're now you're like, you're deep into the into your tool belt, like pulling on ideas like well, maybe this will help maybe this will help instead of just Pre-Bolus thing, which would, I'm assuming likely fix the whole thing. I bet if he Pre-Bolus This is a one season the sexes?

Maggie 22:22
Oh, yeah, I 100% agree. And I know that and I'm and I've gotten to the point now where I'm trying to bribe them. And now that he's back in school, I'm really hoping because now I can text them, you know, they're on a schedule, so I can get them to Pre-Bolus. But we've been, you know, sometimes we've been we have a lot of issues at night, which is weird, you know, when he has went hours without eating, and his and dead sleep. And you know, I've done the increases. Bailet just like last night, for instance, I think I gave him four units within two hours before I finally just pulled this pot off. And this was at, like, you know, 1am So he had eaten since 8pm. The night before?

Scott Benner 23:06
That seems like that could be easy growing as you gained weight or getting taller or anything like that.

Maggie 23:12
You know, he's he's a slow grower, but yeah, I mean, he has gained a little weight.

Scott Benner 23:18
So growth, you know, happens overnight.

Maggie 23:21
Really, okay. Cuz I'm like, why is this all this it's just been like the last three nights and I listened to you guys, after three days, I'm gonna increase his Basal tonight. After we just got done, we actually decreases Basal last week, because he was having lows all night.

Scott Benner 23:37
Well, so that's the weird thing with the growth hormone stuff. Okay, kids are growing, you're making me remember this, I'm gonna have a flashback that's unpleasant, but you it feels like, as soon as that the key to it, I hate to say this, the key to it is not to wait. So the problem is, is that by the time you find a pattern, usually whatever is making the pattern happen, stops, and then or, you know, takes a break or whatever, however you want to put it. So if you are fighting a hormone thing, and then suddenly start getting low again, like don't wait three days, like I go right away from it. And then if, and if the resistance comes back, or, and I don't even think of it as resistance. It's if the hormone impact comes back, jump right back on it again. I mean, and you're on a pump so you can just change you don't have to you don't have to It's not like you have to wait till the next morning to inject your you're slow acting or anything like that. So I say just stay very flexible and and meet needs as they happen. I don't think so. You

Maggie 24:42
think you think growth hormone would cause like that much? I mean, because normally, you know, a half a unit to a unit will drop him but he never never even dropped a point.

Scott Benner 24:54
Yeah, I would say yes. I mean, that's, you know, keeping in mind that I'm a moron and not a doctor. Yeah. I would say, I would say that based on my experience, the amount of insulin that I have found myself using in the middle of the night for Arden at times while she was growing was surprisingly, a lot more than I thought it was going to be. And it's not a fun time, the growth hormone.

Maggie 25:18
Yeah, I was just like convinced that his legs just have scar tissue or tunneling or something.

Scott Benner 25:23
I would still I would say to most people, while those things can happen scar tissue in a year seems unlikely. Today, I have an episode on timeline I just haven't put up yet. Oh, not that common. Okay, you know, like, I would say, don't look too far for problems. Like, okay, the most common sense, reasonable solution is likely the right one, or at least the right place to start. I, I think that it's not uncommon for what you're describing, like, you know, there's something wrong with my site, there's the insight, the one that always gets me is the insulins bad? Like when 2021 Everyone has a refrigerator? And people like did your insulin go bad? I'm like, that's your first thought. Like, probably not, you know what I mean? Like, like, just go with what makes sense. And what makes sense is, there's an impact happening in the body that needs more or less insulin, and just meet that need. Now, once you've done that, you know, look at other things, and it will take, I don't know how much time it's gonna take you. But you can see when a pump isn't gonna, when it's done, like when a site's done, you know, it doesn't matter which pump you're using, like, there are moments where you just like this site is not, it's just not good anymore. It's not gonna work anymore. And Arden had it the other day, like, she was on like, a 48 hour like carb bender. They're, like, like, and finally I was just like, hey, we got changed your site. You've just we've just put way too much insulin through the site in the last 48 hours, and it's just not reacting anymore. So let's just change it and go and, and we did that. And but when it went bad, her blood sugar. Well, when it went bad, it went bad after a bagel. So her blood sugar, she comes home from something and she's like, look how well I did with my bagel. And I was like, I see 140 diagnol up and she goes, No, I did so good with it. She's like, I eat that bagel two hours ago. And she's all like, I had this. And I was like, Alright, and so we looked and I was like, you can try Bolus. And again, maybe you missed. And she's like, I really don't think I didn't use enough insulin. So we waited a little longer, and her blood sugar started running. And we made one more Bolus. And that Bolus didn't stop the run. And so we bailed on the pump. But that was based on. Like I said, we knew we had run a lot of insulin through that in the 48 hours prior there was Chinese food. And you know, when that happens, like suddenly you look up like three days later, and you're like, I've not eaten one good thing in the last three days. Oh, yeah. Yeah. You're like, Yes, I do. That was the role she?

Maggie 27:55
Yeah. See, I'm still like, Oh, I'm always going back and forth. Like, is it the pump? Or, you know, yeah, is it that he you know, he obviously didn't Pre-Bolus For sure. But I just get, I don't know what it is. I always go to the pump, and port for Omnipod. They probably just think I Suck it, inserting them or something. So I'm always calling like it just quit working.

Scott Benner 28:17
Yeah, it's tough. Because in the beginning, I get that feeling. Like, especially when you like, probably, if you came out of any kind of a honeymoon. Did you have any honeymoon in the beginning?

Maggie 28:29
Yeah, for sure. Yeah, I'm not even convinced that we're not still in and out of that.

Scott Benner 28:34
So that could be it too. And so, listen, if I could give you one piece of advice over 30 minutes, I would say stop thinking it's the pump site and start thinking it's the amount of insulin. Okay, that would be my best end. To find a way to bribe the kid into Pre-Bolus.

Maggie 28:51
Yeah, that's what I'm working on, man. I'm totally cuz I know if we could do that. Our world would be it would change for sure.

Scott Benner 29:00
It changes. So I was gonna say earlier. Can I take a sip of water? Yeah. Like asking permission if I can have water?

Maggie 29:10
Absolutely.

Scott Benner 29:13
I just got I don't know why, like you came off very paternal. All of a sudden, I was like, now I need. No anyway. One thing I was thinking earlier, that I want to say to you while you were talking was try not to think about it as segments of time. This is like kind of, like, a little heavy, maybe but I don't consider diabetes. anymore to be like tonight. Last night tomorrow this afternoon, overnight during the day, I think of it is one continuous non stop log flume ride. Like I'm just on that path. And we're never getting off this thing. We're just going to go around corners and bob up and down and get splashed and this is never going to stop. I don't think about it. Don't think about it like, oh, look what keeps happening every night at this time, like I do, like, don't get me wrong like I do if I see a pattern a certain time, I think of a pattern as being at a certain time. But I think that once your settings, once your settings are really rock solid, and meaning Basal, and you know, meal insulin, and you're definitely Pre-Bolus thing, once those things are happening it's a it's such a in the moment, it's always in the moment decisions like you're always making, like decisions right now for later. And you're just like not getting off this ride. Like it just keeps going and looking back sometimes is is a hinderance. And that's really kind of like Wavy Gravy and hippie dippie thinking, but like, I try to step back so far, that I see the really, really, really big picture about what's happening. And in my opinion, the big picture about what's happening to everybody is timing and amount. And once you cause a problem by missing out on that. Now you're just, you're off the timeline now. Like now, yeah, time's running ahead of you, and you're somewhere else and you you need to sync back up again. Which is why I tell people like crush it, catch it start over again. Like don't don't keep chasing it because only really like, like I can, I can chase and win. But chasing and winnings hard for most people until you've really been around the insulin for a really long time. Yeah. Does that make sense to you? Because a lot of made up words in there. So tell me no,

Maggie 31:40
it makes perfect sense to me honestly.

Scott Benner 31:51
The Omni pod insulin pump has been in service with my daughter since she was four years old, and she will turn 18 this summer. That is 14 years of wearing an omni pod every day. Why do we make that decision? Well, there's no tubes to get in the way. You're not going to get your tubing caught on doorknobs or drawer handles or anything like that, because there just isn't any tubing. The Omni pod is tubeless. Arden doesn't want to do injections. So with the Omni pod, she doesn't have to. So if you're ready to ditch those daily injections are center tube pump packing. You can try the Omni pod today. It's a tubeless wireless continuous insulin management system. All you have to do is go to Omni pod.com forward slash juice box. See if you're eligible. Actually, on the pod has a 30 day free trial of the Omni pod dash that you may be eligible for you'd be able to find that out at my link. And if you don't want to get started today, because you're thinking, you know Scott on the pod just they just said the Omni pod fives coming out. I'm gonna wait. Well, you really don't have to wait. You can get started with the Omni pod dash right now today. And then when the Omni pod five is available, and you are eligible through your insurance, you can just switch from your Omni pod dash to the five that's on the pods promise. You know what they call that? The Omni pod promise. It's you know, it's a pretty basic name. But it's a rock solid promise on the pod.com Ford slash juice box head over there. Now get started. Just start stretching out your little typing fingers while you're listening and then as soon as you're done listening you're typing away Omni pod.com forward slash juicebox look good Scott's right just click click click click all done

was like a mini dance break there? Did you like it but then it didn't live in tainted anything. I don't know. I don't remember the music Dexcom dexcom.com forward slash juice box. Get yourself a Dexcom G six continuous glucose monitor today. See your blood sugar in real time. I will tell you what my daughter's blood sugar is now. I don't know what it is. But I'm going to open my phone. I've opened the Dexcom app and her blood sugar is drumroll please. 78. And it's stable. Actually, I can see at a glance her last three hours or last six hours for last 12 hours. Oh her last 24 hours. Not bad, my friends. Not bad law. I have time here to go over the last 12 hours. MID morning till two o'clock in the afternoon ish. blood sugar's in the 80 to 90 range very stable. Around 1230 Excuse me around 230 A little uppity up up up. Right around 120 We make a choice to say no no, no to up up up a little more insulin. level that out for o'clock starts coming back down again, we're more in the 105 range. She has a big meal we don't quite get the Bolus in time for and she pops up to 131 35. No matter, we add more insulin, we're just looking at our data and making good decisions. That extra insulin was for fat and protein in the meal that she had today, it was a secondary Bolus to the first Bolus. I figured out how to do that by looking at this data. And you can too, and now it's seven o'clock 78 blood sugar. Hey, these are my results. And yours may vary. But if you want a great shot at it dexcom.com forward slash juice box get yourself a continuous glucose monitor. If you're using insulin, they are I mean, I think their job one, two, the first step, getting to CGM getting yourself a good solid pump like the Omni pod. This is the way to go. I ran out of music there. But I was feeling all like, you know, serious. So I kept talking back to Maggie.

Maggie 36:01
And even you're like you always say, let go of the why?

Scott Benner 36:05
Yeah, it's a big, I think it's a big, big help. Like, who cares? Why do it? And yeah, looking for three days worth of patterns before like, I saw someone online the other day. And somebody said, like, how long do I have to wait after I make a Basal change to see if it's gonna work? And somebody was like three days? And I was like, you know, okay, yeah, I guess so. But I, you know, I prefer to turn it up until I get what I want. And if that ends up being too much, then back away from it. But the incremental like, let me turn it a little bit here and a little bit here. And then we'll wait and see what happens, you ignore the fact that there are all these other variables like growth hormone, or quality of the food you're eating, or, you know, hydration and blah, blah, blah, all this stuff, you're ignoring that you're not adjusting everything at the same time. Yeah. And so to me, I'm just like, I don't know, to me, it feels like I'm putting out a fire, like, I just turn the hose way up until the flame comes down to where I want it. And then I adjust the hose. So the flame stays where I want it to be. And that's how I think of the blood sugar as sort of this thing that I'm pushing down on from the top with Basal. And when I get it at a height where I want it, then that's the right amount of force. And I don't know why you have to wait three days to make those decisions. That's all.

Maggie 37:28
Wait to see a pattern.

Scott Benner 37:31
You know, I see a pattern. Great. But you'll be crazy. By the time you find those patterns. Magic.

Maggie 37:37
I know I already am slightly going crazy. Literally like two in the morning. I just kept thinking to myself. Yeah, you know, Scott wouldn't be saying why? Why am I up right now and trying to figure out why he's not coming down. Like just go and do something about it.

Scott Benner 37:53
Yeah, I don't even care why anymore. I'm just like, hit it. Hit that then do this. And Arden was one we came out of low. So yes to the story I told you about switching the pump actually happened yesterday. And then yeah, my brother's here from out of state. And we all went to this bar to get dinner that we used to eat out together before he abandoned us and moved away. And he's an adult, he can leave if he wants to. So we all went back there took my mom but my mom's birthday is tomorrow. Surprise my mom by bringing my brother in from out of state. And now all of a sudden you're in a bar. And Arden is like having like nachos like cheese steak nachos, try to imagine that it's nachos, but with a cheese steak on top of it. And so it's a lot of grease and a lot of meat, which is going to be a lot of protein and a lot of fat, and then the carbs from the chips. And there's cheese that's going to slow down the digestion and then the french fries, you know, like all this stuff happening. And three hours later, we've like, shut her budget are still like really great. And so my niece and nephew aren't from around here. And we took them to get water ice, which is something they kind of can't get where they live. And now Arden's eating like a water ice. And she's like, I don't think I'm gonna eat much of this. And I was like, okay, whatever. I was like Bolus, like 20 carbs, and she did 20 And she got a little rise. And so we threw in like 10 more and it held on for a while. And then finally, probably four or five hours after we had the meal. She started getting a rise up again. Now, I don't think it's the water ice because that's simple sugar and we kind of we think we squashed out at the time. This is probably fat from the French fries, something like that. And I wanted to go to bed. It was late, and I didn't want it to be high all night. So I just went in there and you know, she was asleep already and I hit her with like Basal plus one. So I did an hour's worth of her Basal plus a unit. And then I Okay, and I just went to bed. And yeah, I don't even know what happened. If I'm being honest, I can log on. I don't have to pull up here. So that would have been last night. Around 12 Okay, so she's heading up 124 145 It made it all the way to 155. At that I started to come down, come down, come down. One of the five 111 tried to rise again, it got to 140 We hit it one more time. And then she was yeah, she's under 100 About an hour later. And by one or by three o'clock in the morning, she was riding between 185 all night long.

Maggie 40:44
How did you have to go do that? Or doesn't like the looping do that for you?

Scott Benner 40:48
The loop tried. But the loop doesn't know about fat and protein and all that. That's the really horrible things are Nate at that bar. Yeah. So oh, I gave it some help. So I basically translated the fat and protein in my head to carbs and then just added it as carbs. That makes sense. Gotcha. Yeah. But those are the things you have to do if I don't do those things last night. I think her blood sugar goes to 250 to 60 and stays there probably for four or five hours at least.

Maggie 41:22
Oh, yeah. For sure.

Scott Benner 41:26
And I don't have time in those moments to be like, Yeah, I wonder what's going on here. I'm just like, yeah, fat, more food. Crappy. Yeah, you know, blah, blah, blah. But you do you think you'd be like, Oh, it's going up for no reason?

Maggie 41:37
No, like, I listen to your guys's fat and, like, I don't know if it's weird that we're aren't seeing that yet with him. I haven't noticed really, you know, even thinking about last night. I mean, he had a goldfish for a snack. And then you know, his dinner was like a half a grilled cheese at like 4pm 5pm and hate it and start raising till I don't know two in the morning and I just to me, I'm like, well, there was pretty much no protein a little bit and the cheese. And the cheese had a little bit of fat. Goldfish had no fat because I still I do I try to think of the fat and protein. The only thing I see. For us with him so far is you know, obviously cereal and fat. That will keep him up for hours and hours. But so far, I haven't seen like, you know if he has a steak or something like that with dinner. I haven't seen that later rise yet.

Scott Benner 42:34
You could be bolusing well enough to catch a protein rise from a steak and a half a grilled cheese sandwich is a little bit of cheese. But I agree. I'd have to agree with you. I don't think dinner at like five o'clock is a rise at 2am I think that's yeah, that to me seems like growth hormone.

Maggie 42:51
Okay, yeah, yeah. Cuz that's been like the last few nights and and I've changed as pod twice thinking it was the pod and increases Basal and just gave way more insulin than I would ever give him and just not even budge.

Scott Benner 43:07
See, the other thing you when you change the site, you also kind of reset to like sites are not great in the first couple of hours. Yeah, for some people. So if you are fighting with the carbs or the growth hormone, and then you remove the pod, you're you're putting yourself in a deeper hole by starting over with a new site as well. Like, yeah, really? So I'll say this, if you really think it's a pod in a site in that moment, why don't you inject the next correction? Because if, if you're not getting what you want out of your insulin pump site, and you inject you'll get it from the injection. Right.

Maggie 43:49
And I and I always think to myself to do that. But then I always trick myself in my head like, well, if it does come down, I'm going to wonder if it was the pot or the injection again, even though I know it would have been the injection

Scott Benner 44:01
of a little bit of a voice in your head too. That's nice. Okay,

Maggie 44:04
all the time. All the time.

Scott Benner 44:07
You got to try to see Yeah, the only way you're going to know is to do it a couple of times. And yeah, because and also, you'll be teaching yourself what a bad site looks like, too. Because yeah,

Maggie 44:17
because first of all, definitely, I mean, he went on the Omni pod and February.

Scott Benner 44:22
Oh, yeah. You're very new with this. Okay. Yeah. Yeah. Very new. You'll be fine. It's coming. Just, yeah, keep going. Keep doing what you're doing. You know, try to take a little longer look at things sometimes. But other than that, I don't see. I mean, a one C, would you say 677? To seven to sorry, seven to eight. He hasn't had diabetes for a year yet. You just started a pump a handful of months ago. Yeah. Where does he sit? When he when he's away from food and away from meal insulin. Where does he sit stable when he sits stable or does he not?

Maggie 45:00
Well, we've just readjusted Basal again. We're always adjusting them, but honestly, the kid never goes longer than two hours about eating something. But he's still kind of that's why I'm not convinced he still not honeymooning because, you know, one day he can sit. I don't know, in the lower hundreds. Sometimes they'll sit at 90 Just fine. But usually when he hits the 90s, he's eventually going to hit 80 and then just keep going down. You know, like yesterday, I think it was three hours between breakfast and a snack. And he just dwindled down into the 80s and sat in the 80s for a little bit. But then we eventually had to have him eat a few Skittles, but not much.

Scott Benner 45:43
What about overnight? When there's no just

Maggie 45:45
when he overnight when he's not having a rise? He's sitting usually between, I don't know. 110 to 150 it just depends. Which is higher than I would like him to sit.

Scott Benner 46:00
That's fine. I'm trying to think 110 to 150 is a big window.

Maggie 46:04
Yeah, like one night, he could be 110 or 100 all night and just beautiful. The very next night, no different food or anything and hope you 150 all night.

Scott Benner 46:15
So maybe these these are like, just guessing, but maybe there is some honeymooning left. And when you don't have the honeymooning helping you, your Basal is keeping you at 150. And when you do have the honeymoon, helping you the Basal is keeping you at 110, which is an indication that at some point that a Basal rates not nearly enough. Yeah. How can I ask how much he weighs?

Maggie 46:44
He is let's see. I think he was like 58 pounds. What's last time we went?

Scott Benner 46:50
You know, what is Basal? Is it an hour?

Maggie 46:54
Well, during the day, he's at point three. And then, at night, they did have him at point one, five, I put him back up 2.2 Right now, I change it a lot though.

Scott Benner 47:11
Thinking, so we're having

Maggie 47:13
lows for a while at night. So I put him back down to 1.5 or point one, five, and then I put them back up 2.2. And then the past few nights I've been given them, or I've just been doing like 100% increase for an hour or two just to try to get them down. Yeah.

Scott Benner 47:27
So I don't obviously I do not have nearly enough information to like, say anything meaningful to you. But can we speak next essentially for a second? Okay. I think it's weird. That is Basal overnight is so much less than during the day.

Maggie 47:47
Yeah, his he, he almost never goes low during the day. And I mean, we've just increased his daytime Basal. When we went to the Endo, she actually she increases Basal and then decreased his carb ratio.

Scott Benner 48:04
Oh, well, you just did she think she thought he was getting low after meals?

Maggie 48:09
Well, she said she was like, you know, he should be 30% Basal 50% boluses. And that's definitely not where he was. And I just I let her do her thing. Literally the very next day, I changed all his carb ratios back I put them lower. I was like, This doesn't make any sense. So she

Scott Benner 48:31
she wasn't diagnosing anything. She was just moving Basal to Bolus Bolus to Basal

Maggie 48:38
basically, yeah. To get and I think she was a little thrown off to she you could tell she didn't really know what to do. She was just trying to

Scott Benner 48:45
get to this 5050 Number. Yeah, basically, that seems

Maggie 48:49
like that does. To me, that doesn't make sense. Because one thing he is an eight year old kid that eats all day long and most the time it's crap, junk, junk food. So we're given a lot of insulin.

Scott Benner 49:01
So I would like to I like, I like there to be in my mind, the Basal I like the Basal to be as low as possible. Okay, and for it to hold you steady at like 8590. Yeah, in that range. Right. So that may make you have to be more aggressive with meal insulin. Right. Okay. But that's like in my mind, that's the balance. I kind of want. I don't I don't care what the ratio is from Basal to Bolus, like if it's 5050. Like that seems kind of arbitrary to me. Like if what I mean, what if you eat a lot of food, but in a small eating window, like what if you're very curvy for lunch and dinner, but not at breakfast? Then overnight, right, like so. I like the Basal little work and do its own work. I don't like to massive problems with Basal insulin. So I don't want there to be like, I don't want you to be feeding the Basal ever, because I like to see when the food's gone. And when other major impacts are gone, that your blood sugar just wants to sit in that 8090 range and stay there. Yeah. And that to me would be your goal is to is to do that. Also. I mean, if he's point three during the day and 1.5 overnight, I think those are the numbers you said. And he's drifting up overnight, then, I mean, maybe he needs more Basal overnight. To

Maggie 50:36
Yeah, and I just increased that as well. Again, we, like I said, I go back and forth all time because sometimes we'll start going low at night, but I've increased the night time Basal. And it's hard to see as daytime. I mean, like I said, eat all the time, overnight time.

Scott Benner 50:53
Was that I want to before I forget my thought overnight, sometimes he gets low overnight. Does that mean that he drifts low, you fix it and he drifts low again. What does it mean? He drifts low you fix it and it stays up.

Maggie 51:07
He drifts low, we fix it, it stays up.

Scott Benner 51:10
Okay, then that's it. And then that's not Basal then. Okay, because if he kept if you had to keep feeding him to keep him up and the base, pulling him low, pulling them low point low, but if you're having a low, you fix it once and it stays up, then that to me indicates an issue of like a late night snack Bolus, or even maybe your Basal too high in the preceding hours. Before the low, yeah. So even up to two hours. Like if you see a low consistently at one o'clock, you might want to turn your Basal down at like 11pm Yeah, all right.

Maggie 51:46
Okay, that makes sense. Yeah, totally.

Scott Benner 51:51
Cuz I'm swimming trying to like picture your life. I've never seen it. Like just trying to keep everything in my head as straight as I can. I'm sorry. You were I know that. I cut you off. I apologize.

Maggie 52:00
I don't. Oh, yeah. I was just saying that it's hard to know his daytime because, I mean, the only time he might not eat for like three hours in a row will be if he's like playing video games. So here's what I'm gonna sometimes I'll let him play video games for three hours just so he doesn't eat and I can see where his blood sugar goes. Here's I'm not gonna lie.

Scott Benner 52:21
I'm gonna tell you this. I don't think you can understand any of this until you start Pre-Bolus In the meals during the day. Yeah, I know. Because you're probably just creating the first problem right? So for people listening, and I think Maggie, it sounds like you listen enough that you understand what I'm about to say but you eat adult Bolus. food drives up your blood sugar, you throw in a bunch of insulin. The insulin can't overwhelm the food as it's in your system. Ai tries and tries and tries you sit high. Eventually I'm losing my voice Hold on a second

was embarrassing. Sorry, eventually the food digests out of the system leaving behind the unbalanced insulin because you didn't Pre-Bolus blood sugar starts to fall but eat so much you don't really care. So you put in more food restart the unbalancing he gets higher you put the insulin in. I'm dying here Maggie, this is the end Hold on. Oh my god. Um The the the process starts over again. And then it happens again foods in it's causing a high insulin Xin it's in too late. It's fighting, fighting, fighting with the carbs can't overwhelm it food digest leaves, the system comes back down. Does this sound like what happens?

Maggie 53:52
Oh, absolutely. All day long. I mean, so you're

Scott Benner 53:55
now trying to figure out a problem at 1am. That's based on you not Pre-Bolus thing breakfast? Probably yeah, no. So this, by the way, incredibly common. Maggie talked to a lot of people. This is incredibly common. So you cause a problem, the first meal of the day, or even have Basal too low overnight, which comes into the morning too high. And then you don't Pre-Bolus And now boom, we're off to the races. Up, down, up, down, up, down. It's happening more and more because he's eating so much. Eventually, the end of the day comes he stops eating all of this unbalanced insulins left from the last meal drags him low. You start thinking, Oh, he gets low overnight. And that becomes your focus when I'm telling you what the focus should be is Pre-Bolus. And none of this will happen. Yeah.

Maggie 54:48
I wholeheartedly agree with you. I think if we can somehow bribe this kid to Pre-Bolus in our lives will be much easier.

Scott Benner 54:57
You know, in the 70s you could hit him but now I know people understand. I'm kidding. But there's got to be something that although they, I mean, if it was the 70s, you probably would just pull them into a corner be like, listen to me. Oh, hell yes, I would. But instead, we're all evolved. Okay, we know. Right? We figured that out. And so you need to motivate him to Pre-Bolus his meals. Is there anything that's happening to him health wise that he wished was stopped? Like, I mean, does he hate this whole process? Or are you catching it in every spot, so he doesn't really notice it's happening?

Maggie 55:33
He probably could care less. He doesn't complain anymore. Even you know, the site changes or anything. He's just like, whatever. I mean, he gets frustrated sometimes when he's trying to run out the door to a friend's house or something, but he just will go and you know, he'll do his own boluses and everything, but he's entering the Bolus as he's eating the granola bar.

Scott Benner 55:58
Well, with a granola bar, that might not be bad, because that might not hit him right away. Like there are some foods where you don't have food. Is everybody ready for me to contradict myself? After 55 minutes? There are some yeah, there's some foods, you don't have to guess the takes so long for your body to start digesting? So yeah. So you can get away with not Pre-Bolus a granola bar as an example. Because, you know, unless it's all covered in sugar than chocolate, and it's not really a granola bar, but like a real healthy granola bar goes in your stomach.

Maggie 56:28
Oh, now we're talking like Kirkland brand. So I'm sure it's okay. pure sugar.

Scott Benner 56:33
Chocolate, then we still want to Pre-Bolus But listen, I know that's so hard. I don't I you've gotten to the end of my understanding, like, how do you motivate an eight year old to wait 10 minutes before you eat some because we're really only talking about starting with 10 minutes. And just like give me 10 minutes. Money, too young for girls.

Maggie 56:54
I've tried the money thing. And I still, but he's also like, oh, you owe me $1 They Pre-Bolus and his his concept of Pre-Bolus thing is the insulin all going in before he takes a bite. Not waiting. A Pre-Bolus I'm like, no, no, that doesn't count. The only thing that motivates him is video games. So then, that might be our next thing.

Scott Benner 57:16
Right now. I think it's super simple. Tell me to 10 minute Pre-Bolus before every meal. And every minute Pre-Bolus. His is an extra minute of video games. And that way, if he eats five times a day, he can build up 50 minutes of video games. That seems pretty reasonable to me.

Maggie 57:34
He Yeah, that might actually work for him. Honestly.

Scott Benner 57:38
You just have to, because then it'll become you know, the truth is it'll become habit at some point. And you and you'll kind of forget about all this and it won't matter. Like he'll just start Pre-Bolus thing after a while. We'll just get accustomed to it. I mean, I can't wait. Yeah. Like there are times when art and Bolus is and I'm like, you gotta wait. You have to wait. I see unwrapping that thing like just like, wait a little bit. I'm hoping Yeah. Oh, my God, I know, you should have thought of that. 10 minutes ago, and Bolus. And it's not always possible. Like, don't get me wrong, it's not always going to be possible. So when you mess it up, crush it, catch it, start over again, don't chase throughout the day. But at the same time, if you want all this to get much easier, and for you to stop talking to the voices in your head, trying to figure out what's happening at two in the morning. I think that's the that's the first step honestly.

Maggie 58:26
Yeah, I agree. And I just want to Yeah, try to master it before I've got two of them like this.

Scott Benner 58:33
Right? Like, oh my god, yeah, I forgot about that. Oh, how can I ask you? I know we're up on your time a little bit. But

Unknown Speaker 58:43
no, you're fine. What is it?

Scott Benner 58:47
Is it in the back of your head all the time? My kids about to get diabetes? Or do you not think of it because you already have a kid with diabetes? And it doesn't seem as dire as it did the first time?

Maggie 58:55
No, it's they're such opposite kids that it's always in my head because my oldest who is my 10 year old who does not technically have it yet. He's just he's he's a different breed here. First of all, his skin is crazy sensitive, so I don't know how he's gonna wear anything. And then he's just, he's super he's just a sensitive kid period. So you know, even doing fingerprints on him is a very big like, he's got to take a lot of breaths and sit down and contemplate it he analyzes everything. So I just I just worry for him like I feel bad I think about it all the time. Like what he's going to go through and it's going to be a pity party for him. He's very dramatic, I guess put it that way. So people have said I'm going to be Yeah, he's gonna be he's gonna be something different whereas river my middle son who has it he's like, whatever kind of go with the flow kind of kid. He actually didn't care from the beginning. Really?

Scott Benner 59:59
Wow. Maybe we should call them all River and they all could have gone with the flow. That's right. The other ones names not Damn, is it? Because that might have been your fault? Right

Maggie 1:00:09
now? I have a two year old who is we're hoping he doesn't eventually.

Scott Benner 1:00:16
Yeah, test. I was wondering have you ever taken a little sliver of like adhesive from the potter Dexcom and stuck it on your other son to see how his skin reacts to it?

Maggie 1:00:25
I have not the only way I know that his skin was really bad was when they when they did the trial net testing, he had to go in for an IV and the tape for the IV for four hours on his arm just I mean, his arm just swelled up and was awful for a good day. But um, I should try that because I actually have like, you know, an EOS? Or what do you whatever you call those older pods? Yeah, they accidentally sent me one time I could put one on him. And then

Scott Benner 1:00:55
even just the adhesive, you pull the pot off and just like the IDs of them. Yeah, I should. I'll tell you, if you're really worried that adhesive is going to be an issue. Understanding how to get ahead of that will save you so much. I don't even have the right word. I was gonna say hassle. I was gonna say drama. It's not enough. Like if people have adhesive allergies and have to wear medical devices. It's a really serious problem. So if you can figure out a way to get ahead of it before it becomes a thing where you need to stick something to him. I think you'd save yourself a lot of headaches, you know? Yeah.

Maggie 1:01:28
Yeah, I definitely will. I'm sorry. Definitely start looking now will start looking into things and try. I'm hoping when Dexcom does all their new adhesive trials.

Scott Benner 1:01:38
They're doing it now. Yeah, yeah. So hopefully, they'll figure something out. Is it slightly? No, it is. It sucks too. Because if you have that problem, that's of course of a paramount issue. But it's not most people, like most people don't have any problems with the adhesive. And so you're Yeah, you're trying to figure it out for a small segment of the population to and hopefully that makes it easier to figure out. I don't I don't know. But and he's

Maggie 1:02:03
a like I said, he's very dramatics. I can only imagine how he's going to handle that if he gets, you know, even a red mark from it.

Scott Benner 1:02:14
I put up an episode today that obviously was like recorded, like forever ago. And I'm in there. I'm talking about I had a pain in my back for a while. And I was talking about how I was like walking around the house like I'm dying. This is it. It's over. Everyone's like, yeah, so hopefully, I don't know how that happened. But I know I was in pain at the time. It felt very important to let everybody know.

Maggie 1:02:38
Exactly. Yeah, that's exactly him.

Scott Benner 1:02:42
How old's the youngest? Do you say to?

Maggie 1:02:45
He just turned two and June?

Scott Benner 1:02:47
Will you do trial net for him?

Maggie 1:02:50
i Yeah, I think so. I know, my endo had mentioned maybe waiting a little longer to do it for him. Because if he comes back negative, then we wouldn't be able to test them again through trial net. Once they're negative once they have

Scott Benner 1:03:05
a happy with how they're funded where they can only do it one time. That actually yeah, I'm on at some point. I have to ask them to explain all that to me.

Maggie 1:03:14
Yeah, but I know there's other places that will test too, but I don't know. I I probably will even though I kind of don't want to but

Scott Benner 1:03:23
yeah, I mean, if it's gonna happen, it's gonna happen. Right. So yeah, exactly. If you know, you can do something who knows? Wow. Yeah.

Maggie 1:03:31
I'm hoping maybe they the first to have some sort of virus together. Oh, I see. And maybe those are my hopes and dreams.

Scott Benner 1:03:42
Let me explain my hopes and dreams to you. I have a dream. My children got sick at the same time. And that's why this is happening to them. Exactly. Well, I mean, at least they didn't get Rubella or whatever else your husband can get.

Maggie 1:03:56
Yeah, I know. Yeah, he gets some weird stuff.

Scott Benner 1:03:59
You were making that list earlier. And I was like her husband got diseases like that, like the hookers in like, Westerns get

Maggie 1:04:07
like, oh, yeah, we went to Mexico back in like March this year. And he got something that I mean, I have showed every one of my nurse practitioner friends and I mean, nobody can explain what some weird skin stuff came up on him. Just

Scott Benner 1:04:24
weird. So he's got maybe his skin sensitive like your son's toe?

Maggie 1:04:29
Yeah, yeah, probably. I mean, he's got a little ginger on him. So

Scott Benner 1:04:37
he has ginger.

Maggie 1:04:40
They're all sensitive skin.

Scott Benner 1:04:42
He has some ginger could easily be the title of this episode. Easily, because the rest of it, Maggie, were laughing through it. The rest of it's really sad and I don't know what else to do. Like. You've laid out a rather sad story and are you doing it I do want to ask you at the end here, like, how are you doing personally? Are you holding it together? Or is it starting to get to you?

Maggie 1:05:07
Um, I'm holding on to I think the sleepless nights here recently are tearing me down a little bit, but I'm holding it together. I was pretty much like a not really a closet alcoholic for a while, but I turned to a lot of drinking for a while. So was that I'm not doing? What's that? Oh, good.

Scott Benner 1:05:28
You're not doing?

Maggie 1:05:30
I'm not doing that. Like I was that that was my coping mechanism for a while. Oh,

Scott Benner 1:05:34
that's interesting. So I just got to be the only podcast for somebody like I was drinking to cope. And then the person goes, that's interesting. But I, I do find it interesting. Did you prior to diabetes? Did you drink the coke then?

Maggie 1:05:50
No, not I mean, I've always like, enjoyed, like, you know, having a beer or something after work or whatever. But not, I think COVID kind of started it. And then diabetes hit and that was just like, my, it's basically what would put me to sleep at night almost, or, you know, just my way of coping and try not to obsess on it and think about it all the time. Because I'm very obsessive. Like, I will think about something until I'm blue in the face. So you just be my way to relax. Really?

Scott Benner 1:06:25
You're trying to shut your brain off? Yeah, pretty much. How long? Did you do that? Before you thought I should probably stop doing this.

Maggie 1:06:33
Probably, I mean, quite a few months. Really? Honestly, I just told myself a few weeks ago, like okay, you know, got to take the drinking down a little bit.

Scott Benner 1:06:45
You got worried you got worried for yourself?

Maggie 1:06:47
Not every night, that and it's really exhausting. If you have alarms going off all night, and you had two drinks before you went to sleep, and you just want to go to sleep.

Scott Benner 1:06:57
So have you replaced that with something else to help you? Or are you just what do you know? I

Maggie 1:07:02
mean, I definitely had to take something to sleep at night, or I will like, listen, and you know, think about it all night. So you know good Benadryl usually will do the trick for me. I was

Scott Benner 1:07:13
gonna say you get up sex, but you might get another one of those hee hee babies and just have a problem again. So

Maggie 1:07:18
yeah, we're fertile.

Scott Benner 1:07:21
I mean, obviously 10 eight, two, it just sounds like you took a break in there to save some money.

Maggie 1:07:28
Yeah. Yep. Had to finish nursing school and stuff. And they're all boys.

Scott Benner 1:07:35
Yeah, that's gonna be Hello problem at some point that they're, oh my God, my mom had three boys. And even last night at her part. You know, we're together. She's 79. And I still look around. I was like, oh, like one like well measured girl in the mix would have really just helped her eyes.

Maggie 1:07:52
Yeah, absolutely. Yeah,

Scott Benner 1:07:54
you keep having babies. You're gonna keep having boys. And that's gonna be that. I know.

Maggie 1:07:59
Well, my husband wanted to go for it for a girl. And I was like, nope.

Scott Benner 1:08:03
Was that before the diabetes? Yes, yeah. That was before. Has he said that since then?

Maggie 1:08:11
Oh, no. Yeah, um, come

Scott Benner 1:08:12
to him write down. How involved is he in all this?

Maggie 1:08:16
He's there. I mean, he's working from home now after COVID and everything. So he's definitely we both, you know, we we do a lot of texting diabetes from you. And so he's pretty involved. We definitely we get a little tufts about it. Because, you know, he thinks like, he thinks that I think I'm always right, because I'm a nurse, which I don't but, or if I correct him on something, no matter what way I approach it. It's offensive, which I get it either way. So yeah, but he does he does good. I don't I don't worry. You know, he's home with them all day or anything like that?

Scott Benner 1:08:58
Well, you'll you'll adapt to all that too. I think you've just described a number of issues that most people have, you know, with trying to figure out the balance of, of who who does what, and when can you step in and say something like when you step in and say something? Are you stepping in because you think something's really going wrong? Or because it's not the way you would have done it?

Maggie 1:09:20
No, usually if I'm stepping in and saying something, I am usually saying it like well here, you know, I'll step in and say, Well, this is what I did, you know, yesterday or something and it worked. I don't know if you know, you want to try it or you know, so it, it just depends on the day and how I approach it. Honestly.

Scott Benner 1:09:46
Are you taking responsibility for your tone?

Maggie 1:09:49
I, I don't know if it's my town, or I mean, he'll admit to you too. He's moody like a woman so it could be on what type of mood he's in when I bring it up. or if you know, or how frustrated or tired we are dealing with diabetes when we bring things up. So it goes both ways

Scott Benner 1:10:09
to meet more people from Arizona. I like the way you talk. Thank you. I very much enjoy just now when you call your husband moody, like a woman for some reason, like, that's not a statement people are generally willing to make in 2021. So

Maggie 1:10:24
Oh, he'll admit it, too. He knows. So.

Scott Benner 1:10:27
Yeah, well, listen, he's, everyone's stressed out like, right. It's a ton of stress, obviously. I just wonder, I just wondered if you were saying like, sometimes I come at him in a way that I understand his response.

Maggie 1:10:40
Yeah, I will. Yeah, probably, sometimes. But sometimes I feel like I'm coming in a very neutral like, hey, no, I was just bringing it up. Because I didn't understand either, or I just learned this today or something. Yeah. Yeah,

Scott Benner 1:10:54
he won't be a person for like, 12 more years. So you're fine. You're gonna have to ride that out. It takes me Yeah, it's there's a very I don't know, like, I don't know, his background. And I'm sure everybody's not like this. But it's not hard to feel attacked. You know, for some people. Yeah. And then you get your you get defensive. And you're like, Well, what's wrong? I'm doing a good job. Like, why? You know, and then it before you know it, you're not talking about the thing you're talking about anymore? So absolutely, yeah. Let's, uh, it's messy being alive. So. Really? Yeah. When you were 18. And you were like, oh, it's gonna be great. I'll meet a boy and probably get a car or something. And maybe I'll get a job or whatever. And, yeah, you're never like, you know, what will happen is one day I'll say something in a tone and my husband will get defensive about it because of the way he grew up. And this is all going to be very upsetting because one of our children have diabetes. Yeah, it wasn't exactly it wasn't the picture you're painting in your head.

Maggie 1:11:50
100%

Scott Benner 1:11:52
Guess what? I think we're all in the same boat. So at least we're together. Right isn't really that helpful for being a little more tolerable? Well, I really appreciate you coming on and doing this. I want to make sure that we talked about everything that you wanted to die leave anything out, or

Maggie 1:12:10
Yeah, no. Oh, I was gonna ask you do any do since you are asking a lot of people about things that their children had or whatever do a lot of do you find a lot of kids with? Like get type one or have type one have that Moleskine? contagious and which ones that the little the like viral skin infection?

Scott Benner 1:12:35
I haven't heard that one yet. I hear hand Foot Mouth. Yeah, a lot. Which one did you just say?

Maggie 1:12:42
That's called molluscum can pay geo some googling it

Scott Benner 1:12:50
I think you're confusing. Harry Potter speller. Oh, wait, I got it here. Do some viral skin infection that results in round firm, painless bombs that condition spreads through our contact spreads through contact with an infected person or contaminated object. Though painless, the small bumps might itch, scratches, scratch bumps can spread infecting surrounding skin. The bumps usually disappear on their own in rare cases, the bumps can be removed using medications 200,000 a year, usually self treatable.

Maggie 1:13:25
Hey, well, the fact that you haven't heard of it makes me happy. So that's

Scott Benner 1:13:28
good. Okay, by having unprotected vaginal, anal or oral sex by skin to skin contact handshakes or hugs. Well, there's a wide chasm there. Hmm.

Maggie 1:13:37
I was gonna say that's not happening with my children.

Scott Benner 1:13:41
I was like, I just I'm just reading how it spreads here. And it just struck me I was like, wow, from hugs to.

Maggie 1:13:48
I know. And then when you feel if you type in like toddlers or children, it's, you know, yeah. Basically, any kind of touching.

Scott Benner 1:13:56
pox virus. Oh molluscum contagiosum virus is a DNA pox virus that causes Hold on. That causes the human skin infection. Alaska can teach you some facts about well pox virus. is I think hand Foot and Mouth is a pox virus as well.

Maggie 1:14:18
Is it? I'm looking I was there I have to look that up. Because what's the other one besides the hand Foot Mouth? I remember you had the doctor on normally presents with like it Coxsackie Oh,

Scott Benner 1:14:30
yeah, well, yeah, yeah. Coxsackie is hand Foot Mouth Disease mouth. It is that viral infection common in young children, sores in the mouth and rash and has a feet commonly called a pox virus. Oh commonly caused by Coxsackie virus. There's no specific treatment for hand foot mouth and I'm looking home Cox virus pox virus. BC Z causes chickenpox while the Coxsackie virus tip Causes H F. MD symptoms and signs of chickenpox in hand Foot Mouth Disease that are similar include rashes that often formed blisters feeling unwell malaise and fever? I don't know. If I'm going off something just anecdotal like where? Yeah, when Arden had Coxsackie Adam told her her pediatrician told her told us like it's like the chickenpox you get it once and then never comes back again. Except her sort of never went away. I don't know. I think we're beyond my.

Maggie 1:15:31
Yeah, my I have to look into that. Yeah.

Scott Benner 1:15:35
I'm not a you're out of my depth.

Maggie 1:15:39
Well, I was just curious if you had heard any of your, you know, listeners ask about it. But the fact you haven't heard of it,

Scott Benner 1:15:47
although maybe I just haven't heard of it, because people can't pronounce.

Maggie 1:15:51
I know. I it's very hard. Yeah. I usually have to Google it. And I forget about what it's called. I'm like, wait, what's it called again?

Scott Benner 1:15:58
Hmm. No, I have to find out. Then you if you let if you find out, let me know. Please. And I'll add it to the end of the episode. Yeah, cool. Yep. All right. Well, thank you very much for coming on and doing this with me. Um, I hope the rest of your day is better than the hour you spent lock that little room so you

Maggie 1:16:16
know, thank you so much. I was super excited to come on.

Scott Benner 1:16:18
Thank you did a great job.

Hey, huge thanks to Maggie for coming on the show and chatting with me. And thank you goes out as well to Dexcom and on the pod. Don't forget about that. Dexcom g six@dexcom.com. Forward slash juice box. And go find out if you're eligible for the 3030 almost, I can't even say I'll try again. Go. Whoo. Here we go. And go find out if you're eligible for that free 30 day trial the Omni pod dash at Omni pod.com forward slash juicebox. Remember the Omni pod promise, you don't have to wait for Omni pod five. Get yourself a dash today. And as soon as Omni pod five is available and covered by your insurance, you can switch they promise. Thank you so much for listening today. Please remember to go to T one D exchange forward slash juice box and fill out the survey. It will take you fewer than 10 minutes it will help people with type one diabetes and it supports the podcast. It must or I wouldn't say it this much. Is it I'm saying like if you appreciate the podcast, go fill out the survey, please. All you have to be is a US resident who has type one or a US resident who cares for someone with type one. I'd also like to remind you that we have a Facebook group and it's pretty gosh darn terrific. Juicebox Podcast type one diabetes on Facebook. It's a private group. It has over 20,000 members. And the only thing it's missing is you. That was hokey. Hmm. And the only thing that's missing is you head over today. Honestly, it's a great Facebook group. I think you'll get a lot out of it. You should give it a look. Juicebox Podcast type one diabetes. If you promise to go check it out. I promise to stop saying hokey things I heard on commercials in the 70s.

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#625 Divorce and Disagreement

Candice is a divorced mother with two children. Her youngest has type 1 diabetes.

You can always listen to the Juicebox Podcast here but the cool kids use: Apple Podcasts/iOS - Spotify - Amazon Music - Google Play/Android - iHeart Radio -  Radio Public, Amazon Alexa or wherever they get audio.

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DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.

Scott Benner 0:00
Hello friends, and welcome to episode 625 of the Juicebox Podcast.

On today's podcast I'll be speaking with Candace. She's the mother of an 11 year old child with type one diabetes, and she is divorced from her children's father. Today we're going to talk about what that's like when you and your ex don't agree about type one diabetes. Today while you're listening, please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan. We're becoming bold with insulin. If you're a US resident who has type one diabetes, or is the caregiver of someone with type one, and you'd like to support type one diabetes research from the comfort of your home, you can do that by taking a survey in less than 10 minutes. I think I should have said in fewer than 10 minutes in fewer than 10 minutes at T one D exchange.org. Forward slash juicebox. There's links in the show notes and links at Juicebox Podcast comm it really only takes a few minutes

this show is sponsored today by the glucagon that my daughter carries. G voc hypo Penn Find out more at G voc glucagon.com. Forward slash juicebox. today's podcast is also sponsored by touched by type one please check them out on Facebook, Instagram, and it touched by type one.org.

Candace 1:55
My name is Candace and I have two sons and a 15 year old and I have 11 year old type one diabetic cannabis here

Scott Benner 2:03
we are together. I feel like you and I have spent some time online talking recently.

Candace 2:09
We have I like to pop up in one year lives and like you would just be and I was like super excited and squealed like a little fangirl like Scott's talking to me.

Scott Benner 2:19
It's very, very strange. And you should not admit to that out loud.

Candace 2:23
I'll own it out.

Scott Benner 2:25
I appreciate that. I know my wife popped into that live for a couple of months my daughter did through my wife and wow. So she sent me a message at like my wife, like through Kelly's account. And she I could tell she was teasing me when it went by. And as soon as I saw the words I thought Arden wrote that I think

Candace 2:44
are really saying that you're like there's no white way Kelly said that has to be my daughter.

Scott Benner 2:49
It was way too sweet. And like and so I was like this is not Kelly.

Candace 2:55
I love that you know that about?

Scott Benner 2:56
So and so she's messing with me. And I'm like, alright, but yeah, I thought that was great. I just, I came upstairs to edit the show one evening, and I just didn't have it in me to do it. And I was like, I'll just jump online and say hi to people instead. And then it turned into like a whole thing. A couple 100 people in there for a while. So

Candace 3:14
yeah, and it was late for you. Because here in California, it was probably like 830 or something or eight o'clock. So it's been late for you.

Scott Benner 3:21
I was just bored. And I didn't want to go to sleep. And I didn't I didn't. I just didn't want to edit a show. So yeah,

Candace 3:28
well, you had a couple 100 People who are all pretty excited and excited and fanboying and fangirling out to talk to you too. So

Scott Benner 3:34
very strange. How old was your 11 year old when he was diagnosed?

Candace 3:37
He was 11 he was diagnosed in November of last year?

Scott Benner 3:41
Oh, nine months ago? Yes.

Candace 3:45
So we're kind of still on the newbies of all this stuff.

Scott Benner 3:48
Okay. 11 years old. I'm making notes for myself. Also, people should know that I looked up saw that it was August. I immediately knew that August was the eighth month of the year and added one month.

Candace 3:59
Oh, you're so good at your stop math. Right, right.

Scott Benner 4:03
Because November, in November, there's one month left. And so maybe it's closer to 10 months, but I thought you would agreed at nine. So I said Yeah, absolutely. Let's talk for a minute about what that was like. So how did you figure out that something was up?

Candace 4:19
Kind of the standard. You know, my kiddos hadn't they had this kind of crappy health insurance through my ex for a year and they hadn't been seen. And it's like the pandemic and they were both were really healthy nothing coming up and I was just had recently had switched in my job to getting them on my health insurance and I immediately had scheduled a well check visit for both of them. And my 11 year old I'll just call him little dude. The little dude has always had a big temper but had recently and it had been COVID So it was kind of hard to know with throwing just massive tantrums every day, just flipping out over zoom Man sobbing and crying. And it was like not completely out of character, but the intensity and the frequency was up. And really the only other things where his skin got really dry and I was like lotioning this kid up every day, and he was drinking a lot of water. So we took him into the doctor's, both boys the same time doctors checking them out. He noticed with the 11 year old, he said, you know, my ex is a tall guy, he's six, four, and I'm five, five, and he and my other my older son is big. He's like six feet tall. And he's like, you know, a little dude is a little bit on the smaller side, I want to check his growth hormone or some hormone and so we're going to do a blood draw. Instead, okay? Bill, the 11 year old, he flipped out, he's never had a blood draw, I had to hold him down. We almost left that day without doing it. Because he was so scared. And they did the blood draw, and we went home. And I guess I found out later somebody had checked glucose, just kind of as a afterthought. It wasn't the doctor even who did it. And the next morning, we went, we left the hospital to after the blood draw, we went and got giant ice cream cones and sprinkles on top, actually have a picture of him eating an ice cream cone. It's like the last day that I knew everything was okay. And that at 730 in the morning, I started getting calls from the doctor saying you need to go to the hospital, your son has type one diabetes, and it was just like the day before Thanksgiving, and just like oh, crap. Okay. So we drove to the hospital. My ex husband was visiting his girlfriend's family, and they were in San Diego, and we're up near San Francisco. So that was pretty far I called him and he was kind of unsure, like, do I come back? Do I not I was like, I'm not gonna tell you what to do. So he ended up driving back, but we checked into the hospital. Kind of, you know, it was a whirlwind. It was really tough. My guy was a hysterical, you know, like, they came in to do the first insulin shot. And he we had to hold them down. I mean, he was just sobbing. It's too much. It's too much. I can't handle this. And I'm just like, holy crap. I feel like I went into like, hyperfocused mom mode, you know, with, like, we got this, we're gonna do this. And so yeah, we spent the next few days in the hospital, but it was also kind of the beginning of dealing with my ex. And, you know, my ex wife loves the boys. We've been divorced since little guy was 10 months old. And we've had a decent co parenting relationship. You know, in the beginning of our divorce, we did the whole, like nesting thing where like, the kids didn't move back and forth, like we did, you know, where he would come to the house, and I would leave kind of thing, okay. So we were able to do that for a number of years. Because, you know, the baby, he was so little the time it was like, I don't want him moving around. And my other kid was, you know, three and a half, four. And so we were able to co parent enough. But I've been sort of the primary caregiver, like, I'm the one who's been, you know, doing the appointments and camp and IEPs and doctors and kind of advocating for things and you know, they go to his house every other weekend. And it's kind of like, that's their thing. And they zone out and play video games. And I'm the one who's like, you know, camp in soccer, and, you know, parkour gymnastics and all that kind of stuff around he shows up for

Scott Benner 8:20
what everything else.

Candace 8:23
Yeah, everything else. Exactly. And I guess I just, I just kind of was okay with that dynamic, but within the diabetes, like, it became not okay. And it became very apparent even at the hospital. You know, he drove back from San Diego. And so he showed up at the hospital on Thursday, we had checked it on Wednesday, the 25th. And he, you know, he hung out for a couple hours and left, the all the doctors were like, Wait, where did he go? And I'm like, you left? And they're like, No, we got to teach you all. So my boyfriend's. And I've been together for 10 years. So he's known little guy since he's been, you know, 18 months old. You know, and we're camped out there. And they've got, you know, the dieticians and the Enzo and, you know, the nurse practitioner and all the people coming and doing the teaching, and everyone's like, Where's, where's the dad? And I'm like, he went, how, you know, I've called him, you know, whatever. It's like, you need to get him back. You need to get him back here. And I'm like, I have, he's like, I'll call back and put me on video. And I'm like, they're saying, You need to be here. They they need to show us stuff and like, oh, you know, I got this. I couldn't get him back. And then the hospital starts telling me well, we can't release your kid until all the adults now and I was like, well, then somebody from this hospital needs to call him because he's not going to listen to me. So we got together with them endo and the charge nurse and they call and I had their little meeting and then I guess somebody called him and so he showed up on Friday morning. And the boyfriend and I like took off because we realized like if we were in the room, we had so many questions were like, you know, neurotic Jews. So we had like, the lists of the what ifs. And what do we do when and we were sort of taking up all the space. And I was like, We need to get out of the room so my ex can just listen, and they can talk to him. So he stayed. Actually, he came in on Saturday, so he wouldn't come in on Friday. And that was the point we're kind of people were panicking, and like, how do we get them in here? So he came in on Saturday. Kind of got the teaching for that day, and they sent us home. And yeah, so

Scott Benner 10:28
I have questions. Sure. Okay. So he left and said, I got this, was there any reason to believe that he understood diabetes?

Candace 10:38
No, okay. He's, he's a he's a guy, you know, that has a lot of swagger. And like, he's kind of arrogant. And he believes he like knows stuff, even when he doesn't. And it's like, sometimes to a fault. You know, it's great to have confidence. But he didn't, you know, I think he was tired. He had just driven like, 10 hours, and he was wanted to go home and sleep. And I don't think he understood what this was. I think he thought, oh, you know, I gave a couple shots or something.

Scott Benner 11:07
Yeah. Here's the next question. So he's at the hospital prior to leaving. You're there. Your boyfriend's there as well, I imagine. Yeah. Is that just an uncomfortable situation for your ex?

Candace 11:18
No, you know, we've been since we've been together, we've been together 10 years, like we do Halloween together, we do birthdays together, like actually, my ex and my boyfriend get along better than my ex and I do. So I use my boyfriend a lot of the time to communicate with my axe, so they're good. They're totally fine. I have a picture actually, both of them sitting next to each other, like shooting on oranges.

Scott Benner 11:39
So okay, so alright, I'm just trying to figure out like that. So I'm gonna, you know, you're describing a person who is maybe has some false bravado about things. Maybe this was one of those situations where he thought, Oh, the BS way I usually get through stuff isn't going to work here. And then he just maybe panicked and laughed. Yeah, you know, and thought you guys are a family. You'll handle it. And then yes, yeah. Then Then I'll only be there on the weekends anyway, for video games. He didn't know exactly. Exactly. Video games were a variable for blood sugar.

Candace 12:13
Exactly, exactly. It doesn't know about the whole gentleman.

Scott Benner 12:16
But okay, so you see, you work all that out. I assume he got his instruction, and you got yours. And now you had home. I know. This is kind of off topic. Tiny bit. But did you try to have Thanksgiving when you got home? Or do you just skip it?

Candace 12:33
No, we just skipped it. It skipped it. It was at that point. It was Sunday, you know, so yeah, it was kind of done.

Scott Benner 12:42
I'm not making a turkey. No, no, although they're really cheap. Four days after Thanksgiving.

Candace 12:47
They must they must be I'm a terrible cook. So I wouldn't have cooked Thanksgiving anyway, we would have probably went to a restaurant.

Scott Benner 12:54
That wasn't a big deal. You know, I've never done that. That's interesting. Really. I grew up watching my grandmother prepare like a big meal and I almost robotically prepare the meal that she used to prepare ahead. It's amazing. While my family sleeps, I just get up. Lucky them. Nobody. Nobody helps me. It's okay. Because later when I do the dishes, and they don't help me,

Candace 13:16
you got to do the dishes after cooking. That's not fair.

Scott Benner 13:19
They're terrible. People really? I mean, I don't get that podcast. Deserve Yeah, too. Bad group. So alright, so your home now? You come home with needles and a meter. Yeah. And a kid who, three days earlier was punching nurses almost because you were. So how did that all work out?

Candace 13:39
He was unbelievably amazing. Within a few hours, this kid turned around, I would have never guessed it. This is a total wimp, like in life like I've always he's feisty and he's fiery. Any sensitive and I did not think this was gonna go out. But like he turned it around. Like, he just, I mean, kids are resilient. And he just was like, Oh, I get to eat as many cheese sticks as I want. I'm like, yep. Okay. And like he just kind of embraced it. He's like, I've got it. He's like, I have got a I don't forget and like a condition and it's incurable. Yes, you do. And we just yeah, he kind of was not cool with that I got him a lovey when we were there at the hospital I think in like in the you know, gift shop and like he named it Barrett. I'm a therapist and be like, you know, psychological about it. I was like, interesting. You name the kid, the stuffy beret. And he held on to that stuffy but he came home and he was just brave and he took his shots and, you know, we had him test all of our blood sugars. And we really just, we were like, We're gonna make this like as Chill as possible and as disruptive as possible. And he really went with it. And in sort of ways, we were lucky that it was a pandemic. He was doing school from home. And so I was working from home. So it made sort of dosing, lunch and all those things so much easier. And so it was kind of an easier way to start this.

Scott Benner 15:18
Yeah, a lot of consistency. Yeah. Okay. Is any of the Do you think maybe he calmed down when his blood sugar came down? How high was his blood sugar when he went in?

Candace 15:29
It was 580. Um, yeah, I think he's already kind of a moody feisty kid. But it changed. Like once he got home was on insulin, like the tantrums stopped the screaming, throwing stuff, like tantrums that he was having over school definitely stopped his mood was definitely different.

Scott Benner 15:50
What about the I can do this is that I, maybe I'm looking too far into this. Is that from the dad does he do the kids now that like? My understanding was,

Candace 16:04
he was very, like, I can do this in the sense of I don't want anything to do with it. You guys do it all. Like, don't ask me like, you know, the beginning of like, how many you know, chicken nuggets? Do you think you're gonna eat how much this and it became like, don't ask me just figure it out. And so we gave him shots. We did it all to him. And all he had to do was like sit there with him. That was

Scott Benner 16:24
really good. Okay, with this, the taking the injections, checking his blood sugar, that kind of stuff. Yeah, yeah. How long? Did you do it that way? I mean, are you still doing it that way? It's only been

Candace 16:34
Yeah, we switched to a pump in the beginning of June. So really recently, we got the tandem, we got the Dexcom pretty early on, we got that in about like January, maybe a month or two in. And that was great. It was pretty scary, though. He was scared. We went to the doctor's was one of the few times you know, we went in person because everything's like video calls. And the boyfriend had them put put it on him first. And then we put it on little dude. And he was really scared and like, I don't want to wear this thing. And I don't like it. And that hurts. And we were like, just how about you wear it for one day? You know, and he worked for the one day and he was like, Okay, no more fingerprints. Yeah, I like this. And I was like, fantastic. And then we really did want the pump. And we were pushing for that. And like, you know, they, they were kind of I don't know, if they're reluctant. They're kind of the old school stuff, too. We want you to know how to do this all old school way of blah, blah, blah. And I was like, I get this and I think that the nurse at some point, you know, that we talked to all the time got that when I started adjusting, you know, Lantis and carb ratios on my own to you know, figure out blood sugar. She was like, okay, we can move to a pump. And, you know, at that point, you know, we've been doing it for for a while. And so they were okay, you know, we'll move you to the pump. I like

Scott Benner 17:51
how your son sort of a cheap date like he music was overtaken easily by if I just get eat a bunch of cheese sticks. This is better. And it took it took one day of not getting his fingers like stuck in he's like, alright, I'll do this this thing. Yeah, that just before he's like vehement. I think there's a good lesson in that for people actually. Because you do see sometimes like people talk about, like, my kid put up such a fight. They, you know, they made these declarative statements about, you know, I'd sooner died and do this thing. And

Candace 18:21
they get in the hospital, he had said, I want to die. You know, and then within six hours, he's walking around his like, get a beautiful room like in this, you know, Oakland, downtown Oakland, top of the top floor of the hospital there. He's like, I got this TV with my name on it. And it's got

Scott Benner 18:43
in between his fingers.

Candace 18:45
Yeah. Yeah, he was he was he was like, I've got it going on. So yeah, for sure.

Scott Benner 18:50
I just think that's important to realize that I mean, those are fairly common reactions to things like that. And I think that you know, oftentimes and understandably This is the first medical situation people have ever been in so they they take the kids super literally the word and yeah, very seriously like you know, he he she said, This is how they feel and so this is it now and I'm always like, I don't know like yeah, what was the position you let him make you know, I mean, yeah,

Candace 19:21
exactly like this. This is health and we've been very pro like it's his body and like, you get to choose where stuff goes on you or how we do it and we're very slow like, shots. It was always like, Okay, you show me where are you ready? We'd always counted down but it wasn't an option. And so the same thing with you know, we kind of step by step was just like no, this is what's happening. I get it. I hear your protest, but we're gonna try it and then if you don't like it, alright, we'll talk about it.

Scott Benner 19:47
Yeah, baby. You have to give it a shot. I mean, honestly, I I refinance, financed our mortgage. A year ago during the guy never asked the kids what they thought about it once. I didn't say do you guys think about this refi I'm thinking of taking some years off but leaving the payment the same.

Candace 20:04
Right? I don't like Kelly had something to say about I don't

Scott Benner 20:06
know, even she just she's like, what's gonna happen? I told her she's like, okay. But no, I mean, money. I just think like, I'll tell you what cutting years off your mortgage saves you a ton of money. That's what's really great. But But my point is that, I mean, it's a health concern. And yeah, and I get that they're scared and that you don't want to, you don't want to force them into something, you don't want to make them do something that they don't want to do, because that has its own set of pitfalls, you but you have to try it because they can't imagine the other side of this like you can. And so you have to show it to them is all

Candace 20:44
No, and they're scared. You know, when they're scared, like, and he's a very avoidant kid. If he's scared, he's like, I'm not doing that. Scary. That sounds scary. Hell, no. Oh, thank you, yeah, horse want to sign me up to attach something to my body know that I know already. The fingerprints that's tolerable, and then you get the Dexcom on, you're like, Oh, this is way better.

Scott Benner 21:05
And then all of a sudden, you understand you're in a different and new situation. And they're different implications down and yeah, to make you have to make decisions based on those. So. Okay, so I'm assuming for a large part of this conversation, we're really going to be talking about the difficulties you were having. With their dad. Right. Like,

Candace 21:26
yeah, I mean, it's, it's been a struggle. And, you know, I joined like, a bunch of Facebook groups, I think, just, you know, Facebook groups in the hospital, you know, like, and I think I found the podcast, like, like, a weekend, you know, it's just, I think my way of dealing with anxiety is, I'm going to learn everything, you know, and I'm going to read everything, and I'm going to find out as much as I can. And, you know, the more that I was learning, I was like, oh, like, this is really complicated, you know, they sent us home with, like you said, like, some needles and instructions, or ratio, you know, and the ex got that, you know, and every other weekend, they go to his house, and I'd send them and we had, like, you know, the log book where you wrote down everything he ate, and how much insulin you gave, and, you know, the instructions, and I would send all of that with them. And like, we get the book back, and like, the numbers were wrong, like the amount of insulin he was giving was wrong, you know, the food, I could see what he was eating, and it was like waffles with chocolate syrup for breakfast. And I'm just like, you know, and, and those are the things that I like, Oh, I'm like, I can't dictate what he's gonna eat at that house. I can't dictate, you know, moving his body, but the numbers are wrong, the amount of insulin he's getting is wrong. And so we have tried both the boyfriend and I and every which way to be like, hey, you know, this is hard, you know, you know, we have each other to talk to and bounce ideas off. And it's just you. I mean, he lives with a girlfriend, but his girlfriend is like, very hands off about the kids like, those are his kids there. She's not involved really with them. And so I get, it's just him and I have compassion for him. It's a lot. But I was like, call me call the boyfriend call. In the middle of the night. You can call before every meal. Like I'm terrible at math. I thought immediately when this went down in the hospital, like, I'm going to kill my kid, I am the worst at math ever. Like, I have never passed a math class I got through graduate school without ever passing algebra, like, it is insane. And I'm just thinking, I'm going to kill my kid with this insulin thing, and ratios and carbs and you know, insulin sensitivity factors. So I understood I was so compassionate for him about how hard this was, but I was like, call him call us we, you know, we'll work it through because I could always bounce everything off my boyfriend, like, Are my numbers, right? Did I do this? Right? Yeah. Can you check the you know, the syringe and he didn't. And, you know, he would, oh, I got this. I'm fine. I don't know. You know, and then we get the book back. And we're like, dude, the numbers are off. Like you gave way too much insulin, or I don't these numbers don't make sense. And we've walked it through with Oh, yeah, yeah, well, no, I just, you know, I was just tired. All right, this, this or that, you know, and then he might call for a meal or two and say, okay, he's getting, you know, 45 carbs. What do I do? And what's his blood sugar now, okay. And we give it to him. And that's it. And then he would be like, I'm good. And then, you know, it started happening with especially with the Dexcom. I would see little guys numbers, like just up rising, you know, and he's like, sitting around, you know, 300 or whatever. And I call my accent, like, you got to test for ketones. And he's like, yeah, oh, I can't find the bottle. And I'm like, Okay, well, go to CVS. Like, you got to test him for ketones. He's over 300 He's been there for a while, right? Oh, yeah. Well, no, it's a prescription. Right? No, it's not a prescription. You can get it on Amazon. You can go to CVS you can go to like, you know, the damn any pharmacy, and he just, he didn't do it. He just wouldn't do it. And I like I don't understand Like, I know you love this kid, and I just don't think he understood how dangerous it was. So and

Scott Benner 25:07
so what do you have to try to make him understand the gravity of it? Like, what's the I mean, the steps obviously didn't work. I mean, yeah. Let me jump ahead for a second ask a question. So jump right back. Does he get it now? I don't know. Okay. All right. So then what have you tried so far to explain the gravity of it.

Candace 25:29
I have called every single member of our endo team and begged them to call. I have talked to an endocrinologist. I've talked to our you know, nurse practitioner, I've talked to the dietician. I've talked to our social worker, because we have like the whole team. And I've explained this because, you know, this is I'm struggling here. And finally, when we got to the pump, and it was the first week on the pump, and little dude went to his house. He came back, he went to camp, I had texted the ex over the weekend, I said, how did that change? Go? Because I knew this would be the first time he was doing it. And he didn't respond to me. And that's also a lot of issues. I will text him and he just doesn't respond. Um, and so I texted him on Sunday when it was supposed to go down. How did it go? No response on Monday. I could see little dude was at camp and he was really high. And I was like, hey, like, how did this that change? Go? I can see that. He's high at camp. And he's like, is that the cartridge thingy? And I'm like, Yes, it's the whole thing. The thing that's attached to his body because we have a to slim and the cartridge thing. Like, if that doesn't have insulin in it, he has no insulin, his body. He's like, you know, oh, yeah, I was gonna do that this afternoon. And I'm just like,

Scott Benner 26:43
Alright, I have questions. Here we go. Though some of them will see him in delicate. I know, You've been apart for 10 years. But how old are you right now? I am 45 How old is he?

Candace 26:56
He's 46.

Scott Benner 26:58
Okay. 10 years ago. How long were you married for when you when you got divorced?

Candace 27:04
We have been married for about four and a half years.

Scott Benner 27:08
So you guys got married? Like, right in your early? 30s? Yeah, like

Candace 27:12
I was. Just to turn 30

Scott Benner 27:14
Was that your first marriage? Yeah. How about him? Yes. Alright, so now the questions are gonna become more pointed out sorry, was the Nick then.

Candace 27:25
Cool. Um, he was checked out then. And he was always off in his own world. He's like a computer guy. He is or at least thinks he is brilliant and always on the edge of either disaster or brilliance. And he's like about to you know, have a major breakthrough and whatever it is, he does computer wise. I don't understand any of it. Or he's about on like, the verge of despair. So he's very involved in his career, and I was always kind of the one doing the kid thing.

Scott Benner 27:55
Mm hmm. I heard you say really? You made a reference to being like super focused or or asking a lot of questions. You said Jewish like, yeah. Did you did you marry a girl? Is that what you did? I said my parents not tell you that. Yeah, I'm not Jewish and I know that you did that wrong. Like what is Ray? All right here like

Candace 28:21
an honorary Jew though. I mean, you seem like you could totally be

Scott Benner 28:25
easily totally cut. That's not the point.

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Okay so that the entire time you're talking I'm like, what did she do she she found a Gentile I got married and that's the whole thing up like I can tell immediately that The point

Candace 30:01
No, I made some bad choices. I was living in Boston and I was in grad school and I met him and I'm you know, I'm from California, and I'm like, oh, big handsome guy. I am 29 Hold on, let's get married.

Scott Benner 30:14
I know more about you than you think. So. I want to say two things here. First of all, you're cool. If you're not Jewish, just I'm telling you Jewish girls sometimes have expectations that go and boys don't know how to like, like meet and that that's not for nothing. But I thought you met a big tall handsome boy, didn't you?

Candace 30:32
I did.

Scott Benner 30:34
You all that you want to tell the girls now the young ones. Married Jewish boy. Or the nice. Nice guy. Nice guy. He's, I guarantee you right now, if I was that tall, and handsome, I would put almost no effort into anything. You don't have to. I would just walk around like be like, Hey, do you see how God damn handsome? I am. Come over here and do stuff for me. Like make me food or clean the thing or I don't know. I would be 1951 in my head. If I was

Candace 31:08
that guy. What happens like after you're like, you know, once you hit past 6162 You just don't have to try.

Scott Benner 31:13
I don't even know. I I'm so jealous. A tall man. I couldn't even begin to tell you. I have to. I'm like a child. I look up at them. And they look down at me. And I know they they absolutely think I'm a woman. Like I'm not even kidding. Like, I know. They look down. They're like, Oh, everyone's shorter than me. It's just not a man like I am. I know that is in the back of their head somewhere. Not everybody know. Decent people. But that's not likely.

Candace 31:39
My boyfriend's gonna kill him. But he's pretty sure like, like ways. Oh, no.

Scott Benner 31:43
You figured out that the boyfriends Jewish? Yeah. Oh, yeah. Yeah. Oh, please, him. You won't marry this guy. This guy stuck with you for 10 years. You're not gonna marry him? Because the last guy didn't work out.

Candace 31:56
Yeah, no way. Never get married. Not happy way to go Kansas. I learned my lesson on that.

Scott Benner 32:02
figured everything out backwards. But that's okay. Yeah. All right. So we can't

Candace 32:06
I wish I could go back to my 29 year old self. So you don't need to get married, like I didn't even really want to is more of a like, I felt like oh, this is the thing I'm supposed to be doing. You know,

Scott Benner 32:14
I'm older. Yeah, in this case, so pretty.

Candace 32:18
He's so cute. I want to have babies and like, this is kind of what we're supposed to be doing. I'm 29 You know, like, and then like,

Scott Benner 32:26
I think you're supposed to wait till after you're bored about the sex before you make decisions like that. Next time, I would well, next time. Why next time you got a guy now he's gonna stay with you till the end of time. Yeah, no, we're not getting married. It's never gonna happen. This new guy would he'd stay three days after you kicked them out with me?

Candace 32:43
Yes, yes.

Scott Benner 32:46
Yeah, yeah. Yeah. Okay. I hope all you girls hear what's happening here. Let me take a drink. I grew up my entire life with women around me telling me you're such a nice person. You're such a good person. Girls are gonna love that. Blah, blah, blah. Let me tell you something. Not one girl appreciated that.

Candace 33:06
Yeah, no, I went for the guy that, you know, he ignored me. I was I got to Boston. I was dating two guys. When I first got there. I was like, Yeah, I'm on my own. I'm in grad school. And I was dating this doctor. And then the this guy and I call him the computer guy. And the doctor liked me. And he wanted to he wasn't Jewish, but he wanted he was all over it wanted to date and computer guy. My ex was ignoring me. Of course, I wanted to be with the guy who ignored me.

Scott Benner 33:31
For non Jews out there. The doctor part makes him acceptable. Even though it wasn't Yeah, your mom would have been like, that's fine. Oh, yeah. We'll convert him later. Don't worry about that, Doctor. Don't you worry, sweetie. Exactly. Right. Listen. So okay, now we're past the sins of the flesh. Let's just saying. But we're still left with a guy who loves your boys, but is mainly good for video games and ignoring things and not texting you back. Yes. And so then I have to ask. If he texted you would you text him back? Even if it wasn't about the kids? Yeah, you would. Okay, so middle middle the day, hey, blah, blah, blah. I have a question. I don't understand how the the garbage disposal works. I'm assuming he doesn't understand that. And so and you, you would say, oh, it's the button next to the thing you wouldn't want

Candace 34:25
because it would be so out of character for him to text me randomly. I would be like this must be important.

Scott Benner 34:30
Okay. But if you sent him a similar text, you're not going to get any response whatsoever. Is there a chance that this is because his girlfriend doesn't want to see him texting with you and your boyfriend doesn't mind if he texts you?

Candace 34:44
That is a possibility. His girlfriend's been around for about six or seven years. I always invite her to the birthday parties and stuff and she has shown up a few times but I don't even know this woman's last name.

Scott Benner 34:56
Is she blonde?

Candace 34:58
Ah, she's kind of like lightish brown hair maybe blonde? I don't know. I haven't seen her in years. Like, I couldn't even probably pick her out of a lineup anymore. Like I haven't seen her. It's been years since I've seen her. So I think she's very, very threatened by me.

Scott Benner 35:11
I have no judgments about blondes, but if you get Arden back on here ever, I will ask her opinions. If you have a certain angular jaw and a lightness of your hair art and says she doesn't trust you.

Candace 35:23
I think ours is a smart girl. I

Scott Benner 35:24
don't even know what that means. Like, but she'll be like, not sure about background like how do you what are you basing this on? She just use the jawline. Like, what? What do you take from that? Exactly? She's like, I don't know. I just I can tell. I'm like, Okay, I think she's kidding. Anyway, I just wanted to work in one of Arden's jokes so that 10 years from now, she hears that she'll be like, Oh my god, I used to say, Thanks, Dad. Yeah.

Candace 35:48
Okay, so painting with broad strokes here.

Scott Benner 35:50
Yeah, right. That's a good point to say once in a while. I don't assume if people listen, they understand. Like, like you listen, you understand like that. I'm kidding about that. I think.

Candace 36:03
I think so. I think most people who listen one have to get your sense of humor, or they wouldn't keep listening.

Scott Benner 36:09
You would think and and unless this is your first episode, and you're very blonde and have an angular jaw. And then right now I've may have, I might have just gotten myself out of a subscription or lesson, but that's okay.

Candace 36:20
Are you freaked out? All the Jewish all the short Jewish guys out

Scott Benner 36:23
there? Just a blonde girls, hang on? You're gonna love us? Just stick with me? Okay. You have no idea how many people are just like Jewish? What's that? People in the middle of the country right now? Like, I don't know what you're talking about.

Candace 36:38
We're the ones running the world. Right?

Scott Benner 36:41
That's what I heard. Lasers. Yeah. Deshaun. Jackson told me last year anyway, so not getting them? How crazy some people are. Okay, so you're in a weird situation, quite obviously. And yeah, you're not getting out of it. It's been a number of months now. It's not getting any better. So you don't think that it's that he doesn't care? But no, you don't have enough access to him to figure it out. And you're trying now to get other people to intercede doctors or anybody to step in and say hey, here are the things you need to understand. But it's not happening. So my last question about him. And then I'm going to move on to ideas about how to work this out. Yeah. Is he a little open today? Or no?

Candace 37:26
No, I think he's actually a really bright guy, which is even more frustrating. I think that he's just so focused on his work and his own life that this it's just not, I don't know, if he doesn't get the urgency to it. You know, like, we had a situation a couple nights ago, where I could see little dude was like, drifting fast down, and I assume I'm watching the arrow and it's like, my night off. It's Friday. The kids are gone. I've had them for like a week and a half. And I'm like, Yes, I'm gonna chill out. And I'm, but I'm looking at the Dexcom. And I'm like, he is dropping seven points every five minutes. And at like, 100 Or maybe it was like, he was at 110. And I was like, He's gonna need uncovered like snacks and texted no response. He starts dropping down to 90. I was like, hey, carbs, nothing. 20 minutes later, he's at 80. You know, carbs? carbs, carbs. No response. It's 11. Bile. It's about 11 o'clock. I ended up just calling my kid because he has a iPhone now for the Dexcom. Yeah, I call him on FaceTime. I'm like, Dude, you need Have you looked at your your number. He's like, what? Because he's playing video games. It's 11 o'clock at night, but she wouldn't be awake at my house. 11 o'clock at night. I said, look at your Dexcom he's like, Oh, I'm 68. I was like, yes, we need some carbs. Okay. So he goes in, he got himself some carbs. So I was like, alright, so I figured out i'll just bypass. You know, I always gone through the exe to try to do this stuff. And I was like, okay, you know what, I'm just gonna go straight to my kid.

Scott Benner 39:00
Yeah, he won't, and that your ex won't care. No, he'll be happy to be out of it. Yeah, I wonder if I see through similarities here. I wonder if not being around while the while the while your son's growing up. makes it so that you don't have those moments along the way. I don't even know how to like describe those moments. But moments when yourself becomes less important when you start to see a bigger picture about the kids and what they need and how much time that takes and you where you have to make that thing in your head where you go, Okay, there's this thing I enjoy. I used to play this game or I used to do this, but I can't do that anymore. I don't have enough time. Like I used to play video games when I was in my 20s too. And I didn't play the video game in forever. Like decades, probably. The closest I come to a video game is like walking in my son's room and going oh my god, this is so realistic. I'll stand and watch it for a couple minutes and I'll be like, that's amazing. And then I'll ask him a couple questions. And then I leave because I'm an adult.

Candace 40:01
Yeah, he hasn't gotten he hasn't had that. I don't know, like, there was something you know, and I'm sure a lot of, you know, yeah, you just have this transformative thing, right? Where like the center of the universe changes from you to them, and that he didn't happen. And so he loves them. And they're great. But he doesn't see that he sees, like, all the extensions of him and how much they're like him and, but he doesn't really see them. And they it's the 15 year old doesn't notice it as much. But the 11 year old does will come home and he'll be like, I don't feel important. Or he was doing work all weekend, or I want to go back I missed him. And I was like, oh, but you just spent all weekend there. But like he's like, you know, we talked about having a loved battery. I'm a therapist. So I'm like, how's your loved battery? He's like, it's empty. And it's like, they're not getting the interaction. They go over there. They sit in a room and they play video games, and yeah, they get fed. And but like, my ex has never taken them on a trip. Like, not like to cabin or weekends anywhere.

Scott Benner 41:06
So it's like you're cuddling them for the weekend. every other weekend? Yes, yes. Yeah, I'm sorry. I didn't mean to be harsh. But. And, and he doesn't. It's interesting, because he doesn't have the time in the simulator, right? Like if if, if the 10,000 hours thing is anywhere close to being right. You've got 30,000 hours, and he's got 300 hours? Yeah. Ah, okay. And that's going to work out the same way for the diabetes. Because I'm always saying, you know, I know we don't want things to go wrong. But you almost need them to go wrong, so that you can see what wrong looks like. So you can figure out what, how to get to right. And I know it's a weird thing. But you have to have a lot of experiences over and over again, meals after meals after meals. So things start making sense, and aren't having those experiences either. So you're you're coming at him with, Hey, listen, I see that the pitch of this line tells me at 110 that he needs a snack and he probably wants and goes to kids blood sugar's 110. She's out of her mind.

Candace 42:06
Exactly. I'm like, I'm just like, you know, the over protective helicopter Jewish mama who's like intruding on his weekend?

Scott Benner 42:12
Yeah. And I tell you a secret about boys. Once you stop showing them your soft parts. They don't listen anymore. Yeah. That's really the only

Candace 42:21
control you have over man is that there's no concern that's not happening.

Scott Benner 42:25
If they think something may one time at some point, ever again, happen. Like I'm thinking that Friday night, your poor boyfriend's sitting there going, I'm not having sex.

Candace 42:36
You know, he's pretty worried too. And he's frustrated. I mean, we've both been up at like 1am. And where we see little dude go in low. And we're like, Is somebody going to give him carbs? Is someone coming in, and we just see him bouncing around 7068 70. And it's like, 2am. And we're like, do we call him and like, sometimes we have sometimes you've texted and like, I don't think there's times where he's treated him. And he didn't go really well. He was uh, he ended up fine. And it's just like, and I've asked the ex, I'm like, Did you wake up? And he's like, Oh, sometimes I can hear my alarm. And I'm like, okay, then what do you do to fix that? Hey, there's an app called Sugar mate that calls you Hey, do you need to get like a speaker, but he can't get the urgency. He just doesn't get it.

Scott Benner 43:23
I have two things. First thing is you just sort of proved my earlier hypothesis by saying that, in that scenario, on a Friday night, when your kids are gone, your boyfriend who has been with those kids for 10 years, is worried about them, like a father would be? Absolutely he's not. He's not just sitting there thinking like, this is the weekend off, where we have a bunch of sex and go out to dinner and stuff like that. Now he's actually kids. And he's been with you for 10 years, who doesn't expect a bunch of sex anymore anyway. And that's the other thing. And so then the next thing is this. Are you learning anything from watching the non interventions? Like Have there been times where you're like, Oh, I was wrong, we didn't need to intervene.

Candace 44:06
I mean, I guess since I've seen some lows, that I'm guessing we're not treated because there was no bounce back where he just kind of drifted in the 60s and then kind of settled back in the 80s, where I would have treated it in the middle of the night. And I was like, oh, okay, like, that one's alright. But I would I just wouldn't have risked it. You know, I would have given them some carbs.

Scott Benner 44:26
I'm not asking you to, I'm just saying if the experience is going to happen anyway. Yes. As well learn from it. Yeah, learn try to learn from because there are times where you just have to have the balls to not do anything. Yeah, a 60 blood sugar's not that time. I'm not saying that but but you're there is something to learn from all of the experiences and from all the data, so don't waste it. I mean, I mean, you're gonna be angry and upset and all that stuff. Yeah.

Candace 44:52
And the higher in the higher blood sugar is the one and then and I and I used a lot of the language you had talked about, I was like, you know, I had texted him at different points. I was like he's running at like, 230. And I was like, you know, when he's over 200 We are taking minutes off his life. We are losing fingers and toes. We are losing eyesight. Like, let's not do this. And it's like, it doesn't land. It just doesn't.

Scott Benner 45:18
Even he can't be scared by it. No. Yeah, it's the height is tall.

Candace 45:23
It's the height and suits all

Scott Benner 45:25
and you get over like six, three. You're just like, I'm a superhero. Yeah,

Candace 45:29
he's six, four. So

Scott Benner 45:30
there you go. Yeah, he just like I'm a superhero. Like, it doesn't matter. I hear this. I don't like, Okay. I'm not anti tall people. I'm just saying. People got to find out how it feels to be five, nine. You got to live like that a little bit.

Candace 45:44
You're the same height as my boyfriend. That's funny.

Scott Benner 45:47
I'm the worst height. I'm not tall. I'm not sure. That's really terrible. I'm tall. You know, the odd thing is, you know, I'm taller than most of the people I meet. Yeah, I would imagine. And then I meet one person who's six, two, and I'm like, Oh, I'm a baby. That's nice. I don't like meeting people that I know. If we got into an altercation, they could grab me by my face and throw me that doesn't feel that's something you worry about. Sometimes. You see those big tall people, they look so strong.

Candace 46:19
I don't know. I'm five, five. So and I've everyone my family is really tall. So I've always been super short. So I'm kind of used to being the short person to make my 15 year old is already six one. So I'm kind of already getting, you know, everyone's getting taller than me in my house. That's

Scott Benner 46:32
fair. That's all. That's all I'm saying. I hear you. Oh, maybe tall people have problems we don't know about. I think that's probably true too. Tall people problems. If you're all your problems. I wish this wasn't just the diabetes podcast. Because right now I'd say if you're tall, you have problems, please contact me to be on the show. I would love

Candace 46:50
to call in Tell me all about how you can't find pants that fit?

Scott Benner 46:53
Yeah, listen, if you have type one, and you're really tall, we'll find something about diabetes to talk about in between me going. So tell me what it's like? Well, I

Candace 47:01
had a type one boyfriend in my 20s. And he was six, six. So it didn't turn out well. So.

Scott Benner 47:06
So you're bringing up a question that I had a minute ago, I lost and I brought it back. And if you don't want to answer, I guess I understand. And it's okay. But why did you guys get divorced? Did you hate each other? Were you arguing all the time?

Candace 47:21
Um, no, we were arguing a lot. So you know, I had just had little guy 10 months before we were going to couples therapy. And I guess I was seeing the therapist on my own too. And I was talking her and I was like, you know, I'm somebody who like, holds everything in. Like, I don't tell her about my feelings. Like, and this is the most I've talked about myself forever. I'm a therapist, I talk to other people all day long about their stuff. And I told the therapist, like I just want to tell my ex like all the resentment and all the things that I've been holding on to for the past few years. And, and she's like, I think if you say that it's going to be the end of your marriage. And I was like, no, like, we've come in here week after week. And my ex is like my heart murmur. And I was like, I have to have my turn. So we go into therapy. I say my piece we walk out Max is like I think we should be done. Oh, oh, oh, man. You know, and it wasn't.

Scott Benner 48:19
Did you want Did you want that?

Candace 48:22
I wasn't soul crushing. I mean, I was like, Alright, I don't know how to be a single mom and I was crushed. But I wasn't devastated. Like it wasn't good for us for a long time. He was checked out the whole time and I don't think that was gonna change and so yeah

Scott Benner 48:47
was he cheating? Me cheating?

Candace 48:49
No. I don't know. He there was a there was a I don't know if it's real cheating. There was a girl online that I think he was talking to you who lived like halfway across the country. So not yet achieved in real life yet?

Scott Benner 49:00
Not yet. Yet needed a plane ticket? And

Unknown Speaker 49:04
exactly. Plane ticket. Yeah. All right.

Scott Benner 49:07
That's sad. I didn't mean to laugh. It's

Candace 49:11
sad, but it wasn't like some big catastrophic explosion, which was why it allowed us to be able to be like, Okay, we have this baby in this, you know, preschool kid, how do we, you know, make this as best we can for them. Alright, let's like, you know, we didn't have lawyers, we got to, you know, we also were broke. So, not a lot of fight about so we got a mediator and like, alright, let's work this out, you know,

Scott Benner 49:32
Frosted Flakes, and I'll take the Mini Wheats, and we'll get it exactly.

Candace 49:35
There's not a whole lot to fight about. So you know, it was really just kind of ironing out visitation. And since a little one was so young, it was like, Okay, come over two times a week, hang out. I'll take off for a couple hours, come back. And then every other weekend, he'd come and like, stay here and I would go to my mom's house and then early on, I met my boyfriend and I go stay at his house and you know, then he finally got his own place where he could bring the voice to after a few years.

Scott Benner 50:00
Whether Was there ever any like regret, like, did you ever cross in the doorway when he came over to take his turn? And you think to yourself, like, should I note? No, never? No. Did he ever say we're doing the wrong thing? No, no. Interesting.

Candace 50:17
No, I think it was pretty. Like we're good. We're let's let's not do this anymore. Yeah. You can ask for

Scott Benner 50:25
what? I don't want to say this in case your kid hears it. But we got my youngest. My kids never gonna hear the youngest one like, hey, maybe we can fix this with the baby. Where was the mistake? Sorry.

Candace 50:38
Oh, no, the youngest. So it was kind of like we just had. So we had a few rough years with the my older one. And then we have like, six months, or like stuff was good, like, or at least good enough. And I was like, I really I grew up as an only child. And I really wanted my kids, my kid to have a sibling. And I was like, Look, we should have a baby. And that would be cool. And he was like, yeah. And then it was like, a couple months later, like, oh, maybe this isn't a good idea. And he or she got back on birth control. And by that point, I was like, oh, and I'm praying, okay. And then surprisingly, my ex at that point was really excited. He was really excited to have this baby. It was a complicated pregnancy, he had a lot of kind of mental health issues during that point. So I was very alone. During the pregnancy. I had gestational diabetes, which was actually one of those things that I felt like in the hospital, I was like, to the nurses, I had gestational diabetes, and I give this to him, you know. But like, he never went to a single appointment when I was pregnant with little guy, and I should have, like, so like, things really haven't changed. Okay, now.

Scott Benner 51:44
So. All right. We haven't been making light of a man with mental illness for the last 50 minutes. Have we? No,

Candace 51:52
no, he's a functioning like person in the world. Like he is not like severely anything. He had a struggle during that time period about work and a bunch of other stuff kind of colliding. But he is an okay person in the

Scott Benner 52:05
world. I don't need his details. I just wanted to make sure that like, yeah, that kind of like high level and I was like, Oh, come on, like, say that at the beginning.

Candace 52:14
He was and I wouldn't be so frustrated, right? Is this functioning guy? He is smart. He is capable, and I can't get why he can't get this.

Scott Benner 52:24
Can I ask you what it felt like when you were pregnant? He was excited. And you were halfway between? Oh, I was looking for my birth control pills again. Is that a weird feeling?

Candace 52:34
Yeah, I mean, it was definitely it was kind of like this. Oh, crap. Okay, like Pavitt. Alright, we're gonna do this. And like, you know, and then once you know, baby's there, it was like, All right, like, I'm gonna be excited about this kid right now.

Scott Benner 52:49
No, I'm not. And this is no reflection on your son. Obviously. I'm just trying to talk to you like an adult. So totally. Yeah. So you, he doesn't I don't

Candace 52:58
think there was a whole lot of like, we're, you know, oh, like regret, or I think it was once I realized I was pregnant. It was like, Okay, this is what's happening. And, you know, I'm all on board.

Scott Benner 53:06
Gotcha. I'm going through my questions in my mind, that one was completely inappropriate. So that won't happen. And you all have no idea how many questions I don't ask, during the course. conversations where I'm like, I wonder about No, that won't work.

Candace 53:26
I certainly love ask people. Yeah, but their loved ones all day long are lovely, nice

Scott Benner 53:30
people that listen to this podcast, too. And they don't want to Oh, I'm sure they don't want to hear my darker thoughts. Like, I'm trying to

Candace 53:37
just slap an after dark, you know, title on this. And that's why you want

Scott Benner 53:42
to wait for that now. Okay, we would have cursed I feel like you and I would have cursed a lot if this was an after dark episode.

Candace 53:48
Definitely, I am trying so hard. Doing well,

Scott Benner 53:51
you've cursed once. Thank you at the 4546 mark. But I made a note so I can go back and take it out. I'm sorry. Also, I burped around 14 minutes. So I'll check for that. was very quiet, but I I'm aware of it. So now I'm going to go back and check for it. If I don't take it out, no one will ever know. But if I leave it in, maybe I should just leave it and see people can hear it. It'll be it'll sell a rumble. But it's nothing. Anyway, that's not the point of this conversation. The point is, you're screwed because this isn't getting any better.

Candace 54:23
No, it's really not. It's like this limbo. I mean, the pump has helped in certain ways, because he's not having to do the math anymore. Like the math thing. I actually was really blown away by that because I'm like, the most math challenged person. And I thought like, of course, he's gonna get the math part like and the fact that he couldn't, I was just like, what is happening? So the pump has definitely made it easier. Like, you know, there's less to input. We have, you know, the control IQ. So there's a little bit more management happening, but there's like, he's still not getting the nuance like, uh, you know, I tried to talk to him about Pre-Bolus sake, you know, and it's like, crickets? No like, if Yeah, if you're having a pizza dinner, why don't you Pre-Bolus 1520 minutes at a time, you know, like,

Scott Benner 55:10
when you call him a computer person, is he professionally computer person? Are you saying he really like has a great gaming system that he put together? Like, what is it versus Yeah,

Candace 55:18
he's like a professionally that's like what he does really?

Scott Benner 55:22
Yeah, but not math related or doesn't like, no,

Candace 55:25
no, it's all like some weird like, I don't know, it's like, I mean, he must be smart. He's like, in some stuff. I don't even understand what it is. Like he hangs out with people from Silicon Valley. So he's telling me about all the important people he's talking to.

Scott Benner 55:40
The one of them know how to tell him to Pre-Bolus I

Candace 55:43
wish they would. I wish they would. Well, I think our nurse has called him somewhat recently, when we when we switch to the tandem, I was like, we had set up the tandem training separately. I was like, we need to be trained separately. I was like, because my boyfriend and I will sit there will ask question after question after question. And he'll just sit there quietly and not ask anything. Right. So I was like, can you train us separately? Okay. You know, and then I talked to the the educator, I was like, how did it go? Did you think he got Oh, yeah. He told me he read the manual. He totally understood that. I was just like, Oh, crap. Like, there's Yeah, no. And he didn't know. I mean, that was the first set change was like, is that the cartridge thing? Okay,

Scott Benner 56:24
if I read the manual, the manual was helpful. I wouldn't have a podcast. So because there's manuals for everything. Yeah, uh, so the is the plan just to get the algorithm up and running so well, that you can circumvent him and just text your son? Like, yes. Do you think your son will get to a point because he's still pretty young, where he'll take on some responsibility for this piece when he's with his dad?

Candace 56:48
I think so. I think the last few weekends was the first time where I've directly texted him, and he like, actually answered his phone, which was great. And he went, you know, I just, I packed his backpack, and I have, you know, there's a couple bags of the, you know, 15 grams Skittles or whatever. And so like, I know that he has those. And so like, at this last weekend, I was like, Hey, go grab some Skittles. Okay, so I think like, my plan is just to like, yeah, circumvent the x, just go straight to the kid. You know, it's a little frustrating, actually. I mean, I guess I can actually text him now about, you know, doing a correction, because because we, you know, we do it here all the time, where if he's running high, and like, you know, control IQ isn't whatever, I'll say, you know, can you give yourself a correction of a couple units, and he can do that on his own. So I just, I think I probably call them access house and say the same thing now when he's running high, because when he's running high there, I can text Max and be like, you should really check and do a correction and may or may not happen, but I could probably just go straight to my kid now.

Scott Benner 57:45
Yeah, but then you really don't get any downtime at all. No, I

Candace 57:49
don't. Yeah,

Scott Benner 57:49
I mean, I get downtime. Like, I can say to Kelly, like, I'm gonna go do something now and then need to pay attention, Arden. And, yeah, generally that happens. So. And then I have my time, even if it's just a little bit like an hour, like, you know, even like, going grocery shopping or something like that. Like there's one store that I can't get service in, and I'm, I'm, like, so grateful for that because I leave and I'm like, Hey, I'm not gonna have cell service. Don't

Candace 58:15
forget, you're like, hands up in the air. Like, I'm

Scott Benner 58:17
free. And they're just like, okay, like, yeah, excellent. They'll pay attention to it now. I don't know. Like, can I ask you as crazy as it sounds an hour into it? Like, why did you want to come on?

Candace 58:32
Um, I think I just I had scrolled through a lot of podcasts. And I looked for all the divorced ones. So I was like, There's got to be some other people who are got to deal with this. And like everybody that you had had previously on, we're like, got along, and we're communicating. And the kid was doing well in both houses. And I'm in a bunch of like, you know, moms, a T one groups. And there's other moms out there who are posting like, you know, my kids at the axes, and they could see the blood sugar, and they're not responding and what do I do? And I'm like, Okay, there's other people like me. I mean, I think I wrote in my email, I was like, I don't have the answers. But I know there's got to be a bunch of other people like me are like sending their kid off every other weekend and like, have no control over what's happening. And it's like, such a helpless feeling. And I think this was probably a way of me feeling like, I can do something. This is something I can do. I have no control there.

Scott Benner 59:22
I can tell you after being around this space, the way I have been for as long as I have been, it is one of the most frequent and significant concerns for people is that one of the spouses in a divorce relationship doesn't do anything, and then it's almost torturous, like the other one has to watch it happen. Or if you don't have a CGM wonder about it happening. And then they don't have this communication. They can't even quell their fears. They live in this heightened sense of like, kind of like horror the entire time that kids gone. Either seeing what's going going on and knowing it's bad for their health or Yeah, imagining that's what's happening and not even being able to see.

Candace 1:00:07
Yeah, it's terrible. It's a terrible feeling. And it's like, I run anxious anyway, and like, it does not help at all. Like, I'm just, it's tough because I used to have my weekends off. And I was like, I can go be free. The kids are gonna be there till Sunday, and like, I can go do my thing. And now it's like, I'm looking at my phone, you know, and I'm texting and I'm worrying and it's sucks. And it's, you know, diabetes is exhausting, and a full time job as it is and then having another weekend where it's like, I'm still on call

Scott Benner 1:00:37
that I run nervous. And I'm imagining, have you heard Roxy in an earlier episode? Like, Yeah, girl with her sister the entire time that you're talking like, Roxy is gonna love this episode. And then you just said I run nervous. And I thought that's something Roxy would say about herself.

Candace 1:00:53
Run. Yeah, run anxious and nervous. Nervous.

Scott Benner 1:00:57
Anyway, I so you're in. Every I'm trying to put myself in the shoes of everybody who's ever written a note like that. And I don't know how you make another person care. Like to me, if you came to me and said, Look, when our kids blood sugar is like it is when he's here. Or when she's here. This is how she feels. This is how he feels. And when you put him in this situation where it's bouncing around, it's getting high, it's getting low, literally changes who they are, like, if you said that, hey, I'd be like, Oh, okay, I'll fix it. You know, I didn't know that. But when you're in a situation where you'll say that to someone, and they'll just go, Ah, I'll get to it. I don't know, I don't know what to do about that. And I don't know that it's it just it seems kind of cruel to me to like, bounce the kid from, from well managed to don't manage, and back and forth and back and forth. Because at some point, your your axe has got in anybody's axe has to realize that that one day that kid's gonna go, I don't want to go there. I don't feel well when I'm there. Like, it's gonna ruin that thing. But maybe some people just don't have that kind of parental connection. Maybe that's just

Candace 1:02:12
No, I don't, it's for me, like, it's, I think for my little guy like, he, I don't, he doesn't feel high. When he feels when he's high, he doesn't feel different. I don't necessarily see any behavioral changes. And he obviously knows when he's low. And when they're at my axes, they literally don't leave the house, they are sitting in a bedroom playing video games. So I think he doesn't feel it. If he's super high, where if we were here, and we were out, we're out doing stuff. And so he might notice it a little more and retreating it you know, like, if he's high on like, We're going swimming, right? Like we're gonna get you dropped down. And his house like, I think he's just so like, I mean, I don't think they kids both have kids are like, could be completely addicted to video games, like they would never leave their house and they can push play, and they wouldn't even eat if he didn't like make them. So I think they're perfectly content to be there and play video games. And I don't think that my ex is engaging enough with them to notice any changes behaviorally, I think, you know, he checks in online, we feed them and you know that maybe they hang out and have dinner. But you know, that's probably the extensive it

Scott Benner 1:03:15
hard for me to think about that. Because I'm just gonna say something, it's gonna be embarrassing, but my son's leaving for college in four days. And going back for his senior year. Now, he's been here for a while because of COVID. And last night, he was in the kitchen. Last night was one of those weird nights where I was like a shorter cook. Nobody wanted the same thing. And so I spent like three hours it felt like from like five to eight o'clock cooking for different people. But everyone was downstairs waiting for their food and doing something else at the same time. And I'm just going to tell you that I liked that we were all in the same place. Yeah, and it's lovely. And then it got done. And I I was like, I was just hot from cooking. And I said to Kelly, like, I'm gonna take a shower before I go to bed. And I will as I was walking up the stairs, I had this fleeting thought, like, I don't want anyone to think that it burdened me for hours or you know that I was crumbling at my core. But I was walking up the stairs and I thought, well, maybe I should just stay downstairs a little longer until cold goes to his room and then I'll take a shower, because I don't want to waste this time where we're together when he's going to be gone in four days. Yeah, I totally get it and I don't understand how somebody who's only seeing their children every other weekend to begin with wouldn't make that weekend as special as possible and together as possible. I create like fathom what you're saying which is what makes it even more difficult and I'm imagining in a classic relationship where this is happening where the man is acting more the way your ex is. And the mom who is not just been raising the kids but now has been in trouble. Mind in this diabetes stuff like I would imagine you couldn't put it into words, if your life depended on it. Like, why is this happening? Yeah, there's no way for you to know.

Candace 1:05:09
I know, it's, it's really hard to make sense of it because I know he loves them. But he just engages with them in a way that is doesn't make sense. Like, I don't get it, we have so many things that like me, my boyfriend, and my two boys all do together, you know, whether it's like, playing, you know, cards, or, you know, we, I mean, yes, we drag them off their computers, we're gonna go and do something, we're gonna go take a walk, like, we go on vacation. And I understand like, you know, I think those moments are so special. And like, I feel like they're fleeting that the fact my 15 year olds willing to hang out with me, I'm hanging on to that, you know, as long as possible. Anybody who's not shunning me

Scott Benner 1:05:50
yet anybody who doesn't think that's gonna come to a grinding halt is not paid? Yes.

Candace 1:05:54
Like, I can see the ticking, you know, the fact that like, in any moment,

Scott Benner 1:05:59
and maybe, look, let's just just take ourselves out of who we are for a second. If that's not how a person feels that I understand this. I understand not caring if they play video games all day, because I don't feel like a person who wants to be around all the time. Together, maybe your husband and your ex husband didn't have that with his father, whatever. But I didn't know that was my father either. But that's I mean, the point is that some I think some people just aren't, aren't wired that way. And I don't think they're men necessarily. I think it could be women as well, like some people are just not parental. You know, like, in that way. I think that it

Candace 1:06:35
I think it's, it's something like about being related. It's not just parental. I think it's something about the way he engages with people in general. Like, I think he struggles with people and friendships and he doesn't have a lot of close friends. I think there's something about the way he relates to people and engages with people. That has some obviously issues. Yeah, that's,

Scott Benner 1:06:56
that makes me sad. Yeah. And I get I understand, it happens, and I don't think I'm perfect at it. I think there are probably times where I'm around my kids, where they're probably like, Oh, this guy get him. Of course, I'm not quite getting it as good as I could. But at least, I always feel like at least when it's over, and they're off living their own lives. And I'm hopefully old and alive, that I won't regret the time we spent, like, I might say, I wish things would have went differently. But I know that I I was there and I tried. And that

Candace 1:07:29
yeah, you're never gonna wish that you had like less of that.

Scott Benner 1:07:32
Yeah. And that they'll look back and say, you know, not a perfect person. Always. They're like, Oh, always available. And I mean, I think that's just what I'm shooting for. I don't know this whole thing's weird.

Candace 1:07:48
Yeah. And it's it's just, I get I guess, I don't know why she was so surprised by it. I think I shouldn't have been but I still was, I guess I had hopes with the diabetes. Like, yeah, like, he's gonna be responsive. He's gonna do the right thing. He's gonna, like really be involved. And it's like,

Scott Benner 1:08:06
but the truth now just went exactly the way it was gonna go. It was Yeah. So yeah, I was I think I was naive to think anything different is the answer. Don't expect things from people they don't have to give.

Candace 1:08:18
I don't know. I don't think there's an answer. I think all you can do is, I mean, I've worked really hard to have a good relationship with him and try not to be judgmental and to be compassionate and put out there that this is hard. And that I'm like, I mean, I bet I'm open 24/7 You can call me you can text me like, I'm happy to talk to you. And, and I don't, I don't know. I just I don't know how you get the urgency into somebody I know that the nurse call them and explain sort of the dangers, especially once we got to the pump of like high blood sugar and what you need to do and you know, but I still don't think you necessarily gets it.

Scott Benner 1:08:53
Yeah. Okay. Oh, there you go. I'm gonna end on. I don't think you can expect things from people they don't have to give. Yeah, and you're gonna have to adjust and work around those things. It's just you're you're asking a flower to be a rock, vice versa, whatever. Just not gonna happen. Yeah, so she, jeez. Well, this was fun.

Candace 1:09:15
That was fun.

Scott Benner 1:09:19
Candace, just would have done what your mom told you. This all would have been okay.

Candace 1:09:24
Oh, I just want to marry a Jewish boy.

Scott Benner 1:09:28
I don't even know if he ever said that to you. I just imagined that while you were getting.

Candace 1:09:32
She actually did. I mean, I think it was kind of like, oh, yeah, I think she'd probably expect that I wasn't going to marry a Jewish boy, you know. And I feel very lucky. I have my boyfriend who is like this wonderful father figure to the boys and they love him and he fills up all those cracks that are missing. You know, like he's the one who shows up to every conference and shows up to everything and goes to the doctor's appointments with me and has his notebook out with all his questions and you know, they have all these their bedtime routines with him. And so like they're getting that they just don't get that from the person. They really want it from the most, which is my ex like they so badly want it from him. I can see them, you know, really trying to get it and it's just not getting heard.

Scott Benner 1:10:14
Yeah, one of my brothers is a really excellent stepfather. And there's not enough praise that goes,

Candace 1:10:23
No, there's not there really needs to be like, a lot more like, even just the name like so. You know, we're not married. So people ask my kids all the time, like, Who's that? And, you know, like, we've I've tried to like, what do you want to say he is, you know, and because people ask all the time, is that your dad? Is that your dad? I mean, our doctor, the dentist, they all think that that's their dad because they've never seen the other guy, you know? And I'm like, Well, you can say like, your bone is dead. You could say he's like your stepdad like, you know, and I think they end up saying stepped out because that feels comfortable. And people know what that means. But there really isn't the name for that person. You know, weird

Scott Benner 1:10:57
things step that I wonder what it means. Is it like a step away from my dad? Like step dad meaning homozygous? I'm googling Google way. I know another Stanford. I know, we're just the word come from Google. Don't just tell me how can you tell me stepdad means another term for stepfather? Like that is not valuable for redundant on my a man who is the husband of or a partner of one's mother after the divorce or separation of one's parents? Or the death of a father? Yeah, but where does the word come from? Like, why did somebody first say stepped out? Step? One, seven. away, right? Like that's the Yeah, how it makes you feel?

Candace 1:11:36
Yeah, and it sucks because he does not feel that way. He feels like they're that

Scott Benner 1:11:40
he's the top step. Yeah, totally calm top step that I will. Please don't

Candace 1:11:46
actually I call him the phone baby daddy who likes faux that's actually his title.

Scott Benner 1:11:53
Okay, this I would have left you till now. I'm just kidding.

Candace 1:11:57
Thank you, God. I just want to leave you a name that you'll have to bleep out

Scott Benner 1:12:05
to leave on a laugh canvas. That's all. Thanks. Yeah, you were very kind to do this. It's uh,

Candace 1:12:14
yeah, no problem. I felt like there had to be other people out there like me, you know, like, it's hard. No, he's not like, my ex isn't the devil like, right? He's not this bad person who's doing bad things out in the world. He doesn't care. It's like, what do you do with somebody who's indifferent? And I know like I said, I don't have the answer. They just know that I'm living in it sucks.

Scott Benner 1:12:31
Yeah. Okay. Can I ask you one more question, but I'm gonna stop the recording. Okay, yeah. Did your ex have a huge

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