#394 Perspective Ceiling

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

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

Scott Benner 0:00
Hello friends, welcome to Episode 394 of the Juicebox Podcast on today's show, car is here, and khari has wisdom beyond her years. More on that in just a second. This episode of The Juicebox Podcast is sponsored by Omni pod, the tubeless insulin pump, you can find out more about the Omni pod and receive a free, no obligation demo of the pump in your home by going to my omnipod.com Ford slash juice box. Today's show is also sponsored by the dexcom g six continuous glucose monitor. dexcom.com Ford slash juice box is where you're going to learn more about the device that we use here in our home to make great decisions about insulin.

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

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

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

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

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

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

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

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

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

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

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

Unknown Speaker 3:12

95. Huh? You have me by a year.

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

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

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

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

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

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

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

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

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

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

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

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

Unknown Speaker 7:25
gotcha.

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

Scott Benner 7:35
yeah, I see that.

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

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

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

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

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

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

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

Unknown Speaker 9:11
I know nobody get bored.

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

Unknown Speaker 10:35
Yeah.

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

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

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

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

Unknown Speaker 12:25
constantly. Yes. Yeah.

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

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

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

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

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

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

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

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

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

Unknown Speaker 15:55
Boy, boys.

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

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

Unknown Speaker 16:04
Yeah, I see.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Unknown Speaker 27:56
years ago, you know?

Unknown Speaker 28:00
There's no you

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

Unknown Speaker 28:07
We don't know.

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

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

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

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

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

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

Unknown Speaker 30:03
Yeah, yeah.

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

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

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

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

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

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

Unknown Speaker 30:59
Like, right, right?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Unknown Speaker 40:29
No.

Scott Benner 40:30
Draw out your words. So

Unknown Speaker 40:32
do I sound like that?

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

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

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

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

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

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

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

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

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

Scott Benner 42:13
drunk drunk the average backwards.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Unknown Speaker 47:24
Yeah.

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

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

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

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

Unknown Speaker 48:26
yeah, round down?

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

Unknown Speaker 48:30
yeah,

Unknown Speaker 48:32
it'll be fine.

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

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

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

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

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

Unknown Speaker 50:31
Like, Oh, God,

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

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

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

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

Unknown Speaker 51:07
Oh.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Unknown Speaker 56:12
oh, no, no,

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

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

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

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

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

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

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

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

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

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

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

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

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

Unknown Speaker 1:00:13
Right. I

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

Unknown Speaker 1:01:10
Sympathy,

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

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

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

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

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

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

Scott Benner 1:02:12
syndrome gave me

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Unknown Speaker 1:08:44
No.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Unknown Speaker 1:15:18
Alright, so

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

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

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

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

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

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

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

Unknown Speaker 1:16:32
Oh, no.

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

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

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

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

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

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

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

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

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#393 After Dark: Bulimia and Depression

ADULT TOPIC WARNING

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

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

+ Click for EPISODE TRANSCRIPT

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

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

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

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

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

Anonymous Speaker 2:18
Yeah, just about were you

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

Anonymous Speaker 2:24
I was 17 as

Scott Benner 2:28
a senior in high school.

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

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

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

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

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

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

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

yeah, so it wasn't,

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

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

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

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

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

Anonymous Speaker 4:46
No, no. Right.

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

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

Unknown Speaker 5:16
the babies.

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

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

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

Anonymous Speaker 6:35
So everyone has a different

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

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

my problems would go away.

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

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

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

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

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

Anonymous Speaker 8:28
Um, it becomes

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

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

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

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

Unknown Speaker 9:48
become a good diabetic?

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

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

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

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

And maybe saw some other signs on Oh, yeah.

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

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

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

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

Anonymous Speaker 13:02
So the clinical diagnosis would be

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

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

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

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

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

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

Anonymous Speaker 15:47
no, because it's

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

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

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

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

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

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

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

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

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

people who are hurting possibly supporting each other

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

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

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

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

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

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

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

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

Unknown Speaker 20:05
a,

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

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

Unknown Speaker 20:31
No, is that and just

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

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

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

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

just general stomach issues, digestion issues.

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

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

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

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

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

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

Anonymous Speaker 26:27
Yes. Can you

Scott Benner 26:29
tell me how?

Anonymous Speaker 26:31
Yeah, um, so

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

Unknown Speaker 26:55
um,

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

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

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

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

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

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

Anonymous Speaker 30:26
married, happily married?

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

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

they were in denial.

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

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

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

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

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

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

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

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

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

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

Unknown Speaker 34:48
So

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

Unknown Speaker 34:58
the

Anonymous Speaker 35:01
The goal is to,

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

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

Anonymous Speaker 35:57
Yeah, so, um,

Unknown Speaker 36:01
um,

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

Unknown Speaker 36:15
So

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

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

for example,

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

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

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

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

Unknown Speaker 39:17
So, um,

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

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

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

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

Unknown Speaker 42:02
Yes. Okay.

Scott Benner 42:04
How do you do that?

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

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

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

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

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

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

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

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

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

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

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

Anonymous Speaker 49:42
or something.

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

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

not underweight. But I'm towards

the lower end of a normal weight.

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

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

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

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

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

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

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

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

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

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

Unknown Speaker 52:39
Um,

Anonymous Speaker 52:41
so, I

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

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

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

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

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

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

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

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

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

Scott Benner 56:12
Prozac? Is that helpful?

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

Unknown Speaker 56:21
a

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

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

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

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

Unknown Speaker 57:41
So

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

where

Unknown Speaker 1:07:32
I

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

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

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

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

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

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

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

Anonymous Speaker 1:11:57
Yeah, worse.

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

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

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

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

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

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

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

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

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

Scott Benner 1:15:09
I see are

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

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

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

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

Unknown Speaker 1:16:04
So

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

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

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

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

Like, like, That's ridiculous. He is

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

Unknown Speaker 1:17:15
And,

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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#392 Advice for T1 parents from T1 adults

Adults living with type 1 diabetes share their thoughts with type 1 parents.

From the Juicebox Podcast private Facebook group

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 their favorite podcast app.

+ Click for EPISODE TRANSCRIPT

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

Scott Benner 0:00
Hello friends, welcome to Episode 392 of the Juicebox Podcast Today Show will be brief, but full of great information. Let me explain while we play some music.

This is going to come to a surprise to an but an posted on the private Facebook group a simple question. She said to the T one DS in the group. What advice would you give to us parents? Like what things did your parents do? Well, and what do you wish they did differently? And I thought, this has got a chance to be a good post.

Unknown Speaker 0:48
And I'll be damned if it wasn't

Scott Benner 0:49
so good. In fact, I'm gonna read everyone's answers to you. I love that the podcast attracts as many adults living with type one as it does parents of children. It might really honestly be the only place with such a great blend. And I love how they help each other. The private Facebook group, by the way, if you're interested is called Juicebox Podcast type one diabetes, there's a couple of quick questions that you answer to, you know, prove that you're a human being. And then you're right in and talking with well over 6000 people, just like Anne, and the people who answered these questions.

Before we get started, I'd like to remind you about the T one D exchange. You can be heard and support the Type One Diabetes community while you help drive research that really matters for people living with type one. The T one D exchange registry is a research study designed to harness the power of individuals with Type One Diabetes. This is a nonprofit research organization that is dedicated to accelerating therapies improving care for people living with Type One Diabetes. they translate real world experiences into real world solutions that make your life easier. The registry is a research study designed to gather real world evidence firsthand, easily and quickly. The questionnaire that you'll fill out can be done on your mobile device from the comfort of your home. And since Type One Diabetes is a chronic condition that people live with their entire lives, participants can complete the questionnaire annually to help researchers understand surviving and living with type one, this is an amazing thing you can do it is 100% HIPAA compliant, absolutely anonymous. And when you join the registry besides doing all of those things I've just listed, you end up supporting the podcast. So if you've ever wanted to support this podcast without actually spending money, this is a great way to do it and feel good about what you've done. I joined the registry. As the parent of a child with type one by the way, you have to be a US resident either have type one diabetes, or be the parent or guardian of a child. I don't think it took me seven minutes to finish. It was really simple to do. T one d exchange.org. forward slash juicebox. In just a few months, over 400 listeners of this podcast have added their voice to the T one D registry. I believe that what the T one D exchange is doing is valuable and heartfelt. And I'm genuinely proud to be telling you about it. I hope you can add your voice to the others.

Let's get to this post, shall we? Please remember while you're listening that nothing you hear on the Juicebox Podcast should be considered advice medical or otherwise please always consult a physician before making changes to your health care plan. We're becoming bold with insulin. Now back to Ann and her question to the T one DS in this group. What advice would you give to us parents? Like what things did your parents do well, and what do you wish

Unknown Speaker 4:11
they did differently?

Scott Benner 4:15
Okay, the first should do these invoices but that would be terrible. Wouldn't it if I was like amber said that wouldn't be good at all. Can you imagine if I thought to do that. Amber made a list she said at times it will seem like you have it all figured out. But other times you will feel like a failure. Don't beat yourself up long battle. She also suggest to take your supplies out of the boxes that they come in and you know find some sort of a kit or a place to put them so you're not digging through you know cardboard all the time. She says to get a little cooler bag for travel. Amber also said that Adam and Eve juicy juice has 4.23 ounces of juice in a box. Amber that's Arden's juice box as well. She uses the ones with Sesame Street characters on them. Those are her she has two favorite flavors in there. And you're right. They are terrific for not causing a rebound. Hi. Rachel said, my parents gave me a lot of independence. It was very helpful for our relationship and my self management. I was diagnosed in the early 2000s when I was five, so texting wasn't a thing back then. And I had to be a bit more independent. Always speaking positively is so important. Like saying, quote, you did so well yesterday. How did you bolos for that? Is it productive and affirming statement, I wanted to please with my blood sugars. I always thought of them as grades. She says to try to find a way to take that pressure from your children. And just think of the blood sugars as numbers, and that they have nothing to do with your child's worth or value. Also let them know that they're total badasses. It wasn't until much later that Rachel realized the incredible stress that her parents were under. While they learn to take care of her and type one diabetes. Nancy said that she's the parent of a 20 year old that was diagnosed at 19. She's found that asking things like why are you low? or Why are you Hi, is something she tries not to do? Instead, she asks, If she's okay. Often then her daughter would tell her what caused what was happening. And then she'd help her to fix it. Her daughter manages very well now she says, but in the beginning, she didn't want to think about it. And so Nancy did most of it. Never tell them they can have something to eat. I completely agree with Nancy. However, she always tried to prepare foods that were easy on her daughter that didn't spike her blood sugar's too much. And she kind of did it without her daughter knowing. And she says don't fuss when things go crazy. Just offer to help. Now even though Nancy's not an adult who's living with Type One Diabetes. I thought her comment was wonderful. And so I put it here. Thank you very much, Nancy. Amy says let them be kids, let them make mistakes so they can learn from them don't make everything about diabetes. When they get home from school, your first question should be how was your day? Not how are your blood sugar's let them choose their level of independence, and what they're comfortable with, don't force them to do everything on their own, because they will have the rest of their life to do it without your help. Amy, again, I am in complete agreeance with what you said there. I used to see art and come in the door. And I was overwhelmed. Wondering what our blood sugar was, like, Is she okay, you know, this is before dexcom share and I couldn't see it. And I just realized one day that I was seeing my daughter as diabetes instead of herself. And I made a conscious effort to change that. Lisa was diagnosed at age 10. And now it's 33 years later, she's married. for 20 years. She has three wonderfully healthy babies. And anyone seen the high fives the low sixes and all Lisa wanted to tell you was to let them dream of the future about college and weddings and kids. Don't just think that diabetes means that none of those things are going to happen. They can absolutely have any of those dreams. Thank you. Lisa Meghna was diagnosed in March of 2000 when she was about 16 years old. Take the emotion out of treating diabetes and put your love and emotion into taking care of the kids. Because diabetes is a disease. blood sugars are data. She says when your car needs gas, the tank you just fill it up. We need new spark plugs. You just put them in, but we don't get angry about it. being mad at diabetes won't help. You have to accept that this is where you're at now as parents for your kids best life. The best thing her parents did. Never let her feel sorry for herself and never let anyone else feel sorry for her either.

She wasn't coddled, no one made excuses for she says to get involved in care from day one. Even her 10 year old son knows how to check her blood sugar she says you see what Megan saying? She She wants your children to know how to take care of themselves. Meghan goes on to say please don't settle for good enough. You're still the parent and you can still empower a team to take care of themselves while pulling back the reins when needed. No different than homework or anything else. Caitlin shares that she thinks her parents were actually scared. But it would come out as anger when her blood sugar was high. They didn't offer a lot of help, but would yell at her when her blood sugar's were high. And she remembers being afraid. She says that she actively hid her blood sugar's to keep these things from happening. So she wants you to remember that while highs are not good. You can help. And being angry is not the way that started a conversation between a lot of different people. My dad was classic for this to someone else says, I think this is very common fear coming across as anger to kids and teens, it definitely doesn't help. But I'm not sure how to prevent this as a parent. Caitlin jumps back in and says, I think by naming it and saying things like, this is scary for me because I care about you. Let's focus on getting it down. And then maybe we can talk about what happened and how to prevent it next time. She said she's not talking about parents just feeling a little anxious, she's referring to being yelled at sworn at and blamed. And then not giving any suggestions for what to do or how to prevent it. Someone says they paid their kids to stay in range. It's funny. Now people are just agreeing, I'm gonna pay my kids this is the guys are adorable in here. Hold on. Someone then says they see a problem with paying their kids to stay in range. Laura comes back and speaks directly to Caitlin saying you should never have had to endure that. With all the other weights you had to bear deserve to be held, maybe cried over protected, valued and affirmed. You did not ask for this disease. after all. I so hope that things are better between you and your parents now. We all blow at his parents sometimes. And they definitely did for this one hugs and prayers. This, by the way, is a great Facebook page. You really should get into it if you're not. Marta says they never made a big deal of diabetes, they were never afraid of insulin. And her endo was the same. She said that was the good part, the bad part. They gave her too much freedom when taking care of her diabetes. She said as a team, she needed a system of checks and balances. And I have to echo this as well. I've now interviewed well over 400 people and many if not all of the type ones that I know who did not have good support from their parents, his children regret it and are sometimes suffering because of it as adults. Jeff says that at some point, you're going to need to hand over responsibility to your kid. But he doesn't know what that age is. But he thinks it's before 18 they should know how to bowls for their meals and adapt bazel settings. Jeff has had type one for 22 years. And he feels that knowledge is invaluable. Steffi comes in and says that she wants to add that she thinks children give hints to when they're ready. She said when she was seven, she decided to take care of herself. She had already learned everything she needs to know from being involved right from the start at her diagnosis. In 1983. At four years old, her parents still stayed involved. And Jeff remarks that you don't just dump it on them, you build them up to it, which is my plan. I'm just slowly filling Arden with knowledge that I don't even think she knows she has. Caroline says I was diagnosed Caroline, you wrote a lot. I was diagnosed at 16 months. And I have an identical twin and three other siblings who are all non diabetic, Lucky kids. I was not treated differently than any of them, which I know had to be extremely hard to balance. My mom had a friend who was type one who gave her some tips. One was to never say no to letting me eat if I was hungry. And she would have said yes to any of my other siblings if they asked. So a lot of times if my blood sugar was a little high, and I wanted to say a cookie, my mom would ask me to run up and down the steps for a while

or go outside and jump on the trampoline so forth. A lot of times she sent the twins with her. So I actually never picked up on the fact that it was a diabetes thing until I was in high school. And then she like offhandedly mentioned it she laughs where if she didn't ask me to exercise she'd allow me to have like one bite if I wasn't really hungry, and I just wanted to eat something because someone else was. She says side note. It really helped me to develop self control because I can literally just have one bite and be fine. It was also a very gradual transition of her handing over my responsibilities. However, I always knew what was going on. So I knew my shot, schedule, my amounts, adjustments and so forth before I did my shots. Likewise, I was always taught how to count carbs, and knew how many I was allowed to eat before I chose what I had. I was super involved in decisions about pumps, versus shots, and things like that. I honestly don't know if I have any bad things to say about my parents. And what they did regarding my type one. There were probably mistakes, but I don't remember any. Samantha was eight years old when she was diagnosed and as soon as she was ready her parents let her take the reins. She says I think I was self managing by 12. Did they help and support me? Yes. But her situation made it so that she had to express to her medical team when she needed help. She says there are going to be failures. Some of them you can foresee others you can't. But how else does one learn? She says I'm not saying hit the brakes completely. I was really mature, but take a step back give them a choice because their life and their type one diabetes, but not a type one diabetes life. I can really see how a lot of you found this podcast This is excellent. Alaina says My mother was a dietician my father a doctor, they did a really good job teaching me because the science behind the disease, so it wasn't just high BGS or bad for you. It was a Scott, it was a discussion about the small vessel damage and the eyes and the kidneys, and the effects of different carbohydrates and glycemic indexes and how insulin actually works. What was going on at a cellular level, during hypoglycemic episodes, etc. She said it made her view her body like a science experiment rather than a piece of broken equipment. And she learned at an early age how to experiment to find what worked for her. And 39 years later, she's still experimenting, studying and learning. Thank you for sharing that. That was excellent. Holly says, Go at your child's pace. She was diagnosed at two years old. She's 25 now and she has a baby on the way. Congratulations Holly. Holly Megan, a baby. Holly got her first pump when she was six. And while it was relatively new, it was up to her if she wanted one. She was completely sure, but they supported her decision. She said she was also a late kind of quote taking charge kinda kid. Her endo kept pushing her to do her own site changes. Holly adds here that she did not like herpes, endo. But the doctor wanted her to try so many different infusion sites to find something that she was comfortable putting on. I still hate doing shots on the random occasion that I have to, and she has to hype herself up to do them. We got the Dexcom. But I didn't want to wear it all the time. So we weren't for a week for so she worked for one week out of the month. Now she sees the Dexcom is such an invaluable tool. And she hates being without it. She wants you to know that burnout is real. And that at times your children will be dealing with this over their entire life possibly. So don't shove all the responsibility onto them too early. Try not to treat your kids differently because of diabetes. Let them do what they want to do sports, food etc. She says yes, there can be limits and you know measuring but don't tell your kid No. When you would tell a non diabetic Yes. If you have other kids get them involved. She says during her childhood, all three of her siblings gave her shots, slight changes, etc. She has a very vivid memory of her brother laying on the floor with her while they were waiting for their parents to get home. Because she had large ketones. Having diabetic friends made a big difference for her. When it came to emotionally handling diabetes in her teen years. It was rough. And she had a lot of unanswered emotional questions. She says I hit it more because I didn't want people to know that she says that's okay. being diagnosed is a physical learning experience, especially at a young age. But she says that the emotional side didn't hit her for a long time. And that that was harder in her opinion than the physical learning.

She had fears about the future rejection, she wondered why it was her who had diabetes. But she can happily say now as a grown mature person, that they will become more confident and be open. Susan's here with a more low carb idea. She says now you have a diabetic in the family. So the whole family changes. You can all eat differently, but those differences don't have to be made to be huge. She's not saying we can't have cake now because Johnny is diabetic. It's just you make where you order a different cake. You don't say we have we can't have spaghetti because Susie can't have pasta. You say zoodles and Pum Meeny noodles with meatballs for dinner. Just exactly as you would do if your child had a nut allergy. You know she says nobody would have peanut butter them. So she's suggesting to just make the changes don't advertise them or make her production over it. She thinks your child will thank you when they are healthy and strong as teens and adjusted adults who know how to eat well. In any restaurant situation, low carb protein packed 37 years ago, Susan says she was taught from her from day one. No more grains, fruits, sugars or starches. She's talking about all kinds of different foods here that you can use. She says if I came and cooked for you for a week, I seriously doubt you would even realize your carbs have been cut and I think This is an excellent time to point out that this Facebook group is completely inclusive, there are people in there that eat every carb you can imagine. And there are Susan, who doesn't. and everywhere in between. There's no judgement in this page. It is unlike any Facebook group I've ever seen in my life, incredibly supportive, tons of different ideas, really worth your time. Rick has lived with diabetes for 57 years, there are more options with the current technology. He says. What his parents did for him back then, back in the day, was to instill in him that he had to take responsibility for his diabetes management, they did not hover over him. They taught him that it was just diabetes, and that he could live with it. Well, it was not something that would limit him. And he couldn't use it as an excuse for failing to reach his full potential in life. They taught Rick that he could do anything he wanted. As long as he put this condition under his control. That's excellent recommend you step back. She says Don't be afraid as a parent to use injections and finger pokes. Even with all the new technology, not to say that they aren't great. But having the ability and confidence to use any management strategy for diabetes is the best way forward. She says she tests often, she listens to people who have had diabetes longer than she has. She likes to see how they've adapted over the years. Go with your child to appointments so that everyone in the house can be on the same page. self advocacy and confidence can be built up instead of dashed, when things aren't going right. Even in spite of you doing your best. continue learning and adapting, breathe and have faith. I want to again echo this statement that you do not want to be the person who looks up one day and says oh gosh, is this not how anybody does that anymore? You want to keep learning. But using basic tools are still very important. I think Arden's Contour. Next One meter is one of the greatest tools we have. But she also has the Dexcom g sex, these things are not mutually exclusive. Thank you stuffy. Nicki says that she believes that there's a fine line between you can do anything. And this disease doesn't make you different. But you can also acknowledge that you are a little different. And you have different needs, and that it's hard. She says more on the emotional side for her. Nikki was diagnosed at four. And it didn't really hit her until she was like 23 or 24. What the emotional burden of the disease would be. I hope as you're listening that you see that different people experienced diabetes in different ways. And that all of these remembrances and advice from people isn't going to fit you. But some of it will, some of its going to fit you perfectly. I'm glad you're listening. And I want to keep going.

Carrie says allow your children to still be children. She says she was diagnosed at six years old, and that the diagnosis made her grow up much faster than her peers. She needed support, but also to take responsibility for her care. Completely restricting certain foods can be detrimental for many reasons. I completely agree carry. diabetics are not allergic to carbs, we just have to figure out how foods affect our blood sugars, and how to utilize insulin. Also, what works for someone might not work great for you. And that's okay. It doesn't mean one thing is right and one thing is wrong. You will figure out It feels like I just said this and then I'm reading and carry saying and I will feel silly for saying it myself. Anyway, if you will figure out what works best for you and your type one. And that all being said, What works one day might not work well the next. Allow yourself and your child some grace, you will figure out what works best for you. And remember, there's no such thing as perfection. Do not fear food or carbs. insulins not the enemy, neither of the carbs, do not compare dosages to others. certain amount of insulin isn't good or bad. Someone taking lessons and then your child or more insulin than your child means zero. Your child will need as much as they need. And that's the right amount. There are a lot of smart people listening to this podcast. I'm excited. Hey, Tara says that it may be hard now you know the sleepless nights you're having and you know being careless towards your own health, but that it's temporary. And these moments will be over before you know it. She's right by the way. Your support right now means everything. She says she can look back at her childhood and think wow, look how much my parents did for me. They sacrificed so much for me. I have a different bond with my mother than I think I ever would have if I didn't have diabetes. And it looks like Tara made Lisa cry, West cry. And Chelsea tell us that she has to say that her bond with her son has grown. He's five. And now we laugh a lot more. And I feel differently towards him. And I think it's the same for him. Cheese, you guys are all sweet. West jumps in to say thanks to the original poster. Yes, thank you very much for this question. And for the great responses. Sitting here on the beach, watching his little type one play as my wife and I try not to ugly cry reading these responses. So good and grateful for this community. I am to us. Tiffany says my mom was a type one. And I think a lot of her mismanagement stems from parenting. I could be wrong, she says, but I just don't want to cause any additional issues. So I try to pick my words carefully. Regarding food eating, I try to be forgiving, and have grace. Because most the time the numbers aren't in his control. She's speaking about her son now. Anyway, my son is eight and I don't want to cause any adverse to food or anything. And she's scared that she will. I am a I'm a big believer in that not restricting food for people with type one. Diabetes is important because of this very idea. I also want to say kind of harkening back to Susan's comment. Susan is eating low carb, but she's doing an amazing job of cooking for it. It's not a restriction. It's a exchange. I think there's a difference there. And it's important to feel that difference. You know, I'm kind of rewarding some of these with people's thoughts. Because, you know, people write differently than they speak. But I'm just gonna read Jacqueline's. My mom never restricted me from anything. And let me be a team. She gave me a lot of freedom. And then she says, I never abused my medical condition or pushed it to its limits. And I really thank her for that today. 13 years later, as an adult, she also never treated me like a baby at home or in public. I feel bad because I was diagnosed in high school. I'm sure I wasn't a peach, she says, between the hormones and the diagnosis and my new way of life. Ross's parents allowed her to independently manage her diabetes. From day one, she was diagnosed at 16 years old. And it's all I ever wanted, I took care of myself, and I never about 24 years strong. She says good job, Ross. Heather wants you to know that therapy and or support groups for the whole family are available. Don't force therapy, but encouraging normalize it by talking about it as a tool for well being in diabetes management. If you do this, find a therapist for your kid, when they are a preteen or earlier. Or a diagnosis if they've already if they're or diagnosis if they're already a teen. If you can't look for one specializes in diabetes, try really hard to get them one who has diabetes, she has the diff for any reason the child wants to switch therapist, you should support that.

Here's the last one. Melanie said that her parents just sort of ignored diabetes. It wasn't until she was 18 and moved out that she started taking care of herself and figuring out our health. It's been a long health journey, she says. But I say that to say the fact you care so much is a huge thing. There is no perfect way to manage type one diabetes. But as a parent, the fact that you care speaks volumes. What I wish my parents would have done is just reassure me that I could still live a normal life, and that food isn't the enemy. I just have to handle it differently. But I still can enjoy all the things that I love. She had major fear wrapped around food, because she was just left to figure it out for herself. She says just being a support is huge.

I genuinely want to thank and for posting her original question. I've been watching this thread grow over days. And I just thought this would be a great episode of the podcast. I hope you agree. The last post in the thread is from Anne and it says thank you all so much for responding to this thread. For all of your wonderful advice. I do want my daughter to have good numbers because it's my job as a mom to keep her healthy. But I think I've been overlooking the mental aspect. Because I don't have type one diabetes. I recognize that I won't truly know what it feels like to be her. So your words are invaluable to me. I hope she grows into a person who has a healthy relationship with food and a desire to take good care of her body. Seek out. Good advice. Just like you all you guys. Anybody else want to cry? I'm a little misty Hold on a second. God dammit. Oh, Jesus Christ. Facebook group is great. I love this podcast. I hope you enjoyed all this. I'm gonna rerun my words about the D one D exchange here in case you skipped over him at the beginning. While we're all in the mood to help each other. This is a way for you to help people you're never going to meet that may actually come back and help you. Geez, I really am crying. This is terrible.

Unknown Speaker 30:37
Guys.

Scott Benner 30:39
I really love all you guys. This is really like, I never expected this when I started this podcast. I'm so grateful. Okay, all right. Hey, don't forget if you're enjoying the show, please share it with others. If you like what you heard here today, you probably really will love the private Facebook group. There's a link in the show notes to that. If you need any of the links there at Juicebox Podcast com Please support the sponsors, the sponsors allow me to keep making the show. I have to be honest with you, it is a Wednesday afternoon. I am a grown person and that I can afford to read the internet to you is is because of the sponsors I'm not gonna lie. I definitely could not put this kind of effort or time into the show if it wasn't ad supported. So you know support the sponsors support the show.

Unknown Speaker 31:29
Speaking of which,

Scott Benner 31:35
before we get started, I'd like to remind you about the T one D exchange. You can be heard and support the Type One Diabetes community while you help drive research that really matters for people living with type one. The T one D exchange registry is a research study designed to harness the power of individuals with Type One Diabetes. This is a nonprofit research organization that is dedicated

to accelerating therapies improving care for people living with Type One Diabetes. they translate real world experiences into real world solutions that make your life easier. The registry is a research study designed to gather real world evidence firsthand, easily and quickly. The questionnaire that you'll fill out can be done on your mobile device from the comfort of your home. And since Type One Diabetes is a chronic condition that people live with their entire lives, participants can complete the questionnaire annually to help researchers understand surviving and living with type one. This is an amazing thing you can do it is 100% HIPAA compliant, absolutely anonymous. And when you join the registry besides doing all of those things I've just listed, you end up supporting the podcast. So if you've ever wanted to support this podcast without actually spending money, this is a great way to do it and feel good about what you've done. I joined the registry. As the parent of a child with type one by the way, you have to be a US residents either have type one diabetes or be the parent or guardian of a child. I don't think it took me seven minutes to finish. It was really simple to do. T one d exchange.org. forward slash juicebox. In just a few months over 400 listeners of this podcast have added their voice to the T one D registry. I believe that what the T one D exchange is doing is valuable and heartfelt. And I'm genuinely proud to be telling you about it. I hope you can add your voice to the others.

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Please support the sponsors

The Juicebox Podcast is a free show, but if you'd like to support the podcast directly, you can make a gift here. Recent donations were used to pay for podcast hosting fees. Thank you to all who have sent 5, 10 and 20 dollars!

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