Scott Benner 1/2/25 Scott Benner 1/2/25

#1397 Caregiver Burnout: Navigating Social Experiences Post-Diagnosis

Navigating social experiences post-diagnosis

Navigating Social Life Post-Diagnosis: Erica Forsyth discusses the emotional and logistical challenges caregivers face in social situations.

Practical Tools for Caregivers: Discover strategies to manage social interactions, from finding trusted care to handling well-meaning but tough questions.

Breaking Isolation: Explore how to balance caregiving with maintaining personal and social connections.

Shared Experiences: Real stories and advice from caregivers to help lighten the load and find a supportive path forward.

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

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

Scott Benner 0:00
Here we are back together again, friends for another episode of The Juicebox Podcast.

Erica Forsyth is back today for our fifth installment of the caregiver burnout series. If you've missed episodes, 123, and four of this series, go back and get them. If you're interested in learning more about Erica, you can find her at Erica forsyth.com if you're enjoying the podcast, please follow or subscribe on your favorite podcast app, and don't forget to share this with a friend who you think might also enjoy it. Nothing you hear on the Juicebox Podcast should be considered advice medical or otherwise, always consult a physician before making any changes to your health care plan. Don't forget to save 40% off of your entire order at cozy earth.com All you have to do is use the offer code Juicebox at checkout. That's Juicebox at checkout to save 40% at cozy earth.com if you or a loved one was just diagnosed with type one diabetes, and you're looking for some fresh perspective. The bold beginning series from the Juicebox Podcast is a terrific place to start. That series is with myself and Jenny Smith. Jenny is a CD CES, a registered dietitian and a type one for over 35 years, and in the bowl beginning series, Jenny and I are going to answer the questions that most people have after a type one diabetes diagnosis. Today's episode of The Juicebox Podcast is sponsored by the contour next gen blood glucose meter. This is the meter that my daughter has on her person right now it is incredibly accurate, and waiting for you at contour next.com/juice. Box. This episode of The Juicebox Podcast is sponsored by Medtronic diabetes, and later in this episode, we're going to be speaking with Heather, who will talk about the importance of education and understanding the impacts of hyperglycemia. Medtronic diabetes.com/hyper, Erica. Here we are for episode five of our caregiver burden series. What's today's topic? Right?

Erika Forsyth, MFT, LMFT 2:11
Today's topic is navigating social experiences. Post diagnosis

Scott Benner 2:18
is the part. This is your part. There's just so much to do for our infant, the management consumes our lives. There is no time to socialize, no time even for each other.

Erika Forsyth, MFT, LMFT 2:33
That's sad, yes. So obviously, you know, navigating social experiences post diagnosis is going to look and feel different depending on the age and stage of your child's diagnosis, but for the most part, you're in a season of shock and grieving and adjustment. So there is this natural struggle and concern of, okay, how do we navigate social gatherings, and that whether it's parties, whether it's office, talk, community events, whatever, when we're so we're talking about social gatherings, really, any kind of social interaction. The research says, you know that many parents struggle with attending these gatherings being social due to the disruptiveness and seriousness, seriousness of type one. A lot of the The research also said in the beginning it's really hard. You if you're at a party, for example, and you're trying to talk with friends, but then you're worried about, like you're you're looking at the CGM, or you're worried about, Is my child going low? We have to go treat the tension. Is kind of a two fold situation. Obviously, you're concerned for your child's health, but also you're kind of holding this like, what is, what is this other person going to think about? Or how are they going to think of me when I'm kind of half here, I'm kind of half listening, but I'm like, Aha, aha, and I'm looking at my phone or, you know, or like, or excuse me, and so you're that is another burden to carry. How to manage those interactions and the conversations? Yeah? Like

Scott Benner 4:04
when you're driving the car, the passenger doesn't judge you for not turning and looking at them while you're talking, right? They know you're focusing on another thing, and they can tell it's important. But around the diabetes, especially in a world where a lot of people hear from people like, Well, yeah, but you've got it under control. Now, she looks good, you know, like they don't understand what it is you're burdened with and thinking about, and then you get judged for not being present. Yes, right? Yes. So not only do you have to feel shame for not being present during a birthday party or a gathering or something like that, but you've got to sit there and wonder when you're going to get shamed in return for not acting the way you're supposed to act in that situation. The

Erika Forsyth, MFT, LMFT 4:47
car example is really good one, because in that there's the expectation and there's norms, right? But part of this burden of navigating these social interactions is the other meaning, the other. Person you're talking to doesn't know, doesn't have those, you know, those norms set in place, and we're going to kind of flush that out well, especially

Scott Benner 5:07
because when you start explaining it, you sound kooky. I've always found that through my life, like, whenever you start telling people about diabetes, they look at you like, Are you out of your mind? And then when you stop and think about it, later, you go, Oh, I do sound like I'm out of my own and by the way, I might be a little bit like, I'm panicked that this is gonna go wrong, or that they're gonna grab a cupcake and I'm not gonna know about it. Where he's gonna go, the kids are all gonna go run down the street, and she's gonna get low while she's like, Oh my god, yeah,

Erika Forsyth, MFT, LMFT 5:33
yes. And you're so you're setting us up really well for when we get to the tools conversation. How do we respond to those moments? And then let's say you kind of get past that point of, I don't, I don't know how to do these social interactions. And you get to the point of, well, maybe we want to, maybe we I want to go out with my partner, or maybe I want to go take a yoga class, or whatever it is, even if, when you have that longing to to have that social connection. You might also experience the challenge of either finding reliable care, whether it's family or or professional, finding it and then trusting that care, right? So that's like the second hurdle to get through, which we're going to talk about, also

Scott Benner 6:19
because it's gonna feel like nobody can do it, right? Yeah, mostly you're gonna be like, well, I'll look for and, you know, maybe you get lucky and find, like, a type one kid, and, you know what? I mean, you're like, Okay, well, you have it, so that's good. Or another parent, I've seen that before. I've seen parents, you know, buddy, this is gonna be in the Tools part, isn't it? I'm sorry it is. No, you're good. You're good. But I always get worried about hitting the wall and giving up, actually, in all of this, like, as you go through, like, you know, at what point do you just say, I don't want to stand there and be judged, I'm not going to go, or I don't want to I don't want to deal with the food. I'm not going to go. I'm never going to find a babysitter. We'll just stay here. And then, before you know it, you haven't left your house in five years. You know, yes,

Erika Forsyth, MFT, LMFT 7:01
that is exactly what happened. So all of this leads you to staying at home.

Scott Benner 7:06
Yeah, I've lived through this, Eric. I'm aware of how it's gonna go.

Erika Forsyth, MFT, LMFT 7:11
Oh gosh. And I know, you know, we giggle, but this is, this is so painful and challenging, right? That's why we're we're highlighting this. It changes

Scott Benner 7:20
the course of your life? Yes, it really does. There's a big difference between getting married and sitting around having sex and eating frozen pizza and not being able to leave the house because of all these things. You know what I mean? Like everyone goes through a moment a season in their life. Erica, to quote you, from another episode, where, like, hanging out kind of alone and at home, like you're building your you're building your family. Yeah. I don't know if people realize that happens or not, but you hunker down at some point, right? But then you go back out again. But this is one of those where you could hunker down for the wrong reasons and just become isolated.

Erika Forsyth, MFT, LMFT 7:53
Yes, yes. So because it, it becomes so painful to have to deal with those conversations or the questions like, oh, it looks like things are well, like, your it looks, how is your child adjusted? How have you adjusted? Like, look, you guys are, he's on the soccer team. Good for you. And people obviously don't know, because they don't know, yeah, how hard you're working to make it look so easy. Yeah, I'm thinking

Scott Benner 8:14
of shooting up a bank. Becky, thanks for asking. Yeah,

Erika Forsyth, MFT, LMFT 8:18
yes, right. Yes. Uh. So, okay, so what? What can we do? So these, these next, these tools, are going to kind of be a random mixture of, kind of filling your toolbox with actual tangible tools and some kind of cognitive tools. So again, we're leading with, you know, noticing the why, noticing the chatter that's going on in your mind. I know a lot of parents, when they start to go out, whether it's on a trip or to the beach, they might think must be nice when you when you're looking at other families, like, must be nice to go to the beach and not have 50, you know, fruit snacks and 20 juice boxes and a bag full of device changes, like, It must be nice, or it must be nice to go on a trip but not have to worry about going through the X ray, etc, etc, right? I

Scott Benner 9:04
haven't driven away from my house more than an hour without ice with me in quite some time. And you know what I mean? Just that little thing, like, I don't want to drive too far away, because we'll take we'll take insulin with us, and we keep our insulin refrigerator, so we'll throw on some ice, and the next thing you know, you have a little cooler, and you're like, I don't think about it anymore, to be perfectly honest. But for many years, as you're doing it, you're just, you just under your breath, you're like, and believe this is what I got to do, to go to the mall, you know what I mean? So I hear you. I'm sorry,

Erika Forsyth, MFT, LMFT 9:31
yeah, so that must be nice, so and so in the beginning that obviously, or in, you know, again, periods or seasons of change, that is either, you know, resentment or bitterness, but underneath that is the grief, right? Of like, I can't like this is, this is hard, this is sad. Why do I have to do this for my child? Why can't we just go off as a family without thinking about all these things? Why can't we go camping again? You know, whatever it is that your your family used to do, and you're noticing that. Must be nice, and so to honor that like it's hard offer yourself that that compassion that you are on that journey of acceptance, it's okay to have those thoughts, and it's normal, and being kind to yourself is so important in that space.

Scott Benner 10:12
This episode is sponsored by Medtronic diabetes. Learn more about hyperglycemia at Medtronic diabetes.com/hyper.

Speaker 1 10:22
Well, Hi, I'm Heather lackey. I am a wife and mom. I have two children that are seniors in high school, and I've had type one diabetes for 34 years. And I'm a dietitian and a diabetes educator. You know, I'm the Director of Global Medical Education. I lead a team of clinicians that are developing content.

Scott Benner 10:44
How do you feel when your blood sugar is high,

Speaker 1 10:47
irritable, thirsty, hungry.

Scott Benner 10:51
What do you enjoy most about your job?

Speaker 1 10:53
See education working. See people thriving. That's kind of the fuel that feeds, you know, my fire,

Scott Benner 11:01
what would you like to see community members talk about more

Speaker 1 11:05
hyperglycemia is the critical thing, right? That leads to short term and long term complications. Hyperglycemia is the greatest unmet need in the treatment of diabetes currently, and I think that that's where technology can help if

Scott Benner 11:20
you're having trouble with hyperglycemia and would like to talk to other people in the diabetes community. Check out the Medtronic champions hashtag, or go to Medtronic diabetes.com/hyper far too often we accept the blood glucose meter that someone hands to us, the doctor reaches into a drawer and goes, Here, take this one. That is that, is that the one you want? Is it accurate? You have no way of knowing. But if you want accuracy, and you want to be confident in the blood glucose readings that you're getting from your meter, you want the contour next gen. It's incredibly easy to get the same meter that Arden uses. Just go to contour next.com/juicebox that's all you have to do. The contour next gen is easy to use and highly accurate. It features a smart light that provides a simple understanding of your blood glucose levels, and, of course, Second Chance sampling technology that can help you to save money with fewer wasted strips. Contour next.com/juice box. And I do think you can get through it. Yes, yeah. I mean, genuinely, I I've had those thoughts, but I don't have them anymore. Like, I don't even think twice about it. I could just, I mean, I could probably do it with my eyes closed. Grab the insulin, grab the ice, to the thing that I have, a little cup I use, like, you know, like, I just, it takes 30 seconds now, and you don't think about even just, like, pump changes used to feel like that, you know what? I mean, like, you just like, oh, it's gonna happen. And then it happens, and I gotta get the thing and I gotta open it up. And you just, the whole time, you just just grind in your gears that you have to do it. And then one day you just, I mean, for me, I just didn't think about it ever again. I was like, Oh, I guess it's just what happens. It's like, brushing your teeth kind of feeling, you know,

Erika Forsyth, MFT, LMFT 13:01
sometimes, so that's, that's, that's a nice moment when it feels like brushing our teeth. But, yeah, some, I mean, even, you know, 34 years in, I still like, Ah, dang, I gotta change my pump today. No,

Scott Benner 13:11
no, I imagine you were, you actually were very helpful for me, because I mentioned how hard and Arden will take a pump down to, like, the last unit, you know what I mean? Like, it'll be 11 o'clock, and I'll be like, Arden, listen, if you just change your pump before you went to bed, you know, you'd be great, but if you go to bed with this pump, like, at 8am it's gonna need to be changed one way or the other. And so, you know whether you're gonna, like, sleep in or not. And I don't know, it's just the way you put it to me, like, and just sitting there looking at you, like, at your age, having had diabetes for so long, you're like, Oh, I ride those pumps right to the bitter end. And I was like, oh, okay, well, then that's a thing I won't talk to her about anymore, because that, to me, felt like a piece of this I can't understand anymore, didn't

Erika Forsyth, MFT, LMFT 13:59
I mean, yes, and I think that's, would it be wise to change it for the before the last 10 units? Because, you know, although, like, Oh, let me be clearly agree, yeah, I'm

Scott Benner 14:09
100% right, yeah, but, like, but I'm not, but I'm not factoring in the other part of it, which is, she lives with it. Actually, I used your experience as a proxy to fill in a gap in my thinking about Arden, and that helped me a lot. I don't know. I

Erika Forsyth, MFT, LMFT 14:25
never told you. Oh yes, well, I'm glad I normalized my procrastination behavior. I don't know, but there's something about like you don't want to. It's not even about wasting the insulin, although that might be a little bit. It's just about wait. Well, why do it now when there, I still have got time, and I can do it tomorrow morning. I don't know. It's a weird

Scott Benner 14:45
I have come to think of it cool thing as her trying to create as much time between touching diabetes as possible. That's kind of how I I've come to think of it when I'm I'm trying to, like, help

Erika Forsyth, MFT, LMFT 14:56
her. So, yes, yeah, that's good. That's good. So. We went off tangent. But that's okay. Hopefully that normalized. Yeah, some of that very well, yeah. I hope so. So in the in the kind of noticing this chatter around trying to face social interactions, if you're also feeling like, gosh, I can't, as you already said, Scott, you know, I can't, I can't trust anyone. And maybe that is the actual reality that you have, there's no family, there's no real, reliable source of caregiving other than yourself. And so I want to honor that. And is there something beneath that? Of you know, what if I'll never forgive myself? If something happens like they they go high for while I'm gone, or they go too low or and again, those are real fears. I'm not. I don't want to minimize those, but is shame preventing you from taking some opportunity to take care of yourself?

Scott Benner 15:51
Yeah, like, they there's like, a middle ground, you know, because, you know the there's i, we all have friends who are just like, whatever. It's fine. They go on vacation, they don't take their kids with them, and you're like, Oh, my God. Like, they're like, No, it's nice for us to get a lot, you know, we get away on our own. I'm like, Oh, I would never do that. But you guys seem fine. You know what I mean, like, so you have this, like, held belief about, like, no one's gonna, you know, in this example, no one's gonna be able to do this. They're gonna mess it up. I'm just not gonna go out. I'll stay here. And then you know, the family across the street with diabetes is, you know, I don't know, on a three day Benner and the kid's fine, I wish everybody could come to the middle a little bit. And I do think that happened, because every there are people who just have a freedom about them that are just, it's just, like, everything's going to be all right. And I'm like, Okay, I said to the Arden the other day, I think I have that, but my wife doesn't, so we blend ourselves to the middle, which is kind of nice, actually. Yes, the Arden was saying something the other day, and I texted her Three Little Birds, and she's like, what? And I was like, you don't know that song. And she's like, what? I'm like, every little thing is going to be all right. And she was like, she's like, whatever, so, but I think that. I think everything's going to be all right. I wouldn't drift a three day Benner, but I would drift a little far to that side. My wife pulls me back a little bit, and I anchor her from being too you know, oh God, let's never go out again, because this isn't going to be okay. Uh huh, I don't know, yeah, but what if? What if everybody's thinking one way or the other, and nobody's there to pull you back to the center, I guess. No, I'm sorry. I'm talking a lot. No, it's good.

Erika Forsyth, MFT, LMFT 17:23
It's Friday. It's good. Okay. So as we talk about going into social experiences, we talk about the burden of explanation. What you already referenced in the beginning, you know this, what do you do when people either they think they're, you know, asking compassionate questions, but they might land as more, you know, ignorant, or even though they're really trying not to be God

Scott Benner 17:45
only gave it to them because they knew you could handle it. Yeah, no one's ever said that to me, where the little voice in my head hasn't gone you just so you all know, and I know you meant well by it, and I never said it out loud, but it never feels good. Yes,

Erika Forsyth, MFT, LMFT 17:57
and those are people like, right? They're trying to offer encouragement, and they're trying to affirm your strength, but, gosh, it just land, doesn't land, right? So having something prepared, it feels maybe inauthentic, but in that moment when you're feeling extra fragile and vulnerable and you're you want, but you also need to be out in the world, or need to interact with your child's teacher or other parent in the classroom to have something practiced like, Thanks for checking in. It turns out type one is way more. Is way scarier. It's way more complicated than I ever knew. And then usually people might say, or you could even say, you know, if they're saying, like, how are you doing? Like, it's not looks like Teddy's doing great. And if you aren't quite ready to say anything, so you know what he's doing, okay, I'm not really ready to process or share. And then oftentimes people say, How can I help? And then we're going to get into some tools, right? Because then we feel stuck. What do we what do we want to say there?

Scott Benner 18:56
I'm glad you bring that up, because that sounds healthier than what I do. So I'm Madagascar penguin. The whole thing. I don't know if your kids are old enough to have watched the movie Madagascar probably no. There's three penguins, and they're constantly up to mischief. And when they get caught, the one that's in charge goes, just smile and wave. Boys, just smile and wave. And that's what I do. I do it to end those I do it to everybody. I'm like, oh, yeah, everything's great. Oh, we'll change that right now. Don't worry. When people how's it going? I go away in my head, yeah, I don't want to think about the last 20 years of diabetes when you ask me the question. So I go, she's doing great. Thanks for asking. And that's and generally speaking, by the way, that's true. But the nuance around it, I think the nuance isn't worth sharing in that moment. But I liked the way you were talking about it, like, hey, it turns out this is harder than I thought it was. Like, like, maybe be honest. Anyway, keep going. I thought that was wonderful. I don't like, no, yeah, and

Erika Forsyth, MFT, LMFT 19:49
that's good, because it matters who the audience is, right? We don't have to, I think this burden of feeling like, do I need to educate? Do I need to explain to them how. Hard it is, even though you're inside, you might be just like, barely hanging on. And then when someone says looks like you're doing okay, or he's back in class, or he's playing sports, way to go, and you're inside just feeling like, oh my gosh, this woman has no idea how hard this is. Yeah, you get to then make that choice, right? And you'd be like, Oh, everything's great. Or we're Yeah, we're doing okay. Or to say you can do a little it does it feel like you want to do a little bit of education, right? To say, Gosh, type one, it turns out, I had no idea what it was before he was diagnosed, but it's, it's way more complicated and way more serious than I ever knew. But I'm not really ready to like share everything quite yet. But thanks for asking. And as human beings, typically, they want to help, right? And so I often hear, when I'm like, role playing with caregivers in this, people then say, well, how can I help? And it's hard to say, well, you know, you can't drop off a casserole, right? Or maybe you could, I don't know, but that's that's complicated, you know? How

Scott Benner 20:57
can I help? Can I have your pancreas? I So

Erika Forsyth, MFT, LMFT 21:03
this like having these resources and mantras planned and prepared, just as we did, like I remember in the the team session at the conference that we just were at at the touch by type one, I asked them, What do you say when people ask you, what's on your arm? Because in the beginning, you might not be prepared. And they, a lot of them, had prepared things like, Oh, I'm part robot, or, Oh, it's my CGM. What's a CGM? Oh, ask, ask your parent. It's complicated. Yeah, you know all these prepared things to protect you, to not have to go as deep as you want to, right? In those moments, right?

Scott Benner 21:38
Arden was asked once if she had cancer because insulin makes Omnipod for insulin delivery. But they also make a medication. They make a pod that delivers medication that you get after chemotherapy that helps.

Erika Forsyth, MFT, LMFT 21:50
I've been, I have been asked that. I was asked, are you on, are you either post chemo or something, along with cancer? Yes, actually, I forgot about that, so you just brought that up.

Scott Benner 21:59
I can't forget because my mom called me one day and she goes, I'm wearing Arden's pump today. And she was like, like, I think she felt like a kinship. It was nice. I think she felt excited by it. Yeah, you're gonna get asked any number of crazy things, is that a nicotine patch? Is it this? Is it that, like, you know,

Erika Forsyth, MFT, LMFT 22:16
yes. Or with the pump I used to get, are you on call?

Scott Benner 22:20
Oh, really? Because it was like, on your waist, like a

Erika Forsyth, MFT, LMFT 22:22
pager. Yeah, look like, I mean, it still kind of looks like a pager, but I don't think. Don't forget anymore.

Scott Benner 22:26
You look young because I'm here and I'm old, but don't say stuff like that, because, yeah, I'm old. It's

Erika Forsyth, MFT, LMFT 22:33
okay. So okay. So what do you do when they say, How can I help you? May you've got, you've navigated that awkward either, you know, ignorant question, and you've shared what feels appropriate to you, given the audience, and then to have some things ready. And a lot of you guys probably know some of these resources already, but I think it's good to hold them here. I actually share this episode with a lot of my clients. The Best of Juicebox explaining type one, number 836, it's you and Jenny, kind of it's just a one hour explanation of what it is, and it's good for coaches, teachers, family. So I think you might have other specific

Scott Benner 23:08
episodes. It might actually be part of the Pro Tip series too. Oh, it's not a best of Juicebox. It might be pro tip. I think, what? Well, no, I think it. I mean, you've, you've caught me. I put it out. Yeah, I put it out as an episode. I think I'm, Wait, isn't that interesting? Let me take a look. I think it's part of the EXPLAIN type one, yeah, so you can find it as part of the Pro Tip series. At 1019 it ran as a best of episode at at 836, and I think it initially ran and that came from the community. Yeah, the community asked for, like, what do I I'm so tired. Actually, you're reminding me about this. I'm so tired of explaining this to people. I wish I had something to hand them. And Jenny and I were like, well, we could make something that you could hand them, and then that's what we did. So, oh, yeah.

Erika Forsyth, MFT, LMFT 23:53
And it's a great, easy, you know, you email it out to friends. I email it to clients a lot, to have them share it because it is. It is a real part of this transition, this burden of interacting with people, family, friends, a lot of you guys already have, whether it's five, oh, fours, A, T, 1d, you know, one sheet. There are great resources, you know, touch by type one has already, you know, a PDF letter to the teacher. They also have the type one at school. American Diabetes Association has great safe at school resources. So these are things you probably already know, but if not, there's a lot of things out there already created for you, for the coaches, teachers, family caregivers, another great resource from behavioral diabetes.org are these etiquette cards. I don't know if you've seen these before. Scott, you can print them out as a PDF, or you can buy them from their website, and they fold up to like, the size of a business card. Now, ironically, they have, they have two different types of cards. One. Is for, you know, people who don't have diabetes, and the other one is for for parents, like, what your teen would like you to know, okay, but it would be great, right? If there was one for caregivers to be able to hand out, but they highlight things that are are challenging, and to talk about with your with your teens, and then also with with family members. And so I just wanted to share that from behavioral diabetes.org I'm

Scott Benner 25:27
happy to steal that idea. What your teens would like to know would be good, good podcast episode, actually. Oh yeah, yeah. And I just looked while you were going over that, that episode in the last month, the explaining type one has been downloaded 1000 times in the last month. So people really must share it more than I didn't realize how much it was being downloaded, I mean, and I say that because it's been out for years and in the last 30 days, 1000 times is a lot.

Erika Forsyth, MFT, LMFT 25:50
Wow, yeah, that is a lot. Yes, no, that's a good idea. Yeah, we could just even go through those, those topics, because there's often, like, we have a lot of these feelings and tensions, but then when they're put to words, it feels just so, so validating and Yes, can I ask

Scott Benner 26:08
you a question to Can I ask you to suppose a little bit but for the people who are are burdened by these burdens, obviously, this is completely real. Do you think there's anyone that listens to just goes, Huh? This never happened to me. I don't feel this way at all. Like, do you think that's possible, like, just personality wise, or do you think they're lying to themselves to some degree? Or do you think there could be a mix of that? I think

Erika Forsyth, MFT, LMFT 26:30
there probably is a mix. So supposing a caregiver, their child's diagnosed, and they are able to go out into the world and interact and don't feel that burden of who, how do I explain? How do I manage my own emotions as I'm explaining what it is possibly, and maybe that's someone who's who's highly self aware, who's who's grieved, and feels like their grieving, their grief is contained. Maybe they've gone through a lot. Perhaps they're highly resilient, and they feel like, you know, we've gone through x, y and z, we can manage this. Maybe there's an over sharing, but like we've talked about before, like maybe you're grieving and emotions are coming out to anyone and everyone who will listen. Oh, we've

Scott Benner 27:10
all had a friend get broken up with and then it just all comes and you're like, oh, please stop sharing all this with me. It's too much. Yes, please stop. Listen. I said it because I think I was probably a mix, like I was handling it, but I also think there were impacts that I was pretending didn't exist as well. And now getting to make the podcast, I can look backwards and see them more easily.

Erika Forsyth, MFT, LMFT 27:33
Yes, like in the moment, perhaps it might feel like you're you're processing and interacting with the world in a really healthy way. And that might be true, and hopefully that is true, but maybe upon reflection, looking back and thinking, well, maybe I was holding everything in and pretending, doing the as you were saying, like, everything's great, thanks, and then you're going home and just into a puddle, just

Scott Benner 27:55
smile and wave, boys, just smile and wave. That's the line from the movie. Yes, I also find it's valuable to just assume I'm always making mistakes, and that way I just don't know what they are at the moment, because sometimes you are and sometimes you're not, but if you always think you're right, you're never going to be able to look back and and self adjust. And, you know, maybe I don't know, learn from it, move on. So I try my artist. You know,

Erika Forsyth, MFT, LMFT 28:21
that is the complication, or the the duality and pain of that burden of smiling and waving. Does that feel easier on the moment? But then do you end up feeling isolated and alone and feeling like people don't get it? Yeah, but then it also feels exhausting, right? I have to say, Gosh, this is really hard. Listen to how hard it is. It could feel

Scott Benner 28:43
easier in the moment, but I definitely think it does damage. Like, the only time you're gonna get away with that is when you get so old, like, I'm so looking forward to this part in my life, when you're just like, there's nothing left. I did. This is who I am. Let's just ride it out. Like, I can't wait to get to that one, but until then, you're growing hopefully so. But I am excited to get to that point where I could just be like, Listen, I want to let you all know this is as good as it's gonna get, and I'm gonna stop worrying about it now. But that day's not today, Erica, so gotta keep going a little longer. I guess. Did I cut you off before you got to the babysitter list? I apologize. Yeah.

Erika Forsyth, MFT, LMFT 29:17
So the last thing a lot of you guys might know this too, from type one together, there's a babysitter list that they've created that you can go look and type in your zip code and see if there are any type ones who have registered as babysitters in your area. So I think that's just a nice resource to have from them, from type one together. That definitely eases the burden of explaining what type one is, right? Because they have, they're living it. But then there still is, you know, the conversation around, how much do you want them to to treat, not treat? You know, all those things like, how personal you have to have, the personal type one management conversation, but not the, this is type one diabetes conversation, and

Scott Benner 29:57
that's Raquel, by the way, she's been on the show. Yes, yes. And she started

Erika Forsyth, MFT, LMFT 30:01
as a babysitter and then created this whole thing.

Scott Benner 30:05
And once drove me to an airport, which is a a piece of I don't think anybody knew that, but I gave a talk somewhere. When it was it was at the beginning of Uber, and I was like, I'm not getting in someone else's car. Like, that's not happening. And Brock was like, I'll take you. And I was like, okay, that I'll accept you. You look like somebody I can hold accountable. So nice. Yeah, anyway, yeah, she's lovely. Before

Erika Forsyth, MFT, LMFT 30:28
that was the beginning of Uber that's just that you just dated yourself. Now, listen,

Scott Benner 30:33
I'm very old. That's neither here nor that I'm getting, I'm getting by Erica and having dark hair, really, it's the only thing saving me at this point. But no, I mean, it was ride shares were new, and I was like, I'm not calling a stranger who couldn't get a job with a taxi company to come pick me up in their Corolla. I'm not doing it. And I was really adamant about it. Just in case you're wondering. I was like,

Erika Forsyth, MFT, LMFT 30:52
Do you do you take Ubers now, now, or lifts?

Scott Benner 30:56
I care less about my life now, so no, I mean, I do now, but it's a little more of a sanctioned, you know, yes, you know, it has been normalized. Yeah, in the end, I'm an adult. I would like to be in my own car, but if I can't be, then I will do this. Is that an old person thing? Like, I want to be in my own car? I

Erika Forsyth, MFT, LMFT 31:16
don't know if that's an old person thing. That might just be a human being thing, I don't know. Young people don't seem

Scott Benner 31:21
to care about anything Erica. They're just like, whatever. It's fine. We did good. We're good.

Erika Forsyth, MFT, LMFT 31:26
Yes, I think, I think we are good. And that also that it, you know, with the Navigating the social experiences and gatherings, it will, you will grow and evolve. And that those pain points that we discussed, you know, hopefully will lighten. Yeah,

Scott Benner 31:44
now i Listen, I I spoke with a person today. I record sometimes more than once a day, and she's in her 70s. She has type one diabetes, and she was making this point, and she just said, you know, it's not like when you break your arm and you just forget about it. And I thought, Oh, she's been alive so long that she broke her arm at some point and doesn't think about it anymore. Like, if you're eight, you're like, I broke my arm last summer, you know? And that idea that eventually just keep going and you don't remember, I'll tell my kids if they're arguing or something, and I'll say, listen to me. A year from now, you won't remember this. And that's an indicator of how maybe unimportant this moment is like again, not that in this moment you're not having a real disagreement or something's not happening, but you don't have to judge it as if it's going to be with you every day for the rest of your life, because sometimes you make that a self fulfilling prophecy. You

Erika Forsyth, MFT, LMFT 32:37
know, yes, to give it perspective is so important anyway.

Scott Benner 32:41
All right, I'm out of gum store wisdom for today, Erica, we have to go gum store candy. What is the what it Wait? What's the saying? Dime store wisdom, right? Who's gonna find it first? I mean, I'm using the internet. What are you doing? Is that the saying, dime store wisdom like a little kernel of truth you pick at in the unluckiest places, I don't know. Oh and then in Oh Brother, Where Art that was that this episode or no, that was this episode. Okay, hold on a second. Erica and I, we sometimes record more than one episode. In this sitting he's trying to tell his wife that he has value, but he uses a word, and now I can't think of what it is. Let's see. George Clooney tries to convince his estranged wife Penny of his worth. She has doubts, especially with his slick talk and past mistakes. So he defends himself by saying, I'm the damn patter families, basically declaring that he has value because he's the man of the family, even if he's flawed. And she replies with a dead pan that he's not bona fide. That's what I was thinking about. I don't know why, like, I I'm sorry. It's the end of the day anyway. See it in context, you'll love it. Uh Oh, brother. Where art thou? I don't know what year it was made, but you should be able to find it all right. Now we're gonna go, okay, okay, see you.

I'd like to thank the blood glucose meter that my daughter carries, the contour next gen blood glucose meter. Learn more and get started today at contour. Next.com/juicebox prolonged hyperglycemia can lead to serious health problems and long term complications. Learn more at Medtronic diabetes.com/hyper. This episode of the podcast was sponsored by Medtronic diabetes. Are you starting to see patterns, but you can't quite make sense of them. You're like, Oh, if I Bolus here, this happens, but I don't know what to do. Should I put in a little less, a little more? If you're starting to have those thoughts, if you're starting to think this isn't going the way the doctor said it would, I think I see something here, but I can't be sure. Once you're having those thoughts. Products you're ready for the diabetes Pro Tip series from the Juicebox Podcast. It begins at Episode 1000 you can also find it at Juicebox podcast.com up in the menu, and you can find a list in the private Facebook group. Just check right under the featured tab at the top, it'll show you lists of a ton of stuff, including the Pro Tip series, which runs from episode 1000 to 1025 I can't thank you enough for listening. Please make sure you're subscribed or following in your audio app. I'll be back tomorrow with another episode of The Juicebox Podcast. The episode you just heard was professionally edited by wrong way, recording, wrong way, recording.com and one more time. If you're enjoying the podcast, please make sure that you're subscribed or following in the audio app that you're listening in right now. If you're listening online, go find one of those free audio apps and subscribe. And if you're enjoying the show, please share it with someone else who you think might also enjoy it. You.

#1396 Camp Dumpster Fire

Kim's 13 year old daughter had a crappy diabetes camp experience - to say the least.

Camp Chaos: A 13-year-old’s diabetes mismanaged, leading to a crisis.

Protocol Failures: Alarming missteps in care and communication.

Parent’s Warning: Lessons on trust and oversight at diabetes camps.

Advocacy Needed: Ensuring safe and effective diabetes care.

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Hello friends. It's 2025 Welcome back to the Juicebox Podcast.

We're going to start out 2025 with a bit of a scary story. Kim has a 13 year old daughter who has type one diabetes. She went to diabetes camp, and it went very poorly in about 1000 different ways. I mean, this is a hell of a story. Whittier, please don't forget that nothing you hear on the Juicebox Podcast should be considered advice medical or otherwise, always consult a physician before making any changes to your health care plan or becoming bold with insulin. Don't forget to save 40% off of your entire order at cozy earth.com. All you have to do is use the offer code Juicebox at checkout. That's Juicebox at checkout to save 40% at cozy earth.com. I know that Facebook has a bad reputation, but please give the private Facebook group for the Juicebox Podcast, a healthy once over Juicebox Podcast type one diabetes. I really think it will help you. It will at least give you community. You'll be able to kind of lurk around, see what people are talking about, pick up some tips and tricks. Maybe you can ask a question or offer some help. Juicebox Podcast, type one diabetes on Facebook.

This episode of The Juicebox Podcast is sponsored by touched by type one. This is my favorite diabetes organization, and I'm just asking you to check them out at touch by type one.org on Facebook and Instagram. Today's episode of The Juicebox Podcast is sponsored by Omnipod and the Omnipod five learn more and get started today at omnipod.com/juice box. The episode you're listening to is sponsored by us Med, usmed.com/ med.com/juice, box, or call, 888-721-1514, you can get your diabetes testing supplies the same way we do from us. Med,

Kim 2:12
I'm Kim, and I'm a mom of a 13 year old type one diabetic.

Scott Benner 2:17
How long has your child had type one been

Kim 2:20
a little over a year. She was diagnosed in April of last year. Oh gosh, very, very, very

Scott Benner 2:26
recently. Any other type one in your extended family, in your immediate family, or anything like that? None. No. Okay, so diagnosis kind of came out of nowhere. You saw it coming. What was that process

Kim 2:40
like? It kind of came out of nowhere. She just started having, like, extreme thirst, and it was prolonged. And I kind of thought in the back of my head that this may have been a possibility. We took her to see the pediatrician, and then right away she checked her sugar, and was like, she's in a medical crisis. You need to go to the hospital, and then it kind of went from there with a diagnosis. So it's fairly quick, okay,

Scott Benner 3:05
why did you think excessive thirst meant diabetes? Did you Google it? Or how did you come to that conclusion?

Kim 3:12
No, I've worked in the medical field a majority of my adult life. She was just constantly going to the bathroom with that thirst. And it just vaguely crossed my mind. I kind of thought maybe she had, like a urinary tract infection at first, but that floated back there because I was, you know, familiar with the signs and symptoms of it.

Scott Benner 3:35
Okay, so she's diagnosed, and it's all pretty straightforward, right? You get some technology, you start learning about it. You progress along. Is that, you know, not a crazy story there just kind of went the way it goes. Yeah,

Kim 3:48
nothing really crazy. Thankfully, she's never been in DKA or anything. So I guess it's been as smooth of a transition as it could possibly be. Okay?

Scott Benner 4:00
So we're going to jump right into your the reason that you're on today, at what point in this process do you think, or does she say, or however it comes up, you'll tell me, I'd like to go to diabetes camp.

Kim 4:10
Well, we switched care from one major health organization to another, and when we went over to this new hospital, new endo this particular place, I think they're really involved in the diabetes camp. So upon our first visit there, the dietitian came in and she talked a little bit about diabetes and diet, and her biggest thing was, you know, kind of like rallying my daughter up about this camp and how great it would be. And then, anytime we went to an appointment there for endo care, you know, it always was brought up in conversation from whoever we were seeing there, like, Hey, are you going to camp? You know, you should really go to camp. You should think about it. So we looked into it. Thought it would be a good idea. Idea for her to connect with other kids and get that exposure. She really didn't know any other kids with diabetes. So that's kind of how we got started.

Scott Benner 5:11
Are you in hindsight telling me that it felt like a sales pitch, or just that a lot of people thought this would be a great thing for your daughter? I'm

Kim 5:19
not sure. I kind of wonder that myself, at the place we were prior, it honestly was never brought up about camp, or none of the medical professionals there talked about camp or asked about it. So you're

Scott Benner 5:36
saying every person that you saw from this, this new organization you were going to for medical care. Like they all said it.

Kim 5:42
Well, they all asked if she was going to go to camp. So it was pretty much brought up by everyone that we talked to there at some point. Okay, well,

Scott Benner 5:51
I'm going to do my best to be down the middle in this conversation, but that's interesting. She gets kind of ginned up about it. It would be a really good idea if you went, you'll meet people. And then you thought, well, she doesn't know anybody else with diabetes. Maybe this is a really good idea, right, right? How long was the camp for a week? I don't know how I want to be clear. I've never sent my kid to diabetes any camp, actually. But how long was the camp?

Kim 6:13
So this camp, you drop off on a Sunday and you pick up on a Friday.

Scott Benner 6:17
Okay? Sunday night, Monday night, Tuesday night, Wednesday night, Thursday night, five nights, gotcha. And what kind of technology at that con, at that time going to camp? What kind of technology was your daughter

Kim 6:27
using? She was on the Omnipod five, and Dexcom is what she went with.

Scott Benner 6:33
Okay, and how long had she been on Omnipod five before camp? Do you remember

Kim 6:38
she switched over to pump in October of last year. Okay,

Scott Benner 6:44
so after about seven months of diabetes, yeah, okay. So then October, November, December, when was camp? What month camp was at the end of June, okay, so she'd been using that stuff for a while, then right comfortable with it working the way you expected all that stuff was okay, yes, okay, all right, so when you drop her off, it was you, I imagine, or you and your husband, or whoever, whatever, and like you got you guys are dropping her off, and what's your level of comfort that day? Well,

Kim 7:16
I was nervous pulling up because she had never been there, and I didn't know what to expect. It was kind of awkward. I guess you're brought into a building with just a ton of people and kids checking in everywhere. And they have different stations that you go to before you I guess drop them off there officially. Just check in, they do some screenings. One of the stations, they take your phone. You're not supposed to bring your phone or anything, unless you're using it for your medical devices. Once you get to this table, they start switching passwords. They take your phone from you. They take your receivers from you, if that's what you're using. At one point, we were told we had to go downstairs and talk to their med techs. So I was kind of thinking like maybe nurses or something. So we get down there at the last step, and there are two teenagers that are going over the insulin settings and saying how we're going to leave our phones there and then to head to camp like half a mile across the property. So at that point, I was kind of leery, because we were leaving her phone there and her pump controller and then going across the property, and I had asked how long it would be before the devices got over there, and they didn't really give me an answer. So I thought that was kind of strange. I want

Scott Benner 8:48
to go back for a second. They changed passwords on what

Kim 8:51
on everything on the phones, and I believe she was using a CDM at that point. They don't let your kids have their controllers or their phones, and they change the password on them. I guess if they feel that your child may get access from these devices, from their counselor, that they're not able to get into them,

Scott Benner 9:14
how old are they at this we said she right. How old is she at this point? She's 1313, so they take her, so you come she's got her phone, which you're using for, what, anything diabetes related at that point or

Kim 9:26
no, yes, she was using it for her Dexcom, okay? And then

Scott Benner 9:30
that Dexcom shares, and then that's how you see her, yeah,

Kim 9:34
setting. So I forgot that part too. They also disconnect you from sharing. Like, if you're connected to anyone, they go through your Dexcom and they shut off the sharing. So I wasn't able to see anything other family members that we have on there. It was all turned off. Okay?

Scott Benner 9:52
So the share gets shut off on the phone, the password to the phone is changed, and then the PDM. You turn your PDM on, which they don't call it a PDM anymore. What is it's a diabetes. What does Omnipod call it now? A controller. Right? When you open up that controller, it asks you for a code to get into it, and that's changed as well, so she can't get into her Omnipod controller or her cell phone, and her phone isn't sharing Dexcom any longer. I have all that understood. You've probably heard me talk about us Med and how simple it is to reorder with us med using their email system. But did you know that if you don't see the email and you're set up for this, you have to set it up. They don't just randomly call you, but I'm set up to be called if I don't respond to the email, because I don't trust myself 100% so one time I didn't respond to the email, and the phone rings the house. It's like, ring. You know how it works. And I picked it up. I was like, hello, and it was just the recording was like, us, med doesn't actually sound like that, but you know what I'm saying. It said, Hey, you're I don't remember exactly what it says, but it's basically like, Hey, your order's ready. You want us to send it, push this button if you want us to send it, or if you'd like to wait, I think it lets you put it off, like a couple of weeks, or push this button for that, that's pretty much it. I push the button to send it and a few days later, box right at my door. That's it. Us. Med.com/juice, box, or call 888-721-1514, get your free benefits checked now and get started with us. Med, Dexcom, Omnipod, tandem, freestyle, they've got all your favorites, even that new eyelet pump. Check them out now at usmed.com/juice box, or by calling 888-721-1514, there are links in the show notes of your podcast player and links at Juicebox Podcast com, to us Med and all of the sponsors. My daughter is 20 years old. I can't even believe it. She was diagnosed with type one diabetes when she was two, and she put her first insulin pump on when she was four. That insulin pump was an Omnipod, and it's been an Omnipod every day since then. That's 16 straight years of wearing Omnipod. It's been a friend to us, and I believe it could be a friend to you. Omnipod.com/juicebox, whether you get the Omnipod dash or the automation that's available with the Omnipod five, you are going to enjoy tubeless insulin pumping. You're going to be able to jump into a shower or a pool or a bath tub without taking off your pump. That's right, you will not have to disconnect to bathe with an Omnipod. You also won't have to disconnect to play a sport or to do anything where a regular tube pump has to come off. Arden has been wearing an Omnipod for 16 years. She knows other people that wear different pumps, and she has never once asked the question, should I be trying a different pump? Never once, omnipod.com/juicebox, get a pump that you'll be happy with forever. Yes, okay, all right, and then you guys go for a joint across the property with no idea about when that stuff's going to be back to you. And now nobody can see her blood sugar. Is that right? That's right. Does she have a meter with her? She

Kim 13:03
did not. They asked that you don't bring any glucose meters, ketone strips. There's a couple other items they supplied it all. I'm not sure if those were on the counselors in the bunk house or not. Okay,

Scott Benner 13:20
all right. So there, it's possible that somebody could have checked her blood sugar if they needed to. Okay, so you go for this, you go to the other side of the property, and then what happens? We

Kim 13:28
just helped her unpack and say our goodbyes, and we take off from there

Scott Benner 13:33
at that moment, where are you at in your heart? Are you like, why don't we all get back in the car and leave? Or are you like, this is going to be great. I

Kim 13:43
was a little panicked because it started to set in, like I'm not going to be able to monitor that or really know what's going on, or speak to her if something's going on, but I just kept trying to reassure myself that this was like, the right thing to do for her, her her experience and being able to connect with the children there. Okay,

Scott Benner 14:05
so you're having what I would consider to be a reasonable response to the situation. You're not in a panic. You're just like, hey, this is weird. We usually know what her blood sugar is, you know, I'm worried about what happens if it falls or it's high for too long, and I'm not going to be able to see it. That's just where you're at. But this thing is set up to take care of this. I'm gonna believe it's gonna take care of this. Is that about, right? That's right. Okay, all right. Where she at? Do you know, or have you subsequently spoken to her about it, like, how did she feel in that moment? She was nervous. Did she say why?

Kim 14:37
She never, really, I've never heard a 13 year

Scott Benner 14:41
old expand on anything, but okay, that's how was about, right? How was school? It was fine, okay, okay, so she's nervous. You're nervous you leave. How far are you from the camp? Like, how far is your home? We're about two hours away from there, all right, so that's pretty far. So you're two hours away. Today, and now she's just, you're disconnected. So what you think is, I'm showing back up on Friday. That's the next time I want to see her, hear from her,

Kim 15:08
yeah, pretty much just hoping for the best. They continuously tell you about how everyone's, like, extensively trained and experienced, and they have all this wonderful medical staff there, and they kind of sell it to you, is being the parent, you get a break, and this is the only time you're not going to have to worry about managing your child's diabetes because they're under like, the best care possible.

Scott Benner 15:32
Okay, did you have to pay for this? By the way, there

Kim 15:35
is a fee, but it fluctuates for everyone. You can get grants. It can be income based, so it varies for everybody,

Scott Benner 15:44
okay, but you something came out of your pocket, or that, or if you couldn't get a grant, it would have, yeah, so

Kim 15:49
if you don't get a grant, or your income exceeds a certain level, then you pay, I think it's like $1,600 for them to stay there for those days, okay,

Scott Benner 15:58
so like $350 a day, like an expensive hotel, okay? But hey, what the heck? Because kids gonna have fun. They're gonna meet all kinds of people diabetes, and somebody's gonna be taking care of her all the time. Now, why are you on the podcast, then? Because I'm assuming you just picked her up on Friday, and she's like, this was terrific. Thank you. But that's not what happened. What happens in those five nights in between?

Kim 16:19
Oh, so she only made it to Tuesday, or actually, it would have on Wednesday morning when we got there. So I was sleeping, and that Tuesday, about 1030 at night, my phone rang, and I automatically went into a panic, because 1030 at night, right? So people only call when there's something wrong. And I just knew, you know, hey, something must be wrong with her. Answered the phone. It's a counselor from the camp, and he starts off by saying that my daughter had been crying for multiple days, or since she's been there. They tried a ton of different things to persuade her to stay at camp, but she was very adamant on making contact with me. The thing is, is they don't allow your children to contact you if they're asking. So there's no phone they can use. They can't go up to a counselor and say, Hey, can I use your phone I want to call mom. Or if they have an issue, they really discourage it. So there really is no contact there, unless something very extreme, I think, yeah,

Scott Benner 17:23
so in this phone call, you're being led to believe that your daughter has been distraught for three days.

Kim 17:28
Yes, and he's just trying to persuade me the whole time that he doesn't believe there's anything wrong with her. He mentions how she was sent to medical staff on a few occasions and they found nothing wrong with her. He stated that my daughter was making con comments to them about running her blood sugar too high and it was making her sick. And he would combat that with acknowledging that her sugar was ran over 300 for a while in anticipation of water activities that didn't end up taking place due to bad weather. He also said she believed she was doing what she was to try to be able to talk to me, to go home.

Scott Benner 18:10
So the place you're at that's telling you, don't worry. We know what we're doing. We all we do is all the time. Their plan for water activities was to let all the kids blood sugar go up to 300 and then let them go do the water activity. That was

Kim 18:23
the play. That's the impression that I got from what was said to me. Okay,

Scott Benner 18:27
but in her situation, specifically, they let her blood sugar rise, and then the thing that they thought was going to take care of the blood sugar, this water activity, which, by the way, a lot of kids go in the pool with 85 blood sugars, come out with 85 blood sugars. But that's okay. It just doesn't happen. It's not like, oh gosh, no, it's raining. We're not going to go to the lake or whatever. Everyone come on over here. We're going to Bolus and get your blood sugar down and take care of this. So she's feeling sick because of her elevated blood sugar,

Kim 18:55
right? And I also forgot to mention, in the beginning of this, they change the insulin settings when you check in. So this factors into this as well, like they don't run you at the settings that you have when you check in. Okay? And they say they do this because of the activity, so you're not getting as much insulin as you or your provider has set to treat your sugar. So

Scott Benner 19:24
sight unseen, you're saying without feeling out everybody's situation, I'm assuming there's a lot of kids there, but everybody just gets less insulin. Yes, Ah, okay, yeah. Now you're so new to diabetes at this point, are you thinking, this is what it is, or are you like, No, this is definitely a problem. Are you? Are you not really freaked out till you hear she's been crying for this? Because I have to be honest, I'm a parent. I heard my kid was crying for three days. I'd be like, there's where I'd be angry. So what happened to you?

Kim 19:56
So i i. I automatically knew something was up. I knew that something wasn't right. She's never acted like that. She's been away from home. I knew that if this is what was going on, that there was a problem here. He even said on the phone that he couldn't put her on the phone or let her talk to me, because it would open the door for other kids who wanted to make contact with their families, or something like that.

Scott Benner 20:28
We got a lot of descenders here. If they find out your kids on the phone, everybody's

Kim 20:35
okay. It was like a big deal, so I still couldn't talk to her at that point, but I just told him it would be, if this is how it's been, it would be in everybody's best interest for me to come and get her first thing in the morning. He asked if, if he should let her know that I was coming to get her. And I said, Yes, please inform her that I'll be there so she can have her things ready, right? Yeah,

Scott Benner 20:59
that. How'd you stop yourself from leaving then at 1030 so

Kim 21:03
I can't see to drive at night, okay? And it's two hours away. It was pitch black out. Scott,

Scott Benner 21:09
my terrible vision is what slowed me down. Okay, I

Kim 21:13
woke up so early and then sat around until, like right before it cracked daylight, and then I hit the road, like I got there earlier than probably they wake the kids up there. Yeah. Okay,

Scott Benner 21:26
so you collect her, and I want to know then, like, what's the the hindsight, tell you here, like the conversations, like, what is I guess, I want to know, like, when she gets in the car, what's the first thing she says to you?

Kim 21:38
Oh, I knew it was bad when I pulled up there and she came walking in, and her eyes were puffy. She didn't look well. She was frazzled. They didn't tell her I was coming. Apparently, they showed up to the camp in the morning, and when I arrived there, they sent someone over to retrieve her from the camp and rushed her along and said, Get your stuff together. Your mom's waiting for you, and she was crying. Yeah,

Scott Benner 22:04
they didn't want, they didn't want a whole evening of her being able to tell people I got my mom to come because they're thinking it's going to cause some sort of upheaval with the other kids, or some of the other kids at least. Yeah,

Kim 22:15
okay, possibly. So she didn't really say anything. I asked her what was wrong, and she didn't want to really speak in front of them. So they during the checkout process, they have to email you the EMR because they track like their sugars and how much insulin was given, all that. So we're standing there trying to get things switched over, and they said that upon checkout they would switch all the settings over, change the passwords back on the devices, and they couldn't figure that out. They didn't even know what the settings were prior when she showed up after they changed them. She's

Scott Benner 22:50
an Omnipod five too, right? Yeah, you know that most of the settings in Omnipod five, if you change them, you're not actually changing the automation settings. You're changing settings if you're in manual. Did they put her in manual? I'm not sure. Okay, yeah. I mean, geez, at this point, what do you know is even happening? Okay, so I'm sorry they can't. Were they able to get her phone open?

Kim 23:13
They struggled getting her phone open. They ended up figuring out the password these, I guess counselors they were they really didn't know how to manage these devices. And one made a comment how he uses some other pump or device, and he didn't know what to do. And I'm just sitting there thinking, Oh my gosh. Like, please tell me he's not handling any other child's controllers for anything. But anyways, they email this EMR over, and I pull it up, and I'm looking at it and going over her stuff, and then I'm like, okay, boom, right here you have it documented that she's been vomiting since she's been here. Her sugars have been probably around 330 she's complained multiple times about not feeling well. She's had ketones. They never told me that on the phone. When they called, they made it seem like she was doing whatever she could to come home because she didn't want to be there and she wanted to speak to me. They didn't tell me that she was sick. She really was sick.

Scott Benner 24:16
Yeah, I go over this again for me, and you started to say, but this is not commonplace for your kid to, like, throw a fit or anything like that.

Kim 24:25
No, no, she was relatively excited to be there. Her account was she was so sick because she wasn't used to having her sugar ran that high over the course of the time that she was there. She was physically ill, like I said, she was vomiting, she had stomach pain. She didn't partake in any of the activities because she said she was so out of whack with the changes to her insulin, and then not getting enough insulin with the food she was eating and not doing any activity. And she says that they. They ask you before each activity if you're going to do it, and they make dosing decisions based on if you're going to partake in that activity. Well, she didn't, and she told them that because she was so unwell that she didn't partake in anything while there

Scott Benner 25:12
I see, I see, and you feel like, I mean, did you ever get to speak with medical staff directly? I

Kim 25:19
didn't. It was very strange. There was nobody in this building that they brought me in there, just these two, like I said, counselors, I think they were,

Scott Benner 25:29
Yeah, but you're saying their teens, the counselors, these two

Kim 25:32
were adults. Okay, yeah, so it's just

Scott Benner 25:38
baffling. So you get control of her devices again. I'm assuming you work on her blood sugar get her feeling better. Like, how long does it take her to kind of snap back and be herself again?

Kim 25:48
After we got her home and her settings changed and pushed water and did all that stuff, it took her a couple days to feel better, but she was pretty out of it. Coming Home, I would say for a couple days afterwards, did they offer you your money back? Nothing was said about that. I really didn't care about any of it. I just wanted them to address

Scott Benner 26:11
Yeah, well, I was gonna say, I don't imagine you cared about that on that level, but I'm just saying, like, that seems like a first step in a situation like this, like, Hey, we're sorry. Take this, you rally and get everything together, and then you go back to them, I imagine, to complain or get answers or something like that. Yeah.

Kim 26:28
I also forgot, when she left this camp, she because you have to supply the Dexcom, the OmniPods, all that they didn't give us all of her medical supplies back. They were missing. Nobody could account for them. We only got a couple of the items back, and when I had questioned them, they just looked at me and shrugged, and ended up giving us, like, two dexcoms to replace the ones that were missing out of her

Scott Benner 26:51
stuff. Hey, here's somebody else's CGM so, yeah. So

Kim 26:55
I like, okay, we're supposed to send this, and you have no accountability of her medical items either. So that was another thing where I was like, Whoa. You know, we had paid out of pocket for CGM coming there, so she had enough during the duration of the camp, because they asked that you send extra and all that. So yeah, they ended up finding them and mailing them to the house about a week later. Lovely.

Scott Benner 27:18
Listen, I very badly don't want to name the place right, because it is, Listen, I don't just trust your experience, but I'm also, you know what I mean, like, I'm trying to, we talked about this prior to recording, and I'm happy to bring it up here. But in my time in this space, I've seen a few things that really light people up. And one of them is there is, generally speaking, a very strong feeling from people who have been to diabetes camp and have gotten something from it. They're very defensive of it if someone brings up stuff like this. And so I don't want, I don't want there to be like, you know, backlash. I want this to be like your story and, you know, let people listen to it, because what I take from your story is, I better know, not just hey, hey, don't worry about it. We got a med tech here. It's gonna be fine. Like, I want real answers to how things are gonna happen. And for me, if this was me, I would not be okay with not being able to contact somebody. Because look what happened. Like, it took her three days to, I'm gonna guess, brow beat, or just finally get to the core of someone's soul, so that they would call you otherwise, she's, I mean, you know, she's got ketone she's over 330 she's vomiting. I can make an argument. She's in DKA, right? And they're telling her she's fine when she goes to medical there's where I'm not okay with being disconnected because you're trusting people, but what if they're not doing what they say they're going to do? Then, you know, five days is a long time all of a sudden,

Kim 28:48
right? So the whole thing, I mean, I don't know, I'm so baffled at it, yeah, I ended up, after leaving, getting a hold of a couple of the directors of this camp, and kind of went over everything with them and let them know the situation. And was like, you know, hey, nobody told me that she was actually sick. She did come home sick, and they wrote back and basically just apologized and said that they investigated the situation on their end. Who knows what they did? And they flagged protocols that weren't followed properly by staff and volunteers that were given training. Said that they were going to address it directly with them to make sure it didn't happen again and do additional trainings for staff and volunteers. She also mentioned that when my daughter was checked out by medical staff, a phone call should have been made to me at the time, and I should have been made aware of the stomach pain, the vomiting, all that, and I wasn't. So that's concerning as well. Yeah,

Scott Benner 29:48
so their protocols are feel kind of meaningless because nobody's adhering to them, right, right? But don't worry, we're going to retrain everybody. We'll just take the training we did last time, and we'll tell them at the end of this. We'll give it to him again. At the end of it, we'll say, No, this is really serious. You gotta do it. How's that gonna change anything? You know what I mean, like, in meantime, how many other kids blood sugars are running around crazy or not feeling well and didn't get through to, you know, some counselor who finally found the heart to pick up the phone, right?

Kim 30:15
So funny side story that goes into this is I had joined a Facebook group when she was freshly diagnosed, about moms with type one diabetics, and when this had happened, I was so upset and kind of just like looking for that support there. So I kind of gave a little rundown of everything that happened. And, you know, it's 5050, there was a lot of people on there that said how they loved sending their kid to camp, and they had a great experience. And this and that they're at different camps, but I also managed to connect with another mom on there who actually had a child at the same camp, and she had mentioned that there was some kind of fluke and they didn't disconnect one of the devices From the follow up, and her child had been going super low. I can't remember an exact number at this point, but it was under 60, and she said it was prolonged. It didn't look like it was a compression low or any of that. And she was to the point of almost trying to call the phone number to ask, you know what they were doing, because this had rolled out for a while. She was watching it on there. One of the admins on that group had actually put a comment on there about how her daughter's been to these camps and has no other is has never had an issue, and then proceeded to ask me what I expect them to do about it, and did I do this? And did I do that? Super rude. She ended up banning me from the group for bringing it up, because it was almost like she didn't want me to share this experience because her child hadn't endured that. But there were other people on there who have had issues at camps as well that I connected with. So it makes me wonder how many cases are like this, and how severe they get. And where's the oversight of it? You know? Yeah, I mean,

Scott Benner 32:04
it's a private it's a private company in the end, right? It's, there's probably where an org, it's not an there's no oversight of it. I can imagine any number of scenarios all being true. There's probably camps that are awesome and there's probably people who go to awesome camps who have a bad experience. There's probably people who go to crappy camps, who have a good experience and everything in between, right? So you know, you can get lucky, and some kids don't get sick, or it works out, or they're already, used to be in 300 so they don't feel unwell or whatever. But I'm a hopeful person, but I'm distrusting in situations like this. Forget camp for a second. I didn't trust the school bus driver. When my kid got on, when they were in in kindergarten, I was like, What are we doing here? We don't know this guy, you know? I was like, Is he drunk? Is he not? Is he fantastic? Is he a great driver? He's a crappy driver? Like, I don't, like, I don't know who that is, and whether they end up being terrific or not, you're not gonna find out till it's often times too late. So I personally, I mean, my kids have never wanted to go to camp, but if you asked me if I was gonna send Arden to diabetes camp, I wouldn't have done it. But it's only for this reason, for the unknown, not to say that there aren't great diabetes camps, or there aren't fantastic people who work at them, I believe There absolutely are. But you know, this happened to you. It could obviously happen to somebody else, right? But the thing I don't get is, when something goes bad, like, like, stop it. Like, get it, get it fixed. Like, how does a kid with diabetes who has recently been told, let's take less insulin than usual, and let's have higher blood sugars than usual, who's vomiting and has ketones, how does that not get elevated? Like, how is whoever sees that should be like, All right, stop everything. This is our focus right now. And at the minimum, they're supposed to call you and they can't handle that. That's insane.

Kim 34:02
It's alarming, for sure. Yeah, it is mentioned that, yeah, like, you know, if this is not a one size fits all approach for all these kids, you know, you have over 100 diabetic children in your care, like, I don't know you can. How are they really doing it? Yeah, well,

Scott Benner 34:19
Kim, I also, I don't know you. I didn't know what you were gonna come on here and say, like, you could have come on here and said, like, look, my kids got a five, four, a 1c and they let her, you know, for the week she was there, her a 1c rose to five seven. And I'm very upset. I didn't know where you were gonna be on this. Like, I didn't know you were gonna tell me 330 blood sugars, vomiting, crying for days. Like, holy crap. And this might be boy, I don't know. Like, it doesn't make sense to me. It really doesn't. Gosh, what's your daughter's like? How does she look back on this like you, she knows you're coming to do this, and she said she encouraged you to do this. So what did she say when she encouraged you to share?

Kim 34:58
She really wanted a. For people to be aware of. You know, the potentials of what could really happen at these camps. She kind of looked into it herself, and you see all these happy stories and pictures, and it's so great. And I can honestly say, and she can tell you that herself, that it really put her in a mental and diabetic crisis, and she has no intent or interest to ever go back to any camp. I think her experience really closed the door tight on that one, and left her in a really bad situation. So, yeah, I I feel bad looking back on it. You know, I thought I was doing something good, and she did. I guess, the one positive thing out of it, she did make friends there, and she still has communication with them, and that's great. But when it comes to the point of borderline negligence of her health, you know, I can't imagine ever putting her in that situation again, regardless of what you want to paint to me, because that's not the situation, and not all kids are, you know, having this great time. So Right? Yeah,

Scott Benner 36:05
you haven't gone up door and said, So do you want to try a different diabetes camp? I've

Kim 36:10
asked her if she would go somewhere else. She says, Absolutely not. She says, Never again. I said, Well, what if you can have your phone there? And she said, she's good. So

Scott Benner 36:20
are these friends that she made, or are they just in a survivors group together?

Unknown Speaker 36:24
Yeah, right.

Scott Benner 36:26
My god, Oh, Jesus. Are you nervous telling me about this?

Kim 36:31
I'm not really nervous. It kind of honestly strikes some PTSD of dealing with the situation, because it makes me mad, yeah, but then it also reminds me that you can't trust your kids with anyone, and you can't believe everything that's sold to you. And I guess you can have good intentions, but that's not always what's given. And I think a ball was dropped here. And you know, I just hope for anyone else's sake that attends those in the future that this stuff doesn't ran like that. It's very scary. I wonder

Scott Benner 37:04
how you would even find out like, like knowing now with your experience, right, and knowing the place you know, you obviously know where they were. Have you tried looking online to see if you can find other people with similar stories? I haven't. No, it's just one. I

Kim 37:20
don't know that I would want to hear him at this point, probably people.

Scott Benner 37:24
I'm trying to figure out, like, how, how a person who's listening was like, Look, I'm thinking of sending my kid to camp, and here's what's gonna happen. I'm gonna get a lot of emails. You're like, please just tell me what camp that was. I just want you to all know. I don't know, and I'm not asking. Kim, so to me, it highlights you need to do more than your due diligence. You you really need to be certain before you do something like this. Really, you know, it's not, not like, Uh oh, this. They say they're going to or something like that. And at the very least, if all good, listen again, like you said, Good intentions. Well intended. Not like, I'm sure nobody thought, I'm assuming no one collected your kids on that Sunday and thought, well, let's get all these kids into DK, let them cry and vomit, and then we'll send them back on Friday. Like, I don't imagine that's what's happening, right? So, right? Like, I think you just have to let the kids have contact and then 100% Yeah, you know, if a couple of the kids are just like, malcontents or troublemakers or whatever, and then whatever it is they're afraid of. I don't even know what they're afraid of by letting the kids have communication, but whatever, like, I'm sure they're thinking about parents who are like my kids. Blood sugar is 130 Bolus like, you know what I mean, like, that kind of stuff. But their better intentions led to a lot of poor outcomes, and then they dropped the ball so many times along the way. You know, Jesus, yeah, I listen. It's hard to hear your story and think, no, I'd give it a shot.

Kim 38:45
I don't know I if I've heard this or knew of any situations like that before. You know, it would have been a absolute no for me. But you see, a lot of these camps, you know, sold everywhere. And I do feel because it happened to me, when you try to share, like, a different side of the camp in your personal experience with it, if it, if someone views it as negative, which it is, it gets shut down. Or, you know, in my case, like it

Scott Benner 39:12
gets very political, very quick, right? Like they don't want anything bad said about their team or their side, or the thing that they like, or whatever, yeah, or their

Kim 39:20
kids didn't experience that. So you know, you're full of it, and that didn't happen, but it's very real, and it is happening. And I don't believe for one minute that she's the only child that's been in a bad situation. And like I said, I just it's scary for kids that may have been in a worse situation than that. Kim,

Scott Benner 39:37
I think we're done. Unless you have something else to say. I don't want to belabor that. I don't want to belabor this, and I don't want to drag sad stories out of you. But, I mean, everything I expected to hear after I understood what, what your experience was I heard, which is your daughter's got long term like, I mean, you know, this is not something she's going to want to do again. You took this thing where she was supposed to go make friends. Friends and trust people, and now she's distrusting of other people and her diabetes. And you know, that's hard to shake, like this experience was detrimental to her, not additive, right? Yeah, for sure. Like she went backwards here, not not she didn't go forwards. Oh, absolutely, yeah. I have heard people talk about making life long friends at diabetes camp. I've heard them find management ideas that they never knew existed from other people. And they'll come home and say, I take better care of myself now because of diabetes camp and and I've I believe those people who have told those stories, you know, absolutely. I also believe the person who online said, my kid, you know, was at diabetes camp for multiple hours under 60, and nobody did anything about it. So, yeah, I believe all the stories, like in in general, forget diabetes camp. Like people are people, and some people do a better job than others, and some people will, you know, cut corners or whatever. This is not an uncommon like human story, but I don't know this seems very important to me not to be in that situation, especially a kid who's not powerful enough, you know, either in stature or respect or whatever you need to get your needs met in a situation

Unknown Speaker 41:16
like that. Absolutely. Yep. I'm

Scott Benner 41:19
sorry we're talking about this honestly, because I see the value in it, and when it's done right, I see how great it is.

Kim 41:27
I agree. And I like I said before, I think it's important to see both sides of you know what has happened and what can happen so and before I

Scott Benner 41:35
get a bunch of emails said my kid had a great time at diabetes camp, and I want to come on and tell you about it. We'll just do that. Now. Your kid had a great time at diabetes camp. Their health was perfect. They made a bunch of friends. They're lifelong friends. They learned how to Pre Bolus from somebody else, and they're doing much better because of it. I genuinely believe that could happen too, but when you're on a website, like Kim said, and there's pictures of everybody smiling and everything's great, and 15 people between the front door and the and the and your car tell you, don't worry. We know how to do this. We do this all the time. Like you know there has to be enough in your mind to go, what if not? Like, what do we do if this because that's really what you and your daughter lacked, was, if this doesn't go as intended, what do I do to help myself. You did not have any outs there at all.

Kim 42:24
No, we thought everything was covered. But looking back, it's like, you know, you start thinking like, oh, I should have did that, or should have, you know,

Scott Benner 42:34
stuck another phone in her bag or something.

Kim 42:37
Yeah, I think it would have been a totally different ball game. If she would have been able to have communication with me of some sort, it wouldn't have gone on as long. Yeah. So that's a whole nother issue.

Scott Benner 42:47
No, of course, no. I mean, listen, I understand the kids not being able to get the Instagram like you're trying to get them out, moving around and talking to other people like that, all like, I make sense to me completely, you know? Oh, yeah, yeah. But once you're in that she she was vomiting. She was over 330 vomiting and crying for days, Jesus. Oh, that sounds terrible. I'm so sorry for her. Please tell her I said, uh, I'm sorry that happened to her. I'll let her know. Yeah, I don't have a diabetes camp, but if I did, I definitely wouldn't let her go into DK, like, she's got, wow, I all right, like, Did you curse at people? I

Kim 43:23
can't say. I had the most pleasant attitude when I picked her up and noticed that documentation and everything else. I was just so disgusted. And I don't even know,

Scott Benner 43:35
Oh God, I would have been, I think I'd have been yelling before the car door was open, and just and worried for her. I guess not. I guess I would have been worried for her first, you know, but she's How have you been able to console her? Maybe this isn't happening, but like, you're the one that told her it was okay to go to diabetes camp. You know what I mean, like, did you take, like, a trust hit in this? Do you think

Kim 43:56
I'm not sure. I don't think so. Yeah, well, I don't think she views me as responsible for anything. You know, it's not like I sent her there to go into that situation. That's not at all what either of us have thought. So, right? Our relationship is pretty good, but like I said, her trust in any form of camp, whether it's diabetic or anything else, she just has no desire. Maybe that'll change over time. Who knows, but

Scott Benner 44:22
I hear what you're saying. Like, the sight of a Boy Scout makes her nervous. Now. She's like, Oh yeah, those people sleep outside too. I want to be fair. Did she have any good experience while she was there at all?

Kim 44:33
Oh yeah. She like, I said, She made friends and connected with other kids, and she said that part was good, but it was hard for her to really do anything. Okay,

Scott Benner 44:44
all right. Well, I can't wait to get the notes. I please. I I know there are good diabetes camps. This one wasn't one. I say to everybody, do your diligence. Try to speak to people who have used it in the past. Be wary of people who are you know. Seem connected. It seems like you, you alluded to that at the beginning a little bit. You know, if they're connected, somehow they might have a reason to tell you how great it is when it's not, or maybe they really think it is and it isn't. There's no way to know. But, yeah, I mean, listen, everything's like this, I misspeak on this podcast. You know what? I mean? Like, it's why you tell people like, look, this is, you know, this is not medical advice, and you should take care of yourself. And if you have questions, talk to your doctor. Because I don't know. I'm just relating my experiences, but I'm also not trapping you here. You can, you can leave whenever you want, you know, like, if you, if you hear something on the podcast, like, I don't know if that makes sense. You're allowed to call, uh, anyone you want to, and chat with them about but man, it seems like it almost feels like a It sounds crazy. Oh my god. It feels like a soul movie or something. You know what? I mean? It feels like a bad joke, like I have to tell you you are obviously from some lovely part of the middle of the country. If I showed up somewhere and they were like, Hey, we're gonna lock your kid out of your diet, her diabetes device, and she can't get into her phone. I'd be like, you and then we'd be leaving. What did you just say? That's insane. We won't be doing that. Thank you. I don't know you. Is what I would think. You know, I wouldn't let that happen if she was with my wife. I mean, you have to

Kim 46:25
have recourse. Kim, yeah, yeah, you do. It's wild looking back on it. But I was sold, you know, that, that she was under all this wonderful medical care, and, yeah, I learned a really hard lesson there.

Scott Benner 46:38
I'm sorry. I really am sorry for you. It seems, it seems like I don't want to like, I've been schooled by a person who has PTSD not to just throw the word PTSD around like, you know, because it is a real diagnosable thing, not just something that happens to you if you saw a movie you didn't like and there was no popcorn, you know what I mean, like, so I don't throw it around. But I would imagine that this is something that sticks with a person with you, and the way you're going to parent moving forward, and hopefully it'll help you make better decisions, but it's also probably going to make you distrustful, and that sucks, and I can't see how it's not going to make her distrustful in some ways, and I think that sucks too, and she and she lost the opportunity to actually have Those great experiences that she was expecting and hoping for. Anyway. I don't know what to say here at all. Just sounds terrible. I apologize to everybody listening. I look forward to your emails. All right, Kim, hold on a second.

This episode was sponsored by touched by type one. I want you to go find them on Facebook, Instagram and give them a follow, and then head to touched by type one.org where you're going to learn all about their programs and resources for people with type one diabetes. US med sponsored this episode of the juice box podcast. Check them out at us. Med.com/juice, box, or by calling 888-721-1514, get your free benefits check and get started today with us. Med, Omnipod five sponsored this episode of the juice box podcast. Learn more and get started today at omnipod.com/juice box. Links in the show notes links at Juicebox podcast.com if you or a loved one was just diagnosed with type one diabetes and you're looking for some fresh perspective. The bold beginning series from the Juicebox Podcast is a terrific place to start. That series is with myself and Jenny Smith. Jenny is a CD CES, a registered dietitian and a type one for over 35 years, and in the bowl beginnings series, Jenny and I are going to answer the questions that most people have after a type one diabetes diagnosis. The series begins at episode 698, in your podcast player, or you can go to Juicebox podcast.com and click on bold beginnings in the menu. I can't thank you enough for listening. Please make sure you're subscribed, you're following in your audio app. I'll be back tomorrow with another episode of The Juicebox Podcast. Hey, what's up, everybody? If you've noticed that the podcast sounds better and you're thinking like, how does that happen? What you're hearing is Rob at wrong way recording, doing his magic to these files. So if you want him to do his magic to you, wrong way recording.com, you got a podcast. You want somebody to edit it. You want rob you.

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Scott Benner 12/30/24 Scott Benner 12/30/24

#1394 What does Roxanne have?

Did she, Don't She?

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Friends, we're all back together for the next episode of The Juicebox Podcast. Welcome.

This is Roxanne, who was originally on episode 790 called Roxanne. That title said Roxanne has type one diabetes, psoriatic arthritis, cholesterol, BP, heart issues and more. Today's episode says this, Roxanne has had diabetes for 25 years, a returning guest from episode 790 she's here to talk about the radian study, and that she thinks she might not have type one diabetes, but has type two that led her to using GLP medications, and this has done so much for her. Levered out, her iron levels slightly decreased, her arthritis. She's lost 100 pounds. There's a lot going on here. Lung collapse, GLP does she doesn't. She have type one diabetes. So much happening in this episode of The Juicebox Podcast. If you or a loved one was just diagnosed with type one diabetes, and you're looking for some fresh perspective. The bowl beginning series from the Juicebox Podcast is a terrific place to start. That series is with myself and Jenny Smith. Jenny is a CD CES, a registered dietitian and a type one for over 35 years, and in the bowl beginning series, Jenny and I are going to answer the questions that most people have after a type one diabetes diagnosis. The series begins at episode 698, in your podcast player. Or you can go to Juicebox podcast.com and click on bold beginnings in the menu. This episode of The Juicebox Podcast is sponsored by us Med, us, med.com/juice, box, or call 888-721-1514, get your supplies the same way we do from us. Med, today's podcast is sponsored by the insulin pump that my daughter has been wearing since she was four years old. Omnipod. Omnipod.com/juice, box. You too can have the same insulin pump that my daughter has been wearing every day for 16 years.

Roxanne 2:07
On Roxanne, I've actually been on the podcast before.

Scott Benner 2:11
Yes, you have Roxanne. Your name is one that I actually recall, like it popped up in front of me, and I thought, I know this person. I've recorded with this person before. I was so proud of myself when I knew tell people what episode you were on. It was,

Roxanne 2:26
I want to say it was 790 okay, what

Scott Benner 2:28
was it called? Do you remember? I think it was just called Roxanne, and you have type one diabetes?

Roxanne 2:36
I thought that's what I had, but apparently now they're thinking I have type two instead?

Scott Benner 2:41
Really? Yes, oh, hold on a second. Roxanne has type one diabetes, psoriatic arthritis, cholesterol, BP, heart issues and more that. Boy can't, can't beat that as an opening and that was episode 790 but you're saying now they don't think it's type one. Yeah, go on.

Roxanne 3:05
Well, I was in, I did the radio study, and I don't have any markers for type one. Okay.

Scott Benner 3:11
I mean, is that? I don't really know, like, can you not have type one without any markers? Or that's what

Roxanne 3:18
I'm not sure. But talking to my endocrinologist, she says, I'm probably more type two, but because I was 18 when I was diagnosed,

Scott Benner 3:26
they may have they just didn't look any farther. I mean, that seems so backwards from what you normally hear, but yeah, fair enough. What do you think?

Roxanne 3:39
I figured it could be both. Both my parents had type two, or have my dad has it, my mom had it. So it's, I don't I've always had insulin resistance, issues with my PCOS and everything. So I'm like, I don't really care. It's treated the same way. So that's like, the label doesn't exactly matter to me.

Scott Benner 3:58
Okay, you did this study. Do you remember what they like? It's the rare and atypical diabetes study. Is that right? Or something like that? Yep.

Roxanne 4:07
Okay, yeah, they did lots of blood work and had me come down and do a glucose tolerance test.

Scott Benner 4:12
How old are you now?

Roxanne 4:14
I am 44

Scott Benner 4:17
so you've had diabetes, 2425 years, somewhere in there. Okay, what made you go get the study done?

Roxanne 4:24
I heard about it on the one of the podcast episodes, and I was just curious to see if I would qualify for something like that and just what it was about. So I looked into it interesting, and they had one here in town, so I didn't have to go too far.

Scott Benner 4:38
Wow. How long ago did this happen for you? That was fingers in, 2320 23 about a year or so ago. Okay, so nothing changed about your about your management.

Roxanne 4:49
The only difference was I had started the Manjaro by that

Scott Benner 4:54
point. Oh, how did that impact? Is that why you're back on Yes, yeah. Okay, well, huh? Geez, I didn't expect that. How did it make you feel when, when you got this news?

Roxanne 5:09
I was like, Okay. I was like, because I've always gone back and forth and said it could be one and a half because they were never sure what to call it. So like, Okay, I really don't care which one it is. It's like, going, we're still, I'm still using the same things to treat it as I was before.

Scott Benner 5:24
I mean, listen, obviously I'm not a doctor or anything, but I thought it was possible to have type one without the autoimmune markers.

Roxanne 5:32
I think so, but I don't know how they would know for sure one way or the other. That's what I was because I looked up stuff after I saw that I had no antibodies, and I'm like, Okay, well, is it possible, so I'm

Scott Benner 5:46
not really sure. Is there no one to go back to like at the study and say, can I get more information about this or like, because you're stuck then going to your Endo, who may or may not have experience, right? Yeah,

Roxanne 5:58
I was like, I may reach out to them again and see because I know they wanted to talk to my like my immediate family members, and do testing interesting on them, but none of them have really been. They were like, I want to do that.

Scott Benner 6:13
No, thank you. I got diabetes. I don't care which one it is, or I don't want to know I'm getting it or something. Is that basically the response you got back. Yeah, it's hard to not understand their perspective, that's for sure. Yeah, listen. Roxanne, I just want to jump in here, just so people know that, like, your microphone is going to sound a little different to them. Your can I tell them how you're set up? Yeah, that's fine. Okay, so you're wearing hearing aids that are directly connected to your phone, and that's how we've got this connection. So if, yeah, if we have like, a little crackle or something at the end, like, that's what's going on, no big deal. I mean, let's give them an overview for a second. Though, you lived a long time taking I mean, I'm assuming you've done shots. You probably won a pump all that. Oh yeah. And your management, in your mind, is basal insulin coming from a pump. You're bolusing for all your meals. It's not like you're using a I mean, what was your average total daily insulin before the Manjaro I

Roxanne 7:09
could use 200 units in like two days. Okay,

Scott Benner 7:13
so you're using a fair amount of insulin, but you said also PCOS, yes. Okay, obviously, probably since you were young, it's been on you. Oh, yeah, yeah, insulin needs always on that side.

Roxanne 7:28
At one time I was on you, 500 insulin. Oh, okay, geez. That was before the gastric sleeve gotcha,

Scott Benner 7:35
and then where there was weight loss that that helped with that.

Roxanne 7:40
Yeah, I was 214 at surgery, got down to 170 and that's where it kind of got stuck at. Was 170 which is why we looked into the Mon Garo. Okay, so

Scott Benner 7:51
you lost 44 pounds after when was the surgery? It was 2016 2016 you have the surgery. The 44 pounds comes off. And how about how long

Roxanne 7:59
I actually like it may have gotten down a little bit lower than that, but eventually it creeped back up to 170 I think I got down to 150 Oh, was my lowest weight.

Scott Benner 8:10
Okay, so then you live 2016 etc. When does someone come on and talk to you about a GLP, my daughter is 20 years old. I can't even believe it. She was diagnosed with type one diabetes when she was two, and she put her first insulin pump on when she was four. That insulin pump was an Omnipod, and it's been an Omnipod every day since then. That's 16 straight years of wearing Omnipod. It's been a friend to us, and I believe it could be a friend to you, omnipod.com/juicebox, whether you get the Omnipod dash or the automation that's available with the Omnipod five, you are going to enjoy tubeless insulin pumping. You're going to be able to jump into a shower or a pool or a bath tub without taking off your pump. That's right, you will not have to disconnect to bathe with an Omnipod. You also won't have to disconnect to play a sport or to do anything where a regular tube pump has to come off. Arden has been wearing an Omnipod for 16 years. She knows other people that wear different pumps, and she has never once asked the question, should I be trying a different pump? Never once omnipod.com/juicebox, get a pump that you'll be happy with forever. I don't know how you guys order your diabetes supplies, like CGM pumps and testing equipment, but at our house, we use us Med, and I'm gonna walk you through the entire process right now. I'm looking at the email from us Med, it says it's time to refill your prescription, dear Arden, please click the button below to place your next order. Then you click the button that was it. Two days later, I got this email, thank you for your order from us. Med, we wanted to let you know that your order and it gives you an order number was shipped via UPS grind. Confirmed you can track your package at any time using the link below. And then there was a link, and then it showed up at our house. Now I'm going to walk you through the entire chain of events. On the 29th which was the Saturday I clicked on the email. On that Monday, the first I got an email that said the order had been sent four days later on the fifth the package arrived. If you can do it easier than that, you go get it. But if you can't, us, med.com/juice, box, or call 888-721-1514, get started today with us. Med, get your diabetes supplies the same way we do

Roxanne 10:41
that was my actually, it was my surgeon from the when I followed up with him one year because I found I was going back to see him to get blood work. And every once a year, and he mentioned the ozempic. How long ago was this? That was 2022,

Scott Benner 11:00
all right, so a couple years ago, he says, Hey, have you heard about this GLP medication? Yeah. And you said, What'd you tell him?

Roxanne 11:08
I said I hadn't, but he told me to ask my endocrinologist about it. So

Scott Benner 11:12
I did. They gave it to you, no problem. Yeah. She was like, okay, we

Roxanne 11:17
can try that. All right, but she decided to do monjaro instead? Because it might, she said, it would have a better outcome.

Scott Benner 11:24
You might lose more weight on it. Is that what? She said, okay, yeah, so you start shooting that in 2022 where's your weight and what's your daily insulin like? Then when you be right before you started, and what is it now? Okay,

Roxanne 11:37
it was February of 2023. Is when I started it, because it took me a little while to decide to ask her,

Scott Benner 11:45
because I wasn't sure. Okay, I

Roxanne 11:46
wanted to go that route, but in February,

Scott Benner 11:48
hold on, Roxanne, let's stop there. What? What slowed you down? Where were you unsure?

Roxanne 11:53
I just wasn't sure about it yet. I was like, so I did some research, and then I was like, okay, because I think it was the end of 2022 when the

surgeon suggested it. So it took me a couple of months to kind of figure out

what I wanted to do with it.

Scott Benner 12:11
Wanted to go slow and make sure you understood what what you thought it was before you just jumped in. I say, okay, okay, so you go to the doctor. Doctor says, Cool, that day before you start total daily insulin and your weight.

Roxanne 12:24
I was 170 and then I was probably 60 to 70 units a day, okay?

Scott Benner 12:31
And you start with, I mean, what do they start you on? Point two, five of my point two,

Roxanne 12:37
five, okay, and then I moved up to the five, and I haven't gone farther than the five.

Scott Benner 12:42
Oh, okay, so you started at point two five. Did you do that for a month or longer? And it was a month, all right? And did you have any impacts in the first 30 days? It was a little bit of

Roxanne 12:54
nausea, but not much. It actually wasn't that. I didn't have that bad of a of side effects. So what

Scott Benner 13:00
about on your blood sugar or your insulin needs?

Roxanne 13:04
Oh, there was a definite decrease right away,

Scott Benner 13:07
okay, enough that you had to make adjustments to your settings. Uh huh. Okay. Did you lose any weight the first month?

Roxanne 13:15
How much? I do not remember. It's been a while. That's okay.

Scott Benner 13:19
And then you move up to the point five. Is there another decrease in your need for insulin? Yep,

Roxanne 13:26
it decreased again. And then it's just kind of been going and then the weight was slowly going down. By it was October of 23 I was down to 120 pounds. Holy

Scott Benner 13:40
Hannah. Wow, you lost 50 pounds. Yeah, geez, good for you. Congratulations. And then

Roxanne 13:47
I've been able to maintain that for the most part. This last year or so has been very crazy, health wise. How so summer of 23 in my ferritin was four, and so I ended up with an iron infusion, and that fixed that part. In March of 24 I got pneumonia, which then led to my lung collapsing. Oh, my God. And then two weeks later, it collapsed again. What

Scott Benner 14:16
the hell yeah? Like a bounce house that won't stay up,

Roxanne 14:19
yeah? So they ended up going in and having doing surgery to adhere the left lung to the wall of rib cage. Is

Scott Benner 14:27
that what they do to keep it from collapsing? Uh huh. Wow. And the weird thing

Roxanne 14:31
is, my mom had her lung collapse at the same age,

Scott Benner 14:35
huh? Well, way to keep up trends,

Roxanne 14:37
good job. Yeah. I'm like, we were thinking about we're like, Wait, mom is about this age. I was like, and hers was kind of spontaneous. So the pulmonologist is doing a genetic test to see if it's a genetic a rare genetic disease. So I won't have results for that for

Scott Benner 14:54
a while. Well, what kind of surgery is that? How invasive is it?

Roxanne 14:58
They put two whole. Holes in the side of my ribs and go in with cameras. What

Scott Benner 15:04
was the recovery like?

Roxanne 15:06
It's like I would have gone back to work in a week, in less than a week, but they

made me stay home, okay, or at least a week.

So I think it was a week and a half. But

Scott Benner 15:16
you felt better in a week? I felt better. Yeah, all right. Well, that's good news. Let's go back for a second to you losing like you're 120 pounds now,

Roxanne 15:25
I am actually at 115 because I was down to 105 when I left the hospital. Roxanne, how

Scott Benner 15:31
tall are you? 5253? Is this a good weight for you? I'd

Roxanne 15:36
like to be back up to 120 as of this morning, I was 115 so that's been good. So it's going back up.

Scott Benner 15:44
Are you having trouble eating? No, no, so you're eating okay, but you lost weight. Why do you think you lost weight?

Roxanne 15:50
I think it was just the stress of the all the medical issues at that point.

Scott Benner 15:56
Yeah, okay. Did your iron ever go back down? No, it stayed

Roxanne 16:01
back up. It stayed up pretty much. I follow up with a hematologist every

Scott Benner 16:06
six months. Had your iron ever been low prior in your life? Not that I know of. Okay, I'm doing some comparison shopping here. And of course, if you listen, you know that my iron had been low for like ever, and then it stopped getting low when I started taking zepbound Now, which is Montana, so it changes the absorption. Or for me, it, you know, I'm sure it doesn't do it for everybody, but I was clearly not absorbing something, and now I am from my food, so it's awesome. Do you feel like I your health issues, aside the pneumonia and etc, do you feel different? Like, what's it like to have lost that weight?

Roxanne 16:43
It's interesting because I don't, I can't seem to see myself as being that small anymore, as I still think of myself as being bigger. Oh, do

Scott Benner 16:53
you want to talk about that? Roxanne, I have that sometimes. Oh, my God. So one time I came out to my wife and I said, I walked out in the room, and I was like, I said, Does this ever happen to you? Sometimes I turn the corner when I go into the powder room and I'm like, you're met with a mirror before you get into the room, and it doesn't look like me. Yeah, that happens to you? Uh huh, yeah, all

Roxanne 17:15
the time. Because there's all these things I can see that I've never been able to see before, like, what all the different bones, like, the bones, like, I can see things and my veins are very, very noticeable now, yeah,

Scott Benner 17:29
I sleep on my side often. And I'll, kind of, if I sleep on my left side, I will sometimes, with my right arm, reach under and, like, kind of tuck my fingers under my chest, like on the right, on the left side. And every time I do it, I think, what is that? And I have the same thing in the shower when I wash my chest and I go down, I like, there's this moment where my, like, you feel something, and my my brain's like, what is that? And it's my rib. Yeah, it throws me every time I touch it like it's getting it's happening. I don't want to make it seem like I can't learn it's happening less and less but, but, you know, just wash your chest, roll down. God, what's that? Oh, that's my rib. And then keep going. It's the weirdest thing. Yeah, it's

Roxanne 18:15
very weird to I'm just like, Oh, I was like, that's what that looks like, I've never been able to see collar bones before. Yeah.

Scott Benner 18:23
Is that what this is? Gosh, at five two, you said,

Roxanne 18:27
like, somewhere between five two and five three,

Scott Benner 18:31
you went from 220 to now 115 Uh huh. My God, that feels like a miracle, doesn't it? Yeah. Do you ever have that feeling of like, oh, I should I wish I would have done this before the bariatric surgery.

Roxanne 18:44
I don't know I was like, because the bariatric surgery was so great to begin with, that helped kick things off and at least, but yeah, I kind of wonder. I was like, what would have happened had we tried something like that first? It's

Scott Benner 18:56
amazing. Has it had any impacts on other health issues,

Roxanne 19:02
I think so my TSH has gone down. It's like point six.

Scott Benner 19:08
Do you think that's the weight and, yeah, I

Roxanne 19:11
think that's just from the weight loss. Okay? Because they've had to adjust my Synthroid levels a little bit. Yeah,

Scott Benner 19:17
we've been watching that for Arden. Actually, she's going to get a blood test pretty soon for that, because she lost weight with GLP as well. She's almost in the same boat as you are, like, she got it back now. But there was a moment where she, we were, like, it's a little too much loss, and she was able to, you know, she put some back on, no problem. But what about the arthritis I'm I'm, like, so interested to know if it helped that

Roxanne 19:40
a little bit, I still just have a low level of pain. I think also some of it's just been cool, started back up with work and everything. So I've been doing more movement than I had been this summer because they made me take the entire summer off. They wouldn't let me work this summer

Scott Benner 19:58
because of the lungs. Uh huh, yeah,

Roxanne 20:01
which was a good thing,

Scott Benner 20:02
yeah. Can you tell people what kind of work you do? I

Roxanne 20:05
am a teacher of the visually impaired. Okay,

Scott Benner 20:07
well, well, well, Roxanne, we are into a thing here. Okay, like I wanted to. I'm trying to decide which way to go. Do you have anything you want to talk about before I start picking through this summer,

Roxanne 20:16
I actually went off of insulin completely. I had no injected insulin from just until last week. Last week I put my pump back on because the stress of work was making my excursions after meals go up higher than I wanted to. Wait,

Scott Benner 20:32
wait, wait. So you started taking Manjaro, you lost a bunch of weight, and then you intersected a moment where you're like, I don't need insulin.

Roxanne 20:41
Yeah, my endo wanted to try, at my appointment in June, my endo wanted to try not doing any insulin, any injection insulin, because I was only using like, 12 units of basal a day. So just basal or 12 units total a day, okay, so I wasn't using much. Most of my basal was turned off the I switched from op from Omnipod five to the Moby in March, and so looks like both opera movements worked about the same, but I like the control IQ a little bit better, okay, but it's most of the time, like at night. I don't get any basal with the pump program, because and my blood sugar stays about 86

Scott Benner 21:24
so you're wearing an algorithm. You're wearing the Moby this pump. It's deciding you don't need anything overnight, or you're telling it, I don't have a basal rate overnight. Or

Roxanne 21:35
it was deciding it. But then in June, my indo switched some settings around and made the basal at night zero. Most of the time it wasn't giving me anything, so she just went ahead and made it zero. Okay, and that's to do something at will,

Scott Benner 21:51
yeah, but in the beginning, you were still bolusing at meals, and now you're not doing that, until recently again, yeah, until last week. How long was that gap where you weren't publishing for the meals? It was

Roxanne 22:03
the 15th of

Scott Benner 22:05
June through last week to September. June, July, August, September. Like four months,

Roxanne 22:13
yeah, up to maybe two and a half. About

Scott Benner 22:16
two and a half months, okay, what did your doctor have to say about that?

Roxanne 22:19
I know that's a good question, because I haven't talked to her since I did it okay. I was like, and she gets the reports and everything. I go see her in November,

Scott Benner 22:28
and that's on a point five Manjaro once a week. Geez, yeah, you might disappear, and if you used any more of it, do you ever have the feeling like, point five is too much? Or you think it's pretty good?

Roxanne 22:44
I think it's good. But that was one thing we were going to talk about, was looking at maybe adjusting how often I shoot, I take it like to to like, lengthen the time, but between things or move the dose one or the two, is what some of the things he was going to look at when, when I come back,

Scott Benner 23:02
yeah, so you think you might elongate it, not take it every seven days. Yep, that's

Roxanne 23:08
what she was saying, to maybe take it every 10 or every other week. Here's

Scott Benner 23:13
the way I've been, because that's the thing that gets brought up. I mean, everyone's limited by the pen, you know, the dose, basically, right? So when doctors get to the point where they're like, Ah, it's probably too much for you, then they'll talk about, like, maybe we could stretch it out 10 days, something like that. But I've taken the medication and it wanes at the end, right? So it's not full power seven days. It's no, today's my sixth day, and I got up this morning and I thought, Oh, I'm hungry, but I wouldn't have thought that three days ago, like three days ago, I would have woken up and not been hungry. I would have eaten, but I wouldn't have been hungry. And not that I'm saying it's bad to be hungry. I'm just saying that like you can tell it's not working as much. And if I got it in my head today to have like, burger and fries or something, I could probably get it. I could eat it without a problem, but I couldn't do that on like the second day or the third day. And my point about that is, is that if the if the half life of the drug, if it's not actually covering all seven days like that, and you're having other implications from it, like meaning if, if you are being helped with your arthritis because of anti inflammatory reasons, or if it's making an impact on something else, right, like your PCOS, for example. Are you seeing any benefit from that?

Roxanne 24:30
A little bit? Yeah. I was like, the decrease in the insulin resistance has been helpful.

Scott Benner 24:37
Yeah? Then the question is, is, do you really want there to be a gap. And do you Yeah, right. And do you start talking? Yeah, right. So you had that thought when she said, maybe we can go longer, you were like, maybe we shouldn't, right? Yeah, because I

Roxanne 24:51
got the same thing. But it's like, I usually take it on Wednesdays, so by Tuesday I'm actually hungry on Tuesdays. Yeah? Or the rest of the time I'm not hungry.

Scott Benner 25:01
Do you see your insulin needs rise at the end of the week? Sometimes

Roxanne 25:04
I've noticed that has been the days where it goes up a little bit, goes up and stays up a little longer than I would like it to.

Scott Benner 25:13
Do you ever notice? Has it ever fallen? But this is a lot of paying attention. But have you ever gotten your peer I'm so sorry to ask about your period. Have you ever got, have you ever the dumb job I have? Have you ever gotten your period and been like at the back end and thought, Oh, my cramps are worse, or the bleeding is worse, or anything like that?

Roxanne 25:32
Not usually okay, because mine's rare. Mine's gone back to being sporadic again, so I'm not sure if it's perimenopause. Doing that piece again, because it was coming regularly for a while. Okay, until the summer, and then it started every two months again.

Scott Benner 25:50
How old are you?

Roxanne 25:51
44

Scott Benner 25:53
got this perimenopause. Word won't leave me alone. My wife's 50. Jesus. I hear it everywhere. I'm so hot, perimenopause, I'm sweaty. Perimenopause, I'm cold, perimenopause. I'm like, I Okay. I saw it like, I'm so sorry. Sounds horrible. Okay, so I haven't had anybody on yet to talk about this, and we're still just figuring it out for Arden. So I have no I don't know that I have any valuable input on this, but, you know, I've talked about this a little bit on the podcast, but it's probably not out yet. So funny how the time shift works. I heard somebody say something today, like somebody online said, I know this is this, right? And I was like, Oh God, I recorded that six months ago. That has nothing to do with that, but I see that you're drawing a connection to it, because it's like, it feels like I probably just said that three days ago, but I said it like months before it's anyway, it's interesting. Manjaro for Arden, you know, we're moving her up, moving her up, like, trying to get it to the right place. It's perfect on her blood sugar. Like, if, if her blood sugar was the only consideration. She was using five milligrams of Manjaro, and it was beautiful. And I just mean, blood sugar wise, blood sugar is perfect. Like, just couldn't get an excursion, like, you almost didn't have the Pre Bolus of, you know, blah, blah, blah. Like, there's no lows later, because you're barely using, you know, you're barely using any insulin, right? Just super smooth. But she's like, Yo, I can't eat. We're like, wait. She's like, I am just never hungry. She's like, I'm eating, but like, I'm never hungry. So we're like, Okay, well, we don't want that. Obviously, she was away at school, and she was losing, you know, she was losing weight, and, you know, you kind of don't see her the same way, like you're looking at it through face time or whatever. But then she started being like that, my pants don't fit. Like, you know, like, we're like, oh, okay, hold on a second. Like, she didn't have a scale with her, you know. Like, so we're like, All right, so like, Let's get you home. Got her home. Said this on the podcast already, she was about six, seven pounds under where she should have been. And, you know, we spent a little bit of the summer, just saying, like, all right, well, like, let's just, you know, eat on purpose. Like, that stuff, because I've, you know, used it for that, and it's what you have to do some days. You got to just tell yourself to eat, you know. But it just wasn't working. So I'm like, All right, well, we want to get your weight back up, so just stop taking it. This week, she stopped taking it, and she's like, my god, Roxanne, like, on day two, she's like, do you anybody want to go out to lunch? We were like, well, she was so hungry, you know, and she had her appetite, so she's super excited, and she's eating stuff, and she gained weight. And we're like, All right, well, now you're, we've got your weight back up, but your blood sugar's, you know, we've been managing it now with, again, a lot more insulin to make up for the fact that the GLP isn't there. And so let's get you back on this. But if we just hit her with the five again, like the two and a half wasn't enough, right? And the five was too much. So I had someone, a friend, tell me, look, I I'm micro dosing my GLP. And I was like, oh, that's like, how did, how did you work that out? And so it's pretty, a fair amount of, like, YouTube videos on all these different things that people are doing. But in the end, you can buy sterile vials and inject the pen into the vial and then use an insulin needle to take it out, oh, and then adjust your dose, right? So we didn't know where to begin. So, you know, we obviously talked to ardents Doctor and worked the whole thing out, and we just decided, like, we're gonna start with, like, a half of what's in the vial. So shot it in, drew out half, gave it to her, truth be told, she didn't have any, didn't change her eating, which was great, but I didn't see any real impact on her blood sugar. So then you're like, yeah, like, Okay, well, let's just move up. So the next week, she did a little more, did a little more. I think we're in like, the fourth week of it now, and. And we're only going up by bits. So to give context to it, though, there's no like, this is no dosing strategy for anybody. We just went to half, like, we basically injected it into the vial. Figured out there was about 30 insulin units worth of of the GLP in there. Gave her 15 of them. Didn't work next week. We were like, do 18? Like, we didn't know, you know, like, so like, 18 didn't really work. This week was 20. I'm seeing it impacting our blood sugars now. So next week we'll go to like, 22 and it's a slow process, but we don't want to jump too far, you know what I mean. And so, and we're and we're adjusting as we go, we'll try. 22 we'll try. We'll keep going. And who knows what the answer is gonna end up being like, maybe, I don't know, but I know other people heard putting little bits in every day, like, instead of giving themselves all of it in one shot, I don't and then I've heard people say, Oh, I tried that for a while and it didn't work. But my point is, is that everybody's out there trying to figure out how to dose this for themselves. When they're in this other situation, they're not just trying to lose weight or they, you know, it's not type two diabetes, but it's tight, it's type one. And they're trying to find this balance between is it help? Because it helps Arden with her PCOS, and it helps her with other stuff. And I noticed her not rubbing her wrists as much and stuff like that. Like, if you ask her about it, I don't know what she would say, but like, you know you're she's your kid. You've been looking at her for a long time. Like, you know, Arden's got creaky wrists, and she'll rub them. And sometimes, you know, you don't see her do it as much. Or you know her, you know, is this, you know, helping your periods. And she'll be like, I don't know, Dad. I'm like, okay. But then she came off it, and she's like, Oh, my cramps are terrible. I'm like, Uh huh. So, like, it is, I think it's helping her with a number of different things. It sounds like it, yeah. And it's all just, you're just trying to figure it out. And because the doctor's like, I don't know, try this, you know, because I don't know, I'm hoping that one day they do studies on all of it so they can dose like that. You know, directly from the doctor. I'm assuming one day they'll give you vials of it, and you'll draw it up and and use it that way, if you have type one, or maybe type two, or anybody who knows, like, I don't know, it's interesting. And it's still in its infancy, really, even though it's been around for so long. Anyway,

Roxanne 32:24
my sister has been taking a natural glps type supplement, what? And she's noticed some benefits from that.

Scott Benner 32:33
What are we talking about? You know, what's called,

Roxanne 32:35
I'm trying to remember what it was, but something one of my bariatric websites think they they were, they noticed would help.

Scott Benner 32:42
But what the neighborhood is, let me see if I can figure out what you might be talking about. So could it be bourbon? Could it be it could be bitter melon, like some formula

Roxanne 33:00
that has a bunch of that has something they fit, that has a bunch of different things that help stimulate the GLP, I think. But she's been taking that one because she's doesn't have any insurance and can't afford the so

Scott Benner 33:15
she's doing basically a supplement over the counter supplement that people online were like, hey, this could help increase your GLP, whatever production use, etc. Okay, yeah. Well, you know, it's funny, um, I put a post up not too long ago, and I just said any supplements you use doesn't matter how crunchy or weird or like, you know, common, like, could you list them here? Because I've been like, for years, I keep thinking, and people ask me all the time, like, could you have somebody on to talk about supplements? And I'm like, it's hard to know. Like, who really knows what they're talking about, right? Like, so, like, you don't want to bring somebody on who's like, you know, cinnamon, you know, or, you know, true enough. When I Googled what you asked me, bourbon, bitter melon, fenugreek, cinnamon, probiotics, uh, turmeric. Like, best virtual like, these are things that popped up that are just like, Look, these are things that might potentially increase. GLP, one secretion for people. Like, I don't know if it does or not, but what I finally kind of came to was, if I'm waiting for someone to come down from high and say, Listen to me, if you take, you know, I don't know fentanyu, Greek, which I don't even know what that is like, you know what I'm saying? Like, this is going to do that. I don't think that's ever going to happen. So why not let people just say their story, like, I use this thing. I feel like it helps me. I'm not selling it. I'm not telling you to buy it, but it's from my experience, it's worth a shot. Like, I'm gonna do, like, a short series of that for people like, like, look, I don't know if this is gonna help. I don't know if it's a scam. I have no idea. But here's what this person said about it. You know, if your sister found something that was that she feels like is helping her, like, God bless. You know what? I mean? Yeah.

Roxanne 34:59
Yeah, like, I was talking to my my nutritionist, bariatric coach, and she was telling me about that one because I'm because she knows I've been doing the bondaro, and she's like, this is one that I found that'll do it naturally for some people that can't afford it. So I told my sister to

Scott Benner 35:15
try it. Yeah, it's where, I mean, listen, is your sister lost 50 pounds? It's

Roxanne 35:19
like, she hasn't lost much weight yet, but she's only but she says she's noticed differences with her cycle and everything good for her, you see,

Scott Benner 35:27
isn't that that's awesome, like it helped her with something. Yeah, exactly, yeah. Who even cares if it didn't help her with the thing that like? Or if, by the way, if she took it for a month and she's like, you know, this, do a damn thing for me, then she can stop taking it. People at least deserve to hear what other people are talking about. And I don't mean like, in the like, stupid, like, you know, cinnamon takes your diabetes away. Like, not dumb like that. But over and over again, we did that myth series right where, because people, that's a real common thing around diabetes, like that, the joke about cinnamon, but, you know, Cinnamon has been shown to help lower blood sugar levels, but not in type ones. Like, it's not, it's not a replacement for insulin. Like, and those things get confused. So if somebody's taken a couple of cinnamon tablets and they've got, you know, and they see some benefit from it, like, good for them. Like, you know what I mean, like, and it's just, it feels like people want to argue all the time about everything. I mean, that just seems obvious, right? I would think that the first time somebody said, Hey, you know, I took cinnamon and I noticed, I think I have a little more insulin sensitivity. And then some other person comes running in and is like, don't say that. You're gonna kill people. They'll stop taking their insulin, like, and you're like, Oh, my God, well, that was that overreaction to what I just said. And then, you know, years later, there's, there's this side of the argument, that side of the argument. People are online, you know, yelling and screaming about whatever I would say. I don't know if any of these things do anything, but here's what people are saying about it. And here's a real person who listens to this podcast and was like, you know, I take bourbon and I think it helps me. I think it's a net positive to share all that stuff and let people go find out what can or can't help them. Makes

Roxanne 37:05
sense to me, because there's all kinds of things that I see all the time for PCOS and stuff, different combinations of supplements and things to try. And I'm like, Okay. I was like, I'll try it. Yeah. Like, if it doesn't do anything, it doesn't do anything, but it's, it's natural stuff that's not gonna hurt. It's

Scott Benner 37:24
worth a roll. Like, and, yeah, I take your point. Like, you know, maybe someone's trying to make money off you. That would suck if that was happening, right? But, yeah, if you're in a bad enough spot, like, you take a try something and see I, you know, it's funny. Like, as an example, I hear from people, you know, I've athletic greens, or, I guess they want to be called ag, ag one sponsors the podcast, they buy a couple ads a month. I drink it right, like, so I wanted to try a green drink. And I tried a few of them. I couldn't stomach them. I got the Ag one. I was like, Oh, this tastes good, like, and I took it, and I thought, I think this is, like, beneficial for me. I noticed that it is and I feel better. I'm gonna keep drinking it, keep drinking it. And I don't know how much longer after that. But then one day, I get an email and ag ones like, you, you know, we'd like to buy ads. And I was like, Oh, I actually, I actually drink ag one. I was like, awesome. And then you, you know, ads go up and you hear it's snake oil. It's this, it's that, it's a rip off. It's too expensive. If there's it's not right, like, and then there it's somebody else will be like, I drink it, and it really helps me. And, like, in the end, I'm like, Listen, if it helps you, it's great. And if it doesn't do anything for you, then it's not for you. I can't spend my whole life arguing about whether or not a green drink. It's a great way to get your vitamins and minerals and whatever else. Like, it's just this person takes it and says, hey, it's valuable for me. This person doesn't think so. Like, okay, you don't use it and then you do it, like, whatever. It just, it's so weird how it falls apart. Yeah,

Roxanne 38:59
I've seen some of those. And that's the hard part about trying to post things that are helpful, is like, because there's always going to be somebody that's going to come against it the other way, yeah.

Scott Benner 39:08
Roxanne, I went to your Facebook page. You look like a different person. Isn't that something? Wow, yeah. Let's read. And

Roxanne 39:19
I updated things a little bit. Yeah, that was the other thing My nutritionist told me. She goes, You need to update your photo, your photo. So I did some, and it's the one on the profile pages from right after I had surgery, so that, like, the middle of, middle, end of May. Yeah,

Scott Benner 39:36
listen, I have the same experience. People are gonna think that this story is like, old, but it's it happened again. Like, Arden sent me a photo of myself the other day, and she goes, holy crap. Like, look at this. And she's like, you like, fundamentally, don't appear to be the same person. Yeah, it really is. It's crazy. If you would have found me back then and said, How do you look? I would. Not have thought, like, oh, I seem unhealthy. Like, you know what I mean? Like, I just never would have thought. I'm sure there are people would hear that and go, you're an idiot. It was obvious or whatever. But like, I don't know, like, I was used to seeing myself that way, the aches and pains and the other stuff. Like, I thought that was me getting older, you know. I mean, you look back now and you're like, Yeah, it's pretty obvious. Like, you know, my knee hurt because I was heavy, you know what I mean, but it just as you're living, it just kind of doesn't occur to you. I don't know another way to put that exactly. It's been awesome. Like, I just looked at your picture now and before, and I thought that's the same vibe from my picture, like, now and before. Yeah,

Roxanne 40:38
I was like, I found one from like, 2014 from before surgery. And I'm like, I don't even recognize myself in that picture. Yeah. I'm like, Dude, my face was

Scott Benner 40:47
fat when I get dressed in the morning. I'm still, still knocked over that I'm wearing a large T shirt every day, like, you know, you find the tag and you know, you turn your T shirt the right way. And I look at it, I think that's crazy, that this is a large T shirt, and then I put it on, and it doesn't grab me like it makes no sense to me at all. My head got smaller. I wear a different size baseball hat now. Yeah, I've

Roxanne 41:15
got three sizes of pants right now, just because I don't want to go buy too many more pants because, like, I can fit into a size six, but then I have some 10s and twelves that still fit around the waist still, so I'll wear those one sub touch. But it's like this. And then I have some aids. So I was like, I'm like, Okay, what parent? What size is this one? Let me see how well they fit today. And I'm slowly getting rid of the ones that get too big when they fall off on themselves, fall off by themselves. I'm like, Yep, good for you. Too big.

Scott Benner 41:44
I give mine away to, like, to a charitable thing, as I lost, I haven't lost much weight recently. Like, I'm pretty stuck at this spot, and it's my fault I'm not exercising enough. I know that that's the next step to this. And I'm just, yeah, just not getting it, having said that, like, my wife, like, will look at her sometimes she's walking through the house, and I'm like, Are you, are you trying out to be a circus clown? Like, what is happening right now? And she's like, what? And I'm like, your pants. She goes, Oh, I know they're falling down. And I was like, yeah. I'm like, why don't you switch? And she's like, I will. I will. She does it very she does it slower than I did. Like, I left the size, and I was like, I took the clothes, and I was like, I am never gonna need you again. But she's a little more careful about getting rid of her clothes. But she's just, it's ridiculous, like you could, I genuinely think I could put, like, a medium sized child in her pants with her sometimes I'm like, Kelly, get rid of those. It's so life changing. Seems like just like a but not like, just the stupid thing to say, but it really is

Roxanne 42:45
like, I still go into the stores and have to remind myself I don't need to go towards the bigger side stuff anymore, and I can actually, we went on a cruise this summer, and I actually bought dresses for the first time. Oh, that's awesome. Different ones. This leaves listing. I'm like, Oh, this is kind of cool. Yeah, I was never, I was always too big, but I didn't feel comfortable wearing a dress, so I got all kinds of cool new dress clothes.

Scott Benner 43:10
And, yeah, it's awesome. I one of my great moments was like, it's like, I don't know, like, two summers ago or and I was at my my mother and father in law's house, and they have like, a pool, and we were sitting around, and I don't get by a pool very often, and they have like, you know, these like, kind of tall bar chairs, but they're kind of like, you know, springy, and they lay back a little bit. And I was like, sitting in the chair, and I brought my feet up and put them, like, on the bottom of the seat, and I was kind of sitting there with my knees up hit me out of nowhere. I was like, I've, I've never done this in my entire life. Like my thighs would have been pushing my stomach. I wouldn't have been able to breathe if I sat like that, you know. And I was like, Oh my God, that's so crazy. And it seems like probably the dumbest thing to people, but like riding in a car and you don't get sore, or, you know, on a long trip, or, like, this does the littlest things, Oh, yeah. It's so much less about how you look and much more about how you're feeling and how you're interacting with the world around you. I think those are where I notice it more. Yeah. And

Roxanne 44:16
I'll run into people that I know, like, I ran into somebody I hadn't seen a while at work, and she's like, I almost didn't recognize you.

Scott Benner 44:25
Has anybody asked you if you're sick because you've lost weight? I have had that, yeah, yeah. I've had that a couple of times. One of them was with a friend, and so after the awkwardness is over, he just looked at me and said, like, I thought you had cancer. He's like, I was so worried when I saw you. And I'm like, Oh God no. I'm like, Thank you, though, I appreciate you being concerned. But he's like, that's how different you look. My primary care

Roxanne 44:47
says I should gain a little bit more weight. She goes, now you're at the bottom of the healthy range. I was like, Okay, well, I was like, I'm working on that. That's like, the Manjaro keeps the blood sugar where it is. I. Stopped losing, and now I'm able to gain and get gain back up, go back up, because I think 120 is where

Scott Benner 45:04
I want to be. Yeah, there's probably some exercise, like some weight resistance exercise, that would help you gain a little weight as well. Oh,

Roxanne 45:11
yeah, that's yeah. I have got to get into doing the strength training to get my muscle tone back. And maybe that'll help with some of the saggy skin. Yeah. Oh,

Scott Benner 45:23
I think it definitely would I have, like, my muscle tone is good. I'm not like, pumped up or anything like that, but I'm not like, jelly or anything either. Like, I know, because a lot of people be like, oh, you know the GLP, you're going to lose muscle. And, like, I think that's people can look into it for themselves, but you're going to lose muscle when you lose weight, no matter what you know. So I do dumbbells and some things to, like, you know, just, I'm not trying to, like, grow or anything like that. I'm just to kind of stay in line with it. And I think I'm doing a good job. Like, I feel, I don't feel weak, and, you know, my muscles are firm, like that kind of an idea. I'm obviously not a body building aficionado or anything like that. But, yeah, I mean, it's, I think it's important to to lift weights at, you know, do, like, lift heavy things when you're losing weight, no matter how you're doing it, but probably, specifically when you're using a GLP, it's probably even more important. I would think, yeah, yeah, oh my gosh. What do you experience with people around you? Have you gotten the you've lost too much weight, are you using that stuff? Like, do you have any of those conversations? Most

Roxanne 46:26
of the time, they just want to know. They just ask. A lot of times they ask me if I'm sick, and they're like, No, I'm fine. Other than, like, healthy stuff, like, it's not, it's like it was on purpose, right? Like I was purposely wanting to get back, get down to where I felt better, because even with the higher weight, I was still having insulin resistance. Yeah, that was the main reason for trying it. The weight loss was just a side effect. Yeah, was a nice side effect.

Scott Benner 46:55
Exactly. It's like a gift inside of a gift. I hear that from a lot of people too, like my body being smaller is great, but I was trying to avoid, and they'll say, you know, I mean, for me, I didn't want to have a heart attack. That's what I was most afraid of. You know, I'm adopted. I don't know anybody I'm related to, so I have no idea if the people I'm related to drop dead all the time from one thing or the next. I have, you know this, this tiny bit of information about my birth mother, which, you know she she died younger during bariatric surgery, like during the surgery, and the way it was told to me. So sorry to like, say it seems like such a bummer, but, I mean, I'm 53 now, I'm fairly past this, but apparently she was kind of forced by her parents to give me up for adoption, and that put her into a bit of a depression for a lot of her adult life. She became like morbidly obese, and then one day, kind of tried to help herself, and then had the surgery. But during the surgery, she had a she went to cardiac arrest during the surgery, she died during the surgery. It's terrible, but I don't know if that's a story specific to her experience, or if the people I'm related to have heart attacks in their 40s, you know what I mean. So yeah, so I'm like, it was Arden left for college, and I had this like moment where I was like, both the kids went to school, like I should try to help myself a little more, you know what I mean. And then that's how all this started. Now, like a year and a half ago, I'm actually going back to speak at something this weekend that I spoke at last I speak at it every year, but so I went last year in September, and by then I had probably lost April, May, June, July, August. This is like six months. I probably lost like 20. I don't know, I'd have to go listen to my diary to figure it out, but 2025, pounds, something like that. You know what I mean, a little more. But today I'm almost 50 pounds lighter. Oh, yeah. And I'm wondering what people will think like if there's going to be another reaction, or if the reaction is just over. You know what I mean?

Roxanne 49:01
Yeah, that's always an interesting thing is, like, is it more noticeable? But, yeah, I wanted to go to that event,

Scott Benner 49:09
but it's a little far from me. I'm sorry. Yeah, I don't want you to travel. We are trying to, actually, I'll be having some conversations this weekend about doing a traveling thing where, maybe, maybe we put up a post a couple months ago now to try to see where, like, Where are their concentrations of people listening? Oh, yeah, I remember that one, right? Who might want to come out. So the people who might be helping me with that, I'm going to get to speak with this weekend, so we'll see what, uh, yeah, see what happens.

Roxanne 49:41
Are you when you came to Austin? Oh,

Scott Benner 49:44
I enjoyed Austin. That was really fun. Yeah, the event was great. Like, the seated like, what we ended up doing in the room, I thought was a lot of, yeah, a lot of fun, and people seem to really enjoy it. But the town was nice. I The one thing I felt I tried to get. Out and do something one night, I just couldn't get in. I was like, oh my god, the lines here are crazy. Got some food, and I went back to

Roxanne 50:06
my room. But like, we try to stay out of downtown Austin. When we go to Austin, I don't know

Scott Benner 50:12
the area, they put me in a hotel. And I was like, Okay. And I'm like, where do I have to because the the talk was at the Capitol, yeah, it was in the Capitol building, yeah. So, like, I was just like, you know, you get there, and you're like, alright, I'll do this tomorrow. Like, you got to figure out, Where am I walking to? Like, where can I get something to eat? And then, like, that night I went out. I was like, God, there's so much going on here. And I just ended up walking around and just kind of experiencing the place, which is, it was really cool. I didn't end up doing anything really, just kind of walking around and taking it in. Yeah, but I'd like to do more stuff like that. It's nice to meet people and say hi and, you know, put faces to like names online and stuff like that. Where are you at, like, with your I want to go back to this so you stop your basal only. You're shutting your basal off at night and and then for a couple of months not even shooting for meals, but then now you're back to shooting for meals again, like, what's your total daily insulin right now?

Roxanne 51:07
That is a good question. I am not sure, can you look and I'm not sure if I can get to it, because it's on the app on my phone. Oh,

Scott Benner 51:16
well, go ahead. If it cuts you off, I'll we'll do it. It's fine. Try it all right, let me see if I can find it, because I'm dying to know, because it's i, if I'm recalling right, you're like, 60 or 70 units. And now then, all of a sudden, you weren't using as much. And for at

Roxanne 51:30
least two months, I had no I didn't even have the pump on. I took the pump off. You

Scott Benner 51:35
weren't even shooting a basal insulin. No, okay,

Roxanne 51:38
yeah, for two months, you wanted to just see what happens if we didn't give any injected insulin, to see what my body would do

Scott Benner 51:45
using a basal overnight now, or is it still zero overnight?

Roxanne 51:49
Nope, it's still, let's see. Let me look at what yesterday was, because

Scott Benner 51:53
we can kind of do the gazentas here and try to figure it

Roxanne 51:56
out. So the rest of the time is point one an hour. Point one way.

Scott Benner 52:01
Yeah, okay, point one. So is it possible you're only getting like, a unit or so of basal a day?

Roxanne 52:07
Possibly because a lot of these on the screen, like starting at, like, what I can see from yesterday, what or from yesterday was like from 12pm it was point one for a little bit, then it went down to zero, then it went back up to point one,

Scott Benner 52:26
and then it auto gave me some

Roxanne 52:29
some stuff, and then I gave myself insulin when I ate. But

Scott Benner 52:34
what are those rough numbers? Like, rough numbers like auto Bolus, and your Bolus about how much is that? Just count it out loud.

Roxanne 52:40
Okay, so it was point five two for the auto Bolus, right? 2.65 was my Bolus. The Auto Bolus again for point three, then point four, five, and then there was nothing else Bolus was until I hit this morning, and I put two in at six for my breakfast, but

Scott Benner 53:01
yesterday was about 3.92 like four units of Bolus, plus what we think might be one or one and a half units of basal. Yeah. So even if we give you credit for like one and a half units of basal, you used about five and a half units insulin

yesterday, yeah, from like 12pm

Yes, versus 60 or 70 before the Manjaro, yeah. Oh, so do you have type one or type two or a lot of, yeah? Yeah, man C peptide is like 60

Roxanne 53:35
or something like that. She said the last time, okay,

Scott Benner 53:38
and you're probably getting a little more. I mean, it sounds like you're getting a lot of bang for your buck out of those beta cells, yeah? Like, whatever's

Roxanne 53:46
in there still, whichever ones are in there, they're working better now. Because, I mean, at one point I was on the u5 100 and still using tons of insulin,

Scott Benner 53:53
yeah, diagnosed at 19 years old. A lot of autoimmune stuff in your, in your in your life, right? You have, boy, yours are the questions like that. I really am super interested in the answers to, like, are you type two? Are you somehow in a 25 year lot of situation, or, you know what I mean? Like,

Roxanne 54:13
yeah, it's, I know. I was like, I'm curious about this stuff. I was like, but there's no nobody wants to look. Nobody knows. I'm like, Okay. I was like, at that point,

Scott Benner 54:22
there's no money in figuring it out. They still sold you a pump in insulin, right? So, yeah, yeah, yeah, boy, that's interesting. Like, you heard the episode with the guy, the 50 year old guy, uh huh, yeah, I did you know 50 years old gets diagnosed. They tell him he has type one six years he's using insulin. They put him on manjarna, lose or zbound, or whatever, to lose weight. He loses a bunch of weight. They completely take him off of insulin for like, two years. He has excursions at his meals, but they're not like, you know, they go up and they come back down again and like, you know, I think he fully expects he'll need insulin at some point. But. Yeah, what a weird story, and not a story you would have heard without these, these injected GLP medications for the wait list.

Roxanne 55:07
Fascinating listen and just, just watching my blood sugar go up and come back down without any insulin was very intro, other than what my body was making, it's finally able to used Roxanne

Scott Benner 55:19
when it was happening for those two months. What an excursion look like, like? What did it go up to? How long did it stay up there? It

Roxanne 55:25
go up to, like, 190 and it stayed for like, an hour or two, and it come back down, depending on what I

Scott Benner 55:33
have, okay, so higher than you would expect if you didn't have diabetes. But not yes, okay, but it comes back down.

Roxanne 55:40
I got to the point where I'm like, I don't like it going up to 200 and stay there, sure. So I decided to put it back on, and which is what she told me I could do if I decided I didn't like it, or just it started going up too high, yeah, put your bum back on.

Scott Benner 55:55
I love you. Just trying things, you know. Yeah. And you haven't stopped taking Manjaro. Since you started taking it, you've been taking it consistently. I've

Roxanne 56:04
been taking it consistently. I was taking Jardiance with it for a while. I'd been taking Jardiance for a while, but she decided in June to stop that. One just didn't need it. Yeah, yeah. She said, with what we were doing, just so that's so while I wasn't injecting, having insulin or anything I was just doing the mondaro Jardiance is a pill, right? Yeah, it's a pill. It was helping with, like the insulin resistance and stuff too, but she thinks it was contributing a little bit to some of the blood pressure issues I was having. Oh, okay, so we decided just to stop it and your

Scott Benner 56:38
blood pressure got better. No, so low. I

Roxanne 56:43
don't know. It's like, I went from having really high blood pressure and on blood pressure medication to them stopping the blood pressure medication and giving me something to make my blood pressure go up. And that didn't really work. So it's still, everybody's like, is your blood pressure always this low when they take it? I'm like, yeah, it's been that way for a while now.

Scott Benner 57:02
Was the journey. It's a daily pill. Yes. Was okay. Did you notice it helped with your insulin resistance before the Manjaro a little bit, little bit. Okay. They're working on a lot of stuff now. But wait, wait, do you see over the next couple of years these, oh yeah, yeah, the pills. They're trying to work out for the GLP and just all kinds of other stuff that's coming down the, you know, they're gonna send up to the FDA and see if they can get, get a yes for so I'm interested to see where it all goes. I don't mind giving myself the shot, like it's fine, but, you know, I gotta be honest, if there was, like, basically a, you know, a pill to take that I knew would keep, you know, my weight where it is, and all the good stuff that comes along with it. And just, I gotta be honest with you, weight aside, just absorbing the iron is such a big change to my life, you have no idea. And it just an increase in my happiness, yeah, you know, just my iron not being low. I know people probably don't think of it that way, but it was a major impediment to, like, just living your life. So, oh yeah, yeah,

Roxanne 58:10
that's like, I'd rather take it if I can take a shot that allows me to have better control of things, and I'm not having to do shots all the time. I'm okay with that? Yeah,

Scott Benner 58:21
right on, right. Okay, all right. Roxanne, is there anything we haven't talked about that we should have? I don't think so. I appreciate you coming back on. Did I ask for people to come back on? Or did you reach out to me? How did this happen?

Roxanne 58:32
Um, I heard on one year would go on one of your weight loss journey, that you were looking for people that were on glps to come on and talk. And so I reached back. I reached out, and was because I'd like to come back on and talk about my journey with the weight loss stuff, because it's been a big difference.

Scott Benner 58:50
Yeah, I'm happy for you. I'm glad you were willing to talk about it. I appreciate it. I get feedback from all the episodes, basically, and overall, like, real positive from those are some people I think don't like the way I talk about my weight. And, you know, I don't know, I tried my hardest, but I think that format was interesting because what you don't like, I guess what you might not get from like, listening, is that, like, sometimes I sit down, it's like, first thing in the morning, I'm like, Alright, I'm gonna take my shot now. And I, you know, you turn the microphone on, I need to take the shot. And you just, you know, it's not like, I'm thinking about it before I sit down. I'm not like, I'm basically in real time going, like, Well, what happened to me this week? You know, like, not a lot, really. Or I couldn't eat here, I eat here, or whatever. Or sometimes, like, just, you get emotional out of nowhere, like, you're like, Oh, I can't, you know, I can't believe this. How have you taken it, like, as a person who've gone through this, has it been, what's it been like to listen to it?

Roxanne 59:41
It's just nice to know some of the stuff that I'm feeling is or things I think, or things I'm going through. It's not just me that it does. Other people have those same experiences as they lose their weight.

Scott Benner 59:53
Okay, that's good, because that's what I wanted from it so and you know, you never hear the good stuff. You only hear like three. People were like, you know, say something bad to you about everything, everything you do. It's so strange. Roxanne, like, you know, yesterday is a good example, right? Well, over 10,000 people heard the podcast yesterday. If you get like, one like people, somebody's like, Oh, you, you know, I don't like this. You're like, oh, geez, that sucks. It somehow you forget that the 9999 other people are like, this really helped me. Thank you. You're like, oh, okay, nice to hear back once in a while like, oh, this was good for me. So I appreciate that excellent. Really cool for you to come back on. I want to wish you continued. Luck is sounds like you're really you're doing as best you can and better, you know, for all the different issues you have, and I'm glad that you're that you're happier and healthier. So exciting. It's nice to see as like,

Roxanne 1:00:50
I still look at pictures, and am I going? How did I was like, that's such that doesn't look like me?

Scott Benner 1:00:55
Yeah, no, I know I now think of myself as looking like this, but it still will startle you sometimes. Yeah, yeah. Because that story I told earlier that was sort of in the beginning, like, while the weight was coming off, and you'd like, see yourself, and you'd be like, That's not me. And they're like, Oh no, that is me. Okay, hold on a second again. That probably sounds silly to people having gone through it, because it felt silly when it was happening to me. I'm like, That's the dumbest thing that's ever happened. Like, how? What do you mean? Like, but there it is. Like, you turn a corner, and you're like, Who is that? And it's, you know, it's you. I will tell you, I'm super excited to go back and speak at this thing I have in the past. Like, I was once at an event, and they had a camera crew in, and I just said to them, like, look, please. Like, you know, can you stand them on top of a 20 foot ladder if he wants to record me, like, hey, could he shoot? Could he shoot down from the ceiling? Do you think as much as you go up there and let it go, because you're there to do what you're there to do, and I'm not going to stand up there feeling awkward in the lead up to it. You do there is that like, oh God, like, I wonder how I'm going to look. Like, I'm probably not going to look great, you know? And this is the first time that I'm gonna go to something like this, and I that's not gonna pop into my head. So it's just been really awesome, like you said. So all right, well, Roxanne, thank you very much. I appreciate, I appreciate you sharing this with us and for coming back on the show. Well, cool. I don't know, I don't know what we'll call this one, but we already use the best title for you, for anybody who's a fan of the Steve Martin movie, but we'll see what we can do. Hold on one second. Okay. Okay.

Us. Med sponsored this episode of the juice box podcast. Check them out at us, med.com/juice, box, or by calling 888-721-1514, get your free benefits check and get started today with us. Med. If you'd like to wear the same insulin pump that Arden does, all you have to do is go to omnipod.com/juice, box. That's it. Head over now and get started today, and you'll be wearing the same tubeless insulin pump that Arden has been wearing since she was four years old. If you're looking for community around type one diabetes, check out the Juicebox Podcast. Private Facebook group, Juicebox Podcast, type one diabetes. But everybody is welcome. Type one, type two, gestational loved ones. It doesn't matter to me. If you're impacted by diabetes and you're looking for support, comfort or community, check out Juicebox Podcast, type one diabetes on Facebook. Are you starting to see patterns, but you can't quite make sense of them? You're like, Oh, if I Bolus here, this happens, but I don't know what to do. Should I put in a little less, a little more? If you're starting to have those thoughts, you're starting to think this isn't going the way the doctor said it would. I think I see something here, but I can't be sure. Once you're having those thoughts, you're ready for the diabetes Pro Tip series from the Juicebox Podcast. It begins at Episode 1000 you can also find it at Juicebox podcast.com up in the menu, and you can find a list in the private Facebook group. Just check right under the featured tab at the top, it'll show you lists of a ton of stuff, including the Pro Tip series, which runs from episode 1000 to 1025 I can't thank you enough for listening. Please make sure you're subscribed or following in your audio app. I'll be back tomorrow with another episode of The Juicebox Podcast. Hey, what's up, everybody? If you've noticed that the podcast sounds better and you're thinking like, how does that happen? What you're hearing is Rob at wrong way, recording, doing his magic to these files. So if you want him to do his magic to you, wrong way. Recording.com, you got a podcast. You want somebody to edit it? You want Rob do?

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