Scott Benner 3/7/24 Scott Benner 3/7/24

#1145 Parenting: Transition of Care

Scott and Erika talk about how to transfer type 1 management to a child.

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

Scott Benner 0:00
Hello friends and welcome to episode 1145 of the Juicebox Podcast.

Erica Forsythe is back today Eric and I are going to kind of button up the parenting series with an episode about transitioning care. So we're talking about going from you being the one making all the decisions to handing that off to your child. While you're listening today. Please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your healthcare plan. We're becoming bold with insulin. If you're interested in learning more about Erica, she's at Erica forsyth.com. How would you like to help people living with type one diabetes and maybe help yourself? T one D exchange.org/juice. box, fill out the survey completely become part of the registry. And just like that, you've helped T one D exchange.org/juice. box now they're looking for US residents who have type one diabetes or are the caregivers of someone with type one. They're looking for everybody, but have a real focus right now on men, men of color, and of course, parents of boys. If you fit the bill, which is pretty much everybody, please reach out T one D exchange.org/juice. Box. completing the survey helps type one diabetes research helps the podcast and it will help you one day two T one D exchange.org/juice box. It takes about 10 minutes and they won't ask you one thing you don't know the answer to this episode of The Juicebox Podcast is sponsored by the insulin pump that my daughter wears Omni pod. Learn more and get started today with the Omni pod dash or the Omni pod five at my link Omni pod.com/juice box. This episode of The Juicebox Podcast is sponsored by ag one drink ag one.com/juice box. When you use my link and place your first order, you're gonna get a welcome kit, a year supply of vitamin D and five free travel packs. This is the transition of care handoff episode for the parenting series. Right? Yes. Okay. Do you think this is going to be the last one? Or do you think we're going to add anything else to this?

Erika Forsyth, MFT, LMFT 2:23
I think we could probably add more as we think of more ideas or we hear feedback or some more ideas.

Scott Benner 2:31
Let's call this the last one for now. Yes.

Erika Forsyth, MFT, LMFT 2:35
That sounds good.

Scott Benner 2:37
I get stuck too many times making series and I come out they make these definitive like this is the last one. And then like three weeks later, I'm like here's another one. I apologize. I didn't realize. So anyway, what would you like to talk about today? Okay. Well,

Erika Forsyth, MFT, LMFT 2:52
we're going to continue our conversation of we started in our last episode, overcoming parenting challenges. And we thought there would it would be significant enough to have this episode focused on the transition of care, and have the handoff, so to speak, and talk through some ideas and tips and suggestions. So

Scott Benner 3:16
are you telling me that in your mind transition of care, that handoff is a parenting challenge, but it's so meaty that it didn't we couldn't give it a little bit of space, and that other one it needed is an entire episode of its own?

Erika Forsyth, MFT, LMFT 3:29
That's what I'm saying, Scott. Okay.

Scott Benner 3:33
Well, I agree. So let's get going. You want to read through your ideas? Or do you want me to ask you questions? How would you like to? Well, I

Erika Forsyth, MFT, LMFT 3:40
thought, as I was thinking about this episode, I was I had that vision of a relay race of you know, for runners, but thinking about the first runner to the second runner handing off the baton. And in this analogy, it works. In some ways, it doesn't work in other ways. There is a start line diagnosis, the finish line, we don't have a finish line yet. But I think in this analogy, maybe thinking about this is the finish line everyone both parent and child feeling competent, competent in the management. And in this, when you think about if you've watched a relay race, there is a period of time in which the runner can hand the baton off to the next runner. There's like a there's there's markers. Yes. And also, this analogy doesn't really work because there are no rules right around when this baton when that line in real life should be passed on to your child. But let's just pretend in this scenario, every runner and every team does it differently like that once they pass that first marker line. A runner might hand the baton off immediately to the second runner. Some runners will hold the baton a little bit longer between the first and second runner and then some handed off right before that. Last kind of a marker where you can pass the baton off. And so I think it's important to hold that kind of image as we talk about this, because every family is different when they are handing that baton off every personality of the child and the parent is going to be different, different comfort levels. But we all all families will go through this transition time. Yeah.

Scott Benner 5:22
Do you think that, generally speaking, parents want to do this? Or do you think it's the thing that they eventually realized that they have to do? Or I guess maybe there are a lot of different personality types. In my heart, I've seen, I've seen my wife not want it to end. Like she doesn't want this leg of the race to be done. You know what I mean? And I am in the middle, I'm upset and saddened by it, when when there's a passing of the baton. But at the same time, I see the bigger picture, not that my wife doesn't see the bigger picture. I think it's just emotionally harder for her. But I wonder if there are some people who just don't want that separation? And if there are some people who want it too soon. And I hate to talk like that, but I do. I do sometimes see people that seem like they didn't really jive with parenting. You know what I mean?

Erika Forsyth, MFT, LMFT 6:15
Yes, I think I've seen and heard and read all different types of be their parents are, as you're saying, maybe wanting it too soon. But maybe that's because the child is really demonstrating independence. But I also hear a lot of parents talk about the guilt, like if your child is diagnosed younger, you are managing it as the caregiver. But then some parents feel guilty that they know eventually, it will need to be passed on to their child. So I think it really comes with as we talked about it so many different layers of emotions. Yeah,

Scott Benner 6:52
because it runs that gamut from, you know, basically saying, You're old enough do it yourself, which I've heard said at ages that it seemed, seems too young to me. And then there are some people like you said, who were just there, they are really helicoptering and they're not letting go. And And where does that happen? So it's much more about, it's the balance, right? It's the balance of your comfort and their ability. Does that make sense? Yes. Okay. I think the caveat here, that makes this difficult is the expectation for outcome. So if you don't know how I can explain this, then I'm gonna get out of your way and let you talk. But But what I, what I see happen so often with people with type one, especially for parents, for kids, is that they don't know all the time the successes that they could be having, right, they might get started with a doctor who tells them, Oh, your eight is a great a one, C, and then they get stuck there. And they don't think of it or they you know, they they cling to that. If it goes to 300 and comes back down, it's fine. Like that kind of stuff. Now, suddenly, that kind of management is what they think is normal. And they're not putting that much effort into it. Because nobody's given them any tools. And they figure the kid can do this. Like it does count these cards up, push the buttons, they get high, they come down, they get low, they drink juice, if they're low, that's the end of it, they're not actually focused on quality health, probably because nobody's told them how to accomplish it. So I bring this up, because I've had so many conversations with people in their mid 20s. Later 20s on up, that will tell me stories about like, oh, you know, I was 13. So I was old enough. And, you know, when I was 18, when I was diagnosed, so I was an adult, like, I don't know, like, that's a lot for a younger person to do. And the parents sometimes unknowingly even are just like, well, here, you're doing a good job at it, you're pushing the button when you're supposed to, and they don't even look at the outcome and then that kids off on a on the wrong path. Anyway, I've seen a lot of that. That's what always pops in my mind. First, when we talk about transition.

Erika Forsyth, MFT, LMFT 9:01
How the management starts, has an effect on the transition, obviously, yeah. And I think it's also important to note too, when you are newly diagnosed, I know we're talking about transition of care. I think the one of the things I was going to mention later on, but I can say it now is that a 12 year old, who's diagnosed as a 12 year old may act and look and function very differently in their management versus a 12 year old who was diagnosed at age two, and, and might be just thriving and managing independently because they've got 10 years under their belt.

Scott Benner 9:38
They've got more time in the simulator, right? Yes, they're doing Yes.

Erika Forsyth, MFT, LMFT 9:42
And in the beginning. Yes, you might go out of the gates with, you know, either not the right education or not really knowing having the tools, and you're overwhelmed with all of the things and the grief and the processing. But there's also still hope for the parent to learn and read remembering as the parent who is then as you're transitioning the care that you had a period of time of grieving of learning. And as you hand that off to your child, they might be going through that too. Even if you're like, 10 years into

Scott Benner 10:13
it. Yeah, I was just gonna say it doesn't matter. Maybe if you're at this for a long time, you've still been there helping or maybe doing all of it or most of it, now, suddenly, you're giving it to them, it's a new burden for them. Mm

Erika Forsyth, MFT, LMFT 10:25
hmm. Yes, to expect that, that they might have that an emotional response to it, even if they if even if you feel like they are ready. Sure.

Scott Benner 10:35
Oh, no. And they could they could be ready and still have that response? 100% Yeah, no, for sure. Wow, this is a lot, honestly. So like, go ahead, let's go through what you have here on our notes, and we'll pick through a little bit. In 2015, I needed support to start making this podcast and Omni pod was there. They bought my first ad, in a year when the entire podcast got as many downloads as it probably got today. Um, the pod was there to support the show. And they have been every year for nine seasons. I want to thank them very much. And I want to ask you to check them out at Omni pod.com/juicebox. There, you'll find out all about Omni pod five and Omni pod dash, you'll figure out why a tubeless insulin pump is probably right for you. And there are links to get started. Everything's right there at Omni pod.com/juice box. My daughter has been wearing an omni pod tubeless insulin pump since she was four years old, and she's about to turn 20. It has been a friend to us. And I believe it would be a friend to you, Omni pod.com/juice box. And of course, taking care of your health isn't always easy, but it should at least be simple. That's why for the last three years, I've been drinking ag one every day, no exceptions. It's just one scoop mixed in water once a day every day, and it makes me feel energized and focused. That's because each serving of ag one delivers my daily dose of vitamins, minerals, pre and probiotics and more. It's a powerful, healthy habit that's also powerfully simple. Before I was taking he wanted to get that brain fog in the middle of the day, and I just couldn't seem to get on top of it. But now that doesn't happen anymore. By starting my day with ag one I found focus and a renewed ability to perform at my highest level all day long. Drink ag one.com/juice box when you use that link, you're supporting the production of the Juicebox Podcast. I drink age you want in the morning, but you could use it as a coffee replacement before workout or in your smoothie. If there's one product I had to recommend to elevate your health, it's a G one. And that's why I've partnered with them for so long. So if you want to take ownership of your health, start with ag one try ag one and get a free one year supply of vitamin d3 k two and five free ag one travel packs with your first purchase exclusively at drink a G one.com/juice. Box. That's drink ag one.com/juice box, check it

Erika Forsyth, MFT, LMFT 13:09
out. Okay. Yes, emphasizing just like your parenting style, just like we've talked about attachment. We've talked about so many different things that it's really important as you're entering this stage of wondering should I should my child be taking on more? Is my child ready? Am I ready to focus in on your family? I think we it's really easy, particularly you know, when you're online comparing. And so seeing your peers, your caregiver peers, you yourself as a type one looking around saying, Well, gosh, my friend can do it. Why can I or as a caregiver, wow, that that kid is doing it. So just being really in tune with. Every family is different, and that's okay. And there's no hard and fast rule about when this should all happen. I think there are there are certain human you think about like milestones of your child like when should they learn how to brush their teeth on their own? When should they learn how to dress like there are some normal developmental milestones that your child should be hitting. This one, we often think about, like teenage years getting ready for you know, in high school going off to college is usually about the time. But again, your eight year old might be managing perfectly. So

Scott Benner 14:29
there's little things that I've done along the way. You know, Arden's 19. Now she's almost 20. But little little things like I talk out loud when I'm doing diabetes stuff with a younger person. Hey, you're about to eat. Now. That plate looks like wow, you know what I think I think the role is 25. And let's not forget there's some protein in that burger. So let's just throw in a couple more there and then these fries and there's fat in the fries, you're gonna get higher later. So I'm going to put this in here and then a little later I'm going to do that or I'm going to do a square wave Bolus or an extendable Whatever you call it, something like that, I'm gonna tell the algorithm, you know, whatever, whatever your management style is. So she hears it over and over and over again, Arden counts carbs, exactly like I do, we have never spoken about it directly. Like we look at a plate, she's always a couple carbs heavier than I am even. And so we're right in line. But that's just because I just would voice it. I wouldn't tell her. Here, watch how I'm doing this. It was never instructional it was just happening in front of her so that she'd pick it up as time went on. Same thing with filming stuff and changing things, I would just talk her through it like, Oh, we're gonna take this off now, because this is peeling on the corner. And so that one day, she'll seal peeling on the corner, and she'll think, oh, that shouldn't do that. Like, you know, I just think that's the way to go. But as to the age, I guess I'll save till the end how I did it. But it's tough to put a parent in charge of a decision like that, because like you said, you are knowingly given the kids something to do for the rest of their life, I've had that thought on my own, like, Oh, when I pass the baton completely. It's on her, like, I'm done, almost, you know, and that feels terrible. Like, I don't want that for her, it's different than go pay your rent, or buy your own damn cell phone like that, you know, like something like that. It's much different than that. And it can stop you. But I also know that there are some parenting styles that will allow that to completely slow down the process, if not grind it to a halt. And there are some parenting styles that will say like, you know, throw them out of the nest here and see if they can fly. I always said to my wife when she's defending our kids too much. I always go. Are you their attorney?

Erika Forsyth, MFT, LMFT 16:43
Oh, I bet she really likes that. She's

Scott Benner 16:45
thrilled with that one. Yeah. So oh, she loves it when I say that. But there are times where I'm like, You're defending them? You're not thinking about them? And that's, you know, I don't know. Anyway, keep going. Sorry.

Erika Forsyth, MFT, LMFT 16:59
Yes, it's the question is, you know, when I think it's we're trying to kind of define, but it's, you can't really define it, you know, when does this transition happen? Yeah. And I think it's partially yet maybe starting with age and stage and comfort of management. But also, I think, if you're like waiting for this moment of like, okay, I think my kid can do it now. That there might not be this, you know, aha moments. And so starting slowly, like you're you were demonstrating, you know, verbalizing what you're doing. They might be asking, you know, some kids, and a lot of, you know, teams I work with, they want more of that independence and freedom, freedom, really in autonomy with their life in general, because that's their developmental stage. But and then they want that in their diabetes. So as you're hearing your child ask, and or kind of wondering, maybe they should start to have more independence in their, in their management, checking in, okay, why, why am I resisting this as a caregiver? Am I fearful of relinquishing control? Is there grief in that process? Like you said, there's like a sadness. And that's all really normal to say, Oh, this is really hard. I need to grieve this.

Scott Benner 18:16
I also think it's possible that grief comes out in different ways. It's not as easy as they look sad. It could be rebellion in little ways, like just not doing it. Forgetting putting it off, yelling about it a little bit. I'm just going over the things that I've seen from Martin over the

Erika Forsyth, MFT, LMFT 18:34
years. Yes, yes. You know,

Scott Benner 18:37
I think you would listen to this podcast and think, Oh, this is amazing. That guy's daughter's got an agency and the high fives and I think right now, it might be again, I think it's five nine right now. And it's not a lot of effort. And you know, they know what they're doing, etc. But that's hard fought, like getting to that point. Took a lot of a lot of time. And it wasn't, it wasn't because Arden was like this simple kid who just loved it, like she's been on a couple of times. So I think people recognize that she's not that kid who's like, Oh, my God, daddy diabetes, I'll do it. That's not where she came from. Like, and I know, you're talking about that, that specific, like style of art, the way kids brains work, maybe. But I've also heard from adults who will say I was precocious as a child, and I was like, Let me have it. And they're like, I didn't really know what I was doing. But as soon as I said, Let me have it. My mom disconnected. That gets sent to me a lot. Like they just shut off. And there I've also heard from people who asked for the control from their parents, but not because they thought they were ready for it, but because they did not want to be involved with their parents about it. Yes, and that's a hard I mean, as you're sitting there, listen to this. This is a hard pill to swallow. Like, you know what I mean? Yes, imagine, you know, I'm sitting here I'm thinking what if my kid was like, I do not want to be involved with you. And so

Erika Forsyth, MFT, LMFT 19:56
they want to they want to cut off completely and do They're on thing. And that would include, you know, can can mom or dad follow me on the follow?

Scott Benner 20:08
That's a non starter for me. Yeah. Anybody who wants help Going to college is is, is getting fouled on their Dexcom that there's a simple rule for me. That's how I get paid back. What happens though Erica, though, when the kid wants the autonomy, but they really, they don't really want to do it, they just want to shut you out. I mean, you grew up with diabetes in a different time, right? You forge some diabetes logs in your in your day? Yes. So what happens when they say I got it, I got it, I got it. But on the other side, the agency is up and up and up.

Erika Forsyth, MFT, LMFT 20:38
I think that's going back to okay, if if your child is saying I want to manage this, I want to be more independent. I think if you are if you have that parent child relationship, to say, Okay, we are going to do this on a trial period, you have to earn it, like you have to earn the right to stay out later for curfew, you have to earn the right to drive or whatever other you know, stipulations you have to earn that trust, they have to you have to give them the opportunity to to earn it and then they have to prove it and continue that cycle.

Scott Benner 21:15
I find some of the hardest blending here comes because what we're talking about is not apples to apples, and you say like, Hey, listen, if you want to drive, you have to take the safety course first. Right? Right. But because diabetes is a safety issue, it's a safety issue. It's a health issue, but then it's also a personal issue. And it's an autonomy issue. And it's things you're not even thinking about which we've covered in some episodes. But you know, what's the most outlandish example I can think of, oh, if you're the child, if your child is young right now, and has type one diabetes, you're not thinking about the day that their blood sugar goes up when they're masturbating, and you come knocking on their door, and they're like, Get away from me like, like, there's that is going to happen like that. There are so many, like, human things that are going on with all of us. But now you're monitoring them. I don't think any human in history of humans has felt good being monitored. And so you're right. It's not it's not a human trait to just go Yeah, sure. subjugate me, because that's what it's gonna feel like, though, as they start getting older and older. So what the hell do you do? I

Erika Forsyth, MFT, LMFT 22:26
was even I noticed that, like, it's such an interesting thought around being a teen now being followed. Multiple people know your blood sugar at all times. Some people use lifescan, 360, or live 360. Where are you? All right. You know, where you are. As a parent, you know, your child is all the time you're being constantly monitored. That raises anxiety levels, I imagine most of the time for one or the other. Do

Scott Benner 22:54
you think people are really stalking their kids? I know, I can find my kids phones, but I don't. I did. Once when Cole moved away the first time first job, I, oh, my God, I want on his first day of work. He was driving through Atlanta to go to work. And I knew he was leaving. And it got in my head. I wonder if he's on time. And I opened up my phone, and I could see that he was driving. And then I got very melancholy and watched him drive. I've watched the little stupid icon drive the entire route through Atlanta. Alright, I'm sorry. Oh, God, I hope he never hears that.

Erika Forsyth, MFT, LMFT 23:32
But does he did he make it on time?

Scott Benner 23:34
I don't remember that part. I just remember thinking like, like, if the car keeps moving, he's alive. Like is how it felt? You know what I mean? And so, and I don't know why I feel like he's a great driver, who's 23. Anyway, but do you think some people are always looking? I guess they are right. And then the kid knows that. Because you know, people say, like, I saw you went here and look at my phone, and then then you're feeling judged about every decision you make that impacts your blood sugar. Got it?

Erika Forsyth, MFT, LMFT 24:04
Yeah. And while all of this data and technology increases, support, you know, safety and hopefully reduces long term complications and the risks of lows. I'm talking about the follow up, but also even the follow up, you know, find my and live 360 Those are all great things, but I think as caregivers that just will raise anxiety and and as a teen I think having these types of conversations to have an understanding of like, okay, can you if you are going to follow my app and if that is a non negotiable if you're going to follow me on on the decks or whatever other CGM. Can we not talk about it constantly. I think I'm sorry, we're kind of going back and forth here. But as like the if the child is wanting that independence, and you're saying okay, let's do a trial period of Okay, so you're but I'm still going to follow you. It's your then maybe the freedom in that 24 hour period is you aren't saying okay, your your rising 50 points, correct? Correct. Correct. Or you're going low. I mean, obviously, there's, maybe you have a, an emergency, if you're going to such and such a number to arrow down, we're gonna do something. But everything else,

Scott Benner 25:22
you gotta have to let go a little bit, just like, Oh, yeah. So I've learned to do that. Over the years where if Arden's blood sugar gets above where I think it should be where I know, like, I'm looking at them, like, we could fix this in two seconds. But she's in class, and she's not thinking about it right now. Like, what's the last thing in the world she wants is a text from me that says, hey, you bump your blood sugar down a little bit. I do save it for moments when I think it's a big deal. You know, safety moments are one thing, but I also think of high blood sugars as safety as well. You know, if a couple of hours go by, and she's one, I don't want people laughing at me. If she's like, 150, or 160, like for a couple of hours, Arcus like, Oh, my God, oh, my god. I'll say to her, Hey, like, you know, is that algorithm suggesting any insulin? Because give it, you know, and, and we've come to a place, it's okay. Now, like, I don't say too much. And she accepts it when I say it. Like, it's the I think I've demonstrated the value of my words, by having an economy of them, if that makes sense. Yes, yeah. And I

Erika Forsyth, MFT, LMFT 26:34
think before going back to the initial stages of your child is wanting to be independent. And I think going back to your question of, is your child wanting to be independent? Because they don't want to be in a relationship with you? I mean, I think that's that can happen for a lot of teenagers for a season? Or are they wanting to take care of their diabetes by themselves? Because they feel like they can? I honestly don't know if that really matters in the beginning. Because they're wanting that independence. Yeah. And to say, okay, here are the boundaries, let's give it a try for six hours, 20, whatever, whatever our amount that you both agree on, and then have that okay, when can I, as a parent, suggest, you know, we have the safety boundaries or safety protocols? And where are you comfortable with? And maybe 24 hours? You guys agreed to do nothing? I don't I don't know. It depends on what you want. I think it's important to listen to your team in those initial requests. I'm saying team, but it could be younger. Anybody? Yeah. Yeah, Arden

Scott Benner 27:38
and I have a shorthand, where if she just ignores something completely, or she really screws, the pooch, somehow, then all of our niceties go out the window. And she's accepting of that, too. Like, I will sometimes be like, you know, so I'll see that her schedule has her in class all night, right. And I can see her pump has kind of 15 units left at it. And I look and I go, she's going to try to get out, go through class and come out of class. Without changing the pump. She's gonna want to do it afterwards, right? And I'll say, maybe, hey, listen, I think you might save yourself a lot of trouble here by changing your pump in the afternoon. And then she doesn't do it. And then the night comes along, and I'm now seeing there's a unit left in the pump. I'm like, Hey, now's the time, we're gonna go change the pump, like no more, I'm going to try to make it I'm going to do like, it's over now. Like, you're not going to be without insulin, like like now. And then she'll go hard, or I'll do it. Or like, the other day, I sent her a text and I said, I need just to change your insulin sensitivity. By one point, make it one point weaker overnight, because you're getting these little lows overnight, and I think this is gonna fix it. I mean, she's using Iaps right now. But I just wanted to just adjust the tiniest bit. So the next night when I was woken up in the middle of the night and had to text her. I was like, she didn't make that change. But it didn't say anything, then because it was three o'clock in the morning. And that would have been ridiculous. And I waited till the next night, which was last night. And we were actually sitting and talking about something else. She was showing me something she was working on. And at the end, I said, Hey, how did it go change in your insulin sensitivity the other day? And she goes, it went great. Then she smiled, and I went, you didn't do it, right? Just I did not. And I was like, Okay, I said, Well, can you do it now for me, please? Just while I'm just getting ready to jump out, I'm going over this lab and I'm gonna do some drawing with somebody. And I was like, That's great change in sensitivity. That's it because it was like late night, Friday night, and I was like, it's going to your thing's going to switch to 11pm and then I'm going to be up at 3am If you don't make this change, and she's like, okay, okay, okay. I'll do it. And I wouldn't do it now. And she's, I can't I'm rushing out send me a text and I went, come on Arden and she goes if you text me I'll do it. I was like Okay, so I sent her a text now, we'll wait another night and see what happens. And then I'll ask her if she did it again. And that might throw a lot of people be like, Oh my God, that's so much like just turn the dial kid. But that's me trying to do what you're talking about. Let her be your own person. Not forced things in though I mean, she's not like, she her blood sugar is not 20 overnight, like, it's like dipping under 70, you know, and I'm like trying to make a little adjustment to it. I honestly think that most of what we're talking about is alleviated, or at least made much easier. If you go to the Pro Tip series and learn how to use insulin. I know that that might be sounds like me trying to get people to listen to the podcast, but I 100% think that if you are making decisions that are ending the way you expect, then it's a lot easier to say to the kid like, hey, go ahead, give it a shot. I know that, you know, one plus one equals two, like we're good. I think a lot of the concern comes when people don't know what they're doing. And they're like, oh, I don't know what, you know, the kids high all the time. They're low all the time. They you know, that kind of stuff is scary and dangerous. And isn't that the place where you have to put your foot down no matter? What, if they're high? I mean, yeah, I mean, if we're like just ignoring thing, like, you know, if a day turns into a week, turns into a month turns into a year. And the next thing you know, you look up into kids, a one says 10. And they're going I can do it? They can't. Right. So what do you do there?

Erika Forsyth, MFT, LMFT 31:27
I know, that happens that that situation is out there. And I know, it's so, so heartbreaking and painful. And so you know, as a caregiver, you experienced such a sense of powerlessness, and also really grief because your child is demanding. You've Allah and you've given and they're now they're 20, and they're don't know how to manage, I would then attribute that to a bigger issue, right? Is the child is that now your child is an adult or whatever age? Obviously having an emotional response, a lot of feeling with the diabetes, it's not. And I would also look at, you know, how are they functioning and other areas of their life? Are they thriving in every area? And they just aren't don't really know how to manage their diabetes? Or are they really struggling across the board I would be looking at is there a lot of baby depression, anger, trauma around having the diabetes that maybe hasn't really been properly addressed? And so it just feels easier in the moment to ignore it.

Scott Benner 32:34
I think my my quandary is, I'm a tough love person, like, generally speaking. But if tough love means you're going to, like lose your eyesight when you're 35. Then what do I do? Like, do you mean like the sink or swim comes to mind, but it's such a, it's not like, it's not like I said, go to college, and you said, I want to work at McDonald's. And I was like, sink or swim. Like, you know what it means like, you'll still you'll have a job, you'll be working in McDonald's, and you'll probably buy, there's jobs pay pretty great at this point, you're probably doing fantastic. But, but this is a different thing. Like in my mind. You know, if you don't, I have to say this, the harder decisions that I've made about transitioning ordens diabetes over the years, have always been fueled in the back of my head by the idea that I really only have like, till she's 22 to get it accomplished. Right? Like I can hold on 1819 20. Like, you know, like, I'm paying for college, like pay attention. Like, you know what I mean? Like that kind of stuff. But after that she's gone. Or whatever I gave her and whatever she decides to do is the only thing she's going to do. I mean, I've seen adults, adults who are parents of children with diabetes, and their kids have gotten older, and their kids cut them off from knowing about their blood sugar's and it's heart wrenching to them, because they assume that they're not okay. Because if they were okay, they would tell me they were. So they're not. That's why we're not talking about it. And then you worry for the rest of your life. Eric, I don't want to worry for the rest of my life. I just want a couple more years left. Just want to relax. It's a bigger that it's a bigger problem. It's not it's very much unlike all the other parenting issues that come up with children. And it's why you see so much hand wringing about it online. And And isn't it fascinating how it hits people right away? Like if their kids are two years old? They're already worried about it. Yes, yeah.

Erika Forsyth, MFT, LMFT 34:35
Thinking Yes. About the independence about their next stages of life, adulthood, you know, children. Yeah, it's I know, it's easy and painful to go there. And you mentioned worry, are you going to worry the rest of your life and, you know, I haven't personally launched my own children. But I think as going through that, those stages myself I think there's a sense of knowing that your parents trust you. They've done what they've could. And they are watching you. And that's that. And it's, it's hard.

Scott Benner 35:13
I think for the great many of us, this is what's going to happen, and it's going to be okay. I really do believe that I genuinely think for most people, it's going to be okay. But there are plenty of people listening right now. They're like, look, my kid is a mess, you know, and they have diabetes, and they show no interest in it whatsoever. And I don't see how that's going to change. Those people are in a they, gosh, it almost makes you feel like they have a child that they're never going to completely be able to separate. Yes.

Erika Forsyth, MFT, LMFT 35:41
And I know that that can happen. And there's often you know, this sense of, is it too late to help my teen child adult child take responsibility. And, you know, I don't want to say sometimes maybe it is at some point too late. And then they as adults, they are going to have to figure out how to accept, grieve, accept, manage independently. And I don't know, there isn't like an exact timeframe. But I know that that that can happen. And that's a really, really challenging place to be as a parent,

Scott Benner 36:15
through a lot of our conversations. I'm always struck by the kind of core idea that it seems like it's impossible to make somebody care about something they don't care about. Yes. It just really just seems like there's no amount of teaching or trying or showing, that can just change someone off of something that they don't find important. It's one of those like human things, that eats, like inside of my chest, I think about it all the time. Like, you know, because of kind of what I do for a living honestly, like, there are plenty of people who will say things to me, like, I don't learn well by listening. And I'm like, so why I'm like, like, you're telling me that, like, it's hard for you to listen to a podcast, I understand that some people don't learn well, by listening. But you're also saying, on the other hand, my agency is nine, and I'm really in trouble. And I want to do something. And I've heard that you have this thing that helps people and I go Yeah, listen to these 25 episodes, I think you'll be okay. Oh, I have trouble listening to things. Well, okay. And then I try another way to explain to him like, well, I have transcripts, it's a lot of reading, I'm like, No, okay. You know, like, like, in that same way with kids, like, you can tell them something 1000 times, and if it's not something that they jive with, it's not something they jive with, but then it's this thing, and then what's coming next is really coming, you're not going to avoid it, that's for sure. You can't wish it away, you can't put your head down. And at the same time, as I'm being a bummer, I really do want to say I think for the grand majority of you, it's probably going to be okay. You know, if someone came into your office and had a kid who just like was a wall didn't care wasn't doing anything. Would you think that something like that I let pump would be a good midway point like, hey, look, this pump just, you know, it's only going to keep your agency in the sevens, but all you have to do is tell it it's breakfast, lunch or dinner? Small, medium or big? That would be a good idea in that situation, don't

Erika Forsyth, MFT, LMFT 38:16
you think? Yes, yeah. Yes. If, you know, obviously, if the if that child is open to having the pump on them, but I think that would be a wonderful alternative than either, you know, not injecting or not, you know, giving the carbs or whatever it is, I think that's a really nice option for people to really minimize, or just reduce the amount of decision making an action you have to do. Yeah, yeah, I think that's a I haven't read a ton. But I know I hearing more and more people start to use the pump that I love pump,

Scott Benner 38:50
I mean, I let pump is they're saying in the sevens, I'm saying, if you're going to ignore your diabetes, you're going to be in the nines and 10s 1112 13. Like, I mean, just take the seven and don't know what you're like, there's got to be a point I'm not saying the eyelets give up. But in a situation like that, you know, stop thinking you're gonna get down the sixes or the fives and just go with healthy and, you know, and, and happy to, you know, at some point, it's not, it's not your life to live. Obviously, it's a hard thing to say, right? It's not your life to live. But the thing that I would always be concerned about is, is the child decision making process being impacted by these lower higher or vacillating blood sugars? Like maybe you're not really talking to all of them? You know what I mean? If their blood sugars are bouncing all over the place too.

Erika Forsyth, MFT, LMFT 39:41
And yes, like how can they be in a grounded place to say, okay, isn't ready to take it on or I don't want to take it on if they aren't feeling good, physically, and emotionally.

Scott Benner 39:54
Okay, is it fair to say that having a really high blood sugar for a long time can make you feel foggy? Yes. right is that is it akin maybe to being up for like 20 hours straight and being exhausted, but trying to keep going or something like that like, is that when you'd ask your kid about a thing? Like, do you know they mean like, right? But if their blood sugars are high all day, and you're like, You got to take care of this on your own, you're not getting the full capacity of their brain back, you know? And even bouncing blood sugars. I don't know, if everybody realizes that going low and high and low and high over and over again, we have a whole episode about it. I think it's called altered mind about how vacillating lower or higher blood sugars change your ability to think and perceive things. So 100%?

Erika Forsyth, MFT, LMFT 40:36
And it's yeah, it's super fatiguing. You feel very lethargic,

Scott Benner 40:41
I guess my point is, is that I really do think if you understand diabetes, even a little bit, and you've got some stability, most of your kids like Eric has been saying through this whole thing, there's going to be a certain time for them. And you'll see it right, you'll you'll hold that baton out. And you'll feel well, it's time to let go. And just make sure you're not the one who's screwing up the transfer.

Erika Forsyth, MFT, LMFT 41:04
Or holding on too tight. If they're ready. Yeah, because it

Scott Benner 41:06
falls on the ground, everybody kicks it, and then somebody falls in those little shorts. And it's very painful.

Erika Forsyth, MFT, LMFT 41:12
Yes, and I think in that if you are fearful of letting go as the parent, you know, is and you truly feel like you're you have, you know you're competent in the management, your child is learning and understanding it, but you just can't quite let go. And that happens, right? Because you're fearful. And there's you want to protect your child? And does this feel like you're not protecting your child by letting go of the baton? I think going back to basic reality checking up, okay, we have the app when he knows how to correct he has his snacks, all the people know around him, like really doing the basic reality checking of because the fear is, you know, I don't want my kid to go low and have a seizure die. And I don't want him to have long term complications, right? Those are I mean, that's what we're talking about when when we're when we're boiling it down. Yeah, that's what we're talking about, right. And so really, and having to remind yourself, write it down, pin it up on your mirror, but if it's the, you know, when it's the child who's not wanting to hold on, or wanting to rip it out of your hands, I think just going back to this is like these are logistics, these are management styles and tools. And I think having the understanding, knowing how to do it is really significant and important in this process. But also reminding yourself, there's so many emotions involved. And is it a matter of acceptance, has your child not truly accepted it? Here, that's okay. Give them that give them the skills, the tools, the support to do that, in addition to the logistical management,

Scott Benner 42:47
right. And I'll just say if you happen to be a person who is just disconnected from this, and, you know, I don't think anybody would probably admit this out loud. But if in the back of your head, you're thinking, I can't wait for this to be over. And for this to get off of me and beyond somebody else, at least do them the favor of teaching them how to take care of themselves well, before you before you do that. And I even understand that I'm not judging anybody. But you know, if it's too much for you, as the parent, offloading it, and hoping they figure it out, I mean, you couldn't figure it out, right? So what are the odds, take them somewhere to a doctor, let them listen to podcasts, like do something like try to get them to a better place, don't just set them out on their own, and say, I don't know, walk West, you'll find it, you know, because that's, that's not gonna work out. You're also this conversation is reminding me that Arden has been back at college for a week now. And I have to send her the text that says, Please refill your vitamins. And if you haven't been taking your vitamins, please start taking your vitamins. I only asked her to take like two. And I'm like, just take these two vitamins. She's like, I will, I will. But the last time she came home with her little vitamin thing. And I she was unpacking and we were helping her on pack and I was like, This is how I left it when I left it with you last time. And she's like, I didn't take those. So I was like, oh, Arden so and she's 20 in easy to get along with. So 1920 years old, she's easy to get along with. And those vitamins sit right next to her bed. They're staring at her. I think it's an act of will not I think it's probably more work not to take the vitamins than it would be to just take them. But I do wonder if sometimes if that's not a little bit of trying to find control, it's something don't you think?

Erika Forsyth, MFT, LMFT 44:39
Having control or just feeling maybe also loaded down with everything else and just like I can't I can't open the container and pop the pills because it just is one more thing and I get to choose. But yeah, having that sense of like power control of what I can and can't do and that's that's normal and And maybe, if that's the one thing she's choosing not to do, maybe that's, that's okay. But I know you want her to take, you're like, No, she needs to take vitamin

Scott Benner 45:10
D to be high enough. That's all. Vitamin D, little bit of magnesium oxide. That's all I'm looking for it not a ton of facts. I'll tell you right now, what you're making me think of. If you have sent one of those kids off into the world, that's not doing a good job for themselves. And they're partnered up with somebody, I don't know that that's a terrible way to attack this, which is maybe go to the partner and say, hey, look, this is none of my business, they're going to be definitely pissed if they know I came to you about this, but there's some certain things they're supposed to be doing. And, you know, if you can find a way to learn about it a little bit, and just over, you know, just look over their shoulder once in a while and see if this is happening, you're going to be helping them. I know, that's probably not a good thing to bring up like, psychologically, but it popped in my head. Because the only thing that I've ever seen change a person is the desire to do it for somebody else or some other thing. That's the only thing that I have consistently seen work in humans. Right? I'll do it. I won't do it for me. I'll do it for an unborn baby. I'll do it for the idea that we're going to get pregnant. I will do it because I looked over at my kid one day and realized, oh, hell, that kid needs me to pay for stuff for the next 20 years. I'll bring my a onesie down. Like that's the only time I see it. I talked to so many adult type ones. I just started using a pump last year. I'm like, why? Just last year? Oh, you know, my daughter was diagnosed, she got on a pump. And she didn't want to get on it. So I did it too. So she would be and I'm like going, how's it going for you? Oh, I should have done it years ago. You know, like, so? Those are two things I know for sure about people, it's you can't make somebody do something they don't want to do. And the only thing I've seen change people's minds is the desire to do something for another person. Love is actually the thing that I that I would say if I had to narrow down to one thing. Yes,

Erika Forsyth, MFT, LMFT 46:59
change is hard. And finding the motivation to change is even harder. And it may be it is just that sense of love for somebody else. To make the changes for yourself to be there for them. Yeah, it is.

Scott Benner 47:15
existentially does that mean that I don't love myself enough to do it? Is that what Freud would say? Yes,

Erika Forsyth, MFT, LMFT 47:21
but yeah, yes. Yeah.

Scott Benner 47:25
But does that even is that true? of everybody? Like do people? Is my daughter not taking your vitamins? Cuz she doesn't love herself enough? No. Yeah. So

Erika Forsyth, MFT, LMFT 47:36
I think it would be hard. I wouldn't make that like as a tried and true statement. I think there's so many there's so many layers to why, like, why am I not taking care of myself or my diabetes? Is it because I don't love myself? Or maybe it's just because I hate the diabetes, but I love everything else about myself. You're

Scott Benner 47:55
punishing the thing. And it's interesting. It's all very interesting. Anyway, did we cover everything? I you put a nice note in here about something that I've said in the past, and we never got to it. So what about the college? Yeah, you know, about the laying breadcrumbs? I said that in front of you one time and you loved it enough to write it down? You did? Yeah. Is it just because I said I leave bread crumbs for art and defined? Yes. Yeah, like ideas of, you know, I just I say things out loud. And I'm like, Cool. She follows that along. I'll drop it off on later and try to keep her going. But yeah, your point about college, we didn't get to it though. Let's

Erika Forsyth, MFT, LMFT 48:32
just say it's not an ideal situation, and your child is wanting to independence, they're going off to college. They're still figuring out how to manage to have maybe one non negotiable around the management piece that their roommate, the floor resident are a person. Anyone else that's kind of in a consistent circle, have your child that they know that that your child has type one they know where the glucagon is for emergency, right? Because your child can do everything independently except for if they're unconscious. Right. I think that's a really important non negotiable for this is like for the child who's leaving, obviously the house for college. Even that might be challenging, right to get to an understanding and agreement to but the hope is that you know, you you want your child to live. Yeah, survive. Arden

Scott Benner 49:25
was very amenable to that. Two of her three roommates follow her on Dexcom they only have the 55 alarm set. So the earth the urgent alarm is the only alarm it's at Arden does not reach 55 with any, you know, reasonable, you know, on any reasonable schedule. So that's there is an emergency. And have we talked about the glucagon fire drills they do? No, I must have talked about it another episode. Oh my gosh. So they do fire drills where they make art and pretend to be having a seizure, and then they run around and get her Chivo type of pen and stuff like that. And they go through the steps of everything before they do it. They are laughing about it while they're doing it to be clear, yeah, these four girls, that was it. So they are just like in that was the girls idea. Like the one day the girls came in, and like we need to, like, tell us this again. Like what is this? You know, because we talked about it like the first try to imagine the first day they moved into college. We took all the girls out to dinner. And we were like, look, you know, a couple of things about art. And she's explained to you. And you know, here's the key imagine you're 18 you're probably like, oh, what I'm just trying to get drunk, like this girl, this girl bite what? And so like, you know, we explained it all to them. They were very nice about it. And then Arden said a couple of weeks later, one of them came in said we should practice with this. And then they were laughing. They were laughing. And they were like lay down and shake, and we'll do the rest. And so like they actually now they do that for fun. turned into a play thing. But I've also talked to people whose kids are in college. We're like, I'm not telling anybody about this. And I agree with you. Like one person needs to understand this. That's it. And also, I need to know how to call your roommates. That was the thing we did. So I have like, Arden's roommates are in my phone. And you know, it's happened, I guess twice now once where I actually couldn't wake her up. And she was pretty low. And one of the girls went and got her and gave her juice and she was fine. And there was once where I, I moved a little too quickly. And then I heard about the next day.

Erika Forsyth, MFT, LMFT 51:40
Like you reached out to the roommate.

Scott Benner 51:41
Yeah. And I heard about from Martin. She's like that was not necessary. And I was like, you want to try being 700 miles away when your blood sugar's 52 with an hour down because it felt necessary to me and you didn't answer your phone. She's like, I was handling it. I was like you didn't answer the text. So they got the call. And you know, now she's better about it. She She's more responsive now. And I think again, maybe to protect her friends. More than ourselves. Maybe you know, maybe. Yeah, interesting stuff. Oh, anyway, yes. Good luck, everybody. Good. Yeah. It makes me

Erika Forsyth, MFT, LMFT 52:12
wonder how did I survive college? I don't know. Well, you

Scott Benner 52:16
know, were you thinking about your mom when you were talking about this? Because your mom raised two kids with type one. Right? So I wonder what she did? We did not have any of this Dexcom we did not have follow find anything? Yeah. I don't know that find your iPhone is my best tip for people who have iPhones. If your kids don't respond, you can send a find your iPhone signal that is piercing on the other? Eye? Yes, I've

Erika Forsyth, MFT, LMFT 52:46
heard that. Yeah, I've

Scott Benner 52:47
done that a couple of times over the years. Did we miss anything? Are we? Are we good? No, I

Erika Forsyth, MFT, LMFT 52:52
think you know, as we as we always hear the like cliche, from upon diagnosis. And then in this transitional period, it is trial and error. But I think we often will be here that we still think like we should nail it and have no mistakes, no growth pains. But like it is trial and error. So they're expect errors. Yeah. And I know that there's like maybe that's not the right term, but in this phrase, you know, expect that there's going to be painful bumps, your child is not going to get it perfectly all the time, just like you didn't as the caregiver learning initially,

Scott Benner 53:31
you absolutely have to step back and see big picture on this one. This is a slow transition really slow. You know, Erica, you might imagine that throughout the years of me doing this, one of the most aggressive questions I've gotten from adult type ones who listened to me talk about this are like, Yeah, you're sure but then your daughter doesn't know how to do this. And I'm like, No, she's learning slowly. And then I would tell them the same story over and over again, I was like, you know, you send your kids off to school on day one, and they come home and they don't know how to add. There's no day where like a bell goes off, and they know how to add it just gets to the end of the year. And they're like, Hey, turn to us for like, oh, it happened along the way somewhere. Alright, so you just keep having those experiences. Like you're you're calling them trial and error, but their experiences, they go one way or the other. You'll learn from them eventually, and you move on. It's why I tell people not to beat themselves up. I would say never spend the time beating yourself up about a decision when you could spend that same time learning from it. That just makes sense to me. We already went through it. We already screwed it up. Let's figure out what we did. So we don't do it again. Like instead of you know, seriously, like whipping ourselves in the background here about it. Like let's just let's just look at it. See, see what it was keep moving. A lot of it's keep moving and then one day you just look up and you know, it works and you don't even know how the hell you got there. So that's life basically. Yes, there you go. Yes, I just fixed your whole life or keep going keep trying I think it'll be fine. And if it's not, I don't know what to tell you

Erika Forsyth, MFT, LMFT 55:07
lost the lottery, I don't know, be kind to yourself.

Scott Benner 55:10
See, Eric is still as good advice at the end of it. If it doesn't go your way. Be kind to yourself. It's, you know, I'll finish by saying that when Arden was diagnosed, I almost immediately had the thought that this is not the life, I thought I was going to live. I was just somebody just shifted me drastically out of the lane, I was in into another lane. And it takes you a long while before you realize there is nothing you can do to get out of this lane. diabetes is here. Now. That's it, it's not going anywhere. My kids got type one diabetes, this is where I live, you can be happy in that lane, and fulfilled. And more more than that, like you can do everything you were going to do in the other lane, you can do in this one, too. You just have diabetes, and this stuff comes along with it. It doesn't change the rest of it at all, unless you let it. And I don't usually talk like that. But I do think that's true. Like if you if you can get good management ideas, learn the tools, use them reasonably well. With the exception of some bumps once in a while. You're gonna live the same life you thought you were going to, but it just doesn't feel like it when it first happens is all.

Erika Forsyth, MFT, LMFT 56:23
Yes. And I think you even said in a previous episode, you know, no one delivers a child and expects them to be diagnosed with something or have a hardship. Yeah. And so there is that you know, from from the lane that you had envisioned for your child to moving over to the lane that you envisioned with your child with diabetes. That takes time that can be painful. Yeah, just switch those just switch lanes. And I appreciated that. Yeah,

Scott Benner 56:55
I appreciate you remembering that everybody gets something like you know, I see a lot of perfectly healthy kids on tick tock, flip it over railings and landing on poles two storeys down, I think, oh, not a health concern in the world. Just stupid about that. too, just because your kid doesn't have diabetes. You know, because you can look at that sometimes you can look at other people in the world and say, yeah, they're so lucky. They don't know. But you you don't know, either. Right. Like they might have something else going on. Or just, you know, I don't know. I just think everybody gets something. That's sort of how it seems to me.

Erika Forsyth, MFT, LMFT 57:30
Yes, but you don't live with that necessarily that expectation No, no, be maybe you're right.

Scott Benner 57:36
Oh, no, I really thought I was going to be six, three way about 180 pounds, ever perpetual tan be very handsome. You know, everything I wanted. Money would fall out of the sky on me stuff like that. None of that's happened. I appreciate you doing this with me very much. Yes.

Erika Forsyth, MFT, LMFT 57:53
You're welcome. Thank you. I'll see you next time. Okay, bye bye.

Scott Benner 58:07
If you're living with type one diabetes, and you think therapy might be right for you, Erica Forsythe may be able to help check her out at Erica forsyth.com. I'd like to thank ag one for sponsoring this episode of The Juicebox Podcast and remind you that with your first order, you're going to get a free welcome kit. Five free travel packs in a year supply of vitamin D. That's at AG one.com/juice box. If you'd like to wear the same insulin pump that Arden does, all you have to do is go to Omni pod.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. The afterdark series from the Juicebox Podcast is the only place to hear the stories that no one else talks about. From smoking weed to drinking with type one perspectives from both male and females about having sex with diabetes. We talk about depression, self harm, eating disorders, mental illness, heroin addiction, use of psychedelics, living with bipolar, being a child of divorce, and honestly so much more. I can't list them all, but you can by going to juicebox podcast.com. Going to the top and clicking on after dark. There you'll see episode 807 called one thing after another episode 825 California sober. Other after dark episodes include unsupported survivor's guilt, space musician, dead frogs, these titles will make you say what is this about? And then when you listen, you'll think that was crazy. juicebox podcast.com Find the after dark series. It's fantastic. When you support the Juicebox Podcast by clicking on the advertisers links you are helped means to keep the show free and plentiful. I am certainly not asking you to buy something that you don't want. But if you're going to buy something, or use the device from one of the advertisers, getting your purchases set up through my links is incredibly helpful. So if you have the desire or the need, please consider using Juicebox Podcast links to make your purchases. If you are a loved one has been diagnosed with type one diabetes. The bold beginnings series from the Juicebox Podcast is a terrific place to begin listening. In this series, Jenny Smith and I will go over the questions most often asked at the beginning of type one. Jenny is a certified diabetes care and education specialist who is also a registered and licensed dietitian and Jenny has had type one diabetes for 35 years. My name is Scott Benner and I am the father of a child who has type one diabetes. Our daughter Arden was diagnosed in 2006 at the age of two. I believe that at the core of diabetes management, understanding how insulin works, and how food and other variables impact your system is of the utmost importance. The bold beginning series will lead you down the path of understanding. This series is made up of 24 episodes, and it begins at episode 698. In your podcast, or audio player. I'll list those episodes at the end of this to listen, you can go to juicebox podcast.com. Go up to the menu at the top and choose bold beginnings. Or go into any audio app like Apple podcasts, or Spotify. And then find the episodes that correspond with the series. Those lists again are at Juicebox Podcast up in the menu or if you're in the private Facebook group. In the featured tab. The private Facebook group has over 40,000 members. There are conversations happening right now and 24 hours a day that you'd be incredibly interested in. So don't wait. So don't wait. Check out the bowl beginning series today and get started on your journey. Episode 698 defines the bowl beginning series 702, honeymooning 706 adult diagnosis 711 and 712 go over diabetes terminologies in Episode 715 We talked about fear of insulin in 719 the 1515 rule episode 723 long acting insulin 727 target range 731 food choices 735 Pre-Bolus 739 carbs 743 stacking 747 flexibility in Episode 751 We discussed school in Episode 755 Exercise 759 guilt, fears hope and expectations. In episode 763 of the bold beginning series. We talk about community 772 journaling 776 technology and medical supplies. Episode Seven at treating low blood glucose episode 784 dealing with insurance 788 talking to your family and episode 805 illness and ketone management. Check it out. It will change your life. The episode you just heard was professionally edited by wrong way recording. Wrong way recording.com

#1144 It's Never Sarcoidosis

Jonathan is a 30 year T1D who recently had his colon removed.

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Hello friends, and welcome to episode 1144 of the Juicebox Podcast.

Today, I'll be speaking with Jonathan who has quite a story. He's had type one diabetes for 30 years and he's had recently his colon removed. There's a lot to this story that you're going to be interested in. So get comfortable, and we'll get going. 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. When you place your first order for ag one with my link, you'll get five free travel packs and a free year supply of vitamin D. Drink ag one.com/juice box. 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 juice box at checkout. That's juice box at checkout to save 40% at cozy earth.com. And I have a unique opportunity for you to help people living with diabetes, go to T one D exchange.org. Forward slash juicebox and fill out the registry survey. Just complete the survey and you will be helping people with type one diabetes, you might also be helping yourself. They're specifically looking for men right now to jump over there and take a look if you're the mother of a child who happens to be male that counts just the same T one D exchange.org/juicebox. US residents only. This episode of The Juicebox Podcast is sponsored by cozy earth.com Cozy Earth is where I get my clothing, linens and towels from they are incredibly comfortable and temperate. I love them. I really do love them. And I love that I can give you an offer code that will save you 40% off of your entire order. Just use the offer code juice box at checkout and you will save 40% at cosy earth.com us med is sponsoring this episode of The Juicebox Podcast and we've been getting our diabetes supplies from us med for years. You can as well, US med.com/juice box or call it 888-721-1514. Use the link or the number get your free benefits. Check it get started today with us med.

Jonathan 2:34
I'm Jonathan. I'm a type one diabetic, where an ostomy is so I do not have a colon. And I started a nonprofit to help folks with chronic illnesses get outside safely and have some fun.

Scott Benner 2:48
Wait, hold on. Kathy. I don't know if you broke up. But Jonathan lives in a place where there's like four cows and a bird. So what you have a wide.

Jonathan 2:58
So I have I had my colon removed last June of

Scott Benner 3:03
22. For fun. Do that for Yeah, I

Jonathan 3:07
decided, you know, I love mountain biking. And I love eating and I wasn't losing enough weight. So I figured you know, I may as well just start taking vital organs out just to try to get in shape

Scott Benner 3:19
called a colectomy. Is that right? Yeah, well, exactly. Okay. So

Jonathan 3:24
I've been a type one diabetic for 30 years and just turned 4041 And I had been sick off and on for the better part of a decade. And what I mean by that is obviously just running to the bathroom. So I would I love running I love like I said mountain biking, cycling anything to get outside and get active. And so I noticed more and more I was running to the bathroom, you know it go two weeks where I'd be running three or four times a day. And I'd go to the doctor and they'd say, ha, you're you're stressed you're too high strung relax, you know, take it easy. And that progressed over the years to the height of going about 30 times a day. Oh, yeah, it was no life. I still managed somehow to to run sort of in between porta potties and it got to the point where Yeah, I just I didn't have a life I was incredibly sick ended up in the hospital actually was shingles. That was where things really went downhill. I ended up somehow with with with shingles, which then led to a diagnosis of sarcoidosis. sarcoidosis is rare,

Scott Benner 4:37
right Jonathan? That's the one that's the one they use on house when they don't know what else is happening. Did you really have 100%

Jonathan 4:45
I wanted I first of all, and I'll fast forward a little bit. All I want is a T shirt right? I want to undiagnosable t shirt or or something from Mayo Clinic that just shows like I'm part of a cool club that you know I'm I'm Dr. Houses undiagnosable

Scott Benner 5:01
I can quit making this podcast now.

Jonathan 5:04
I think you're good.

Scott Benner 5:06
I mean, I didn't know this was gonna happen. Actually, Jonathan, I swear to you, I feel terrible about this. I was so excited when you say.

Jonathan 5:17
So, I'm, I wish I was making this up. But I'm in. I'm, again, I'm jumping around here. But it all makes sense in the end, right? Sure. I'm in the emergency room. As I'm sick, they don't know what's going on. I've got shingles on my face. The doctors are convinced that I'm cheating on my wife, that I have an STD, which I don't really know much about STDs. But I was questioning how it all show up there. Long story. And when the sarcoidosis, diagnosis comes back, the doctor is literally holding a book, hearing around the book to look at me and then back to the book. And then back to me, and then back to the book. And he said, I've never seen anybody with sarcoid. I've only read about it.

Scott Benner 6:02
No kidding. Let's take a picture.

Jonathan 6:04
Right? I'm sitting right here. So can we talk about like, what do we do? Now?

Scott Benner 6:08
Let me let me ask you some questions, because I've already too many questions. Yeah, you're diagnosed that 11 with type one. Do you have any other autoimmune issues?

Jonathan 6:16
It depends on you know, it's the whole gluten thing. They go back and forth on interpreting that. So I've never officially been diagnosed on that front, but I do tend to avoid it. Just you know, again, stomach stuff, but no, no. Type One was was

Scott Benner 6:32
just about it. How about in your family? Any other type one? Autoimmune. Yeah. So

Jonathan 6:36
my my cousin, my mom's on my mom's side. He was diagnosed. Geez, maybe two, I want to say maybe even younger, maybe one. And then my, my nephew a couple years ago, my brother's son. So that that was rough. Obviously my cousin I wasn't, I was older. And he he felt bad for me. But my nephew being diagnosed that was that was a tough one that that hit me pretty hard for a while.

Scott Benner 7:03
So you go from 11 to wind, when does the bathroom thing happen? And I have questions about that, too. Like what age do you start finding yourself? Early? Early 20s are about 10 years. diabetes? Yeah, exactly. All right. When you talk about running to the bathroom, I'm so sorry. I'm gonna ask you this. But no, please. Open Book. You get it and you get in there. And yeah, it lasts for two seconds, five hours. How long have you there every time you sit down. So I would,

Jonathan 7:36
I would meet a friend. For a run every every Friday morning. This kind of summarizes my day, every Friday morning at six o'clock. Doesn't matter what the weather is you you're on the corner to run. And so I would wake up usually around four and use the bathroom until about 10 minutes before I would meet him. And it would just be a constant stream of water coming out of my my body. Okay,

Scott Benner 8:01
okay. So and

Jonathan 8:03
then after I got back, sometimes I need that. So that was a usually about an hour run. Right? So then at times I would have to stop during that and go about halfway or I'd get home and I would immediately Dart to the bathroom. Go again trying to get ready for work. Get to work go again. I mean, so it's any involve

Scott Benner 8:22
tell me something you wake up at four. And you're this is happening is a delusion liquid coming out. When was the last time you ate prior to that?

Jonathan 8:34
It would usually be gosh, you know, eight, nine o'clock the night before,

Scott Benner 8:39
okay, and now you're out for your run, but you get done. You have to go again. You weren't eating? What were you doing during the run? Just drinking or eating?

Jonathan 8:46
Nothing, nothing. And it just happened for you. And that's the thing. The only way I've always described it to people as being like a wrung out sponge. It just you felt dehydrated and tired all the time. It just felt like how there's just there's nothing left in my body. Yeah. How is this possible to continue doing

Scott Benner 9:08
minerals hydration, nutrition all that stuff must your body can't be picking it up quickly enough when it's coming out that fast I would have met

Jonathan 9:16
no and and the the kind of doctor houses of the world I was getting I've continued to gain weight, which they can't, they still don't grasp. Like why? Usually people in this condition we see our skin and bones and you're not you're just retaining this inflammation and that's where they started going was hanging on you. Your body is just so inflamed. Something else is going on that we don't quite understand.

Scott Benner 9:41
I used to hate ordering my daughter's diabetes supplies. I never had a good experience and it was frustrating. But it hasn't been that way for a while actually for about three years now. Because that's how long we've been using us med us med.com/juicebox or call 888721151 for us med is the number one distributor for FreeStyle Libre systems nationwide. They are the number one specialty distributor for Omni pod dash, the number one fastest growing tandem distributor nationwide, the number one rated distributor in Dexcom customer satisfaction surveys. They have served over 1 million people with diabetes since 1996. And they always provide 90 days worth of supplies and fast and free shipping. US med carries everything from insulin pumps, and diabetes testing supplies to the latest CGM like the libre three and Dexcom g7. They accepted Medicare nationwide and over 800 private insurers. Find out why us med has an A plus rating with the Better Business Bureau at us med.com/juicebox Or just call them at 888-721-1514 get started right now. And you'll be getting your supplies the same way we do. This episode of The Juicebox Podcast is sponsored by cozy Earth. And right now I'm looking at cozy earth.com to see what's going on. I got oh look at this bamboo pajama set for ladies. That jogger pants for ladies looks like plush lounge socks. That's one of Oprah's Favorite Things. There's the bath collection. We love the waffle towels, but there's also premium plush bath towels. Everything that you see here can be had for 40% off with the offer code juice box at checkout. Even the sheets, now we use the bamboo sheets, you may choose different linens, I don't know what you're going to love when you get to cozy earth.com. But we sleep on bamboo sheets from cozy Earth, they are incredibly comfortable. And I bought them myself with my own money. Using my own offer code. juice box at checkout 40% off is what I saved, you can as well at cozy earth.com. Okay, and so this was happening throughout the day, this is how long do you go to the doctor?

Jonathan 12:11
Very quickly, you know, I did not want that I knew something was wrong. And yet, so I had my first colonoscopy when I was 26. And again, it will go in, in in in spouts.

Scott Benner 12:27
I'm gonna say spark. So you stopped yourself, right?

Jonathan 12:29
I did, I did. So yeah, it would be two weeks of this, right? It would be three, whatever the case may be four days, and it will go away. And I go to the doctor. So they did a colonoscopy, everything looks fine, but maybe just stay away from gluten stay away from dairy, you know, make I have tried every single you name FODMAP diet, I've, you know, only eat beans, I did that, you know, jump up and down three times on a full moon did that. And it just continued getting progressively worse to where, you know, two weeks turned into a month turned into three months. And that's where finally I was referred to Mayo Clinic.

Scott Benner 13:12
Okay. Once somebody said we have literally no idea what's happening here.

Jonathan 13:16
So exactly with this, this doesn't make any any sense whatsoever,

Scott Benner 13:20
then what happens there that leads to because I'm trying to understand, because I don't understand this at all. How does having your colon removed? How is that helpful for this?

Jonathan 13:32
And how do you get the it's a great question and still in one that's hard to, to answer, especially as my family still has that question. And it doesn't, it doesn't fix sarcoid it doesn't stop anything other than running to the bathroom 30 times a day. So I leading up to you know, when we first met with mayo, the doctor was incredible. And said, I'm going to be very upfront with you. This is the trajectory right? So we're going to start with these sorts of experimental ideas that we have in our research. And then we're going to go to more traditional potentially infusion treatments. And then worst case scenario, which I hope isn't there is surgery. That's where the most extreme cases go. And we went through two years of experiments and infusion treatments. So I was going to a cancer infusion center every so often for several hours for an infusion, in hopes to slow that, you know, my immune system just going haywire. And so it got to the point where none of that was helping. None of it was adding up. So we did every test imaginable at Mayo and so they went in and did the final colonoscopy to take a look and they said you your colon is just so inflamed and so angry with not only colitis, lymphocytic colitis, but also granulomas, we can see we've tested it and you have sarcoid through about your colon, which is incredibly rare. So not only do I have this rare condition, but now I have another rare element on top of

Scott Benner 15:07
it. A lot of times they say that sarcoidosis could last for years and go away or it could exactly work could end in organ damage. So what So, is that you just set a timer in your head and go, I can't do this anymore?

Jonathan 15:22
Yes. 100% You're right. Okay, that's exactly what I did. It was impacting every aspect of my life, from family to you know, career to everything to I mean, the top thing for me was family and, and outdoors. Like I was carrying a shovel and biodegradable toilet paper, which I still do isn't my bag, but I carry it. I was carrying it on on runs in the woods, quite literally runs. And so many were, you know, bad puns.

Scott Benner 16:00
Don't worry, you you keep going. So you're, you're like out there like a cat burning your stuff?

Jonathan 16:06
Digging cattles? Yeah, I just couldn't I knew from a mental health perspective, if I wasn't moving in some fashion, that that would be more detrimental than than what sarcoid was doing to me. So I had to get out

Scott Benner 16:20
there. So then my next question, and I really don't know the answer to this. But once you have that surgery, what are the where does it go?

Jonathan 16:29
Yeah, so I had, as you mentioned, in the collective me, so I had my entire it's a I want to say 16, you got to be incredibly wrong on that. But it was it was a lot, it was a nine plus hour surgery. And they attached so they essentially took a piece of my small intestine and pulled that out through a hole in my stomach that they created just bottom of my stomach to the right of my belly button, as I'm facing it, and connected, an ostomy bag. So essentially, there's a piece of plastic, just like a pump site, really adhesive that goes around this little piece of intestine, which then you connect I, you can have a one piece bag or a two piece bag. But I have two pieces. So I have a piece of adhesive on my stomach. And then I have a bag that adheres to that. That he said that kind of locks on it. And anything that I eat then goes right into this bag.

Scott Benner 17:24
Okay, so it makes it it makes it to your stomach for digestion and for nutrition and all that stuff.

Jonathan 17:30
Yeah, and I it's it's not really you know, people oh my gosh, you poop in a bag it it's not. It's like I always say it's like half digested food because your small intestine only does so much. So it's not quite like what you think of like, Oh, he's got he's carrying around poop in his bag.

Scott Benner 17:48
I didn't think of that. But now that you're saying it, I'm imagining it. So yeah,

Jonathan 17:52
of course. You know, the the, I've found that the stereotype is that people that that have this medical bag, if you will, it's dirty. smells terrible. You're pooping into a bag. And it's there are some truth to it. But but for the most part, it's not as gross as the internet makes it out to be.

Scott Benner 18:18
You don't get any more of that like wash of just liquid running through you. That doesn't happen now.

Jonathan 18:23
Oh, no. So I did they removed not only obviously, my my colon, they removed my rectum because my rectum was was diseased as well. And so essentially, I they built like a small little not really a pouch, but they just just a small I don't know little space. And so that shut so they removed everything. And there's there's no connection. i It's a dead end because I like to joke in my kids.

Scott Benner 18:54
Wait, hold on a second. I can't take your temperature rectally. That's good question. Is there an entrance?

Jonathan 19:03
I don't know. I've got an entrance. Okay, it just doesn't go anywhere.

Scott Benner 19:08
Gotcha. It just was almost like a like, if you were transitioning the way they might create like a vagina. Like that. Like it's just there's like a space back there. But it ends. Yeah, yeah.

Jonathan 19:21
Okay, very quickly. So I Okay, I got it. Yeah, I always joke that I've got a no outlet or a dead end. Yeah. How

Scott Benner 19:27
about that? That's, that's Dude, that's insane. It really is. It's,

Jonathan 19:32
it's wild. I mean, it's, it's been over a year now. But I still have times where I wake up and I'm like, Holy, Holy, Holy crap. You know, this is the reality. I'm 41 years old and Blaine, you're staring at the airbag that I will have for the rest of my life. And yeah, there's certain times of sort of heaviness that goes along with that, but at the same time, it's afforded me a lot. It's still ahead Got a lot of work, but it's afforded me a lot of freedoms.

Scott Benner 20:02
Can you remove it for short periods? Or does it always have to be on.

Jonathan 20:06
So you know, you can completely so you have to do a bag change. And this is where the parallels to diabetes are there because every, every person is different. So you can't really go and get the playbook. So I changed my bag, usually about every two days. I know some folks that change it every week, they're able to keep the adhesive in the bag, sort of in good condition, I'm able to take a shower, and I take the bag off before the shower, clean, you know, clean myself off clean, the stoma, which is the piece of the small intestine that's kind of sticking out of my stomach and kind of wash that up and then put a new adhesive on put a new bag and, and ready to go.

Scott Benner 20:48
Yeah, see, I meant sexy time. But that was the good explanation for that. So like, can it come off for short periods of time for activities?

Jonathan 20:56
That's so sexy time? If that's that's one element that frustrates me within maybe it's just because of what people are able to communicate on the internet, because I wanted to understand, like, how does it all work? And everyone says, Oh, you just wear a belt? I'm like, well, nothing says sexy, like bopping out of the bathroom with a massive medical

Scott Benner 21:17
belt. A bag around your stomach with the belt? Yeah, get the lighting, right, this is gonna work.

Jonathan 21:27
Stand back your gums? Me That's all. Yeah, right, totally. And so yeah, that's where it is frustrating from an insulin pump. Obviously, you take that off, no big deal, the bag is there. And so that took me a long time. And I still struggle with it. It's, it's there, it makes noise. your stoma may make noise because you've got you you ate. And I'm very fortunate because, you know, I've known my wife, you know, our whole lives. And it started dating, we were 19. So I just feel for people that are dating or may not have a partner or whatever the case may be and they're having to navigate them. And I don't think there's enough conversation going on about, you know, the bag moving around, while you're having sex, the just addressing that it usually just comes with oh, just put a belt on and you're fine. There's a lot of underwear, like crotchless underwear that are made for women. I've approached as many companies as I can find, like, Hey, would you be interested in making men's underwear? I believe I'm probably they see me as just internet creepo. Now in hindsight, I could see like some random person messaging Hey,

Scott Benner 22:42
beer, sir. But, madam, I was wondering that.

Jonathan 22:46
Right. So but I've, I've talked to other people that that do make make garments, and I'm trying to come up with an idea of it just something that's, you know, it just it gets annoying. It's there. But

Scott Benner 23:03
how many? Are there? Is there data on how many people have had this done? Not

Jonathan 23:08
reliable data that I've seen. So I've it's different doctors saying and I don't know this is accurate, but they say about 1.8% of people with sarcoid end up with it in their colon?

Scott Benner 23:23
Okay. That's a very Yeah, just I mean, that's gotta be a small number of a small number, I would imagine,

Jonathan 23:28
truly, and my presentation of it is bizarre. And that's why, you know, to your point earlier about house I mean that it is it's, it's a disease of exclusion, and it's one that is not understood and mind showed up on my arms. Usually, if it's gonna show up in your skin, usually see it on your, what I've been told anyway on your shins, and I had large granulomas showing up, up and down my arms. And that's what led to the diagnosis. That's how they tested it and then finding it within my colon. It didn't go into my lungs right away, which is, again, bizarre to the doctors. I have scar tissue in my heart. So they believe while they didn't catch it, during the test that at some point, I had granulomas in my heart. And now it appears early signs are showing my liver as well. So it's continues to perplex a lot of people.

Scott Benner 24:27
What are the long term implications of that? Yeah, as

Jonathan 24:30
you as you as you talked about earlier, you know, the hope is that it goes away, I just restarted immune suppressant treatment. So we're hoping that that keeps it at bay. It's going to take about three months for the immune suppressant to work because we have to start with the the cheap stuff that insurance will cover your humera as of the world I feel like that's a very a lot of people have heard of humera so that is one that is an option. But you got to start with this one because as you You can appreciate insurance. Yeah. And they don't know. You know, it's, it's difficult for me in a sense, because yeah, you there's some medical professionals that say, Hey, you know, you had your colon removed bad luck, whatever the case may be, we think you're gonna be fine. That's good. Then you talk to another doctor that says, I don't like the fact that your, that your liver levels are doing what they're doing. I don't like the fact that we're starting to see the stark granulomas form there. And I think you have to have an understanding that we can only take so many organs out. And I have had a very difficult my, my body builds up immunities rather quickly to immune suppressant drugs, treatments, so humera, again, you name it. And that were I have an allergic reaction to them. So they said, you know, you do you kind of do the math on this, you're not responding to drugs, and this weird presentation keeps attacking different. And that's my word attacking keeps going into different organs. So that that gives me

Scott Benner 25:58
pause. Yeah, no, I mean, I'm reading now, while we're talking. It's fascinating, too, that you don't have other autoimmune diseases, but you have this one. So in case people are wondering, sarcoidosis is an autoimmune disease. Correct? Yeah. And there, there's like, the things I'm reading here, say, like looking, this could be something that goes away to something that just, like hits different internal organs. And, you know, it could kill you at some point, like, so like, there's any, like any version of like severity here. I mean, it's gotta be frustrating to say the very least, it

Jonathan 26:35
tremendous. Yeah. And it's frustrating, because, much like diabetes. Again, there's just so there really are a lot of parallels. Oh, my, you know, my uncle, you know, he had sarcoid. And he was fine after two years are like, Oh, that's wonderful. That's fantastic. Mine, Mine isn't quite like that. Yeah, my lungs, for instance, as I said, as I've mentioned many, many times, I'm just avid outside. And now my Well, it is not sarcoid. And this is the next puzzle piece, based on my last visit to Mayo, the spring. My, I kept telling them, I'm not breathing, right. I'm not, you know, something is off with my body. I'm not responding the way that I'd like to. And I was told well, it's fine. It's just you know, you're still recovering from surgery. But oh, so then I finally pushed enough that they did some, some tests, and a biopsy, and it came back chronic inflammation. So again, it's like, it's not sarcoid per se yet, or maybe it was at one point, but it is your your lungs are chronically inflamed. And my question is why? And they just shake their head.

Scott Benner 27:40
Nobody knows. Yeah. Well, listen. So for people who didn't understand my reference earlier, if you didn't watch the show, house, MD when it was first run, it was about this doctor in Princeton, right? Who took on the toughest cases, like he was one of those people who helped you diagnose things that nobody else could diagnose it, it was a running joke, wasn't it? It was a joke, I think, from the writers that at some point, they would either get to, like, you know, halfway through the episode, when they're all wringing their hands, and they don't know what it is. Someone would say. Could it be sarcoidosis, or lupus. Lupus was the other one that they would go through. Yeah. And then, and then by the end of the episode, it was never sarcoidosis. More importantly, if you Google, it's never S A R, it will autofill sarcoidosis, and take you to just different web old websites from back when house was first run, where people are like, Why did they always say it's sorry? Right? Yes, a running joke on house like, like, you know, it would happen constantly. So anytime the word comes up on the podcast, and it has a couple of times, I explained this thing and make this joke. And no lie. Like three days ago, I was telling my wife how it had come up on the podcast recently. And when you said you had it, I was like, that's not possible. People don't actually get it. They just, it's then I realized the difference between reality and television. But it really like you floored me for a second. And this explanation is fascinating. Like, I never understood, obviously, the depth of this. It's really interesting to hear about I'm sorry, you're telling it from a first person perspective. Let me try to make sure I understand you started with kinda like humera kind of like level drugs. When that doesn't work, then they'll push for something harder. And that should help the the insurance company say yes to is that kind of the path you're on there. Exactly.

Jonathan 29:32
Yeah. Much. Yes. And and so we started with with the free so I mean, I was drinking two bottles of Pepto Bismol a day. That was Mayo had had research studies that had the effects of Pepto so I I'm just

Scott Benner 29:49
pounding on inflammation. Wait, what was the Pepto for Jonathan? The

Jonathan 29:54
they had researched with at this point. All they thought they were treating I was colitis, how I say I see for the colitis, okay, so they had no and that's the amazing part. And all of this is and how sneaky sarcoid is, is that they had no idea and it was nothing that they did. It was just it was there and no one knew it. And so they thought they were just, quote simply treating colitis, it was a lot of experimental like, Hey, we've seen promising x let's try to and you're exactly right. So then it's let's start with the easier drugs to obtain let's get up to the infusions and either built up antibodies to it or I had an anaphylactic reaction to one of them that was relatively scary. So we got to the point where you know that we're like you said, we're at a crossroads of how much is to like, where do we draw the line? And I finally drew the line and said, beyond this, I can't do it anymore. This is, this is too much. Yeah.

Scott Benner 30:54
Have you had any therapy or like mental health help with it?

Jonathan 30:59
Yeah, I'm not i I'm open and talking about you know, we've we've had as a as we've had quite the adventure when it comes to health and not only my diabetes, we, we have three kids, which we're fortunate to have in between our second and third, we had three children last 22 weeks. And so that sort of started my mental health journey of I didn't even realize I needed help at that point, because I was struggling so much to deal with the pregnancy losses. And when I asked for help from a doctor, I was told, suck it up, your job is to help your wife right now your job isn't to sit around and complain about losing a child. So I took that as okay, just suck it up and keep moving. So I was walking around with what I thought was just playing, you know, depression. And that's how it was treated for a very long time, until I found a counselor about three years before my surgery that found out I in fact, you know, diagnosed me with PTSD. And so it completely changed the treatment and the approach. Because everyone just kept saying, Oh, you're depressed, you're depressed, take these pills. And it was like, I don't want to just take the pills. I want to do some work around this. Yeah, I see. A counselor on a regular basis to try to manage all of this, as you can appreciate diabetes in itself is kind of a full time job. And then all this other, all these other elements really weigh on the mentally

Scott Benner 32:29
Sure. Yeah. No, I mean, I can't see how they wouldn't. Do your kids show any autoimmune issues? Not

Jonathan 32:36
Yeah, I was one of your guests a couple episodes ago talking about, you know, if their child does something, they they check their blood sugar. And when we do that, you know, if one of the kids is like, gosh, I've been drinking water all day, I'm like, get over here. Let me check you so far, so good on all autoimmune fronts. And that was a hang up I had with kids, right? Like, I struggled with the concept. And my wife, I think, put it really well, if we will cross that bridge. If we ever get to a hover, we'll know how to help, we'll know how you'll understand how to help them. And that gave her peace of mind. And she told me that regularly so I felt comfortable, you know, having the kids? Yeah.

Scott Benner 33:21
Okay, how does all of this impact diabetes care,

Jonathan 33:26
the inflammation has been difficult. The insulin resistance, as you can imagine, goes higher and higher, the more inflamed my body gets. So that's certainly been a challenge to find any patterns. With that said to me, I'm fortunate in that my one sees have, through a lot of hard work, have stayed in the mid sixes throughout all of it. But it's, it's interesting, because I see patterns were, you know, my output as we call it, not pooping in the bag, but my output if, if I am feeling somewhat dehydrated, or my output, you know, I'm putting out more into the bag on on a daily basis than usual. I can certainly see a reflection and blood sugar. But yet again, there's I feel like there's not many of us. So when when I collaborate with my doctors on it, they kind of asked me questions more than

Scott Benner 34:21
they're like me, they're like, this is really interesting. That great, thanks. Appreciate

Jonathan 34:25
it. Oh, I can't tell you how many research studies I'm in every time I go to Mayo. It's like Hello. Hi. Um,

Scott Benner 34:34
I have a grad student here that wants to talk to you.

Jonathan 34:36
Oh, absolutely. Oh, gosh. Like yes.

Scott Benner 34:40
I imagine. You know, Dr.

Jonathan 34:41
schmucky. Duck from from Denmark is here. Oh my God bring them

Scott Benner 34:47
How about your, your choices of food? Like, is there a certain way to eat that's more valuable for you than others? Yeah,

Jonathan 34:55
so after surgery, they they recommend real heavy starchy white rice. Have lots of peanut butter, which I'm good with anything that will thicken up that output because the biggest, one of the largest challenges that you have is, is dehydration. And once somebody with an ostomy gets dehydrated, because your your colon is really responsible for the bulk majority of absorbing foods, you know, moisture content, essentially, yeah, so once you take that away, then your your small intestine needs to pick it up, but it can only do so much. It's only really designed to do so much so. So once you get dehydrated, it's it's usually a trip to the emergency room to get night. That's kind of it can go bad pretty fast. Okay,

Scott Benner 35:37
what's it like a regular day like though? What do you eat the day and of course of a day.

Jonathan 35:42
So it took me a while I stayed on that post surgery meal. So it was, like I said, the rice, heavy stuff like that, removing the skin off your apples anything because what you're trying to avoid is getting a blockage. And if anyone's had an intestinal blockage, you know how much I mean it is excruciating. I have one thankfully in the hospital, because my gut still hadn't woken up yet. So they were able to treat with obviously heavy pain meds and a lot of IVs. And that's the only way to treat the blockage for us. So I was feeling that pain, I was really reluctant to branch out and buy food until one of the nurses at Mayo was phenomenal and kind of gave me a pep talk of like you need to get back into, you know, eating the way you want to eat. So unfortunately, due to the sarcoid right now, my mouth has incredible sores and inflammation all through. So eating is really challenging. But if an optimal day, you know, breakfast is usually some type of oatmeal or eggs, and bananas, some type of fruit, back to eating salad again, which I love. So a lot of fruit, a lot of vegetables, lean meats, try to limit red meat just because of it's just I've noticed, you know, for my output and how I feel it's just harder on my digestive system. Yeah. So you know, a lot of fish, brown rice, things of that nature. So I'm back to to where I want to be. But the nurse was cracking up because she kind of again, gave me the pep talk. And then I saw her the next day. And she asked what I did. And I was like I went out and I got a salad and an apple with the skin on it. And she's like, Oh, you rebel.

Scott Benner 37:29
I'm crazy. I'm crazy. Do you supplement with anything, any supplementation that they've asked you to use? You

Jonathan 37:37
know, so vitamin D and B are the only two from all the blood work that I give that they've had me supplementing wealth, and I've wanted to research and study other elements a bit more, but I just I haven't. So those are the only two that you know, outside of a general vitamin that I'm supplementing with.

Scott Benner 37:56
Are there any benefits? Are you saving crazy money not buying toilet paper? Or during COVID? When everybody was looking for a paper, you're like, I don't care? I'm good. Yeah,

Jonathan 38:05
totally. You know, so when I empty the bag, I use a little bit of toilet paper just to clean out the sort of the bottom of the bag. So the bag has an adhesive roll. And if you look it up online, you're able to see it so it locks in place. And there is absolutely no smell in the bag whatsoever when it's locked and closed. Now obviously when you open it and empty it depending on how long it's been since you've emptied it last there's there's a little bit of smell. But nothing. I find nothing horrible. But it's so yeah, I'll use a little toilet paper to clean that up. But yeah, with three kids, you know? Yeah, I'd like to say we've saved money, but probably not. 36

Scott Benner 38:47
minutes into this. I've sat on no pun, I've sat on this question as long as I can. Okay, really did mean, I think they're about by that point. I mean, so, do you have to like throw a Q tip in the butthole once in a while or rinse it out? Or something? Or oh,

Jonathan 39:05
that's a great, no, it's a great question because and then now with the I'm getting a little bit of it's a clear, I don't know how even how to describe it like a clear mucus that is present every now and again. And I'll have to wipe that and I can feel it like it just feels odd. And that's one thing that they they are studying a little bit just because I guess it can have mines happening more frequently. So they they recently went I was fortunate I was able to go locally to do it. They just went in with us, you know, a small camera just to take a look and figure out and they can see colitis all in the little surgical pouch. Really? Yes, super angry. Super inflamed. That's so Oh,

Scott Benner 39:49
I'm gonna curse that's crazy. So what's the pouch made out of?

Jonathan 39:54
So it's the remaining skin that was there and I'm sure there's the you know a surgeon listening right now. Alec's throwing themselves. You know, like that's not accurate. But as

Scott Benner 40:02
you get to say their opinion, so what? Why don't we replace it with like a real thick water balloon or something? I don't want to like, I obviously don't know a lot about health and medicine, but like, couldn't it be something? That's not your? You know what I'm saying? Like, because Oh, yeah, no,

Jonathan 40:20
the way it was explained to me is that it is the safest route to go to essentially. So you have two options. And that's the other part that totally messes with you, right is once you decide, okay, you know, what I'm going, we're going to do this, you meet with the surgical team, and they outline your options, which are one, what I did, which was complete removal, and no expectation of a reversal. And what a reversal is, is is a two part surgery, it's called a J pouch. So essentially, what they do is surgery one, they go in and remove your colon, colon, and then they give you a temporary ileostomy, they build a pouch out of your small intestine that essentially acts as your new colon. And that is able to hold waste. And just like your calling does just, it's obviously it's smaller, not designed to do that. So it's not quite as foolproof. So then you go back for a second surgery, and they remove the temporary ostomy and connect you fully. So they connect to the J pouch to your but you're good to go. Obviously, there's a little bit of recovery on a lot of recovery. It's a tough surgery. And then you're, you know, eating, drinking, living as you would you go to the bathroom, you sit on the toilet, it's a little softer. It's sometimes people have a difficult time with their muscular control. So you can have accidents with my diabetes, my recovery not great. We decided the first option was the best for us. Okay.

Scott Benner 41:57
I mean, listen, I it's not a well traveled road to begin with as far as like experience not like you can ask a ton of people what they think right? So you're totally, you're a little left with what the doctor tells you and what sounds the most agreeable to you, I would imagine.

Jonathan 42:13
Yeah, what fits your lifestyle within you know, there's there's certain people I've met that said, you know, the J pouch was was right for them. And thankfully, they've had no no issues, you know, the, you see a lot of they call it J pouch itis that gets infected or inflamed. And get again, just given my health history for us. It just didn't make sense to go through. The surgery was wicked. I have vague recollections of the week that I was in the hospital. But the ones that I do it was it was tough. And I remember laying there thinking like, is this, this is how I go out, like I was in so much pain, based on how my body was not reacting, right. My bow wasn't waking up, couldn't use the bathroom, I couldn't pay. So they were having to come in. And every time I had to pee and help me with that. So I was just, it was rough. And I was seriously thinking like, this is how I die like this is how I can't believe like this is it I was trying to do the surgery to help myself helped my family and this is how I go out and thankfully I got through that part and was able to excuse me able to

Scott Benner 43:25
recover and congratulations on that. Not using the term it kicked my sweetie describe the surgery. I thought that was because you had made a couple of bad puns so easily. I missed it. there and you just sort of left to go, but that's fine. I'll get another I'm trying to talk myself. Like out of like, I have to say something. So I don't keep thinking about it because I want to I want to say rectum. Like wrecked our W reck. Yeah. I'm looking for that on somewhere and I can't find my thought process while we were talking so far.

Jonathan 44:00
Well, I mean, we we had a two party a farewell poop party. My wife and kids got poop emoji balloons and put them all over the house. We I mean, we had neighbors big barbecue all to salute my colon. Goodbye. So we're, we're good with the humor. We need it.

Scott Benner 44:19
I do have a serious question. Like going to the bathroom takes up a fair amount of your life. Right, like sleeping. You know, like sometimes you'll resent having to sleep. I don't know if that happens to other people. Right? But just like I have things to do when things I'd like to experience. I wish I didn't have to sleep. Yeah, I know the rest of it must be so bad. It can't possibly balance it out. But is it kind of cool not to have to do it anymore. Is there anything good about it? Or would you wish you could just sit down and like, you know what I mean?

Jonathan 44:47
No, it's our her son. After we explained to him what was going to happen. He said that you can just play video games all day and never poof you can just never, like, not exist, how old

Scott Benner 45:03
is your son? I just want to rate where my thought process is. He's he's not. Okay. I'm 52. And it's what I wondered. So don't judge him or judge me. I don't know which way you're gonna go.

Jonathan 45:14
I thought I thought it was pricey. I cracked me up. No, I wouldn't. It was the right decision based on the information that we had at the time. And that's, that's a sort of a big thing, again, as you can appreciate with with management of a chronic illness is, you know, my wife, and I always just remind each other more. So she reminds me, which is we, we made the best decision we could with the information we have. And so after, I will say, after getting the pathology report, it felt better. Because I felt as though I was sort of making a selfish decision. The I was taking sort of a quote, easy way out by electing to have the surgery because it was I made the choice.

Scott Benner 46:02
And I gotta tell you, that does not strike me as the easy way out. But okay, yeah,

Jonathan 46:06
yeah, no, it was a weird, it was a strange time, mentally, and getting the pathology report and I read it. And I asked one of the other doctors said, based on what I'm reading here, my column was bad. And they said your colon was F. And it was a matter of time before you you had it done in an emergency setting. So you made the right choice. And that

Scott Benner 46:32
felt that's what you meant about once they were able to run that colon and look at the pathology of it. They were this was going bad one way or the other. You just kind of got out of it a little bit.

Jonathan 46:41
Exactly. And okay, once that doctor walked me through what a emergency removal looks like, like, Okay, this was a good

Scott Benner 46:51
Yeah, good. Okay. Okay, great. So how do you manage your diabetes? Use a pump a CGM? What do you do? Yeah,

Jonathan 46:57
I were, I saw I use Dexcom. And tandem, I love the data, I manage my blood sugar through Excel forever, because I had my own crazy way of sort of looking at trends and doing all sorts of stuff. So having now at my fingertips is sometimes a little overwhelming and pretty, pretty great. But yeah, that's what I use.

Scott Benner 47:18
Okay, using control IQ, or just manual. Yeah,

Jonathan 47:22
yeah, control IQ. So I was a long time that product and no offense to any of the Medtronic users or lovers or anything else, because I was one of them. After my surgery actually is and talking to my nephew, I wore Dexcom very early on, and some clinical trials just didn't work very well for me during activity, and I just never went back. And once I saw sort of what was happening, I talked now my endocrinologist is type one. That's when he uses and he kind of just let me figure it out on my own. But I think outside of exercise mode, that's the only issue that I have. With with on the tandem side. I think it's still too aggressive. I have to set a Temp Basal. But I think, for me, the control IQ has been the best. Are you?

Scott Benner 48:10
Are you not getting some impacts? Because your food is skipping that? That large intestine? Because there's some absorption happening now?

Jonathan 48:20
Oh, absolutely. Yeah, yes. 100%. Yeah, it's I don't know what the percentage is. But it is certainly been a new learning curve of how quickly food hits me. And I, I mean, you don't seem like you'd be offended by this. But there's times I won't tell my wife which foods because I don't want to ruin it for her. But I can tell how quickly I mean, if I see them, I can actually see the food in my bag. Certain foods, if I don't chew it well enough. Or if it's just a food that is difficult to digest. It's coming out of my bag. We don't

Scott Benner 48:53
talk enough around diabetes about like digestion, it's not spoken about, I think with the weight that it carries in the process, right? Like we all everything's just thought of from the side of the of the insulin like almost like everything else is invisible and unknowable. And you're just trying to combat carbs with insulin, when understanding how these things are absorbed by your body and how that continues to impact your blood sugar or how that slows down digestion. So you see a rise, I don't know, an hour and a half after you the French fry and you think What's that from? It's because the fries have been just sitting there not being digested. Now all the sudden, they're being absorbed and you're getting the impact from the carbs. Beyond the time you imagine that they would happen like it's nobody talks about it like that. I guess it feels random and unknowable, but it's really not. And I think digestion should be discussed more, at least to the level where people could understand, like that small part of the concept. I think it's important to have Actually, I'm making a presentation like on my other, like, I'm looking over to different computer right now, for a talk I'm giving next month. And I just added that recently to like, let me give a couple of minutes to this here to make sure people understand this part of it. No,

Jonathan 50:14
you're you're right. And it's, I think it's a, it's a frustration point for many people, which I can appreciate. But no, I completely agree with you from from a diabetes education perspective, it's kind of glossed over. And you can really, I think, fine tune. Now again, it's it's trying to find the patterns trying to understand if I eat peanut butter here and don't eat an apple or I do, like, what does that do? And I, I think if you're able to have the time and that science brain or sit down and figure it out, it certainly helps. But it is it's a ton of work. And now it's sort of sorry,

Scott Benner 50:53
I was just gonna say that, I think that at the very least, it can feel like someone comes up behind you and shoves you. And when you turn around, no one's there. So like, you know, at least understanding that you're not crazy, and the RBN shot from behind, you know, like, even that would just be helpful. Like, maybe you don't get to understand every impact of every bite of food and the different timelines, they're going to impact you on. But at least if you know what's going to happen, then when your blood sugar starts going up, it doesn't feel so random. At you know, like after, yes, that's all I'm saying,

Jonathan 51:28
you know, in in that you're not crazy, and that you and I realized that I came up at a different time. And I hope this isn't the case anymore. But it was always when I was a kid. It was like, What did you do wrong? Yeah, that was the mentality from the medical community, at least that I saw at the time, which was your blood sugar was actually like, oh, you cheating? What did you do wrong? And and I really started to value myself through my numbers. So you know, my blood sugar was high. It was because I was a crappy kid. Like, that's what I started to think, was that I was not it wasn't that I was 14 and growing. And, you know, it was that I, I screwed it up. And I think there's just so many unknowns there with diabetes, and how, like, I always tell people, it's like, you know, the sun could be in a different direction. You know, the heat could do something like, you know, I had a friend asked me, why don't you just do the same thing for each mountain bike ride? Like, Well, I do vary? I, I do. But I could have been stressed out. I may not have slept a lot last night, I might be, you know, I may have had an extra whatever the case may be cup of coffee, like it's the variables are there. So I think that's hard for some people to accept. I know it was for me at least.

Scott Benner 52:39
And again, I guess it just at least if you understood that that was happening, it wouldn't seem random. And then you wouldn't have people just, again, randomly assigning blame to things because they don't understand what's really happening. Like, let me just let me just know that somebody snuck up behind me and shoved me and I don't see that when I turn around. At least I'm at least I know I didn't do something wrong.

Jonathan 53:01
Well, yeah. Yeah. And and I don't what I looking again, like looking back, you know, I think it's also lost, like, feeling 300 is not great. Like nobody wants to walk around that way. It's just not a good feeling. So that's kind of what I always tried to remind medical folks like, if I want to fit, you know, I want to be in target. Let's just I'm confused as to why this is happening. Having high blood sugar just doesn't feel good. I'm not doing this on purpose.

Scott Benner 53:30
You said you started a nonprofit for this. Yes. That about?

Jonathan 53:36
Yeah. So my, my wife and I had sort of toyed around a lot with a nonprofit over the years. And we just didn't really know in what, you know, what theme and so I came back from Rochester, Minnesota from my surgery, came back to Montana. And obviously being in a rural area, I asked our hospital could you give, can you connect me with other ostomy? Folks? Do you know any other ostomy type one diabetics out there. And I was essentially laughed at. So I actually had a session with my counselor, I usually run to my counseling sessions, because it helps me sort of digest everything mentally. So I'm running home. And it was something that Tara and I and my wife had talked about something my counselor said, we need to start a nonprofit. If the support isn't here in town than it has, then we need to build it ourselves because I can't be the only one that needs help with a chronic illness. So evergreen adventures was sort of born from that. So we started it in one to connect the local community with each other from a chronic illness perspective. So I don't really care. I can't tell you I don't know if you've experienced this people come up to me and they're like, you know, I don't have it nearly as bad as you, you know, nearly as bad as your child or the case may be and I I'm not here You're to rate chronic illnesses, there's no scale, I want to help folks with chronic illnesses get outside in a safe and fun manner. That's really where evergreen has played we, we started a gear loan program. So if you're either a local in Montana or you're coming into the state to go to Yellowstone, or any of our amazing outdoor adventures, you can rent or I'm sorry, not rent, but borrow gear from us. So Big, Big Agnes, major outdoor company donated packs to us. We have loaner bear spray that we offer people, so they're safe out there. And I've been doing a lot of writing and outreach just to try to connect myself outside of Montana with other folks with chronic illnesses, but also just write about my experiences in the outdoors. With diabetes. In a poop bag. It's

Scott Benner 55:56
eg adventures.org. Right? Correct. Good. Okay. Thank you. No, thank you. I appreciate it. It's nice of you to try to help other people. It really is.

Jonathan 56:06
I hope. I hope so. Yeah, that's what's the hardest

Scott Benner 56:09
part about helping them? Is it reaching them? Is it like? Yeah,

Jonathan 56:13
I think it's, it's, it's the reach, as you you can appreciate, now I have a public relations and a communications background. So this was somewhat defeating, I think social media is is a is a beast, obviously in itself. So it was frustrating to or is frustrating to try to have a voice in that arena. So I decided to go back to the 1990s and start blogging again, because one I enjoy writing. So it was cathartic for me. But two, I just thought, if we can help one person, if there's one person out there that is either, you know, managing diabetes or preparing to go through a surgery like mine, we might have some information that could help them right. And from the caregiver side. Like from your perspective, I can't imagine now, as a father, I can appreciate, you know, what my parents went through a little bit more. But from my wife's perspective, you know, for nine plus hours, during my surgery, she sat in an Airbnb and did puzzles, to try to keep her mind. And she's the one that has to sit here every day. And quite frankly, as she said, the other nights see me in pain, because of everything that I'm going through, you know, having my colon removed, as you alluded to didn't fix the problem. I'm still managing sarcoid sarcoid is still hurting me, and really making life challenging, but I am stubborn to want to get out there and keep pursuing all these different adventures with my family and with other members of the community. But she needs support as well. Yeah.

Scott Benner 57:47
How do you do that, though? I just interviewed somebody the other day, who is I don't want to give a lot of their details away. But but their child is struggling, like really heartily trying to accept their diabetes. And, and it leads down some really dark roads. And I'm wondering how you're, you're staying? Well lit, I guess. How are you avoiding the shadows? It's

Jonathan 58:13
a it's a great. It's a great question. I think everybody does it at their own pace. My, this was purely by accident, my I played college soccer for a little while and my roommate on the soccer team was type one. And he didn't want anyone to know and got really, really ticked at me when I mentioned it to somebody, I had no issue sharing, he was far more closed off for that. And eventually he adjusted, but it just wasn't his time. Like he was still managing it internally. And he had a great support system around him to manage that. So I think part for me anyway, part one is having somebody to talk to whether that's a parent, a friend, someone, and then part two is is as a caregiver, allowing that person to sort of evolve it at their own pace, if that makes sense. And not rushing it to say, you know, like, you just have diabetes, it's okay. I think technology has been obviously incredible. But it's also, to me, at least, made it seem as though diabetes is easy to some outside observers that while you have an insulin pump, so it's no big deal. Yeah, it's still a full time job. It's still a lot to manage as an individual. So I would encourage kids and, and others to one not measure yourself by your numbers. Numbers don't dictate who you are, what you're doing as a person and to finding somebody that you can talk to I have a buddy now that I ride with most Fridays and mountain bike with and he's much faster than me, but he He takes a dials back every Friday and we ride together and just chat about anything and everything, it is very much a mental health ride. So finding something that offers you that sauce you might be reading might be writing whatever the case may be. But for me, it's been obviously running and outdoor activities,

Scott Benner 1:00:17
trying to strike the balance, I guess this is how I should start my thought trying to strike the balance between not judging yourself by numbers, and realizing that those numbers are helping you stay healthy. Yeah, that's the That, to me is, that's where the magic is right? And they give, you can make those two things work, you're on your way, because when you hear it go one way or the other, it's either, well, I didn't want to judge myself by the number. So I ignored them. But then I had all kinds of problems, or I made myself mental, and like, but hey, my one sees like, five. And, you know, like, like the balance in there. That's the, that's the sweet spot. And that whatever that balance is, is going to be different for different people, because some people are going to be more party. On the resilience side, some people are going to be more, you know, in need of more grace, like you don't I mean, like, you have to figure out who you are in that space and put yourself in that lane. And you don't get the freedom to do that. If everything that's being told to you, is so black and white. And, you know, I just You mentioned that at the beginning of what you were saying that I think it's just very important to figure out what works for you and not to rush it, it might take you some time to figure that out. Yeah,

Jonathan 1:01:31
and who you are, this may sound cheesy, but who you are as a diabetic who you are as a caregiver. And, you know, for for my wife, when I first when she was able to get the Dexcom app. She said, I don't need to look if you don't want me to. And I felt so good having somebody else being able to see my numbers. It felt like such huge weight off my shoulders. I was like, no, please, let's download the app. And, you know, so now, if she knows I'm out of the house, she'll text me like you doing okay? She sees me dropping or whatever the case may be, and then she'll apologize later. And so I can tell her like, it makes me feel great. It makes me realize that I gotta remember. I'm not alone, that you're here for me. And but I didn't. I mean, gosh, that took forever. It took a long time to get there. And it's again, like,

Scott Benner 1:02:25
I'm sorry, has she ever told you what makes her feel like she needs to apologize?

Jonathan 1:02:30
I think. So how she's explained it to me is that she doesn't want to be overbearing, he doesn't want to be overly protective. And she doesn't want me to feel as though I'm peering over her. Shoulder.

Scott Benner 1:02:44
Okay, which is she like that otherwise? Is there a reason for you know, that's what you see. Isn't that interesting? People who aren't like that are worried like, oh, I don't want you to see me this way. Meanwhile, she's not doing it. Right.

Jonathan 1:02:55
She's the most easygoing and fun, but I mean, we've got three kids, two dogs. Arabba, a cat, you know, we've got a busy household and she's unflappable. But she also kept we've realized over the years, he's also kept a lot of scary as, again as, as a caregiver. I can't imagine what it's like I couldn't. I know when my wife was was was going through hospital stays, it was gut wrenching for me. So to have me now on a regular basis, every few months, I'm going back to Rochester for a period of time to be monitored. And we're kind of questioning Okay, where is it now? That has to be really brutal. So not only identifying who you are, how you are as a diabetic and allowing yourself to sort of find that identity and having a support system to do that. But then also, as a caregiver, the same thing goes like, what's your caregiving style going to be? And I think it's a two way street between and I'm curious as a parent, how that works. But it's sort of expectations on both sides, if that makes sense. Like what you need from each other. Yeah,

Scott Benner 1:04:08
also, by the way, we're ignoring the fact that you are flying somewhere to get your care to it's not like it's you know, yeah, not like it's up the street from your house. Now, I does insurance cover the travel?

Jonathan 1:04:21
No, no, that's been an individual that I think meant well, once told me Well, you're fortunate that you had the money to fly. We racked up 20 roof $24,000 of credit card debt in travel in one year alone. And I'm not flying like you know, private here.

Scott Benner 1:04:42
You know, take it just just a little charter jet for yourself. Yeah, right.

Jonathan 1:04:47
And so it's like, yeah, we we hit my personal catastrophic Max each year. We keep getting we got another one yesterday, actually. Insurance company saying like, do you have secondary surance because you know your that your

Scott Benner 1:05:01
bill, somebody besides us anybody? Have you considered? Yeah,

Jonathan 1:05:06
right. It's yeah. And, and there's, yeah, there's times where we've talked about it. Do we need to move it? Do we why do we need to move to a hub? Do we need to? And the answer is no. Because I wouldn't change. It's not like I'm going every every other day, right. And the treatment wouldn't really change. And so, but it's been a serious conversation, which is tough to have. Yeah, of do. We need to completely uproot everyone because of my health.

Scott Benner 1:05:35
Right now. I just, I wanted to bring it up. Because, to me, it seemed like a major impact that just isn't gonna get talked about, you know, I know I talking all the time, like, I got to drive an hour to get through a good Endo. I'm like, You're, you just said Rochester and Montana. And I, and Rochester sounds like it's in New York to me. And it does to everybody else. Yeah, yeah. And so I flashed back to when someone invited me to come to Montana to speak recently. And I was like, No, cool. I said, Hell, there's like, it was like three planes and a day of travel to get there. Yeah. And I was like, Can I do it on Zoom? You know, like, like, what do you like, they're like, it's beautiful here. And I'm like, I can't stay. Like, I mean, if I was coming for a week, that'd be great. But it was literally three planes. And then a significant car ride. And, and 24 hours of traveling, I'm like, I can't I don't want to do that. Like, I guess I could, but I don't want to. And it would also mess me up for my entire like, it would probably screw up 10 days of my life, as far as making the podcast goes to because I'd have to get a bunch done ahead of time, just so I could travel so that when I got back, I was ready. I wouldn't be recording during that time. Like there was a lot of reasons why I couldn't do it. But then I'm just thinking of you going back and forth for your, for your medical treatment. But yeah,

Jonathan 1:06:54
I was on disability. And I've left my career was a consultant for the federal government. And that I have found that, yeah, I left my job last year. Last year, gosh, only feels like last year, but I last year, obviously I was on disability. And then subsequently, I returned to work for a period of time, and I couldn't do it anymore. I couldn't hang mentally, physically. It was it was too much. So I ended up having to leave and that going from a dual income to a single income is intense, to say the least and now trying to fit that reality. And that's another piece that within the Evergreen within the nonprofit side that I have conversations with, with people in town and elsewhere is people are having to make decisions, right? People are having insulin, while the rates may have dropped and should have dropped years and years ago. Everything's still cost money. And people are strapped when it comes to you know, affordable housing and food and everything. It's it's it all is connected. And I think that's lost a lot of the time, you know, that person doesn't take care of themselves. Well, do you know the whole extent? Maybe they're on eight, maybe they're having to make decisions on what they can do and what they can't do, which is

Scott Benner 1:08:14
you're a young guy who you're on disability, right?

Jonathan 1:08:17
I am now going through the process of applying. Now, obviously, sarcoid is not listed. As you can appreciate those

Scott Benner 1:08:26
people. Jonathan, if they did, it would have been on the top of the list, right? We'll never have to cover this. No one actually has it.

Jonathan 1:08:35
And so I'm the I can't I've stopped making the joke because the doctors just stare at me and I'm like, come on house. Nothing.

Scott Benner 1:08:44
I was you went to med school. I was there. I saw it all. They might have been well, you you. They might be busy learning about medicine while I was just watching it on television, in fairness. Yeah,

Jonathan 1:08:54
well, fair enough. But you should still have it. I mean, it's so yeah, I'm going I'm going through that lengthy process and painful process and then trying to justify and trying to explain it is it's challenging.

Scott Benner 1:09:06
Well, and then my, my next thought is, it's a loss of self No, like, part of what who you are I don't care what people say part of what you do is who you are. Part of who you are, is what you do, excuse me. And if you just take it from somebody and not being able to put money in the pot to I think is hard. Right? It's a

Jonathan 1:09:26
yes, yeah. And I said to my wife the other night I was like I said he or she stayed home for a period of time, obviously with the kids. And I say you you everything just seemed really well and flowing. I suck at this job. Like the kids are. I think the kids will want to go back to summer camp because dad's just not a good time. I'm still trying to figure out like, because there's days the other day I was in so much and I'm wanting joint pain and that goes along with the SARC was sarcoid and everything else and and just overall my It hurts so bad. It felt like somebody had a blowtorch in my mouth throughout the entire day. And so, when my wife got off work, I slept for three hours. Okay. And so there's that reality too, and, and whether you have diabetes wherever the case may be having those conversations with your kids, so they had that doesn't feel great right now. So I can't go to play baseball. I can't go mountain biking with you. I have to go asleep. That's hard. Yeah.

Scott Benner 1:10:26
No, I can't imagine actually. If somebody is listening to this, they're like, I think I have sarcoidosis. First of all, you probably don't. But if you think how do you? How do you get it diagnosed? And that's

Jonathan 1:10:38
the hard part. It's a, it as I said earlier, it's it's a diagnosis of exclusion. So it's essentially a you've, you've run every test imaginable. Sometimes you get lucky like I did, and you're able to see it on your skin, and they're able to biopsy and find that it actually is, in fact, sarcoid, because that's the other part is that when you say of sarcoid, if you I knew doctors that I mean, don't believe me, I'm like, go back into my records and read it. They're like, No, there's no way you have sarcoid you're just making that up.

Scott Benner 1:11:06
Like when people like, tell people you don't have lupus isn't real or whatever, like that kind of stuff. Yeah, you don't have exactly like that. Yes. Right. Right. Yeah.

Jonathan 1:11:17
No, very true. So I think one, it's, and again, this is difficult, but I, I had a primary care and a wound care center that believed me. That's the only reason I got to the diagnosis that I did, was they knew and they trusted me, and they knew that something was off. So they did not stop, they kept pushing and pushing. And then once again, once the granulomas showed up on my skin, they're allowed to do the biopsy. So my advice is if if one if you think you have it, hopefully have an open conversation with your care team. And as difficult as it is, Don't stop. Keep pushing the same thing with, you know, my lungs as an example. I thankfully had a doctor that believed me that said, well, we don't see sarcoid there. And but I told him, I said, I know, but there's something else going on with my lungs. So find a care team that you trust, one that you can collaborate with, and push. And just don't stop and try your hardest not to be discouraged. Because every doctor will tell you, you don't have it, and you're making it up. But if, if you feel like it's present, then you you're gonna have to be your best advocate.

Scott Benner 1:12:26
Yeah. You just need to keep pushing.

Jonathan 1:12:28
Yeah, yeah. And that's and educate yourself. That's the other part. Right? Read as much reliable

Scott Benner 1:12:37
sources. Yeah. What is that, like NIH articles like the Jeff to go that far to figure it out?

Jonathan 1:12:42
I did. So I've read a lot of NIH, I've read I trust, you know, Cleveland, and mayo. And I know the money, you know, they always say follow the money. And I know the money goes, goes there from different drugs and everything else. However, I do have confidence in those two institutions. So I read a lot of articles and different studies from them. Before you start, I've got an encyclopedia that I use to try to figure out, you know, different terms, whatever the case may be. But research studies anything by NAA, NIH, not just you know, you name it social media, and you know, cousin Eddie,

Scott Benner 1:13:19
yeah, no, I have to tell you, I mean, I've said it on here a number of times, but my son had, he was on his way to being diagnosed with everything except Hashimotos, which is what he had, because his symptom was just so uncommon, right. And it's, that's how we figured it out. Like, I just, I was online, reading, reading, like, like, you know, when people say I was reading in, they weren't, you know, like, I was, like, I was like, like, they're like, I've done research and like, 20 minutes, it's a pretty long article, you gotta read that quick. Like, I was digging through NIH articles about hives. And just, I hit it, I was like, Oh, my God, this is it. But then even once I had it, like, if you don't have a good doctor to go to now you have the information, and that doesn't matter. Anyway. So you know, luckily, we had a good endocrinologist that was already helping my wife and my daughter with their thyroid stuff. So I was able to go right to her and say, hey, look, I know, this is crazy. But look at this NIH article, look at what's happening to him. Can we just try the medication for this? And she was like, Yeah, let's go like, right away. Right. And, and I think she even gave me samples to get started with before like, so we didn't even have to wait that long. And if we don't find that one thing, the path they were heading him down was a not going to help and B had nothing to do with what was actually happening to him. So it's hard. You gotta you gotta throw yourself into it. You know? You

Jonathan 1:14:48
do I mean, I there's a there's a patient library at Mayo. And so my my mentality is when I'm there, I'm going to take advantage of every resource available to me, I will I mean I've sat in waiting rooms for a full entire day waiting for a certain specialist, I will find doctors on their lunch break. So maybe my, I don't know, maybe I'm listed as you know, a questionable patient. But I, they told me about their their patient library. So I went in it was just sort of like pamphlets. It was a nice library. But I said, No, no, I want the library like how can I? So I had to swindle my way and get access to the medical school library, which I probably shouldn't be talking about. But yeah,

Scott Benner 1:15:31
whatever. It all worked out. You're fine. Nobody's gonna get in trouble. Jonathan, is there anything we haven't talked about that we should have? Did I skip anything?

Jonathan 1:15:39
No, I, you know, at the end of the day, and it's a it's a complicated story. It's a complicated sort of disease experience. But from a pure diabetes perspective, I think I just wanted to retouch on the fact that, obviously, everyone is unique. Everyone has their own approach. And I think from a caregiver perspective, from a fellow patient, I just want to hear and and sort of collaborate and share what I've experienced in hopes, again, that it helps one person or one person can help me. I was able to be with my nephew a couple of weeks ago, who's type one, as I mentioned, and I was asking him questions. I don't I don't know everything. I haven't experienced everything, we can certainly take a lot from each other. And I'm grateful for the community that you've built. And I think it's incredible to see. And that's really my aim with Evergreen is I want to provide information with no judgment and a safe place.

Scott Benner 1:16:42
Well, man, that's it's a valuable wellworth thing to do. It's hard. Like you were saying earlier, it's making something so that people can find it is, I mean, you can say it's a lot of hard work, but sometimes I don't even know how it actually happens. I truly, yeah, yeah, there's so much randomness in what works and what doesn't. That it? I don't know. It's hard to quantify. It really is. There are times I think, like, I don't know, like, why is this podcast? I mean, this podcast is the most popular diabetes podcast in the world by leaps and bounds. And if you told me, I had to tell you why. And if I was wrong, you'd like throw me off a mountain, I'd probably just jump off the mountain because they'd be like, I don't really know. You know, like, I mean, I can guess I know what I think I'm doing right. But I, in the end, I don't know, I have no idea. Why just one video blow up and another one doesn't like, Have you never, like looked at a video thought That's hilarious. And it's got eight views. And you think that's not like why? You know, like, why that one? Not that one. It's just, it's it's tough, man. But it's wrong. It's

Jonathan 1:17:53
the relatability honestly, and I couldn't obviously I don't, I wouldn't be able to guess why one blows up over the other. But what I will stay in what I'm after is that relatability because as a caregiver, as a parent, you know, what it feels like to have a child with a chronic illness and helping manage that there's other 1000s of other caregivers out there that may not be in your same boat, but they can relate to maybe not sleeping great, because you're worried about your child, I can relate to others that get low right before a test at school, or maybe get wrote low right before a race. And it's frustrating things like that. So I think that relatability is is invaluable. And that's what you're doing. You're providing a platform. Wow.

Scott Benner 1:18:36
Yeah. But still, you know what I'm saying? Like, it's like, No, I totally did this information, because it doesn't make any sense. Right? It can be rock solid, and nobody can be listening to it. And I yeah, I don't know how that, like, that's just I don't,

Jonathan 1:18:50
I don't get it doesn't know. And then you see something that's totally outside of your wheelhouse. But like something that's totally ridiculous. And it's, you know, blows up. I put all this thought and time and effort into putting quality information together, and then this person eats a gallon of mayonnaise.

Scott Benner 1:19:12
43 million people have seen it. You're like, yeah,

Jonathan 1:19:14
exactly. And it's like, I'm over here trying to help ya know, that that that has come to my mind a lot. That's been a conversation in our house quite a bit. And I, I would be I do want to just I don't know, I'm taking up a lot of your time here. But I wanted to say my, my dream, my end. My wife keeps reminding me I said when I first when we got together and said we need to start a nonprofit and she was like, hey, you know, you have a lot going on. We now's maybe let's do it later on. Let's think through it. I was like, No, we had a 501 C three within four months. I raced through the paperwork, I wanted it, I still want it. And the reason I want it is again that one person she keeps reminding me all you said was you wanted to try to help one person but my dream is is much like you were mentioning and getting to Montana isn't always easy. But I hope to host some form of either both a kid's retreat and or adult retreat of outdoor conductivity. You know, I didn't mention how much mindfulness and meditation and all sorts of things play a role in my life, I need it. I do a lot of studying on meditation. I'm not particularly I don't excel in that area as far as my understanding of mindfulness, but I practice as much as I can. And so I want to have sort of a, some sort of a retreat in in the great state of Montana to show and, and get people together that may not have the exact same condition, but something similar to get outside and enjoy and, and have some community together and learn from each other.

Scott Benner 1:20:48
Yeah, well tell people the web address again.

Jonathan 1:20:50
So it's E. G. adventures.org.

Scott Benner 1:20:55
I really appreciate you coming on and sharing all this with me today. Thank

Jonathan 1:20:57
you. Thank you so much. I really appreciate everything you do. And it's it's fantastic. Thanks for everything.

Scott Benner 1:21:02
You're very nice. It's my pleasure. Hold on one second for me. Okay. Jonathan, I'm gonna hit stop in a second, but I'm just gonna leave a note to myself call this it's never sarcoidosis. There we go. Yes,

Jonathan 1:21:14
yes. Yes, I am glad you're going that route. That's awesome.

Scott Benner 1:21:28
Huge thanks to cozy Earth for sponsoring this episode of The Juicebox Podcast cozy earth.com. use the offer code juice box at checkout to save 40% off of your entire order. A huge thanks to us med for sponsoring this episode of The Juicebox Podcast. Don't forget us med.com/juice box. This is where we get our diabetes supplies from you can as well use the link or call 888-721-1514 Use the link or call the number get your free benefits check so that you can start getting your diabetes supplies the way we do from us med. I haven't mentioned this much. But the new link in the show notes for cozy earth actually takes you right to a page where everything's already 40% off. So I mean, pretty cool. 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. If you're not already subscribed or following in your favorite audio app, please take the time now to do that. It really helps the show and get those automatic downloads set up so you never miss an episode. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast. The episode you just heard was professionally edited by wrong way recording. Wrong way recording.com

#1143 Near Arkansas?

Kinlee has type 1 diabetes. We talked about eating disorder, being misdiagnosed and the consequences of starting insulin without proper education.

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Hello friends, welcome to episode 1143 of Juicebox Podcast.

Today I'll be speaking with Kinley, she's 21 years old has had type one diabetes for just over a year, we're going to talk about a lot actually there's a misdiagnosis in here, a pod five, body image issues, and anorexia, diagnosis and a lot more. 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. When you place your first order for ag one with my link, you'll get five free travel packs and a free year supply of vitamin D. Drink ag one.com/juice box. 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 juice box at checkout. That's juice box at checkout to save 40% at cozy earth.com. If you're not already subscribed or following in your favorite audio app, please take the time now to do that. It really helps the show and get those automatic downloads set up so you never miss an episode.

If you're a US resident and have type one diabetes, or are the caregiver of someone with type one, the T one D exchange is looking for you t one D exchange.org/juicebox. Take about 15 minutes to join the registry just fill out that survey. And when you've completed the survey, you're helping people with type one diabetes, and you're supporting the Juicebox Podcast T one D exchange.org/juicebox. The T one D exchange is looking for everyone. But in particular right now males and males of color. If you fit the bill or if you have a child who fits the bill, please reach out to one D exchange.org/juice box.

Kinlee 2:10
My name is Kinley Fenton, and I am 21 years old. And I'm a college student. And I have had type one diabetes, or a little bit over a year. Just a year. Yes, I was diagnosed in April of 2022. Recently, okay, so yeah, I got sick though, in 2021, like the fall of 2021. But we didn't figure out that it was only peds until April of 2022.

Scott Benner 2:46
So you think that your first kind of showing of type one happened the fall, but maybe there was a honeymoon and your pancreas kind of picked back up again and kept going a little longer.

Kinlee 2:56
So I got COVID and mono at the same time. Okay, in September of 2021, kissing

Scott Benner 3:04
somebody with COVID.

Kinlee 3:10
I, yeah, I got that in September 2021. And they think that's when it happened. And I continued to get sick. Just constantly, I was constantly sick all the way until April. And then it was like a couple of weeks before I went to get checked. And that's when like my symptoms really started picking up. And I had a best friend in high school and her dad had type one diabetes. And I remember her mom telling me, like all of the warning signs of type one diabetes. And I was like, Hey, I think maybe I might have that. And so that's what I went to go get checked

Scott Benner 3:54
in late. I'm old. But I had mono around the age you had it. And I remembered as an incredibly miserable experience. It was awful. Yeah. And that I had COVID Last year, which was also miserable for me.

Speaker 1 4:09
Yes, at the same time. I had them at the same time I wanted that last for

Kinlee 4:16
I don't think I truly recovered from my mono. Until I was diagnosed like it I was just constantly tired. And like I just could not I just could not get rest. And so I was really sick with mono and then also having diabetes on top of that and not knowing I was just miserable is and I kind of go ahead No

Scott Benner 4:43
Don't Don't worry. I was just gonna go keep talking about is my question when you're done.

Kinlee 4:46
I just kind of like I attributed it to college. And I was like I'm just tired. You know, our dorms are kind of gross. Like, I'm probably just getting sick from mold or something like I don't know, but it. Yeah. Turns out it was not.

Scott Benner 5:02
My son was sick his entire freshman year from how 30 his dorm was. Yes.

Kinlee 5:06
And I mean, that makes sense. Like, and my family, like they didn't know, you know, we all just attributed it to college and just being tired and just constantly going, is

Scott Benner 5:18
mono a thing they can absolutely diagnose like with a test. Where did they just? They did. Okay. Yeah,

Kinlee 5:25
they took my blood and, and they tested it for mom, they

Scott Benner 5:28
were like, who can lay you're kissing somebody like you must be able to get that a different way.

Kinlee 5:37
I was like, man, there's so many different ways you could get that right.

Scott Benner 5:39
Oh, my God, mom. What happened? My parents are like, Oh, my No. And I was like, I don't know. I don't. I don't know why they. I think I got that from a dirty dish towel. Now. You see, get the diagnosis for the type one. Are you a college when that happens? Yes, I was a sophomore in college. But you were actually on campus when it happened. I was on campus. Yes. So you're at the like the little health office going like, Hey, I know you don't know anything, but I think I'm sick. Or you call your parents or

Kinlee 6:08
I went to the doctor. I didn't go to the campus doctor, I went to one in a town close to me. And I had just, I called or I had told my friends and my family. I was like, I just really think that I need to go get tested for diabetes. And you know, everyone was kind of like, oh can lay like, whatever, like shut up. You know, I was like, Yeah, I just think maybe I just I was just so sick and tired at this point. And I was like, even if I don't have diabetes, I just really hope that they can at least figure out what is wrong. Like, I didn't know if I was having another mono flare up. I didn't know if I COVID I didn't know what was happening. But

Scott Benner 6:50
you were driving, you were really tired. And I felt

Kinlee 6:54
so I have not known. Like, they told me when I was diagnosed, they were like you are about to figure out just how bad you have been feeling. Okay. And they were right. Like, as soon as I started trading myself, it I just felt like I had so much energy. And you know, it came with its complications, of course, but I remember telling my mom, she was like, okay, and I haven't I walked into the doctor's office, and I told them that I wanted to be tested for diabetes, and they kind of looked at me funny. And they were like, okay, and yeah, tell me

Scott Benner 7:30
the reasons how you get to that on your own? Because I mean, is there type one in your family? Is it the internet? did you how did you figure it

Kinlee 7:38
out? No, there is no type one in my family. We have some type two, but no type one. And like I said, my best friend in high school. Her dad had type one diabetes. And I just remember her mom telling me some of the warning signs like if you ever have to pee a bunch of you ever super thirsty like you. Those are some of the warning signs.

Scott Benner 8:02
And that's stuck to you. Hey, before we keep going, is there a fan or something noisy behind? You? Know, okay, when you talk I'm hearing a rumble behind yourself. Sometimes it's Oh, I

Kinlee 8:15
hear a mower outside. Is that it? Oh, okay. Yeah, I can move room so

Scott Benner 8:19
well, you can go out the window and be like, Man

Unknown Speaker 8:23
to make. I don't know how much they'd appreciate.

Scott Benner 8:26
I don't care. Are you at school right now or not yet? No,

Kinlee 8:29
I'm at school. But I'm at one of my friend's house right now. Because it's impossible to find a quiet place in the dorm

Scott Benner 8:37
to Yeah, no, I've I I've tried to talk to my daughter on the phone.

Kinlee 8:42
Yeah. Oh, no. Yeah, it just doesn't work

Scott Benner 8:46
was easier with my son for some reason. Like yeah, boys would like they all turn into like little gentlemen. They're like a Hello, sir. Like that kind of stuff. I think that's what they're doing.

Kinlee 8:57
No, I just know that some of them would bust in my room and be like, Why don't you? Have

Scott Benner 9:01
you seen this video? Out the litter box and the packs and then the other cat. I'll be like,

Kinlee 9:11
okay, is that better?

Scott Benner 9:13
You have to talk for me to know. Okay. Yes, you got it. Okay. So what happens is you're wearing noise cancelling headphones. So when you're not speaking, it doesn't matter. And when you are speaking it lets the noise so the more that goes. Yeah, and I'm probably the only one that hears everyone listening right now is like, What the hell are you doing? But it's my my brain just goes, oh, there's noise behind her that I have trouble listening to. So that's okay. Once there was a time when I just told people if you want a low and stable a one C, just listen to the Juicebox Podcast. But as the years went on, and the podcast episodes grew, it became more and more difficult for people to listen to everyone. So I made the diabetes Pro Tip series. This series is with me and Jenny Smith, Jenny is a Certified diabetes Care and Education Specialist. She's also a registered and licensed dietitian and a type one herself for over 30 years and I of course, am the father of a child who was diagnosed at age two in 2006. The Pro Tip series begins at episode 1000 with an episode called newly diagnosed are starting over and from they're all about MDI Pre-Bolus Singh insulin pumping, pumping and nudging variables exercise illness, injury surgeries, glucagon long term health bumping and nudging how to explain type one to your family, postpartum honeymoon, transitioning all about insulin Temp, Basal, these are all different episodes, setting your Basal insulin, fat and protein pregnancy, the glycemic index and load and so much more like female hormones and weight loss. Head now to juicebox podcast.com. Go up in the menu at the top and click on diabetes pro tip. Or if you're in the private Facebook group, there's a list of these episodes, right in the feature tab. Find out how I helped keep my daughter's a one C between five, two and six, two for the last 10 years without diet restrictions. juicebox podcast.com Start listening today. It's absolutely free.

Kinlee 11:20
The mower is just like, he's like going around the house. So he might just like

Scott Benner 11:25
find your site again. Yeah, he might come back up, but don't get too focused on it. It wasn't terrible. Don't worry. Okay. So you walk into the doctor, you're like, Hey, I'm self diagnosing myself with diabetes. And they they really do a finger stick or they

Kinlee 11:41
lie, though. They took my blood. Okay.

Scott Benner 11:44
And and so you didn't get an answer right away? Or you did?

Kinlee 11:48
I did. They checked my blood sugar levels and my agency. And so they knew right then that I had it. But they told me they didn't know what type? Yeah, I didn't know if it was type one or type two. And so I was just given insulin pins and needles and

Scott Benner 12:11
things laughing because how old were you? I was 20. Yeah. And how far from home? Do you is school? It's just an hour. Okay. So you got your your mom's on the way.

Kinlee 12:23
My mom was there with me. She

Scott Benner 12:25
made it there with you. Okay, good. Yeah,

Kinlee 12:27
she she came with me. And I was just sitting there, like bawling my eyes out. They were like, here's all your stuff. And they just kind of gave it to me, and didn't really tell me how to use it at all. Really. I was told to prick my finger, like three times a day. And then I was given a sheet just based off of my blood sugar, how much insulin to give myself, just until they figured out

Scott Benner 12:55
what type it was. I'm a little. So I'm a little surprised you didn't get better direction? Not that. I mean, most people don't. That's not why I'm surprised. I'm surprised because they did a very responsible thing by saying to you, we don't know what type of diabetes you have. So I thought, oh, maybe you found a good doctor. Because that part was uplifting to me. I was like, oh, that's the right way to say that. But then you got like, here's the stuff. Good luck.

Kinlee 13:20
Yeah, yeah. But I have a great doctor now. And this was just my primary care physician. So it wasn't an endocrinologist.

Scott Benner 13:33
Yeah. But still, though, like Kelly, you know, that you can hurt yourself with that insulin. Right? Yeah. Yeah. It's interesting. So all right. So you, you make an appointment, I imagine with an endo, but how long does it take to get that appointment?

Kinlee 13:45
I did not make an appointment with an endocrinologist at that point.

Scott Benner 13:49
Yes, went home with your pens. And you're like, here we go. I went back

Kinlee 13:53
to college, and me and my mom went to Target. And we got a pretty pink case to keep all of my stuff. And just, we were just trying to make it as good as we possibly could. And then she dropped me back off at school. And I was just like, Okay, I had no idea what was happening. And they were like, we'll contact you in two weeks and let you know what time it is. And so during those two weeks, I was just doing the best I could I had a super scary low. Just because I didn't I had no idea what I was doing. Yeah, no kidding. I had no idea what I was doing. And so I had a low and then I ate a whole pack of Skittles because I didn't know what was happening. And then my blood sugar shot up to like 500 And I was like

Scott Benner 14:39
Can I tell you something to look forward to when you get older if you're gonna have children. You said my mom took me to target and got me a pink case to put my stuff in and it made me cry. And now I'm gonna have to explain to you why because you're like, five years old, like you know, in the grand scheme of things. It's because I pictured your mom and helpless, trying to do something to make you feel better. Yeah. And it made me an Elmo weepy This is crazy.

Kinlee 15:09
Yeah, that's, that's what it was because it's like at that point, what do you do?

Scott Benner 15:14
No, I mean, cuz it's her intention to leave you at school. She doesn't know anything about diabetes any more than you do. And the people at the doctor's office are like, here. Here's the stuff. Like they didn't make it sound like you were in trouble. Like, right? So, right? What's your major psychology? Okay. All right. So, do you play any sports at school?

Unknown Speaker 15:34
I do not. Alright. Alright. So

Scott Benner 15:37
you're back at school having low blood sugars than driving your blood sugar up really high. This is just last year, as your some agents are this, it's 16 months ago. So what happens like keep keep taking me on this trip, like, okay,

Kinlee 15:51
so a couple, I just kind of honestly survived those two weeks. That was what I was doing, just trying to survive. And they called me and told me that I had type two diabetes, because my pancreas was still making some insulin. That was their reasoning. And

Scott Benner 16:13
this is the just the general practitioners office. Yeah. Okay.

Kinlee 16:16
And so he told me, and he was great. He, he was very helpful. But he told me that I did not need insulin. And he was going to put me on Metformin. And to do away with all of my insulin, I wasn't going to need to prick my finger anymore. Oh, the motors coming by?

Scott Benner 16:37
I know I heard it. But don't worry. So. Isn't that great? So now, not only is he telling you, you have the wrong kind of diabetes, but now he's giving you bad advice for how to manage type two diabetes. You don't need to prick your finger. Don't worry about it. It's gonna we're just gonna take a pill. Right? Yeah, you were probably relieved. No. Yeah,

Kinlee 16:56
I mean, yeah, I was relieved. But I also felt this whole time, I felt something in my gut telling me that that wasn't right. Okay, good for you. And I have gotten really good at listening to my body and just knowing what's wrong. And that's, oh, my goodness, this mower is making me angry. Okay, sorry.

Scott Benner 17:20
No, no, you're fine. Don't worry about I appreciate you caring. What do you think by the way, you didn't notice that before? And then I put it in your head. Now. You're like, the mower is following me.

Kinlee 17:27
I think he just turned it off. So

Scott Benner 17:30
if you can tell what kind of mower it is, we can name your episode that is it. Is it a Toro or I don't know I can see. Okay, so go ahead. You're listening to your body?

Kinlee 17:40
Uh huh. I just didn't really get listen to my body. And it was I just had in my brain that something was wrong. But I had already agreed to do an internship that summer, four hours away from home. And so I traveled four hours away from home with my bottle of metformin. And I just tried to make it that summer. And we were constantly texting my doctor, just saying, my blood sugar is still running in the five hundreds every

Scott Benner 18:12
day, you're living like that. Oh, yeah. Did you ever go in DKA? No. Somehow, in your popping these Metformin is probably eaten very little.

Kinlee 18:24
Oh, ha pawikan. These Metformin is you know, doing all that. I told him, I said, this isn't working, they switched me to Jardiance. That didn't work. And so I said, Okay, I'm gonna do this on my own. And I got my insulin, and I started giving it to myself. And I had, I know, I was miserable. And I was like, I don't know what to do anymore. And no one was telling me what to do. No one was telling me how to do it. And I when I tell you, I had no idea what I was doing. I was giving myself insulin after I was eating. And I didn't have long lasting insulin, it was only fast acting. Yeah. And so I was giving myself insulin after I ate because I thought that's what you're supposed to do. And I remember texting my mom. At one point, I was like, I think maybe I need to give myself insulin before I eat. Like, I think maybe that would work better. And she was like, hey, like, you could try that. You know? And I just had no idea.

Scott Benner 19:26
Yeah, but you're treating yourself like a type two, even though you don't think that's true? Is that right? Yes,

Kinlee 19:32
I was still taking the pills. But I started to give myself insulin. Were you losing a lot of weight? Not at this point I had before I was diagnosed, but not at this point.

Scott Benner 19:48
Okay, so you had already lost? Do you know how much you lost? Percentage of your body weight? No,

Kinlee 19:54
I don't know how much but it was enough to notice.

Scott Benner 19:58
Okay. Well, I mean, listen any insulin that you gave yourself was going to be valuable, obviously, less valuable after you eat and without Basal insulin, you know, still less valuable, but at least it was probably saving you. So how long did you do that for?

Kinlee 20:11
I did that all summer, the whole summer?

Scott Benner 20:15
Oh my gosh, boy, you're off at the thing. Okay. Yes, I felt crappy the whole time.

Kinlee 20:19
Yes, I was very sick and just tired. And I was just so confused. Because I was like, I thought I was supposed to be getting better. They told me that this was what I needed. And like I said, this whole time, I just felt something was very, very wrong with my diagnosis. And I was giving myself 10 shots a day around that. I mean, it was insane how much insulin I was having to give myself because I just didn't know how to use it. Right. And I remember, I texted my mom and started asking about insulin. And my mom was great through all of this. I mean, she didn't know any better, you know, than I did, that she was very helpful. And I read texted her and started talking about insulin pumps. And she messaged my primary care doctor about it. And he said, Oh, I don't, you know, I don't deal with that. And that's when he finally referred me to an endocrinologist.

Scott Benner 21:17
Wow, that's the thing that saves you was asking for the pump, because it gets you to a doctor who might actually know what's happening so that they immediately look at you and go, Hey, we're gonna run some labs here.

Kinlee 21:27
Yeah, I told her kind of what was happening. And before she even tested me, she looked at me and she said, You're type one. And she did test my blood and, and it did genotype one. But before I even did that she just knew. And so I got put on the Dexcom and the Omni pod pretty quickly after that,

Scott Benner 21:52
okay. Basal insulin going and yet doing all the things right,

Kinlee 21:58
until I could get my Omni podium. She gave me my long acting insulin. And I was like, Man, I don't even know what you know. And she taught me how to use it. And she told me what to do. What's

Scott Benner 22:15
the frame of time now from the time, like, not from back in the fall, but when you actually end up somebody telling you you have type two diabetes until you get to the end, though? How long is that process?

Kinlee 22:24
That so I was diagnosed in April with type two diabetes? And then I went to see my Endo. At the beginning of August. Wow. Four

Scott Benner 22:34
months? Yes. Wow. Okay. Well, you're lucky your life. Yes,

Kinlee 22:38
you are correct.

Scott Benner 22:41
Now, how Okay, so how do things proceed after that? Like it because there's a lot of in your notes, there's a lot of talk here about like eating disorders, mental health, stuff like that. So what, what, what started to happen? Yeah,

Kinlee 22:53
so at this point, I was on the Omnipod, in the Dexcom. And I went back to school for my junior year. And I just, I had better control over my numbers. But it wasn't perfect, obviously. And it's not going to be. And that really bothered me. Because I felt like I had no control over my body. I felt like I had no control over my blood sugar. I just, I was frustrated with people not listening to me. And I just felt like I had no control over anything. And also, during the summer, I had gained some weight, just from giving myself so much insulin and not chasing lows with food. And just, I was just all over the place. Yeah. And I've always kind of had some body image issues, but it just really escalated whenever I gained some weight. And, yes, I went back to school, and I just felt very, very out of control. I felt like I was doing everything wrong, even though I was on the Omnipod and the Dexcom. I still didn't know what I was doing. Right? Yeah, so I just still didn't know what to do felt very out of control. I talked to my endocrinologist, and she put me on Manjaro which is basically the same thing as it was a big

Scott Benner 24:20
Yeah, it's a GLP one actually. Manjaro GLP one and GLP two, right. Yeah, I think so. And she did that for you for weight or for blood sugar management or both.

Kinlee 24:32
Yeah, it was mainly for the weight just because I had said I've gained some weight and I just kind of felt like like the insulin was making me retain some weight. I wasn't really sure but what I didn't know was that it's an appetite suppressant. I didn't know that I just thought that it was going to help control my numbers better therefore giving myself lessons one, which it did, right but it also suppressed my appetite. Yeah, no kidding. And I I didn't know that that was gonna happen. And I have always kind of, like in high school and even in middle school, I wished that I had the willpower to not eat, I would always tell myself that meant like, I just, I just didn't have that willpower, you know, because it's normal for a human being to eat. And then all of a sudden, I had that willpower not to, because I was on this Manjaro Yeah. And so that is exactly what I did was I stopped eating. And when I stopped eating, I was able to see my numbers be perfect. Because I wasn't taking

Scott Benner 25:42
any carbs. Really? Yeah, people aren't gonna know. So you and I have a lot in common here because I've I on a GLP one drug too. So I know exactly what you're talking about. Can you help me contextually? You don't have to just say no, if you don't want to, but how much weight did you gain? And how much weight did you think you had to lose? is my question. I

Kinlee 26:01
gained? Probably 20 pounds

Scott Benner 26:05
over the summer. And how much did you think you could stand to lose?

Kinlee 26:09
I lost? I lost 60 pounds. That was weighed I never should have lost.

Scott Benner 26:18
So that was too much. Okay. Yeah. How long did it take for that weight to come off? So

Kinlee 26:24
I stopped eating. I was eating some but I wasn't eating enough. I was. Yeah. That was from September. to January. Wow.

Scott Benner 26:38
September, October, November, December, January. Yeah. Well, that's about what I expect from the drug. Actually. It's I mean, so here's how I would explain it to somebody. Your brain does not know if you're hungry or not. So you're not hungry in your head. Your stomach feels full. So you're physically not hungry. You can go on without eating forever without noticing it. Does that seem about accurate for how you felt? Yes, yes. And then on top of that, you're losing weight in other ways because of the medication as well.

Unknown Speaker 27:15
Yeah. Okay.

Kinlee 27:16
Yeah. But I also found that my blood sugar, like I said, was perfect. And I just felt like I had so much control over my life over my body over everything. I was like, this is perfect. This is exactly what I need to be doing. And it was frustrating. Because I actually went into honeymoon during this time. And I was like, Oh, this is what my body wants me to do. This is what my body needs, is to just not eat.

Scott Benner 27:49
Do you think it was a honeymoon Kinley? Or do you think it was just you had you were so restricted on your intake that you just didn't need very much insulin? We

Kinlee 27:56
still don't know. I talked to my endo about that. And she she doesn't know. Because I asked her. I was like, Do you actually think I was in high energy? Just think that I was restricting. And she was like, you know, I guess we'll never know. I

Scott Benner 28:11
have my guess. Yeah. So what do I want to ask you? So you didn't answer the one question which I kind of need to formulate my next thought. So, you again, you again, 20. You lost 60. But my question is, how much did you think you wanted to lose? The last 60? But you didn't want that much? What was the number you were looking for?

Kinlee 28:32
I wanted to go until I couldn't anymore. Oh, okay.

Scott Benner 28:36
So you had that mindset? I'm wondering, like, where? Because if you just needed to lose 20 pounds, for example. I mean, GLP. One is, I mean, I'm not a doctor. But that seems like overkill to lose 20 to lose 20 pounds, because you are, if it works on you, and it worked on you. You really, I mean, I'm 17 or 18 weeks into using Rico v. And I'm still like, every time I eat, I'm eating because I know I have to I am not eating because I'm sitting there thinking, Oh, I really have to eat something.

Kinlee 29:09
Yeah. And I think in that sense, it can be good for people. I think I just had a very, very different mindset. And at first it was, oh, you know, this is great. Like, I just want to lose a few pounds, you know, nothing wrong with that, whatever. And it suddenly turned into I want to have this control over my life over my blood sugar. I want my blood sugar to be perfect. And I'm going to do that by not eating.

Scott Benner 29:36
Would you consider that an eating disorder or did you were you consider it? You do?

Kinlee 29:41
Yeah, okay. Yeah, I was diagnosed with anorexia. I went to the doctor in December, and they diagnosed me and I got off of Manjaro and nothing changed.

Scott Benner 29:53
Oh, I see. Yes. So you did you ever have. Okay, so the question is, did you have have an eating disorder ever prior to the type one or two, you know, so you think that the GLP medication stops you from being hungry, your insulin needs go down, it sends you all that feeling of control. And then you get lost in the idea of I have to keep losing weight for this to keep happening. Is that right? Yes,

Kinlee 30:19
it was. It was just a series of things. I think. I think like I said, it started out as just want to lose a few pounds. And then it turned into, and I think for a lot of people, that's what it is, you know, and that's all that it is. But mine just continued to go down this rabbit hole you snowballed, right? Yes. And then suddenly, it turned less physical and more mental. And I just crave this control when I was really completely losing control.

Scott Benner 30:51
Yeah. So listen, I have a very, like limited understanding of this never happened to me, but I had this one experience. I had this one experience years ago, where my this is gonna sound weird. My dentist told me you have type two diabetes, because I peed a bunch of times while I was having a long procedure. And, and I was like, I would definitely know if I had type two diabetes. I'm like, I, I, you might even I might be the guy you asked if you had diabetes, like I think I think I would know, you know. Yeah. But anyway, but nevertheless, I had drank a lot of water that day. So I kind of was like, No, that's not right. But once he put it into my head, I went home and I thought, well, I'm going to, I'm going to get a doctor's appointment. So I called and I made a doctor's appointment for a physical, but I couldn't get there for like, four or five days a week, right? And for those days, I had real trouble eating. Because I thought, Oh, what if I'm driving my blood sugar up. And I have doubt, I'm testing my blood sugar, because I've meters all over the place. My blood sugar is not high. But I'm still it's in my head. As soon as they put it into my head. Type Two diabetes. I had trouble eating. And it was really, I don't know that I'll ever find a way to articulate how manipulative it was. To my actions. Yeah, yeah. So.

Kinlee 32:17
And the more I've talked to people since going through this, the more common I found that it really is, yeah, because it's just you. You just have this sense of like, Oh, I just feel out of control. Like when my blood sugar is high. Like I just want it to be perfect all the time. So it's frustrating. And I just found that my blood sugar was perfect when I wasn't eating but I I pretty quickly found out that that was not sustainable.

Scott Benner 32:47
Yeah. This just for context, this 60 pounds off your frame left you like very thin. Um, yes. Yeah. Okay. in an unhealthy way, visually even. Yeah. Okay. So when that's happening, you don't see it though, right?

Kinlee 33:05
No, I did not. Yeah, I was also diagnosed with body dysmorphia. And so I looked in the mirror, and I saw what I was 60 pounds ago. Wow,

Scott Benner 33:16
I have to tell you. So again, my only other frame of reference for this is I start taking weak Ovie. And I'm like, overweight, like absolutely overweight. And I lose first five pounds, like why I lost five pounds, you don't really notice much. And then suddenly, I could see my stomach shrinking, right? That was the first place I saw it. Like, like, my stomach wasn't sticking out as far and I was like, Oh, wow, this is crazy. I looked different. But then when my face changed, it was a big leap for me. Like, I looked in the mirror and I thought my face is thinner. I look different. I'm happier with how I look in my face. And I went on, I've lost 30 pounds so far. I'm nowhere near like, I need to lose more weight, right? But I've lost 30 pounds. It's a big deal. I mean, even if I don't lose weight one week, I maintain that weight. So I'm doing well. Like it's a very slow process. I'm happy with the speed of it. Like none of that. But the craziest ass thing happened like two weeks ago. I looked in the mirror and I thought my face looks fat. And then I looked at a picture of myself versus three or four weeks ago, and my face is thinner now than it was three or four weeks ago. So my face was round and, and Turbie I lost weight. I recognize that but I got used to that so quickly. That the next time I looked at it again, I thought oh my face is fat. And that that's I'll tell you was was really like an impactful moment. For me. I was like oh Oh my God, I don't see myself right. And I don't think I have body dysmorphia. I think your brain just for me, I think my brain is just getting used to what I'm looking at, like, and then it, it tells you either you're okay, this is what you look like, or this is what you look like, and this isn't where you want to be. And then that's it. It's difficult to break free of that. For me, yeah.

Kinlee 35:23
I mean, it was just I would, you know, people would tell me, my, my parents will tell me, You look sick, you know, you don't look good. And honestly, at that time, that's what my brain wanted to hear. For me. People telling me that I looked sick was what I that's what I wanted. That meant then. Yes, that. And when people told me they were worried about me in my head, it was like, yeah, like, this is good. You know. And I remember even when I was diagnosed with anorexia by a doctor, and she told me that I could die. My brain was like, yeah, like, this is

Scott Benner 36:01
good. I'm getting there. But you want yeah. Wow. Isn't that crazy? You felt empowered by them telling you, you look like you were gonna die? Yes.

Kinlee 36:10
Wow. That is what my eating disorder. That's not what I wanted. Sure. It's not what Kimberly wanted. It's what my eating disorder wants. And since since then, I've gotten good at being able to tell the difference between the two, then I thought that is what I wanted. And I was happy when people were worried about,

Scott Benner 36:31
okay. Do you think the diabetes brought the eating disorder on? Or do you think the weight gain and then watching it come off? Brought it on? What do you think?

Kinlee 36:41
I think I think it was both combination, because I got very addicted to seeing the weight fall. I mean, I was weighing myself up to 10 times a day, you know, just constantly watching that scale drop.

Scott Benner 36:54
Are you really? Yeah, 10 times.

Kinlee 36:58
Yeah. But then, when it came to the diabetes, and I just felt so out of control of my numbers. And I found that not eating, control by numbers. My body, my body went into honeymoon or whatever happened there. And it was very confusing for my brain. Because in my head, I was like, This is good. This is what my body needs. This is what my body wants, like I can, I can take care of my diabetes by not eating

Scott Benner 37:33
and never thinking about anything like nutrition, or minerals, or vitamins, or any of the things that your body actually needs to keep going. No,

Kinlee 37:41
I didn't care at the time, just how it looked.

Scott Benner 37:45
Where your blood sugar was, and how you looked physically.

Kinlee 37:48
And I remember I would, at the end of the day, I would look at my Dexcom graph. And I would just see it like, a complete straight line. And I would just be like, yes. Like, that is what I want. That is good. Didn't

Scott Benner 38:01
matter that you weren't eating or, or that somebody told you you weren't going to be alive much longer. Right? Yeah.

Kinlee 38:08
I mean, my eating disorder became became my best friend. How

Unknown Speaker 38:16
would you say how was that?

Kinlee 38:18
It just promised me and I, I always tell people when they asked me about my eating disorder, that it's like a person in my head, it's a voice in your head. And it just told me that the things that I was doing the things it was telling me to do were good. And that people would love me, if I did them, people would find me attractive. If I did them, I had all the control in the world. If I followed all of its rules, and it just became something. And and

Scott Benner 38:52
it paid, it paid you back to write like it promised something, and then it gave it to you. Yeah.

Kinlee 38:57
And like, if I would restrict, or if I would purge, or exercise. It would congratulate me. And it was so nice to me in my head, and it would tell me how beautiful I am how skinny I am, how in control I was of my life. But if I would eat something I wasn't, quote unquote, supposed to or said something. It would just beat me up. I mean, tell me the most awful things. And so it was just easier to do what it wanted. And I just didn't know how to fight that voice at the time.

Scott Benner 39:36
Wow. That sounds good. And how are you feeling now?

Kinlee 39:41
Um, so after I was diagnosed by a doctor, I decided to go to treatment in January. And so I did a PHP treatment program for 11 weeks. And then I did an IOP program. For, I think, seven, six or seven weeks. And now I'm out of treatment feel. And during that time, my diabetes came back or, you know, obviously, my blood sugar was racing again. And that was really, really, really tough to work through. Because I just felt like I was doing something wrong to my body. I felt like, this isn't right, this isn't what my body wants. But working with my dietician and my therapist, we found ways to control my blood sugar. And to help me feel like I had control over my body without

Scott Benner 40:36
restricting. Can you tell me some of the ways you accomplish that? Well,

Kinlee 40:40
I got back on my pump while I was in treatment, because I had gotten off of it, because I just wasn't eating enough to even need it. So I got off my pump and got back on it. And we just would dose for everything correctly. And I honestly still, like at that point, didn't really know how to like carb count. And does myself, Greg did. And so correctly, so we worked on that, and just worked on like, how to control my blood sugar with insulin. And that was when I really learned, like, Okay, this is what I need to do. And I also switched to the T slim during that time. Okay, and I like it a lot more than the Omni pod. So that was very helpful.

Unknown Speaker 41:27
What did you like better about it?

Kinlee 41:29
I just think it's more aggressive. Like when my blood sugar's high, it just always, like gets me down pretty quickly. Because the Omni pod Yes, algorithm, I love it. And it just helped me feel more in control. Alright,

Scott Benner 41:44
so now I have a difficult question for you that and by the way, you've done a really lovely job of talking about all this, I hope I've been as sensitive as you need me to be i This is not a subject I know, like a ton about so. But I'm gonna ask you a question that you may or may not have an answer to, but really give it a second. Let's go back in a time machine to the day you think you have diabetes, and you're gonna go to the doctor. Are there things an alternate reality that could have happened? That would have avoided all this? Yeah. What do you think those things are

Kinlee 42:19
being sent to an endocrinologist right away?

Scott Benner 42:22
You just think those four months what got you messed up? Yeah, go ahead. Good tell me

Kinlee 42:27
to do during that time was when I gained quite a bit of weight because I didn't know how to dose myself correctly. And I'm not saying that insulin makes you gain a whole bunch of weight. But the way that I was doing it did

Scott Benner 42:39
well, you were to be clear to people, you were randomly giving yourself insulin at meals based on like, you're like, hey, I think this may be as a thing because my blood sugar's 500. And then you were making yourself low at points and taking in a bunch of carbs. So you're taking even more carbs and your blood sugars are bouncing all over the place, you're throwing insulin here and there that yeah,

Kinlee 43:00
that is what I was doing. It was not controlled by any means. And it was hard for me when I was in treatment, when I got back on my insulin to believe that I wouldn't just gain all that weight again. And I still struggle with that sometimes, just because I've experienced that. And in my head, I'm just like, oh, that's gonna happen again. But it hasn't. And I'm still teaching myself that. And now that I have, and it's not perfect, obviously, some days are really crappy. But now that I have the means to control my blood sugar is a lot better. But yeah, I believe that I should have been sent to an endocrinologist right away. I think that whether you're type one or type two, you should see an endocrinologist. That's just my opinion. I think that that should have happened pretty quickly. And I think a lot of this could have been avoided, possibly,

Scott Benner 44:04
what and isn't it? I mean, interesting. This is the impacts that got you the eating disorder, like that kind of stuff. But it very easily could have been a different impact. Or you could have actually had type two diabetes and been scared of food, like I talked about before, and like there's just, you know, a number of, I guess there's one good path. And there are so many possible bad paths, you know, and it's not. It's not, it's not poor intentions. It's not, it's just that if the doctor doesn't know what to tell you, if they don't tell it to you in a way that you can understand if it isn't information that's actionable, if they don't, I think one of the biggest mistakes that all doctors could make is giving you like a step. Like say you're in a three step process. I don't know what the step is. We're going to start with Basal insulin. and these are your settings. But they don't tell you, these settings are going to change. And so I've seen people get lost and I don't know what I'm doing wrong. Like I've done everything I was told but my blood sugar's are higher than they should be like that pain, that kind of psychological torment that you go through minute by minute, day after day is unnecessary and could have been stopped by just saying, Hey, these are your settings, but we expect these are going to change pretty quickly. So if you don't start getting what you expect, let us know, we'll change the settings. All right, that's all you have to do, just say the rest of it, you know, right. And otherwise, people end up in just a myriad of different crappy situations. Yours is one of them. But I've heard a ton of others too, you know, and it's all about how it starts. In that beginning with what you understand and what you expect. That's my opinion. So,

Kinlee 45:57
and I don't blame anyone. I don't blame my daughter. I don't blame my parents. I don't blame anyone. We just didn't know. You know, and now that I do know, I want to make it known for other people.

Scott Benner 46:10
We can leave your very nice, but I knew you just didn't know me. There are other doctors that knew you just didn't know them. Like, I'm not saying anybody, like willfully messed you up, right?

Kinlee 46:23
I know, right? I

Scott Benner 46:24
know. And I and you're very nice. Of course, you're very nice to protect people. And that's lovely. But I'm saying that there's a base amount of knowledge that if any doctor had wouldn't have led you down this path, and I don't want you to be mad about it. Or I You sound very kind of, like healthy about it, honestly. Which is nice. I don't understand. You're 21 Why are you so nice? I don't know. Because you're not mad? You're not angry? You're not blaming anybody mad?

Kinlee 46:51
No, I? If I think about too, I get frustrated. Um, but I just have to get past it. Yeah, I mean, that's how it happened. I have a great doctor now. She's awesome. And I'm good. Now,

Scott Benner 47:09
when you talk about it in treatment, for your eating disorder. Is there talk like, this is a thing you get past? Is it a? Is it a thing you always look for? Are you living with it? Like, what's the phrasing around? Does that make sense? my eating disorder? Yeah. Like, you know, when somebody will tell you like, it's not like you're a cured alcoholic, you're an alcoholic who's not drinking currently? Like, is it like that? Or how does it go? Right?

Kinlee 47:35
I think for me, the voice of my eating disorder, I don't want to say is always going to be there, I'm pretty fresh out of treatment, you know, I had the summer to be at home and stuff. But the voice is still there. And like, when I eat something that maybe I wouldn't have eaten in my eating disorder, or I lay in my bed instead of exercise or something like that. The voice can get loud, and can tell me things that just aren't nice. But I have learned in treatment, how to battle that voice, and how to stand up against that voice. And so I would say the voice has gotten quieter, but it's still there. I just know how to stand up to it. Gotcha. And so it's still struggle. And it's still you know, I consider myself still in active recovery. And every day is different. Some days are a lot harder than others. And people tell me, people that have had an eating disorder or work with users, that it can go away. And it can

Scott Benner 48:40
be different, like in the past. It could feel it's possible that one day, it'll feel like a thing that used to happen to you doesn't have.

Kinlee 48:49
Okay, yes. And I haven't experienced that yet. Right. It's definitely it's gotten so much better. And I'm at a point where, like I said, I consider myself in recovery. But I've heard that one day it can go away. And so I hope that is you know, and when I keep fighting it and just keep doing what I can to stand up against it. Hopefully one day it can go away. Until then I'll continue to fight it. Yeah.

Scott Benner 49:19
And you handle it the way you're handling it right now. Is it? Is there maintenance, like mental health maintenance? Do you go to meetings or see somebody with frequency? How does that work? Yeah,

Kinlee 49:29
I still see a dietitian and a therapist. And I meet with them every other week.

Scott Benner 49:35
Okay. Very cool. Are you um, how did you find the podcast? Like why do you know about this?

Kinlee 49:42
Oh, my mom wasn't do it all the time. She loves this podcast and she told me about it. I listen to it started listening to

Scott Benner 49:52
it. Cool. So do you actually listen or does she listen and bug the crap out of you about it?

Kinlee 49:56
She listened more than I do. But I do Listen. Yeah, I like she always she's like, I went on a walk this morning and I listened to your podcast like, let me tell you what it's about. Oh, and she, she loves it.

Scott Benner 50:09
But yeah. Tell her I said, Hello, thank you.

Kinlee 50:12
I will let her she'll be thrilled.

Scott Benner 50:16
It's funny to me because I don't feel that way. But because like, I know what I'm doing after you and I record. Like, I don't know what your mom thinks happens after I get done doing this, but

Kinlee 50:27
she probably thinks that you go,

Scott Benner 50:30
like getting laid off the road. Yeah, go probably jump in like a gold Mercedes and drive around and talk to like J. Cole and stuff like that. Yeah, none of that happens.

Kinlee 50:40
Oh, we'll just let her continue to believe.

Scott Benner 50:41
Let her have that that fantasy that's good for everyone to think that I'm a very famous and happy person.

Kinlee 50:48
Yes, I agree. I agree.

Scott Benner 50:51
Kinley, tell me about the role of friends in this whole process? did you enlist people to support you? Or do you go by yourself? What happened there?

Kinlee 51:02
Oh, my goodness. I'm just like smiling when you said that, my friends. Were just amazing. And I love my friends so much. And I'm just I'm so happy to be back with them this semester, because I took a semester off of school to go to treatment. And that was a really, really, really tough decision. Because I love college. Like, I just, it is just my thing. I love it so much. And I lived with all of my friends, you know, and I had to leave them all because I couldn't eat, you know. And it was more than that. But like, I would beat myself up a lot about having to leave them. But they were just the most supportive. And I would come home sometimes on the weekends and visit at school. And they would make a point to come and see me and they would text me and call me. And they were just so ready for me to get better. And I'm and it was hard to take the semester off. But I knew it was either stay at school be miserable, get worse. I mean it all honestly possible, honestly, possibly die, or go get better and have an awesome senior year.

Scott Benner 52:09
And you handle it with a lot of honesty. Like guys, I'm leaving for a while I'm gonna go work on my eating disorder. Like that kind of stuff. Yeah,

Kinlee 52:17
I mean, they, they kind of noticed some things. But I didn't really open up about it until like November, December. And I told some of my closest friends kind of what was going on. And then yeah, I was just very honest with them that I needed help. And I needed to go somewhere. And they accepted that they were sad, obviously. But that they saw me they knew that I needed help. And they wanted me to get help. Interesting. And so I went to treatment. And like I said I would visit them we would call you have a talk and it was really hard being away. But they made it easy. They, they just made it. I couldn't have done it without them. I'll be honest. Yeah. Getting to come back this semester. And everyone's like moving in yesterday and today and just getting to see everyone and everyone's just so excited that I'm back. And I'm so excited to be back. It's just I'm really happy that I got treatment when I did.

Speaker 1 53:18
That's a big year for you to tell right? Your senior year. Yeah, it's my senior year.

Scott Benner 53:22
Cool. What are you going to do after school?

Kinlee 53:24
I want to go to grad school is my plan. But I want to be a therapist. That'll take a little bit of schooling. But I want to work with girls with eating disorders. Yeah.

Scott Benner 53:38
This is something you wanted to do prior to all this. Is that right?

Kinlee 53:42
Yeah. Yeah, I've always wanted to be a therapist. My dad is a therapist. And so he kind of inspired me growing up to want to do that. And so and I, I had had friends in high school and a couple in college that had eating disorders. But it's something that you don't really understand until you go through it. Because I remember them telling me things. And I was like, I don't really understand that. But you know, I'm here for you. And looking back. I'm like, oh, that's exactly how I feel, you know. And so I believe as sucky as it was. I believe that I've been given a gift to be able to help other people that deal with the same thing, and maybe not right now just because I am still in recovery. But once I'm done with grad school, I believe that I'll be ready to be able to help other people.

Scott Benner 54:33
Oh, good for you. That's wonderful. Yeah, very nice. Is there anything we haven't talked about that we should have? I don't think so. Did Okay. Excellent. Very nice. What about do you have any other autoimmune issues?

Kinlee 54:50
I do not.

Scott Benner 54:52
How about other type one in your family line on either side? Nope, nothing. About Nothing. Grand moms with tyroid problems. My

Kinlee 55:02
grandma. Yeah, my grandma has a hypo, which was the one. I think it's where it got. There's too much or goes too fast or

Scott Benner 55:10
something hypo and hyperthyroidism. Yeah. Does she have Hashimotos? Do they say? I don't think so. Okay. Yeah, it's not a thing you would really know until this stuff starts to come up. How about anybody have celiac gluten allergy? Oh,

Kinlee 55:26
yeah. My grandma also has celiac. I

Scott Benner 55:28
think we're figuring this out. She's great. Yeah. Give her a call and tell her she might be she might have given you type one diabetes. She's too old. Let her lift. So

Unknown Speaker 55:43
she's so sweet. Yeah, I'm

Scott Benner 55:44
sure. No, it's just you'll often see other autoimmune issues, like somewhere in family lines. Yeah.

Kinlee 55:51
I mean, we have some type two, but there's no type one. Just

Scott Benner 55:55
the celiac and the and the thyroid. Yep. Which are autoimmune. So. Okay, that's interesting. Do you? This is such a weird question, because you're young. But do you think about having kids?

Kinlee 56:07
Yes, I do. Okay.

Scott Benner 56:11
Eventually. Okay. Here's the thing you're interested in doing? Okay. 21. That's how old you are. Right? Yeah. It's weird when the when the thoughts come to people different ages about having kids. It's weird to think about that. Yeah. Right. Because like, Are you dating? No, no,

Kinlee 56:31
I mean, I'm not dating someone right now. Yeah. But I think

Scott Benner 56:35
you're saying you're like, can listen, I've had people. But not at the moment. At that moment. I don't have somebody but like, it's not like I couldn't. And yeah, no, I got you. anybody

Kinlee 56:48
listening? Like no.

Scott Benner 56:51
Don't think that? No, I understood. I understood what you meant. Wow. So like your plan. Just go back. Learn. Hang out with your friends. Have fun. Try to get to grad school. Do you think you'll go to grad school in Tennessee? Or do you think you'll leave? I

Kinlee 57:06
think that I'll go to grad school in Tennessee. Yeah, right now I'm interning at a church in the town next to my college. And I'm the Youth intern there. And so hopefully, maybe at some point that will work out for me to be there while I'm in grad school, or something like that. So I definitely want to have some sort of job either in youth ministry. Or in counseling while I'm in grad school.

Scott Benner 57:37
My son's in Atlanta with his first out of school out of college job. And I'm like, What? What is it? You don't like Atlanta? He goes, Man, it's so hot here. It's so hot and it's so humid. And it is really like it just rains here constantly. Like I know anyway, all right. So you're attending Tennessee girl you want to stay? That's

Unknown Speaker 57:57
fine. Yeah, I would like to stay. I

Scott Benner 57:59
think western Tennessee. Is that like, I don't know the map that well. Ken Lee, I don't know where you're at. Oh, I

Kinlee 58:06
don't either. Oh, whatever you're about to ask me. I probably don't

Scott Benner 58:10
take a look. I was gonna say you're like, more towards I was gonna say Missouri. But am I about right about that, like Arkansas? You don't even know. I love that.

Kinlee 58:26
I don't think that's close to me.

Scott Benner 58:27
Are you? But you're in western Tennessee? Yeah. Closer to Kentucky or closer to

Kinlee 58:33
Mississippi. Closer to Mississippi. I think

Scott Benner 58:37
honey, you're real. You're close to Arkansas. No, I'm not. You gotta get a map and look at it.

Kinlee 58:46
I don't think Arkansas is like four hours away.

Scott Benner 58:48
All right. Okay, that's still that's pretty. I mean, Tennessee is a pretty wide state. I don't know where I am. It just looks like Tennessee looks like I can't describe this to you. Because you're not from around here. But it looks like the way like artists and people cut their pizza in square. It's like long and you would understand. And so but but if you were okay, so you're not if you just went south, just south would you end up in Alabama or Mississippi?

Kinlee 59:15
If I went south, I would end up in Mississippi and then I would end up and

Scott Benner 59:23
I swear you do not understand Do you want to do you have Are you in a phone with me or a computer?

Unknown Speaker 59:28
Computer but I have my phone? Alright,

Scott Benner 59:30
I want you to pull up a US map just go to Google. together and then we're gonna stop. Okay, well, I swear I'll let you out of this in a second. But we got to make it fun for your mom who loves the podcast and is gonna be like, Oh, I love that. He did this to her.

Unknown Speaker 59:42
He's gonna be so embarrassed. Oh, no, no shit. Well, yeah,

Scott Benner 59:45
I mean, listen, she probably could have done a better job teaching you about geography, but that's too late now. Okay, tell me when you have a US map up. Oh, I didn't know. Okay. Seriously, go to a browser type in Google US map. Click on it. Okay. All right.

Kinlee 1:00:00
Oh, wait. It's making me dumb.

Scott Benner 1:00:03
You don't have to download anything. What are you kidding me what's happening? There's a map right at the top when you google US map.

Unknown Speaker 1:00:13
Do you see? When I click it, it makes me download. Oh, you got it? Yeah. All right.

Scott Benner 1:00:20
Do you see now where you're at? In relation to other states? Tennessee?

Kinlee 1:00:28
Yeah, I see Tennessee. Alright, so

Scott Benner 1:00:29
if you're West,

Kinlee 1:00:30
I'm kind of close to Nashville.

Scott Benner 1:00:34
Okay. Oh, really? That. Okay, so that's dead center. Are you more towards the west of Nashville? You are first of all, do you know which way west is left? Do you know never eat shredded wheat? Have you ever heard that? Yes. Okay. So North is at the top and East. Like at three o'clock on the clock. And then south isn't six o'clock.

Kinlee 1:01:01
I'm catching your judgment. All right. All right. So

Scott Benner 1:01:03
are you west of Nashville?

Unknown Speaker 1:01:04
Yep.

Scott Benner 1:01:06
Are you closer to Kentucky or Mississippi? Your mom just died inside. She's on a walk. Think about this. She's out walking right now. She's like, Oh, Kelly went on the podcast. She was talking about her eating disorder. And everything's so cool. She's trying to share with other girls. And now she's at the end and she's like, Oh, my God. Everyone's gonna hear this. And

Kinlee 1:01:30
wait, I'm looking at Kentucky.

Scott Benner 1:01:32
You're closer. No, no. Closer to Mississippi. I think yeah. You see how close you are to Arkansas then. How far are you from Memphis?

Kinlee 1:01:45
Like an hour.

Scott Benner 1:01:45
So you're an hour from Arkansas.

Kinlee 1:01:48
I really just want to tell you where I live.

Scott Benner 1:01:52
Oh, bleep it out. Where do you live?

Unknown Speaker 1:01:53
I live in. Okay, so hold on. I had to get a map. And I'm gonna go

Scott Benner 1:02:03
by the way, Rob, edit out where she lives. Please. I'm not talking to you right now. I'm talking to the person who's going to edit the show. You're welcome. I appreciate I was I was at Tennessee once as a child. Really? Yeah. Or like a vacation. I think we were vacationing I don't know. I was young. They made me go there. I don't get to go to Gatlinburg probably probably went to all the like, you know, you go to the mountains tours traps. Yeah, the Smoky Mountains. Right. That kind of thing. That's in Gatlinburg. Okay, so I see where you are in. Okay. Yeah. i It's possible that if you worked out a little bit, you could throw a ball from where you are at Arkansas. That's the first thing.

Unknown Speaker 1:02:48
I'm not close to Arkansas.

Scott Benner 1:02:50
World. Do you not think you're close to Arkansas?

Kinlee 1:02:54
How close are you thinking that I well?

Scott Benner 1:02:59
I mean, there's like a river. Right.

Unknown Speaker 1:03:06
I'm getting this. Give me a second.

Scott Benner 1:03:09
You are you are? You are closer to Arkansas. If you went dead west than you are to Memphis

Speaker 2 1:03:15
Ah, yes, you are. I go I go through Memphis to get to Arkansas. You

Scott Benner 1:03:22
go through Memphis to go to Arkansas. Yeah, but you don't have to. I'm saying if you if you were to able to drive just do West and not have to follow whatever highway you're accustomed to following? You're like distance wise, closer to the border of Arkansas than you are to Memphis. Well, okay, I think you need to spend at least 20 minutes on Tiktok figuring out where you live. Okay.

Kinlee 1:03:43
I know where I live in. That's all that matters. You should

Scott Benner 1:03:45
go up to girls that you know in like your dorm and go hey, do you know we live near Arkansas? See what they would probably be like

Kinlee 1:03:52
yes. kindling. We do know.

Unknown Speaker 1:03:55
Yeah, really? Okay.

Scott Benner 1:03:56
Can we I appreciate you screwing around with me at the end of this. Thank you very much.

Unknown Speaker 1:04:00
You're welcome. Hold on for me for one second. Okay. Okay.

Scott Benner 1:04:11
I can't stress enough how important it is for you to go to T one D exchange.org/juicebox. and complete the survey. It's super simple to do. I've done it myself took me fewer than 10 minutes. They say on the website, 15 minutes, maybe my clicking fingers faster than some people's. I'm telling you, you're going to do a lot of good. You're going to support the podcast support people with type one diabetes support diabetes research, and you're going to feel good about yourself in just 15 minutes p one D exchange.org/juicebox. A huge thanks to a longtime sponsor touched by type one please check them out on Facebook, Instagram, and at touched by type one.org. If you're looking to support an organization that supporting people with type one diabetes, check out touched by type one 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. If you have type two or pre diabetes, that type two diabetes Pro Tip series from the Juicebox Podcast is exactly what you're looking for. Do you have a friend or a family member who is struggling to understand their type two and how to manage it? This series is for them. seven episodes to get you on track and up to speed. Episode 860 series intro 864 guilt and shame episode 869 medical team 874 fueling plan, Episode 880 diabetes technology episode 85 GLP ones metformin and insulin and an episode 889. We talk about movement. This episode is with me and Jenny Smith. Of course you know Jenny is a Certified diabetes Care and Education Specialist. She's a registered and licensed dietitian and Jenny has had type one diabetes for over 30 years. Too many people don't understand their type two diabetes, and this series aims to fix that. Share it with a friend or get started today. Thank you so much for listening. I'll be back soon with another episode of The Juicebox Podcast. The episode you just heard was professionally edited by wrong way recording. Wrong way recording.com