#1144 It's Never Sarcoidosis

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

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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
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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

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#1143 Near Arkansas?

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

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

Scott Benner 0:00
Hello friends, welcome to episode 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

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#1142 Preach

Dana is the mother of a 15 year old daughter who was diagnosed with type 1 diabetes just a little over 2 years ago. We talked about food issues and miscommunication at diagnosis, depression, eating disorder and DBT therapy.

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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 1142 of the Juicebox Podcast.

My guest today is the mother of a child living with type one. Our topics are going to include food, depression, eating disorders, and we're going to talk a bit about a really not great diagnosis story. Please don't forget that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan or becoming bold with insulin. When you place your first order for ag one with my link, you'll get five free travel packs and a free year's 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 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. Did you know that men and men of color particularly are the least likely to sign up to participate in research. In order to make advancements in diabetes treatment to address the needs of everyone with diabetes, it is important that all people are represented in research. The T one D exchange is seeking males of all ages and backgrounds to sign up for the T one D exchange registry. Once enrolled, you will be notified about other type one diabetes research opportunities like surveys, focus groups and clinical trials. So if you are a US resident male or the caregiver of a male US resident, the T one D exchange is looking for you t one D exchange.org/juicebox. 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 888721151 for use the link or the number get your free benefits check it get started today with us med this show is sponsored today by the glucagon that my daughter carries G voc hypo pen. Find out more at G voc glucagon.com. Forward slash juicebox

Dana 2:51
Hello, I'm Dana. I am the mother of a type one diabetic. It's our daughter who just turned 15 and will be entering her sophomore year of high school.

Scott Benner 3:01
Okay, your 15 year old daughter was diagnosed with April of 2021.

Dana 3:05
Our first kind of getaway vacation post COVID. Okay,

Scott Benner 3:10
so a little over two years ago. Yes. All right. She's 15. Now you said, yeah, she

Dana 3:15
just turned 15 over the weekend.

Scott Benner 3:17
Was there any indication that diabetes was in your family or that this might happen? No,

Dana 3:22
not really, although Oddly, the great aunt that she's named after. I do remember stories that you know, she takes insulin. But no one ever said she has diabetes or she has type one diabetes, or she has type two diabetes, she would just sit in a chair and drink gin and apparently she had insulin in her refrigerator.

Scott Benner 3:45
You and I are gonna have a lot of fun. I said, Is there any indication that this would happen? You said no. Except for the fact except her diabetes and took it? Yeah,

Dana 3:53
but we don't know if it was type one. I don't know. So long ago, we bought her sugar free candy. And she had she had insulin.

Scott Benner 4:01
Did she mix the candy to the gin? I possible makes it sweeter.

Dana 4:09
Why wouldn't she right? Yeah,

Scott Benner 4:10
I mean, honestly. Okay, so nothing that you were on the lookout for. So what were your indications that your daughter had type one.

Dana 4:19
Nothing was really on the radar. And so we went on this spring break trip in April, and we went down to the Dominican so we live in New England. So of course we've been bundled up, you know, all winter. And come April we go to the Dominican. It's our first getaway after COVID and we see her in a bathing suit and she is skin and bones like every little bit of muscle is off of her and she was a she was an athletic kid with a very solid, just good build, you know? And we start in a bathing suit and there was not much there. It was scary. And my husband actually noticed it first and he said do you think she's too thin? And I didn't even look Got our I just didn't know, kind of like, Oh, can you be to fin and then and then I looked at her and I was like, Oh my God, she's really sick like something stairs going on. And I immediately jumped to she must have an eating disorder. Okay, so we spent that whole vacation like, cramming her full of doughnuts and surely temples and just, you know, me questioning her like, do you ever throw up after you eat? You know, do? Do you ever you know, are you ever hungry and you don't eat and, you know, I was just leaning all into my teenage daughter has an eating disorder. But I do remember laying in bed with her and trying to like, go through the possible list of things that it could be. And she says she remembers me,

Scott Benner 5:48
can I so before we move forward when you were when you were talking to her about like eating disorder stuff, right early on, where you saying to her, I think you have an eating disorder? Are you being very slick and talking about it?

Dana 6:00
Fully remember, I'm pretty direct. So I probably wasn't beating around the bush a lot. I was probably saying, you know, I am concerned that you may have an eating disorder, she

Scott Benner 6:10
respond to that saying I do or I don't.

Dana 6:14
She responded and mom, I promise I don't mom, I promise I don't get sick after I eat. I promise I've been eating. Okay. And then I said, Well, then, you know, then what else could it be? You know, and we're kind of Googling and she says she remembers me saying diabetes. That's one of the possibilities. I don't even remember considering that at the time. But you know, I remember being, you know, in a stall next to her in the bathroom in the Dominican and like looking underneath to see which way her feet were going because I was just so convinced that she was binging and purging or something.

Scott Benner 6:44
Is that something you did as a child? No, no, no. Okay. Yep. From an after school special. You saw like, what do you think put you on that? So probably

Dana 6:55
probably isn't, you know, she was just, you know, she's a string bikini kids. So she's a kid that would have cared about how she hurt her appearance and how she looks then.

Scott Benner 7:04
Did she know she was skinny? Had she like, then tar? Like, it wasn't something she was aware of. Okay,

Dana 7:11
I don't think she picked up on it either. I think it was so gradual. And we were so bundled up over winter. And looking back. I do remember coming down for school one morning, you know, here in the winter, and she had these tiny, tiny leggings on and I thought, wow, she's thin, you know, but I was I was a very skinny teenager. So I just assumed she's a skinny teenager, I was a skinny teenager.

Scott Benner 7:35
Yeah, I gotcha. Okay, so we get to the point where we're now looking into other things. You're just throwing whatever comes to the wall. But I mean, you go to a, do you start thinking about going home? How does that strike you?

Dana 7:47
Well, not really. I mean, she was exhausted, she slept a lot, she did not enjoy the vacation. But we've never thought we need to like get out of here immediately. So we finished the vacation, we came home, I started kind of rummaging through her room a little bit. And I did find a drawer beside her bed that was packed to the gills with food wrappers and juice box wrappers and, you know, things that to me just increased my suspicion that there was some type of binge disorder going on. So I was going to call the pediatrician anyway. But I think I don't know if I found the drawer food first or I called the pediatrician first. I think I think we got home on a weekend and I found the drawer food. And then Monday morning I called the pediatrician and I said, I think you know, our daughter has an eating disorder. And I explained the scenario and they said, I think you're probably right, bring her in Monday morning, we'll probably refer her to the Walden center in Eating Disorder Center up here. And that was the plan. So you know, Monday morning, we packed our bags for school and work. And we had like an ATM appointment with a pediatrician. And we talked for a few minutes, and then they did urine. And I guess her ketones were just spilling over. And her glucose was off the chart. And the pediatrician came back in the room and said I don't know how to tell you this, but your daughter has type one diabetes and you need to go to the hospital immediately. And then I needed to juicebox because I almost passed out. Got a little lightheaded. Did you? I did they laid me down. And then they were like, Okay, now you really need to go to the hospital. Even don't stop for food, don't do anything go straight there. They're waiting for you.

Scott Benner 9:27
You know, in the in the 50s or the 40s they would have said you got the vapors that would have been nice.

Dana 9:33
Even better than crappy juicebox

Scott Benner 9:36
that was very big and black and white movies. They would have sat you down and put a parasol over your head it would have been lovely. Yeah, so you pulled yourself up. And yep, do we drive do we take an ambulance what do we do? We

Dana 9:49
drove we drove wasn't far we drove like 20 minutes to our Children's Hospital. Okay, and they were waiting for her. It was perfect. They just brought her right in. You know she was in TK obviously and And they kept her in the ICU overnight

Scott Benner 10:02
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Dana 13:00
I don't remember that. I remember sitting in the backseat with her but I don't remember everything I said but I do know that, you know eventually at some point I apologized for for missing it because, you know hindsight 2020 All the signs. I mean, I had even taken her for an eye exam because her eye her vision was fuzzy. And you know, we knew that she was chugging water. I mean we all every single possible sign was there.

Scott Benner 13:28
Yeah. Hey, you were in the backseat. Are you a fancy lady? Do you have a driver?

Dana 13:31
I'm not a fancy lady. But I have a husband and he was driving together. Wise all three of your non fancy. Like, oh,

Scott Benner 13:41
look at her. She's in the backseat. Amazing. We're going to the hospital now. Bring this talk, please. Then come back and carry mother to the car. No, how long? Have you guys in the hospital for

Dana 14:01
only a night. I mean, she rebounded pretty quickly. I mean, they didn't start us off in the ICU but they they put us up there hurry when he was high. She was 16.6 and we spent the night in the ICU and the next morning. She was coming around and she was hungry. And I think you know we were waiting forever for them to give her allow her to have some solid foods or applesauce or something I don't remember but um, they discharged just that next afternoon to go to like an off site location about a half an hour away to get our you know, five six hours of education that we probably end up leaving the hospital around one of the next day packed with up a sandwich to to go practice with

Scott Benner 14:46
Wow, that's crazy. Just one day from from what was there anyone see

Dana 14:51
16.6 I

Scott Benner 14:52
don't understand. What did you feel like you got the bum's rush? No, not really.

Dana 14:58
We everybody kind I wanted to get out of there. And she she was, you know, chatty, and, you know, feeling better. So we can, I'm sure, but I didn't feel like we were being rushed out. Did

Scott Benner 15:11
you feel like you understood what you were doing when you left? No, not at all

Dana 15:16
that they sent but but they sent to us for five hours on IG. So that's the deal, like you get discharged at the Children's Hospital. And then you go to, you know, the endo center that's associated with a children's hospital. That's, you know, like about a half an hour away. And they're all there waiting that you know, the team of educators and so it's a whole class that you do immediately before they actually let you go home. I

Scott Benner 15:38
say, like fantasy island when you pull up, there's a bunch of people out front and white coat.

Dana 15:43
There was no red carpet. Well, we had a really dry turkey sandwich in a bag of pretzels.

Scott Benner 15:46
There's no chance anyone listening to this has ever seen Fantasy Island, by the way.

Dana 15:52
There might be some people I don't know. I think we're

Scott Benner 15:55
those of us that have got to be few and far between at this point. Anyway. Okay, so you do your five hours of education. Tell me what that yeah, what that was like to absorb all that? Because that seems like a lot of talking about diabetes on dates. Oh, it

Dana 16:10
was brutal. And I'll tell you, there was a defining moment, I think in that day, that really set her on kind of a sideways course. We have a physically a two diabetes educators, but one was primary. And that, you know, the deal was the hospital packed a lunch for us to take with us to us as the kind of counting carbs exercise. So you know that she's in a wheelchair, they give her a box, like a turkey sandwich and like this tiny, you know, not even the 100 Calorie bag or pretzels, like this tiny little airplane bag of pretzels, and a little bottle of water and she ends up dropping it. And we're like, you know, then we have to wait for them to make her another one. And we felt like finally we're getting out of here. You know, we're headed to the outpatient center. And we have our lunch in front of us and in the girls like now, what do you have for lunch? Like a turkey sandwich and some pretzels. Okay, so the turkey sandwich, let's look it up, how many carbs are in each slice of bread? And you know, she's teaching us how to do the math. And then she said, Okay, know how many carbs are in the bag of pretzels. And maybe it was 12 or something? And then she says, Now, are you going to eat that whole bag of pretzels? And I remember my daughter, I think that can use her name. No one's gonna know who she is. They kind of looked at me like, am I not supposed to eat this whole bag of pretzels? Like, I'm absolutely starving, I haven't had food. I could eat 12 of these bags of pretzels, you know. And so she said to the diabetes educator, maybe I'll eat half. And she was like, okay, so half. So that'll be six carbs. And so we did kind of our carb count. And I just remember Sadie like, almost like the blood draining from her face, you know, like, oh, everything's going to be different. Like, my food is going to be restricted. I'm not going to be able to eat the things I want to eat. Why? Why can't I have the whole bag of pretzels? You know, but we went through the process of, you know, the carb ratios and the correction factors. And you know, of course, we were in di and finger sticks. And you know, you know, I'm

Scott Benner 18:28
gonna stop on this point for a minute, because I'm in the middle right now, of going through this massive document where I'm trying to kind of plan out the next series that Jenny and I are going to do, which is going to be for doctors around diagnosis. Hmm, good. It's just so interesting, because what I keep coming up with over and over again, one of the bigger problems, I don't want to say the biggest problem but one of the bigger problems is that people's communication skills are terrible. Yeah, like just, they're not good at talking. And for me, if I go through the whole rigmarole of them, making me this turkey sandwich or packing this thing up and going through the thing of possible where this is what they're going to use to teach you about the ba ba so it's really important that drop it on the ground. I make me another one. I drive over there. And then I get there and some bright eyed phony lady looks at me and goes so what do we have to lunch? Like? My answer to you is, you know, damn right, well, what's in this bag? Why are you talking to me? Every kid comes here with the mother. Like why are you starting this off on this bowl? Three year old stance is what I would have been my even as a kid I would have been like, no, no, no, it let's not do this. But instead like to me, that's an indicator. It's all fake. And it's pretend and she's going to do the thing. Oh my god. And by the way, the question she asks about the pretzels. She just wants food shaming immediately, immediately. Personally, all the woman wants to do is indicate, look, the bag of pretzels has 12 carbs in it. But if you were just need half of it, that would be six carbs, you would use six, right? So let me explain to everyone listening who doesn't know how to talk, instead of making up a pretend scenario to get your point across, which, by the way, is what most of you passive aggressive people do while you're talking over and over again, just say this. If you're going to eat the entire bag, then give insulin for the carbs for the entire bag. If you think you're not going to eat all of it, then do the math like for say, I don't know, here's half the pretzels take six, or hey, while we're at it, in case you want to know spill the pretzels out for a second look, there's 12 Little pretzels in here. And there's 12 carbs, that must mean that each one of these pretzels is one. So you want nine of them. It's nine carbs, Hey, I'll tell you what, like, if you want eight of them, it's a like you can make your point a different way other than to put your daughter in a false scenario and make her choose. Because this is the possible outcome for some people. Yeah, you put into her head. Oh, am I not supposed to eat all of this? Yeah,

Dana 21:15
immediately felt judged for wanting to eat the whole bag. There was judgment. And just, I guess, you know, almost food shaming, like, well, I guess it would be more of a judgment. You know, she just felt like, I'm not supposed to eat this whole bag of pretzels. You know, and that's kind of how our first grocery store trip when and that that you know that? Sure. That takes us to a whole new problem that we are, you know, had to deal with off

Scott Benner 21:41
a cliff. And my point, my point is, just be direct. And be last. That's all. I am here today to explain to you how to look at carbs on packaging. Yeah, these pretzels, if you eat the whole bag are 12 carbs, D two bags, it's 24 cars, he half a bag, it's six, the sandwich? We don't know because we don't have the package here. So what I'm going to tell you is that a slice of bread is probably around 20 carbs. And you know there's protein in this turkey. We're not going to initially Bolus for it because we think it'll be okay. Because it's a low fat meal. By the way, I'm now giving them credit for understanding fat and protein rises, which I'm sure

Dana 22:23
they did not write right now. But we learned that here. Thank you.

Scott Benner 22:28
And now like, you know, and here we go. And we're going to put the insulin in. And you know what we can eat right away because they wait for it to work and wait for it to work a little bit. So I'll tell you what, why don't we test your blood sugar here, and then we'll put in the insulin based on you know, I'm sure they taught you the math of the correction factor and everything right there. And then pay I'll tell you what, let's wait for 10 minutes and test again, just so you can see that your blood sugar hasn't magically fallen through the floor in 10 minutes. And I've never considered how to teach somebody to do this. And I think that if you gave me three solid minutes to think about it, I could have ended up doing a better job than they did for that song. And that lady stands there all day. And does that for people. Yeah. And she has a really

Dana 23:13
squeaky voice. So it was well then

Scott Benner 23:17
let's drag her out in the street and beat her. No, just kidding.

Dana 23:21
What she should be fired, not

Scott Benner 23:23
very least you don't hire.

Dana 23:24
He was lovely. She was lovely. But she was lovely. And it could have been much better. Right?

Scott Benner 23:30
It's just so listen, my point is this. Obviously no one knows who she is. So whatever. But my point is this is that the way you speak to people needs to be thoughtful. Because everyone's going to absorb these things a different way your daughter took it the way she took it. You might have said that to me. And I might have done the math I might have went okay, what she's saying here is the bags 12. But I paid half I do six which by the way, it makes sense. And I don't really think anyone needs to explain that to me. But I'm glad she said it out loud. I don't know. Like there's just so many opportunities. As I as I like I said go through this document of what people said they wish their doctors would have told them in the beginning that I got feedback from the Facebook group. And then I'm applying what I have learned talking to so many people and trying to I'm trying to build a framework for how to have a conversation about it. And over and over and over and over again. All I see is that people are bad at communicating. Yeah, that's true. Almost every one of the problems could be solved by someone better communication, just doing a better job at that. So anyway, okay, so now we're on our way we're at the grocery store. She's wondering if she could have half of everything like what's going on? Yeah,

Dana 24:46
no, she's we're looking at labels and everything that she wants to eat and she's drawn to, you know, we flip the bag over or the box or whatever, and she's like, Nope, it's not worth a shot, you know, not worth a shot not worth a shot and we end about buying a bunch of really horrible non tasty foods, you know, I mean, we bought like the fake spaghetti like that's like rubber bands and a little bag. I don't even know what all

Scott Benner 25:13
of that spaghetti. So but she's under the impression at this point that she can limit the amount of time she has to do injections. Yes,

Dana 25:20
that that is that is, you know a focus of hers, like, I don't want to have to take, you know, a million shots or get large doses of insulin. So let's try to shop for things that will make this easier. But that's kind of what we walked away with. Yeah,

Scott Benner 25:38
but there she is now 13 years old. And she's standing in a grocery store trying to reimagine everything that she eats.

Dana 25:45
Yes. And she's like, I can't have any of this anymore. It was awful. Yeah,

Scott Benner 25:49
we all know how good kids aren't picking things they want to eat to begin with. So eliminating everything they enjoy, really probably a lot easier. Yeah. Well,

Dana 25:57
it certainly did backfire. No

Scott Benner 26:00
kidding. And on top of all that, and I'm gleaning from your note, you might have been feeling some pressure about this as well. Yeah.

Dana 26:09
Because, you know, I'm the one wants to get this right. You know, and I want to get that a one C. Down. And I want to be, you know, for lack of a better term, kind of the, the control freak or the micromanager, you know, and so, you know, when she would look at the box of, you know, junky cereal, you know, I was gonna write going along with it saying, I don't think that's a good idea. You know, like, I think we should look at keto granola bars. You know, like, I mean, I was definitely part of the problem and that grocery store trip based on kind of my experience in that educational, you know, as well,

Scott Benner 26:55
everyone's freaked out. So you're telling me that it might have been valuable? If someone said to you, listen, yes, you may be making some adjustments to how you eat, but we're not going to make them all today. So don't go to the grocery store and freak yourself out. You know, but I listened even I would say, like, let's not start with Lucky Charms. But like, the way you Bolus for Lucky Charms is not much different than how you're going to Bolus for some really heavy girl like, I don't know, crunchy, like, yeah, healthy cereal either has a ton of carbs in that as well. So yeah, yeah. I mean, it's. And

Dana 27:33
they said, you know, they said in the education, you know, you're not gonna have your Friday night pizza nights anymore. You're not gonna have pasta every Wednesday, like, they were basically telling us, this is going to change the way you eat. So we went to the grocery store with that mentality. You

Scott Benner 27:50
know, what's fascinating about that? Is that again, that's passive aggressive, because these are the same people who meet people every day at their regular appointments, who are coming in there with eight nine a one sees and going, I don't know, my blood sugars are all over the place. I eat pasta. My I don't know. So instead of teaching someone, hey, pasta is going to be a difficult thing to Bolus for. But don't worry, over time, we're going to get your Sass good, we're going to figure it out, you know, like that. It's not going to go likely very well in the beginning. Instead, they tell you, this is so interesting. Everything is set up like this, like the way people avoid things that are hard. Yeah, yeah. Things that are difficult or things that that aren't good for you. Like, here. Here's, here's my best example of this. Do you think drinking to excess is good for people? I do not know. There's an entire billion dollar industry built around it. Here's another one. Dana, do you think cocaine is good for people? I don't think it is. No, you know, we have world wars over the movement of drugs around the planet. It just really surprises me that saying it out loud to someone. Hey, you should really stop with your cocaine. didn't fix it. Yeah. That's yeah, that's amazing to me. Like no more pasta and pizza. Really? You think that did it you got her all straight now good for you. People are idiots. I'm sorry. Yeah, that's all I have. Two days, and I've been going through this document I am so mad at. I'm so upset about the way that this space, tries to address things that by the way, are are very, very manageable. If you understand how your insulin works, like unbelievable that we would jump through all of these hoops and send people down all of these backwards paths in their lives. Instead of just saying, hey, you know pasta is going to take more insulin than Yeah, right says right? Yeah, unbelievable. And

Dana 29:51
there are features like extended Bolus and Temp Basal. So there are strategies that you can use to be able to eat the foods that she as a 13 year old enjoys, you know, yeah, but anyway did it didn't take long, I would say within a month, month and a half she had a binge eating disorder. It was pretty quick. That's pretty

Scott Benner 30:09
quick. Yeah. So, so Is that how that starts, she restricts, restricts, restricts restricts and then can't do

Dana 30:17
it anymore. Awful. Yep. So, you know, she didn't stay out of school long I think she only, you know, we only kept her home for a couple of days. And then we're like, Alright, let's go, we're back at it. So she was back on track, she was back in soccer, you know, back to like walking with her friends after school. And I just remember we would like drive up to Dunkin Donuts, to meet her to give her a shot in the parking lot. So she could, you know, get something at Dunkin with our friends. But it was like, she was diagnosed in April, I would say it was probably May or June, you know, we started picking up on these really, really, really resistant highs. And there were I just felt like I was just pacing the hallway from, you know, to her bedroom pouring insulin on her just, you know, it's so just dumbfounded, like, why can't I get this down what's going on, you know, and she was she would come home from school and grab four or five protein bars and cheese sticks and packs the cookies. And she was binging after school and hiding the wrappers and, you know, wrapping them up in little tissues under her pillow under her bed to avoid injecting, not injecting, she just didn't want to inject. She didn't know then. And you were honestly, we're still kind of dealing with her being in denial of all of this even, you know, over two years later, yes, she, she did not want to deal with it. And she, you know, at that point kind of turned to, to food or, or as a coping mechanism just to kind of feel normal again, I think or to mourn the loss of her normal, quote unquote, normal life prior to diagnosis.

Scott Benner 32:04
You know, it occurs to me, I don't even know that what happened at the education is what did this like, maybe this is just her wiring, this

Dana 32:11
would have happened anyway,

Scott Benner 32:12
I was gonna happen anyway. But it certainly didn't help anything.

Dana 32:15
It didn't help, it didn't help because it, you know, it affected my mindset as well. And you know, and I'm, I'm driving the bus for the most part, you know, I'm, I'm, I'm doing the majority of the grocery shopping and trying to counsel her on, you know, what we're going to eat and how we're going to have for dinner, and you know, what the options are for breakfast, you know, so I was trying to be somewhat low carb and you know, restrict some of these, you know, more typical foods that we had pre diagnosis as well. So, you know, I take, you know, a huge piece of that.

Scott Benner 32:48
I'm gonna take the opposite side of this argument for a second. Because I think that I think that can what can happen sometimes, is that because the, I don't know, the perspective I bring to this is that I'd like people to understand how to use insulin for whatever they're going to eat. Because I don't feel like I can tell the world how to eat, right, like, and bye bye. I could I could stand up and bang a drum if I wanted to. And I could yell and scream and no one would listen to the podcast, and that'd be the end of it. But but I'm not saying I couldn't say it. I'm saying that. I don't think that's how you get through to people. And if you're waking up every day and eating a bowl of Lucky Charms, if you want my personal opinion, take me out of this podcast for a second. I think you're making a health mistake. Yeah, sure. Regardless of your diabetes, no diabetes, I don't even care. Like you could be seven feet tall and look like an Adonis. If you're eating a bowl of cereal every morning, I think you're probably making a long term health mistake that your body is in such good shape and is compensating for in the moment. That's my personal opinion. Okay, now, to say that I won't eat a bowl of cereal this year. I mean, may or may not happen. But if some were to bring like some like crunch Berry, Captain Crunch in here or something like that, I got to think one day around two o'clock in the afternoon in between editing podcasts, I'd might throw a bowl. That can happen to me. Okay, if you put it here, are you asking me if I would buy it? I wouldn't buy it. If it ended up in the house. I would 1,000,000% Eat it. Okay, now, I as a matter of fact, I might be one of those people who like a week from now it's like that whole box at Crunch Berries out that happen. Like, you know, like, I'm not saying that. But if you're using insulin, that's more difficult than if you were to eat something else. And by the way, most low carb people would make the example like you know, in the morning have bacon and eggs because like, who wouldn't get sick every single day. And by the way, nothing over and over again is great. But I mean, for my money. I think bacon's terrific. If you gave it to me three days in a row, I'd be like, Oh, this is crazy. and making me upset. And so like, I couldn't do that either. My point has always been know how insulin works, adapt it to your lifestyle, then once this whole diagnosis periods over and even that you could be years into it, like now you've got managed blood sugar's stability, health on the diabetes side. And now you can address if you want, the way you eat, but trying to trying to on the same day, tell a person, let alone a 13 year old person trying to tell a person, hey, you have an incurable disease, you're gonna have to inject yourself with needles all the time. And bonus, you can't eat any of the food that you enjoy. Well, I don't know, what are we doing? Like? Who thinks that's going to go? Well? Or, you know, and for people who would yell, we'll eat keto, you go grab me 513 year olds off the street? No, don't give them diabetes. Don't tell them their life has just changed. Don't have them start thinking about like the oatmeal man from the commercials and had the diabeetus and oh my god, what am my friends gonna think and blah, blah, blah, I don't want to stick myself to take don't even give them all that. Grab a bunch of 13 year old kids and tell them they're only eating keto from now on, and see if you don't get kicked in the middle of the street by a bunch of 13 year old. Yeah, so I don't understand the thinking. Like, again, I know, I'm not supposed to be shooting heroin. But yet, here we are. And the whole world is shooting heroin. So like, like, like, what are we acting like just telling people the right thing is how is how you fix? It's effective? Yeah, Jesus Christ. Everyone knows that's not right. Right. Like

Dana 36:47
every, but thankfully,

Unknown Speaker 36:50
I will say good, where we

Dana 36:52
did find the podcast early on, like, you know, when I was doing scrolling, the one night in the hospital, I found it somewhere in some thread. So I would say it was I was pretty quick to get, you know, educated on the whole philosophy here of just insulin at the right time, the right amount for the right food, like you know, so it wasn't long in our house until we realized you can have the chicken tenders and french fries. You can have the Chinese food like we can have these normal things on occasion, as we normally would on occasion. And we can Bolus we can do this. You know, we have strategies. We have extended Bolus we have Temp Basal. And so you know, we didn't live in this like hell of like we can only have eggs and you know, rubberband, spaghetti, we that we that that phase was short, thankfully. And we ended up you know, using Jenny did a six month retainer with Jenny, who was absolutely phenomenal. And we learned so much. And you know, really, I was all in on, you know, let's, let's Bolus for fat protein. We do Basal testing, like, you know, I zoned right in on let's let's use these strategies to the best of our ability and allow Sadie to kind of eat what she needs to eat as a teenager wants to eat and it makes us work. But I would say it didn't, it didn't fix what had already started, you know.

Scott Benner 38:27
So, so let's let's kind of get to it. Now she has been diagnosed with depression. Now she has

Dana 38:36
Yeah, so that came a little bit later. So the eat when we found the wrappers, we did go, we did decide to do an eating disorder intake. So during that intake, we learned that Sadie had had some feelings of self harm and suicidal ideation. So that that was news to us, you know, sitting at that intake. So then she was given, essentially, you know, taken her to pediatrician and given a diagnosis of depression as well. So, you know, now and she's got Hashimotos that was given at the hospital. So, you know, now we're looking at type one, how she, you know, binge eating disorder, depression, feelings of self harm, and suicide.

Scott Benner 39:22
Hey, when did they diagnose the Hashimotos in

Dana 39:26
the hospital? That was that was part of what came back and the whole, you know, routine blood work that they did in the hospital, and I have hypothyroidism and so there's my mom. Now, no one's ever checked our antibodies. I would just assume it's probably Hashimotos.

Scott Benner 39:40
But did they start medicating that right away?

Dana 39:43
You know, the doctor offered to and I hadn't looked at the bloodwork enough to think about that for like a week or two. And then I circled back with them and said, Yes, I would like to start

Scott Benner 39:57
that. Okay, I don't want that pretty much yeah. Because depression can be like untreated, thyroid issues could lead to it. Yeah, that's why it was right. Okay. Yeah.

Dana 40:06
No, she started treatment pretty early on with Leivo. Okay,

Scott Benner 40:10
where did they keep her? TSH?

Dana 40:12
They do a pretty good job. Actually. It's always under three. Usually under two. I keep mine under two. Yeah, mine was recently up to nine. I didn't know it in the blood work showed it and he bumped me up and then we rechecked and it was under two. Interesting

Scott Benner 40:24
under two is where I vote. But I interesting about yours jumping up. Arden got home from college. And she didn't seem like herself. Yeah, this last time. And you know, we she was she had been gone for six months. So she was going to that the doctor anyway, when she got home, and her TSH jumped up to over five. Wow. Yeah. So and the doctor was like, Look, I don't think this is a thing where we're going to, like, need to raise up your medication forever. So she did this thing. Like, I don't want to, like tell people like this is not something you should do on your own. But you know, she did some calculations and hit her hard for 10 days with a large a larger dose of something and then put her back to her other thing. I'm okay, you know, and he's a kind of a wizard. So, yeah, we the thyroid stuff. So actually, she has to go back and get another blood draw before she goes back to school to see where we're at. Yeah,

Dana 41:23
see where it is? Yeah.

Scott Benner 41:25
Anyway, what was your symptoms when your TSH I'm

Dana 41:30
done? Never had any I've never had any and neither to my mom. We never gained weight. We never felt tired. We're like wired. 24/7. So, like, if anything, I have trouble relaxing and going to sleep. So you would almost think I have hyper, you know? Well,

Scott Benner 41:45
you're very cocky. So no. And you're from New England. So

Dana 41:51
just adapted very well. I grew up in Virginia, and I went to college in Georgia. I just moved up here for work.

Scott Benner 41:56
Gotcha. I have to tell you that so far. The most surprising thing in this conversation is that the internet exists in New England that I didn't know for sure. Oh, yeah, we got it. Yeah, we sure do. Get the wires to do all the trees.

Dana 42:08
Very consistent. Now. It doesn't always work. Yeah, yeah, I

Scott Benner 42:12
got you. You don't have to. I said you're very Caucasian. When you were like, I'm I'm wired. And I'm like, my DNA back. It's the most boring DNA in the world. I'm just looking at your photo. And like if I went to Google right now and typed in white lady, it's possible you would?

Dana 42:29
Yes. And I was told that I had Native American blood and when I was being raised and why those

Scott Benner 42:35
people idea? Yes. So how do you address when the mental health stuff comes up in the eating disorder intake? How does that all get addressed? So we went

Dana 42:49
on the waitlist for the eating disorder center, because it was like a six month plus waitlist. So we just went to the pediatrician and the pediatrician, thankfully, who's a nurse practitioner, but she's phenomenal, agreed to start her on Zoloft. Because at that point, we were still kind of in COVID. Land, it was nearly impossible to get in with a pediatric psychiatrist. So she started on a low dose 25 milligrams and got us on the waitlist with like an adolescent medicine specialist that was going to be a doctor that could kind of help us with the, the eating disorder, the depression, and maybe kind of the self harm piece. So eventually, when we got on with her, she bumped the dose up. And then it was around that, you know, maybe we were with her for a little while, eventually got in with a psychiatrist.

Scott Benner 43:39
Did she actually hurt herself? Or was she just having thoughts about it?

Dana 43:43
She eventually did. Yeah. So you know, it became very routine that she was very depressed. Not showering, not doing your hair, not putting makeup on not doing your homework, spending time in bed, not wanting to be with friends, which is very different from me. And she prior to diagnosis was the kid and we are the house that has friends over right? The door's always open. The pantry is always full. There's a pool, there's a volleyball net, there's a trampoline. It's the funhouse. Right? So that started to go away, you know, and it felt weird. And Sadie would just spend a lot of time you know, at home alone kind of living in that, that depression and then I being the kind of type a control freak that I am. I have trouble understanding that even though even though I do from an intellectual standpoint, understand that, you know, I still would say things like, Come on, let's get up. Let's go for a walk. Let's, you know, you know, we got to we got to do something, we got to feel better. We got to, we gotta move our bodies, you know, and that was being met with significant resistance. And my husband and I were constantly fighting about it because you know, you She would come home from school and he would be working from home and she would take all these snacks up to a room. And he would be oblivious to it because he was in the office, you know, basically with a headset on working all day. And I was out working all day. And I would just see these blood sugar numbers, you know, 303 50, and I'd be texting, I'm like, more insulin, please. You know what's going on over there, you know, driving them all crazy. And I think, you know, at one point, I guess we kind of reached, we did reach somewhat of a boiling point. And we were like, I think I would be better off if I didn't live here, because you guys are driving me crazy. And I'm driving you crazy. Then I ended up in a hotel for a couple of nights, just to kind of let everybody decompress, maybe and think about what what are we doing here? And what's our goal? And what do we need to do for safety? But you know, I would be, you know, trying to do the Warsaw method, you know, won the fat and protein and my husband is still like, how do I do it Temp Basal. And, you know, I would just get very, very frustrated, you know, you know, I would spend a lot of time talking about the podcast, they were like, Would you shut the EFF up about the podcast? You know, like,

Scott Benner 46:07
I hear that sometimes. So you're in one direction, 1000 miles an hour, and they're in the other direction? Not not moving at all. Right? Exactly. She's not Bolus thing for her food. Your husband doesn't grasp the necessity behind it. How is that possible, by the way,

Dana 46:22
or the complexity? Okay. Yeah, I mean, I understood the necessity of like, okay, if you're going to have a plate of spaghetti, you need the Bolus for it. But just the complexity of what this food means and what this glycemic glycemic index will do. And you know what this cheese is going to do four hours later, and you know, that that just wasn't that just wasn't there for him, you know, and he, he struggled to grasp it, Sadie didn't care, right? You know, she wasn't gonna take the lead with that. And I was all in. So it just created a ton of conflict

Scott Benner 46:57
with your husband, like, before you went to the Marriott. Like, you sit down, you explain, like, hey, her blood sugars are high. This is gonna really hurt her. We're shortening her life significantly, like you say those things. And he goes, what?

Dana 47:14
Um, it basically sounded something like, I know that. And I'm working, I'm in my office, I'm working. I'm on the phone. What do you want me to do? You know, and kind of like you want to you want to deal with it. You work from home, you deal with it? You know? And I'm like, well, the job I had at the time, I was like, I can't work. It's not an option. I'm on the road. I'm in sales. Yeah.

Scott Benner 47:34
But let me let me let me keep going with this. So do you think he really understands what we're talking about? Like, do you think he really understands that she's going to like, not like, she's gonna start losing her vision in her 30s That her like, like her kidneys are gonna stop working, that she's going to have gastroparesis, like, I'm naming a bunch of things that I've had people on here, tell me have happened to them, when they grow up through their teens don't pay attention to their blood sugars and get up in their mid 20s or early 30s. Like, do you think that? Or do you think that he just didn't really think that was going to happen? Because I'm trying to imagine you're still together, right? Yeah, yeah. So I imagine you're married to somebody who hopes and expects your daughter to live a long time to be healthy. So when when people are met with the idea, like I understand the kid, like she's 13, even if it happened to you, and you were blocking it out as an adult, I don't understand that. But the people around you who are adults, who are have been informed. I just don't understand. Like, to me, it's like holding a lighter under your arm, like I get if you're doing it. I don't understand if your dad doesn't swap the lighter out of your hand. That's right,

Dana 48:45
right. Yeah. And I think, you know, it's still a little bit of that, well, it's not gonna happen to her or it's not that bad. Or, you know, she's a teenager and teenagers are going to go through, you know, difficult periods. And this is still new, you know, just a lot of kind of excuses. Meanwhile, really, her agency had gotten quite good. Okay. Because I was the insulin. I mean, I drove everyone crazy, but I got her down to a 6.1 you know, pretty quickly.

Scott Benner 49:18
Yeah, you're running around like crazy yelling Bolus every five seconds crazy.

Dana 49:22
Yeah. Crazy. Night crazy all day. Crazy out of the house. Crazy. Yes. Yeah.

Scott Benner 49:27
So you're holding, you're propping up the whole thing?

Dana 49:30
Yes. And it was terrible. Sure. For everyone.

Scott Benner 49:35
No, I for different reasons.

Dana 49:36
Yeah. And then I will say like, you know, my, you know, I would just be full of a lot of rage and anger because I felt like I was kind of trying to do all this on my own.

Scott Benner 49:48
No one's listening. No one seems to care as much as you do. The pressure of her staying alive and healthy, false solely on you because nobody else is paying attention to it. Like that kind of stuff. That's how it felt you Oh,

Dana 50:01
gotcha. And then she started cutting.

Scott Benner 50:03
Perfect. Yeah, you were probably like, I don't know why I didn't know what I was doing before. Now I really don't know. Yeah. Now we got more problems. I mean, the six month waiting list, by the way for the eating disorder centers. I mean, confusing. I understand how it happens. But I mean, again, it's like calling the fire department being like, my house is on fire. Like we have a slot for you. And I know you're gonna, on Tuesday, do you? Would you prefer if we came in April or May? Because I can do the third week of April, the second week of May you let us know?

Dana 50:36
Yeah, it was that bad. And it was still virtual only and she was just like, forget it. I will zone out. 100%. Don't even put me in there. You know. So we actually never did it. We found other resources. Okay, but we did not go into that program. Where

Scott Benner 50:54
are we right now, Dana? Like how do things stand today? Right now we

Dana 50:59
are in a DBT Dialectical Behavioral Therapy program. With a psychological group that's about an hour away from us, we started there at the advice of her psychiatrist. Because the multiple things right the eating disorder, the self harm, the binge eating, and then what we didn't touch on, but just briefly, a loss of friendships, she really lost her friends. And she started going down with the wrong crowd. So much so that we changed her school, so that the psychiatrist looks at us at our second visit, and said, I think you need DBT therapy. And DBT is there to kind of help with emotion regulation. And really, apparently, it's shown to be effective for many of these things, self harm, eating disorders, not type one diabetes, but you know, all the emotional stuff that she was also dealing with. So we are deep into that program they have, we have a group every Tuesday night for an hour and a half. She's in a group of teens, we're in a group of parents, and then she has a one on one with her therapist on Thursdays. And I think that we don't get a lot of feedback from the therapists because there's a lot of they do keep things very confidential between Sadie and her, her therapist, but we can tell that there's the disordered eating is a lot better. We're not fighting, you know, I'm not fighting highs all night that I can't explain. I'm not finding rappers in a room. For the most part. Now I do occasionally. But for the most part, that's a lot better. We're not seeing cutting if it's happening. I'm I'm just not aware of it. But when I have, you know, I'm told that that's better. So that program is going to be coming to a close in about five weeks.

Scott Benner 52:50
Because she's graduating or because they're moving out of town.

Dana 52:53
It's it's it'll be the end of the program. It'll be graduation for all the teams. However, they did spring on us yesterday that she's not really ready to graduate. And they want us to keep her in what they call the grad group. So kids that have completed the program, but still need need to be in the program, essentially.

Scott Benner 53:11
Can I ask, is there any indication of these ideas? If she doesn't get diagnosed with diabetes? Did you see her I know, it's tough because she was just 13. But were we moving in this direction?

Dana 53:22
I don't think so. No, I really don't. I mean, she had such a fun adolescence, so many friends so active, you know, sports, and they would get on their bikes and ride down to the river. And they would have, you know, swim parties here late at night and sleepovers. And she would get invited to do things. I mean, all that neck came to a grinding halt. She hasn't she didn't get was I didn't do anything. Do

Scott Benner 53:49
you think she's changed in a way that other people are like, I don't want her around? Or do you think? Okay,

Dana 53:55
sadly, sadly, I do. Yeah. Yeah. Because I think she's, she's, she's pissed. And I think she has lashed out at friends. And she's also very much still in denial of her diagnosis. So, you know, we still struggle a lot with her novels before she eats. You know, we're about to send her back to school and sports. And she's 15 she's going to be a sophomore. We're not sure we can have the doctor write up the orders to make her independent at school. Because last year, we tried that. As a freshman, we thought okay, freshman she she can be independent. She can Bolus before her lunch. That's what she wanted. But the endo thought was appropriate. And within a few months, it was it had gone sideways like I you know, we see our numbers get up over 300 You know, practically daily. So we changed the order, so she had to go to the school nurse but then she still wouldn't go or they snack and not have insulin. We'd have to call the school nurse three, four times a day every day. Please Just call her down. She needs insulin, please call her down, you know? And so we're, we still haven't we're not we're really not much of a better place for that.

Scott Benner 55:07
Yeah. Do you have other kids? Yes, the neglected

Dana 55:10
one, Charlotte, she's turning 13

Scott Benner 55:16
I was gonna ask what it's been like for her as well,

Dana 55:18
often, because he's a worrier. So she worries about safety. And she feels left out a lot. We've spent so much time and energy and focus on safety, all these appointments and these therapy programs and just that's been so consuming, that, you know, he or she has, like, could somebody just play Uno with me, you know, with somebody just like, um, read a book with me, you know, it, like my heartbreaks for her because she was, so she was, you know, 11 when this happened, and her life got turned upside down to

Scott Benner 56:01
Yeah, so yeah, that's terrible. I'm sorry, awesome. Stress for her. How are you? Okay, thanks. That's not sound very

Dana 56:14
just kind of charge on. Yeah. Wow.

Scott Benner 56:16
It's a lot. I'd go back to the hotel if I was you.

Dana 56:21
I'm doing Monday night, but they're coming with me do it.

Scott Benner 56:25
Do you see a path out of this yet? Or is it not obvious yet?

Dana 56:30
My hope is the path out of this is through this DBT work that we're doing. They it is a phenomenal group of psychologists. Additionally, Sadie's going through a battery of testing right now for ADHD, OCD, learning disorders. And I suspect that they will pick up on something, it's possible that if she has ADHD that is contributing to forgetting to Bolus there, you know, there could be something else going on. It's not just Sadie being negligent, you know. But, you know, we had a terrible school year last year in terms of the homework not getting done. And I forgot that I forgot this. No, I forgot that. She plays sports, but she wouldn't pay attention to her blood sugar. So, you know, she'd be on the court at 300. Or she'd be on the court at 50. You know, she, she doesn't, did not and, um, I fear this year, she still will not want to deal with it enough to manage it through another sports season. Okay.

Scott Benner 57:36
So we got a couple of things going on. You're worried she's gonna start playing sports, too? Well, she,

Dana 57:41
she loves volleyball. So I don't think that she would make an active decision to not want to play. But I think if she doesn't get a handle on how to manage this through the season, the coach can't rely on her inner team can't rely on her. She's of no help to them if her blood sugar is 300 or 50.

Scott Benner 58:02
I have a question. So how does she manage? What is she using?

Dana 58:06
Oh, she's on the Omnipod five. And we recently switched to the G seven. We actually have a couple of G sixes left. But we recently switched to the G seven just to try a smaller device for her because she is so self conscious. And she wants to hide it all and you know, the closed loop? I guess, you know, everything would every alarm would go off when she would get an urgent low and any little beep and barristers are in a little clique associated with the micro Bolus was embarrassing when she was in class. So anyway, moving over to the g7. She actually surprisingly wants to go back to the GS six, but that's how we manage

Scott Benner 58:41
Hold on a second. You're not using Omnipod five, but G seven. They don't work together yet. So well.

Dana 58:46
We they're both attached to her body. But it's obviously it's it's not a loop. We're in manual mode.

Scott Benner 58:51
So you're wearing it on the five five running it in manual while she's doing g7. But she does she missed the automation. Do you think?

Dana 58:59
I think a little bit a little bit. Yeah, I think we'll probably let this g7 script run out and go back to the G six. Because yeah, it was certainly a little bit handier for like going into activity mode. And it could certainly tackle the rise from you know, ice cream or a cheese stick or something, you know, so it did help in certain aspects that I was up three times last night given her corrections that I wouldn't have had to do if she was on the G six.

Scott Benner 59:27
What's her agency

Dana 59:29
right now? 6.2 So it's been as low as five eight, but

Scott Benner 59:32
you're but you're constantly involved.

Dana 59:35
I'm crazy. Yes. 100% Yes. And

Scott Benner 59:38
what's your standard deviation? Is that bouncing Is it high? Oh,

Dana 59:43
I wish I had repeating me in front of me. Yeah, it's it bounces a lot. It's probably 3540 Like if we if we let her contract like sleepover with friends for birthday 350 overnight, they just had a bunch of candy and didn't do anything. You know, she was a forage camp and they had a bunch of candy are constantly over 300. So if if I wasn't the crazy person on the sidelines trying to correct everything, day one C would be so horrendous.

Scott Benner 1:00:11
Listen, I'm gonna I'm gonna ask you a question. Did you listen to the episode about the eyelet? Yeah, okay. Oh,

Dana 1:00:17
yeah, I was totally on top of that. I saw the news. But you know, before you got him on, we would never go to a two pump.

Scott Benner 1:00:26
Okay, so the tubing would be the issue for her. But would ya to take a break for a second? If you told her look, all you have to do is say, large meal, medium meal, small meal. would she do that? Or you think she probably wouldn't do that either.

Dana 1:00:40
We talked about it yesterday morning, I think there's a good chance she wouldn't do that either. Because it's still just changing gears, you know, and admitting that you have to deal with something that you don't want to deal with.

Scott Benner 1:00:52
I think there's just a large interesting piece

Dana 1:00:54
of denial though, going on there. It's just it her preference would be to avoid this and pretend it's not there.

Scott Benner 1:01:02
Okay. No, I completely understand. Okay. So Dana, I think we've done a good job of going through all of this. I'm going to try to end on an upbeat note. Okay, what did you tell me right before we started recording?

Dana 1:01:16
Oh, that I'm the main person that's responsible for getting rid of talking about religion on the Facebook page.

Scott Benner 1:01:22
So the Facebook page now has had a rule for like, I don't know how long now that just says it says no religion or politics. Right. That's it right. And well, yeah. And I, by the way, I don't really stop people from talking about stuff. It's just that if it gets out of hand, I can point to that. I can point to that rule as to why I have to shut the thread off. If it happens. It doesn't happen very often. But I don't remember what you're talking about. So can you please, like, relive it with me?

Dana 1:01:50
Yeah. Well, there's, I remember there being a political post one time and I comments. And I was like, Hey, I thought we were going to talk about politics. And, and then it occurred to me then I was like, that's funny. We have no politics rule, but we don't have no religion rule. But I didn't really think much of it. And then one day, there was one of these posts. And it was lovely, but it was all like, Thank God, or thank Jesus, you know, my son is alive or my daughter's, you know, if it weren't for God, or Jesus, I wouldn't, you know, unlike unlike, and then I just wanted to, I think we have should have a no religion rule, in addition to the no politics rule. And then you actually commented and respectfully, they and I disagree, because faith is a large part of people's lives. And I shut up I didn't, I didn't, I didn't say another word on the whole thread. But my philosophy was, or maybe I did comment on one person on the front, because my philosophy was mechanically, your faith has nothing to do with blood sugar. Mechanically speaking. It's it doesn't it does not play a role. Your faith may be important to you, but this is about managing blood sugar and working with insulin. And I don't know sometimes I just religion just is a turn off for me. Personally, just,

I'm not a non religious person. Don't get me wrong. She got my daughter to go to a Catholic school. We are not anti religion.

Scott Benner 1:03:15
I want to just tell you, Dana, I know you're a Catholic, even though I never asked you but go ahead.

Dana 1:03:20
Catholic, Protestant, my husband was raised Catholic.

Scott Benner 1:03:23
Somebody is it? I could tell for sure. But yeah, but so Okay, so here's my thought on it. Yeah, I, I don't just not have a problem with it. I'm completely unencumbered by the thing that you're upset by. So if somebody if somebody wants to say, I pray that this happens, or I want to thank Jesus for like, I not only do I not have a problem with it, it doesn't. I don't rub up against it at all, like so it doesn't make me upset. I wonder what but it did you and it does for other people as well. Yeah. And I think I think that if I'm paying attention correctly, it is really the difference between the brain that says that there's a higher power and the brain that says that there's not a higher power, and for the people who say that that's not in existence. Then when you say things like I need help with my health, or I hope this blood sugar I praying with this blood sugar comes down your brain goes don't pray Bolus. And by the way, my brain says that to my brain says don't pray Bolus, but I also am not upset that they're praying for it. I would just say, Hey,

Dana 1:04:32
I am not either. And listen, somebody asked me to pray for their dog the other day and I told them, I would pray for their dog. I'm not anti prayer.

Scott Benner 1:04:39
Do you know let me go with you on that for a second. I would not do that. If you asked me to pray for you. Well, I do love dogs. No, no, it's not the dog park. at the dog park, if you said to me, can you please pray for whatever I would say I will absolutely keep a good thought for you. And I

Dana 1:04:58
generally say I I will send my goodbyes I really do generally. And

Scott Benner 1:05:02
I would honestly throughout the day think about you. Oh, yeah, but I would say my goodbyes, right. But that that request wouldn't send me into a private room bedside, where I would decide that I'm going to pray for the dog. Wherever we

Dana 1:05:18
disclose. I did not pray for the dog. The dog, my good dude, I sent the dog my good

Scott Benner 1:05:25
lady that you would pray for her dog. Is that right? I did. Yeah. I hope she hears this. I hope one day she goes, Oh, my God, I was I really I thought that's why that dog lived.

Dana 1:05:37
Here. No, I just, you know, I find a lot of religion to just be a little bit. What's the word? It's like? I don't know, the the overall the the I don't know that. Some people are just so focused on religion that I feel like some things aren't very genuine and kind of underneath. Why does

Scott Benner 1:05:58
that? Why does that matter to you? Because because there are people like, I'm not saying that. There's not genuine or kind. I'm saying that if that's your assessment, there are other people who you would assess that way who aren't religious? Why does it matter? When it comes from religion? Something happened to you when you were young, they turned you off?

Dana 1:06:16
Well, I would say that nothing specific happened to me, I was young. I mean, I was raised in a church that didn't have a bad experience or anything. I just find that some of the people that proclaim to be followers of Jesus followers of Christ, are some of the more judgmental closed minded people that I have ever encountered.

Scott Benner 1:06:35
Well, I don't know about that. But they do have a lot of rules they're trying to follow. So

Dana 1:06:39
just something rubs me the wrong way. And there are people within my own family that, you know, proclaim to be, you know, followers of Jesus and born again. And you know, they go to church every Sunday, they wouldn't stop and buy a sandwich for a homeless person, they would say, why does that homeless person have a cell phone? You know, there's judgment. So

Scott Benner 1:07:00
Dana, we're getting to it. So in your personal life, you know, people who proclaim religion, but are not very religious minded.

Dana 1:07:07
They're not very good people. When it comes down to

Scott Benner 1:07:10
it. Oh, yeah. So that's been your experience. Yeah, that's in that is my bias, right to call it colors that you think about. But now, extrapolate that all out. And put me put yourself in the position of me, who is running a Facebook group with 40,000 people in it? I don't care about I have some regret after I made it. I don't care about what you saw your uncle do. Okay. Or, or your biases, I don't care about them, just like I don't care about the other ones. You have to understand that, from my perspective, it doesn't matter. If Jesus is a walking talking person living in a cloud, or if it's a Buddha Meister that somebody made up 4000 years ago, I honestly don't care. I'm running a place where both people, right. And their beliefs exist at the same time. And so it doesn't matter to me, if you say, like, we just had a situation the other day situation made it sound like a lot more than it was. But somebody said, I'm praying for this. And a person came in and was like, there's no religion in this group. Like didn't just say it, they dropped a photo of the of the rose, like, oh, that person's looking for a fight. So I step in, and I remove his comment. And I sent him a private note. And I'm like, Look, I don't know what you're doing here. But stop. Like, that's literally what I said. So then I had a private back and forth with that person, where they said, I'm just going through a lot right now. I have a couple of family members with health issues. I'm stretched too thin. And in all honesty, I got online to get posts to make myself feel better. And I feel bad about that. I'm sorry. Right. So that's mostly my consideration when I'm moderating is that even the day that you did it? Something was and listen, you just spent an hour explaining in a way that I think everyone listening could understand if you were having a bad day, and you wanted to go pick something that you were sure you were right about to feel good about for a second. That's my anticipation when I see that I don't think anyone is a bad person. Like I don't think people set out to harm people. I think I think that people get in bad situations, they have bad days, they have bad days to turn into bad weeks, they need a release, and they pick something where they can kind of just get it out a little bit. And I think that happens online a lot. And so it's my it's my job to step up and go, ah, doesn't matter to me. Like yeah, you can't say that to her. And, and so I'm not going to let you I don't and people are like, well, you agree with her? Not me. I'm like if you're confused. I don't give a flying fuck about either your opinions. I'm not friends. You're misunderstanding my job. I'm moderating the space. I'm not making it. argument about whether you're right or they're right, I couldn't possibly care less. Although I do care when people use that phrase wrong when they say I couldn't care less. Or I could care less if you say I could care less than you actually could do less. So the phrase is I couldn't care less, which means I care so little. There's nothing below that. Anyway, nothing left. Here's my sound. That's my, my language.

Dana 1:10:31
About like, praying. There's just that that one and egg issue, right. It was like at the right moment, the right time. It was a very knee jerk react response on my part, but I don't go down that I do not go down the thread and have comments and get roped into any drama whatsoever. But I see that stuff all the time. And I don't I don't say anything. Because, you know, reality is people having faith and religion in their life doesn't offend me. Yeah, you know, that particular one was just like, I was just kind of like, I had to like, Are you kidding me? response.

Scott Benner 1:11:05
So I don't remember the context of it. But I'm going to read you something that is going to just, I assume crack you up. And I hope give everybody a lot of respect for people who do this thing of helping people online and moderating spaces. Let me see if I can follow me. And if I don't find this, I'm going to be embarrassed Hold on a second. I got yelled at pretty good online the other day privately. It's more fun when they yell at me privately. I'm super excited about that when that happened. And DM Oh, yeah, yeah. So hold on. A roll. No, do you? Oh, here it is. Okay. So a person doesn't matter what the context was online, was being an asshole. Now I can see, they don't think they're being alright. And that's fine. But they are they're picking through a thread and jabbing at people and trying to cause problems. And I let them be themselves. But when they were unkind, I took out their phrase. So their their comment, honestly, there's a ton of rules on the Facebook group, because people's behavior precipitates them being necessary. But if it was up to me, the only rule on the group would say be kind, because I think I think I think it covers everything. Yeah. So I get a note from this person that says, I want to tell you that I was being nice. And I was being exactly how I would like to be treated. If I said something that was getting ignorant. Oh,

Dana 1:12:45
I just lost your nice,

Scott Benner 1:12:47
because then I meant to be called out. Just because culture is this way for this person doesn't mean that the rest of us have to believe it. Or that it's right. But also don't generalize and but and it goes online. And then at the end, this is really my favorite thing. Except Hold on. There's a thing going by my house is gonna be the end of the world. What in the hell?

Dana 1:13:11
No flying your plane.

Scott Benner 1:13:12
This is the last recording of Scott Benner. I want to say goodbye to everybody. I love cheese house. Thank you all for coming. Okay, so but at the end, I won't be recommending anyone else to this group. I'll let them know that they don't have freedom of speech. So anyway, I could pick through this if you want me to people don't understand what freedom is. There's a lot going on here. Right? So I respond back. And I say first of all the same thing. I always say when somebody DMS me now let's be clear, other people would block you. And that would be the end of it. Not me. I feel like I can get you back. I don't have these conversations in private, because in the past, people will screenshot what I've said and change it and then reshare it. I understand you don't agree. I am moderating a large group. It is a job you don't want trust me. I removed a few of your posts and simply asked you to be nice. Two hours later, I came back and you're telling someone that anyway, then she did it again. I don't want to be too specific. Yeah, I said, so. Two things. I have a life and can't do this all day long. And what you just did is under no interpretation. Nice. So I asked you to be nice. And then you came back and you did it again. Your account was suspended for three days. I hope you come back when this is over. Have a good evening. I want to be done. But I can't be done. Because I get a response. Well, well, you stopped me from posting. So I can't post it there, which is why I'm sending this to you. And I said well, yes I did that because you continue to be unkind. I was trying to be kind by explaining to you that I don't normally talk privately, but then I went on to explain anyway. All right. I hope you have a good night. I also have a king right to say something that Ticknor. But it's okay that your admins continue to comment on my stuff, and will not. So by the way, there are other people trying to stop her from being a lunatic, like, kindly and she sees us as being attacked. Now, I say those people are not admins. They're just lovely people who lose links for people to try to help them find the podcast. I said, By the way, they're also people and they have their own opinions. I also deleted them, because when I deleted her thing, it all deleted out right away. I said, But now here we are in line and you're cursing at me. What should I do about that? Should I keep talking to a faceless person who is yelling at me about comments on a message? Right? Please just say goodnight. I think if time passes, this will all go away. And we'll be okay. Thank you. Now, here's where I feel amazing. Scott, I apologized for my actions to you. I apologize for cursing at you. And I'm like, I read those two sentences like I am making the world a better place. But I will. But I will not apologize for stating my opinion. Just say you're sorry, and good night, right? I will not tolerate being attacked because of my opinion. I apologize to you for your pod. Now, here's the part that starts freaking me out. Because your podcast has been a godsend. And I'm like, so for everybody listening. If you want to know what's really going through my head, while this is happening, I'm thinking one thing. Just say thank you. Leave me the fuck alone. Like, that's all I'm thinking. But

Dana 1:16:46
the content, be grateful and leave your drama at home.

Scott Benner 1:16:50
For me personally, but as a person who does this, honestly, this is terrific. It's a great back, she says the please have a wonderful and safe weekend. Thank you for your group and your podcasts. I really am sorry, again, this is not my character. And I said there's no need to apologize. But thank you. I also hope you have a terrific weekend. And that's going to it for that person hears this, please don't be embarrassed, like you're the only one who knows it's you. But don't be embarrassed. This is a great example of what we were talking about earlier, which is just you get into a bad spot, you don't realize you're in a bad spot. You start like lashing out at everybody looking for someone who's wronger than you are I know that's not English, right? So that you can feel better for a couple of minutes. And then you ran run into me, a person who doesn't want you to go, I know the podcast is valuable for you. And the space is valuable for you that you're going to get past this moment. And that we're going to all be okay again, because I've seen it happen over and over again. I don't want anybody to lose out on the podcast. So I try to work through these situations. But it's just, I could see how this was going the entire time. Like I've been through this so many times, I actually know where this is going to end. And they don't and that's fine. I was wondering. Anyway, I just thought that was interesting to bring up I hope that you find yourself in a similar situation with your problems at home. Because I think that if you stay on this path, I think you can get your daughter through all this. You know it you just have to be able to like, believe me that I've heard your story before and that people who who manage it and stay on top of it. You come out on the other side who usually sometimes end up coming out the other side. Okay, so yeah. Anyway, it's hard to see in the moment. It's one of those contextual things like you have to interview a bunch of 60 year old people who tell you horror stories from when they were teens to feel a little bit better. Yeah, yeah, to realize that there's no that it might be okay. Yeah, it could end up being okay. I'm not dismissing it to it. Also. You know, I'm not, I don't think I'd be blown sunshine up. Like this could go really bad too. But of course, yeah.

Dana 1:18:57
But I feel like, you know, there's, you know, some comfort in knowing that we're trying all the all the things that we're trying are the right things. Yeah.

Scott Benner 1:19:08
And it sounds like your husband is going to the therapy for the parents as well. Yes. Yeah. Oh, yeah. Yeah, yes. So he's getting it too. Yeah, it's tough with the voice because even as we get older, we're just like, 12 in our heads. So you're trying to get us to do stuff. And we're just like, I hope we can have sex and, and football starting again. Yeah. Like three thoughts.

Speaker 1 1:19:33
Anyway, is there anything that we didn't talk about that we should have? No, we did it actually covered it. Yeah, there's a lot of I let me just apologize to Rob who does the editing now about all the cursing?

Dana 1:19:44
Oh, yeah, I'm gonna put emails too but you were you were

Scott Benner 1:19:49
up upset going through this document for the new lead, because again, it's if you are in my position and And my position is a unique one, I guess for having had so many conversations with so many different age people who have been diagnosed and gone through so many different things, different ages, blah, blah, blah. Like it all, it's so obvious, so frustrating and frustrating. It's so frustrating that you left a children's hospital went to this thing that they have completely set up. And in minute one we're on are on the wrong direction. Like it's just that's so upsetting, you know? Well,

Dana 1:20:27
I hope the document that you create gets utilized. You know,

Scott Benner 1:20:31
it's gonna be a series that Jenny I make. Oh, awesome. Okay, good. That's right. geared towards providers. I saw your post. Yeah, I'm gonna call it grand rounds or something. I don't know exactly what it's called. Yeah, perfect. Yeah. But Jenny and I are gonna go through from people's, we're going to lay out our thoughts. We're going to use the feedback that we got from the Facebook group, which I guess after you just heard that story, you're probably like great lunatics, but they're not. They're all really lovely people who have great perspectives of their own. And I do think

Dana 1:21:03
I'll recommend, I'm going to recommend it to my Well,

Scott Benner 1:21:06
let me get it out first, and you listen to it. Yeah. Just think. And then, if you like it and tell people about that'd be terrific. All right. Dana, thank you so much. I really appreciate it. Thank you. Thanks. All righty. Hey, before I say goodbye. Are you really certain about having Sadie's name in this? You're okay with that?

Dana 1:21:22
Yeah, that's okay. There's not much to uncover or find there. Okay, fine. All right. Yeah, for me.

Scott Benner 1:21:36
Huge thank you to one of today's sponsors, G voc glucagon. Find out more about Chivo Capo pen at G voc glucagon.com. Forward slash juicebox. You spell that g v o OKEGLUC. Ag o n.com. Forward slash juicebox. A huge thanks to us Matt 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. 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

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