#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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