June 20, 2025 • 36 mins
Welcome to Chronically The Sickest - the sickest podcast you know.
On today’s episode I’m joined by outdoorsman, Jon.
We get into accessible adventures, medical debt, and how to make the most of chronic illness.
Follow Jon's nonprofit here!
Find this podcast on Instagram
@chronicallythesickest_podcast
@chronicallythesickestpod on Tiktok
SUBSCRIBE TO THE PATREON
For only $1 a month you get unfiltered episodes and bonus content with your favorite guests.
BECOME A GUEST and get free merch from UnifiedByDesign
Shop INVISIWEAR and get 10% OFF with code SICKEST www.invisawear.kckb.st/sickest
Shop Belly Brand Foods and get 20% OFF with code SICKEST www.bellybrandfoods.com
Shop BRAINZYME and get 10% off with code SICKEST10 www.brainzyme.us
Rate the podcast on Spotify, Amazon Music and iHeartRadio - your feedback matters.
Feel free to shoot me a DM if you have any questions or if you just want to chat. I’m wishing you a low pain day. ‘Catch you next week!
Mark as Played
Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:04):
Hello folks, and welcome to Chronically the Sickest, the
podcast where we talk about all things that make us chronically
the sickest people we know. I'm Clark, your host.
It's nice to chat with you this week.
Join us as we dive into the episode, sit back, relax, and
enjoy the show. Welcome, John, to Chronically
(00:34):
the Sickest podcast. How are you doing?
Thank you. Thanks for having me doing
fantastic. Oh good.
Wow, fantastic. What a great way to answer that.
But for the listeners who don't know you, can you tell us about
yourself? Yeah.
So Jonathan, I'm a father of three.
I always say I'm a professional volunteer.
So my wife and I cofounded A chronic illness focused
(00:55):
nonprofit a number of years ago,also just active in our
community. So that kind of in addition to
obviously being chronically I'll.
Of course, that's basically a job and a hobby.
Got it. Yes, very much so.
OK, I love that. So, OK, so you have your
(01:16):
nonprofit, you have your family,of course, and your nonprofit,
it's like focused on being in nature, is it not?
Yeah, So we, we started Evergreen Adventures after my
colectomy. So I had my colon completely
removed coming up on three yearsand we're in a rural area in
Montana. And I was just seeking to
(01:39):
connect with others. And while there are obviously
support groups and different options out there across the
state of Montana, I wanted to find other ways to connect with
people. And the outdoors is something
that's always been really important to me, even before my
litany of of health challenges. So we, for years we talked about
(02:01):
how can we try to provide some support to the chronic illness
community and going through that, the surgery, the having my
colon removed kind of identifiedhere.
Here's a chance to, to do it because so many of us in the
chronic illness community want to be outside.
We want to go have coffee with our friends.
(02:21):
And it may not always be understood of, well, either I
can't or hey, I can go have coffee for 5 minutes or I, I
can't go on a 10 mile hike, but I can go on a 5 minute hike.
And so 5 minutes is better than 0.
And that's really kind of how things started snowballing.
And it was actually after a session with my counselor, a
(02:43):
local mental health professional, that I would
always walk or run to my sessions with her.
And as a way to just sort of decompressing, you know, kind of
switch gears back from, you know, back into, you know,
family and parenthood. So it was actually during that
after a session that that I thought, all right, let's do
this. And you, I, I have a background
(03:05):
in communications, so you'd think I'd have like a plan and
really organized. And my wife said, all right,
great, let's sit down, let's come up with a five year plan.
And I said, Nah, the paperwork'salready filed.
Like we're we're moving forward.So yeah, it didn't really didn't
wait. Got it.
Well, it is definitely one of those ideas it sounds like for
you that you thought about for awhile and then just kind of like
(03:28):
pulled the trigger on it. So it's like there was almost
like no planning in the plan. Yeah, you know, that's that's a
great way to find out like that.I'll have to save that.
Hey, I do agree with your wife though, there is a lot of
planning that needs to go into stuff like this but.
Yes, yeah, we're, we're doing, we're we're catching up.
Yes, yeah, OK, that's so amazing.
(03:49):
And I love that approach to being like, I can't do something
maybe for an hour, but I can do it for 5 minutes and that's,
that's enough to be able to be like, I can go outside.
There's, I just, I feel like there's a lot of, well, there's
a lot of pressure on us right within the chronic illness
community of, of your diagnosis or of how you're treating it or
(04:12):
the things you should or shouldn't do.
I feel like there's just a lot of, for me at least, there's a
lot of self reflection, questioning sort of how I'm
doing things at at times, how I'm managing my illness.
And the the last thing I wanted to do was tell someone how they
should be acting or tell someoneyou should be doing X amount of
(04:35):
miles. And again, there's a lot of
pressure in the outdoor community of unless you're doing
30 miles and 50,000 vertical like you're nothing.
And that's just not the case. That's not, at least for me,
that's never been something. I'm not a, you know, I'm not
tied to distance. I'm not necessarily tied to
time. I'm, I'm tied to the experience
(04:56):
and to the people that I'm with and enjoying my time, whether
again, it's 5 minutes or, you know, maybe if I'm feeling
really good, it is a little bit longer and I'll value that.
So it's, it's certainly something that we want to remove
barriers. We want to provide opportunities
for people to get out there in any capacity.
And we, we started fly fishing last year, obviously in Montana.
(05:18):
It's, it's everywhere and, and there's a lot of wonderful
nonprofits that do great things on the fly fishing side.
But how can we get somebody outside again if they can only
fish for 20 minutes? So it's, it's either completely
free or very low cost for peopleto participate.
We have all the gear. We've started a gear loan
program. So if you're a local or you're
(05:40):
visiting, you want to Yellowstone or any other
National Park here, you're welcome to take the gear out.
But how can we just get you outside maybe?
And, and for those that can't, how can we connect?
How can we get a coffee? How can we talk, you know,
virtually? I've provided a lot of virtual
support to families. I've been a type 1 diabetic most
(06:01):
of my life, so I've had familiescoming into Yellowstone saying,
hey, we're going to backpack fora week.
What are your suggestions of howto handle insulin and all those
things or we're just coming to Yellowstone, we're not going to
get out of the car. How do you, what are your
recommendations? Where are the pharmacies?
Where's some gluten free area, you know, friendly restaurants
(06:21):
in the area to eat things like that of like, OK, well, it it
may not be in the cards for you to get outside.
It may not be in the cards, but we can still find ways to help
you experience some some fun. Wow, I love that.
That is like, yeah, it's, it's really nice to merge 2
communities, the chronic illnesscommunity and people who maybe
(06:44):
have a hard time getting outsideand then the outdoor community
of like nature makes you feel good.
Yeah, I, I, I believe so. I mean, I, I think again, for
me, it's, it's certainly a mental health element.
It is I, I need to, I just got back from another hospital trip
last night. Yeah, it's all blending together
(07:05):
the other day. And I was about to say last
night, the other day and it's, it's on purpose, right?
We, I, I, I make sure that I have time within my appointments
to go outside and sit. Obviously I'm not, I wasn't able
to get out and go for really long walks in the city.
But I was able to go outside andsit on a bench and read or sit
(07:28):
on a bench and just sit there and take a deep breath and kind
of just just sit and not think about the next appointment or
what that test means or what that test usually doesn't mean,
as we all can appreciate. So yeah, I I think just getting
some fresh air and sitting outside is certainly powerful
for me at least. Yeah, yeah.
(07:51):
OK, I have to ask my question, but I feel like you've already
kind of giving me a lot of answers.
What do you think makes you chronically the sickest person
you know? So I'm insanely stubborn.
OK. Yeah, I, I, you know, it's, I
always, so I, when I, when I meet new people and I talk with
folks, I had one person locally that had migraines and say, you
(08:15):
know, I'm dealing with these migraines.
It's really impacted me. However, it's nothing compared
to what you have. And I was like, hey, hang on a
second. Like there's no, there's there's
no comparison here. I'm not, I'm not sitting here
saying in order to, to, you know, be in a chronic illness
community, you must meet this set of criteria.
(08:36):
You're impacted. And and that's there's, there's
please, there's no measurement. So I think when it comes to
chronically I'll, I'm just insanely stubborn.
I drive my doctors insane. I'm a self advocate, I'm a self
educator. I don't know everything
obviously, but I'm willing to question medical professionals.
(08:58):
I'm willing to ask hard questions and also say just
because that is the the standardway of treatment or you don't
think there is anything quote wrong with me.
I want to have a dialogue. I want to have a collaboration.
So I think it's it's really juststubbornness and collaboration.
I enjoy working with my medical team.
(09:18):
I enjoy probably driving them a little Batty with my questions
and with, you know, different journals that I've read.
So I don't know if that really answers your question, but yeah,
I think stubbornness and and oneother answer, I guess a couple
answers to your one question. I hope, right, like just I, I
(09:39):
just have hope that as a community we can find ways to
connect. As a community, we can find ways
to support each other and that we all can feel as good as as
possible for us individually. What that looks like for you is
very different from me and the next person.
But just hope that that we're able to live the the best
(10:02):
existence that we we want to live.
And that may not be the outdoorsfor everybody.
That may not whatever the case may be, but I have a lot of just
hope on that side as well. I think both of those answers
are are pretty sick in an oven of themselves.
But I appreciate it. Well, those were some really
good answers that you gave me. And I know that you mentioned
(10:23):
kind of at the beginning you hada colectomy, but that came from
you said your your type 1 diabetes.
But like what are we here to talk about today?
Talk to me about your story. Yeah.
So I was diagnosed, as I said, type 1 diabetes as a little kid.
It's kind of remarkable how far we've come from a technology
perspective, from a treatment perspective, understanding the
(10:47):
disease. Fast forward, I, you know, I'd
always dealt with little bouts of diarrhea just like a week at
a time from when I was in my early 20s.
I'm 42 now. And so we, you know, I had my
first colonoscopy, I think when I was like 26, just trying to
get AI had a really good endocrinologist that was ahead
(11:10):
of kind of the curve of thinkingand said, all right, let's just
take a look now figure out what's going on.
Nothing showed no, no, nothing. And he said, look, you know, so
I talked to the GI docs and theysaid, well, you're, you're high
strung, like fair enough. So just take it easy.
You know, you're stressed out. And again, it's kind of like,
well, I disagree. However, I agree.
(11:31):
Yes, I'm relatively type A. So over the years, two weeks of
diarrhea turned into a month turned into three months.
Fast forward to the winter of 2019 and I couldn't leave the
house. I was just riddled with pain,
massive bats of diarrhea. So I was referred to Mayo Clinic
(11:54):
in Rochester to their GI team, eventually found lymphocytic
colitis and went through every step of treatment from your
obviously your basic all the waythrough every infusion
imaginable. I ended up in the hospital in
the emergency room with shingleson my face and these lumps on my
(12:19):
arm, golf ball sized lumps on myarm.
And eventually that led to the identification of sarcoidosis,
which I seriously, I, I'm not, Iwish I was exaggerating, but
when the diagnosis came back, I had a doctor in the ER that had
a book and he kept peering around me and then going back
(12:42):
and then peering around. And finally I just made a joke
of some kind. He came in and he said, look, I,
I've just never seen anyone withactual sarcoidosis.
Just it's, it's never been in front of me.
And so now it was kind of like, all right, now we have a couple
different things we're treating and we don't quite understand
(13:04):
why. Meanwhile, the bouts of diarrhea
turned into 30 + a day. We exhausted medicine, we
exhausted every tests and finally came down to an
incredible surgeon that said, look, I don't want to do surgery
on you. However, you will have it at
some point and ultimately it's up to you.
(13:24):
Do you want to wait until it is,you know, life and death like an
emergency, or do you want to do this now and try to get some
life back? I can't tell you the answer, but
I'm here for you in there is no wrong answer.
And I, I couldn't thank him enough for having that view of
there's no wrong answer like you're going to do.
If you want to try to get through this without surgery, I
(13:47):
understand, but based on the tests and what everything's
showing, you're going to lose your colon.
So we decided to go ahead and and have the surgery on my 40th
birthday weekend, which was hilarious to me.
So after the analysis, they found sarcoid from my rectum to
(14:08):
my appendix and that change and that turns sort of things upside
down even further because I've been passing out unexpectedly,
non diabetes related, just making dinner for our kids.
And I hit the floor. So that seeing now active
(14:30):
sarcoid in my colon made them ask like, OK, what else is going
on? So I've never had active Sarcoid
in my heart test wise, but I do have a decent amount of scarring
and other elements of heart disease that points to, you
know, logically speaking, you had Sarcoid in your heart at
some point. And so we knew the surgery
(14:52):
wouldn't fix me. However, several years later,
we're still in a tough spot. I don't have active Sarcoid in
my lungs, however, I have lung inflammation.
I have early identification of Sarcoid in my liver.
So I have all of these anomaliesin my tests like so many can
(15:12):
relate to that don't make any sense in my my instance of
Sarcoid is very bizarre as well.So you have this rare disease
and then a rare element or or aspect of the disease as well.
So it's a lot, but that's kind of how that's how we got to
where we are. Yeah, Oh my goodness.
(15:35):
That is first of all, weirdly relatable to go to a doctor and
be like, this thing is happening.
They do a singular test and theygo no, no, you are fine.
Everything is fine. You are just stressed.
Yep. No, Absolutely, yeah.
Oh my goodness. But then yeah, to have it be
such a rare manifestation of an already rare diagnosis is
(15:58):
insane. And I love what you said about
the kind of like the medical student or the doctor peek
around the corner. Like looking at the book being
like, I've never seen it in reallife before you.
Actually exist. And OK, so now that I know a
little bit about your story withit for maybe the listeners at
home who don't know what is sarcoidosis?
(16:19):
Yeah. So I'll, I'll give you the
layman's my understanding, right.
So it's essentially traditionally a very for the
most part of the 9 disease if found and treated appropriately.
So it's essentially a collectionof white blood cells that clump
together and form granulomas. These these what I saw in my
skin, these golf ball size growths.
(16:44):
And that's really, it's really all it is.
Traditionally the way my understanding is it it, it
usually goes into your lungs first.
So essentially you have these granulomas that form in your
lungs make it difficult obviously to breathe.
And if you seek treatment and ifit is needed, you know, if
treatment is even needed, in most cases, they find it and
(17:05):
then ends up going away on its own.
So very rare cases actually require some form of, of
interaction, some form of treatment in the form of
obviously immune suppressants. There's just not a lot known
about it. Why does this, why does your
immune system react to this way?Why does it form like so many
(17:26):
other things that we have that, well, you know, modern medicine
is, is incredible. There's obviously so much that
we don't know. So really traditionally
speaking, it's a very, it's a benign disease.
However, it is serious for minority groups and folks that
(17:46):
don't seek regular medical attention.
It can be deadly. And it's, which again, is kind
of putting it on my advocacy hatis, is, is frustrating that that
there are still so many American, you know, Americans
that are underserved in our medical community simply because
where they may live or, or not having the financial means to
(18:09):
get help. So thankfully, you know, I, I
had some great folks at my fingertips that were able to
help figure out, you know, why this was habitable and not even
figure out why because we still don't have a really good idea.
But that's kind of Sarcoid in a nutshell, as it's traditionally
something that just kind of comes and goes and that's it.
But for me, you know, that's just more to make things
(18:30):
difficult, so. Of course, of course the
diabetes wasn't enough. Your body was like, no, no.
Oh yeah. Well, it's funny you say that
because I usually tell people that, you know, I was, I was 11
when I was diagnosed and I thought, OK, as I got older, I
thought, well, good news is I'vechecked the box, right?
Like this is my thing, so I'm good.
I'm not going to, you know, naively I thought I, I've, it's,
(18:53):
it's just Co diabetes, like I, we can get through this.
And then as the, you know, the dominoes kept falling.
You're like, holy gracious. OK, now, now what?
And even now today, we're still not quite sure, you know, is, is
everything that I'm feeling actually Sarcoid?
And a lot of the specialists aresaying no.
And then I have other specialists that say, well, in
(19:15):
the absence of another diagnosis, you have to just
assume that it is yet again a rare presentation of Sarcoid.
So we're doing that whole, whichso many of you, you know, your,
you and your listeners can understand and relate to.
We're doing that whole guessing game.
Right, right. And of course, doctors are kind
(19:35):
of just contradicting each otherin the sense where they're like,
well, we don't know what's happening.
So either it's something super rare or it's not happening.
Yes. Well, that's always my favorite.
Yes, because yeah, they're completely.
Yeah. OK.
OK. And so you have been kind of
dealing with the aftermath of your your sarcoid diagnosis for
(20:00):
the past couple of years. And I mean, of course, like you
have diabetes like you said as well.
But can you talk to me a little bit about how you're managing
your symptoms or kind of what you've learned to maybe share
with the listeners? I think the, the biggest thing
is ask questions and I and it's,and it's ask questions of the
(20:23):
approach and, and so, you know, for, for a new Sarcoid
diagnosis, my, my recommendations are always asked
the question of what is step one?
What are we treating? What aspects of Sarcoid are we
treating? At what point will we treat?
Because for many cases, it's a, it is a wait, it's a wait and
(20:44):
see if it's, you know, if it's not a life threatening
immediate, if there's no immediate threat, then it's the,
you know, the again, from my understanding is simply let's
wait and observe. So have I, I am an advocate for
timelines. So what is that?
OK, How long are we going to watch it?
How long does that? Are we six months?
(21:04):
Are we three months? How often am I going to have
these tests? And at what point are you going
to make a decision to then treat?
And if we do treat, what are some of the options that you
see? So essentially getting ahead, I
think is is 1 recommendation. I think 2.
Again, you have to be the squeaky wheel when it I, I can't
(21:26):
tell you how many. Again, I I know this is
unfortunately a very common story, but I don't understand
what's wrong with you. So I can't really help you, like
I can't quote fix you. So you're, there's nothing wrong
with your body. It's it's in your head.
You're, you're the problem. So being that self advocate and
(21:49):
asking the hard questions. There are some wonderful
nonprofits out there on the education side for Sarcoid, but
it's again, it's sort of it's misunderstood, it's limited.
Find a good rheumatologist and don't just go to a
rheumatologist that's going to look at your hands and your
ankles and ask you how you're sleeping.
(22:10):
Go to a rheumatologist if you can, or if you can find a a
hospital center that's willing to see you virtually.
Do it. Do it.
It's worth it. I've blown through a
rheumatologist. I finally have one now that I
think is asking the right questions of how do you want to
live? You know what?
What does life look like to you?And yeah, this isn't normal.
(22:32):
You, you know, your blood work shouldn't be like this.
No, I don't understand why. But let's work on it together
and see how we can help get you to where you want to be.
And I think so. So, so far that's been the best
approach of, of have that rheumatologist and lean on them,
have them be sort of your case manager.
(22:54):
Make sure they're talking to, you know, for me, I've got
cardiologist, endocrinologist good, you know, GI every,
everyone and their brother neurologist, you know, So have
them, talk to them and weed out what tests you actually need and
have some patience and grace with yourself.
(23:15):
You know, I feel like it's easy for me to say I wish I had it
with myself but all the time. But I think just it's a long
journey just like so many other chronic illnesses.
So that would be my recommendation on on the Sarcoid
front itself. OK, I like that.
I like that being able to say I have not found the correct
(23:35):
doctor. And yes, it is a privilege to be
able to say I have not found theright doctor and try to find a
new one. But.
It is. Yeah, finding one that works for
you, even maybe asking other people in the community if you
have people who like live near you, be like, hey, like did you
find a good doctor? Do you have a good medical
practice you can recommend? And then finding a good team,
(23:57):
like you said, everyone, so thatyou are collectively looking at
the whole body and being like, what do we think is going on
here? Yeah.
And, and for obviously for thosein a, in an urban setting,
there, there are more specialists that are handy for
us in a rural setting in Montana, not as much.
And I will say, you know, I cut,I, I cut deals with
(24:20):
practitioners to say, hey, I'll drive, you know, the four hours
to see you to do our initial intake.
Would you talk with my primary care doctor?
What if I go to my primary care's office and do a video
visit there and, and she can knock on my bones and do and
whatever. Like is there a way because I
just don't have, no, don't always have the mental capacity
(24:43):
to drive, you know, 6 total hours for hour and a half
appointment. So I think just trying to ask
those questions. Obviously there's insurance,
there's regulatory things that they can't get around.
Got it. However, once you get through
those, are there opportunities to get creative?
And again, yes, it, it is. I do, I do feel privileged to to
(25:06):
have different doctors at my disposal.
But if you don't, at at a minimum, just please get, you
know, get to your primary care doctor, establish some
relationship with someone that can help you advocate for
yourself. Yeah.
OK. First of all, that was genius.
I had never thought about the fact that you could cut deals
(25:29):
essentially with specialists, especially if you're in a rural
area because. Yeah, I mean, it's hard
sometimes to find a good specialist.
And then you're right. You're like, I don't want to
have to fly to see you. I don't want to have to get in a
car and drive however many hours.
But you could totally be like, OK, virtually.
And then if I go get these bloodtests, can you look at them?
(25:50):
And I don't necessarily have to go see you to do that.
Like, that's genius. I wouldn't have thought about it
like that. It's been hard.
We've we've racked up a lot of credit card debt traveling to
Rochester, traveling to Salt Lake City, traveling to Denver,
trying to find help for me. And yet again, I realized that
it's a privilege to have that credit card debt.
(26:11):
It also angers me. Yeah.
It it it also, I realized there are people that don't have the
ability to take on additional debt.
But the fact that so many of us,it's not an option, so many of
us have so much credit card debtto keep ourselves alive.
It, it, it just, it doesn't makesense to me.
(26:32):
And that's probably for another time.
How however, that's yeah, it is,it is truly mind numbing to me
that that that's the case. But it, it is.
So we'll continue to work through the parameters of it.
And again, there's also some wonderful nonprofits out there
that help, you know, on, on prescription costs, on medical
(26:52):
travel, things like that, if youqualify.
So it's certainly worth some Google searches.
Yes, there obviously there is always some options, but you're
right, it's genuinely like you're sitting there going, OK,
so the medication I need cost thousands of dollars.
I don't have thousands of dollars, my insurance says swear
(27:13):
words at me and closes a door and like there really isn't a
lot of options sometimes. So I'm I'm glad you said
something about it. I appreciate it.
Well, how about the well, our doctors disagree.
What doctors? It's just some guy named Dave in
a chair. I.
Swear he's not. Even a doctor, I can't prove it,
but I feel like I think you're right.
(27:35):
I think you're probably right because what doctor was in
medical school and is like, you know what I want to do?
I want to sit and reject people's claims like I, I can't
imagine that's that's really. An oath, A Hippocratic, Yeah, to
like, help people. That can't possibly be helping
people. Yeah, so it's, that's, that's
always gets me riled up where I'm like, OK, you know, it's
(27:57):
and, and again, kind of going back to that stubbornness, like
I talked about in the beginning and, and that self advocacy.
I, I mean, I, I sat in the waiting room, I'm not joking,
for six hours. I was at, in Rochester at Mayo
one time and they said, well, they, they can't see you on this
trip. Like when do they have a lunch?
I was like, what do you mean? I, I don't know.
(28:18):
I was like, I'll sit and wait. They'll, they'll be so Mayo
Clinic calls them checkers. You can go in and request to be
a checker, which means you sit and wait until there's a
cancellation. However, this office didn't
accept checkers. So I just sat in a chair and
(28:40):
stared at the receptionist and waited for 6:00-ish hours,
hoping that there'd be a cancellation.
And eventually, eventually therewas.
And, and I listed, I mean, I, I was that like, I'm just waiting
this. Finally she looked at me.
She's like, OK, I got like, you can get in now.
But again, it's, you know, it's that important to me that, that
(29:00):
I do everything I can. And if, if we're going to take
on the debt as a family and be there, then I'm going to make
the most of my time. And that would be 1 suggestion I
have for people that are traveling is, is line up as many
appointments as you can. Ensure that you have as many
tests lined up as, as obviously as needed and as, as required.
(29:21):
But definitely make the most of the time that you have.
Yes, OK, I like that. It's it's like when you go on
vacation, you try to get as manythings in there.
You try to visit as many friends, all those things.
It's the same way you're taking a horrible vacation for your for
your health. So you got.
To Yeah, no, you're right. And that's interesting you
(29:43):
brought that up because oddly enough, that's how we treated my
surgery. My wife and I, we treated like a
vacation. We went to minor League Baseball
games, we went to Art Museum. We just went on walks together,
went on runs together, joked about, you know, having the, the
ultimate colonoscopy or the ultimate colon cleanse, I think
(30:04):
was how we, we dubbed my surgery.
We with our kids, we had a farewell poop party.
So we had poop emojis, balloons all over the house.
And, and yes, you know, to an extent, all of this is very
serious. All of this is very stressful.
(30:25):
However, we've always found waysto insert some humor, insert
some levity, and try to have a little, you know, a little fun.
Yeah. And I think that's a very good
piece of advice is yes, obviously this all sucks and the
fact that we have to deal with it or make like, quote UN quote,
vacations just to go see a doctor is hard.
(30:46):
But yeah, you can absolutely make it into something better
than it is. Like you can go visit friends
while you're in a city to go to a Mayo Clinic, like you can do.
Things like. Better and worth.
It and, and keep in mind for folks that are traveling like
for Rochester specifically and even elements of Denver, I, I
(31:06):
kind of ingrained myself there'sa coffee shop I love in
Rochester by the hospital. And so I'd go and sit and time
appointments around going and having a coffee in the morning
and just a really good communityof artists and poets, all these
people that just come out hang out at the coffee shop.
And so it was always good to just get kind of a semblance of
(31:28):
humanity because you're, you know, as you know, you're poked
and proud and questioned all day, but then you go to listen
to somebody read their poetry, you go and listen to what
whatever it doesn't matter. It's, I think there's ways,
there's opportunities to sort ofembed yourself within the
community even just temporarily just to kind of, I don't know,
(31:49):
shake off some of the, the hospital.
Yes, yeah, gotcha, gotcha. The the mental health part of it
of just like I don't want to feel like I'm like just a a
patient, but also yeah, like quite literally like wipe off
the germs. Just be like I am a person now
in this moment. Completely.
OK, OK, I say this with every guest, but I genuinely learned a
(32:15):
lot from this episode. Like I feel like I'm going to
walk away from this and be like,I feel like someone understands
the situation that I'm in. But also I feel like I've
learned maybe some stubbornness from you.
So some like like this is not how things should be and we are
able to change it. We are able to make the best of
(32:36):
a of a bad situation. So thank you like this has been
such a good episode. Well, I, I'm grateful for the
work that you're doing. Obviously you are not only
taking care of yourself and yourand your family and doing the
things obviously, and, and you show that, which I appreciate,
but also you're providing again,that that community for us, for
(32:57):
the Chronicles, you know, as a whole, which I think is, is
needed and appreciated. And, and you do it in a fun way.
And I think that's, that's also for me anyway, important.
There's just, there's a lot moreto us than just the, the stats
that the doctors want to want toshow us.
So definitely appreciate you having me on.
(33:19):
Appreciate everything that you're doing for us.
Thanks. Wow, what a fun compliment sesh.
Well, for the listeners who enjoyed hearing your story and
maybe want to connect with you and your nonprofit, where can
they do that? So we it's egadventures.org that
(33:42):
is our website. So I do a lot of I'm old, so I
blog, I write, I enjoy writing. So I do a lot of writing there
about just experiences with chronic illnesses outdoors, you
know, insulin strategies while skiing, hiking, whatever the
case may be, as well as it's, it's Evergreen under score
(34:03):
adventures, under score Mt on social media.
So I again, being old, I'm not fantastic on social media, but
I'm, I'm, I'm learning from all of, of, of everybody.
My kids, we have a teenage daughter who likes to tell me
how, how cringe I am. I think that's the term she
keeps using. Yeah, Dad, you just can't.
(34:25):
You just can't do that. That's so, so any, any time I'm
working on a new project or something, I always, I run it by
her first. And if she gives me a thumbs up,
then I'm I'm good. But yeah, please feel free to
reach out to us over social media or on our website and we'd
be happy to connect with you, support you in any way that that
(34:46):
that you need. OK, yes, also I'm going to after
this episode, go check that I'm following you guys and check out
your guys's website cuz I know Ireally appreciate what you guys
are doing and I'm, I'm so glad you you popped on the podcast.
Yeah, same here. Thanks so much.
Of course. OK, listeners, that is all we
have for you today. I'm Clark, this is Jonathan, and
(35:08):
this has been Chronically the Sickest podcast, you know.
That's all folks. Thank you so much for listening.
If you liked this episode, clickthat follow up button on your
podcast app of choice to get notified every other week.
You can find the podcast on Instagram and TikTok at
Chronically the Sickest Podcast.Let me know if you have any
(35:31):
questions or just want to chat. I love hearing from y'all.
Until next time, I'm Clark, and this has been Chronically the
Sickest podcast you know. Disclaimer, this is a
conversational podcast and whilewe make sure our diagnosis
journey, symptoms and treatment plan, this is not medical
(35:53):
advice. If you have any questions
regarding your health, please reach out to your doctor and
have a great day.
Hello folks, and welcome to Chronically the Sickest, the
podcast where we talk about all things that make us chronically
the sickest people we know. I'm Clark, your host.
It's nice to chat with you this week.
Join us as we dive into the episode, sit back, relax, and
enjoy the show. Welcome, John, to Chronically
(00:34):
the Sickest podcast. How are you doing?
Thank you. Thanks for having me doing
fantastic. Oh good.
Wow, fantastic. What a great way to answer that.
But for the listeners who don't know you, can you tell us about
yourself? Yeah.
So Jonathan, I'm a father of three.
I always say I'm a professional volunteer.
So my wife and I cofounded A chronic illness focused
(00:55):
nonprofit a number of years ago,also just active in our
community. So that kind of in addition to
obviously being chronically I'll.
Of course, that's basically a job and a hobby.
Got it. Yes, very much so.
OK, I love that. So, OK, so you have your
(01:16):
nonprofit, you have your family,of course, and your nonprofit,
it's like focused on being in nature, is it not?
Yeah, So we, we started Evergreen Adventures after my
colectomy. So I had my colon completely
removed coming up on three yearsand we're in a rural area in
Montana. And I was just seeking to
(01:39):
connect with others. And while there are obviously
support groups and different options out there across the
state of Montana, I wanted to find other ways to connect with
people. And the outdoors is something
that's always been really important to me, even before my
litany of of health challenges. So we, for years we talked about
(02:01):
how can we try to provide some support to the chronic illness
community and going through that, the surgery, the having my
colon removed kind of identifiedhere.
Here's a chance to, to do it because so many of us in the
chronic illness community want to be outside.
We want to go have coffee with our friends.
(02:21):
And it may not always be understood of, well, either I
can't or hey, I can go have coffee for 5 minutes or I, I
can't go on a 10 mile hike, but I can go on a 5 minute hike.
And so 5 minutes is better than 0.
And that's really kind of how things started snowballing.
And it was actually after a session with my counselor, a
(02:43):
local mental health professional, that I would
always walk or run to my sessions with her.
And as a way to just sort of decompressing, you know, kind of
switch gears back from, you know, back into, you know,
family and parenthood. So it was actually during that
after a session that that I thought, all right, let's do
this. And you, I, I have a background
(03:05):
in communications, so you'd think I'd have like a plan and
really organized. And my wife said, all right,
great, let's sit down, let's come up with a five year plan.
And I said, Nah, the paperwork'salready filed.
Like we're we're moving forward.So yeah, it didn't really didn't
wait. Got it.
Well, it is definitely one of those ideas it sounds like for
you that you thought about for awhile and then just kind of like
(03:28):
pulled the trigger on it. So it's like there was almost
like no planning in the plan. Yeah, you know, that's that's a
great way to find out like that.I'll have to save that.
Hey, I do agree with your wife though, there is a lot of
planning that needs to go into stuff like this but.
Yes, yeah, we're, we're doing, we're we're catching up.
Yes, yeah, OK, that's so amazing.
(03:49):
And I love that approach to being like, I can't do something
maybe for an hour, but I can do it for 5 minutes and that's,
that's enough to be able to be like, I can go outside.
There's, I just, I feel like there's a lot of, well, there's
a lot of pressure on us right within the chronic illness
community of, of your diagnosis or of how you're treating it or
(04:12):
the things you should or shouldn't do.
I feel like there's just a lot of, for me at least, there's a
lot of self reflection, questioning sort of how I'm
doing things at at times, how I'm managing my illness.
And the the last thing I wanted to do was tell someone how they
should be acting or tell someoneyou should be doing X amount of
(04:35):
miles. And again, there's a lot of
pressure in the outdoor community of unless you're doing
30 miles and 50,000 vertical like you're nothing.
And that's just not the case. That's not, at least for me,
that's never been something. I'm not a, you know, I'm not
tied to distance. I'm not necessarily tied to
time. I'm, I'm tied to the experience
(04:56):
and to the people that I'm with and enjoying my time, whether
again, it's 5 minutes or, you know, maybe if I'm feeling
really good, it is a little bit longer and I'll value that.
So it's, it's certainly something that we want to remove
barriers. We want to provide opportunities
for people to get out there in any capacity.
And we, we started fly fishing last year, obviously in Montana.
(05:18):
It's, it's everywhere and, and there's a lot of wonderful
nonprofits that do great things on the fly fishing side.
But how can we get somebody outside again if they can only
fish for 20 minutes? So it's, it's either completely
free or very low cost for peopleto participate.
We have all the gear. We've started a gear loan
program. So if you're a local or you're
(05:40):
visiting, you want to Yellowstone or any other
National Park here, you're welcome to take the gear out.
But how can we just get you outside maybe?
And, and for those that can't, how can we connect?
How can we get a coffee? How can we talk, you know,
virtually? I've provided a lot of virtual
support to families. I've been a type 1 diabetic most
(06:01):
of my life, so I've had familiescoming into Yellowstone saying,
hey, we're going to backpack fora week.
What are your suggestions of howto handle insulin and all those
things or we're just coming to Yellowstone, we're not going to
get out of the car. How do you, what are your
recommendations? Where are the pharmacies?
Where's some gluten free area, you know, friendly restaurants
(06:21):
in the area to eat things like that of like, OK, well, it it
may not be in the cards for you to get outside.
It may not be in the cards, but we can still find ways to help
you experience some some fun. Wow, I love that.
That is like, yeah, it's, it's really nice to merge 2
communities, the chronic illnesscommunity and people who maybe
(06:44):
have a hard time getting outsideand then the outdoor community
of like nature makes you feel good.
Yeah, I, I, I believe so. I mean, I, I think again, for
me, it's, it's certainly a mental health element.
It is I, I need to, I just got back from another hospital trip
last night. Yeah, it's all blending together
(07:05):
the other day. And I was about to say last
night, the other day and it's, it's on purpose, right?
We, I, I, I make sure that I have time within my appointments
to go outside and sit. Obviously I'm not, I wasn't able
to get out and go for really long walks in the city.
But I was able to go outside andsit on a bench and read or sit
(07:28):
on a bench and just sit there and take a deep breath and kind
of just just sit and not think about the next appointment or
what that test means or what that test usually doesn't mean,
as we all can appreciate. So yeah, I I think just getting
some fresh air and sitting outside is certainly powerful
for me at least. Yeah, yeah.
(07:51):
OK, I have to ask my question, but I feel like you've already
kind of giving me a lot of answers.
What do you think makes you chronically the sickest person
you know? So I'm insanely stubborn.
OK. Yeah, I, I, you know, it's, I
always, so I, when I, when I meet new people and I talk with
folks, I had one person locally that had migraines and say, you
(08:15):
know, I'm dealing with these migraines.
It's really impacted me. However, it's nothing compared
to what you have. And I was like, hey, hang on a
second. Like there's no, there's there's
no comparison here. I'm not, I'm not sitting here
saying in order to, to, you know, be in a chronic illness
community, you must meet this set of criteria.
(08:36):
You're impacted. And and that's there's, there's
please, there's no measurement. So I think when it comes to
chronically I'll, I'm just insanely stubborn.
I drive my doctors insane. I'm a self advocate, I'm a self
educator. I don't know everything
obviously, but I'm willing to question medical professionals.
(08:58):
I'm willing to ask hard questions and also say just
because that is the the standardway of treatment or you don't
think there is anything quote wrong with me.
I want to have a dialogue. I want to have a collaboration.
So I think it's it's really juststubbornness and collaboration.
I enjoy working with my medical team.
(09:18):
I enjoy probably driving them a little Batty with my questions
and with, you know, different journals that I've read.
So I don't know if that really answers your question, but yeah,
I think stubbornness and and oneother answer, I guess a couple
answers to your one question. I hope, right, like just I, I
(09:39):
just have hope that as a community we can find ways to
connect. As a community, we can find ways
to support each other and that we all can feel as good as as
possible for us individually. What that looks like for you is
very different from me and the next person.
But just hope that that we're able to live the the best
(10:02):
existence that we we want to live.
And that may not be the outdoorsfor everybody.
That may not whatever the case may be, but I have a lot of just
hope on that side as well. I think both of those answers
are are pretty sick in an oven of themselves.
But I appreciate it. Well, those were some really
good answers that you gave me. And I know that you mentioned
(10:23):
kind of at the beginning you hada colectomy, but that came from
you said your your type 1 diabetes.
But like what are we here to talk about today?
Talk to me about your story. Yeah.
So I was diagnosed, as I said, type 1 diabetes as a little kid.
It's kind of remarkable how far we've come from a technology
perspective, from a treatment perspective, understanding the
(10:47):
disease. Fast forward, I, you know, I'd
always dealt with little bouts of diarrhea just like a week at
a time from when I was in my early 20s.
I'm 42 now. And so we, you know, I had my
first colonoscopy, I think when I was like 26, just trying to
get AI had a really good endocrinologist that was ahead
(11:10):
of kind of the curve of thinkingand said, all right, let's just
take a look now figure out what's going on.
Nothing showed no, no, nothing. And he said, look, you know, so
I talked to the GI docs and theysaid, well, you're, you're high
strung, like fair enough. So just take it easy.
You know, you're stressed out. And again, it's kind of like,
well, I disagree. However, I agree.
(11:31):
Yes, I'm relatively type A. So over the years, two weeks of
diarrhea turned into a month turned into three months.
Fast forward to the winter of 2019 and I couldn't leave the
house. I was just riddled with pain,
massive bats of diarrhea. So I was referred to Mayo Clinic
(11:54):
in Rochester to their GI team, eventually found lymphocytic
colitis and went through every step of treatment from your
obviously your basic all the waythrough every infusion
imaginable. I ended up in the hospital in
the emergency room with shingleson my face and these lumps on my
(12:19):
arm, golf ball sized lumps on myarm.
And eventually that led to the identification of sarcoidosis,
which I seriously, I, I'm not, Iwish I was exaggerating, but
when the diagnosis came back, I had a doctor in the ER that had
a book and he kept peering around me and then going back
(12:42):
and then peering around. And finally I just made a joke
of some kind. He came in and he said, look, I,
I've just never seen anyone withactual sarcoidosis.
Just it's, it's never been in front of me.
And so now it was kind of like, all right, now we have a couple
different things we're treating and we don't quite understand
(13:04):
why. Meanwhile, the bouts of diarrhea
turned into 30 + a day. We exhausted medicine, we
exhausted every tests and finally came down to an
incredible surgeon that said, look, I don't want to do surgery
on you. However, you will have it at
some point and ultimately it's up to you.
(13:24):
Do you want to wait until it is,you know, life and death like an
emergency, or do you want to do this now and try to get some
life back? I can't tell you the answer, but
I'm here for you in there is no wrong answer.
And I, I couldn't thank him enough for having that view of
there's no wrong answer like you're going to do.
If you want to try to get through this without surgery, I
(13:47):
understand, but based on the tests and what everything's
showing, you're going to lose your colon.
So we decided to go ahead and and have the surgery on my 40th
birthday weekend, which was hilarious to me.
So after the analysis, they found sarcoid from my rectum to
(14:08):
my appendix and that change and that turns sort of things upside
down even further because I've been passing out unexpectedly,
non diabetes related, just making dinner for our kids.
And I hit the floor. So that seeing now active
(14:30):
sarcoid in my colon made them ask like, OK, what else is going
on? So I've never had active Sarcoid
in my heart test wise, but I do have a decent amount of scarring
and other elements of heart disease that points to, you
know, logically speaking, you had Sarcoid in your heart at
some point. And so we knew the surgery
(14:52):
wouldn't fix me. However, several years later,
we're still in a tough spot. I don't have active Sarcoid in
my lungs, however, I have lung inflammation.
I have early identification of Sarcoid in my liver.
So I have all of these anomaliesin my tests like so many can
(15:12):
relate to that don't make any sense in my my instance of
Sarcoid is very bizarre as well.So you have this rare disease
and then a rare element or or aspect of the disease as well.
So it's a lot, but that's kind of how that's how we got to
where we are. Yeah, Oh my goodness.
(15:35):
That is first of all, weirdly relatable to go to a doctor and
be like, this thing is happening.
They do a singular test and theygo no, no, you are fine.
Everything is fine. You are just stressed.
Yep. No, Absolutely, yeah.
Oh my goodness. But then yeah, to have it be
such a rare manifestation of an already rare diagnosis is
(15:58):
insane. And I love what you said about
the kind of like the medical student or the doctor peek
around the corner. Like looking at the book being
like, I've never seen it in reallife before you.
Actually exist. And OK, so now that I know a
little bit about your story withit for maybe the listeners at
home who don't know what is sarcoidosis?
(16:19):
Yeah. So I'll, I'll give you the
layman's my understanding, right.
So it's essentially traditionally a very for the
most part of the 9 disease if found and treated appropriately.
So it's essentially a collectionof white blood cells that clump
together and form granulomas. These these what I saw in my
skin, these golf ball size growths.
(16:44):
And that's really, it's really all it is.
Traditionally the way my understanding is it it, it
usually goes into your lungs first.
So essentially you have these granulomas that form in your
lungs make it difficult obviously to breathe.
And if you seek treatment and ifit is needed, you know, if
treatment is even needed, in most cases, they find it and
(17:05):
then ends up going away on its own.
So very rare cases actually require some form of, of
interaction, some form of treatment in the form of
obviously immune suppressants. There's just not a lot known
about it. Why does this, why does your
immune system react to this way?Why does it form like so many
(17:26):
other things that we have that, well, you know, modern medicine
is, is incredible. There's obviously so much that
we don't know. So really traditionally
speaking, it's a very, it's a benign disease.
However, it is serious for minority groups and folks that
(17:46):
don't seek regular medical attention.
It can be deadly. And it's, which again, is kind
of putting it on my advocacy hatis, is, is frustrating that that
there are still so many American, you know, Americans
that are underserved in our medical community simply because
where they may live or, or not having the financial means to
(18:09):
get help. So thankfully, you know, I, I
had some great folks at my fingertips that were able to
help figure out, you know, why this was habitable and not even
figure out why because we still don't have a really good idea.
But that's kind of Sarcoid in a nutshell, as it's traditionally
something that just kind of comes and goes and that's it.
But for me, you know, that's just more to make things
(18:30):
difficult, so. Of course, of course the
diabetes wasn't enough. Your body was like, no, no.
Oh yeah. Well, it's funny you say that
because I usually tell people that, you know, I was, I was 11
when I was diagnosed and I thought, OK, as I got older, I
thought, well, good news is I'vechecked the box, right?
Like this is my thing, so I'm good.
I'm not going to, you know, naively I thought I, I've, it's,
(18:53):
it's just Co diabetes, like I, we can get through this.
And then as the, you know, the dominoes kept falling.
You're like, holy gracious. OK, now, now what?
And even now today, we're still not quite sure, you know, is, is
everything that I'm feeling actually Sarcoid?
And a lot of the specialists aresaying no.
And then I have other specialists that say, well, in
(19:15):
the absence of another diagnosis, you have to just
assume that it is yet again a rare presentation of Sarcoid.
So we're doing that whole, whichso many of you, you know, your,
you and your listeners can understand and relate to.
We're doing that whole guessing game.
Right, right. And of course, doctors are kind
(19:35):
of just contradicting each otherin the sense where they're like,
well, we don't know what's happening.
So either it's something super rare or it's not happening.
Yes. Well, that's always my favorite.
Yes, because yeah, they're completely.
Yeah. OK.
OK. And so you have been kind of
dealing with the aftermath of your your sarcoid diagnosis for
(20:00):
the past couple of years. And I mean, of course, like you
have diabetes like you said as well.
But can you talk to me a little bit about how you're managing
your symptoms or kind of what you've learned to maybe share
with the listeners? I think the, the biggest thing
is ask questions and I and it's,and it's ask questions of the
(20:23):
approach and, and so, you know, for, for a new Sarcoid
diagnosis, my, my recommendations are always asked
the question of what is step one?
What are we treating? What aspects of Sarcoid are we
treating? At what point will we treat?
Because for many cases, it's a, it is a wait, it's a wait and
(20:44):
see if it's, you know, if it's not a life threatening
immediate, if there's no immediate threat, then it's the,
you know, the again, from my understanding is simply let's
wait and observe. So have I, I am an advocate for
timelines. So what is that?
OK, How long are we going to watch it?
How long does that? Are we six months?
(21:04):
Are we three months? How often am I going to have
these tests? And at what point are you going
to make a decision to then treat?
And if we do treat, what are some of the options that you
see? So essentially getting ahead, I
think is is 1 recommendation. I think 2.
Again, you have to be the squeaky wheel when it I, I can't
(21:26):
tell you how many. Again, I I know this is
unfortunately a very common story, but I don't understand
what's wrong with you. So I can't really help you, like
I can't quote fix you. So you're, there's nothing wrong
with your body. It's it's in your head.
You're, you're the problem. So being that self advocate and
(21:49):
asking the hard questions. There are some wonderful
nonprofits out there on the education side for Sarcoid, but
it's again, it's sort of it's misunderstood, it's limited.
Find a good rheumatologist and don't just go to a
rheumatologist that's going to look at your hands and your
ankles and ask you how you're sleeping.
(22:10):
Go to a rheumatologist if you can, or if you can find a a
hospital center that's willing to see you virtually.
Do it. Do it.
It's worth it. I've blown through a
rheumatologist. I finally have one now that I
think is asking the right questions of how do you want to
live? You know what?
What does life look like to you?And yeah, this isn't normal.
(22:32):
You, you know, your blood work shouldn't be like this.
No, I don't understand why. But let's work on it together
and see how we can help get you to where you want to be.
And I think so. So, so far that's been the best
approach of, of have that rheumatologist and lean on them,
have them be sort of your case manager.
(22:54):
Make sure they're talking to, you know, for me, I've got
cardiologist, endocrinologist good, you know, GI every,
everyone and their brother neurologist, you know, So have
them, talk to them and weed out what tests you actually need and
have some patience and grace with yourself.
(23:15):
You know, I feel like it's easy for me to say I wish I had it
with myself but all the time. But I think just it's a long
journey just like so many other chronic illnesses.
So that would be my recommendation on on the Sarcoid
front itself. OK, I like that.
I like that being able to say I have not found the correct
(23:35):
doctor. And yes, it is a privilege to be
able to say I have not found theright doctor and try to find a
new one. But.
It is. Yeah, finding one that works for
you, even maybe asking other people in the community if you
have people who like live near you, be like, hey, like did you
find a good doctor? Do you have a good medical
practice you can recommend? And then finding a good team,
(23:57):
like you said, everyone, so thatyou are collectively looking at
the whole body and being like, what do we think is going on
here? Yeah.
And, and for obviously for thosein a, in an urban setting,
there, there are more specialists that are handy for
us in a rural setting in Montana, not as much.
And I will say, you know, I cut,I, I cut deals with
(24:20):
practitioners to say, hey, I'll drive, you know, the four hours
to see you to do our initial intake.
Would you talk with my primary care doctor?
What if I go to my primary care's office and do a video
visit there and, and she can knock on my bones and do and
whatever. Like is there a way because I
just don't have, no, don't always have the mental capacity
(24:43):
to drive, you know, 6 total hours for hour and a half
appointment. So I think just trying to ask
those questions. Obviously there's insurance,
there's regulatory things that they can't get around.
Got it. However, once you get through
those, are there opportunities to get creative?
And again, yes, it, it is. I do, I do feel privileged to to
(25:06):
have different doctors at my disposal.
But if you don't, at at a minimum, just please get, you
know, get to your primary care doctor, establish some
relationship with someone that can help you advocate for
yourself. Yeah.
OK. First of all, that was genius.
I had never thought about the fact that you could cut deals
(25:29):
essentially with specialists, especially if you're in a rural
area because. Yeah, I mean, it's hard
sometimes to find a good specialist.
And then you're right. You're like, I don't want to
have to fly to see you. I don't want to have to get in a
car and drive however many hours.
But you could totally be like, OK, virtually.
And then if I go get these bloodtests, can you look at them?
(25:50):
And I don't necessarily have to go see you to do that.
Like, that's genius. I wouldn't have thought about it
like that. It's been hard.
We've we've racked up a lot of credit card debt traveling to
Rochester, traveling to Salt Lake City, traveling to Denver,
trying to find help for me. And yet again, I realized that
it's a privilege to have that credit card debt.
(26:11):
It also angers me. Yeah.
It it it also, I realized there are people that don't have the
ability to take on additional debt.
But the fact that so many of us,it's not an option, so many of
us have so much credit card debtto keep ourselves alive.
It, it, it just, it doesn't makesense to me.
(26:32):
And that's probably for another time.
How however, that's yeah, it is,it is truly mind numbing to me
that that that's the case. But it, it is.
So we'll continue to work through the parameters of it.
And again, there's also some wonderful nonprofits out there
that help, you know, on, on prescription costs, on medical
(26:52):
travel, things like that, if youqualify.
So it's certainly worth some Google searches.
Yes, there obviously there is always some options, but you're
right, it's genuinely like you're sitting there going, OK,
so the medication I need cost thousands of dollars.
I don't have thousands of dollars, my insurance says swear
(27:13):
words at me and closes a door and like there really isn't a
lot of options sometimes. So I'm I'm glad you said
something about it. I appreciate it.
Well, how about the well, our doctors disagree.
What doctors? It's just some guy named Dave in
a chair. I.
Swear he's not. Even a doctor, I can't prove it,
but I feel like I think you're right.
(27:35):
I think you're probably right because what doctor was in
medical school and is like, you know what I want to do?
I want to sit and reject people's claims like I, I can't
imagine that's that's really. An oath, A Hippocratic, Yeah, to
like, help people. That can't possibly be helping
people. Yeah, so it's, that's, that's
always gets me riled up where I'm like, OK, you know, it's
(27:57):
and, and again, kind of going back to that stubbornness, like
I talked about in the beginning and, and that self advocacy.
I, I mean, I, I sat in the waiting room, I'm not joking,
for six hours. I was at, in Rochester at Mayo
one time and they said, well, they, they can't see you on this
trip. Like when do they have a lunch?
I was like, what do you mean? I, I don't know.
(28:18):
I was like, I'll sit and wait. They'll, they'll be so Mayo
Clinic calls them checkers. You can go in and request to be
a checker, which means you sit and wait until there's a
cancellation. However, this office didn't
accept checkers. So I just sat in a chair and
(28:40):
stared at the receptionist and waited for 6:00-ish hours,
hoping that there'd be a cancellation.
And eventually, eventually therewas.
And, and I listed, I mean, I, I was that like, I'm just waiting
this. Finally she looked at me.
She's like, OK, I got like, you can get in now.
But again, it's, you know, it's that important to me that, that
(29:00):
I do everything I can. And if, if we're going to take
on the debt as a family and be there, then I'm going to make
the most of my time. And that would be 1 suggestion I
have for people that are traveling is, is line up as many
appointments as you can. Ensure that you have as many
tests lined up as, as obviously as needed and as, as required.
(29:21):
But definitely make the most of the time that you have.
Yes, OK, I like that. It's it's like when you go on
vacation, you try to get as manythings in there.
You try to visit as many friends, all those things.
It's the same way you're taking a horrible vacation for your for
your health. So you got.
To Yeah, no, you're right. And that's interesting you
(29:43):
brought that up because oddly enough, that's how we treated my
surgery. My wife and I, we treated like a
vacation. We went to minor League Baseball
games, we went to Art Museum. We just went on walks together,
went on runs together, joked about, you know, having the, the
ultimate colonoscopy or the ultimate colon cleanse, I think
(30:04):
was how we, we dubbed my surgery.
We with our kids, we had a farewell poop party.
So we had poop emojis, balloons all over the house.
And, and yes, you know, to an extent, all of this is very
serious. All of this is very stressful.
(30:25):
However, we've always found waysto insert some humor, insert
some levity, and try to have a little, you know, a little fun.
Yeah. And I think that's a very good
piece of advice is yes, obviously this all sucks and the
fact that we have to deal with it or make like, quote UN quote,
vacations just to go see a doctor is hard.
(30:46):
But yeah, you can absolutely make it into something better
than it is. Like you can go visit friends
while you're in a city to go to a Mayo Clinic, like you can do.
Things like. Better and worth.
It and, and keep in mind for folks that are traveling like
for Rochester specifically and even elements of Denver, I, I
(31:06):
kind of ingrained myself there'sa coffee shop I love in
Rochester by the hospital. And so I'd go and sit and time
appointments around going and having a coffee in the morning
and just a really good communityof artists and poets, all these
people that just come out hang out at the coffee shop.
And so it was always good to just get kind of a semblance of
(31:28):
humanity because you're, you know, as you know, you're poked
and proud and questioned all day, but then you go to listen
to somebody read their poetry, you go and listen to what
whatever it doesn't matter. It's, I think there's ways,
there's opportunities to sort ofembed yourself within the
community even just temporarily just to kind of, I don't know,
(31:49):
shake off some of the, the hospital.
Yes, yeah, gotcha, gotcha. The the mental health part of it
of just like I don't want to feel like I'm like just a a
patient, but also yeah, like quite literally like wipe off
the germs. Just be like I am a person now
in this moment. Completely.
OK, OK, I say this with every guest, but I genuinely learned a
(32:15):
lot from this episode. Like I feel like I'm going to
walk away from this and be like,I feel like someone understands
the situation that I'm in. But also I feel like I've
learned maybe some stubbornness from you.
So some like like this is not how things should be and we are
able to change it. We are able to make the best of
(32:36):
a of a bad situation. So thank you like this has been
such a good episode. Well, I, I'm grateful for the
work that you're doing. Obviously you are not only
taking care of yourself and yourand your family and doing the
things obviously, and, and you show that, which I appreciate,
but also you're providing again,that that community for us, for
(32:57):
the Chronicles, you know, as a whole, which I think is, is
needed and appreciated. And, and you do it in a fun way.
And I think that's, that's also for me anyway, important.
There's just, there's a lot moreto us than just the, the stats
that the doctors want to want toshow us.
So definitely appreciate you having me on.
(33:19):
Appreciate everything that you're doing for us.
Thanks. Wow, what a fun compliment sesh.
Well, for the listeners who enjoyed hearing your story and
maybe want to connect with you and your nonprofit, where can
they do that? So we it's egadventures.org that
(33:42):
is our website. So I do a lot of I'm old, so I
blog, I write, I enjoy writing. So I do a lot of writing there
about just experiences with chronic illnesses outdoors, you
know, insulin strategies while skiing, hiking, whatever the
case may be, as well as it's, it's Evergreen under score
(34:03):
adventures, under score Mt on social media.
So I again, being old, I'm not fantastic on social media, but
I'm, I'm, I'm learning from all of, of, of everybody.
My kids, we have a teenage daughter who likes to tell me
how, how cringe I am. I think that's the term she
keeps using. Yeah, Dad, you just can't.
(34:25):
You just can't do that. That's so, so any, any time I'm
working on a new project or something, I always, I run it by
her first. And if she gives me a thumbs up,
then I'm I'm good. But yeah, please feel free to
reach out to us over social media or on our website and we'd
be happy to connect with you, support you in any way that that
(34:46):
that you need. OK, yes, also I'm going to after
this episode, go check that I'm following you guys and check out
your guys's website cuz I know Ireally appreciate what you guys
are doing and I'm, I'm so glad you you popped on the podcast.
Yeah, same here. Thanks so much.
Of course. OK, listeners, that is all we
have for you today. I'm Clark, this is Jonathan, and
(35:08):
this has been Chronically the Sickest podcast, you know.
That's all folks. Thank you so much for listening.
If you liked this episode, clickthat follow up button on your
podcast app of choice to get notified every other week.
You can find the podcast on Instagram and TikTok at
Chronically the Sickest Podcast.Let me know if you have any
(35:31):
questions or just want to chat. I love hearing from y'all.
Until next time, I'm Clark, and this has been Chronically the
Sickest podcast you know. Disclaimer, this is a
conversational podcast and whilewe make sure our diagnosis
journey, symptoms and treatment plan, this is not medical
(35:53):
advice. If you have any questions
regarding your health, please reach out to your doctor and
have a great day.
Popular Podcasts
Law & Order: Criminal Justice System - Season 1 & Season 2
Season Two Out Now! Law & Order: Criminal Justice System tells the real stories behind the landmark cases that have shaped how the most dangerous and influential criminals in America are prosecuted. In its second season, the series tackles the threat of terrorism in the United States. From the rise of extremist political groups in the 60s to domestic lone wolves in the modern day, we explore how organizations like the FBI and Joint Terrorism Take Force have evolved to fight back against a multitude of terrorist threats.
Dateline NBC
Current and classic episodes, featuring compelling true-crime mysteries, powerful documentaries and in-depth investigations. Follow now to get the latest episodes of Dateline NBC completely free, or subscribe to Dateline Premium for ad-free listening and exclusive bonus content: DatelinePremium.com
NFL Daily with Gregg Rosenthal
Gregg Rosenthal and a rotating crew of elite NFL Media co-hosts, including Patrick Claybon, Colleen Wolfe, Steve Wyche, Nick Shook and Jourdan Rodrigue of The Athletic get you caught up daily on all the NFL news and analysis you need to be smarter and funnier than your friends.