June 6, 2025 • 54 mins
Welcome to Chronically The Sickest - the sickest podcast you know.
On today’s episode I’m joined by tech writer, Avery.
We get into working from home, insurance appeals and the importance of sunscreen.
Follow Avery on Instagram @avery.vaughan
Shop tools mentioned & connect with me here :)
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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, Avery to Chronically
(00:33):
the Sickest podcast. How are you today?
I'm pretty good. How are you?
I am doing well. I am so excited to be doing an
in person recording so thank youfor being here.
Thank you for having me. Well, to start us off, I wanted
to kind of ask, like, tell me a little bit about yourself.
So I'm Avery. I'm 25 and almost 26, which is
(00:55):
insane. I, it's so weird getting older,
but I am a technical writer, so I have like a hybrid, hybrid
job, which is very convenient when you're chronically ill, but
also very convenient in the sense that like when I was fully
remote, it was a lot easier for me to kind of fall back into
like depressive spirals and whatnot.
So it's actually been pretty nice.
(01:15):
It's very flexible, which I appreciate.
And gosh, what else? I live with my family.
I moved back in a couple years ago and it's actually been very,
very nice. I have a good relationship with
them now, which has been very helpful in regards to
everything. Oh gosh, what else?
Whenever people ask about me, it's always hard.
I love dogs. I have two and I was just
(01:36):
telling you about. That, yeah.
But I love dogs. I am very into fragrance and
perfume and things like that. Very into it, very into writing.
Like, I do a lot of creative writing.
Since I've been a tech writer, Ihaven't been writing quite as
much creatively 'cause I feel like I'm just so used to being
in front of a screen all the time.
But it's I've been writing sinceI was little, so that's always
(01:56):
been kind of like a saving gracefor me, regardless of where I am
in my life. So that's pretty nice.
God, what else? Yeah.
It's all I can think of right now is like an intro.
No, that's fair. That was really good.
Like, I feel like I got to know you as a person, what you do.
You're kind of, you know, dogs. OK, Thank you for telling me a
little bit about yourself. And I wanted to ask the big
(02:19):
question. What do you think makes you
chronically the sickest person you know?
Oh, that's a good question. There's always been like a
running joke in my family that like every single time something
starts to improve, something goes really, really wrong.
And so it's like, I just like for years, you know, I was
diagnosed with elder Stanley syndrome when I was 1617, had to
(02:41):
get 2 rotator cuff surgeries, hip surgery, very invasive
surgeries. And then everything got better
and I was like, oh, like I'm, I'm in the clear.
I can live a normal life again. And then literally three weeks
after making that assessment, I was diagnosed with lupus and
dermatomyositis. So Oh my gosh, it's almost the
act of just constantly, like every time something improves,
(03:02):
like it's just several steps back.
But now and also nowadays it's like with dermatomyositis.
And I'll talk more about that when we talk about like my
diagnosis and stuff. It's just really unpredictable.
And in a way, the medication youhave to take for it is what
makes me the sickest because it's like, it does the job of
making sure that my immune system is not destroying my
(03:24):
lungs and destroying my kidneys and muscles and whatnot.
But then I get sick so easily and like I had pneumonia this
year and it was terrifying and I, I had to go on several rounds
of steroids and antibiotics because it just would not go
away. And like it's, that's, I think
the scary part last year I got like a severe infection.
(03:45):
My lymph nodes were so big that I couldn't breathe.
And like, and it's, and it's hard because it's, I like, I, if
I stop taking it, I get really sick.
But also the medication makes mesick.
And I know the type of sick thatI am while I'm on the medication
is better than the type of sick I would be off of it.
But it's, it's tough. It's really tough.
Right when you're in the moment,you're remembering how you're
(04:07):
feeling right now. Not like, oh, the other sick is
worse. You just don't have like the
reference right now. Exactly because it's, you know,
you get frustrated. But then I also have to remember
that I'm very, very lucky that this medication even works for
me because, right, things like azathioprine, which is when I'm
on methotrexate, they're very effective medications, but
they're also, you know, they're low dose chemo drugs.
(04:29):
Like they, they knock your immune system out.
And so yeah, and they're both, or the one I'm on, it's a Class
1 carcinogen because of how muchit screws up your immune system.
And so it's kind of a constant battle of like making sure
everything is good just to stay on this medication.
But at the same time, I'm very grateful because there's a lot
of people that don't respond well to these meds and just keep
(04:50):
getting sicker. And so I try not to complain
about it too much because I'm like, you know what?
In some ways, I'm very, very lucky.
Right. But isn't that the case with
every chronic illness? Is you're like, yes, I'm lucky
in the sense that I'm like not dead, but other than that it
still kind of sucks. Exactly like, you know,
sometimes I'll go on like the Reddit for lupus or myositis
(05:10):
just to kind of see and I've learned such good tips from
other people on there. And I like to just kind of look
around in the amount of times I've seen people post stuff like
I don't know what to do. Like I methotrexate isn't
working, is the European isn't working.
And I just feel, I, I can't imagine how that, how scary that
would be, you know, 'cause I mean, and I had dealt with that
for a few months when I first got sick, but it was like, in
(05:31):
the grand scheme of things, six months of like really bad
suffering and not having anything work is so much better
than like years of it. But at the same time, like you
said, it's, it still sucks. Like other people having it
worse doesn't make it does. Like other people suffering more
than me doesn't make my suffering go away, if that makes
sense. Yes, yeah.
It's tough, but it's so I try tohave like an equal amount of
(05:52):
gratefulness and real like realism about the fact that I'm
still sick. Yes, that is I think what
everyone needs to figure out is that good balance.
Exactly, because, you know, I don't want to ever this once I
start getting too woe is me, then it almost works against me.
Like I start to just get really depressed and like don't live my
life. But then if I start doing the
(06:13):
whole toxic positivity thing, I just, you know, that that
doesn't serve anybody. No, I get to.
And everybody. I feel like everyone in society
really pushes that, like, toxic positivity towards chronically
ill people. And it's just, it doesn't work.
Like, it's one thing to be optimistic and to be grateful
about, you know, having healthcare or have, you know,
(06:35):
having some things that maybe some other people don't have.
And like, I'll never be not grateful.
But also, like, being grateful isn't going to take away how
sick I am. It's just going to make it a
little easier to deal with. Yes, yeah, I hear you.
And that is, I think, very relatable to everyone listening.
I'm glad. But I really do like your answer
(06:57):
to like, what makes you the sickest is essentially I'm just
imagining in the movies, you know, when they're like, well,
it can't get any worse and then it rains.
I'm imagining that that is what you're explaining. 100% it's
I've really, really gotten better about not doing the whole
what could possibly go wrong? Because that quite literally my,
(07:17):
like, part of my diagnosis storywas me essentially saying, well,
what could possibly go wrong? And everything's perfect now
because my surgeon, who had fixed both my shoulders and my
hip after years and years I had,I had to quit dance when I was
younger because of how much painmy joints were in and stuff like
that. And so I remember asking him
kind of like, not even being serious, just throwing the
feeler out, like, hey, I'm in college, going back to school.
(07:40):
Can I take a dance class or two?Do you think that's OK?
He said honestly, yeah. And I remember that felt like
the best day of my life. Like I was sobbing my eyes out.
I was so happy. And I remember I tweeted I'm
never, ever going to be sad thissemester.
Ever. Oh no.
For some. Reason say that.
Why would I say that? I was getting so cocky with it.
(08:00):
I was like, Oh my God, everything's going to be
perfect. And I really learned a lesson
here about not putting all my eggs in one basket because, I
mean, even if I hadn't gotten sick, like, it still wouldn't
have fixed everything. But it was.
I didn't expect to hear it. And then, yeah, literally that
month since when I got diagnosedwith lupus neurontarasitis, and
I didn't expect that, I went fora checkup.
Yeah. So.
(08:21):
OK, that is actually like the perfect segue.
Can you tell me a little bit about your diagnosis story
'cause we kind of talked about it a little before we started
recording, but you were diagnosed with lupus and DM,
which is a long set of words that I can't pronounce, but I
would love if you could tell me about both.
Idiopathic myopathy, So and I have systemic lupus.
(08:42):
So I'll start with this story 'cause actually technically got
diagnosed with the months later,but lupus was the first
diagnosis. So essentially what happened was
I went to school in an area I went, I went to school in
Humboldt County and at the time there was no way to get up there
through a plane. And so you either had to drive
the 14 hours or you know, you would take a four hour flight to
San Fran and then drive the fouror five to Humboldt.
(09:04):
So I knew that, like, whenever Iwould come home for breaks, I
basically had to get all my medical stuff done here because
there's also not much healthcareout there.
So I go in for a checkup and that's all it was.
And I remember mentioning, yeah,you know, like I am getting a
bit of a rash on my face. But at the time I'd been
(09:26):
diagnosed with EDS and PCOS and skin issues are very common with
both. So a lot of the stuff I had been
having is symptoms for months prior.
I was just writing off as one ofthose two.
And which makes sense because both of those disorders are
very, there's like a lot of stuff and it's easy to kind of
miss certain things because of it.
So I remember I went in for thischeck up and I had like this red
(09:50):
rash here and I was noticing andthis was really what kind of
could be in that something mightbe up.
I used to have cystic hormonal acne because of my PCOS.
Luckily I'm on spironolactone now because that's not an issue.
But it was bad. It was really, really bad.
But something that I was noticing was my I would only get
them like on my chin and I was noticing that they were kind of
turning into scabs even if I didn't touch them.
(10:11):
You know, when you pick up your skin, pick your pimples, they
turn into a scab. So I wasn't picking up my skin.
They would just turn into that and then it started, what
started happening was I would just start developing these
weird deep scabs on this part ofmy face, like really deep in my
skin, like lesions essentially. And I'm, I'm, I just kept
writing it off like this is justmy acne uses PCOS, but something
(10:32):
was up. And so I bring that up to the
doctor and he's like, you know what?
I don't think you have lupus. Like, I don't think you have an
autoimmune issue, but because you're going to be going back up
to an area where there's no healthcare and you're not really
going to have much in that regard, I think I should do some
tests on you just to be safe. And so I said, yeah, no problem.
(10:55):
Like, 'cause I'm not thinking ofanything.
I'm not thinking of anything at all.
This was like right around New Year's, and I wasn't worried.
I remember leaving the doctor's appointment and just being like,
no, it's just better be safe than sorry, right?
Like, yeah, so bunch of bunch oftests.
And about two days later, I get a phone call and it's a nurse
(11:17):
from the clinic. And she says, Hey, we, you need
to come in. And I'm kind of like, what?
What do you mean? Like what?
She goes, we found some really concerning things in your blood
work. And I'm like, oh, like, I don't
remember. My heart dropped to my stomach
because I genuinely did not see it coming out.
(11:38):
And then she did something she shouldn't have done.
I now know she didn't have done this, but she did use the word
lupus and she did say something along the lines of like it, it's
pretty like adjacent to lupus orlook, it's looking like lupus.
She shouldn't have said that. She should have said autoimmune
or something. But she was just trying to be
nice and she was trying to install urgency in me because I
(11:58):
had to go home. I had to go back up to school
soon. So I went back in like 2 days
later and my doctor said, hey, yeah, so this does look like
lupus. You do.
I had some hormonal issues as well, but that was kind of the
main concern. And she, he said, we're going
to, you know, refer you to a rheumatologist ASAP because, you
know, you have to go back and she can be the one to formally
(12:20):
diagnose you because technicallydoctors, primary care doctors
can't diagnose lupus, only rheumatologist can.
But they can essentially say, hey, this looks like that,
right? So I go see this rheumatologist
And The funny thing is like a positive, a positive part of all
of this was like, my parents took this even rougher than I
did honestly. And or just as rough, I suppose.
(12:43):
And like I remember my dad was oversharing about what was
happening with me at the mechanics.
We were getting the car fixed and he was talking about how,
you know, his daughter just got diagnosed with lupus.
And then the guy, the mechanic said, oh, my wife has lupus.
She goes and sees this amazing rheumatologist and so my dad
goes, oh, what's her name? And it's the name of the doctor
that I was assigned. Oh my gosh.
(13:03):
So that was really special. So that at least made me feel a
lot better when I heard that, I was like, great.
So I am in good hands. OK, so I go in and sure enough,
she's wonderful. She also has an autoimmune
disease. So I feel like there's a lot of
there's a that's very powerful to have somebody that like knows
how it feels treating you instead of somebody who has
never dealt with what you've dealt with in your life.
And so that was wonderful. But yeah, it was terrifying.
(13:25):
Like, so I was tentatively diagnosed with lupus and that's
kind of a common thing that happens when you have certain
like labs that are showing an autoimmune disease.
A lot of the times they'll firstdiagnose you with lupus because
it's a very broad condition. And like while a lot of other
autoimmune diseases are much more specific.
And so I was diagnosed with that.
And I think the hardest part of all of it was that I had to go
(13:47):
back up to school and I was going to be away from my family
and like I was, that was really scary.
Like I didn't want to be by myself, but at the same time, I
knew that if it's that sad realization that like I knew
that if I wanted to transfer schools and be closer to be
home, like I had to finish the semester.
And so I made the decision to go.
(14:08):
My doctor was considering saying, you know, you should
probably stay. And I, my parents were really
pushing me to go. And so I was like, I'll go.
And I'm in a way, I'm very glad that I did.
But that's kind of when everything got really bad.
I at first thought, Oh, this is all it's going to be, right?
Like I'm once again famous last words like I'm this is if if I
(14:30):
was sick enough to get diagnosed, I'm like, it's not
going to get worse than this, right?
They just put me on Plaquenil. They just put me on these
medications. Everything's going to be fine.
And within a week or two of being back up at school, my face
started to peel off. Let's be so for real y'all.
We are fatigued. We are fatigued girlies.
We have brain fog and there is not much we can do about it
(14:53):
because that's just a part of having chronic illness
unfortunately. What if I told you that that was
not the case? Well, you know that like we
can't do anything about it. I am partnering with Brainzyme,
a energy and focus supplement made in Scotland.
So you know it's not USFDA mumbojumbo and it works to fight
(15:15):
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Anyway. I, it was, it was really gross
(15:40):
looking like I started to just get these lesions everywhere.
So the type of lesions I was getting on my chin we're now
popping up everywhere. And so I was getting them,
they're started down here and itkind of worked their way up and
then they were all over my eyelids.
And that was horrible because the skin on your eyelids is so
thin and sensitive. So even blinking hurt and, and
(16:00):
like, I just kept being like, oh, this is, this is fine.
This is fine. And it kept getting worse.
And then eventually this is where I felt like the universe
in a way was watching out for mebecause I was really struggling
and like I didn't have a car up there.
I didn't even drive at that time.
And my best friend who are just really had just become my best
(16:25):
friend. We had kind of just met up there
through the sorority I was in and she was an RA.
And then she got fired as an RA.And it was this horrible,
horrible thing that happened to her.
And I remember being heartbrokenfor her.
And she didn't have RA housing anymore.
And the same day that that happened, my other roommate
moved out. So she was able to move in.
(16:46):
And I like, I get really emotional talking about this,
but everything just worked out because right around the time
that happened was when I my entire face was like just
covered in these thick lesions. I was, I was, if I laughed, I
would bleed. And like, I was having a really
hard time breathing. Yeah.
And so I remember I sent pictures to my doctor through
(17:09):
the portal and said, hey, you know, what should I do?
And she goes, you need to go to the ER now.
Well, like, you need to go now. And I remember I texted Morgan
saying, my best friend, hey, youknow, this is happening, so I'm
not going to like, I forgot we had something we were going to
do that day. And she goes, I'm coming over
(17:29):
now, I'm taking you. And so she took me.
And that was when they treated me for an allergy.
The they didn't know they were looking at my face and thought I
had an allergy. So then I'm thinking, oh, it's
nothing like this is just an allergy.
This is not my disease at all. I'm just allergic to the
medication that I was prescribed, the Plaquenil.
But one thing my doctor said, and the doctors there said if
(17:50):
this gets worse, it's probably not an allergy.
Sure enough, it was not an allergy.
And I really wanted it to be because that's an easy way out,
right? Like, I can just stop taking the
medication. Yeah.
So no. So then I kept having to go back
to the ER because, you know, that was before telehealth and I
just, that was my only treatment.
And so I kept having to go back and go back and go back.
And they'd have to give me, you know, a bunch of steroids every
(18:11):
time. And I remember when I finally
came home for spring break was when they kind of started to get
a little bit more clued in aboutwhat was actually happening.
I that week, it was just one week, one week off.
And I remember every single weekday I had a doctor's
appointment, I had to get biopsies.
(18:31):
I had to get all types of like, just, you know, I, I couldn't
have any fun. Yeah.
And so I essentially, they're able to figure out a little bit
more, try to put me on somethingelse.
But at this time, they were justthrowing, like, the kitchen sink
at me, a bunch of different meds.
And like, nothing was working. The rash kept getting worse.
I kept having a hard time breathing.
I remember that was like the bigsymptom that I was really
(18:52):
noticing was like, why am I struggling to breathe?
Like, that's really weird. And so essentially, to make a
Long story short, this just continues.
And when May rolls around in theend of the semester, I got all
my good grades. I worked my ass off that
semester I took and that was thesemester I took 20 units.
Holy schnikeys, yeah. I took 20 units that semester so
(19:13):
of course this much I get sick. But hey, I got my unit cycle
transfer, so I was awesome. So I was able to transfer, but
it was that May when I was starting to kind of lose it,
like I was home and I was so frustrated.
I was like, I just want to have a good summer.
Like I'm on 60 milligrams of Prednisone.
I am and that destroyed me emotionally.
My face is feeling off. Like I feel like shit.
(19:35):
Like I and I looked so differentthan I did a few months prior.
Like I looked like a different person and I was just getting
really frustrated. And like that was when I go in.
This is where I get the dermatomyositis diagnosis and my
doctor's looking at me and I remember she's looking
particularly at the eyelid rash and she's like, wait a minute,
we're going to give you what's called a myositis panel.
(19:56):
A myositis panel is essentially they just see if you have any
myositis antibodies. And sure enough, I did, I have
the gel 1 antibody. And so that was a very, that was
the biggest relief of my life because they finally were able
to figure something out. And then that was when they
said, OK, well, we're going to put Johnny's theoprene.
We didn't, they didn't want to put me on that 'cause I was
living in like a dorm and. Immunosuppressants can be
(20:17):
really, really bad for people that live in like such close
quarters with other people, of course.
And so it was a little nerve wracking, especially cause like,
you know, hair loss, throwing upall the time.
But I did not give a shit. I was like just just.
You're like my face will look like a face.
Please just give me. I was like please, like I need
to, I need to get better. But because of the specific
(20:38):
antibody that I was diagnosed with, they were able to get
clued in on. I think something is up with her
lungs. The Joe One antibody is
particularly associated with interstitial lung disease and in
addition to myositis. And I actually don't have such
bad myositis like the muscle part, but I unfortunately I do
(20:58):
have. The lung stuff.
Yeah, and that's rare. That's the crazy part with
myositis is actually the ILD part's pretty rare, but of
course. Wow, the zebra full zebras.
Exactly. I was like, oh, cool, thank you,
thank you for that. Like, but it was, it was helpful
because that they were able to get me in very quickly for
pulmonary exam and they like looked at my lungs and I did
(21:19):
have scar tissue on my lungs on the right lower lobe.
And so everything is good for for a few years, every six
months I have to go get checked and luckily I had not moved
because things like pulmonary fibroids are kind of terminal if
they continue to grow all over your lungs.
But mine just stayed in place. So that was good until I got
(21:40):
pneumonia this year in the same spot that I have the I'll the
same spot I have the fibroids isexactly right.
I know I was like, seriously, I made a joke to the this is where
I need to stop. Made a joke to the doctor about,
well, hopefully it's not the lower right portion of my lungs.
And I remember the doctor walks back in in the ER room and goes
so it is the lower. Funny story, she.
(22:01):
Looked so guilty I was like it'sOK, we can laugh about it and
yeah so that's essentially how Igot diagnosed and it sucks
because I in January I lost all of my doctors because my.
Insurance. Insurance Blue Cross no longer
wanted to cover scripts so I lost all of them.
Same. Yeah, yeah, I literally lost the
(22:21):
endometriosis specialist that I have had for years.
And that's so hard to find. Which, well, same with yours.
You found that? Was that the rheumatologist that
the the mechanic was talking about?
Yeah, and like she was myositis even among rheumatologists is
like nobody knows about it. I every time I go to the, to the
emergency room, like looking to my file, people always make
(22:42):
comments on two things, the EDS and dermatomyositis, cause a lot
of people are just like, what isthat?
And I'm like, damn. Like it's, it's crazy.
And so now I'm, I'm scared a little to start over, but I am
seeing a new primary care doctorin like a week and then I am
seeing a rheumatologist in a month.
So I'm hoping that everything goes well and I'm that it's a
(23:03):
happy thing that ends up being worth it in the end.
But it's so frustrating because it's like you said, like it's so
hard to find people that actually specialize in your
condition. And especially with being a
woman, like we're not listen to,we're always told we're like
traumatic. Last year when I had been
hospitalized for that infection,the first day I was there, the
doctor essentially just kind of was like, you just have like a
(23:24):
mild infection. We're not even going to check
your white blood cell count. Like here's this, I go back the
next day. I'm not breathing because my
lymph node is this big. And luckily I have a female
doctor this time. And she, she takes my, my blood
cell count. She goes, this is the highest
blood cell count you've ever hadever.
This is really, really bad. And she gives me steroids and an
IV steroid. And sure enough, that's what
worked. So it sucks like it really does.
(23:46):
It's crazy. And so I'm really, I'm upset
about all of it, especially because it's, it doesn't have to
be like that. Like it's just greed.
It's greed on the insurance company's part.
It should, yeah. No, I know.
No, that's a whole, a whole thing.
I'm still so mad about it. I literally went in to see my
doctor and they were like, so did you get that, that that
(24:07):
letter about how like Blue Crossisn't covering scripts?
And I was like, yeah, but like it's fine.
Like I can just like I have appolike that's the whole point is
that I can technically still seeyou, It'll just be more
expensive. And they went no, no, like we
have to see you as like a self paid patient.
Like we won't even run your insurance.
Like we don't contract with Blue.
And I was like, what? What I was like, that's not how
(24:28):
that works. What's the point with PPO then?
I know the whole, I know my mom was like, what do you mean they
said that? And I was like, that's what they
said. And I was like, it just Oh my
God. Insurance.
I just, yeah, no, it's a whole thing and it's.
It's so bad, it's so infuriatingand it makes it just
disillusions the fuck out of me.I should not like every
chronically ill person I know has horrific horror stories with
(24:51):
insurance and that's that's not even the actual doctor they have
horror stories with because that's an entire.
Right. Of course, that's the gas
lighting that's been. Right.
Never mind having to deal with like shitty medical
professionals sometimes like insurance.
Like are you? Right.
You like have to learn how to write your appeal letters
because they're like, oh, that medication that you've been on
for six years and is the only one that you found that helps
(25:13):
you. We don't want to cover that
anymore. You're like, what do you what,
what do you mean? And they go try something
cheaper and you go, I already did.
And they go try it again. Oh my God, it's just.
It's so bad, it's so bad. And it it just like I, I guess I
just get so angry because like it's, it doesn't have to be this
way. Like it's not like this anywhere
else. Nope.
So. That's what makes me mad.
(25:33):
I'm like, it really does kill mehow your experience as a
chronically I'll person is so reliant on where you're born and
like what class you're born into.
And you know, I have clicked family members in Norway and
they never have to. They don't even have to think
about this. Why would they like?
Yeah, right. No, believe me, the amount of
people that I like interview in like Canada and the UK and like
(25:57):
yes, the wait list is longer anda lot of times they do have to
go private, but they also have the option to just like, OK, I
will just go to this doctor and in three months they will see me
exactly like yes, they still deal with the gaslighting, but
at this. Point like, and now where I'm
at, the wait lists are the longest they've ever been
apparently because everybody whofrom Blue Cross, I didn't think
(26:20):
about that and Oh my God, I was warned about this a few months
ago. The wait lists are insane.
It's so 'cause I'm, I'm going toUTSD now.
So it's, it's been real OK. I have one near my house which
has been helpful, but it's been actually, I have experienced a
lot better things with the like ER urgent care type doctors.
I've I've liked them a lot more but it's just frustrating to
(26:41):
have to switch 'cause I'm like Iwas perfectly happy with
everything like. Yeah, like, why do I?
OK, sorry, I like that was such a tangent, but I was like,
you're right. And you know what?
Respectfully, fuck Blue Cross. Exactly.
Like, wow, that is such like a crazy story to first of all, be
(27:04):
diagnosed with an already rare disease and be like, OK, so the
EDS must explain all my other symptoms and then have it be
that like, like, that's just so frustrating because also, yeah,
where you were going to college?Like, I have a friend who's
going to Humboldt and she talks about the same thing.
She's like, there's literally nodoctors around there.
There's nothing up there. She's like, there's a singular
McDonald's in town. Like, there's nothing.
(27:27):
And then have to come home and expect a regular doctor's
appointment just to find out that you have two more
conditions, one of them hella rare.
Exactly. It's it's frustrating and it was
just very unexpected. So I was just like, damn.
But you know what? The community I built when I was
up there when I got sick was incredible and really like
(27:47):
restored a lot of faith in humanity that I never really
had. Like the way that the people who
like, even people I kind of justmet were so kind to me and like,
and I really, and I think, you know, I always try to find
Silver Linings and things. And like, like I was talking
about my best friend Morgan. I we kind of saved each other
and like, and I never really sawit that way.
(28:08):
I never saw, because I always saw her as this very
responsible, like very, she keptme on track all the time.
She would make sure I got out ofbed, she would bring me food.
Like she was really just so kindto me.
But you know, she was going through a lot too.
And I was very glad that I got to also be there and have such a
great relationship with somebody.
And I don't think that ever would have happened if I hadn't
gone sick. So I just try to look at it that
(28:28):
way. That's really awesome.
Yeah, It really did work out, like you said, to have it.
Well, I mean, like, it sucks on both sides, but having it work
out and be like, OK, you need a place to say I need a friend
right now. This is going to work perfect.
Perfect. And I didn't even, you know, I'm
at the time when she moved in, Iwasn't even really thinking
about it. And then, like the day or two
later, my doctor was like, girl,you got to go like.
(28:49):
So yeah, it was. That was pretty good.
That was pretty good. Yeah.
OK, so I have kind of a questionbefore we move into maybe the
tips and tricks that you may have, but can I ask you to tell
me like exactly what the symptoms were that you were
experiencing for both lupus and DM?
(29:10):
Just because I know that there'slisteners out there, sometimes
you know what they hear and theygo, Oh my gosh, that's something
I can ask my doctor about. Absolutely.
And I'll also talk about the ones I experienced now because
my disease has changed on its head, like the stuff I
experienced a few years ago is very different than now.
So I've been really, it's been hard to really like get my hands
around like the, the way it's evolved, but.
(29:34):
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Click the Patreon link in the description to get access to
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(29:58):
talk about things that have to be cut from the main apps.
And did I mention that there's no ads?
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Give me a dollar and I will giveyou lots of cool stuff in
return. That's my pitch, anyway.
(30:24):
So it started really with the rash, like that was kind of
really like, what did it? But once again, you know, I kind
of wrote it off as like, well, I'm already diagnosed with a
condition that really effects myskin.
But yeah, the lesions, the rash essentially, especially with the
lesions were not coming from anywhere.
Like they just were like poppingup.
I wasn't touching my skin. It was weird.
I also remember I the breathing thing was really scary because
(30:48):
it was like, I don't really knowhow to describe it.
I have asthma. I grew up with asthma.
It's not like that. It's not like the type of like
shallow breath you get with asthma.
It was more like I had swallowedsomething, if that makes sense.
And it was hard to breathe around it.
And so it was like I couldn't really get enough oxygen into my
lungs. And now I know it was because
part of my lung was completely like covered in tissue, scar
(31:13):
tissue. And so that was kind of a big
one was like, it just, it kind of came out of nowhere and I had
a dry cough. And so it wasn't like your
typical like when you get sick. It was very dry.
It's kind of why I kept writing it off because I was like, well,
I don't know what's going on. The other things were I
remember, oh, I became extremelysensitive to the sun and
(31:35):
dramatomyositis is often called a sun allergy.
There are some people who have DM so bad that if they go in the
sun they'll have to go to the hospital like.
Oh my gosh, that one movie. Yes, yes, it's called the.
I know what you're sorry. I.
Was like Oh my gosh, the one with Belladorn, right?
Yes. And it's called like they call
it. Sometimes people call it like
vampire syndrome because luckilyI don't have it that badly, but
some people have that symptom where it's like they go out in
(31:55):
the sun and they're covered in lesions.
They're they have a stomach flare up all of a sudden, like
it's crazy. So luckily it wasn't that bad.
But I'm already a very pale person, so I don't really go out
in the sun much anyways. But I remember I would be in the
sun and like I would get a rash and I would get like this rash
on my chest, the shawl sign it'scalled.
And so I would get this weird little chest rash and like
(32:16):
couple. Yeah, it was a lot of skin
stuff. Like I feel like that's kind of
the first tell for a lot of people is like what's stuff
that's going wrong on your skin?And I also, so as time went on,
like some stuff I deal with now,God, there's kind of the last
few years, things have changed alot, but my lymph nodes now are
(32:37):
really get really swollen and get hard after like last what
happened last year, it was like both a flare up and an
infection. And so now when I have an issue,
this lymph node swells up and gets hard, which is super
annoying and like it compressed on my windpipe.
So that's a little nerve wracking.
Gosh, what else? Oh this no such thing as TMI
with medical stuff. But I got sick last summer and
(33:01):
during that time I did not pee for two days.
It was horrible and I and I had to pee.
It was painful like I my bladderwas full.
I thought I was going to die butI didn't want to.
I didn't think it was a big deal.
I was like I'm not going to the hospital.
I know I should have, but like Ididn't my mom at COPD and like I
didn't want to have to get in a car with her and like get her
sick potentially 'cause whateverthe fuck I had was demonic.
(33:21):
But like, and since then I now have issues where I sometimes
cannot pee and it's really, really annoying.
And that's related to my autoimmune issues and stuff.
And so now that's like a new thing that's a new involvement
that I have is like bladder issues and kidney issues.
Luckily, nothing too bad in terms of like, I don't have
(33:42):
like, kidney failure or anythinglike that, thank God.
But yeah, so that's tough. What else?
Oh, I'm knocking on wood becauseyou seem to have a bad traffic
saying things. I'm knocking on it too.
Sorry. You're right.
He. Said it and I was like hey wait,
I'm sorry. No, thank you.
I'm glad that you did. Someone has to do it for me,
'cause I do it all the time. But yeah.
(34:04):
And then I'm thinking what else,'cause there is a couple of
other things I just can never think at the top of my head.
God. Oh yeah, I get really, this is
very common. I get like Reynaud's and this is
super common. So you know, if all of a sudden
like you're smiley cold and yourfingers are like turning purple
or like white and, and you can'treally move them like that's,
that's a sign, Especially if you're in fucking San Diego,
(34:26):
Like because if you're, if your hands are getting corn overall
exactly. Like maybe if you lived in a
cold area, that might be a little bit less concerning.
But no, that's a big one that I've been getting.
Yeah, really just like a lot of skin issues.
And so now I don't really get like the lesions as much
anymore. But I kind of always have a
dramatomyositis. A big thing is like, you kind of
always have a bit of an eyelid rash, like you can't see it.
(34:47):
But when I try to put makeup on it, you can.
It'll sink into all the lines here and you can really tell,
like, and it almost looks like scar tissue.
And part of it is because, like,my, my skin is very scarred.
But yeah. And like always in the corner of
my eyes, I have like, a little rash and it really hurts
sometimes. Sometimes I can't wear any
makeup at all around my eyes because it will just burn and
like, really won't sink onto my skin.
What else? There's some there's another big
(35:09):
one the. Oh, the other day, this was a
first. I don't really get as much of
the myositis, thank God. Like my CK levels, I think
really only elevated high when Ilike first got the disease.
So that's a good thing. But the other day I did get
very, very sick. I was throwing up the entire
day. And that happens to me
sometimes. Like I used to have cyclical
vomiting syndromes. So now sometimes when I get like
(35:30):
a little sick or like for me, itwas like a flare up that will
happen. And I remember like the other
day I couldn't walk for a few hours.
My legs were like jello. It was the I've never
experienced that. It was really scary.
And I remember having to crawl around like, and my calves were
fine, but my arms were fine, butmy thighs weren't.
And that's typically where myositis hits.
(35:50):
So it was a little nerve wracking.
But yeah, so that's a big one. If you're suddenly getting a lot
of muscle weakness. I would definitely my biggest
advice to anybody who is like concerned, especially if you
have a combination of like muscle weakness, especially if
it's sudden skin rash, especially around the eyelids
called the heliotrope rash and then lung issues is there's also
a bunch of myositis disorders, not just dermatomyositis, but I
(36:13):
really suggest asking for a myositis panel to your doctor
because most doctors are not going to do that.
They're just not going to think they're going to think lupus
before they think myositis. They're going to think right,
multiple sclerosis even before they think of myositis.
And so you kind of have to ask like, and so that's what that's
my best advice. And it's, you know, better to be
safe than sorry. Like, yeah, it's rare, but it's
(36:33):
like, I would much rather, I'd much rather know that I'm
cleared than like not know if that makes sense.
So I that's like my best advice to anybody is just ask for a
myositis panel. Heck yeah.
It's an easy test. It's just like a quick blood
test. So, and hey, I mean, they say
that EDS is rare and there's so many people that I know now and
like the statistics are changingbecause people are like, Oh, my
(36:54):
thumbs are not supposed to do that.
Exactly, like I got diagnosed with EDS 10 years ago and at the
time I got diagnosed, I'd never heard of it.
And my surgeon was saying, you know, like you easily fit the
bill because he's like he would do orthopedic surgeons surgeries
on people's joints, but 99% of the surgeries he did were on
people who were either injured through sports or injured in
(37:16):
like an accident. And so I had neither of those.
I was just like that, you know, and so and it's just kind of all
my labrums tore. And so that was really what took
me to get diagnosed. And I remember him saying like,
I hardly ever see people with yes.
And so now I feel like it's muchmore common.
And most, most of the doctors I see have at least heard of it.
And now it's not considered, youknow, it's not classified at
(37:36):
least like hypermobility type, Idon't think is classified as
rare anymore because of how manypeople have it, it it went past
the quota of what's considered rare.
And I always wonder, like I wonder if myositis disorders are
the same. I think a lot of disorders are
like not diagnosing people. So it's like just ask your
doctor and be like, hey, I listened to this podcast
episode. This this person sounded like
(37:57):
they had a lot of my symptoms. Do you think this is it?
Exactly. And especially the myositis
panel, because that's not even like an invasive test.
It's just a quick blood test they can tack on to whatever
other blood work you're getting.So it's not even like you know,
and there's other tests that cando like CK levels and things,
which is also blood. But just like my diagnosis, I
didn't even need to get that, you know?
Thank you for answering that question.
Because I have a feeling that like at least one person
(38:19):
listening to this is gonna be like, oh, even if it's just like
for lupus, 'cause I know like, the butterfly rash is like a
super common one, but being like, oh, I can ask my doctor
for an autoimmune panel and thenask for more tests.
Literally leaning out like with the myositis pain.
I think it's such, I think it's so worth bringing up because
it's just such an easy test. Like it's just one blood test.
It's not like, you know, you have to go get like an EMG,
(38:40):
which you know, maybe later on in the line, like I have to get
EMG sometimes to make sure that I don't have severe muscle
involvement. But like, the actual diagnosis,
like the myositis panel can really do a whole lot of justice
for figuring out what's wrong with you.
And each myositis antibody can kind of indicate different
things that might happen to you.So that's how they were able to
figure out my lung issues was the Joe One antibody is
incredibly common with lung issues.
(39:01):
So yeah. Okay, that is good to know.
Now, the medication I'm on is a Class 1 carcinogen.
And the big reason is because ofskin cancer because it really,
really fights off your body's ability to, like, protect you
against the sun and things like that.
So I really take it seriously. And this year, you know, my
doctor was kind of saying, like,you don't spend much time in the
(39:23):
sun, right? And I said, no, like, I'll
somehow like, I'll spend like a couple minutes like during my
breaks at work and just like, no, like you, you shouldn't be
doing that. And I was very shocked by that.
And then I found out, did not really realize this.
I, I guess I was kind of thinking more of like a, just
from a cutaneous perspective, like of just my skin.
But no, like that can really 'cause systemic flare ups like
(39:43):
you can, you can go in the sun for all day and like you're, you
know, you'll, you'll be in the hospital a couple days later if
you're not careful. And I never realized that until
this year. And I was like, oh, that's why
that's, that explains a lot. So I've been spending a lot more
time out of the sun. I wear sunscreen everywhere I
go, even if it's cloudy. Especially when it's cloudy.
Exactly. A lot of people don't realize
(40:04):
that. And I think it my best advice to
anybody who has either of these disorders is like, regardless of
your skin tone, like you can have the deepest skin tone in
the world and still heavily be at risk.
And a lot of doctors don't really convey that to people who
are not pale. And I think that's very screwed
up. Like I think a lot of doctors
need to really be conveying thatto everybody equally, not just
people who are pale, because I mean, pale people are typically
(40:25):
used to staying out of the sun. So I think it's important.
I feel like a lot of in general,doctors are not as like aware of
things on darker skin tones, youknow, like it's, that's a huge
issue. A lot of people with lupus are
not diagnosed till years later because the doctors had never
seen a Mylar rash on somebody who has dark skin.
And that's really disturbing. Like that's horrible.
(40:47):
So that's the sun is like a big one and that's an easy one to
control for the most part. And so I appreciate that.
The other one is sleep. I think when I realized that
like sleep and rest because restalso you don't have to be asleep
to like for your body to heal. Even lying down on your bed for
a few hours can be really, really helpful.
I used to think that you had to be like asleep to really heal.
(41:09):
And like that's not true. You can be awake, you can be
watching something, even be writing, reading doesn't matter.
Like as prioritizing rest has been really helpful.
And for me, it is a bit of a slippery slope.
So if I spend too much time in bed, my brain starts to.
But yeah, I've been taking walksat night and so that helps
getting my body moving because Ican't go to the gym like I used
to. I can't do a lot of things, but
(41:31):
that helps. I think getting your body moving
if you can is really helpful. Even just if it's a 5 minute
walk, it's better than nothing and that has been helpful.
Sleeping, I try to go to bed really early and I try to make
sure that the meds I'm on don't impact my sleep because I have
noticed that I get really bad flare ups if I'm not sleeping.
So the other thing is allergy meds.
(41:52):
I have really bad allergies and they they've got really bad this
year and it's definitely relatedto my autoimmune issues.
So I've been taking like a combination of different allergy
meds. I've also noticed that's helped
my flare ups. So I don't know what the
connection is there. I mean, I guess it's like
either, like histamines are alsopart of your immune system, but
yeah, there's. That.
Can I ask which ones you're taking if you're comfortable
(42:12):
saying that? I'll have to look after because
I don't know the names of them. I'm on three or four different
ones. All of them are over the
counter. OK, love that.
I was just, I'm kind of thinkingI'm like, OK, if like that's a
combination that's working for you, someone else is going to be
ecstatic. Oh man, yeah, I wish I
remembered. They're allergy meds are really
helpful as long as I take them consistently.
The other thing is being very consistent about taking my
medications. I know that's a kind of a no
(42:34):
brainer, but it's really easy toforget.
And there's a couple other things that I've done that have
like really improved my life recently.
And then what else back on? I took like some vitamins and
supplements that are helpful. I take some good meds and I try
to be consistent with both because I feel like the second I
start feeling better, I'm like, Oh, maybe I don't need this.
And then it all starts over And I really, I feel like the
(42:57):
biggest thing that I've done to really help myself is like to be
very open and to be the kind of like own it, if that makes
sense, like because I don't looksick, quote UN quote.
I know that's like a subjective,but I, because I don't look sick
to most people, I have had to, you know, in the past kind of
(43:19):
defend myself about why I make certain decisions.
And like, now I just don't. Like, I, I have no problem
telling people about my condition.
My bosses all know and like, especially 'cause they kind of
have to like if something happens to me, like, and there
has been times where I've been in the hospital and had to miss
work and like, if they didn't know what was up with me, that
might not reflect very well on me.
And like when I was in school before every semester, I would
(43:42):
e-mail each of my professors andsay, hey, like, this is what I
have. It's a flaring condition.
So there's a chance that I'll, you know, not be able to tell
you in advance if I have to go to the hospital and things like
that. Then in general, I just don't
feel, I don't feel weird about talking about it anymore.
I don't really think there's a reason to.
And it's also really helped me alot and not having to explain
(44:02):
myself constantly and like, and for other people to kind of
understand. Like I tell my coworkers I'm
immunocompromised because I am so sick of people walking up to
me when they're super sick. And I'm like, no, no, I'm, I'm
on an immunosuppressant. I know I look sick.
I don't look sick, but like, no,if if you're like all snotty and
coughing, state the away from me.
Yeah. And I, my mom is COPD, so I have
(44:23):
no problem being like, yeah, I'mimmunocompromised.
My mom is COPD. Leave me the fuck alone.
Real. I work with a lot of old people
too, so that does kind of help because a lot of older people
are also trying, trying not to get sick.
But yeah, so I, I don't really have an issue with being open
and honest about it. And I feel like that takes away
a lot of stress for myself and not having to explain myself and
come up with all these excuses like, no, I just, I'm sick.
(44:45):
Like I'm, I'm, I have a, I'm having a flare up, things are
going wrong. It's fine.
But yeah, that's been that's been helpful.
I really like that. That's a good piece of advice to
essentially just be like, you don't owe anyone anything.
You can tell them the bare minimum.
You can tell them nothing. Exactly.
And it's been helpful to really say immunocompromised too,
because like sometimes I don't feel like telling people I have
(45:05):
lupus because because that's theone I always tell people because
nobody knows what the fucked my myositis is and most people know
what lupus is. So I can be like, yeah, I just
have lupus. But I don't always want to tell
people that, especially because a lot of older people, when they
hear it, they feel like, oh honey, like I'm so sorry.
And I'm like, I'm there's. Like we are not friends, we're
good. We are good.
Like I'm OK, but I also have, I also have had some very amazing
experiences with people whose kids just got diagnosed and have
(45:27):
come up to me at work and been like, hey, can you give me some
advice? And that has been, that has been
all, all very worth it. But yeah, it's one of those
things we're saying immuno compromised is pretty has been a
lot easier because somebody, somebody can get somebody can
have eczema and be immunocompromised if they're on
an immunosuppressing. You know, there's people who are
on things like dapsone for theireczema and that's
immunosuppressing, you know, maybe not as bad as stuff you
(45:50):
take for lupus or cancer or things like that.
But like it's not uncommon at all.
So that has been helpful. And like also immunocompromised
has now kind of been more of a catch all to describe like
anything that can make you more susceptible to getting sick.
So I think that's been pretty nice.
And so I tell people at my job, if you're sick, stay out of my
cubicle. I'm so serious, real like stay
the fuck out of my cubicle. And they do, but but I they
(46:13):
wouldn't have known to do that if I hadn't told them.
Right, 'cause a lot. Of people have no decorum when
it comes to like just coughing on you.
So I'm like, yeah, yeah, no, I'm, I'm nipping this in the bud
right now. Right.
I mean, in other countries like it's so especially in like Asian
countries, it's so normal. Like if you have a cold you wear
a mask versus here. Yeah, like that it's 'cause it's
a respect for like elders and things like that.
(46:36):
And luckily at my job, because there is a lot of older people,
people are getting a little bit better about the mask thing.
And also it's a hybrid job. So there's kind of a whole, if
you're sick, stay the fuck home.There was like a quote on
somebody's cubicle that was like, you're this is not
kindergarten, you don't get a Gold Star for coming to work
when sick. And I was like, oh, OK, like I
kind of like working here. I like working in a place where
(46:57):
like that's taken seriously. So that's actually pretty nice.
And being hybrid is nice so I don't have to lose out on work
when I'm sick. Right.
I feel like that's also a tip. It's a it's a hard it's, it's
hard to find a hybrid job, especially now for some reason.
But if you can find a job that is OK with you missing work and
like understands, it's like the best thing ever.
(47:18):
It really is. And like my last job was like a
full in person job until we all separated during winter break.
And when we all came back, I stayed out because everybody got
COVID. So I stayed out and then I ended
up working it out with the CEO that I would just be able to
work fully, fully remote. So that was really nice.
I've also learned, yeah, a lot of it because a lot of jobs
(47:40):
aren't out front remote or hybrid, you can kind of actually
get a lot of jobs, especially ifyou do all your stuff online to
go in that direction. And that's like my job, for
example, I've been able to, you know, work from home a lot more
than other people because, you know.
You're like, hey, I literally have to.
I have exactly and they're actually really good about it,
(48:01):
so that's been nice. Hey, if you're good at your job
it's usually fine. Yep.
Exactly like it's a lot easier to be in person cause a lot of
just a lot of talking to people,but like we have teams for a
reason and half the people are are offline or are out of the
office too. So it's like.
You know. Everybody's out of their office
different days 'cause you get topick your days.
So it's pretty nice. It's pretty nice.
(48:23):
I mean if anything, emojis I feel like are so helpful.
Right, exactly. I can make anything look
friendly so. I know I just add a little :)
And I'm like, please send me those reports please :) OK, OK,
thank you. I feel like those are actually
some good tips I like, I hope that other people are gonna get
(48:44):
something from this. I feel like even just learning
what these conditions are is helpful.
But then like you said, eczema is something that like they
could get information from this episode and be like, oh, good
idea. Like some of those people are
immunocompromised. If you're on, you have a bad
enough, like I know somebody who's on dapsone for it and like
that's technically still immunosuppressing.
So it's bigger. Immunosuppressed is like a lot
(49:06):
less or a lot more common than Iexpected.
Yeah, yeah. And I like what you said, 'cause
it is, it is kind of a umbrella term.
So saying immunocompromised. Which is cause like I know
medically it typically just means you either are on an
immunosuppressant or you have like an immunodeficiency virus.
But now like I feel like it's kind of been more of a catch all
to describe like things that like COPD for example, like my
(49:29):
mom because yes, his immune system typically suppressed
because of it. Not really.
But her ability to fight off a virus is because her lungs are
kind of messed up. Yeah.
So it's like, I like how that's kind of been more of like a
catch all term because I feel like it includes more people and
can be a little bit easier to protect people if more people
are aware of it. Yeah, Yeah, I completely agree.
(49:49):
OK, I have perhaps an odd question before we wrap up the
episode, but you were kind of saying that wearing sunscreen is
like super important to you. Do you have a particular
sunscreen that you would recommend so?
I OK, so I recommend anything from a Korean or Chinese brand
because so Western sunscreens only use UVB filters.
(50:09):
So it's actually not that protective.
It can protect against things like skin cancer, but it's not
gonna protect you against like aging or if you have an
autoimmune disease, it's not gonna protect you that much
against a flare up. So it's better than nothing,
obviously. But I do suggest any really any
brand is fine. Like I like the beauty of Joson
one, but the ones and now there's like regulations and out
(50:31):
the tariffs. I say get those.
Get those ASAP. Get those now.
Yeah, it's helpful. And I, I have noticed a massive
difference in my skin, like a lot of my scar tissue has faded.
Didn't know that's a good. Your skin looks beautiful.
Thank you. I appreciate that.
Because usually it doesn't. But yeah, I highly suggest like
Korean sunscreens. I think like Japanese and
Chinese sunscreens are pretty good too.
I'm just used to the Korean ones.
(50:53):
The centella ones are pretty good.
The beauty of Josong ones are pretty good.
And yeah, I wear those all the time.
And that's those are really meant for like your face and the
delicate skin. You can kind of wear whatever
you want on your body. I like the I go to TJ Maxx and I
get the God, what's there's thisone brand that's really it's
like the Super group and it's like a body sunscreen, but it's
(51:13):
so much cheaper. 2 GMA accent. So I have like three of them and
I wear them on my body. So that's what I wear on my
body, but on my neck and on my face I wear like a Korean
sunscreen. OK.
That's my number one suggestion is because they have way more UV
filters than them, so they're more protective.
OK, see, now I'm really glad that I asked that question
because I was like, OK, you've got it.
Like I feel like you would know.You would know the.
Best strong opinions? I have such strong opinions on
(51:34):
him once I found that out. And it's not to say that like,
Western sunscreens don't still protect you, but they're just
less protective I. Feel like that's the case with a
lot of things if you. Wanna get them for cheap?
Marshalls to Jim X Ross. I've been through all those
stories in the last few days andall of them have Crane
sunscreens, so yeah, head on over.
TJ Maxx sponsor us. No, I love TJ Maxx.
(51:55):
It's like the best news meander.And you're like, oh, I could use
a bowl shaped like a watermelon.Exactly.
I'm like, oh, more useless stuffI don't need, but perfect of
course, of course. OK, well thank you for sharing
all this. I know that I'm like asking
deeply personal questions and asking you to Share your story,
but I I feel like I learned a lot so I'm hoping other people
(52:15):
will as well. I hope so too.
That's ultimately like, I just hope at least one person can
benefit. Cause I think there's just a lot
of things like I've learned so much from other people and I've
learned so much from other chronically ill people.
That's why I'm always on like I go on the Reddit, I look up my
conditions on TikTok. So I'm like, is there any good
advice or information I can findout for many medical
professionals, any people who suffer from these conditions?
(52:35):
And half the time I do. So it's, it's really great.
And I feel like a big thing in the chronic illness community is
being open, because your openness can help other people.
Yeah, yeah, I completely agree. I mean, that's the the whole
point of the podcast. I love it.
Well, thank you for coming on the podcast.
For people who maybe want to connect with you personally, is
(52:56):
there somewhere they can do that?
Are you on social media? I'm on Instagram, my Instagram
is Avery dot Vaughan Vaughan andthen I have TikTok and it's
Keebler elfs but it's like instead of ELVES it's ELFS.
OK, yes, so. Yes.
So yes, you can follow me on either of those.
I like how you could like my brain was like Eli was like
(53:19):
right? And that is how you spell elfs.
Yeah. OK.
Wow. OK thank you.
I am so excited cause talking toyou has been such a pleasure.
Thank you. So listeners, that is all we
have for you today. We are gonna go record a bonus
episode if you would like to go listen to it.
But otherwise, I'm Clark, This is Avery, and this has been
(53:41):
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
(54:03):
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 may share a diagnosis
journey, symptoms, and treatmentplan, this is not medical
(54:25):
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, Avery to Chronically
(00:33):
the Sickest podcast. How are you today?
I'm pretty good. How are you?
I am doing well. I am so excited to be doing an
in person recording so thank youfor being here.
Thank you for having me. Well, to start us off, I wanted
to kind of ask, like, tell me a little bit about yourself.
So I'm Avery. I'm 25 and almost 26, which is
(00:55):
insane. I, it's so weird getting older,
but I am a technical writer, so I have like a hybrid, hybrid
job, which is very convenient when you're chronically ill, but
also very convenient in the sense that like when I was fully
remote, it was a lot easier for me to kind of fall back into
like depressive spirals and whatnot.
So it's actually been pretty nice.
(01:15):
It's very flexible, which I appreciate.
And gosh, what else? I live with my family.
I moved back in a couple years ago and it's actually been very,
very nice. I have a good relationship with
them now, which has been very helpful in regards to
everything. Oh gosh, what else?
Whenever people ask about me, it's always hard.
I love dogs. I have two and I was just
(01:36):
telling you about. That, yeah.
But I love dogs. I am very into fragrance and
perfume and things like that. Very into it, very into writing.
Like, I do a lot of creative writing.
Since I've been a tech writer, Ihaven't been writing quite as
much creatively 'cause I feel like I'm just so used to being
in front of a screen all the time.
But it's I've been writing sinceI was little, so that's always
(01:56):
been kind of like a saving gracefor me, regardless of where I am
in my life. So that's pretty nice.
God, what else? Yeah.
It's all I can think of right now is like an intro.
No, that's fair. That was really good.
Like, I feel like I got to know you as a person, what you do.
You're kind of, you know, dogs. OK, Thank you for telling me a
little bit about yourself. And I wanted to ask the big
(02:19):
question. What do you think makes you
chronically the sickest person you know?
Oh, that's a good question. There's always been like a
running joke in my family that like every single time something
starts to improve, something goes really, really wrong.
And so it's like, I just like for years, you know, I was
diagnosed with elder Stanley syndrome when I was 1617, had to
(02:41):
get 2 rotator cuff surgeries, hip surgery, very invasive
surgeries. And then everything got better
and I was like, oh, like I'm, I'm in the clear.
I can live a normal life again. And then literally three weeks
after making that assessment, I was diagnosed with lupus and
dermatomyositis. So Oh my gosh, it's almost the
act of just constantly, like every time something improves,
(03:02):
like it's just several steps back.
But now and also nowadays it's like with dermatomyositis.
And I'll talk more about that when we talk about like my
diagnosis and stuff. It's just really unpredictable.
And in a way, the medication youhave to take for it is what
makes me the sickest because it's like, it does the job of
making sure that my immune system is not destroying my
(03:24):
lungs and destroying my kidneys and muscles and whatnot.
But then I get sick so easily and like I had pneumonia this
year and it was terrifying and I, I had to go on several rounds
of steroids and antibiotics because it just would not go
away. And like it's, that's, I think
the scary part last year I got like a severe infection.
(03:45):
My lymph nodes were so big that I couldn't breathe.
And like, and it's, and it's hard because it's, I like, I, if
I stop taking it, I get really sick.
But also the medication makes mesick.
And I know the type of sick thatI am while I'm on the medication
is better than the type of sick I would be off of it.
But it's, it's tough. It's really tough.
Right when you're in the moment,you're remembering how you're
(04:07):
feeling right now. Not like, oh, the other sick is
worse. You just don't have like the
reference right now. Exactly because it's, you know,
you get frustrated. But then I also have to remember
that I'm very, very lucky that this medication even works for
me because, right, things like azathioprine, which is when I'm
on methotrexate, they're very effective medications, but
they're also, you know, they're low dose chemo drugs.
(04:29):
Like they, they knock your immune system out.
And so yeah, and they're both, or the one I'm on, it's a Class
1 carcinogen because of how muchit screws up your immune system.
And so it's kind of a constant battle of like making sure
everything is good just to stay on this medication.
But at the same time, I'm very grateful because there's a lot
of people that don't respond well to these meds and just keep
(04:50):
getting sicker. And so I try not to complain
about it too much because I'm like, you know what?
In some ways, I'm very, very lucky.
Right. But isn't that the case with
every chronic illness? Is you're like, yes, I'm lucky
in the sense that I'm like not dead, but other than that it
still kind of sucks. Exactly like, you know,
sometimes I'll go on like the Reddit for lupus or myositis
(05:10):
just to kind of see and I've learned such good tips from
other people on there. And I like to just kind of look
around in the amount of times I've seen people post stuff like
I don't know what to do. Like I methotrexate isn't
working, is the European isn't working.
And I just feel, I, I can't imagine how that, how scary that
would be, you know, 'cause I mean, and I had dealt with that
for a few months when I first got sick, but it was like, in
(05:31):
the grand scheme of things, six months of like really bad
suffering and not having anything work is so much better
than like years of it. But at the same time, like you
said, it's, it still sucks. Like other people having it
worse doesn't make it does. Like other people suffering more
than me doesn't make my suffering go away, if that makes
sense. Yes, yeah.
It's tough, but it's so I try tohave like an equal amount of
(05:52):
gratefulness and real like realism about the fact that I'm
still sick. Yes, that is I think what
everyone needs to figure out is that good balance.
Exactly, because, you know, I don't want to ever this once I
start getting too woe is me, then it almost works against me.
Like I start to just get really depressed and like don't live my
life. But then if I start doing the
(06:13):
whole toxic positivity thing, I just, you know, that that
doesn't serve anybody. No, I get to.
And everybody. I feel like everyone in society
really pushes that, like, toxic positivity towards chronically
ill people. And it's just, it doesn't work.
Like, it's one thing to be optimistic and to be grateful
about, you know, having healthcare or have, you know,
(06:35):
having some things that maybe some other people don't have.
And like, I'll never be not grateful.
But also, like, being grateful isn't going to take away how
sick I am. It's just going to make it a
little easier to deal with. Yes, yeah, I hear you.
And that is, I think, very relatable to everyone listening.
I'm glad. But I really do like your answer
(06:57):
to like, what makes you the sickest is essentially I'm just
imagining in the movies, you know, when they're like, well,
it can't get any worse and then it rains.
I'm imagining that that is what you're explaining. 100% it's
I've really, really gotten better about not doing the whole
what could possibly go wrong? Because that quite literally my,
(07:17):
like, part of my diagnosis storywas me essentially saying, well,
what could possibly go wrong? And everything's perfect now
because my surgeon, who had fixed both my shoulders and my
hip after years and years I had,I had to quit dance when I was
younger because of how much painmy joints were in and stuff like
that. And so I remember asking him
kind of like, not even being serious, just throwing the
feeler out, like, hey, I'm in college, going back to school.
(07:40):
Can I take a dance class or two?Do you think that's OK?
He said honestly, yeah. And I remember that felt like
the best day of my life. Like I was sobbing my eyes out.
I was so happy. And I remember I tweeted I'm
never, ever going to be sad thissemester.
Ever. Oh no.
For some. Reason say that.
Why would I say that? I was getting so cocky with it.
(08:00):
I was like, Oh my God, everything's going to be
perfect. And I really learned a lesson
here about not putting all my eggs in one basket because, I
mean, even if I hadn't gotten sick, like, it still wouldn't
have fixed everything. But it was.
I didn't expect to hear it. And then, yeah, literally that
month since when I got diagnosedwith lupus neurontarasitis, and
I didn't expect that, I went fora checkup.
Yeah. So.
(08:21):
OK, that is actually like the perfect segue.
Can you tell me a little bit about your diagnosis story
'cause we kind of talked about it a little before we started
recording, but you were diagnosed with lupus and DM,
which is a long set of words that I can't pronounce, but I
would love if you could tell me about both.
Idiopathic myopathy, So and I have systemic lupus.
(08:42):
So I'll start with this story 'cause actually technically got
diagnosed with the months later,but lupus was the first
diagnosis. So essentially what happened was
I went to school in an area I went, I went to school in
Humboldt County and at the time there was no way to get up there
through a plane. And so you either had to drive
the 14 hours or you know, you would take a four hour flight to
San Fran and then drive the fouror five to Humboldt.
(09:04):
So I knew that, like, whenever Iwould come home for breaks, I
basically had to get all my medical stuff done here because
there's also not much healthcareout there.
So I go in for a checkup and that's all it was.
And I remember mentioning, yeah,you know, like I am getting a
bit of a rash on my face. But at the time I'd been
(09:26):
diagnosed with EDS and PCOS and skin issues are very common with
both. So a lot of the stuff I had been
having is symptoms for months prior.
I was just writing off as one ofthose two.
And which makes sense because both of those disorders are
very, there's like a lot of stuff and it's easy to kind of
miss certain things because of it.
So I remember I went in for thischeck up and I had like this red
(09:50):
rash here and I was noticing andthis was really what kind of
could be in that something mightbe up.
I used to have cystic hormonal acne because of my PCOS.
Luckily I'm on spironolactone now because that's not an issue.
But it was bad. It was really, really bad.
But something that I was noticing was my I would only get
them like on my chin and I was noticing that they were kind of
turning into scabs even if I didn't touch them.
(10:11):
You know, when you pick up your skin, pick your pimples, they
turn into a scab. So I wasn't picking up my skin.
They would just turn into that and then it started, what
started happening was I would just start developing these
weird deep scabs on this part ofmy face, like really deep in my
skin, like lesions essentially. And I'm, I'm, I just kept
writing it off like this is justmy acne uses PCOS, but something
(10:32):
was up. And so I bring that up to the
doctor and he's like, you know what?
I don't think you have lupus. Like, I don't think you have an
autoimmune issue, but because you're going to be going back up
to an area where there's no healthcare and you're not really
going to have much in that regard, I think I should do some
tests on you just to be safe. And so I said, yeah, no problem.
(10:55):
Like, 'cause I'm not thinking ofanything.
I'm not thinking of anything at all.
This was like right around New Year's, and I wasn't worried.
I remember leaving the doctor's appointment and just being like,
no, it's just better be safe than sorry, right?
Like, yeah, so bunch of bunch oftests.
And about two days later, I get a phone call and it's a nurse
(11:17):
from the clinic. And she says, Hey, we, you need
to come in. And I'm kind of like, what?
What do you mean? Like what?
She goes, we found some really concerning things in your blood
work. And I'm like, oh, like, I don't
remember. My heart dropped to my stomach
because I genuinely did not see it coming out.
(11:38):
And then she did something she shouldn't have done.
I now know she didn't have done this, but she did use the word
lupus and she did say something along the lines of like it, it's
pretty like adjacent to lupus orlook, it's looking like lupus.
She shouldn't have said that. She should have said autoimmune
or something. But she was just trying to be
nice and she was trying to install urgency in me because I
(11:58):
had to go home. I had to go back up to school
soon. So I went back in like 2 days
later and my doctor said, hey, yeah, so this does look like
lupus. You do.
I had some hormonal issues as well, but that was kind of the
main concern. And she, he said, we're going
to, you know, refer you to a rheumatologist ASAP because, you
know, you have to go back and she can be the one to formally
(12:20):
diagnose you because technicallydoctors, primary care doctors
can't diagnose lupus, only rheumatologist can.
But they can essentially say, hey, this looks like that,
right? So I go see this rheumatologist
And The funny thing is like a positive, a positive part of all
of this was like, my parents took this even rougher than I
did honestly. And or just as rough, I suppose.
(12:43):
And like I remember my dad was oversharing about what was
happening with me at the mechanics.
We were getting the car fixed and he was talking about how,
you know, his daughter just got diagnosed with lupus.
And then the guy, the mechanic said, oh, my wife has lupus.
She goes and sees this amazing rheumatologist and so my dad
goes, oh, what's her name? And it's the name of the doctor
that I was assigned. Oh my gosh.
(13:03):
So that was really special. So that at least made me feel a
lot better when I heard that, I was like, great.
So I am in good hands. OK, so I go in and sure enough,
she's wonderful. She also has an autoimmune
disease. So I feel like there's a lot of
there's a that's very powerful to have somebody that like knows
how it feels treating you instead of somebody who has
never dealt with what you've dealt with in your life.
And so that was wonderful. But yeah, it was terrifying.
(13:25):
Like, so I was tentatively diagnosed with lupus and that's
kind of a common thing that happens when you have certain
like labs that are showing an autoimmune disease.
A lot of the times they'll firstdiagnose you with lupus because
it's a very broad condition. And like while a lot of other
autoimmune diseases are much more specific.
And so I was diagnosed with that.
And I think the hardest part of all of it was that I had to go
(13:47):
back up to school and I was going to be away from my family
and like I was, that was really scary.
Like I didn't want to be by myself, but at the same time, I
knew that if it's that sad realization that like I knew
that if I wanted to transfer schools and be closer to be
home, like I had to finish the semester.
And so I made the decision to go.
(14:08):
My doctor was considering saying, you know, you should
probably stay. And I, my parents were really
pushing me to go. And so I was like, I'll go.
And I'm in a way, I'm very glad that I did.
But that's kind of when everything got really bad.
I at first thought, Oh, this is all it's going to be, right?
Like I'm once again famous last words like I'm this is if if I
(14:30):
was sick enough to get diagnosed, I'm like, it's not
going to get worse than this, right?
They just put me on Plaquenil. They just put me on these
medications. Everything's going to be fine.
And within a week or two of being back up at school, my face
started to peel off. Let's be so for real y'all.
We are fatigued. We are fatigued girlies.
We have brain fog and there is not much we can do about it
(14:53):
because that's just a part of having chronic illness
unfortunately. What if I told you that that was
not the case? Well, you know that like we
can't do anything about it. I am partnering with Brainzyme,
a energy and focus supplement made in Scotland.
So you know it's not USFDA mumbojumbo and it works to fight
(15:15):
fatigue using natural ingredients which we love.
So if you are interested, go to Brainzyme dot US today and get
their trial pack with a money back guarantee plus some extra
money off with code sickest 10. It's a lifesaver I swear.
Anyway. I, it was, it was really gross
(15:40):
looking like I started to just get these lesions everywhere.
So the type of lesions I was getting on my chin we're now
popping up everywhere. And so I was getting them,
they're started down here and itkind of worked their way up and
then they were all over my eyelids.
And that was horrible because the skin on your eyelids is so
thin and sensitive. So even blinking hurt and, and
(16:00):
like, I just kept being like, oh, this is, this is fine.
This is fine. And it kept getting worse.
And then eventually this is where I felt like the universe
in a way was watching out for mebecause I was really struggling
and like I didn't have a car up there.
I didn't even drive at that time.
And my best friend who are just really had just become my best
(16:25):
friend. We had kind of just met up there
through the sorority I was in and she was an RA.
And then she got fired as an RA.And it was this horrible,
horrible thing that happened to her.
And I remember being heartbrokenfor her.
And she didn't have RA housing anymore.
And the same day that that happened, my other roommate
moved out. So she was able to move in.
(16:46):
And I like, I get really emotional talking about this,
but everything just worked out because right around the time
that happened was when I my entire face was like just
covered in these thick lesions. I was, I was, if I laughed, I
would bleed. And like, I was having a really
hard time breathing. Yeah.
And so I remember I sent pictures to my doctor through
(17:09):
the portal and said, hey, you know, what should I do?
And she goes, you need to go to the ER now.
Well, like, you need to go now. And I remember I texted Morgan
saying, my best friend, hey, youknow, this is happening, so I'm
not going to like, I forgot we had something we were going to
do that day. And she goes, I'm coming over
(17:29):
now, I'm taking you. And so she took me.
And that was when they treated me for an allergy.
The they didn't know they were looking at my face and thought I
had an allergy. So then I'm thinking, oh, it's
nothing like this is just an allergy.
This is not my disease at all. I'm just allergic to the
medication that I was prescribed, the Plaquenil.
But one thing my doctor said, and the doctors there said if
(17:50):
this gets worse, it's probably not an allergy.
Sure enough, it was not an allergy.
And I really wanted it to be because that's an easy way out,
right? Like, I can just stop taking the
medication. Yeah.
So no. So then I kept having to go back
to the ER because, you know, that was before telehealth and I
just, that was my only treatment.
And so I kept having to go back and go back and go back.
And they'd have to give me, you know, a bunch of steroids every
(18:11):
time. And I remember when I finally
came home for spring break was when they kind of started to get
a little bit more clued in aboutwhat was actually happening.
I that week, it was just one week, one week off.
And I remember every single weekday I had a doctor's
appointment, I had to get biopsies.
(18:31):
I had to get all types of like, just, you know, I, I couldn't
have any fun. Yeah.
And so I essentially, they're able to figure out a little bit
more, try to put me on somethingelse.
But at this time, they were justthrowing, like, the kitchen sink
at me, a bunch of different meds.
And like, nothing was working. The rash kept getting worse.
I kept having a hard time breathing.
I remember that was like the bigsymptom that I was really
(18:52):
noticing was like, why am I struggling to breathe?
Like, that's really weird. And so essentially, to make a
Long story short, this just continues.
And when May rolls around in theend of the semester, I got all
my good grades. I worked my ass off that
semester I took and that was thesemester I took 20 units.
Holy schnikeys, yeah. I took 20 units that semester so
(19:13):
of course this much I get sick. But hey, I got my unit cycle
transfer, so I was awesome. So I was able to transfer, but
it was that May when I was starting to kind of lose it,
like I was home and I was so frustrated.
I was like, I just want to have a good summer.
Like I'm on 60 milligrams of Prednisone.
I am and that destroyed me emotionally.
My face is feeling off. Like I feel like shit.
(19:35):
Like I and I looked so differentthan I did a few months prior.
Like I looked like a different person and I was just getting
really frustrated. And like that was when I go in.
This is where I get the dermatomyositis diagnosis and my
doctor's looking at me and I remember she's looking
particularly at the eyelid rash and she's like, wait a minute,
we're going to give you what's called a myositis panel.
(19:56):
A myositis panel is essentially they just see if you have any
myositis antibodies. And sure enough, I did, I have
the gel 1 antibody. And so that was a very, that was
the biggest relief of my life because they finally were able
to figure something out. And then that was when they
said, OK, well, we're going to put Johnny's theoprene.
We didn't, they didn't want to put me on that 'cause I was
living in like a dorm and. Immunosuppressants can be
(20:17):
really, really bad for people that live in like such close
quarters with other people, of course.
And so it was a little nerve wracking, especially cause like,
you know, hair loss, throwing upall the time.
But I did not give a shit. I was like just just.
You're like my face will look like a face.
Please just give me. I was like please, like I need
to, I need to get better. But because of the specific
(20:38):
antibody that I was diagnosed with, they were able to get
clued in on. I think something is up with her
lungs. The Joe One antibody is
particularly associated with interstitial lung disease and in
addition to myositis. And I actually don't have such
bad myositis like the muscle part, but I unfortunately I do
(20:58):
have. The lung stuff.
Yeah, and that's rare. That's the crazy part with
myositis is actually the ILD part's pretty rare, but of
course. Wow, the zebra full zebras.
Exactly. I was like, oh, cool, thank you,
thank you for that. Like, but it was, it was helpful
because that they were able to get me in very quickly for
pulmonary exam and they like looked at my lungs and I did
(21:19):
have scar tissue on my lungs on the right lower lobe.
And so everything is good for for a few years, every six
months I have to go get checked and luckily I had not moved
because things like pulmonary fibroids are kind of terminal if
they continue to grow all over your lungs.
But mine just stayed in place. So that was good until I got
(21:40):
pneumonia this year in the same spot that I have the I'll the
same spot I have the fibroids isexactly right.
I know I was like, seriously, I made a joke to the this is where
I need to stop. Made a joke to the doctor about,
well, hopefully it's not the lower right portion of my lungs.
And I remember the doctor walks back in in the ER room and goes
so it is the lower. Funny story, she.
(22:01):
Looked so guilty I was like it'sOK, we can laugh about it and
yeah so that's essentially how Igot diagnosed and it sucks
because I in January I lost all of my doctors because my.
Insurance. Insurance Blue Cross no longer
wanted to cover scripts so I lost all of them.
Same. Yeah, yeah, I literally lost the
(22:21):
endometriosis specialist that I have had for years.
And that's so hard to find. Which, well, same with yours.
You found that? Was that the rheumatologist that
the the mechanic was talking about?
Yeah, and like she was myositis even among rheumatologists is
like nobody knows about it. I every time I go to the, to the
emergency room, like looking to my file, people always make
(22:42):
comments on two things, the EDS and dermatomyositis, cause a lot
of people are just like, what isthat?
And I'm like, damn. Like it's, it's crazy.
And so now I'm, I'm scared a little to start over, but I am
seeing a new primary care doctorin like a week and then I am
seeing a rheumatologist in a month.
So I'm hoping that everything goes well and I'm that it's a
(23:03):
happy thing that ends up being worth it in the end.
But it's so frustrating because it's like you said, like it's so
hard to find people that actually specialize in your
condition. And especially with being a
woman, like we're not listen to,we're always told we're like
traumatic. Last year when I had been
hospitalized for that infection,the first day I was there, the
doctor essentially just kind of was like, you just have like a
(23:24):
mild infection. We're not even going to check
your white blood cell count. Like here's this, I go back the
next day. I'm not breathing because my
lymph node is this big. And luckily I have a female
doctor this time. And she, she takes my, my blood
cell count. She goes, this is the highest
blood cell count you've ever hadever.
This is really, really bad. And she gives me steroids and an
IV steroid. And sure enough, that's what
worked. So it sucks like it really does.
(23:46):
It's crazy. And so I'm really, I'm upset
about all of it, especially because it's, it doesn't have to
be like that. Like it's just greed.
It's greed on the insurance company's part.
It should, yeah. No, I know.
No, that's a whole, a whole thing.
I'm still so mad about it. I literally went in to see my
doctor and they were like, so did you get that, that that
(24:07):
letter about how like Blue Crossisn't covering scripts?
And I was like, yeah, but like it's fine.
Like I can just like I have appolike that's the whole point is
that I can technically still seeyou, It'll just be more
expensive. And they went no, no, like we
have to see you as like a self paid patient.
Like we won't even run your insurance.
Like we don't contract with Blue.
And I was like, what? What I was like, that's not how
(24:28):
that works. What's the point with PPO then?
I know the whole, I know my mom was like, what do you mean they
said that? And I was like, that's what they
said. And I was like, it just Oh my
God. Insurance.
I just, yeah, no, it's a whole thing and it's.
It's so bad, it's so infuriatingand it makes it just
disillusions the fuck out of me.I should not like every
chronically ill person I know has horrific horror stories with
(24:51):
insurance and that's that's not even the actual doctor they have
horror stories with because that's an entire.
Right. Of course, that's the gas
lighting that's been. Right.
Never mind having to deal with like shitty medical
professionals sometimes like insurance.
Like are you? Right.
You like have to learn how to write your appeal letters
because they're like, oh, that medication that you've been on
for six years and is the only one that you found that helps
(25:13):
you. We don't want to cover that
anymore. You're like, what do you what,
what do you mean? And they go try something
cheaper and you go, I already did.
And they go try it again. Oh my God, it's just.
It's so bad, it's so bad. And it it just like I, I guess I
just get so angry because like it's, it doesn't have to be this
way. Like it's not like this anywhere
else. Nope.
So. That's what makes me mad.
(25:33):
I'm like, it really does kill mehow your experience as a
chronically I'll person is so reliant on where you're born and
like what class you're born into.
And you know, I have clicked family members in Norway and
they never have to. They don't even have to think
about this. Why would they like?
Yeah, right. No, believe me, the amount of
people that I like interview in like Canada and the UK and like
(25:57):
yes, the wait list is longer anda lot of times they do have to
go private, but they also have the option to just like, OK, I
will just go to this doctor and in three months they will see me
exactly like yes, they still deal with the gaslighting, but
at this. Point like, and now where I'm
at, the wait lists are the longest they've ever been
apparently because everybody whofrom Blue Cross, I didn't think
(26:20):
about that and Oh my God, I was warned about this a few months
ago. The wait lists are insane.
It's so 'cause I'm, I'm going toUTSD now.
So it's, it's been real OK. I have one near my house which
has been helpful, but it's been actually, I have experienced a
lot better things with the like ER urgent care type doctors.
I've I've liked them a lot more but it's just frustrating to
(26:41):
have to switch 'cause I'm like Iwas perfectly happy with
everything like. Yeah, like, why do I?
OK, sorry, I like that was such a tangent, but I was like,
you're right. And you know what?
Respectfully, fuck Blue Cross. Exactly.
Like, wow, that is such like a crazy story to first of all, be
(27:04):
diagnosed with an already rare disease and be like, OK, so the
EDS must explain all my other symptoms and then have it be
that like, like, that's just so frustrating because also, yeah,
where you were going to college?Like, I have a friend who's
going to Humboldt and she talks about the same thing.
She's like, there's literally nodoctors around there.
There's nothing up there. She's like, there's a singular
McDonald's in town. Like, there's nothing.
(27:27):
And then have to come home and expect a regular doctor's
appointment just to find out that you have two more
conditions, one of them hella rare.
Exactly. It's it's frustrating and it was
just very unexpected. So I was just like, damn.
But you know what? The community I built when I was
up there when I got sick was incredible and really like
(27:47):
restored a lot of faith in humanity that I never really
had. Like the way that the people who
like, even people I kind of justmet were so kind to me and like,
and I really, and I think, you know, I always try to find
Silver Linings and things. And like, like I was talking
about my best friend Morgan. I we kind of saved each other
and like, and I never really sawit that way.
(28:08):
I never saw, because I always saw her as this very
responsible, like very, she keptme on track all the time.
She would make sure I got out ofbed, she would bring me food.
Like she was really just so kindto me.
But you know, she was going through a lot too.
And I was very glad that I got to also be there and have such a
great relationship with somebody.
And I don't think that ever would have happened if I hadn't
gone sick. So I just try to look at it that
(28:28):
way. That's really awesome.
Yeah, It really did work out, like you said, to have it.
Well, I mean, like, it sucks on both sides, but having it work
out and be like, OK, you need a place to say I need a friend
right now. This is going to work perfect.
Perfect. And I didn't even, you know, I'm
at the time when she moved in, Iwasn't even really thinking
about it. And then, like the day or two
later, my doctor was like, girl,you got to go like.
(28:49):
So yeah, it was. That was pretty good.
That was pretty good. Yeah.
OK, so I have kind of a questionbefore we move into maybe the
tips and tricks that you may have, but can I ask you to tell
me like exactly what the symptoms were that you were
experiencing for both lupus and DM?
(29:10):
Just because I know that there'slisteners out there, sometimes
you know what they hear and theygo, Oh my gosh, that's something
I can ask my doctor about. Absolutely.
And I'll also talk about the ones I experienced now because
my disease has changed on its head, like the stuff I
experienced a few years ago is very different than now.
So I've been really, it's been hard to really like get my hands
around like the, the way it's evolved, but.
(29:34):
This is your friendly reminder that you are listening to this
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other important topics for free.But this does cost time and
money to make, and you could be getting a lot more.
Click the Patreon link in the description to get access to
video episodes, free merch, and bonus interviews where we may
(29:58):
talk about things that have to be cut from the main apps.
And did I mention that there's no ads?
Not only do you get these very cool things, but you can also
support the pod because like I said, you're listening for free.
Give me a dollar and I will giveyou lots of cool stuff in
return. That's my pitch, anyway.
(30:24):
So it started really with the rash, like that was kind of
really like, what did it? But once again, you know, I kind
of wrote it off as like, well, I'm already diagnosed with a
condition that really effects myskin.
But yeah, the lesions, the rash essentially, especially with the
lesions were not coming from anywhere.
Like they just were like poppingup.
I wasn't touching my skin. It was weird.
I also remember I the breathing thing was really scary because
(30:48):
it was like, I don't really knowhow to describe it.
I have asthma. I grew up with asthma.
It's not like that. It's not like the type of like
shallow breath you get with asthma.
It was more like I had swallowedsomething, if that makes sense.
And it was hard to breathe around it.
And so it was like I couldn't really get enough oxygen into my
lungs. And now I know it was because
part of my lung was completely like covered in tissue, scar
(31:13):
tissue. And so that was kind of a big
one was like, it just, it kind of came out of nowhere and I had
a dry cough. And so it wasn't like your
typical like when you get sick. It was very dry.
It's kind of why I kept writing it off because I was like, well,
I don't know what's going on. The other things were I
remember, oh, I became extremelysensitive to the sun and
(31:35):
dramatomyositis is often called a sun allergy.
There are some people who have DM so bad that if they go in the
sun they'll have to go to the hospital like.
Oh my gosh, that one movie. Yes, yes, it's called the.
I know what you're sorry. I.
Was like Oh my gosh, the one with Belladorn, right?
Yes. And it's called like they call
it. Sometimes people call it like
vampire syndrome because luckilyI don't have it that badly, but
some people have that symptom where it's like they go out in
(31:55):
the sun and they're covered in lesions.
They're they have a stomach flare up all of a sudden, like
it's crazy. So luckily it wasn't that bad.
But I'm already a very pale person, so I don't really go out
in the sun much anyways. But I remember I would be in the
sun and like I would get a rash and I would get like this rash
on my chest, the shawl sign it'scalled.
And so I would get this weird little chest rash and like
(32:16):
couple. Yeah, it was a lot of skin
stuff. Like I feel like that's kind of
the first tell for a lot of people is like what's stuff
that's going wrong on your skin?And I also, so as time went on,
like some stuff I deal with now,God, there's kind of the last
few years, things have changed alot, but my lymph nodes now are
(32:37):
really get really swollen and get hard after like last what
happened last year, it was like both a flare up and an
infection. And so now when I have an issue,
this lymph node swells up and gets hard, which is super
annoying and like it compressed on my windpipe.
So that's a little nerve wracking.
Gosh, what else? Oh this no such thing as TMI
with medical stuff. But I got sick last summer and
(33:01):
during that time I did not pee for two days.
It was horrible and I and I had to pee.
It was painful like I my bladderwas full.
I thought I was going to die butI didn't want to.
I didn't think it was a big deal.
I was like I'm not going to the hospital.
I know I should have, but like Ididn't my mom at COPD and like I
didn't want to have to get in a car with her and like get her
sick potentially 'cause whateverthe fuck I had was demonic.
(33:21):
But like, and since then I now have issues where I sometimes
cannot pee and it's really, really annoying.
And that's related to my autoimmune issues and stuff.
And so now that's like a new thing that's a new involvement
that I have is like bladder issues and kidney issues.
Luckily, nothing too bad in terms of like, I don't have
(33:42):
like, kidney failure or anythinglike that, thank God.
But yeah, so that's tough. What else?
Oh, I'm knocking on wood becauseyou seem to have a bad traffic
saying things. I'm knocking on it too.
Sorry. You're right.
He. Said it and I was like hey wait,
I'm sorry. No, thank you.
I'm glad that you did. Someone has to do it for me,
'cause I do it all the time. But yeah.
(34:04):
And then I'm thinking what else,'cause there is a couple of
other things I just can never think at the top of my head.
God. Oh yeah, I get really, this is
very common. I get like Reynaud's and this is
super common. So you know, if all of a sudden
like you're smiley cold and yourfingers are like turning purple
or like white and, and you can'treally move them like that's,
that's a sign, Especially if you're in fucking San Diego,
(34:26):
Like because if you're, if your hands are getting corn overall
exactly. Like maybe if you lived in a
cold area, that might be a little bit less concerning.
But no, that's a big one that I've been getting.
Yeah, really just like a lot of skin issues.
And so now I don't really get like the lesions as much
anymore. But I kind of always have a
dramatomyositis. A big thing is like, you kind of
always have a bit of an eyelid rash, like you can't see it.
(34:47):
But when I try to put makeup on it, you can.
It'll sink into all the lines here and you can really tell,
like, and it almost looks like scar tissue.
And part of it is because, like,my, my skin is very scarred.
But yeah. And like always in the corner of
my eyes, I have like, a little rash and it really hurts
sometimes. Sometimes I can't wear any
makeup at all around my eyes because it will just burn and
like, really won't sink onto my skin.
What else? There's some there's another big
(35:09):
one the. Oh, the other day, this was a
first. I don't really get as much of
the myositis, thank God. Like my CK levels, I think
really only elevated high when Ilike first got the disease.
So that's a good thing. But the other day I did get
very, very sick. I was throwing up the entire
day. And that happens to me
sometimes. Like I used to have cyclical
vomiting syndromes. So now sometimes when I get like
(35:30):
a little sick or like for me, itwas like a flare up that will
happen. And I remember like the other
day I couldn't walk for a few hours.
My legs were like jello. It was the I've never
experienced that. It was really scary.
And I remember having to crawl around like, and my calves were
fine, but my arms were fine, butmy thighs weren't.
And that's typically where myositis hits.
(35:50):
So it was a little nerve wracking.
But yeah, so that's a big one. If you're suddenly getting a lot
of muscle weakness. I would definitely my biggest
advice to anybody who is like concerned, especially if you
have a combination of like muscle weakness, especially if
it's sudden skin rash, especially around the eyelids
called the heliotrope rash and then lung issues is there's also
a bunch of myositis disorders, not just dermatomyositis, but I
(36:13):
really suggest asking for a myositis panel to your doctor
because most doctors are not going to do that.
They're just not going to think they're going to think lupus
before they think myositis. They're going to think right,
multiple sclerosis even before they think of myositis.
And so you kind of have to ask like, and so that's what that's
my best advice. And it's, you know, better to be
safe than sorry. Like, yeah, it's rare, but it's
(36:33):
like, I would much rather, I'd much rather know that I'm
cleared than like not know if that makes sense.
So I that's like my best advice to anybody is just ask for a
myositis panel. Heck yeah.
It's an easy test. It's just like a quick blood
test. So, and hey, I mean, they say
that EDS is rare and there's so many people that I know now and
like the statistics are changingbecause people are like, Oh, my
(36:54):
thumbs are not supposed to do that.
Exactly, like I got diagnosed with EDS 10 years ago and at the
time I got diagnosed, I'd never heard of it.
And my surgeon was saying, you know, like you easily fit the
bill because he's like he would do orthopedic surgeons surgeries
on people's joints, but 99% of the surgeries he did were on
people who were either injured through sports or injured in
(37:16):
like an accident. And so I had neither of those.
I was just like that, you know, and so and it's just kind of all
my labrums tore. And so that was really what took
me to get diagnosed. And I remember him saying like,
I hardly ever see people with yes.
And so now I feel like it's muchmore common.
And most, most of the doctors I see have at least heard of it.
And now it's not considered, youknow, it's not classified at
(37:36):
least like hypermobility type, Idon't think is classified as
rare anymore because of how manypeople have it, it it went past
the quota of what's considered rare.
And I always wonder, like I wonder if myositis disorders are
the same. I think a lot of disorders are
like not diagnosing people. So it's like just ask your
doctor and be like, hey, I listened to this podcast
episode. This this person sounded like
(37:57):
they had a lot of my symptoms. Do you think this is it?
Exactly. And especially the myositis
panel, because that's not even like an invasive test.
It's just a quick blood test they can tack on to whatever
other blood work you're getting.So it's not even like you know,
and there's other tests that cando like CK levels and things,
which is also blood. But just like my diagnosis, I
didn't even need to get that, you know?
Thank you for answering that question.
Because I have a feeling that like at least one person
(38:19):
listening to this is gonna be like, oh, even if it's just like
for lupus, 'cause I know like, the butterfly rash is like a
super common one, but being like, oh, I can ask my doctor
for an autoimmune panel and thenask for more tests.
Literally leaning out like with the myositis pain.
I think it's such, I think it's so worth bringing up because
it's just such an easy test. Like it's just one blood test.
It's not like, you know, you have to go get like an EMG,
(38:40):
which you know, maybe later on in the line, like I have to get
EMG sometimes to make sure that I don't have severe muscle
involvement. But like, the actual diagnosis,
like the myositis panel can really do a whole lot of justice
for figuring out what's wrong with you.
And each myositis antibody can kind of indicate different
things that might happen to you.So that's how they were able to
figure out my lung issues was the Joe One antibody is
incredibly common with lung issues.
(39:01):
So yeah. Okay, that is good to know.
Now, the medication I'm on is a Class 1 carcinogen.
And the big reason is because ofskin cancer because it really,
really fights off your body's ability to, like, protect you
against the sun and things like that.
So I really take it seriously. And this year, you know, my
doctor was kind of saying, like,you don't spend much time in the
(39:23):
sun, right? And I said, no, like, I'll
somehow like, I'll spend like a couple minutes like during my
breaks at work and just like, no, like you, you shouldn't be
doing that. And I was very shocked by that.
And then I found out, did not really realize this.
I, I guess I was kind of thinking more of like a, just
from a cutaneous perspective, like of just my skin.
But no, like that can really 'cause systemic flare ups like
(39:43):
you can, you can go in the sun for all day and like you're, you
know, you'll, you'll be in the hospital a couple days later if
you're not careful. And I never realized that until
this year. And I was like, oh, that's why
that's, that explains a lot. So I've been spending a lot more
time out of the sun. I wear sunscreen everywhere I
go, even if it's cloudy. Especially when it's cloudy.
Exactly. A lot of people don't realize
(40:04):
that. And I think it my best advice to
anybody who has either of these disorders is like, regardless of
your skin tone, like you can have the deepest skin tone in
the world and still heavily be at risk.
And a lot of doctors don't really convey that to people who
are not pale. And I think that's very screwed
up. Like I think a lot of doctors
need to really be conveying thatto everybody equally, not just
people who are pale, because I mean, pale people are typically
(40:25):
used to staying out of the sun. So I think it's important.
I feel like a lot of in general,doctors are not as like aware of
things on darker skin tones, youknow, like it's, that's a huge
issue. A lot of people with lupus are
not diagnosed till years later because the doctors had never
seen a Mylar rash on somebody who has dark skin.
And that's really disturbing. Like that's horrible.
(40:47):
So that's the sun is like a big one and that's an easy one to
control for the most part. And so I appreciate that.
The other one is sleep. I think when I realized that
like sleep and rest because restalso you don't have to be asleep
to like for your body to heal. Even lying down on your bed for
a few hours can be really, really helpful.
I used to think that you had to be like asleep to really heal.
(41:09):
And like that's not true. You can be awake, you can be
watching something, even be writing, reading doesn't matter.
Like as prioritizing rest has been really helpful.
And for me, it is a bit of a slippery slope.
So if I spend too much time in bed, my brain starts to.
But yeah, I've been taking walksat night and so that helps
getting my body moving because Ican't go to the gym like I used
to. I can't do a lot of things, but
(41:31):
that helps. I think getting your body moving
if you can is really helpful. Even just if it's a 5 minute
walk, it's better than nothing and that has been helpful.
Sleeping, I try to go to bed really early and I try to make
sure that the meds I'm on don't impact my sleep because I have
noticed that I get really bad flare ups if I'm not sleeping.
So the other thing is allergy meds.
(41:52):
I have really bad allergies and they they've got really bad this
year and it's definitely relatedto my autoimmune issues.
So I've been taking like a combination of different allergy
meds. I've also noticed that's helped
my flare ups. So I don't know what the
connection is there. I mean, I guess it's like
either, like histamines are alsopart of your immune system, but
yeah, there's. That.
Can I ask which ones you're taking if you're comfortable
(42:12):
saying that? I'll have to look after because
I don't know the names of them. I'm on three or four different
ones. All of them are over the
counter. OK, love that.
I was just, I'm kind of thinkingI'm like, OK, if like that's a
combination that's working for you, someone else is going to be
ecstatic. Oh man, yeah, I wish I
remembered. They're allergy meds are really
helpful as long as I take them consistently.
The other thing is being very consistent about taking my
medications. I know that's a kind of a no
(42:34):
brainer, but it's really easy toforget.
And there's a couple other things that I've done that have
like really improved my life recently.
And then what else back on? I took like some vitamins and
supplements that are helpful. I take some good meds and I try
to be consistent with both because I feel like the second I
start feeling better, I'm like, Oh, maybe I don't need this.
And then it all starts over And I really, I feel like the
(42:57):
biggest thing that I've done to really help myself is like to be
very open and to be the kind of like own it, if that makes
sense, like because I don't looksick, quote UN quote.
I know that's like a subjective,but I, because I don't look sick
to most people, I have had to, you know, in the past kind of
(43:19):
defend myself about why I make certain decisions.
And like, now I just don't. Like, I, I have no problem
telling people about my condition.
My bosses all know and like, especially 'cause they kind of
have to like if something happens to me, like, and there
has been times where I've been in the hospital and had to miss
work and like, if they didn't know what was up with me, that
might not reflect very well on me.
And like when I was in school before every semester, I would
(43:42):
e-mail each of my professors andsay, hey, like, this is what I
have. It's a flaring condition.
So there's a chance that I'll, you know, not be able to tell
you in advance if I have to go to the hospital and things like
that. Then in general, I just don't
feel, I don't feel weird about talking about it anymore.
I don't really think there's a reason to.
And it's also really helped me alot and not having to explain
(44:02):
myself constantly and like, and for other people to kind of
understand. Like I tell my coworkers I'm
immunocompromised because I am so sick of people walking up to
me when they're super sick. And I'm like, no, no, I'm, I'm
on an immunosuppressant. I know I look sick.
I don't look sick, but like, no,if if you're like all snotty and
coughing, state the away from me.
Yeah. And I, my mom is COPD, so I have
(44:23):
no problem being like, yeah, I'mimmunocompromised.
My mom is COPD. Leave me the fuck alone.
Real. I work with a lot of old people
too, so that does kind of help because a lot of older people
are also trying, trying not to get sick.
But yeah, so I, I don't really have an issue with being open
and honest about it. And I feel like that takes away
a lot of stress for myself and not having to explain myself and
come up with all these excuses like, no, I just, I'm sick.
(44:45):
Like I'm, I'm, I have a, I'm having a flare up, things are
going wrong. It's fine.
But yeah, that's been that's been helpful.
I really like that. That's a good piece of advice to
essentially just be like, you don't owe anyone anything.
You can tell them the bare minimum.
You can tell them nothing. Exactly.
And it's been helpful to really say immunocompromised too,
because like sometimes I don't feel like telling people I have
(45:05):
lupus because because that's theone I always tell people because
nobody knows what the fucked my myositis is and most people know
what lupus is. So I can be like, yeah, I just
have lupus. But I don't always want to tell
people that, especially because a lot of older people, when they
hear it, they feel like, oh honey, like I'm so sorry.
And I'm like, I'm there's. Like we are not friends, we're
good. We are good.
Like I'm OK, but I also have, I also have had some very amazing
experiences with people whose kids just got diagnosed and have
(45:27):
come up to me at work and been like, hey, can you give me some
advice? And that has been, that has been
all, all very worth it. But yeah, it's one of those
things we're saying immuno compromised is pretty has been a
lot easier because somebody, somebody can get somebody can
have eczema and be immunocompromised if they're on
an immunosuppressing. You know, there's people who are
on things like dapsone for theireczema and that's
immunosuppressing, you know, maybe not as bad as stuff you
(45:50):
take for lupus or cancer or things like that.
But like it's not uncommon at all.
So that has been helpful. And like also immunocompromised
has now kind of been more of a catch all to describe like
anything that can make you more susceptible to getting sick.
So I think that's been pretty nice.
And so I tell people at my job, if you're sick, stay out of my
cubicle. I'm so serious, real like stay
the fuck out of my cubicle. And they do, but but I they
(46:13):
wouldn't have known to do that if I hadn't told them.
Right, 'cause a lot. Of people have no decorum when
it comes to like just coughing on you.
So I'm like, yeah, yeah, no, I'm, I'm nipping this in the bud
right now. Right.
I mean, in other countries like it's so especially in like Asian
countries, it's so normal. Like if you have a cold you wear
a mask versus here. Yeah, like that it's 'cause it's
a respect for like elders and things like that.
(46:36):
And luckily at my job, because there is a lot of older people,
people are getting a little bit better about the mask thing.
And also it's a hybrid job. So there's kind of a whole, if
you're sick, stay the fuck home.There was like a quote on
somebody's cubicle that was like, you're this is not
kindergarten, you don't get a Gold Star for coming to work
when sick. And I was like, oh, OK, like I
kind of like working here. I like working in a place where
(46:57):
like that's taken seriously. So that's actually pretty nice.
And being hybrid is nice so I don't have to lose out on work
when I'm sick. Right.
I feel like that's also a tip. It's a it's a hard it's, it's
hard to find a hybrid job, especially now for some reason.
But if you can find a job that is OK with you missing work and
like understands, it's like the best thing ever.
(47:18):
It really is. And like my last job was like a
full in person job until we all separated during winter break.
And when we all came back, I stayed out because everybody got
COVID. So I stayed out and then I ended
up working it out with the CEO that I would just be able to
work fully, fully remote. So that was really nice.
I've also learned, yeah, a lot of it because a lot of jobs
(47:40):
aren't out front remote or hybrid, you can kind of actually
get a lot of jobs, especially ifyou do all your stuff online to
go in that direction. And that's like my job, for
example, I've been able to, you know, work from home a lot more
than other people because, you know.
You're like, hey, I literally have to.
I have exactly and they're actually really good about it,
(48:01):
so that's been nice. Hey, if you're good at your job
it's usually fine. Yep.
Exactly like it's a lot easier to be in person cause a lot of
just a lot of talking to people,but like we have teams for a
reason and half the people are are offline or are out of the
office too. So it's like.
You know. Everybody's out of their office
different days 'cause you get topick your days.
So it's pretty nice. It's pretty nice.
(48:23):
I mean if anything, emojis I feel like are so helpful.
Right, exactly. I can make anything look
friendly so. I know I just add a little :)
And I'm like, please send me those reports please :) OK, OK,
thank you. I feel like those are actually
some good tips I like, I hope that other people are gonna get
(48:44):
something from this. I feel like even just learning
what these conditions are is helpful.
But then like you said, eczema is something that like they
could get information from this episode and be like, oh, good
idea. Like some of those people are
immunocompromised. If you're on, you have a bad
enough, like I know somebody who's on dapsone for it and like
that's technically still immunosuppressing.
So it's bigger. Immunosuppressed is like a lot
(49:06):
less or a lot more common than Iexpected.
Yeah, yeah. And I like what you said, 'cause
it is, it is kind of a umbrella term.
So saying immunocompromised. Which is cause like I know
medically it typically just means you either are on an
immunosuppressant or you have like an immunodeficiency virus.
But now like I feel like it's kind of been more of a catch all
to describe like things that like COPD for example, like my
(49:29):
mom because yes, his immune system typically suppressed
because of it. Not really.
But her ability to fight off a virus is because her lungs are
kind of messed up. Yeah.
So it's like, I like how that's kind of been more of like a
catch all term because I feel like it includes more people and
can be a little bit easier to protect people if more people
are aware of it. Yeah, Yeah, I completely agree.
(49:49):
OK, I have perhaps an odd question before we wrap up the
episode, but you were kind of saying that wearing sunscreen is
like super important to you. Do you have a particular
sunscreen that you would recommend so?
I OK, so I recommend anything from a Korean or Chinese brand
because so Western sunscreens only use UVB filters.
(50:09):
So it's actually not that protective.
It can protect against things like skin cancer, but it's not
gonna protect you against like aging or if you have an
autoimmune disease, it's not gonna protect you that much
against a flare up. So it's better than nothing,
obviously. But I do suggest any really any
brand is fine. Like I like the beauty of Joson
one, but the ones and now there's like regulations and out
(50:31):
the tariffs. I say get those.
Get those ASAP. Get those now.
Yeah, it's helpful. And I, I have noticed a massive
difference in my skin, like a lot of my scar tissue has faded.
Didn't know that's a good. Your skin looks beautiful.
Thank you. I appreciate that.
Because usually it doesn't. But yeah, I highly suggest like
Korean sunscreens. I think like Japanese and
Chinese sunscreens are pretty good too.
I'm just used to the Korean ones.
(50:53):
The centella ones are pretty good.
The beauty of Josong ones are pretty good.
And yeah, I wear those all the time.
And that's those are really meant for like your face and the
delicate skin. You can kind of wear whatever
you want on your body. I like the I go to TJ Maxx and I
get the God, what's there's thisone brand that's really it's
like the Super group and it's like a body sunscreen, but it's
(51:13):
so much cheaper. 2 GMA accent. So I have like three of them and
I wear them on my body. So that's what I wear on my
body, but on my neck and on my face I wear like a Korean
sunscreen. OK.
That's my number one suggestion is because they have way more UV
filters than them, so they're more protective.
OK, see, now I'm really glad that I asked that question
because I was like, OK, you've got it.
Like I feel like you would know.You would know the.
Best strong opinions? I have such strong opinions on
(51:34):
him once I found that out. And it's not to say that like,
Western sunscreens don't still protect you, but they're just
less protective I. Feel like that's the case with a
lot of things if you. Wanna get them for cheap?
Marshalls to Jim X Ross. I've been through all those
stories in the last few days andall of them have Crane
sunscreens, so yeah, head on over.
TJ Maxx sponsor us. No, I love TJ Maxx.
(51:55):
It's like the best news meander.And you're like, oh, I could use
a bowl shaped like a watermelon.Exactly.
I'm like, oh, more useless stuffI don't need, but perfect of
course, of course. OK, well thank you for sharing
all this. I know that I'm like asking
deeply personal questions and asking you to Share your story,
but I I feel like I learned a lot so I'm hoping other people
(52:15):
will as well. I hope so too.
That's ultimately like, I just hope at least one person can
benefit. Cause I think there's just a lot
of things like I've learned so much from other people and I've
learned so much from other chronically ill people.
That's why I'm always on like I go on the Reddit, I look up my
conditions on TikTok. So I'm like, is there any good
advice or information I can findout for many medical
professionals, any people who suffer from these conditions?
(52:35):
And half the time I do. So it's, it's really great.
And I feel like a big thing in the chronic illness community is
being open, because your openness can help other people.
Yeah, yeah, I completely agree. I mean, that's the the whole
point of the podcast. I love it.
Well, thank you for coming on the podcast.
For people who maybe want to connect with you personally, is
(52:56):
there somewhere they can do that?
Are you on social media? I'm on Instagram, my Instagram
is Avery dot Vaughan Vaughan andthen I have TikTok and it's
Keebler elfs but it's like instead of ELVES it's ELFS.
OK, yes, so. Yes.
So yes, you can follow me on either of those.
I like how you could like my brain was like Eli was like
(53:19):
right? And that is how you spell elfs.
Yeah. OK.
Wow. OK thank you.
I am so excited cause talking toyou has been such a pleasure.
Thank you. So listeners, that is all we
have for you today. We are gonna go record a bonus
episode if you would like to go listen to it.
But otherwise, I'm Clark, This is Avery, and this has been
(53:41):
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
(54:03):
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 may share a diagnosis
journey, symptoms, and treatmentplan, this is not medical
(54:25):
advice. If you have any questions
regarding your health, please reach out to your doctor and
have a great day.
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