hi. sorry i disappeared. here is a very big post about my health cross-posted from my blog (it was part of a series of posts where i kept track of trying to fix what i thought was a leg problem):
this has been the most convoluted ass journey to figure out
what’s wrong with me (physically). but despite all odds and many, many
months later, i have a definitive(ish) answer: palindromic rheumatism.
“what the fuck is that?” you might be asking. its basically
the diet version of an autoimmune disease. proto-rhuematoid arthritis in
some cases.
here is the short version: i have an autoimmune disorder
similar to rheumatoid arthritis but with a better prognosis: no long
term damage to my joints unless it progresses to RA (the stats on this
are all over the place). this makes drawing difficult-ish until im on a
treatment plan for it. i am not stopping making the comic, but may have
to acknowledge that im not going to make deadlines as easily as i once
did due to the realities of my health. thank you to everyone who has
been a kind ear during this time when ive been extremely anxious about
what an autoimmune diagnosis would mean for my job/hobby/passion. thank
you to everyone who financially supported me in spite of my
unreliability these past few months. i have said this a lot in public
lately, because i’m still pretty gobsmacked by it: i genuinely did not
realize i was in unusual pain, primarily because i was not aware that
how i felt was not normal. i had assumed random aches and pains were
part of the experience of having a human body or a result of me doing
something wrong.
longer version: ok remember when this was about
straightening my leg out. i don’t care about that shit any more. they
can turn backwards now, whatever. the timeline of events has been
roughly this:
- my fucking legs and knees hurt so bad when i climb stairs or walk up
a hill. the muscles burn. this is not normal for someone at my age. i
need to make sure my circulation is ok or im not getting diabetes.
- adam and i watch a video from a video game guy we like who talks
about having a mystery illness with annoyingly vague but chronic
symptoms: headaches, pains, fatigue, etc. i say “that’s just what it
feels like to have a human body. i don’t think doctors can fix that”.
adam is baffled by this comment, which i thought was something all of
humanity agreed upon: it hurts to be alive and it fucking sucks. i run
this up the flagpole and the vast majority of people i talked to do not,
in fact, suffer regularly. ummmm. ok. just me then.
- get diagnosed with funky shaped kneecap and tight hip flexors.
continue to try to do mild exercises but get winded VERY easily and have
trouble catching my breath. getting really worried about my heart now. i
feel very lazy and stupid for struggling this bad with something so
basic when i am reasonably able-bodied.
- go on a trip to dc for 3 days and feel the best ive felt in years. i
assumed at the time, it was just due to getting out of the house. i
have no trouble walking up the shitty hills of DC. hooray!! maybe the
exercise is finally working!!!
- come home from the trip and make myself a peanut butter and jelly
sandwich. i realize on the first bite that im having an allergic
reaction to the fucking strawberries in the jam. every night i would
make myself a pb+j with strawberry jam as a delicious late night treat.
and most mornings i would pour myself a bowl of the special k with the
strawberries to get all my vitamins and minerals or whatever. i have
been spending the last 6 years of my life, maybe more, in a state of
chronic anaphylactic shock. my legs hurt when i climb stairs because
they’re not getting enough oxygen. feel even more stupid.
- an embarrassing number of problems are solved by simply not eating a
fruit that’s actively trying to kill me. my legs are pain free, i can
breathe better, my nose doesnt run constantly, i no longer have a
chronic sore throat and tight chest. things are great! except since i
got back from DC i’ve got this rash on my face and nothing seems to get
rid of it. back to the doctor i go.
- my doctor asks me if i have lupus. the “house” disease that it never
is?? that can’t be right. its never lupus. i look up information about
lupus. it kind of sounds like i have lupus, actually. uh oh. in fact,
now that i’m actually looking at the places that hurt, they’re kinda
swollen.
- i get bounced around from specialist to specialist, from another
doctor to an allergist to a rheumatologist who confirms via a very
extensive blood work test that it is not lupus OR rheumatoid arthritis
(RA). i go insane at about this point and i start to understand why
“house” was so pissed off at the time. the shape of the rash is VERY
specific to lupus, making differential diagnosis near impossible.
- the dermatologist gives me a face wash that takes care of the rash
overnight. it was a yeast infection that simply decided to form itself
in the shape of the classic “malar” or “butterfly rash” universally
associated with lupus as a fun prank on me. fucking false flag!!! rash
played me like a damn fiddle!
- on a call with my psychiatrist to renew my meds, she just fucking
drops the answer in my lap after a quick look in her database after
excluding lupus and RA. the rheum was right. i don’t have RA or lupus. i
have RA lite that doesn’t show up on tests. this is the only thing i’ve
ever felt sure of in my life because of the unique presentation of
symptoms. she saved my brain from entering the unfathomable dark abyss
that is self-diagnosis.
whew! isnt that just the dumbest shit you’ve ever read. the
act of not eating a berry should not have had that much impact on my
health. but like. man. i dont talk about this stuff unless its funny
(strawberry TKO) because 1. its off-putting to everyone but people who
revel in the idea of being sick 2. i value my privacy despite sharing
all the stupid shit i do lol. i have to talk about this one because it
directly impacts my work and i have a very kind and enthusiastic
audience to whom i owe explanations for my flakiness for the past
months.
my symptoms should come in the form of “flares”; i will be
symptomatic for some time in between periods of remission but the
duration of these is completely random. i just went through probably the
worst flare ive had in recent memory and i probably have a little more
time left with it before it finally fucks off. the unique features of PA
that make me certain its the one are:
- the swelling only last a few hours at most and sometimes it’s only a few minutes.
- the swelling is not the same joint every time or consistent. it has
favorite spots, like the tips of my fingers or my shoulder but attacks
do not follow any pattern or occur after exposure or trauma.
- multiple joints can be affected at once
- my joints are normal in-between attacks.
transitory inflammation that clears itself up before the
lunch hour is over is a really weird beast when you compare it to lupus
or RA, which are persistent and damaging. its also impossible to show to
a doctor unless i happen to get “lucky” and start bloating while in the
office. so i still have one more tedious stop on this healthcare
journey: getting a doctor to agree with me, some moron, so i can get the
treatment i need. all i need to do is cross this final hurdle, because
treatment works. i know because we tried. even strong NSAIDS are enough
to keep me from feeling like my ankle is made of rotting wood or my
finger tips from throbbing for hours.
ill tell you this, now that i know it’s not normal to feel this way i can say out loud with no shame: it hurts like a son of a bitch.
thus concludes leg saga. what the fuck