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.

ok geeze

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:

1. 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.
2. 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.
3. 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.
4. 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!!!
5. 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.
6. 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.
7. 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.
8. 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.
9. 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!
10. 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

i haven’t updated this in a few months in order to let some data (for lack of a better term) build up. i have a lot of information, most of which i think i remember. if the point of these posts was to provide information for other people i might have already fucked up. anyway: things are mostly better! today and yesterday specifically have been horrible because i just got back from a trip that involved A LOT OF WALKING. as a result, my hips exploded.

first, back in april, i had another leg appointment! with the leg doctor guy. the ortho. yeah.

swag

after he studied my MRI and x-rays, wiggled my leg around, and then murmured “that’s so strange” multiple times under his breath, the doc gave me a very reassuring diagnosis of “i don’t know, pretty weird!”. if i were paying for this visit i think i’d be mad about how often i get the “pretty weird” diagnosis, but i recognize that it’s a polite way of saying “your life is very bad and there’s not anything medically i can do about that”. sometimes, it’s the honest truth. they’re not magicians. they can’t improve the material conditions of my life or whip up a cure/relief if it doesn’t exist.

thankfully (“thankfully”) i am poor enough to enjoy what literally every other nation on earth has access to: free medical care. and he did come up with a temporary solution for the pain. a knee brace! getting it from the doctor meant i didn’t have to do any of the (extremely daunting for someone who pathologically cannot make small decisions) work of trying to sort through a sea of different braces in a CVS aisle. it fits perfectly AND my day to day pain dropped dramatically. it was immediately evident when walking up stairs; the persistent “pulling” pain in the back of my calf was almost entirely absent instead of being razor sharp. it’s not intolerable pain without the brace, just annoying. now its not a bother at all.

a combination of the knee brace on bad days, doing p.t. when i remember to (my body now craves being stretched with the inexpensive resistance bands i purchased), and taking it easy (hehehe sorry! can’t do shit! doctor’s orders!), i’m starting to notice some nice changes to my gait. i used to walk up the stairs on my tip-toes and now my full foot hits the step. the muscles that were once too tight to do so comfortably are starting to unclench. it’s been nice to get some noticeable results. the worst possible outcome would have been everything remaining exactly the same and realizing that i was just kind of experiencing life as it was intended for me. b-bummer! time to raise that wellbutrin dose again!

my biggest complaints about my current below-the-waist situation (before i ground my hips into dust) were that my pelvic floor was/is so tight that it physically hurt and that my erector spinae muscle that covered the most lower part of my back right above the center of my ass began to feel TERRIBLY tight. it felt WEIRD in an unpleasant way. downward dog or downward facing dog (i think these are the ones) yoga poses have been relieving the ass cramp. the cramp in my nether regions is mostly a result of anxiety more than leg problems. however, the p.t. has been helping with the process of untangling the several decades worth of painful cramping i’ve let accumulate over the years.

there’s new, normal “i’m out of shape” pain in my legs now from time to time, but the pain is manageable with an over the counter pain med and goes away in about a day. it’s a specific and different type of pain from the one in my knees and, now, in my hips. i just got back from a disneyworld vacation and epcot is still designed with the idea that every human being is a long distance endurance runner. that place is horrendous to get around. there was a LOT of walking done two days ago and my joints still feel like someone is grinding glass in them. my knee was actually fine (save the one very painful hill in epcot; i see now my knee problem is triggered by going up in any capacity), which is a relief. one less thing to worry about.

however, i think i will go back to the ortho and ask about my hips lol. [wobbles pathetically like a t-rex out of the room]