Almost four years ago, I got a rash. It was a big round circle on my arm that wouldn’t go away at the same time, my cheeks started flushing pink and I felt really, really tired.
Me being, well, me, I jumped to the worst- that tends to happen when you have an anxiety disorder and have a family history of autoimmune disorders; particularly Lupus.
The doctor told me it was poison oak, and sent me back to my dorm with a container of steroid cream.
Two months later I started breaking out in hives across that left marks to looked like bruises across my arms and back.
It happened at home when I was around my pets
It happened at school when I wasn’t
It happened when I used different detergents
The doctors tested for food allergies and I came back allergic to ....everything.
Turns out, blood work for allergy testing isn’t as accurate as the prick test. I stopped eating the foods the showed up positive on the test and then slowly reintroduced them into my diet.
Until weeks or months later when the hives came back; this time followed by joint and muscle pain that was so severe walking up the stairs of a morning made my eyes prick with tears.
The doctor’s ran an ANA that came back negative
And.....that was it, no follow ups, no other testing, nada. I had a few rounds of steroids try to keep down the reaction my body was having but there was no explanation as to WHY it was doing this.
One doctor thought it was just anxiety and tried to put me on meds for that. They knocked me on my ass but didn’t help.
The aches kept up, and weird skin patches kept appearing, so I was referred to a dermatologist. She told me it was Psoriasis and said the pain could be caused by Psoriatic arthritis but....I was “young” so she really didn’t want to put me on a biologic. She suggested I get muscle relaxers and naproxen from my GP and gave me a nice little spray for any more skin issues
Then, in July, I pulled a muscle ....except it did’t heal, it kept twinging off and on until late November when it suddenly became so painful I was dragging it around anytime I had to stand for extended periods. Shopping trips meant me hobbling around slower than my friends grandmother; while even standing to cook meant constantly shifting weight around.
Back to another doctor, who once again does an ANA, this time everything comes back normal except this thing called the antihistone complex which was apparently borderline, and then my CK levels which are all wonky.
He seems to think this isn’t a huge deal but, since I’m still limping around, sets me up with a rheumatologist, just in case.
I spend all of fifteen minutes with a rheumatologist flicking through my medical records and telling him all that was going on before he says “I’m quite sure we are dealing with something autoimmune, most likely with the Connective tissue” His big tip off? Something that none of the other doctors seemed to concerned about because it’s been there since I was a kid.
My fingers and toes turn blue if I’m the least little bit cold. Like, not the normal way, but like if I’m cold, or keep my hand still too long I start resembling a corpse. My nail beds turn blue and my skin gets purple and mottled and sitting in a chilly doctor’s office well, let’s just say the doctor was giving me weird looks the minute we shook hands.
Turns out, it called Raynaud’s and in about half of people with it it means absolutely nothing except investing in a nice pair of gloves because you’re more prone to frostbite and gangrene. In the other half? Well, it can be an early warning sign of auto immune disorders; coming on as early as twenty years before any other symptoms. My started when I was around five or six...i just turned twenty five, funny how that works
So, then doc orders an obscene amount of test; x-rays, blood work, all kinds of fun and gives me steroids and an nice arthritis med to tae in the mean time.
Then the blood work came back and I go in for a follow up and.....everything is essential normal. The new ANA is fully negative, CK is back in the range it should be.....but the test for Lyme disease was a little...off.
Not enough to say I had Lyme, mind you, because testing for Lyme is .....strange. See first they do one test and if it’s equivical or positives they do others. So my first part was positive so they moved onto the Western Blot where, in order to be diagnosed with Lyme, you have to test positive for two this on one scale, or five? on the other.
I tested postive for one on each IGG 41 and IMG 41 which indicates some exposure to a flagella bacteria...which...covers a lot of things, including syphilis.
But, you see, there is this funny thing where people with certain autoimmune disorders will have positives for Syphilis. Turns out the same is true for Lyme test, you can have false positives because you actually have an autoimmune disease.
So, needless to say, the doctor decided he was right, and “You’ve got a connective tissue disorder, It’s not Lupus, but kinda like a ....cousin” is how he put it. Of course, then on the way out he gives me pamphlets on Lupus, because it’s treated the same way, also the undifferentiated connected tissue disorders apparently have like....1/3 or a percent chance of turning into full blown Lupus which is...charming
In the mean time, now I get another round of ‘roids,and the arthritis stuff, coupled with Hydroxychloroquine which is a fucking antimalarial that somewhere along the way people figured out helps with joint problems.
Generally, I prefer to get my quine through Gin N Tonics but, ya know, can’t have everything I suppose.
This drug has some great side effects, my favorite being bleaching of hair....guess it’ll save me money at Sally’s?
Course I also have to have my eyes checked a couple times years cause it can attack them which is....super exciting
I also get to have a CT scan done to, you know, see if any damage has already been done by this fun little illness.
I still kinda wanna go back to the first doctor and be like hey, remember when you thought I just had like poison oak and that I was being ridiculous thinking I had Lupus? .....about that.
Just saying, like I am not advocating self diagnosis but...I’d have a whole lot more money if I could have.
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