I was diagnosed as “The Mystery Child” when I was seven. I had pains in my body without much proper scientific proof to label it much of anything, but they monitored me as having Juvenile Rheumatoid Arthritis. I spent my childhood years at a SickKids Hospital with blips of signs, but mostly just symptoms of pain. Much to my fears that mystery diagnosis sure as heck remains true today. It’s said that I could have RA, or there are theories of “lingering JRA pains” (yes, pretty well the same thing), but nothing is official & everything remains a whole lot of a mystery until something scientific proves otherwise. ("Mystery Child" for life.)
It’s been a rather odd week of events on the Rheumatology front for me. More tests are coming my way & lots more questions are on the table. I wouldn’t normally share all this (I like being vague & a mystery of my own merits) but I sure as heck can’t be the only one trying to figure out their body the same way that I struggle & I’ve come to the point where I want to share.
To recap the past 19 months somewhat quickly, both my wrists have been in pain. I’ve had X-Rays (fabulous hospital wear, eh?), Ultrasounds (why is that jelly goop always so cold!), MRI scans (a room with great bass beats), & multiple blood tests (just, yuck!). I’ve been on every Med imaginable except for Biologics (need the proof factors first) & had some pretty horrible side effects from most. Side effects from twitching chins, to spinning rooms, to me lying on the floor unable to move. I’ve had to adapt bunches to every day living & have lined up continuous Physio sessions to keep me going. I now think of crocheting as a great hand exercise & am a huge advocate for kinesiology tape (that stuff has become a great conversation starter). The issue is, no test comes back with any science to prove my pains as of yet & until what is happening on that tiny, unknown & microscopically small scale surfaces, I’ll never be anything more than an unknown mystery that is unofficially labeled as Arthritis.
My own experimenting (because this is a blog of mostly experiments after all): Since medications haven’t worked to benefit me, I’ve become med-free & feel better not having my mind & body reliant on pills for relief. The side effects disrupted me far too much. I’m also experimenting with diet since (if you really think about it), everything that you put in your body reacts in different ways. I know there’s lots of people out there with plenty of different diet ideals that think I’m kooky for this one, but I’ve started to eat vegan as an experiment of my own. It’s been a number of weeks now & I’ve been able to notice that I’ve been less dependant on weather changes (I can normally predict storms through pain) & have been more in tuned with my body to find certain foods as aggravators. I may introduce animal products to see how I react in time, but for now, I’m perfectly fine without them.
Today: After last weeks’ appointments, I’m waiting for more mysteries to be solved. My muscle mass has become what my doctor has stated “is far too weak for your age”. “Do you struggle to brush your hair, & take things from top shelves?” I had to admit I’ve given up brushing my hair (it’s long enough with a beachy look that no one notices), & that since I live alone & am a bit of a shorty, my top shelves are used more for storage than anything else. So now I’m waiting for electrode-like muscle tests & more blood results. Today I found out, I have to re-do blood work because of what I’ve interpreted to be “bad science" or how they explained it, "a hiccup from what your normal tests look like". If it isn’t, they’ll be more questions to solve than answers to resolve.
& that’s where I stand today.
PS If you’re in a similar situation, I’d LOVE to hear from you! Message through tumblr or @cory_u