RA As My Oar

It’s been nearly 9 years since I was diagnosed.

Once the initial flare (and utter shock of having a been diagnosed with a chronic disease) passed, I began drifting. I cannot truthfully say I was “very focused” up to that point in my life. I have always just sort of paddled on with whatever came my way, but this was a hard tide to ride.

Over the last nearly nine, RA has deformed both my knees and elbows beyond repair – but Not beyond use, yet, thank everyone’s Gods. Beyond repetitive use? Yes. I have chronic swelling in my ankles that is visible, and my hands and wrists ache every moment of everyday making typing, writing, cooking, hand-holding, high-fiving, and steering my vehicle painful chores. This has happened slowly. I didn’t realize how quickly slowly could be.

At diagnosis doctors basically sat me down and scared the crap out of me without ever once describing the new way of life I should lead; i.e. eating right for my illness and the exercise I should be doing and the genius idea to change careers now before the disease crippled me too badly to do it. Who is supposed to tell us this if the doctors don’t? I was instantly prescribed medications when perhaps a dietician and cooking lessons are what would’ve healed me up. I ate ramen noodles every day for christ sake. No one asked about that. Just, “Here, take this.”

After scared came Sad. “My Life Changed Forever Without My Consent. F*ck.” and because I worked in too many bars with too many Rockstars, mine went like this:
“F*ckity F*ck F*ck F*CK! *Tears Tears Tears*” (Sorry Grandma. Should I go grab the soap?)
Along with some self loathing – “I suck! My immune system sucks! This SUUUUUUCKS!”
And definitely some (okay lots) of pity parties, “whyyyyy meeeeee???!!!”

Anyway, I’m basically passed being angry about being diagnosed and all that jazz. Angry. I just couldn’t believe that after working so hard at FullSail University, after honing my craft and pursuing something I loved and dreamed of – and succeeding, that this God everyone talks about could let this happen to ME – to ME. “What did I do? Wasn’t there some felon that this could have happened to? Honestly. I’m a good person who does nice things and exudes happiness.” (or I was… chronic pain will pull a number on one’s optimism and cheer.)

I already admitted it’s been almost 9 years. Which – quick math – tells me it took like 2 years for each “stage”. So here I am today. 100 pounds heavier than at diagnosis. On 8 different medications. Still trying to find a post-baby combo of meds that will work for me again. Exercising in the pool daily. Yes Daily – no matter how badly it hurts or how fatigued I feel. Eating as healthy as I know how to and can afford to. And mentally? I hope I am on the verge of acceptance. It happened. It’s happening. I can’t control that, but I can control how I care for it and myself, right? Right!

So. I didn’t realize how quickly slowly could be. I really didn’t. Here I am, almost 9 years later, and disease wise I’ve come along way, but career wise? I have drifted. I graduated from FullSail University wanting to design sound effects for video games, etc. Then I moved to WI because of my need for medical care and family to support me during flares immediately after diagnosis which was immediately after graduation. Not exactly the Music Mecca or SFX Capital of the nation. Let’s face it – I moved to Central WI… it’s the mecca of cows and cheese. And now 9 years have passed. Have drifted. I’ve done some cool stuff job wise, but I still haven’t finished paddling with RA as my Oar.

How has RA changed your career path?