Wednesday, August 20, 2014

"I like her sticks!"

A consistent issue all disabled people deal with is judgmental strangers. Sometimes the snap judgments are good, some are bad, and some are downright horrific and make you want to bang your head against a wall.

One of the weirdest things I get from strangers is, “What’s wrong with you!” Note the lack of a question mark- this is often not a question, but rather a demand that I inform people of my life history. Why they feel the need to know quite so emphatically, I do not know, but that’s humanity for you. There’s always a few odd balls. Depending on my mood, I’ll sometimes give a short answer that’s true but way oversimplified, a curt stare, or, if I’m really feeling cantankerous, “I was bit by a shark- what’s you’re excuse?”

The best comments I've ever gotten, though, have both been from kids. One was a little girl, about 4 years old, who asked me why I “used sticks like Grammies.” I told her my leg didn't work very well, but I made sure I got the cool sticks- purple ones with springs in them. The little girl then solemnly checked out my crutches, walked back to her mother, and informed her, “I like her Tigger legs! They're cool.” I now inform kids that my crutches are my super-secret Tigger legs.

My awesome Tigger Legs, complete with purple and white decals

The second comment was made last weekend by an adorable tot while I was at a local mall. I didn't even catch the kiddo checking out my crutches, my mom did, and she brought it to my attention. (Little kids are adorable as they try to solve this bizarre riddle the world has presented them with.) This particular little girl was about 5 years old and was dressed up in her Sunday best. After watching me walk with awe for a moment, she hurried to catch back up to her mother where she blurts out, “I like her sticks!!”

Now if we could get the whole world on that same wave length, life would be awesome.

Tuesday, August 5, 2014

Not Dead Yet!

I know I’ve been gone for a while now, and I'd like to apologize for that. Things got quite crazy around here, but in a good way, and it was leaving me too tired to contemplate writing when I got home.

So, for funsies, I’ve decided my first post back needs to be about happy stuff.

1)      I GOT A JOB!!!!!! A good job. A job I *like*. Very important, that little L-word. I'm now a designer, marketing assistant, and office manager for a small engineering firm. I'm making more money than at my last job, which is great because it means I'll now be able to afford the majority of my day-to-day medical bills on my own. A lot of joy goes with feeling less dependent on others.

2)      I've stopped gaining weight! I've only lost about 2 lbs of the 20 lbs I put over the winter, while recovering from 2 surgeries only weeks apart. But I'm just glad to have stopped the gaining and be headed in the right direction.

3)      Had my annual neurology checkup with the guy who specializes in Movement Disorders. For years, I tremored so hard I couldn't hardly write my own name. I had massive myoclonic jerks, and lots of them. But for the second year in a row, I'm considered Stable and doing Very Well. I had actually gone a few months with zero tremoring/jerks and have had a tiny uptick lately, but we're assuming that's due to stress on my nervous system from other things being weird, and it's minor enough as to not cause any issues with day to day living. 

Biggest and Bestest (that is too a word!) of them all? I had my annual orthopedic checkup. Because I'd been having some bone pain, we went into it with a worry of possible fracture in the femoral neck. I've broken that hip 3 times before, as I'm one of the "lucky" fibrous dysplasia patients who experiences frequent fractures. I had been in touch with my doc, so before my appointment we had already gone ahead and done xrays and a full body bone scan. First off, the bone scan confirmed that my Fibrous Dysplasia is indeed Monostotic and not Polyostotic. Believe it or not, no one had ever bothered to check that. Second good thing, no fractures. But absolute best of all? The scan showed that my cyst is 100% stagnant (a Very Good Thing- this means it's not actively growing) and there's zero sign of Avascular Necrosis!!!! I can actually go 2 entire years before I need x-rays again!!!! 

I'm now far enough into work that I can manage to take care of myself when I get home, which means posting should become more frequent again. I do want to take a moment, though, to thank the various readers I've been in touch with since my last post 2 months ago. You guys have helped me remember why I take the time and energy to do this after a long day of work, and I'm excited to get back to over sharing again. ;)