"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.

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. ;)

Still a 20-something

One thing every disabled person I know struggles with on some level is socialization. Let's face it: simply getting around and performing ADLs (Activities of Daily Living) is more exhaustion when you're struggling with a portion of your body not working. The more exhaustion and pain a person faces, the harder it gets to get out there and have a normal social life. 

From the get go, I've refused to let my health issues stop me from getting out there and having fun on occasion. I know this isn't possible for every person who struggles with disability, but so far, it's been possible for me. I make sure I make it to library Knitting Group days and I occasionally hit up the local spinning group for some fun spinning wheel and drop spindle chatter. But some of my favorite memories? Having a night on the town with my girl friends. 

Our usual bar of choice is a local dueling piano bar. I can't drink, but watching drunk people try to sing is flat out hysterical, especially when you add in the antics of the piano players. Last night, however, we tried something different- we went to a drag show. Now, despite the fact it was a lesbian bar, I assumed (and I know my girlfriends assumed the same) that it would men dressed as women performing. Turns out, it was women dressed as men, mostly, with only a single guy dressed as a woman. It was still fun, just very different music than I expected. All of the performers did a great job, especially the woman who danced last, despite it being her very first night on stage. My girlfriends and I sang along, slipped the performers singles (it's apparently tradition when watching a drag show to give the performers a single dollar bill when they dance by), chugged pop to wash the smoke out of our throats, and gabbed.

Jessie and I at the show. (Jessie is on the right, I'm on the left.)

I did learn something new about my body, though. I'm not normally around cigarette smoke. In fact, I'm allergic, but thanks to spring time allergy meds, I didn't react beyond the burning throat and lungs. The big surprise of it, though? Apparently, the exposure to 7 chain smokers in one tiny bar for 2+ hours will set off my CRPS and trigger a flare in pain levels. I'm hoping this is temporary and I've spent the day resting to see if it will help. Fingers crossed. 

The Sleep Saga

A big part of chronic health issues for many people is issues getting enough sleep of good quality. For me, I've never been a great sleeper. I was that kid in high school who only slept 3-6 hours per night. Thankfully, I was a book addict, so I did a lot of middle of the night reading during those years. Once the CRPS kicked in, what little sleep I was getting became of extremely poor quality. (That's standard for CRPS patients- we can't enter the deeper cycles of sleep, including REM, so we do not dream and the sleep is non-restorative.) 

So during my checkup with my Primary Care Provider (PCP) last week, I brought up some sort of sleep meds. She didn't like the first option I presented, which honestly, I wasn't a huge fan of either. I'm honestly a bit afraid of the odd side effects of some of the newer sleep aides on the market, so I wanted to avoid them for the moment. My PCP brought up an older medication, which was initially developed as an antidepressant but was found to be better at bringing on sleep than aiding with depression: Trazodone. A portion of patients on trazodone also see an improvement in neuropathic pain, so I figured I'd give it a shot. 

Tonight is night number 3 in this experiment. Nights 1 and 2 went fabulously. I went to sleep by 2 am (compared to my prior bedtime of 6 am, I'm thrilled with that) and I woke easily, to my alarm clock, feeling refreshed. After not getting good sleep for a decade, it's a bit surreal to wake up feeling refreshed. 

And now I'm off to bed to enjoy my third night of proper sleep. I can't wait. 

I have a confession

My deep, dark secret isn't really much of a secret. Truthfully, I'd describe it as a well-known fact. It's pretty obvious if you've ever heard me discuss cultural traditions. 

My "confession"? I'm Southern. I was born and raised mere minutes from the Mason-Dixon line. I'm from the suburbs of a large city, so I have zero accent 99% of the time. But so much of the cultural traditions I grew up are decidedly unique to the southern portion of the US. This means I've always known home canned jam is better than store bought, I know the true meaning of the saying "bless her heart!" (it's not nice...), and all emotions, be it happiness, worry, sadness, grief, celebration, or anger, are all dealt with the same way: with food. 

So when I was told today that my mother injured herself yesterday and her knee is now in a rigid brace while they figure out what ligaments/tendons/muscles are torn, I promptly turned my car around and headed to the grocery store. She and my father are both currently working two jobs (mom used to be a teacher and now tutors in addition to her job, and my father is an adjunct professor in addition to his regular job), so having time to cook good, healthy food is hard enough already. Add in Mom being down for the count with the knee, and I knew they'd be stuck doing a lot of eating out, which they are trying to avoid. 

I got down to business, and in a matter of a couple of hours I had a large insulated cooler bag stuffed full with food: pulled chicken barbecue with homemade sauce, coleslaw, pasta salad, fruit, and a frozen, easy cook meal for later in the week (chicken fajitas). 

This is just the normal, right thing to do in the way I was raised. It's the same way many of my friends and neighbors think. Heck, the sweet elderly lady up the street feeds me just because she can! But what I don't understand is why this ISN'T the normal way of doing things in other areas of the world. 

Think about it: when your child/spouse/parent/friend/whoever is in the hospital, do you want to cook? What about when you've just broken your leg? Or when a loved one dies? Most of the time, cooking is the last thing on peoples minds during times of stress. But it's during these times when a good, nutritious meal is most important. 

So I leave you, my readers, with a challenge. Give it a try. Next time there's a tragedy, illness, or even a cause for celebration (who has time to cook when a new baby enters the family?), feed your friends and family. Make a good, healthy meal and drop it off. I can guarantee you'll bring a smile to someones face and let the people who are important to you focus on the important events unfolding in their life.