Monday, July 29, 2013

Let's try this again...

Since the blog thing is new, I’m assuming some of the readers know me and some don’t. For those of you who don’t know me, the entire knitty-gritty story of the medical hell I live through is in the “About Me” section. Here’s the not-so-glorious overcap: I have quite a few health issues, which combined have left me permanently disabled. The biggest obstacles I face are a triple-whammy of a rare genetic skeletal disease, Monostotic Fibrous Dysplasia, a rare pain disease named RSD/CRPS, and an autoimmune mess that currently has no name. The MFD means that a portion of my right femur (the femoral neck, to be precise) likes to dissolve. The bone cells in that region simply cannot make the nice, hard bone we all rely on to support our weight. I’ve had 5 major hip surgeries since 2004 to attempt to correct the resulting issues and I’ve broken my hip 3 times in that same time frame. Hardware’s been in and out, I’ve had bone grafts using donor bone from cadavers 3 times, and the bone just keeps getting weaker. MFD can stay active for 1 year or for decades- it changes with every single case, and the disease is rare enough (1 in 15,000) that very little is truly known about its progression. My MFD cyst is stable for the time being- the combination of the last surgery (I had an internal Hip Replacement done, aka a Giant Rod of d00m) and then breaking my hip twice right after it seems to have allowed the cyst to stabilize. We don’t know if this will be a permanent stabilization or just a nice break from constant surgery, so for now we do x-rays every 6 months and wait.

The second surgery I had, waaaay back in ’04, triggered a rare pain disease called RSD/CRPS. RSD is the old name, CRPS the new one. If you want more info, there’s a lot of bad info out there about it- I recommend the site RSDHope.org for quality, up-to-date, accurate information. Basically, the Sympathetic Nervous System (SNS) overreacts due to an improper autoimmune response at the time of an injury. The injury can be something as simple as a stubbed toe to something as major as shattering your femur. The SNS then spends the rest of your life in a continuous state of FREAK THE HELL OUT. Ever slam your hand in a car door? That moment of all consuming, blinding, throbbing pain where you can’t think beyond your hand? Yeah, that. That’s what the SNS gets trapped in. RSD causes extreme pain, extreme allydonia (when the body thinks everything is a painful stimuli, including a light breeze, touch, feeling of cloth, etc), thinning of the skin, muscle atrophy, swelling, skin discoloration (zombie limb, anyone?), and odd growth of the hair and nails. RSD is a localized disease in that it can affect a very small area of the body or it can affect the entire body. My case started in an area the size of a football over the outside of my right leg, but as RSD can, and often does, spread, I now have a mild case from my hip to my toes on the left (good) side and a severe case from my waist to my toes on my right side.

The autoimmune stuff is actually tied very closely to the RSD. We’re not sure which came first, the chicken or the egg, but patients with autoimmune issues seem to be at higher risk than the general population for developing RSD, and RSD patients are at very high risk for developing AI issues. My issues are fairly major, but as of yet have no name. My Rheumy has taken to labeling it Sero-Negative RA, but it still closely mimics Lupus and my blood results are consistently inconclusive. For me, the mess includes difficulty swallowing solid food, exhaustion and muscle weakness, severe inflammatory arthritis in every joint in my body (no real joint destruction yet in most joints, but massive quantities of fluid buildup which  have actually pushed a bone out of socket before). The fluid buildup also causes nerve impingement which means extra pain and numbness.

Due to all the weirdness, I now walk with forearm crutches most of the time and use a wheelchair the rest of the time (mostly for big trips, shopping solo, and when my RSD or arthritis flare too bad for the crutches).  I live and die by arthritis gels, compression gloves, compression socks (to relieve swelling and stimulate blood flow thanks to the RSD), fancy crutches (with shock absorbers!!), and waaaay to many hobbies.

I cope with all the medical madness by crafting, primarily yarn crafts and jewelry making. I picked back up crochet after my second surgery as the RSD was setting in. It started as a way to carry a blanket with me to my lecture classes in college without getting all the weird looks (A/C is Painful, with a capital “P”), then I got, well, hooked. ;) Soon after, I learned to knit. Then, I went away to the Northeast for a Co-op (internship) and fell in with a knitting group up there as a way to beat the boredom of knowing no one. That knitting group was a fabulous group of women who encouraged me to try new things, including learning to spin my own yarn. There’s so much about the crafting stuff I love to share that have no fears, you’ll be hearing about it plenty. You might want to run now. You could certainly outrun me.

1 comment:

  1. <3 We miss you, babe. Glad to see you're still kicking.

    ReplyDelete