Monday, February 1, 2010

iFAQ: What Is this Blog Even About?

Question I asked myself. I've noted that people usually have purpose to their blogs. On my sidebar are blogs that are definitely about Ehlers-Danlos Syndrome, definitely about poetry, definitely about Japanese fashion. This blog is definitely about only one I suppose it will become popular or unpopular based on how interesting 'I' manage to be.

Right now I am engaged in a losing battle with under-medicated pain secondary to Ehlers-Danlos Syndrome. It's like I'm playing tennis and I am my usual terrible self. There doesn't seem to be a ref and I just keep getting hit by balls I'm not strong or fast enough to return. That's a weak sauce analogy, forgive me. I'm counting down until I can take more Tylenol and slap some Lidoderm patches on. I expect if I ever get out of pain, the other facets to my personality will reappear and I'll hit my stride talking about a mix of things with my usual aplomb and wit.

Today while stewing in my usual mix of joint pain, incipient depression, bitterness and apoplectic rage I thought that if I accomplished nothing else in life, I'd try to make so no other human would have to endure what I endured in 2009 while searching for a diagnosis. Far from being a House-type experience where the doctor searches tirelessly for answers, my doctor discharged me after nine days of inpatient with no idea what I had, but in the words of his intern, " [my] feelings [were] causing it."

I was like, 'Oh, hell no.' I didn't say that; I only thought it. But you can be sure it was written all over my face. Then he threatened to commit me.

I'm not exaggerating. That's what happened. But in spite of everything, I feel lucky. I found out what I had, unlike my grandmother who died undiagnosed.

I say this often, but I'm happy this whole mess unfolded in my late 20s, after my sense of self and purpose had fully coalesced. I refuse to cede one inch of territory to anyone or anything, even a disease I was apparently born with.

Which is the source of some stress, since arguably I've been ceding territory steadily. The amount of time I can walk 'normally' without using my cane has shrunk, even with PT. If I do something a lot of people would consider normal: walking through an airport terminal with a backpack and one lightweight suitcase, I'll suffer terribly for it. My shoulders still haven't recovered.

Amid all this, I'm trying to figure out how to recover from medical bankruptcy, secure a paying a job with reasonable accommodations for disability, appease the student loan gods and recover some shred of my former fabulousness. While living in Cleveland.

Jesus take the wheel.

No comments: