This isn't really the sort of place I thought I'd end up, but here I am all the same. Something like 10 or 12 years ago I whacked a shin on a steel beam at work, lost feeling in part of my foot, was treated by a neurologist and eventually regained sensation and that was that.

Well on a random Sunday night (which I only remember was 5 years ago today because it was the Sunday night before my first anniversary) I came out of the bathroom and my husband asked if my ankle hurt because it and my foot were all swollen. It was sore, but it didn't hurt. Yet. I iced it and the next morning it was fine so I shrugged it off. Except that by evening it was swollen and sore again. I didn't waste time and got to the doctor first thing in the morning. He wanted x-rays, half my blood supply and sent me home to wait for results after talking about scary things like lupus. By that Friday he decided I had a completely clean bill of health, shrugged and sent me on my way. By then, the swellling was starting earlier and earlier in the day and I could no longer wear shoes, only flip flops and the soreness had progressed to pain. Still, he couldn't find anything wrong and sent me away.

I continued seeing doctors. I all but begged for help. My leg would swell all the way up to my calf. I feared my skin would tear. I cried myself to sleep at night, silently because I didn't want to bother my husband with my pain. Eventually we stopped sharing a bed because he has RLS and if he bumped me I wouldn't sleep the rest of the night because of the screaming agony. The pain spread through my hip, and blessedly stopped there. I feared it would just keep going. And the swelling isn't quite so bad anymore but it still swells every day, sometimes more, sometimes less.

I don't even have a life anymore. I haven't worked, not really, in years. I have a "job" as a substitute teacher at a tech college and work maybe a day a month. I can't even sleep in the same bed with my husband for fear he'll touch me. My memory is shot to hell. Sometimes I even lose focus in the middle of a conversation and forget what we were talking about. My vision is all sorts of messed up, bad enough that an incompetent neurologist who can't follow diagnostic procedures diagnosed me with idiopathic intercranial hypertension about a 1 1/2 years ago. I had asked (on the advice of my doctor) that neuro about CRPS. He looked at me funny and I said RSD? When I finally started speaking words instead of acronyms he was all yeah yeah... there's no way you fit the profile for that. My new neuro is the one who pointed out you can't diagnose IIH without a lumbar puncture. She has also just referred me to a pain specialist to confirm a diagnosis of CRPS.

So, it's been 5 years. I've found myself labeled with a somatizaion disorder in my medical records. I've had a doctor, to my face, tell me all my problems are anxiety related. (He got a piece of my mind right then and there, because I suddenly had a temper control problem.) I've cried in doctor's offices as I begged them to tell me what was wrong, I didn't even care anymore how bad the news was... I just wanted an answer. And now I'm just a ball of emotions. At first I was simply thrilled. An answer, at last. It isn't a good one, but all hope for a good one was long ago lost. But the hours let it start to sink in. I'm so mad, I went to doctor after doctor and I've been repeatedly labeled as basically crazy. If they had just listened to me and taken me seriously (would they have if I were a man complaining about pain) how much suffering could I have cut off with treatment? Mostly I'm struggling with how to find hope. I tried to get help, I was in a doctor's office in under 48 hours of my first symptom. I didn't stop going either. And now it's been 5 years without treatment. If the best hope is in fast and early diagnosis and treatment, I don't like thinking about how screwed I am.

I still have to wait for this second doctor to confirm it in a month. My new (awesome) neuro thinks it is but wants to be sure and says he's better suited to treating it because he sees so many more cases than her. But there is no other explanation, everything every doctor has come up with has been completely ruled out. Other than me being completely off my rocker.