Thursday, January 12, 2012


I didn't blog yesterday because I got bit by a stomach flu bug and went to bed very early after an entire day of barely being awake.

Tonight I am very sleepy, it's 11pm and I need to be up by 7am, but I feel this need to blog *something* because I am trying for a blog a day.

So, here's what I've got...

June 2004. This is when I experienced my first episode of walking issues. For two weeks my legs were unexplainably weak, and then I was fine. I bought the stress-cause explanation. This explanation is always followed by a "so-get-over-it" attitude and the advice given by the doctor is generally "reduce stress" and is never followed with directions for how to accomplish this, as if it were the simplest concept ever.

Since that summer the episodes have grown in intensity, frequency and duration. Some symptoms change, some don't, some evolve. Somehow the doctors have narrowed things down to a neurological condition possibly involving autoimmunity and/or inflammation. Since 2004, neurology has matured and information has changed rapidly. I occasionally entertain the idea of going back to school to study neurology, because clearly this science needs more people involved, but I have already done enough student loan damage to my life. (Trust me, the math classes involved don't scare me.)

I suffered a flare up last spring that sent me to the hospital in May. As this flare up started to subside, around October, a new one hit. Imagine a town hit by a hurricane, not leveled but damaged, starting to rebuild, almost done, when it is hit yet again. I'm in this second hurricane now. Because I have been dealing with this issue for so long, getting a new neurologist here in Oakland is taking a long time.

It's now 2012, just in case you forgot, so that's 7.5 years, if you didn't do the math, that I've been waiting for a diagnosis. My mystery problem has changed how I live my life in many ways. Reducing stress is now a requirement, as stress tends to cause flare ups. But it still isn't an easy task as I usually realize too late that I've jumped into another puddle of the stuff. Some day neurology will mature to the point of solving my mystery.

In the mean time, I keep reading up on the latest news in neurology, some of which I get from this blog: Wheelchair Kamikaze. Sometimes, though, I just read his blog because I like how he writes.

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