Wednesday, March 12, 2014

"Shake it Like a Polariod Picture."

As a side note, I always wonder if the person who sings that song lyric even remembers what Polaroid Pictures were. I do. But perhaps I'm just old and cranky.

   This week's fun and exciting symptom of a returning flare is a serious tremor. I mean, not like "my hands are a little shaky," but rather "I look like I'm going through drug withdrawal." This is not a good way to look in a professional setting. And it's not just my hands. Yesterday my legs joined in the fun. Imagine trying to go down several flights of stairs while your legs are deciding to rock out to music that you can't hear. Fun times, my friends, fun times.

    And thus begins the trip down the rabbit's hole. Physicians know that lupus affects the nervous system. They are comfortable with easily measureable things like seizures. They're also cool with psychosis. These are well-defined lupus symptoms. But shaking like a drug addict, losing your ability to remember your own phone number, losing your ability to balance, etc. are a little harder to categorize. If there's no visible lesion in your brain, then they don't really know what to do. Last time this went down they just dosed me with valium until the symptoms were hidden. Needless to say, when I came off the valium, back came the shaky-shakies.

   Nervous system complications are hard to diagnose, hard to test for, and hard to have to live with. Physicians (and scientists like me) like hard numbers. Something that can be measured can be understood. But how do you measure the degree to which someone is shaking? Especially when it comes and goes? Frustrating for everyone involved.

  So, for now, the plan is to give me another whopping 1000mg of steroids through an IV. Woo. And send me to a neurologist. Because just because the last two didn't help, doesn't mean that we can't find another specialist to, well, not help. insurance company is freaking out because they don't think I was insured before getting to Alaska (I was; I paid through the nose for COBRE coverage), and my previous insurance company cannot get it through their thick heads that I cannot register in their secure messaging system because I am no longer one of their customers, and when I called my previous insurance company it turns out they are "closed due to inclement weather." Excuse me? You're telling this to someone in Alaska? Seriously? It was at about this point that I started swearing in English, French, Italian and Spanish. (I speak the first two languages, my roommate also speaks the last two. You can pick up a lot from a pissed off Italian).

  Upshot of all this is that I'm not getting an infusion today because the insurance company won't pre-approve it, and I still look like Lindsay Lohan in a rehab clinic. Added to the scars on my arms from all the blood tests, and the police will have a field day if they pull me over. Guess who's going to be driving the speed limit for a while?


  1. Let me guess--when your previous insurance company did finally send you "proof of creditable coverage,' they sent it to your old address. And when you telephoned them AGAIN to complain about that, they chided you for failing to go onto the website you can no long go onto and changing your address. We moved this summer also.

    1. Well, they were *supposed* to fax it twenty minutes ago, but so far...

      I hate moving.

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