Again? Really?

February 21, 2012 at 3:30 pm (Uncategorized)

Not this again. Not another neurosarcoidosis flare-up.

I would do just about anything to stop the vertigo, blind spells, and crushing head pain that have been laying me low for the past few days. Unfortunately, you can’t bargain away a disease.

Here’s what’s happening – injuring my ankle seems to have let the sarcoidosis out of its cage. My doctors have assured me this is “normal.” A traumatic injury can upset the delicate balance we’d achieved to control the disease. I wasn’t well before I slipped on the ice and ruptured my ankle ligaments a few weeks ago, but I’d been managing the disease with high doses of prednisone and monthly infusions of chemotherapy and other immunosuppressants. Not any more.

I guess it makes some sense. Sarcoidosis is an inflammatory auto-immune disease. My body’s own inflammatory immune responses have gone terribly awry. I picture my beleaguered immune system like a car without brakes, careering down a steep mountain slope. Once something like a busted ankle kicks starts that inflammatory process, it can’t stop. What started with a badly swollen ankle now involves my brain. Good old cranial nerve #8—the vestibulocochlear nerve—has joined the inflammation party. When it’s out of whack, so is my balance. The blind spells are caused by inflammation on my optic nerve.

I spent the past long weekend in bed with terrible vertigo and flickering vision. Even when I closed my eyes, I could feel the world spinning and whirling around me. It’s a little better today, but it still looks like these words are dancing as I type them. The vertigo makes me nauseous and gives me a raging headache.

There is nothing to do but wait it out. I’m already on the only treatments for this disease that they have. I might not be posting here as often as I’d like—or getting back to your comments as quickly as I want. My hope is that a lot of rest will help things calm down. So that’s what I’ve got to get back to now.

8 Comments

  1. Patricia said,

    Ugh. I sometimes wish we could all time share–whoever is feeling ok today gets stuff done for those who are in an acute phase. But there is just too much stuff. So until we figure that one out, rest (like you have any choice right now) assured that you are loved.

    I think of you often, Warrior-Princess-Way-Cooler-Than-Any-Minifigure, both when I am struggling with my own small disease and when I am struggling to write. (Also when I am wishing we could get our kids together for a play date.) Don’t worry about replying…just know that prayers continue from this corner.

  2. Marianne Hansen Rencher said,

    I can’t even imagine it. My remedy for everything is a pedicure and lunch with bday cake. Just tell me when…

  3. Leanne Shirtliffe said,

    How horrible. I was thinking about you this weekend, actually. Thank you for taking the time and energy to update us. We’re thinking about you!

  4. Paul said,

    Hang in there WPWCTAM (Warrior-Princess-Way-Cooler-Than-Any-Minifigure seems too long -Thanks Patricia for a really cool name)

    Rest and take it easy

    • nan said,

      OK – there is not a place for a “Like” here – Paul – awesome name. nan

  5. Barbara Barnes said,

    Sometimes, “Shit” is the best word ever. And may I say as a side note, if you read these words and they are dancing… I do not dance in public so don’t show them to anyone please. Rebecca, brave does not come close, tenacity is too weak, intentional is kinda silly and so, words don’t work. But, letters strung together as words, is all I have. Thank you for taking time, I love you and I am sending prayers…

  6. Amy Pridemore said,

    Thinking of you!

  7. Leanne Shirtliffe said,

    Just a short note to say I’m thinking about you. (Hugs)

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