Saturday, November 6, 2010

Flare, Blaze, Burst, Flash, Erupt

Six months to the day that I got into the hospital in May is today, which is also one day after getting out of the hospital on round two.

Yup. Just got out of the hospital yesterday with my first flare. Total bummer, but it was to be expected. I've been feeling off since mid October and it's been getting progressively worse until I checked into Emerg last Tuesday. Hallelujah for morphine. The pain that comes with this gig is really quite something. Some docs who might be desencitized to patients who experience pain are quick to write off head pain as insignificant, but man can it be debillitating. It's unreal how completely useless a person can become when there's a hurricane of various types and levels of pain swirling around (it doesn't stay in one place, it swirls, and jabs and stabs, and you just find yourself chasing it and trying to figure out which is the best way to lobb of your head and still be a good parent.)

When I first got onto the treatment I was put on 60mg of pred, considered on the high end of pred regime, well this week I did three days of - are you ready - 1000mg per day. I was high as a kite. It sure took care of the pain though, it was comical too. I don't think I've ever been that buzzed in my entire life. My mouth and my brain were not in sinc, and it was hillarious. I was an outside observer unable to do anything as my body and mouth and brain competed for attention from the all mighty steroids.

I'm now on 50mg of pred a day, so the crash is significant. I'm also concerned as I feel like we're not really attacking the disease because I'm not on the immunosurpressant because it's messing with my liver. So pred alone, and if you know me (I like to research a little... a little- ha ha) one thing I have found with Wegener's is that pred alone or chemo alone does not do it. It HAS to be a combo of the two.

I'm also concerned because on this go round my right eye is quite affected. I am worried that by not treating by protocol (i.e. undertreating) I will do permanent damage to my body. There's the eye, there's the sinuses (which are continually popping like Orville Reddenbocker in my head) and of course there's the kidneys. There's silent damage that can be going on without us knowing on the outside that could render me into an incomplete version of my former self.

With all of this there is a silver lining. I have reconnected with an awesome local doctor who was with me when I was preggers and she just came back to town. She is my go to now, and I'm so totally thrilled that she's in my corner. It's also great to have someone so close and accessible when the shit hits the fan. She was totally there for me this week, and I know that with that energy we can lick this thing into several decades of remission.

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