Sunday, August 08, 2004

Desperate for spiritual aid.... 

Ok, I know this is going to appear as the ramblings of a madwoman, but I'll take that chance.

As I mentioned yesterday, I'm finishing up my two-week course of prednisone to stop the latest exacerbation of Sjogren's symptoms, particularly the neurological ones. I'm at 10mg now and will take the very last pill tomorrow. This dose is too low to prevent the inflammation or the exhaustion from returning, but it is simply too dangerous to prolong this med at a higher dose unless I need it to save my life.

I experienced a remarkable sessation of symptoms for a precious few days, but now I'm on the other side coming down, meaning each day brings me closer to incapacitation. This is not an exaggeration. The only question is whether I'll be in better shape when I'm done with the prednisone than before I took it.

This morning was the worst so far. I could do nothing but lie in bed feeling as though a demon were attempting to crush me from the inside out. The heaviness in my chest when drawing breath, the slowing of thought and movement, all came flooding back at once.

It's a helpless feeling, having so much illness return so fast and being able to do absolutely nothing about it. To know I'm still an intelligent person but losing the access to ease of thought all over again. Like a cherished friend vanishing without a forwarding address.

So I cried. I'm not ashamed of this, as there was really nothing else I could do. But I also begged for my creator to heal me, something I've never done before in my life.

I realize physical healing may not be the plan for me....what I am desperate for is healing of the spiritual kind. I'm terrified that this illness that is crushing me physically will also crush my spirit. If I cannot stay strong spiritually, I face the prospect of never being able to get out of bed again.

I cried for a long time because I needed to grieve the renewed loss of physical ability. Then I got up to start the day I had planned. It was essential that I do this, to not let Sjogren's and fibromyalgia win.

So I went to the baseball game and picnic as if nothing were different. I was operating at perhaps 25 percent capacity versus the 5 percent functionality pre-prednisone, so I was able to get around to my satisfaction. In a week, I might not be able to do that.

I found my copy of "Flowers for Algernon" by Daniel Keyes. In it, when Charlie realizes his loss of cognitive function, he pleads: "please...please not let me forget how to read and write". That's about where I am right now.

Please don't let disease crush my spirit.

I have never done this before and may never do this again, but anyone who reads this, please pray for me or send out a wish for me to survive this emotionally intact. My soul aches so badly, it really does. I cannot be a useful person if I give up.

Pain level: 7
Fatigue level: 7

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