Welcome to Redefining Myself!

My inward journey to living a mindful and quality life

while living with NP-SLE, RRMS and CIDP

and their overlapping accessories.

Slapping the face of many things demyelinating.

Thursday, August 19, 2010

CNS Battle

August 19, 2010 Last week the leg weakness and numbness began to wax. By the weekend I was parked on the couch. Usually, I do the wait watch and see thing for a few days. To see if things get worse and begin interfering with my ability to ambulate. Well, I had fallen several times over the weekend and couldn't move about very well as the weekend ensued. I knew by Sunday night I needed medical intervention and that I couldn't ride it out on my own.
Today, I'm on day four of 1 gram of solumedrol. Tomorrow I will receive 500 mgs of the solumedrol to let my adrenals kick back in. Well, as it would all pan out I'm very glad that I got the steroids when I did. I am being infused as I type. Got this rocking BlackBerry and am trying out all its bells and whistles! A gift from the Big Kahuna, Papa Moose, my Daddy! I'm pretty slow and my coordination seated and standing is still goofy.
My evil headaches are with me and I've been running those evil systemic fevers at night. Of course the steroids will cool all the crap down and I will feel better each day over the next few weeks. I have not started the Cellcept. My rheumatologist and I both left messages for Dr. Cree this week and I'm waiting for my two specialists to talk, set the target dose for the Cellcept and get things rolling for me.
I need relief from this CNS battle. Each flare leaves residuals and the time to recover increases. I am not expecting any miracles but at least some decrease in flares. I'm entertaining a vacation from this! It has been a year now of the unfolding and evolving CNS battle. I'm fighting the good fight, I have my moments of weariness and frustration, but I refuse to cave in to all of this crap! I'm looking at the infusion box and I have 40 mls left to todays infusion. I will not quit! Keep the Light Going ~