So Lupus has been kicking my butt again! I've been in serious denial that my current treatment isn't working because I'm scared to start a new treatment. I've gotten a good handle on the Imuran, Plaquenil, and Prednisone treatment...I've gotten used to the effects. But now I have to stop being stubborn, and accept that changes need to be made. My only alternative is to stay on high doses of Prednisone, and that's just not good for my life at all.
My Platelete count dropped down to 80,000 from 126,000. And yesterday I began to develope big bruises on my body again, so we have a hunch that my levels have dropped even further since Tuesday when I had my blood work done. I go to Los Alamos next Tuesday for an appointment.
Yesterday I had what felt like a flare. I was in the middle of Walmart, talking to Twilight on the phone, and suddenly I couldn't walk right...and my brain went fuzzy...and the left side of my head began to throb. Places on my skin began to burn and itch. I didn't keep my lunch down. By time the evening started I was in bad shape!!! But I stayed in bed and went to sleep early...slept for 11 hours and woke up feeling functional. Today I feel like I'm just recovering from a nasty flu.
So I'm faced with having to do a bunch of other stuff that I'm dreading. I have to apply for a new State aid for medical expenses. Don't get me wrong, I'm happy that we have a new program that will supposidly include and cover me, it's just the application process I'm anxious about. I'm terrible with paperwork and keeping "proof" of stuff that they want to see. I lost my S.S. card forever ago....and have to figure out how to get a new one before I can even start this mess. The new treatment of Cellcept is $952.16 a month....some places it's as high as $1,500.00. And that's not counting the other medications I'll still be taking. So I'm going to begin by making some phone calls today, wish me luck!!
So that's it for now!! I'll post more next week!!
1 year ago