It's Me Again

It has been awhile since my last post. I wanted to believe that I didn't need this blog anymore. That I had gotten all of the stuff out of my head that was rattling around up there. But I realized this weekend that there is still lots of stuff up there. Some of it related to the Lupus. Some of it related to how the Lupus is changing my life. Some of it just relating to my life. So I'm back, writing away once again.

So I survived Memory Walk 09. I work for the Alzheimer's Association and am in charge of the local fundraising - awareness raising walk that happens here every fall. I think it is a little ironic that I am organizing and participating in an awareness walk for something other than Lupus. I almost feel a little guilty about it. Not that there are any Lupus walks in the area, or in the state for all I know. But I feel like I am cheating on myself and everyone else out there with Lupus because I have spent my time and energy organizing a walk for another cause. It's not like I have a plethora of energy available these days. Then again, it is part of the job description for which I get paid for. And I still need to get paid if I am going to keep my insurance and try to afford this damn disease for awhile. But I do still feel guilty. When I was up on stage during the ceremonies, with the thin wispy hair that is just starting to grow back and the fat prednisone face, and my long sleeves and pants on even though it was sunny and 80 degrees out, I felt like a liar and a cheat. I felt like everyone in the crowd was staring at me and thinking "why are you talking about Alzheimer's, you have Lupus". It was as if they were all looking right through me. It was a very weird feeling.

And I survived the event without a flare!! That means when I see the Rheum in a couple of weeks he will take me off the Prednisone. I'm down from 60mg a day to 10mg a day. He left me on the med through the event just in case things started to get a little rough. But I planned ahead, used my calendar and my lists and managed to survive in one piece. I had a great committee working with me who helped me feel like I really wasn't forgetting anything so I didn't spend my nights obsessing over the details. Actually, the event was more successful than I had expected which just blows my numbers for my 5 year plan all to hell. Oh well, I will deal with next year's numbers in January when I have to start thinking about the event again.

Guilt is such a weird thing. I feel guilty about so many things all because of the Lupus. Sometimes I feel guilty about not doing something. Sometimes I feel guilty about doing something. Sometimes I feel guilty because I don't want people to think I am using my Lupus to do or not do something. Guilt, guilt, guilt. It is even more annoying than the pain from the pleurisy.

Until next time,
Nicky