Sunday, June 28, 2009

Frozen face is stealing my smile

No.............! But pictures do not lie! In these pictures I was smiling with all the strength I had, and I could feel the resistance beyond my mouth. My checks put up a stumbling block, like a concrete wall, like my cheek muscles were trying to be forced beyond their will, and were pushing back. They would not move. It's at the white shiny part where I could feel it, but no amount of trying on my part could break that barrier. I'm so glad Debbie thought it was good, and even bought a frame for this one. Makes a mama feel good.

(Click on the pictures for a larger view)

I was more tired whenever we took this picture, and had even less control of my facial muscles, though I was giving it all my might.

So, what's going on? Why the decline? Shall we say missed IVIGs? April, May, June, and now coming up July? I am digressing, losing so much ground I have made over the past two years. The sadder part is that it was helping other autoimmune diseases as well. Looking at the larger views, you might can see the ruddiness, the broken complexion of my face, and the heightening`1 of my *butterfly* appearance of my lupus which has been under such good control that I frequently forget I even have it. But not now.

Mestinon, 60 mg 3 x a day is what I started out on three years ago. At that time I was also on 60 mg Prednisone, and today I am on 40 mg. Today I am on 100 mg Imuran which I was not taking then. In my opinion, I am back to square one, before starting the IVIGs, and thus am no where near finding the drug combination that will put me on to the road to a drug induced remission, of at least **some** improvement.

So, where is this going to take me if I do not speak up now? The only thing I know to do is talk to Dr. Diamond and let him be my advocate. I do not feel like I have one at this point. It is harder to swallow, and I am choking more easily. I plan to have Christa, my nurse, call Dr. Diamond tomorrow, plus I am going to print out the facts of the medications and worsening symptons. Just a little bit more, and I'm not going to be able to see much at all. Well, it is about to that pont right now, actually. Jim had to help me drive my chair while we were out Friday because I could not open my eyes wide enough to see, and was outside, but even in the store I could not see byond a few feet surrounding me, and that was out of focus (I'd sure like to go back when I could go more slowly and take my time to be able to look..... Melissa, are you there....big grin ;). There is always shopping online.

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