Saturday, July 25, 2015

  Parts is Parts

    Today I went with my mother to the hospital so she could have an ultrasound on her leg. It was humid out but very cold in the hospital. I waited in the family room while she went back and decided to check my phone, read, and what not. There was a kid’s show on the TV and they were singing about the human body, all its parts, and what they all are for. That’s when it hit me. My parts don’t all do what they are supposed to. They are rebellious. I realized that I feel less like a body and more like a collection parts.
    Don’t get me wrong, I like my body. I have (almost) all my parts. And they usually work very well together. But little by little, my disease has taken over some parts of my body that I’d rather have back. Along with my Sjogren’s, I have MCTD which stands for Mixed Connective Tissue Disease - or as I call it, Alphabet Soup. This is the pleasant blending of Lupus, RA, Myositis, and Scleroderma into one disease. Any symptom of any included disease, any combo of included diseases, or all included diseases can pop out on any given day. I struggle with all but the Scleroderma aspects. Mainly, I struggle with the myositis aspect which attacks the muscle fibers causing them to swell up.
    So today I am sitting here, at 11:00am already battling a headache. Yes, the weather is being it’s roller coaster self again here in Rochester, but I have truly lost control of my head. This is not a migraine by the way. Those are easy compared to this. This is when all of the muscles on my skull from the base in back all the way around, up, and over to my eye sockets are just painful. Achingly, stabbingly painful. I can’t lay down to rest, because if I lay on them, they hurt. I can massage them and it goes away. I can heat them and it goes away. But not for long. Meds don’t even work. I recently bought an iron skillet but I think that’s another article.
    I’m also trying to figure out what happened to my legs. OK, just one. My right leg. It decides when it actually wants to work right now. I think its out to get me, but apparently the term “sudden bouts of muscle weakness” applies here so it’s another effect of being sick. This is my myositis symptomology coming out again. Swollen muscle fibers are not strong muscle fibers. So my right leg works against me. A lot. It brings to mind a saying about wrangling cats… And with my attacks being one sided, I have balance issues as well and I fall into walls. Oh well. I’m tall so no one sees the face-prints!
    But even with headaches and legs with different agendas, the body part I miss the most are my fingers. Sjogren’s causes acute wrist pain and RA causes my hands to be next to useless at times, but my fingers now have a mind of their own. I cannot type well, not that I ever really learned. But typing on any keyboard that is sensitive when your fingers tremor is a crapshoot at best. I mistype letters and I double tap like you wouldn’t believe. Just ask my Migraine group - I have become known for my misuse or double use of emojis! And then there is reading. I am a book girl. I always will be. But a video of me trying to turn a page would be worth sending to America’s Funniest Home Videos. It can seriously take me minutes just to turn a page due to the shaking!
    So if any of you ever meet me on the street, know this: If I do not have a headache, I am a hoot to ask directions from! If I try to show you, you may get to see a wall plant. If I try to point it out, you’ll get to see my impression of an over caffeinated inchworm. Either way, It’s amusing. Just not for me when I am in the middle of trying to be serious about life.
    But then again, what’s the fun in that?

Sharilynn Battaglia

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