Sunday, March 3, 2013

Tricky Immunosuppression: Body Maintenance Work

In this new year, things must change. Last year I worried nonstop and worked frenetically on my few available fronts to stem the political tide of venom and ignorance in this country. This year, I am backing away from politics. I want younger people to see the light and feel the atmosphere and take up the standard. I am going to work on myself.  The results are more satisfying.

I'm sure my usual optimistic, cheery demeanor fools many into thinking lupus is like hypertension-take your medication, eat right and exercise, and it's all under control. Last week I took my semi-annual treatment of the B-cell killer. Two days later, after a normal morning preparing breakfast and caring for dog, fatigue hit me and curtailed all my weekend plans. Today I am dealing with a skin infection that developed in a matter of hours from normal skin to a bright red, oozing, malodorous expanse that will require special care for days. I feel like a leper. Does hypertension ever make anyone feel like a leper?

Matters of the immune system are tricky. If medicine is suppressing its function, infections begin with little warning and progress quickly to far beyond what is normal in a non-compromised system. The infection I have would ordinarily be a little itchy redness, not the awful mess that I described. I wouldn't have to pull out all the stops to treat it and prevent it from spreading-my body would handle it for me with minimal help.

Sometimes I tire of being the maintenance crew for this damaged body. I stay away from people when I feel like this. I don't want to hear them talk about the difficulty of finding the right gold dress or how long it took for their plane to arrive. I don't want them to look in my eyes and see that faint suicidal longing that I will not indulge but cannot escape. Yesterday I heard someone close say "I feel like I'm in exile." She thought it was because she was not where she wanted to be, but it is because she is not who she expected to be. I get that.


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