Saturday, in the dark …

Pity party of one.

My situation is that I have either dermatomyositis, mixed connective tissue disease, or cutaneous lupus. In any of those cases, what I have is a sun and heat and humidity sensitive disease.  My skin symptoms are off the hook in those conditions and they are none too good without them. It’s just been recently that I had to take this to heart because now that I’m almost off the Prednisone the effects aren’t masked. I’ve done the adult things – I had my truck’s windows tinted; I bought a wide-brimmed hat and wear it always outside; I bought and use sunscreens; I wear long pants and tightly-woven, long-sleeved shirts anytime I go out during the daylight hours; I avoid UV light indoors when I can by avoiding fluorescent lighting; I am doing my grocery shopping at night whenever possible. Okay? I am trying. Fighting for remission is pretty much what I do these days.

I do venture outdoors midday on a couple of occasions – one to take lunch to my husband at work and one to take my Jetta girl outside for a pee and a poopy.  There is simply no schedule that will keep her comfortable and me out of the sun all day. So today.

Today is Saturday. It is a beautiful day here in Mobile, Alabama, clear blue sky, trees aglow in greens, birds birding away in song, about eighty degrees, and, all in all, a perfect day for poolside lounging.  When I took Jetta down a while ago, I saw that many of my fellow apartment dwellers are taking advantage of this time and doing just that.

It made me feel awful. I am a newly minted forty-eight year old woman but all my, ahem, wisdom didn’t help me one bit as I walked by. I felt every inch out of place, weird, excluded, dejected, and resentful. On the way back to my apartment, I took a different route to avoid the pool.

Well, there’s not a lot more to say about that. It was just my experience this morning. One of them. I am grateful for meditation practice which helps me stay with the awful feelings instead of hiding in tears and plans, any plans to run away. Now I’m back indoors, I’m still sick, the day is still beautiful, and I’m still hungry. Heading now to the kitchen to make an autoimmune-busting smoothie.

Look for me in the moonlight.

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