Monday, December 25, 2006

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Miserable Me and Sick Jerry

Jerry is still in the Pulmonary Intensive Care and I'll be spending another week in Philly. We had an emergency with my Jerry this week (when he took all the tubes out.) The hospital called me and my son, daughter, cousin, and I went. We read him the riot act and everybody cried. He needs the support so I'll stay at my daughter's house again this week, from Tuesday on. (I keep wondering if I should go tomorrow, but my daughter will be in New York with her friends and won't be able to pick me up if I took the train.) I'm not happy to have to go back and stay there again, but I will. Her house is at least 100 years old with steep steps and no shower mat. (I'll bring one this time, or buy one.) I can't work her downstairs TV and she doesn't have a sofa or regular chair there anyway. I have to watch in bed. And she's a vegetarian, who like me, really doesn't cook. My son, like his dad, likes to cook. Lastly, she has no computer or land-line phone. But I'm very blessed that she doesn't mind my staying. My 20 mg. flare seems to be cooling down, thank God. I'm decreasing prednisone every day, expecting to get back down to four eventually. I haven't had a "big" flare in more than a year, and I never remember how to titrate, but then each time it feels different. Later: My gut hurts. Now it seems when I eat beyond a tiny amount of sweet food, my gut gets irritated. I suspect more than sweets irritate it so I'll pay closer attention. I notice every twinge and that's not normal. Aches and pains are part of life as we age, but I get antsy about pain beyond arthritis, bursitis, carpal tunnel, and lupus cheeks. The higher dose of prednisone could be attempting to shred my intestines. And I'm just this side of lupus exhaustion.
I've been thinking about a painting I want to do when I'm home again for a while. I was thinking of doing the "little people" and designs I do on paper, but this time on canvas sort of the way I used to do. I have the painting of Dukie, our family beagle of blessed memory--and he definitely was--on my bedroom wall. I want something different, more reflective of me. Poor Harry. I'm so egocentric; it's disgusting; but that's how I am right now. (And always have been.)
Maybe I'm not so egocentric. I cherish my family and friends. And my animals. I feel surrounded by comfort, when I look at the walls covered with my paintings. My daughter advised me to put up only work that made me happy and I'm still working on it. Or I will be when Jerry is healthy again.
Later: Getting ready for bed. Seem to be packed except for morning stuff. I have a regular packing list for Harry and I. It's saved a lot of frustration. It's hard to be with Harry right now. I'm cranky from both Jerry and the prednisone--being on it and titrating it at the same time. Harry comes from a self-involved family who were rigidly against change. Unless it suited them. That was okay. Right now, his mom isn't talking to him because he wouldn't come up every Monday with her weekly money. His brother is willing to put the money out on Saturdays but she doesn't like to "bother" the brother. Harry goes up to her every week and sets up her medications. He orders them, picks them up, fights with the insurance company and the doctors. He's obtained every existing program she qualifies for. Driving up to Far Northeast Philly from Newark Delaware every week, rain or shine, is not fun and Harry hates it. But he does it. Anyway, that's his family. He idolizes his dad, but his dad wasn't exactly a great prize either. Harry gets cranky and somewhat freaky when anything changes, he has to do something new or extra, or I'm not with him. He's seriously hard of hearing and has little sense of direction, so part of his need for me is self-preservation. But another part is support and lack of companionship for three days. Men. Women usually have friends to talk with, to reach out to. Men have too little. Just football.




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