Wednesday, May 6, 2009

More ups and downs

Today started out as another dreary day; it was drizzling in the morning so Florence decided not to walk, but later the sun came out for the first time in awhile (although it's still on the cool side). When I woke up before seven I went and sat in the kitchen and polished my fingernails, surprising Florence when she woke up and found me there. Doing my nails is another of those morale builders that I try to keep up with.

I decided I wanted French toast for breakfast (made with my whole wheat raisin bread); Florence volunteered to make it when Marty did one of his "mock horror" reactions ("You want what?"). I was back in bed by that time and just sitting up and eating was making me quite tired. It was yummy--since we were almost out of maple syrup I had it with blueberry jam.

The Globe photographer called and asked if it would be convenient for him to come around noon. I said I could show him how things were arranged so I could pretty much run my life from my bed. Florence and Marty were both a little concerned that I might be too tired to have him come, and I considered calling him to change it but then decided to go ahead, as who knows how I might be feeling tomorrow.

Like the reporter, the photographer seemed quite knowledgeable on the issues and sympathetic to my position. He spent quite a bit of time here, having me describe to the camera what my life was like, the nature of my disease, what I get from hospice, and the troubles I am having with my insurance company. He also interviewed Julie, but since they did that in the living room, I don't know exactly what they talked about. By the time he left I was feeling very tired, but still not the overwhelming fatigue where I don't even want to lift my head off the pillow.

During the afternoon, the reporter, Kay Lazar, called and said that she had called my case manager at United Health Care, who had quickly passed her off to someone authorized to speak to the press, and then had spoken to a second person. She said they had told her they needed a release from me to discuss my case in detail, which I could send her by e-mail (which she would forward); so I immediately sent that off. She said one thing she had been told was that I was in a "non-typical" hospice, and wondered if I had any idea what that meant (which I don't and can't imagine what they're talking about). I'm expecting that they will find some technicality to reverse their position, since it clearly makes them look both bad and stupid.

Marty is out for the evening, and Florence is upstairs having dinner with Julie, Jim, and the kids. They're going to bring some dinner down for me (I don't have the energy to go upstairs); I asked Florence to bring down my portion when she's finished so she can sit with me while I eat. Of course, I could always have more of my potato casserole, but since Julie's making fish (which I love and don't eat that often because Marty doesn't like it much), I can always have more of the casserole tomorrow (a reader asked for the recipe, which I posted in the comments section of yesterday's entry).

Tomorrow is massage day!

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