After-Christmas Thoughts on Living with ALS-Lou Gehrig's Disease
 

After-Christmas Thoughts on Living with ALS-Lou Gehrig's Disease
by Fern C.
December 29, 2007 04:10 PM EST rating: 10/10

I've been through a very weird two weeks. First I was broadsided by a crisis with one of my aides. It was about something the new "fill-in" aide said that was totally twisted around and led to one aide thinking I betrayed her. She threatened to walk out and I had to have a long "talk" with the fill-in aide, which isn't easy when you have to type out everything and your hands get tired. And it is virtually impossible to talk over an angry aide who is raising her voice. It would have been a daunting task for a healthy person, but for me, it was just too overwhelming. I had a day-long crying jag, and at times I had trouble with my breathing. But it's blown over for now, and I really hope it stays that way, because that stress is something I don't need.

The bright side: some awesome gifts from friends near and far. I had Christmas dinner with the family yesterday and got more nice gifts. I gave giftcards to the kids, and I filled the tip envelopes for the aides and the building staff with what money I have managed to put aside this year from eBay sales and surveys, etc. So I need to raise money if I am ever going to have a renovation, and a shower and hair-washing again. I am trying to find all kinds of ways to make cash here and there. I'm sure this will never happen, but at least I have a goal, because G-d knows all the dreams I had last year at this time are shot to hell.

So I have my eye on a new prize: I am going to do anything to accumulate cash for new rugs, a paint job, and a renovation. I am glad the stress of Christmas is over. I am grateful to be here another year.

Last Saturday, I had a visit from the nurse at Consortium hospice. We both decided that I am not ready to sign a DNR because I can still fight an infection. Somewhere in this misery I find the strength to keep living. I still think I can make a difference, Maybe I am still delusional. I think that I have learned to accept this life a little longer while I can still write. As depressed as I get, there are still bright spots. The attorney who handled my apartment sale sent me an invoice for $840.00. For months I have been staring at it and wondering what I should do about it. Finally, I bit the bullet and sent him an email telling him that I would have to pay in $50 increments. He wrote back and told me to forget it. It's nice to see some people have a heart.

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