Well, there is a happy epilogue to the home care story. After the latest debacle, I never got back to the home care agency. Prior to that incident I’d had another bad experience. I had no interest in engaging with them after all this as I didn’t feel like being honest and telling them they all sucked because I would be considered a difficult patient and having worked in social service systems I figured I’d just have my husband say I had decided that physical therapy wasn’t right for me. I did have a vague desire to stay on the rolls because they have a pool and at some point I would at least in theory like to use it so I procrastinated and didn’t answer calls for a while trying to figure out what to do.
My husband answered a call one morning and it was yet another physical therapist. He told her that I felt that the physical therapy was not appropriate after all. She said she’d been called especially since it seemed that perhaps my issues were right up her alley. She talked to my husband and said after looking carefully at my file it seemed I was much more disabled then the two other PT’s had realized and that she worked with specific sorts of atrophy and would like to meet me.
I called her later that day when I woke up and she sounded really good.
When she showed up she interviewed me carefully about all my daily activities and asked detailed questions about how my body felt. She then laid me down on my bed and started moving me about. She told me symptoms and the way my body felt was very much like someone with severe MS. Yes, multiple sclerosis. She said she didn’t care what caused my problem but I had to be treated like a baby who needed to learn how to use all their muscles again. She propped me up on pillows in a systematic fashion on my bed and had me do “exercises” that most people would scoff at. I cried with relief. She understood how sick I was. She understood I can hardly do anything at all and I really desperately need help so that I don’t become a vegetable. She GOT IT and it made me cry like a baby, because frankly, I get really, really scared sometime that if I atrophy away I won’t be able to come back.
She said that is in fact a real thing to be worried about and she was kind and held my hand as I cried. I said, “why didn’t the other PT’s believe me?” Her only answer was that they didn’t have as much experience. They were, indeed, younger than her and she has been practicing PT for 29 years.
I will not lose even more of my physical well being. We agreed that for now the most that we might hope for is simply not getting worse. Real recovery may not start until after the drug withdrawal is complete. Regaining strength may take a very long time, but I don’t have to continue losing what little I have left.
And, oh, she has also scheduled appointments with me so there will be no more last minute phone calls with the announcement, “I’m coming over in an hour.”
There is a god is all I can say. And the universe responded to my need.
I have so much to be grateful for even in the midst of all this illness. I have so many incredible people in my life and wonderful things are happening to me all the time as a result of this blog. Again as I said in another post, life does throw it’s wrenches at me but even in this horrible time so much good comes to me everyday. It’s really amazing.