Hey all, had to lay down and be a vegetable a good part of today again. I have no idea what it is that comes over me but it’s pain and weakness and nausea and just an onslaught of shittiness. My arms still feel like wet noodles and they hurt, but I’m typing because it’s the only way I know to stay engaged and my fingers are behaving better in any case even if my arms feel funky.
I’ve been thinking a lot about how the only time I’ve seen people as disabled as me is when they’ve been in hospice. Since I’ve worked in home hospice and residential hospice I start imagining how nice it would be to have people like me around when I’m sick. I used to visit dying people and just hang with them. I liked to do it and though I’m not dying I keep thinking it would be nice and it seems like I should be able to get some sort of assistance.
Some of the time Daniel has to do everything for me and if he didn’t work at home I’d really be screwed.
So today I thought of home health. What does it take to qualify to get home health from Medicare?
I called the local hospice and home care center. I’ve worked with them before as a volunteer so I knew of one of the local places. They don’t know me because I was actually working for another organization that placed one of my guys when I worked in hospice in one of their homes and I continued visiting.
Anyway, I talked to a really nice lady and asked her if Medicare covered home health care. I first told her I’d like help with ADLs. (activities of daily living) Apparently those are not covered by Medicare just medicaid, so I asked what was covered by Medicare. Nursing is and physical therapy are and a few other things as well. I told her I don’t have a diagnosis. I did not go into this being drug damage. I just told her it’s something weird that my doctor can’t diagnose but that I’m getting weaker and weaker and I can’t take care of myself and I’m afraid of muscle atrophying etc. She was so nice and empathetic I started crying. She told me to see my doctor and have him diagnose me with generalized weakness and muscle atrophy and anything else he could come up with.
So soon I will maybe have someone visiting me. Even though Daniel is here I hardly spend any time with him. He brings me my food and then works up to 18 hours a day quite often.
The thought of having physical therapy is really delightful as I’m truly afraid of shriveling away.
Also a bit of new info—I’m doing a switch from Klonopin to Valium as I’ve been stuck on the same dose for several weeks and tapering even the tiniest amount has made me worse.
I’ll be doing that starting tonight. Hopefully it will be okay. Some people do not do well doing the crossover at all. Others swear it saved them. I simply don’t see an alternative now.