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Update: October 9th
I am at a critical point in my treatment and progress right now and trying to figure out the best way to address disagreements that I am encountering with my current medical team. I think the key issue with this is that I do not want to continue using morphine as a pain treatment because the way I feel when on the morphine takes me out of the decision making process. This makes other people think I have diminished capacity because I am all doped up.
We had just undergone a lot of changes because I was able to get a hospital bed in my room, but its been hard to use this bed effectively as quickly as I would like to because I believe the medication is slowing down my learning processes. This brings up concerns about getting me in and out of the bed to go to the bathroom and showers and whether Gail and Charla are going to be physically able to help me with these tasks. Yesterday, they were both upset to find that I could not lift my legs very much which is important to get me to the toilet, or at least to a sitting position on the side of the bed. Today I refused to take the morphine and was able to show them that I could use my legs and would improve with some physical therapy to help build up my leg movement and and to build up my leg strength. This is the route that I want to go, instead of just zoning out on morphine and having someone turn me over and clean me up in the bed without my having any awareness of it. This morning, Gail, Charla and I discussed all this and they are now working to help me set up a team that will get me on a program that feels more right for me at this point. I'm sure all these other folks mean well but I have to insist that I know my needs more than anyone else does.
This has been a frightening morning but I feel stronger now than I did just a little bit ago. Thank you for your support.
We had just undergone a lot of changes because I was able to get a hospital bed in my room, but its been hard to use this bed effectively as quickly as I would like to because I believe the medication is slowing down my learning processes. This brings up concerns about getting me in and out of the bed to go to the bathroom and showers and whether Gail and Charla are going to be physically able to help me with these tasks. Yesterday, they were both upset to find that I could not lift my legs very much which is important to get me to the toilet, or at least to a sitting position on the side of the bed. Today I refused to take the morphine and was able to show them that I could use my legs and would improve with some physical therapy to help build up my leg movement and and to build up my leg strength. This is the route that I want to go, instead of just zoning out on morphine and having someone turn me over and clean me up in the bed without my having any awareness of it. This morning, Gail, Charla and I discussed all this and they are now working to help me set up a team that will get me on a program that feels more right for me at this point. I'm sure all these other folks mean well but I have to insist that I know my needs more than anyone else does.
This has been a frightening morning but I feel stronger now than I did just a little bit ago. Thank you for your support.
Things are going well. It is important to get undoped and so far it is working fine. We will see what comes, but to this time each momnt seems worth the last.
In any case, I certainly think it should be YOUR decision how much pain-killer to take, based on your clarity of mind and ability to function. I you are working with Hospice? Having dealt extensively with my lcoal Hospice recently for my father in law, I found them to be tremendously attentive to our wishes. I hope your medical advisors are just as attentive to yours.
Much love.