tita where are you? I worry for you as everyone in your position needs an advocate. I am not familiar with where you live so I do not know resources. You deserve good pain management. If you are having increased pain with the alternating pressure mattress speak with a nurse and make sure it is set on a soft enough setting. The idea is that you move and the air moves constantly to keep pressure off those points. I have worked with chaplains at N.H.s and some are awesome and will advocate for what you need physically to make you feel better.

Your post resonated with me. It reminds me of the passion I have that we each are treated well despite our conditions. Please, if there is anything you need or anything I can do let me know. Peace.