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@czsalt64

Very sorry to hear about your disease. It just amazes me how people cope with stuff. Facing our own mortality, and our less than healthy selves....I helped my mom die at home. She had stomach cancer and fought it until they could not do anything for her anymore. It was just pain management. She told me, "You don't know how I suffer." She was ready to go. I think she stayed as long as she did because I wasn't ready to let her go. Taking care of her gave me a sence of purpose. But now I am not afraid to die. Not that I want to, but when it is time to move on, I'll accept it. Just manage my pain. Anyway. Doctors are pretty emotionless creatures. Even nurses. Guess they have to be. So you are right not to turn to them for support.

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Replies to "Very sorry to hear about your disease. It just amazes me how people cope with stuff...."

Thank you so much #czsalt64 I sincerely thought the medical community was here to help. I am amazing myself that I get up every day after only a couple hours of sleep (my eyes burn all night so I have to put ointment in them at least every hour) and do deep breathing for hours because it takes so long to get the tremors out my hands and stiff legs under control. In the afternoons I seem to get better but I never know when an attack is going to happen. Like now, I was trying to install some apps for my husband and had to stop because I couldn't control what keys I hit. I also can't remember words and most doctors names so my husband has to remind me most days. Typing this is hard because I've used so many wrong words and typos I have to re-read so many types before posting but I need to because I need human support to keep fighting. Most of my doctors aren't giving it to me. On one of my ER visits a doctor noted I took dilaudid before I came in. I've never had dilaudid and wouldn't unless a doctor prescribed it and watched carefully since I have so many reactions to medications. I am so crushed by the cruel untrue, out of context things that were written in Epic that I almost can't breathe when I think about it. And now starting the fight to have it corrected so hopefully when I find a new PCP they see the truth. The "liaison" they assigned me to work with hasn't returned my calls for two weeks, including the one I left today, I leave a couple a week. I am not afraid to die either, I actually pray for it now to happen naturally, without pain. I am not suicidal, oddly enough, over this. If you got cancer, how do you know you would get anything for the pain with all the fear of opioids? I was advised by the various nurses on call for my PCP to go to the ER 4 different times when I was having these "seizure" like episodes and it was documented in Epic that I went of my own accord and was counseled that the ER was only for people who were dying. My thinking was I don't want to go against medical advice or any medical complications might not be covered by insurance. I didn't stop going to the ER because of their admonishments, I stopped going because my husband now checks on me every 15 minutes or so, even in the middle of the night and has applied for FMLA so he can take care of me at home, dr visits, physical therapy, etc. So I'm sure now I will no longer receive any pain management for my sciatica/neuropathy. because our medical community is so small.and doctors will say when I came to the ER I said I was in pain when they asked or I said I'm in a lot of pain. Not because I wanted drugs, I wanted HELP to stop what was happening with my body. Advice? Words of support, gentle criticism? Including the stalwarts @jesfactsmon @sunnyflower - thanks again for my ramblings. Oh, forgot, my lyme disease and parasites are back as well.so I am being treated for that. I feel like Job.