Wednesday, at my therapy session, my therapist suggested we look into Palliative Care, which is medical care provided by physicians, nurses and social workers that specializes in the relief of the pain, symptoms and stress of serious illness. My disease has gotten to the point where I feel like I could benefit from this. No one wants to think about it, but my life's been cut short. I'm going to die sooner rather than later. And I don't want to go uncomfortably. I feel like my doctors are giving up on me, telling me Oh, your MNGIE is progressing, there's nothing we can do, so here's some more therapy and maybe some pills that may or may not work for you. Okay.
I don't have anymore options other than randomly dealing with the symptoms I have. And so far, no one will listen to me about my nausea and vomiting (hopefully my GI doctor will be willing to try what I want), and those are the things that have been getting worse and worse by the day. I can no longer eat. Anything. Period. Zilch, nada, no food whatsoever. I can barely handle a peppermint anymore when I'm nauseous. My weight is continuing to drop. I can't comfortably take a bath because I have to keep my port out of the water, and my bones rubbing against the tub floor is painful. My muscles ache more and more every day. I am not happy or comfortable no matter where I am.
I wish my PCM cared enough to read this blog. Then maybe he'd fucking listen to me.
Anyway, I'm going to look more into this palliative care thing. Hopefully it could provide me with some relief somehow.
I think that's a great idea. I was also thinking about your sore muscle's I can't feel the left side of my body but the right side ache's so much that I want to cut it off. Heating pads aren't big enough to help but heated blankets help a little do you have any? I don't know if you have tried any but maybe they would help. Also there is a drug call backlephen (idk the spelling that is supposed to help as well. I use Flexeril but it doesn't help much so I'm talking to my doctor about the above mentioned after I get off all medications. If none of this is helpful just ignore me lol I hope someone finds something to at the very least make you feel comfortable. You deserve to watch your movies in peace. Loves, well wishes, and hugs sent your way, Jess
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