Having a soft diagnosis of RA (polyarthralgia at the moment) is not easy. I have been so sick with pain the last week and a half to not even be able to eat or sleep.
I was once such a doubtful person about RA. How could it really hurt that much? Surely if the person exercised more, ate better, slept better, took the right vitamins, etc etc., they would be fine, and nothing would hurt them. Surely they can just take a tylenol, an aspirin or something.
No. It is not enough. And then, being in so much pain, we need actual pain medications, not the typical NSAIDs. And we have to fight the legality of being "drug seekers". Those of us with RA would rather die than sell, trade or give away our pain medication. I cannot describe the agony of every joint being attacked by your own immune system. The broken arm I once had was nothing like it...the closest is if you drop a book on your foot. Or slam your finger in a door. Only it is everywhere. Everywhere!!
I hate sitting. I hate laying down. I am less likely to get sick-pain if I lay down. I have to sit just so as to avoid the sick-pain of scrunching some joint wrong. I have not been a person to do nothing when ill...I would at least read a book, doodle or something. Most of the time I cannot hold a book long enough to read more than a chapter. I have not seen anyone beyond my family in ages, and I have been someone to visit people if I at all could gather energy.
You must just be depressed, my reader is likely thinking. No. I know depression, and this is no depression. My thoughts are clear, and while I may cry from missing out on a family dinner for my Great Aunt who is on hospice, I am not a depression mess. In fact, it is insulting to me when people suggest it.
You must be anxious, then. No one can really hurt that much. No. I am not anxious. Not unless the pain is so bad I can barely see straight.
I desperately want to get well, because I am angry as a nurse. The lack of therapy that I have found being a patient and the treatment of people with RA is an abomination. I am on a group of over 8000 people with RA and other similar autoimmune diseases. The lack of pain control for these people is atrocious. There are posts all through the night of people whose medications have been cut, have no money for the script, who cannot get a script for pain medications. The photos of those poor souls faces scream at me, their exhausted eyes mimic mine, the dark shadows to their cheekbones are mirror copies. Photos of people whose hands look like mine sometimes do, fingers twisting 180 degrees due to the swelling, braces on every joint....begging each other for ideas to control the pain. If I get well enough I want to make changes. We are not drug seekers. We just want to live like everyone else. We are not depressed (beyond misery from pain). We are not making this up.
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