World’s Smallest Violin

I couldn’t fall asleep last night. My hands and wrists were throbbing in discomfort. I hate to even call it pain because when I think of pain I think of stabbing, sharp sensations and this isn’t really that. It is dull, constant, annoying. It makes it hard to grip anything, but it is just as uncomfortable to have my hands open or flat. There is no position they can be in that doesn’t hurt. In the quiet of the night ,where there is no distraction, is when it is the worst. I don’t have a dozen different things distracting me from the fact that I constantly drop things, I can barely open twist top anything anymore, and my fingers are becoming more and more gnarled and deformed. It is just me and my thoughts, and my frustratingly miserable disease.

I did a dumb thing this past week. I stopped all my meds cold turkey. I’m a nurse and I know how silly and even dangerous that is. I stopped my anxiety meds, my meds that keep my hair from falling out due to the chemo shots, my birth control, all my supplements, and even my chemo shot.  Even typing it, I know how bad it sounds. I was just in a bad place where I was just over every single thing about my disease. The fact that I am still young-ish and that it is only going to get worse and worse the older I get. The fact that the chemo makes me feel like crap even though it is helping slow the progression of the degeneration. And I was just DONE. I needed a few days to just stew and be pissed. I’m back on everything now, I promise. Don’t tell on me!!

I have an appointment in June with my rheumatologist and we are probably going to be switching me from the chemo shots to a biologic shot. I’m trying not to have high, unrealistic expectations for this new med. I have heard people have good results and feel better on them, but who knows if that will be the case for me? I’d rather be pleasantly surprised than super disappointed from getting my hopes up too high over this new med. It’s a journey and a process. I have resigned myself to the fact that I’m never going to feel ‘better’. I have a degenerative disabling disease and that is my lot in life. Not being dramatic, not looking for pity, just being real. All I can do is take it a day at a time and remind myself it is ok to have these weeks where I am frustrated beyond everything. As long as there are good weeks sprinkled in as well.

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