A month or so ago, I went to bed with a dull ache in my shoulders, which I assumed was from carrying groceries and other purchases after a shopping trip. When I woke up the next morning, it was clear that I was flaring. I could only extend my elbows half-way – and resigned myself to walking around like Frankenstein’s monster all day long – had a low-grade fever, and felt nauseous.
Lupus and rheumatoid arthritis (RA) are severe examples of coyote ugly. I never know what I’m going to wake up to. And I find that particularly distressing.
For those who don’t know, coyote ugly is an “urban” term that suggests that after a drunken night, you wake up next to someone in your bed who is so ugly that you’d rather chew off your arm to escape than wake the person.
And that’s kind of how I feel. Even though illness is not a person, I feel as though I’m at the mercy of something I don’t have total control over. And I guess a big part of illness acceptance is the lack of control aspect.
Lately, especially, I really feel like I don’t have very much control. I wonder: Do we control the medication or does the medication control us? Or is it a combination of the two?
We were at family dinner for the holidays, and my elbows were in such pain and of little use, I asked my sister, who was sitting next to me, if she could cut my food for me. Seriously. It was a new low for me. Being that I was off Cellcept and Methotrexate was not working yet, I guess I shouldn’t have been surprised that I couldn’t function up to what I feel is, or should be, my potential. But my “highest level of functioning” keeps changing, and it’s pretty hard for me to deal with.
Cellcept clearly did not work for me, and it may have even caused more harm than good. And Methotrexate seems to be a mixed bag so far. The day I take it, I get dizzy and nauseous. And lately, I’m exhausted a lot of the time. The thing is, the dizziness and nausea aren’t so terrible, but they’re just enough to make me wonder why I’m doing this to myself. And my rheumatologist mentioned increasing my dose, but I’m not eager to remind him of that fact.
Honestly, I think I was doing better when lupus was the bigger issue. As much as I thought that lupus was a problem, and it was (and still is to some extent), the symptoms were more consistent than my RA symptoms are. With lupus mainly came dizziness, nausea, headaches, and muscle aches, mainly in my thighs and upper arms. But I can go to bed fine, and wake up with swelling and stiffness in my knees, elbows, hips, wrists, fingers and hands, and shoulders, to the point where those appendages become pretty much useless. Clearly RA has the upper hand right now.
It’s not so much that I worry about waking up and looking at myself in the mirror, and seeing a stranger. I think I’m past that phase now. It’s more that I’m worried about what new symptom I’ll wake up to, or what part of me will have decreased functioning. I guess if we all lived life this way, we’d have no reason to get up in the morning. But I guess I’m still at a point where I don’t know I’ve pushed too hard until I find myself in so much pain that I can’t move.
I try to be optimistic that Methotrexate is going to make a real difference, that my arthritis won’t get worse before my very eyes. But right now, I’m not really sure what to think.
I guess if I had a choice, I’d rather wake up next to some ugly guy that I don’t remember meeting – not that, that has ever happened to me before – because it’s really bad when the party you don’t want to wake up next to is yourself…