I went to the rheumatologist last Thursday for a follow-up/check-up on my new medication and pain. She ordered X-rays on my hands, knees and feet so we can get a baseline - and to see if the lupus is already causing damage.
She also decided to keep my HCQ (Hydroxychloroquine) dosage the same for now, and discussed some options for future treatment. Due to my body's rejection of the first drug we tried for kidney failure, some treatment options are denied to me.
When I mentioned my fatigue, she noted that going off the Prednisone after being on it for nearly nine months would be tough on my body, and I could expect some rough patches. I've had some very down days and some days when I felt almost normal. And some days when I thought I was fine until I tried to do something. I have to keep reminding myself that I'm still sick and stop trying to overdo it. I gotta walk before I can run.
While at the doctor's office I also had a blood draw and got a flu shot. Lots of stuff going on.
I got an echocardiogram on Monday to check how my heart is progressing. The last one I had was in an emergency room when I was barely conscious, so this one was interesting. For most of the procedure I could see the monitor and therefore was looking into my own body. The valves were so vivid - I was surprised at how clear the image was. I don't know what it found yet, but I actually enjoyed seeing it.
I got risers for my chair and for the couch, and both have helped immensely in getting up. My knees still hurt quite a bit when I get up from my chair, but nothing short of a lifting chair/cushion will stop that, I think, due to the nature of the chair. Lifting the chair two inches still helped a lot even if it still hurts. And getting up from the couch is almost painless, although I still need to brace myself and push up with my arms.
The lavender treatment has dramatically decreased the annoyance of my hot flashes. I'm down to maybe one or two a night instead of a dozen or so, and they aren't nearly as severe. I'm going to keep getting lavender shower bombs and leaving them near my computer before I use them in the shower. The scent is clearly helping.
I'm still using the exercise bike, and to my surprise I haven't missed a day since I got it. I know I eventually will have a day that I'm just too tuckered out to ride it for even five minutes, but so far that day has not come.
Inkwell and hubby-Eric continue to survive, as well. Inkwell has been getting more cuddly as the days get cooler, so I'm turning into a glorified cat bed more often. And Eric is teaching heartily and keeping in touch with his students. My waking hours are spent mostly playing DC Universe Online and writing on various projects.
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