I still don’t feel like thinking about my health. But I know I need to stop just letting it be, and actually do something about it. I mean my med doses. I had just been coasting on this one dose for weeks. Previously I had a plan, knowing which days I would be taking what doses, and looking forward to decreasing. This time, I had no mental capacity to reduce again. I think part of it was being scared to decrease to 10 mg for a third time and get the horrible leg inflammation again. Which would mean a whole new set of challenges and decisions that I just long for not having to make. The other part is that I am sick of thinking about my health. (Ha! See what I did there? That happened without even on purpose.) I was at 12.5 mg for almost three weeks. I had slight swelling of the ankles in that time, for a few days here and there. But luckily no new inflammation bumps on my legs. Well, there were two that got red, but not big and sore like before. So. I did it. Last Thursday I decreased to 10 mg. Third time’s a charm?? I now have slight swelling in my ankles, but so far, no new bumps on my legs. Although it’s sometimes hard to tell what is new and what is a left over bump from before. I am hoping and praying that the swelling will not get any worse and go away within a week or so. And then my plan (yes, I am making a plan) is to decrease to 7.5 mg in about another week. I will stay at 10 mg for two weeks at least. It seems like my body needs a more gradual decrease to keep the inflammation away, so I will listen to my body.
I actually took a calendar for May, June, and July, and colour coded out my various doses. I felt a visual would help me see a pattern in how long I could, or couldn’t, be at a certain dose. I’ve determined that one week on a dose is not enough. Two might not even be enough, depending on new symptoms. So I am going to stay at 10 mg for at least two weeks (again, hoping the swelling goes away), and then assess.
I have a lung doc appointment on Friday. Hopefully my new asthma medication for this past month has helped. But I do have a bit of a chest cold now, so I am not sure if the results will be hindered by that. Then I see my rheumatologist on July 22.
What do I want? I want to be able to keep decreasing my prednisone dose, and get off these flipping meds, without having to add on any other medication. That’s what I want. Now tell me what you want, what you really, really want.