I’m still struggling quite a bit over here and not feeling too well. I’m still taking very high dose steroids and I’ve been doing so since April. I’m stuck with this until I can get in to see the Rheumatologist and as I’ve mentioned before, that will definitely be months while I wait to get back to the big hospital at the end of October.
My doctor had me come in though because the steroids are too high for her liking, even though they are not as high as they were initially. We know I can’t stay on them, but I’m not feeling as good as I was initially and so the benefits aren’t really outweighing the negatives so much at the moment. Regardless, my doctor is having me do a “no pressure” taper to try to get down to what she’s calling a “more reasonable” dose that will carry “lower risks.” So, I’m trying to taper down one milligram every two weeks, and if I feel the least bit crummy I can just go back up to the last dose I was “barely functioning at.” Those were her exact words. “Barely functioning.” I feel like I’m already barely functioning, (and so does Master), but you know, what are you going to do? We know about the risks and we understand her desire to get me down to a lower dose, so we’re doing what we can and hoping upon hope that the Rheumatologist will have something better for me when I eventually get in. Even so, with this whole “no pressure” taper it could take me the better part of a year or more to get down to the “reasonable” dose if everything goes perfectly, but it is what it is.
I’ve been trying to do this taper for about a month now, with not a whole lot of success. Some, yes, but not what me and Master would like. So now what? Now, we’re adding in a shitfuckle of caffeine.
Yes, all my doctors tell me not to use caffeine. It’s bad for the Dysautonomia I have. You know what though? Combine it with the steroid, and I actually seem to be doing a bit better. Master is monitoring my caffeine intake cafefully (and we’re mainly sticking with green teas) but on days that I get six to ten or so cups of tea in per day I don’t need my wheelchair so much and I can get more done around the house.
You read that right. Ten cups. That’s a lot of stimulant. What’s a girl to do when you’re trying to taper with no other recourse though?
The doctors tell us what not to do, but no one is really giving us any idea of how to get me to a level of “functioning.”
“Take enough to just barely function.”
Most days it takes me six to eight hours to be able to get off of the couch in the morning, and then I still only have about six to seven hours of “active” time before I feel exhausted and crash… On very high doses of steroids. That’s so shitty. Physically I need a lot of help, and we’re finding that this is something we can do hopefully in the short term only to help me function at some level.
I still have days where I am completely useless, and I still have days where I cannot get off of the couch at all. I still have need for my wheelchair.
Still, caffeine is giving me a lot more of the life I miss living back. Excessive? Yes. Yes, it is – especially for someone who (before this whole mess started about three years ago) rarely touched caffeine except for vacations or a midnight movie release) but until one of my doctors comes up with a better option? It’s what we have.