My thinking is definitely changing, and in a positive way. It’s so odd to have these changes in cognition that are discernible, at least to me. Lately, I’m having ideas and I feel sharper and more alert. I’m also learning to feel when I might be able to read fiction and what it feels like when it’s not worth trying. That’s a peculiar experience, but it seems real enough. At the same time, my energy is down, both Michael and I agree, as the steroid tapering continues. If lower energy is the price of clearer thinking, that’s a tradeoff well worth it. That aspect might or might not last; only time will tell.
We had the consultation Thursday with Dr.Thoughtful and my brother’s endocrine specialist pal. While there wasn’t any earth-shattering breakthrough, it did confirm that our current experiment is likely the best one for now. Endocrine Guy suggested that after we’ve completed our current tapering regime, because cortisol is diurnal in natural settings, we should measure morning and afternoon cortisol levels to detect whether my own machinery might be starting up again, or at least functioning faintly. If it is, there should be a variance. While there’s no clear guidance out there from the research, he encouraged us to stay with the tapering and not go cold turkey. He says that coming down from the original steroid doses before and after surgery, even the low levels I’m now taking can make a huge difference in daily functioning, as the body is slow to adapt to life without artificial steroids. He also talked about the fact that his patients who’ve been andrenalectomized never feel right again, even when they’re on a twice-daily meds regime, so here’s hoping we manage to jump-start my system eventually.
Over the last week or so, as I’ve been feeling more “right” in my thinking, most of the people I’ve met with have commented that I look better than I have in recent times. I’ve been told that my color looks better, that I seem more vibrant and that my “sparkle” is back. Even Endocrine Guy, with whom we last spoke on the phone some months ago, noted that I seemed funnier and had a more apparent sense of humor than in our earlier interaction. He characterized my evolution as representing astounding changes in brain function, and seemed optimistic that there’s still reason to hope for more changes and a continuing recovery. That was nice to hear.
All things considered, things seem to be changing, and for the better. Dr. Thoughtful mused about the difficulties of assessing our progress, when we’re treating subjective symptoms such as my levels of fatigu, and how clear or muddy my thinking feels, etc. Endocrine Guy was sympathetic and reassuring: that’s the name of the game right now. At least we seem to be in the right ballpark.
The sun is shining and the most recent blood tests show that my vitamin D levels are borderline, so off I go to sit in the sun for a bit. Happy weekend to all. I haven’t heard lately from some of you who correspond most regularly--is all ok out there?