Seven years later, I'm stuck in a holding pattern, which is why I haven't been updating as frequently.
So I'm currently done with plan A of the special treatments. At the end of the month, I'm going in for a biopsy, echocardiogram, ecg, bloodwork, and a partridge in a pear tree. Shortly thereafter, I get my results, which will either be good or bad.
If they are bad, then we go to plan B, which is like plan A, but with more aggressive drugs with more fun side effects. If that doesn't work, we go to plan C, which is like Plan B, but even more so. If that doesn't work, the doctors get creative.
Needless to say, I'm hoping plan A works.
That said, if the results are good, it does not mean I'm out of the woods. It means that while my immune system will continue to be extra-compromised, in about five months, it will start coming back, and continue coming back for the six months after that, so I will need to be hyper vigilant. Again, there's a good way and a bad way for things to go.
The bad way means going to plan B, plan C, etc.
The good way means that I get to keep going on my current regimen of immunosupression, without any other changes. At that point, I am "back to normal", for whatever that means for me. It definitely means that I need to not strain myself as much as I have over the last year. I have been told in no uncertain terms that I need to relax more, or I will end up giving myself other problems. On the other hand, I've been reminded again that every moment I have is a bonus, and as such, I want to make every one count. That said, I'm going to be going ahead with my various projects, but probably modifying how I do them, and doing a lot more of that crazy thing called delegation.
In the meantime, I still get tired very easily, which means that I can't do as many things as I'd like, and I'm not online as much as I seem. I tend to leave my computer logged int to various accounts so I can use it as an "answering machine", but remember that I'm spending fewer hours on here, and it takes me a bit longer to respond to things. Please don't take it as a lack of love, it's just me trying to respect my own limitations a bit more than I have been doing.
That said,I'm hoping my next post, which will be coming fairly soon, will be full of exciting announcements about projects, events, and other fun things, rather than more health stuff.
With thanks and love,