Simply because I find it easier to post here for anyone who is interested than to repeat myself for people who ask. Anyone understandably not interested, maybe go read this old post about building our garage. Or, if you want something more deathy there's this. (Or something random, or something violin-y.)
I'm doing well! The new doctor put me on steroids back at the beginning of December, and that's doing the trick. Apparently steroids either work for people with Granulomatous Mastitis immediately or they don't help much at all. I am in the lucky category of people for whom they seem work.
It's odd having something so rare, because not much is known about my condition, and the people treating me admit their guess is as good as mine half the time. I started off on 50mg a day of Prednesone (the steroid), and after two weeks there was enough improvement they knocked it down to 40mg, then to 20mg. As of this week they decided I should try cutting the pills in half and see if I'm okay on only 10mg a day. But we don't really know yet if that's a good plan or not. The goal is to see how little of the steroid I can take and still see improvement. If things start to get worse I will up the dosage again.
Granulomatous Mastitis apparently goes in waves where people tend to get better then worse repeatedly, and eventually it resolves itself after about a year. In the meantime we will manage it with steroids until it goes away. (For people who don't get relief from steroids there are other drugs more akin to chemo that supposedly help, but I'm glad I don't have to go that route. In really bad cases they resort to surgery.) I think I'm one of only about four patients at this hospital with this condition, and possibly the only one for whom steroids are helping.
At this point there is still a mass in my breast, but it's much smaller and less defined. It's big enough that if anyone else were to wake up with something like it they would panic and go straight to the doctor, but I'm coming from the other direction where the swelling has gone down so far this feels like nothing to me. If the doctor told me I had to live with the lump the way it is forever I'd be fine with it. It would just be my pet lump. The most important thing is it isn't going to kill me. Also that there is no pain.
The downside to all of this is that taking steroids is not fun. I'm frustrated with the amount of acne I'm suddenly plagued with. I've always had a fairly clear complexion with maybe one or two breakout spots to deal with at a time, but now it's almost like a rash up both sides of my face. Plus random zits all over in front. I don't wear makeup except to occasionally cover a spot here or there, but now there are so many spots it seems like too much work to bother so I'm just spotty.
The biggest problem is my weight. After all that hard work and discipline to get my weight under control I'm now pretty much back where I started. It's disheartening. The cravings at the higher steroid dosage were unreal, and not worth fighting over the holidays while eating with company anyway. I'm making better choices now, but it's one more added frustration to not just want certain foods but to have a gnawing, angry sensation about being denied them along with that.
I'm back to swimming, which is good, but that has no noticeable impact on my weight. 2015 was a rough year for swimming. The Y closed at the end of January, so I started swimming at the county pool. Then that closed for almost five months for renovation and I ended up at a middle school pool just for the part of the summer I was in town. Then nothing was really available again until the county pool reopened, but my breast issue kept me out of the water until after the new year. I feel like I'm only just now getting back to where my stamina in the pool used to be. Swimming is great exercise, but I hate being dependent on a fixed facility in order to do it.
Anyway, regardless of what I do, my weight right now won't budge. I had to break down and buy a new pair of jeans (size 14 of course) and a few new shirts just to be comfortable. All the clothes I fit in just a few months ago are now shoved to the back of the drawer. On one level I care, and on another I don't. It was nice fitting into the smaller (usually more fun) clothes and not hating how I looked in pictures. Now I'm back to just not looking at myself in the mirror and appreciating not being cold. It doesn't matter. I'm not less lovable in bigger clothes if the amount of hugs I get are any indication of that. I just hate that when I'm done with the steroids eventually that I have to start my whole weight struggle from the beginning again. But I'll happily take that over pain.