He's a little blurry but our RRBB has started smiling. It's pretty terrific to see him open up like that and it makes us both a little giddy. It's been a hard few days. The SFDD has decided for us to stay the course -- I am taking more meds, but they are the same meds, so we can keep breast feeding for now. As I'm still having disease symptoms, they are slight, but they are there, and that means that chances are we'll be taking the "big guns" meds in January to try, yet again, to calm the storm. The disease is a light rain at the moment; they want to completely clear up the clouds, bring on the sunshine, but because the weather system inside my body remains so severe, it's touch and go until the drugs start to work.
What all of this means for me -- being stable but on the edge -- is more blood work, heading to the hospital every 10 days, more doctors appointments and lots of careful monitoring. But, we get to breast feed. I think the sacrifice is worth it. I'd rather give him three months than two, but I also don't want to be on dialysis in six months either. The thought terrifies me. And my lesson for this week?
Funnily enough, the first thing that happens when you become a parent, regardless of how old you are, how far along in your life, people come forward with advice. This doesn't bother me in the slightest, I am a big giver of advice, so you can't be obnoxious about receiving it (and I can't remember if I've talked about this before), and the #1 thing that everyone tells you: rest, rest, rest. It works both with the Sickness and with the Newborn. Yet, the prednisone makes you so wired -- it's kind of like being on speed (not that I've done speed; I'm extrapolating) -- that it's impossible to rest. The drug keeps you awake all the time. The RRBB keeps you awake the rest of the time. This means that I am wiggy with lack of rest, my body under siege and no release on the horizon. Some days I kind of feel like that boat in that George Clooney movie (I know, it's not very good, The Perfect Storm). Right now, I'm Marky Mark floating on the horizon. In my case, I know I'll be rescued. I'm not going to drown but getting through the irony of having to rest but being physically unable to do so because of the very drugs that are meant to keep me alive, well, it's an interesting conundrum.
I've signed up for Restorative Yoga in January. I'm going to do private lessons. They will be expensive, and I know Gail Vaz-Oxlade wouldn't approve, but I need to heal and it's one way that I know works for me. I'm also keeping the crazies at bay by making lists and trying to cross things off one-by-one. It's a recurring theme for me -- trying to get a handle on the psychological side effects of the disease by doing small things that I actually do control -- and it's the first thing that gets out of hand when the psychosis hits. Thankfully, and I don't know quite why, but I am thankfully free of this side effect this time around. That's not to say that I don't break down every few days, bawling, and I know it's because I'm just so bloody tired but, on the whole, I am not wanting to drive my car into oncoming traffic (that's what happened the first time I became sick) or jump off the top of a tall building (which happened the next time I took this much prednisone).
Laying it all out, the rareness of the disease means that I am a bit of a science experiment for my doctors. It's always worked well for me in the past, and patience to truly wait for everything to calm down is needed. I'm finding that in books right now. I'm finding that in little moments here and there, writing here. Truly, as long as I keep putting the words down, taking them from my brain and putting them out there, I can keep a little bit of myself back from the disease. It doesn't get to own all of me. Even if it feels that way a lot of the time.