It’s been a hard week. I had a very disappointing visit with the SFDD last Wednesday morning. My creatinine levels have spiked again for no discernible reason. So, I can’t taper the prednisone any further, and I’m back to bi-weekly blood tests, which is tiresome and exhausting, to say the least. And I know I shouldn’t complain, that there are far sicker people in the world, people in far worse conditions than I am, but I had trouble seeing beyond my own frustration with fighting an unchanging disease for the last six months. You start to feel as though you are losing the battle that might cost you the war or, in my case, an organ. We are not remotely there yet but I’ve never been so scared that the disease won’t get better, wholly better, than I am these days.
I’ve cried a lot. I’ve felt guilty for thinking terrible thoughts — was this the right decision to move forward, why didn’t I speak up when I was feeling so poorly, could I have prevented the episode from becoming so dramatic. Probably not. There was no way to tell and we ended up coming out of it alive and with a beautiful baby that we adore so much it hurts. But that doesn’t stop me from being so utterly and completely sick of being sick these days. When the SFDD told me my creatinine had gone way back up, it was everything I could do not to burst into tears in his office. He’s calm. I’m a wreck. My stomach is in knots and there’s nothing I can do to fight the despair.
My RRHB keeps telling me that things are no different than they were when they let me out of the hospital all those months ago. And he’s right. I’m not getting worse. The disease is stable or else they wouldn’t let me go home and “stay the course” (SFDD’s words; not mine). And taking 15 mgs of prednisone is way better than taking 60 mgs of prednisone. And so, we continue. And continue. Six more weeks until I see him again, six more weeks of being able to breast feed, six more weeks before they talk again about another drug regiment, and six more weeks of trying to think positively, of smiling, of playing, of giggling, of trying to relax and not worry so much about it all.
Way back in the way back, when I was first diagnosed with the disease, I was still a teenager. I had that invincible feeling about it all, there’s no way I’d let the disease kill me — it simply wasn’t an option. You just don’t realize the severity of it all at that point. I went to university, to grad school, started working, got married, and have had a baby — all things that weren’t necessarily possible the very moment I was diagnosed. That’s the trouble with the flares, with the unstable test results, they refuse to be a part of the big picture. They trap you in the downward spiral of letting the disease win — as if mind over matter actually makes a difference. All these years later, I’m far more temperate in terms of how I think about it all. I know stress and worry makes it worse. I know that being healthy is ever-so important. I know that I am lucky to live in a country where I have access to medical care that has consistently and, almost effortlessly, saved my life on more than one occasion. Still, I’m angry.
So, I’m trying not to let it show. I’m going to bury it for a little while. I’m going to sob, if I have to, and then laugh uncontrollably at some stupid thing that my RRHB says. I’m going to feel sorry for myself and then berate myself for doing so. Then, I might take a walk. I’ll string some words together and then take a deep breath. It’s funny, we all use war metaphors when “fighting” diseases — and I can’t help but hear echoes of Shakespeare’s Henry V, the Kenneth Branagh film, which I haven’t seen in years, but that great St. Crispin’s Day speech, a sword thrust in the air. Maybe that’s what I need: a great big sword to thrust in the air.