this whole damn world is on fire

My FEV1 is 58%. It was 71 in November and 74 before that. 25/75 was 22, 37 previously. The question is WTF? I really want to blame the TOBI my doc has me trying in place of colistin, as i recall the last time I tried TOBI, a la 2006, I was at 50% and felt much the same I do now, tight, congested, and SOB.

My fears are 1) that the acinetobacter I ~maybe~ cultured last month is fo' realz, 2) that this is somehow related to H1N1 and maybe permanent and c) that i have to accept a new baseline that doesn't start with 7_.

My fears are coupled in a few other ways, too. Several people are waiting or new lungs, one beautiful girl just got a set...hope abounds in this, the season of hope. and I sure don't want to rain on anyone's parade. But man.

You know what got me? this. This story about a girl I didn't even know. I just felt pissed off. I guess I was in the right mental space to have this affect me the way it did, in light of the recent carnage seen in Cfland. But I just felt delated: that there is hope in tx, that there is such devastation. I remember Paul telling me once something along the lines of he'd wished he'd never let himself believe there was another life out there wiating for him, those few good months he had. I heard him, you know, but I didn't really understand. I mean, I thought I did. But for whatever reason, that article really put the spit in the cup for me.

I always assumed I would get a tx, I mean ever since my uncle had one and did so well with it. The dude is 57 and 13 years out - just doesn't get a whole lot better than that. I thought that was the way it was. Tx and wah-la. I know different now...

and so I haven't been sleeping well. Well, no, I have, but it is induced in some way - because I can't get the demons to back off. These little green guys that come in and stare at the back of my head when I'm trying to sleep, whispering all the nasty fears that I know we all have right into my ear.

My daughter crawls into bed with me pretty much every night. I just stare at her. She loves me so much, and the thought that I could leave her motherless before she is grown is so suffocatingly devastating I can hardly live with myself.

Which makes me feel, that when the time comes, if I make it there, I will have to try for the TX. Though I don't know that I want to. I don't know if I can handle smashed up hopes. I don't know how to change my thinking, either. and the one person I would have talked about all this with is gone.

so, fuck.