I think I can I think I can

La clinica. Things is good. FEV1 71%, FVC 90 (wow), 25/75 33%. Looks like this l'il engine is back in business.

Synergy tests and MAC results were not back yet. My guess is a no on the MAC (I hope) since PFTs bounced back pretty easily post abx. I hope so. I am in no hurry to be on long term abx. Cepacia was a no. I figured it was, but it was nice to hear anyway. I hope the synergy results show some good options though, since the working antibiotic list seems to diminish with each culture.

AND, I ran for 10 minutes straight this morning. I've been treadmilling every other day for three weeks routinely now. I had this revelation about running. Fear. I was afraid of it for some reason. I'm not sure i can explain the reason but only that I recognized it. I pushed past it. I'll be running a mile in no time - something I have never really been able to do.

I remember in my first yoga class years ago, one of the girls talked about fear. and I was like "Fear? In yoga? whatchu talkin' 'bout, Willis?" but that comment always stuck with me, and I feel like I get it now. So at that moment where I want nothing more than to STOP RUNNING, I keep going. And amazingly, I live through it and get a second wind of sorts. It's pretty cool. This is one of the things I have felt the proudest of, for many reasons: because I hate running though I have tried to do it sooo many times over the years, because it is hard to keep doing something you don't like to do just because it is good for you, because I am seeing the results. I have had the idea of a triathalon in the back of my head for years now and suddenly I can actually imagine accomplishing such a thing.

So a few posts back I started using some writing prompts from a magazine I read called The Sun. I don't think I had an overwhelming response of participants (or any)joinging me in the prompt writing department. That's OK. But, offer is open again if you want to join in. This month's topic is "slowing down." Seems like a no brainer for a CFer, but you can take it where ever it may lead. I'll get around to writing on it in the next day or so.

Peace out, homies.

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.

there's nothing as pure as the kindness of an athiest

It is the butt crack of dawn, but I couldn't sleep, so I decided to get the Vest out of the way.

I'm not sure I have much Cf related to tell. I found an old PFT print out that I shared with ym husband. I think he got it. I explained to him about how CF works to efficiently destroy the lungs and showed him my FVC and FEV1 and my 25-75 (75-25?). I explained that while I might see my PFT score jump a bit since swimming, that most likely I've lost about 30% of my lung capacity due to fibrosis...I think he understood that - that almost 1/3 of my lungs aren't working properly and never will again. And I showed him my small airways 33% and how I haven't seen an increase in that in years and so chances are that will only go down too. I think the numbers got to him. The understanding that I'd like to hold on dearly to that 70% of lung function that I've got. That onve it's gonre, it's probably gone for good. Now he understands that when I was at 54% last fall, that was a scary place to be. He seems willing to learn, willing to try to understand.

In other news, I'm being very "green" this C-mas (oh, how i hate those gimmicky catch phrases) making people tote bags and crocheted pouches and I think I might put an energy efficient light bulb in the bags and maybe a homemade chapstick.

So, as I craft, as much for myself as anything I want to take some pics of what I've made - part show offy and part recorder.



The HE-Man bag is for my little brother (he is 27, not that little) made out of a sheet I scored at Goodwill. I don't know who is getting the other bag. The owl purse I made for myself cuz you can't craft withouth making yourself a little sumthin' - the puches...well, I just learned to crochet and they are a little wonky, so I am not sure yet what I will do with them.

I am making this for the baby:




and bangs! The last time i had bangs my husband called me Linda Hamilton for a few months. I hope they look better this time.