Showing posts with label CF community. Show all posts
Showing posts with label CF community. Show all posts

Wednesday, May 5, 2010

I'm in with the in crowd, I go where the in crowd goes



I'm in a funk. I know, I know, I am always in a funk. The truth is, not really. But the past 6-8 months have been not so good and I tend to write when I am down rather than up, it is my catharsis.

My trip to Boston was amazing. I've never done a CF meet up, never went to camp or any retreats or conventions. I met Paul and that was amazing in itself, but to look at the picture of 15 CFers in one place takes me breath away (bad cliche, sorry). It was just so awesome, I was overwhelmed by the beauty of it.

Standing at the cemetary, looking at Paul's name on the grave and the ahses and the purple rose and the faces of all the people who came to celebrate his life moved me in a way I can't explain. And maybe, just maybe, it made me a little less scared about CF. Which makes no sense at all since I put myself in the most germ precarious situation of my life - but you get the point. Not that I am not still frightened of the gravity of Cf, because I am. While we were in Boston we lost two more, CF is a nasty mug. But I feel secure in the comminuty I have chosen to participate in. The Cf community as a whole is wonderous, but I don't know every CFer on earth, only the CF community I am a part of, the folks in the picture and some lots of other special ones who weren't there for whatever the reason. You guys have my heart.

I feel like I carry a lot of baggage around from Cf and it manifests in some not-so-nice ways sometimes, so to know I have the support of my CF community means the world to me. Truly, no one but you all can understand. Not for lack of trying, but you gotta have it to get it.

Thursday, October 29, 2009

I thought it was a bird but it was just a paper bag


I want to try to be postive and uncomplaining as I write this post. But the thing is I am exhausted and I have some seriously upset bowels, and I can't sleep (med induced insomnia??) and I have been ignoring my kids and I am tired and I don't see how this is suppossed to make me get better, my throat hurts, I am coughing up a ton, look like a greasy spoon, and the little one has a fever (her turn with H1N1?) So....how to make lemonade out of that pile of rotten citrus fruit?

5 good things for today:

1) Only 7 more days to go
2) we've financially caught up from my husband's weel long non-paid H1N1 work vacation
3) some solicitor today told me that I didn't look old enough to be the home owner and the guy with the infusion pharmacy said I looked too little to weigh what i do (which I guess was a compliment)
4) special hot cocoa!
5) October is almost over, November can't be any worse, can it?

OK, number 5 was cheating, but serioulsy I am so ready to move on from this month - as if the changing of the month will change anything, but it is symbolic, yes?

Since I have been sick I have been pretty holed up inside and so I have spent far too much time on the internets. But today I was watching some of the vidoes at Cfvoice.com, and I was really struck by this shared experience we all have. Just listening to people's voices, watching them breathe...it just kind of hit me (as things do from time to time) how important my CF community has become to me...so for that, I add my 6th gratitude of the day....you all. Much love, all of you.