from someone in their thirties or forties who's been involved with CF for 15 years tops in a sort of academic 9-5 way, when we've all been fighting it every hour of every day and night for 30 or 40 years in a sort of physical, kinesthetic, life and breath way, I want to tell that person to read this blog entry :
http://fromatopink.wordpress.com/2010/07/21/a-look-into-the-thoughts-of-a-cfer/#comment-518
by a lovely Cystic Gal who really needs some support and just isn't getting what she needs from her non CFers and the g-damn internet.
And p.s., I'm waayyyy more likely to have gotten all of my bugs from the doctors that come in my room, insist on shaking my hand, sit down on my bed after they've sat on 100 other patient beds, dangle their germy ties in my face, or sloppily forget to wash their hands-wrists-stethoscopes, than I am to catch comething across a room from another CFer with a mask on.
And don't CFers still get together at the CFRI conference? And isn't there a big difference between going to camp in the 80s and doing our nebulizers in the same room all at once, and then sleeping side by side, than meeting for lunch once a freaking year to feel like you know someone who is at all like you- aren't those things different? AREN'T THEY?!
Okay, enough about that. I guess I'm ranty this July!
I went to camp one year when I was 10!! LOL
ReplyDeleteAnd look,you're not dead yet!! ha?
ReplyDeleteI'm with you on this one CG! I even had another adult CFer walk along side of Lucy and her Team this year at the GS walk. We should be united (safely) and fight CF together! :)
ReplyDeleteI like ranty CysticGal. What's more, all the rants make sense - they're not illogical, angry for angry's sake tirades, they're legit!
ReplyDeleteAMEN ;)
ReplyDeleteI'm with you. We have "one of those" CFers around here who didn't want to meet me, but likes to call at all times of the day to talk about fundraising. I don't give a rat's butt about fundraising while I'm up to my neck in HTML and CSS code, but I'd take a couple of hours to go meet you at Panera for a smoothie and make a *real* connection. Wear a mask if *you* want to and stop being so paranoid.
ReplyDelete/end rant
I'm going to the CFRI Retreat this year! I went to the CFRI camp from 1984-1994 too. Then I got all busy with college and work and stuff. Anyway, I'm so with you.
ReplyDeleteThere are guidelines now though. No MRSA cultured for 2 years and no b. cepacia at all. And no pan resistance. Since I only have PA and I'm still susceptible to some abx I can go. Yippee!
I have blogged about this exact subject. . . Myself and my close friends who had the PRIVILAGE to attend CF camp much of my youth feel bad for the next generation of CFers. I would not exchange one minute of CF camp and friendships and support for 'less infections'. I agree that we can pick up 'bugs' from hospitals just as likely as from another CF patient!
ReplyDeleteIt's not fun thinking no one understands you and the internet helps but it's not the same as living, breathing, real life encounter with a fellow Cystic! :) Much love!