Well from recent memory, I can only recall 1 meeting with another person with CF. It was at the hospital, and we only spoke for about 10 minutes...across the room. Like you kneppbrandon, I feel very alone. But I'm not down about it, I keep myself occupied. I have all non-CF friends, and many wouldn't even know I had CF, because in my experience, ppl treat you differently; kind of like you're a charity case or something. I can basically do everything anybody else can do, I just have to go the extra mile, every MILE. I'm not gonna lie, sometimes I get sick and tired of just being sick and tired, but I believe we all have a special destiny; we are all very special ppl.
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I used to know a lot when I was younger before "isolation" restrictions started, and I went in the hospital a lot. Most of us lost touch, or they died. If you don't have MRSA or Cepacia you can check out the annual CFRI Adult CF Retreat, which is right after a CFRI weekend education conference. I'd recommend both. It's on the peninsula below San Francisco, I HIGHLY recommend it if you can. I've met the coolest people there, it's pretty evenly split between adults with CF, adult CF transplantees, and healthy family and friends. It's a week-long retreat, they take precautions to prevent cross-infection, but I think it'll be incredibly therapeutic for anyone one with that "alone" feeling. A number of people fly in each year for it, but most live in CA, about 20-30 attendees usually for the whole week. <a target=_blank class=ftalternatingbarlinklarge href="http://www.cfri.org/events.shtml">http://www.cfri.org/events.shtml</a>
I used to know a lot when I was younger before "isolation" restrictions started, and I went in the hospital a lot. Most of us lost touch, or they died. If you don't have MRSA or Cepacia you can check out the annual CFRI Adult CF Retreat, which is right after a CFRI weekend education conference. I'd recommend both. It's on the peninsula below San Francisco, I HIGHLY recommend it if you can. I've met the coolest people there, it's pretty evenly split between adults with CF, adult CF transplantees, and healthy family and friends. It's a week-long retreat, they take precautions to prevent cross-infection, but I think it'll be incredibly therapeutic for anyone one with that "alone" feeling. A number of people fly in each year for it, but most live in CA, about 20-30 attendees usually for the whole week. <a target=_blank class=ftalternatingbarlinklarge href="http://www.cfri.org/events.shtml">http://www.cfri.org/events.shtml</a>
I used to know a lot when I was younger before "isolation" restrictions started, and I went in the hospital a lot. Most of us lost touch, or they died. If you don't have MRSA or Cepacia you can check out the annual CFRI Adult CF Retreat, which is right after a CFRI weekend education conference. I'd recommend both. It's on the peninsula below San Francisco, I HIGHLY recommend it if you can. I've met the coolest people there, it's pretty evenly split between adults with CF, adult CF transplantees, and healthy family and friends. It's a week-long retreat, they take precautions to prevent cross-infection, but I think it'll be incredibly therapeutic for anyone one with that "alone" feeling. A number of people fly in each year for it, but most live in CA, about 20-30 attendees usually for the whole week. <a target=_blank class=ftalternatingbarlinklarge href="http://www.cfri.org/events.shtml">http://www.cfri.org/events.shtml</a>