Welcome Kim. My name is Jo and I'm from Australia. I live on the West Coast of
Australia (Sydney is on the East coast to give you some idea of what part of
Australia I'm from) in a state called - and you have to marvel at the creative
genius behind this name - "Western Australia" or just W.A. for short. I live in
the capital city of W.A. - Perth, which has a population of just over 1 million
people. We have about 250 - 300 people with CF in Perth (including children of
course) and though we have about 4 CF doctors for children up to the age of
around 16 or so, we seem to only have 1 doctor for the adults. Why? Government
funding I suppose, the head of respiratory at the hospital housing the CF Clinic
for adults pitches in and takes on patients plus there seems to be a
"respiratory team" that takes over from the CF specialist - Gerry - when he's a)
sick b) on holidays c) at a conference. He's an extremely talented doctor so
he's in high demand. Luckily, Australia has a pretty cool
medical system so you don't have to be rich to get the best doctor. You just
have to have CF.
I have made friends with many CFs over the years (I'm now 36) and this has been
really good and really bad. As a child I went to a few camps (we don't have
these now that doctors have finally realised that we pass our bacteria to each
other) and made some friends including one really wonderful friend who promptly
died about 8 months later. I suppose that doesn't seem like very long to know
someone. But we became very close. I was 16/17, he was 17/18 and I grieved for
him for many, many years afterwards. For me, he was one of those people that
made an immediate impression - and I felt that if I stopped grieving, his life
would no longer have made an impression... but then, who knows with these
things? Making friends with other CFs can be great - no one knows what it's like
to hav CF except other CFs right? But then, you learn that we all have CF to a
different degree. We're all at a different point on our journey with CF. I
remember feeling guilty when I talked to people with CF who
were obviously so much sicker than me. Now I feel guilty for being unwell. Like
I shouldn't talk to those who are healthier in case I make them sick. What I'm
trying to say is that nobody knows what it's like to be you with your CF.
Sometimes I feel more empathy from someone who is completely healthy than I do
with someone with CF. And these days everyone is so nervous about catching bugs
from each other. You can see it in their eyes and their body language when you
go up to say hi. They're polite, they'll smile and chat - but they're not really
there, with you in the moment. They're thinking about getting the hell away from
you in case you've got some bug they don't have etc. etc. Which I find annoying
and ignorant. Because the reality is that everybody, anyone, at any time, can be
carrying some bug or another. Pseudomonas aerignosa, cepacia, multi-resistant
staph aureas, staph aureas.... they're everywhere. We recently had a company
recall a batch of mouth wash because it was
infected with Burkholderia Cepacia.
See Kim, you're not the only one who can natter on.
Be safe everyone and look after yourselves.
Jo





---------------------------------
Find local movie times and trailers on Yahoo! Movies.


[Non-text portions of this message have been removed]