Banter

[Guest guest]

Please allow me to step up on my soap box and contribute my two

cents worth to the " improvements " that have been discussed. Before

I found this group I felt very alone. There was nobody I could talk

to about my fears, my frustrations or share the small milestones

with. Trying to explain to someone that gained a pound, or her

culture came back positive with PA, or her pft's were up oftentimes

would solicit a look of " why are you speaking a differnt

language " .and I would have to begin with the history of CF and it

just got to be such a hassle. Here, I can say " woohoo our pfts were

up " and everyone will respond and say " hooray! " and I know that this

is a truly heartfelt response from all of the people here. In

addition, nobody can relate to my daily routine without thinking "

boy, that stinks! " Whereas here, people say " keep up the good work,

you are a good mommy " . That to me is what this board is all about. I

get so much more out of the " banter " than I do the medical info. I

can always search the net for the medical info. I am not oppossed to

creating a file/forum for tech/med info, however, alot of that

information comes with personal feelings and experiences.

I also have a problem with the " off topic " issue. My life does not

revolve around CF and often times we all need a break from ALWAYS

discussing the disease. When people share non related CF stuff it

makes us feel like we are still human, and that this disease does

not control our lives.

Yes, putting the research and medical info into a file that is

easier to access is a great idea, but please do not take away the

banter!

e

Mom to , 10 wcf, Ian 13 nocf ,and loving wife to a very

understanding and patient husband Damon.