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RE: Banter

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I totaly agree - I was feeling really down before I logged on tonight and

feel much better. We can't allow CF to overtake our lives. I know it's the

first thing we think about in the morning and the last thing at night but we

still

have our lives to live and I feel we must also allow our children to live

their lives - after all that's what we are all fighting for.

Lots of love to you and yours

Sheila

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Amen e, I could'nt have said it any better. I feel that Cf

can't control us, we have to control it.

Margo

> 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.

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e,

I agree. The Banter is so funny sometimes. I think we all need to

laugh and our non cf friends wouldn't find the medical stuff funny. I

know I for one usually flip through the medical stuff unless it's simple

and it makes my head spin. I like to get on her at night and she what

everyone is up to. What so and so did for Halloween, what people plans

are for x-mas. I even learnt what Jewish people do at x-mas through

this list. So please whatever happens don't lose the banter.

(Australia)

Banter

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.

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I THINK THAT IS A yes VOTE FOR BANTER FROM ALL OF US.

YEAH FOR GREAT BANTER & LOTS OF LOVE TO EACH OF YOU!!

LOVE & HUGS & BANTER,

GRANDMOMBEV

Re: Banter

I totaly agree - I was feeling really down before I logged on tonight

and

feel much better. We can't allow CF to overtake our lives. I know it's

the

first thing we think about in the morning and the last thing at night

but we still

have our lives to live and I feel we must also allow our children to

live

their lives - after all that's what we are all fighting for.

Lots of love to you and yours

Sheila

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e,

I agree! we use this board for support, with both medical and emotional issues

related to CF. Some of the seemingly " off topic " things (especially the funny

posts) can help us when we are feeling down or stressed because of CF. If it's

in my life, chances are ,it is somehow related to CF anyway! We love the

banter! It's what helps to make this board relatable to every family.

I use the links that people send to do research but research doesn't make me

feel like a regular human rather that a Neb and PT machine. the way the banter

can!

Banter

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.

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e, , , I completely agree with all of you. It does feel good

to be able to get on here and say that Piper has gained weight, that she is

doing good, to be able to get on here and ask a question about anything and know

that I will get an honest, sincere answer from several people. That is

something that you can't get from " Medical Information " or really even a Doctor,

it has to come from someone who has been there and done that and knows all of

your fears and frustrations. I haven't posted much here lately due to school

and kids, but I do lurk and try to read every post. So to be able to get on

here and read the " off-topic " posts helps me to keep my sanity.

Katy (who LOVES the Banter)

mom to Austin 4 no CF & Piper 16 months w/CF

Katy

Mom to Austin 4 no CF & Piper 15 months w/CF

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e, , , I completely agree with all of you. It does feel good

to be able to get on here and say that Piper has gained weight, that she is

doing good, to be able to get on here and ask a question about anything and know

that I will get an honest, sincere answer from several people. That is

something that you can't get from " Medical Information " or really even a Doctor,

it has to come from someone who has been there and done that and knows all of

your fears and frustrations. I haven't posted much here lately due to school

and kids, but I do lurk and try to read every post. So to be able to get on

here and read the " off-topic " posts helps me to keep my sanity.

Katy (who LOVES the Banter)

mom to Austin 4 no CF & Piper 16 months w/CF

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Dittos e and !!

Cf is a time stealing disease that affects our TOTAL lives as parents. This is

especially true for those of us that stay home. I'm not some compartmentalized

piece of equipment that can only think of cf if I need to and then switch to

only think of other things. I need a place where I can vent, rant, cry, share,

jump for joy, AND learn. That place is here. You can always join another list

that offers a great deal of info.; there are several to choose from. But there

is only one place like here.

Dawn mom of 4, 7 and under, the youngest wcf

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Wow! What thread.

I sure hope I didn't offend anyone in my earlier response a few days

ago.

I don't really come here for:

Banter – I do hit the MSN CF chat on occasion for Banter, especially

if it is a week I am traveling and I have nothing else to do in the

hotel.

Or

Medical articles – They are cross posted on almost all the other

lists. I'm not smart enough to understand most of them anyway.

I come here for one thing advice from CF parents including,

explanations of the medical articles, news of changes in care, how

other clinics handle things so I can question our docs, and to

share on the few occasions I have something to contribute.

This is the Absolutely Best Place I've found to get that

information! And clearly it is working for 700+ other members

Don't misunderstand, I don't mind that banter, it just not the

primary reason I am here. So I agree with most everyone's response

to this, keep the banter it's important to members of this group.

I don't think anyone suggested doing away with the Banter either.

has a good point, as others have eluded to, it sure would be

nice as a new parent to get a list of required supplies, or perhaps

a Frequently Asked Question when you are new to this. But as

everyone else has pointed out, who decides what is important? And

how do you control it from being out of date.

3 Important things I've learned on this board. I'm sure there are

others, but it's getting late, and I have a hockey game to watch .

Go Blues! (see the banter I snuck in there!)

1. Pari Pro Neb Ultra – What a Time saver

2. Control III – Some home health card outfits are still

telling people to use vinegar

3. Take control when you are in Club MED. Speak up at all times

to get the right care.

Mike

21m w/CF, Micaela almost 4/she'll remind you if you forgot.

married to me for 5 years Tomorrow! (<- More banter)

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