Guest guest Posted November 12, 2003 Report Share Posted November 12, 2003 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 x Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2003 Report Share Posted November 12, 2003 Well said. I agree. Sara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2003 Report Share Posted November 12, 2003 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. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2003 Report Share Posted November 13, 2003 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. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2003 Report Share Posted November 13, 2003 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 x Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2003 Report Share Posted November 13, 2003 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. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2003 Report Share Posted November 13, 2003 In a message dated 11/12/2003 6:43:12 PM Central Standard Time, kristine.patrick@... writes: e WAIT A GO KRISTINE!!!!! I TOTALLY AGREE!!! DEB A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2003 Report Share Posted November 13, 2003 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2003 Report Share Posted November 13, 2003 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2003 Report Share Posted November 13, 2003 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2003 Report Share Posted November 13, 2003 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) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2003 Report Share Posted November 14, 2003 I agree e...the banter is precious! Barbara Mum to Nicky 15 wocf and Kristy 13 wcf Quote Link to comment Share on other sites More sharing options...
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