Defintions for the site project

[littledebbie]

Okay first let me say I'm aware I could be completely wrong about this. But since it's been on my mind since it first came up I thought I would at least bring it up for discussion.
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I think that the definitions for most of these things are fairly accesible by using any serach engine like google. Or going to existing websites about CF (CFF).
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i think the majority of the time the questions get asked in forum is not so much because they can't find the information somewhere else as they just want to talk about it with people who have experienced it.
<br><br> I come here primarily to vent with peers and just socialize with others who get me in a way most my friends can't. I think myself and others also like to ask questions to try and get a feel if what's going on is normal etc. And see how others handle stuff. I think they come to get a better understanding and to also to socialize and support and vent etc.
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I guess i think a lot of the questions are a means to opening dialouge not so much a fact search.
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So i'm not sure how I feel about this project. i guess it might be okay as long as people don't take to just directing people to the FAQ and info section instead of engaging in the thread. I mean people could use it if they want but if they still post a thread i would hope everyone would still participate? i would hate to see a person new to CF or new to the site ask a rather entry level question...like what's CFRD? And get directed somewhere else.
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[LisaV]

A lot of me agrees with Debbie on this one.
On the Copd Support forum I post to we don't have the money for archives or FAQs - actually only have the money for 2 pages of posts at any one time. Stuff falls off the bottom all of the time. New people come on and ask old questions all of the time. We like it that way. We're not upset at the repetition and it makes old timers feel useful that they can answer questions (and refreshes our minds) and makes new timers feel OK about asking anything because how could they know it had been asked and answered years ago - also IMHO gets newtimes to post early on rather than just reading.
Maybe links to related info would be helpful. There are actually a lot of good sites that all ready exist that have answers to the questions we are posing.

 

[Scarlett81]

I think its fine. You can google pretty much anything-and find inaccurate information half the time.

But, its true-I think most people do ask questions here about topics to hear 1st hand experiences.
Example-I "know" CFers get hemoptysis-but the past few weeks when i got it for the 1st time, I just wanted to hear from someone that I wasn't dying, what its like for them cough blood, relating to eachother.

That being said, if they want to do this library it's really not a bad thing-it's a helpful thing. So, go for it.

 

[Chill4291]

I agree I guess... As I was reading I thought, "I dont think we need this"... (not about all of it, just certain ones I saw) and was actually surprised to see this...anyways, I agree, for the most part.

 

[Scarlett81]

That's true-we really don't need it. And to be honest-I'm NOT directing this any one person, but I don't really care about it.
But for the sake of argument, on the flip side-say a new mom to a baby who was

DX with cf googles "CF support group"-this site would probably pop up. So she comes here-if she's not a big research or internet person, and she comes here solely for support-she happens to see the list of facts and learns something about her daughter's disease. So it doesn't hurt! It can probably only do good.

 

[LisaV]

Well, if you were thinking "don't need this" while you were reading thru my list I wouldn't be at all surprised. I just did a brain dump of all the questions I've seen asked more than once. Not at all sure they need to be answered in a FAQ. Figured Julie would weed some/many out.

I <i>do</i> think we all (CFers and family members) could use more info or links on how to manage the emotional/psychological aspects of this illness. So many sites have all the medical/phsycial information in the world, but not a word or a link to info about how to manage the psychological ups/downs/conflicts or how to find counselors to help with that.

 

[Scarlett81]

SO SO SO true Lisa!!!!!! That was the point I had made in the thread. And it's a big problem in the cf community. I've had this talk with my doc before. Depression still has a stigma, and you always have to try to be "strong" and buck up. But treating the emotional aspect/depression can even help the actual disease.

It helps with the ups and downs too. Definately needs more awareness.

 

[julie]

I didn't read through all the posts on this one yet... sorry about that.

<b> Just so everyone understands WHY I am doing this, the request has come from the moderators of the forum that we have some thing like this</b> and while I agree that people can do simple searches online, MY purpose here is to not only have and create friendships, share my hard times and wallow (sometimes <img src="i/expressions/face-icon-small-smile.gif" border="0">) in other's hardships, provide support and learn more about CF everyday.... I also want to be a support system for newbies to CF and/or the CF community and I think that this would be a very resourceful additive to the site.

Interactive also means that there (in time) will be links to where people can find more information on the certain subject for which they are searching.

The defenitions/Questions are not to be used to but somebody off, because I had the same concern and I think that will be made clear in the headers for this interactive portion. Many times, especially over the weekend (but of course it seems very busy today <img src="i/expressions/face-icon-small-smile.gif" border="0">) People's questions go unanswered and I think that can be very frustrating for someone who is new to CF/the CF online community/CF community to go days without finding some information, posting something and not understanding our site seems to slow down on the weekend and getting frustrated. If it's a new CF diagnosis or a new problem with their CF, it may not be imperative that they get their answers right away, but it sure helps answer some questions and possibly alleviate some stress the faster they can find the information they are looking for.

If people choose not to participate, I understand that these are valid concerns/reasons, but do understand that this portion of the site will be going up, so if there is something you would like to see in there, please do jump in and add it-it might help someone else along the way.

 

[65rosessamurai]

I thought the explanation of all the acronyms used here, and perhaps other frequently seen jargon, such as Tobi, and its effects, as a FAQ "must".
As for the "what we need", i'm sure julie, LisaV and others put down a lot just as a brainstorm, hoping that after everything that could be thought of would then be filtered out as to what's most frequently used, and what's more of what everyone here is suggesting as "just wanting to talk about topics".
Included with the FAQ (not sure if it was added to julies spool) is a must need for "how to navigate through this forum", adding photos, generating Private Messages, and other things that haven't been yet explained for this new forum layout, and to help newcomers get accustomed faster.

 

[dyza]

I thought there already was a FAQ section. When i came here I knew a fair amount about CF, my problem was the Jargon used, as it appears to be different either side of the Atlantic. A few well chosen Questions by myself were quickly answered that gave me the knowledge and the links that allowed me to get up to speed with all you 'oldtimers'. I would have much rather have had my questions answered by an individual ,than be directed to a FAQ,by getting an indivdual response, I now feel closer to being a part of the community.