i am sorry but i am so tired of getting these types of questions. there is a lot on the web about cf and a lot on this site. so for all those doing projects----do your own research!! seems kinda lazy to just saY..whats cf? can you help?.. find out some facts and if you have a specific question then try asking on that topic only.. its getting old people! catherine 25 w/cf
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No more projects!!!
- Thread starter anonymous
- Start date
Um i don't get you because i only needed to talk to a REAL PERSON who has CF or a family member.i know how to research YOU SHOULD BE MORE UNDERSTANDING AND LET PEOPLE DOWN IN A POLITE WAY.just tell them what not to ask but don"t say don't ASK that makes people not want to ask and then who you going to ask for support for cf think about that please.DON'T BE SO RUDE AND SELF-CENTERED.JUST TELL THEM HOW YOU FEEL AND SEND THEM TO SOMEONE WHO ISN'T TO TIRED OF HELPING PEOPLE WITH THEIR PROJECTS OR IS NICER .I KNOW ALOT OF PEOPLE MAY USE YOU BUT NOT EVERY PERSON IS THAT WAY.OK <img src="i/expressions/face-icon-small-shocked.gif" border="0"><img src="i/expressions/face-icon-small-disgusted.gif" border="0"><img src="i/expressions/face-icon-small-happy.gif" border="0">
ClashPunk82
New member
Maybe if people were more courteous when asking for help on a project. Kindly ask specific questions and leave your name. Don't just spam and make many threads about having to do a project and then never asking any questions and never returning to the thread. It's pointless and a waste of our time here.
<blockquote>Quote<br><hr><i>Originally posted by: <b>Anonymous</b></i><br>Um i don't get you because i only needed to talk to a REAL PERSON who has CF or a family member.i know how to research YOU SHOULD BE MORE UNDERSTANDING AND LET PEOPLE DOWN IN A POLITE WAY.just tell them what not to ask but don"t say don't ASK that makes people not want to ask and then who you going to ask for support for cf think about that please.DON'T BE SO RUDE AND SELF-CENTERED.JUST TELL THEM HOW YOU FEEL AND SEND THEM TO SOMEONE WHO ISN'T TO TIRED OF HELPING PEOPLE WITH THEIR PROJECTS OR IS NICER .I KNOW ALOT OF PEOPLE MAY USE YOU BUT NOT EVERY PERSON IS THAT WAY.OK <img src="i/expressions/face-icon-small-shocked.gif" border="0"><img src="i/expressions/face-icon-small-disgusted.gif" border="0"><img src="i/expressions/face-icon-small-happy.gif" border="0"><hr></blockquote>
How about you get bent. Go read. We are people, not experiments, projects, or thrilled that people hassle us. I would bet that if you truly did your research, there woud not be a single question you should have to ask.
How about you get bent. Go read. We are people, not experiments, projects, or thrilled that people hassle us. I would bet that if you truly did your research, there woud not be a single question you should have to ask.
OMG, I courteously answered your question on one of the other 3 or more threads you posted. STOP creating more posts about the same thing. Are you aware that you CAN be banned from this board, even as an annonymous poster?
I see it your last post that you came onto OUR website and told US how to and how not to answer peoples questions ("tell people what not to ask but don't say ASK"), now I am telling you- before it gets ugly- GET OFF OF MY WEBSITE. MY in the sense that we are a family here on this site and we are here for eachother and for support; we welcome new people everyday. We are more than happy to answer questions of those who come for knowledge (for whatever reason, school project, just to know, find a cause to raise money...) when SPECIFIC QUESTIONS are asked. Now I see you did ask a semi-specific question and I took MY time to answer it. Luke also posted that you leave your email address for him, he will send you his home phone number and he will happy to do an interview for you. Apparently you are just looking for an easy A. Now take your lazy a** off this website. Oh and by the way, you never did take the time to thank you for wasting my time on you so I have to agree with the last poster, go get bent. It has nothing to do with you not having CF or not knowing someone with CF-NOTHING. It has to do with the fact that you are a VERY rude, immature and lazy person who wants to waste OUR time instead of bettering yourself.
Julie (wife to Mark 24 w/CF)
I see it your last post that you came onto OUR website and told US how to and how not to answer peoples questions ("tell people what not to ask but don't say ASK"), now I am telling you- before it gets ugly- GET OFF OF MY WEBSITE. MY in the sense that we are a family here on this site and we are here for eachother and for support; we welcome new people everyday. We are more than happy to answer questions of those who come for knowledge (for whatever reason, school project, just to know, find a cause to raise money...) when SPECIFIC QUESTIONS are asked. Now I see you did ask a semi-specific question and I took MY time to answer it. Luke also posted that you leave your email address for him, he will send you his home phone number and he will happy to do an interview for you. Apparently you are just looking for an easy A. Now take your lazy a** off this website. Oh and by the way, you never did take the time to thank you for wasting my time on you so I have to agree with the last poster, go get bent. It has nothing to do with you not having CF or not knowing someone with CF-NOTHING. It has to do with the fact that you are a VERY rude, immature and lazy person who wants to waste OUR time instead of bettering yourself.
Julie (wife to Mark 24 w/CF)
thefrogprincess
New member
Here here! If these people would just look at the past posts they would get all the answers they need!!!!!
I replied to one of your (many) threads, and said 'what questions did you want to ask'..and you never wrote back..also I don't know what 'paper proof' is. Luke offered to talk to you and Julie answered you too. Do you not see what is annoying us?? Well I'll tell you whats annoying me.
Im 17 and until last year, had never spoken to ANYBODY else with cf. I had this feeling of lonliness that I knew none of my friends could relate to. I was different, in pe, I would sometimes run out of breath and I was classed as 'unfit' by other people. Of course it never occurred to them that somebody with a lung function of 40% would have difficulty running a mile!
So then I come here, and I see LOADS of other people who too feel the way I do. I belong. (It sounds cheesy but its true) I see people who are in their 20's, 30's and 40's. Before I thought most people usually didnt make it to their 25th birthday.
Julie is right, we're a family. We don't mind answering specific questions for projects. Its good to get awareness for cf. But we are NOT here to sit on a wall, with signs round our neck saying 'information' on them, ready to tell anyone who passes and ask OH WHAT IS CF??
Sorry for rambling, DO SOME RESEARCH...and don't spam our forum again, thank you.
Shamrock
Im 17 and until last year, had never spoken to ANYBODY else with cf. I had this feeling of lonliness that I knew none of my friends could relate to. I was different, in pe, I would sometimes run out of breath and I was classed as 'unfit' by other people. Of course it never occurred to them that somebody with a lung function of 40% would have difficulty running a mile!
So then I come here, and I see LOADS of other people who too feel the way I do. I belong. (It sounds cheesy but its true) I see people who are in their 20's, 30's and 40's. Before I thought most people usually didnt make it to their 25th birthday.
Julie is right, we're a family. We don't mind answering specific questions for projects. Its good to get awareness for cf. But we are NOT here to sit on a wall, with signs round our neck saying 'information' on them, ready to tell anyone who passes and ask OH WHAT IS CF??
Sorry for rambling, DO SOME RESEARCH...and don't spam our forum again, thank you.
Shamrock
I think you guys are forgetting that most people have no clue about CF, let alone where to get good info about it. I think when folks come here, they are doing the right thing to educate themselves. It is always good when you can establish contact with an "expert" and ask them questions. I believe these boards should be open to ANYONE with interest in CF for ANY reason.
A person shouldn't be made to feel stupid for asking questions. You always have the option not to read their posts or respond.
I think more people should ask us questions, it spreads awareness, and educates folks on what LIVING with CF is really like. You don't have to be involved in their education if it bothers you so much, but please don't be rude because they started here.
A person shouldn't be made to feel stupid for asking questions. You always have the option not to read their posts or respond.
I think more people should ask us questions, it spreads awareness, and educates folks on what LIVING with CF is really like. You don't have to be involved in their education if it bothers you so much, but please don't be rude because they started here.
Think about all the dumb questions WE ask on this board! If some folks would just "do a little research" of their own they wouldn't have to ask about getting pregnate, what enzymes do, what CFRD is, how you get diagnosed, what air purifier is best, what are the odds my kids will have it, where the good clinics are, what TOBI does, how to gain weight, how to deal with insurance, when to file for disability, what getting a transplant is like, what the hell clubbing is, how a picc line is different than a port, ect., ect.
My point is, these are all things we could find answers to in other places, but we come HERE because we know we are the best source. Try to remember that next time a visitor shows up. Mmmm-k
Debbie
24 w/ CF
(accidently logged out)
My point is, these are all things we could find answers to in other places, but we come HERE because we know we are the best source. Try to remember that next time a visitor shows up. Mmmm-k
Debbie
24 w/ CF
(accidently logged out)
ClashPunk82
New member
I think the poster here is upset because the person asking for help on a project never asked any questions. She just spammed the boards with numerous threads saying I need help with my project and that was it. No questions were asked and she never returned to any of the threads. I am more than happy to help someone if they have questions but if they don't have any then it's a waste of board space.
Ooooohhhhhhh, here is a thought! How about NOT ANSWERING these posts if you don't want to and just IGNORING them. Why get so wound up? You are just making yourselves (and all CFers) sound like mean people! Is it really that hard to do? Just my 2 cents! Put your energy into where it should go.....the questions that really matter! <img src="i/expressions/rose.gif" border="0"><img src="i/expressions/face-icon-small-wink.gif" border="0">
ok debbie and the last anonymous poster... you two must have missed the 4 threads the same person put on this adults site, the 3 on the families site and the 9 on the teenage site-some of which, thank God the administrators deleted. Please check out the two locked posts where this anonymous poster who came to ask questions about CF created 15+ different posts BEFORE asking an actual question. Then when myself and some others took the time to answer the question, that wasn't satisfactory to them. Luke offered a telephone interview to answer all the questions, but the ungrateful person rudely turned him down and insulted this site.
I must say that I find myself more than willing to answer specific questions. I remember a time in my life when I knew NOTHING about CF and I remember how difficult it was to understand things, so I can put myself in their shoes. I didn't turn to the internet 6 years ago though, I turned to books. Evenutally I found this site and have had a grip of questions to ask-which everyone on here has been more than willing to answer, and I have also answered a grip of questions. it goes both ways. I understand that you can not locate all answers regarding CF jsut by looking around at websites, sometiems you really need to talk to real people. But we need to draw a line, and when someone comes on this site, creates more than 15 posts about the SAME thing but never asks a questions just has in the topic, "i am doing project about CF can you help" (or something like that-you'll see on the post), then people do answer the question and offer other ways to assist and they insult the person, they are going to get their a** chewed.
i belive if you saw the posts this person created (before admin deleted them) you would feel differently!
Julie (wife to Mark 24 w/CF)
I must say that I find myself more than willing to answer specific questions. I remember a time in my life when I knew NOTHING about CF and I remember how difficult it was to understand things, so I can put myself in their shoes. I didn't turn to the internet 6 years ago though, I turned to books. Evenutally I found this site and have had a grip of questions to ask-which everyone on here has been more than willing to answer, and I have also answered a grip of questions. it goes both ways. I understand that you can not locate all answers regarding CF jsut by looking around at websites, sometiems you really need to talk to real people. But we need to draw a line, and when someone comes on this site, creates more than 15 posts about the SAME thing but never asks a questions just has in the topic, "i am doing project about CF can you help" (or something like that-you'll see on the post), then people do answer the question and offer other ways to assist and they insult the person, they are going to get their a** chewed.
i belive if you saw the posts this person created (before admin deleted them) you would feel differently!
Julie (wife to Mark 24 w/CF)
Julie - I HAVE SEEN ALL THE POSTS...that is why I said what I said.....IGNORE THEM IF THEY ARE GOING TO UPSET EVERYONE. If they ask specific questions, then answer them, if they only want an easy A, THEN IGNORE THEM!!!!!!!!!!!!! I understand that you have an interst in this disease, as I do, but you DON'T have to answer EVERY post out there just because you are a nurse.
I am sorry if this comes across as rude, but you come across this way also sometime. Let's just try to ignore this type of stuff.
KFK!
I am sorry if this comes across as rude, but you come across this way also sometime. Let's just try to ignore this type of stuff.
KFK!
just an FYI for you, I answered the post for this person because I was answering their question. When they came back and insulted those on this site for #1 not answering their questions, and #2 not answering the way they wanted, I had to step up and say something. As I have stated many times before, I consider this site a "family" like situation. We will disagree sometimes, we will agree sometimes, we fight sometimes, but we are always here for eachother and we get eachothers backs. I was not going to sit here and let somebody insult my "family".
You choose not to say something, well actually that's not the case because you opened your mouth and posted something here, so I guess what you posted would be an oxymoron. So you are doing just as much to ignore these people as I am, or anyone else on this site. You have your opinion and choose to voice it-thats great, I also have an opinion and choose to voice it-so let me.
Also, there are many times I have come to this site to get my questions answered more times than I can count, there is a lot I will admit to not knowing. I use to ask about SSI/SSDI, and now I am the one offering advise based off of PERSONAL EXPERIENCE-not a medical background. I do not proclaim to know everything, nobody does. We are all on this earth to learn from eachother. But, I also do not feel I need to withold information that may be benificial to those who are asking. I have experienced a lot in my 21 years, most of it having nothing to do with CF until the last 5-6 years. My answering questions isn't based on the fact that I am a nurse, they are based on my experiences, the fact that I have a loved one with CF and have many daily experiences to share, the fact that we have gone through some unique situations (IVF/ICSI for example) and ONLY SOMETIMES based on the fact that I have a medical which occasionally sheds some light on the situation. You will see I never sign my name with RN or nurse or anything, I only mention it in situations where I feel is relevant, which is about 7 times in the last year I have been on this site.
I am sorry you feel the way you do about me, and I am sorry you feel that I am rude but you are entitled to think that.
Julie (wife to Mark 24 w/CF)
You choose not to say something, well actually that's not the case because you opened your mouth and posted something here, so I guess what you posted would be an oxymoron. So you are doing just as much to ignore these people as I am, or anyone else on this site. You have your opinion and choose to voice it-thats great, I also have an opinion and choose to voice it-so let me.
Also, there are many times I have come to this site to get my questions answered more times than I can count, there is a lot I will admit to not knowing. I use to ask about SSI/SSDI, and now I am the one offering advise based off of PERSONAL EXPERIENCE-not a medical background. I do not proclaim to know everything, nobody does. We are all on this earth to learn from eachother. But, I also do not feel I need to withold information that may be benificial to those who are asking. I have experienced a lot in my 21 years, most of it having nothing to do with CF until the last 5-6 years. My answering questions isn't based on the fact that I am a nurse, they are based on my experiences, the fact that I have a loved one with CF and have many daily experiences to share, the fact that we have gone through some unique situations (IVF/ICSI for example) and ONLY SOMETIMES based on the fact that I have a medical which occasionally sheds some light on the situation. You will see I never sign my name with RN or nurse or anything, I only mention it in situations where I feel is relevant, which is about 7 times in the last year I have been on this site.
I am sorry you feel the way you do about me, and I am sorry you feel that I am rude but you are entitled to think that.
Julie (wife to Mark 24 w/CF)
L
luke
Guest
Debbie,
I have tried to offer up some answers and I will on select occasions continue to do that, but ... it will be via phone. If I am willing to donate my time they should be able to give up 5 bucks on a phone call.
I do wonder why you take up for the school posters but you have never attempted to respond to any? Maybe, you would you like to be the designated school project responder? That would make everyone happy the posters, the complainers and the poster advocates
Just a thought....
Luke
I have tried to offer up some answers and I will on select occasions continue to do that, but ... it will be via phone. If I am willing to donate my time they should be able to give up 5 bucks on a phone call.
I do wonder why you take up for the school posters but you have never attempted to respond to any? Maybe, you would you like to be the designated school project responder? That would make everyone happy the posters, the complainers and the poster advocates
Just a thought....
Luke
I'm with Debbie ! This site gets the same questions over and over again (many posted by people w/ CF) . This is an open forum where anyone can ask and answer questions. If you don't like a post, ignore it...don't go crazy on them. With all the real problems we CFer's face, I can't believe people get worked up over this ! B/c of my disease I have learned to focus on what is important and what is not. KC
I'm a PT student that is doing research in CF because I want to specialize and help people with pulmonary diseases. I know you guys must get really annoyed with people asking you stupid questions, but some of us are sincere in our research and interest. Just keep that in mind please. And I do appreciate all of your responses to my questions, thanks!
Emily aka schmemi
Emily aka schmemi