No more projects!!!

[anonymous]

Emily, if you have anything specific I would be more than happy to answer what I can for you. It makes a differece if there's a little more background that people provide us with (like you did-thank you) and some specific questions. Even if they are about therapy and such. There is a lot of ipersonal and daily activity nformation that is not readily avilable-even on the internet and a lot of us realize that. A lot of the questions most of us get frustrated with are, "what is CF, exactly" because that shows me they have done NO research. Now if they came on the board and were like, "i am doing a project, did some research and understand CF is a genetic disease, how do parents pass that on then (or even, what exactly does the "genetic" part mean-some people really don't know) and what is the probability of a child having CF..." or "I see mention of the therapy vest, what is that, how does that work, would you say that is more/less beneficial than conventional chest PT? How long do you do your chest PT for? Something, anything to show they have done a little bit of research, even if it's on this website and they just want some clairification of things. I remember what it was like to have no clue about Cf so I put myself in their shoes, but I also remember doing my research first. I think that's the point we are trying to make.
Please do feel free to post your questions though, our intentions are not to discourage anybody from seeking knowledge.

Julie (wife to Mark 24 w/CF)

 

[Mockingbird]

<blockquote>Quote<br><hr><i>Originally posted by: <b>Anonymous</b></i><br>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<hr></blockquote>

Emily, people like you usually get more respect, don't worry. =-) It's not that people ask stupid questions, it's that they're not really interested, they just want to get their paper done.

 

[Mockingbird]

<blockquote>Quote<br><hr><i>Originally posted by: <b>Anonymous</b></i><br>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)<hr></blockquote>

Hey, debbie. =-) It's okay for people to ask stupid questions, that's never the problem. If someone's completely uninterested and just wants to get their paper done, then why should we respect that? And you're right we can easily ignore these threads, but in my opinion these people deserve to get slammed a little bit. And to tell the truth, giving answers to people who don't really care isn't going to spread awareness. To them, CF will just contine to be a report they did in Biology class.

And to prove my point, there have been poeple who came on here showing interest in what they were studying. Those people were not turned away. You've been here for a while, so I thought you would have noticed that.

Jarod
22 w/cf

 

[roblake29]

Firstly, let me say that I disagree with people coming onto this sight to ask stupid questions for school projects, and then never bothering to reply or actually engaging in a conversation about the answers people give. However, I do have an issue with what I see as the judgemental responses from some of you about people asking what you refer to as 'stupid questions'. Why dont they do some reading before they ask questions... well, let us think about this for a second. Let us step out of our respective bubbles and look at the situations from a detached position for just a second...


I think it is important to note that this forum is more than just a source of information. Yeah, I understand that there are people out there who will have no interest in CF other than for the paper they have to write or project they have to do, but there are others who might ask stupid or simple questions just because they want to feel part of 'the family'. What is wrong with that? Posting questions or comments is the basis of this 'family' membership isnt it? Some of these people might be children, or people who have only just heard about the disease because they just found out that their friend has it. What is wrong with asking (and answering) silly questions? This sight is more than just a source of information, but also a place to seek comfort and support from those who understand mainly through personal experience what CF is all about. If they want to be part of this family we should welcome them with open arms, and not place a huge hurdle in their path (the hurdle of being forced to ask 'a good question'). We should accept people not for the questions they ask, but for the appreciation they share for the disease. And by acceptance, all I mean is a simple reply if you have time. This forum is used by what seems like hundreds of people around the world. Anyone can (and will) reply to simple questions. No one has a responsibility to reply, but it is assumed that someone will... and invariably someone actually does.
I don't think it is right to get annoyed at people because they ask silly questions. We need to be more supportive and less judgemental. In the majority of cases we actually have no idea who is making a post. It could be someone who is deeply moved by the disease and wants to make a difference. These people could be future physicians or medical geneticists (is that a word!?) helping to find a cure or treat us. Also, these people could just be 'lazy students looking for an A'. But... because we dont know their situation, we should not judge them by the questions they ask.


Rob 24 wcf

 

[Mockingbird]

Rob, didn't you read what I just wrote? And it's pretty obvious when someone comes on here without any interest. e.g. waiting until their paper is due the next day, only asking one or two generalized questions, not bothering to leave their name, not giving specific information on the project their working on, etc. And since you're being so high and mighty, maybe you'd like to point out where you've helped out these project people, 'cause I don't ever remember seeing anything from you.

Jarod
22 w/cf

 

[anonymous]

Rob, because these people always start their posts with, "help, I am doing an PROJECT/PAPER for SCHOOL and I NEED TO KNOW....." You would never see myself, or anyone else on this site turn someone away who comes on and says, "my friend just got diagnosed with CF as an adult, I have been told it is a genetic disease, can you explain to me how...." that is ENTIRELY DIFFERENT!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

And I must agree that I have never seen you reply to any of these school questions so until you do I don't believe you have any grounds to run your mouth.


Julie (wife to Mark 24 w/CF)

 

[anonymous]

Rob, I agree with you, these harsh critics don't have to reply, let others do it if they can be bothered. There is no need for rudeness, it tells us more about their life than I'm sure they are aware of. Not all of us share their views, they should just ignore the questions if they don't want to be helpful.

 

[anonymous]

Im sorry, but I disagree with Rob and the last poster. I never see you helping out a project person. If you are so willing to help them then why don't you just give them all your information whenever they ask..

 

[anonymous]

I HAVE!!!!!!!!!!!!!1

 

[Mockingbird]

<blockquote>Quote<br><hr><i>Originally posted by: <b>Anonymous</b></i><br>I HAVE!!!!!!!!!!!!!1<hr></blockquote>

You have a pretty big mouth for someone who doesn't even leave their name. If you're such a saint, then prove it.

 

[roblake29]

My goodness, I am really quite stunned by the extent of people's rudeness on this sight. I agree I do not post many messages on here, but I really enjoy reading and listening to what others have to say. When I first became aware of this sight and joined up a few months back, I was pleased at the general positiveness that I felt in all of the posts. It was clear that most people were aware of the bigger picture... People were willing to help, and if they couldnt answer questions, they wouldnt leave horrible messages... they would I presume just simply ignore them. But it seems as though over the last few weeks some of us have become a little irritated (or very irritated!) by the few posts about people doing school projects. What good does it serve anyone to be rude to people. You just lower yourself to the idiots who write these silly messages in the first place!!

I agree that I have not answered any of these school projects questions, simply because, like the rest of you, I feel that the questions were not pertinent or just not worth replying to (I implied in my last post that it was obvious to see people who dont actually care about CF compared to those who do). I dont think there is anything wrong with this. I am not being 'high and mighty' when I state my case. I am just trying to get my head round it without letting my irrational emotions dictate my responses to people. Can we please take a step back and see where this has taken us? Over the last few weeks, the standard of forum messages has declined to the point of complete rudeness. And yes Jarod, I did read your last post and very much agree with you. Thank you... but is there any need for the sarcasm mate (both times)?!?!

Please, I don't want to start a fight and name dropping people and the things they say, but just look back through a few of these posts to see what I mean. Is there a need for all this aggravation? Can we all just relax and see what really matters in this forum (in my opinion)... a lively, vibrant but ultimately positive forum for debate and discussion... not a place where we all just bitch about each other. If I want that I'll just go join one of those arbitary and impersonal Yahoo forums!! Let's remember, we are all on the same side... the side battling CF.

Rob 24 wcf

 

[julie]

Rob I read your post and I understand a bit more of where you are coming from. I apologize for my 'tone' in the last post to you. I didn't understand why you were sticking up for them but I have never seen you answer their questions.

I still feel the need explain and emphasize this one thing to you and maybe you will understand the frustration posts over the last week or so. We did indeed ignore one of the posters who was asking questions like "can you die from CF" (where there was already a topic 2 lines before it named the exact same thing with answers) and "I am doing a school project, help me!!!" and then you go in there to see the question and-nothing. Then this person started like 4+ threads on EVERY Forum (adults, families, teens, young adults...) which the administrators subsequently deleted. In the process of us ignoring this person or responding to their posts by stating "what is the question you need answered" and "please post your question and stop creating 4 separate topics of the same thing" the started spamming the board and then started insulting us when we told them to stop spamming the site and to ask a question after they post a topic, and to also make sure they do some research then come back for specifics. At that point, I as well as many others (it appears) had enough of their rudeness and spamming and felt the need to say something. It didn't start as rude but I will admit it did end rude and on this particular occasion I am not ashamed of that. I don't know if that makes you understand this particular case any more and maybe you can now see why it was so frustrating on this particular occasion.

I usually just tell these posters to go do some research because the question they posted can be answere by googling CF (I know because that is how I learned some stuff about CF) and then if that raises more specific questions, to come back and post them-or email me and I will answer them. There are a lot of questions that can't be answered just by online searching, you need personal information and I don't mind providing some of that if I can (being that I am not the one with CF) but I do like to tell them to do some research, come back and then I will answer them.

I hope this makes more sense to you as to why there was such hostility. It is not an excuse but hope it makes more clear...

Take care,

Julie (wife to Mark 24 w/CF)

 

[Mockingbird]

Hey Rob. =-) Sometimes I can get quite nasty, but don't take it personally. I get in one of my devlish moods and I start spitting poison at anyone who gets in my line of fire. Don't let the negativity and such on this board get you down; it comes and goes sometimes, but we always pull together when it really counts.

Besides, sometimes stressing and spewing negativity over something as stupid as an idiot project person helps me deal with the bigger stuff. It's um... projection I think is the right word... or maybe it's transferring, I don't know it's been a long time since psychology class. Anyway, sorry if I got out of hand and such; when I do it again, don't take me too seriously. =-) Actually, if you'd like to slap me around a bit, don't be afraid to do that, either. =-) I won't take it personally, so don't worry about that. =-)

Jarod
22 w/cf

 

[Emily65Roses]

Just FYI, I think the right word is displacement. That's where you're angry about one thing, and take it out on something else like the cat, or on the forum, etc. Projection is like if you and get bad grades... you think something like "well that teacher just doesn't like me." In other words, you take your bad problem with that teacher and make it their fault instead of your own. The teacher doesn't like you instead of "hey maybe I need to study harder." (I just finished a personality class in April).

 

[roblake29]

Hey thanks guys! You're awesome. I guess because I have been offline for the last couple weeks I did not see much of the commotion with regards the repeated posts about school projects. I just came back to find all this abuse flying about and I guess I may have got the tail end of it all... so apologies for that. Anyways, its good to feel a bit of love in this forum again! Speak soon!
Oh, by the way, Im doing a school project and...

Heheh! Love you guys!

Rob 24 wcf

 

[anonymous]

hahahaha


Julie

 

[Mockingbird]

Yeah, Emily, that's the word! For some reason I have trouble remembering that word. That and the word.... um..... Okay, well it's Charles Dickens' style of writing. Crap, why can I never remember that word? I wish I could, because it's my style of writing, too, and it would make explaining myself so much easier... i need to just get a peice of paper with all the words I tend to forget and keep it with me always. Soooo frustrating. Anyway, thank you for clearing my brain fog... I'll probably be coming back here in about an hour just to remember the word displacement, again (sigh).