An ADULT only CF FORUM

[Ender]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>

As humans, that same bond should be shared with anyone that shares a defect or hardship that hurts their life. Why shouldn't it? Why is someone with another terminal illness so fundamentally different than someone with CF? Because you have to do different things or have different symptoms? Obviously there will be more things in common with CF patients in terms of symptoms, but I don't see why people define their very personality by it, as if it consumes and dominates who they are. It's that kind of mentality that separates people. The mentality that creates racial communities.</end quote></div>

Honestly. I don't define my life by it, it's just kinda there, and i can't forget about it. There's a difference.

Secondly, I'm sure all people that have hardships have a bit more compassion for others that have troubles, but do you think someone with cancer has any idea what a cfer really goes through. Hell why not we all just create one supergroup of people with disabilities, cause we're all going through the same thing.

You said that your wife didn't really think about others with cf....but do you think if she ran into an adult now, you don't think she would think of that person more than another stranger? I still remember some of the kids from my clinic and wonder what they are doing now, if most of them are alive.

Maybe it is a good idea, maybe it's not. I thought it was a valid idea, and was interested in seeing what was out there. If it was a possibility...if people were interested and if it made sense.

I think it did.

 

[anonymous]

I didn't say you have to make a supergroup. But you do the same thing with CF to an extent. Some people clearly have it much worse than others with the disease, whether both will progress more or not. Someone that's past 40 with mild CF isn't like a young person with severe CF. They are more different from each other than someone dying from cancer at an early age is from the severe CFer. Sure symptoms are similar, but lifespans won't be, experiences in the hospital won't be. If you have to be in the hospital for two weeks at a time several times a year, it's different than going in once every couple years, by a long shot.

I'd also like to clarify my partner isn't my wife, just my girlfriend for now, though we plan to get married when the time is right. I just like the word "partner" more than girlfriend. Sounds less adolescent. She did know two CFers. One of them is dead now. She didn't mourn them or think much of it, they were just a stranger to her. She is the type of person that wants to feel more normal, and not become "one of this kind". She doesn't like to consider herself defective or diseased. She is herself, and CF is something she has, not part of her self-identity. She may relate to someone with CF more than a complete stranger, but wouldn't segregate herself based on that. She'd relate to someone that draws more than someone that doesn't, but wouldn't exclude those that can't draw (like me) from learning about drawing. Rather she would segregate based on personality, values, ethics, intelligence, real bonding, etc, the way it should be. She would probably be more critical toward CFers than I ever could be, would say some CFers "wah" too much, probably the reason she says she'll never post on a CF forum. But she could come visit the forum and not me, if that's how it was? Neither of us see why.

 

[julie]

<div class="FTQUOTE"><begin quote>Julie, i just don't get you. You come here trying to be critical and giving your two cents while you insult me at the same time. Tell me your basis of me only giving my input on heated topics. I do it cause it's funny, but i also post legitamate questions and answers. Who are you to judge? Who are you to care? Do you own this site, do you own me? I read almost every post, and because maybe i don't have the time and energy to respond to all of them, doesn't make my opinion any less valid. </end quote></div>

You seem to be the only one who thought what I posted was critical and insulting to you. I'm allowed my own opinion, even if it differs from yours. Same goes for you being entitled to yours even if I, or others disagree.

My basis for sharing my opinion that you seem to only PARTICIPATE on this forum during heated topics... Um, because that's when I see you post 95% of the time- Aside from the stuff about the OO which was almost a few months back by now... aside from those OO topics and all the heated ones, and this one, I don't see you post anywhere else. Offering support to someone else, helping to educate, answering questions. If I were to query your user name, I'm pretty darn sure it would come up with mostly the heated topics. I understand that you post on them because it's funny. That's your and Seans problem (in my opinion) on this board. Trying to be funny all the time even when the situation doesn't warrant it. This is the first time I (personally) recall on this forum that I have really seen a serious post from you aside from the OO stuff. And I think it was a legitimate question, even if I disagree with it.

You and a few other seem to get the word judgement mixed up with opinion on this forum a lot. I'm entitled to my opinion, and I'm entitled to share it on a public forum. If I'm being rude, attacking, tearing someone apart or other inappropriate behavior then someone needs to step in and report it and call me on it; as should be done in any case of this behavior (in MY opinion). But I don't think any of my posts in this thread have been rude, attacking or tearing anyone apart. Just because you disagree with me, doesn't mean I am judging you.

Who am I to care? Someone who genuinely cares about this site and a majority of the people on it- just being honest here. Someone who does assist others despite what some of you think. Someone who learns from and is inspired by others on this forum. That's who I am on here and why I care. You asked for an opinion, if you can't handle the responses then don't ask them Ender.

No I don't own this site and I sure as heck don't own you. But again, I'm entitled to my opinion and I'm entitled to share it.

 

[Ender]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>julie</b></i>



Just because you disagree with me, doesn't mean I am judging you.

</end quote></div>

But you are judging me. You judged me when you "voiced" your opinion (not judge) that I only post in heated threads. If you didn't judge me, you could have just given your insight to the post while leading that comment out. You were trying to portray to people the idea that i have nothing worth while to say.

I'm not stupid. It's not that i couldn't handle a response, i was just scared of one.

Kiel

 

[Ender]

Bleh to my above post, I don't know what it is about this site that makes me so defensive. I'm not at all a confrontational person in real life...i get along with everyone. However i feel myself get really irritated sometimes on this board, at people, and the mindless squabbles we have. What is it about this site that does this. This is more like the "Come here to bitch" site as it is a cf site.

I've just never seen anything like it. Especially on a public forum available to everyone. It's really quite funny.

Can't we just act like adults. It was a question...it's not gonna change your worlds and the sun and the moon. The tides aren't going to stop because there is a seperate forum.

I like people. They make life interesting.

 

[anonymous]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Ender</b></i>

Bleh to my above post, I don't know what it is about this site that makes me so defensive. I'm not at all a confrontational person in real life...i get along with everyone. However i feel myself get really irritated sometimes on this board, at people, and the mindless squabbles we have. What is it about this site that does this. This is more like the "Come here to bitch" site as it is a cf site.



I've just never seen anything like it. Especially on a public forum available to everyone. It's really quite funny.



Can't we just act like adults. It was a question...it's not gonna change your worlds and the sun and the moon. The tides aren't going to stop because there is a seperate forum.



I like people. They make life interesting.</end quote></div>

You like people, but you want to segregate them? Cool...

Anyway, you've been asked numerous times now...
CREATE YOUE OWN PRIVATE FORUM if you want to...its not difficult. Send out invites to people you know have cf, and then off you go.

Why is it so difficult for you to get off your butt and do this instead of just whining?

 

[Ender]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Ender</b></i>



Bleh to my above post, I don't know what it is about this site that makes me so defensive. I'm not at all a confrontational person in real life...i get along with everyone. However i feel myself get really irritated sometimes on this board, at people, and the mindless squabbles we have. What is it about this site that does this. This is more like the "Come here to bitch" site as it is a cf site.







I've just never seen anything like it. Especially on a public forum available to everyone. It's really quite funny.







Can't we just act like adults. It was a question...it's not gonna change your worlds and the sun and the moon. The tides aren't going to stop because there is a seperate forum.







I like people. They make life interesting.</end quote></div>



You like people, but you want to segregate them? Cool...



Anyway, you've been asked numerous times now...

CREATE YOUE OWN PRIVATE FORUM if you want to...its not difficult. Send out invites to people you know have cf, and then off you go.



Why is it so difficult for you to get off your butt and do this instead of just whining?</end quote></div>

I wanted it on this forum cause I like this site. I thought it would be cool. I also wouldn't want to leave with anyone, i wanna stay here, with the option of posting in a cf adult forum if i wanted to.

You know what, this site really isn't worth the stress. I'm taking some time off of it. I'll see you guys in a month or so.

Take it easy.
Kiel

 

[kayleesgrandma]

I think everybody should just get a bunch of saline water balloons and have it out!!! Why is everyone getting so defensive? It would not be the end of the world if the cfrs had a site of their own. They all still care about us and will come back and forth. Some of the replys here are getting so personal that it makes Kiel's point. I came here because the real world can not tell me what its like to have cf. I feel part of a "select" group already. I don't want to talk to others that have no clue what cf is about. So why can't cfrs have a place? There have been some terrific and valid points for either point of view, and I think this thread has no end in sight....

 

[LisaV]

Kiel, So sorry you feel beaten up for asking a question - expressing a need. i guess I don't understand community if just asking if anyone else would like to have private CF-eronly conversations sometimes gets you in trouble. How do we have a healthy community if we don't allow people to set and have their own boundaries?

Well... if anyone does create a special CFer-only forum or private roup would they please post information about how cfers can join it?

Thanks,
-LisaV
P.S. I would like to point out that we have very few multiple members from a single family on this board. There are a few. (Emily65Roses and her mom come to mind immediately.) But in most cases if a nonCFer is active on this site, their CFer is not. I am sure there are lots of reasons, but one might well be the privacy issue and havinig a separate CF only forum would address that privacy issue. Since CFers have to use forums to communicate - since they cannot hangout together in the real 3d world, I would like to see us, as a community, do absolutely everything we can to offer all CFers (even the most private) a safe place to receive support.

 

[Jane]

<div class="FTQUOTE"><begin quote><i>

Since CFers have to use forums to communicate - since they cannot hangout together in the real 3d world, I would like to see us, as a community, do absolutely everything we can to offer all CFers (even the most private) a safe place to receive support.</end quote></div>

Once again Lisa V offers a wise, level-headed and compassionate response to all this madness.

You're a gem!

 

[anonymous]

well, seanna 30 , pardon me for trying hard not to upset people with cf when we need the answers to very "touchy" questions. we are all fighting battles with regards to cf. as a parent of a young boy with cf i feel the need to know "everything " but i have a very strong aversion against upsetting people and try hard to ask questions with tact and sensitivety . and it still isn't good enough!!!!!!!!!! janet uk.

 

[kayleesgrandma]

Thank you Lisa, I'm so upset that people make personal issues out of everything here. It's like--would they say the things they do to a persons face? Do they think that they can say anything as long as they don't have to look a person in the eye? There seems to be a slash and burn mentality here. Right now I'm not happy with this site either. Keil's thread started out pretty reaonable, then it got personal, then it became a frothing at the mouth issue. If it weren't for the more rational members responding I too would take a break--not that I am a contributing member like most of the rest of you. I'm kind of a "floater" here--absorbing your knowledge and prepareing myself for what's to come. I'm just in shock and awe over what happened on this thread<img src="i/expressions/face-icon-small-disgusted.gif" border="0">

 

[Ratatosk]

I haven't read all the posts on here, but I will say that when I first started lurking on this site, I avoided the adult area, because I assumed it was pretty much for adults wcf and those issues; however, a number of times there were questions on the family site and the people who were asking and answering them were newbies -- parents of newly diagnosed babies like myself. Questions about medications, symptoms, side effects, equipment maintenance.... I once asked a question about cepacia and got a response from a new parent who said "my doctor said young children can't get cepacia". Sent chills down my spine.

There are posts that I avoid, don't read or post on if the topic is something that doesn't really pertain to our situation. If I don't feel I have anything to offer to the conversation, I don't post on it. Some people (I think of my mother), feel the need to post on every single topic. Liza

 

[Lilith]

*stares at screen, then bashes head against desk* Ender, just start a private topic. That way you can only chat with those you invite. I have a feeling if you start your own forum, non-CFers that flamed you here will follow... Better to eliminate that possiblity if that's what you really want.

 

[Seana30]

Janet,

I am not quite sure what it is you are saying to me??????

I agree with you. I am a parent of a CFer also!

As I stated in my last post I have no problem talking about "touchy" subjects!

Would you please post again and explain to me what it is you are trying to say.

Thanks!

Seana

 

[anonymous]

"You know what, this site really isn't worth the stress". Yup Kiel, I agree. This site is rife with hypocrisy. Granted it's only a couple of members, but it's so overpowering, I don't care about the site anymore and only check it occasionally from work. It's cool though, we all have free will and are adults and can move on. It is sad that there are a couple of people on here that are so delusional, they aren't even aware of the hypocrisy they spew not only in the same day in different threads, but oftentimes, from reply to reply in the same thread. It just annoys me it took me this long to realize it.

 

[anonymous]

i'm sorry seanna if i have misunderstood your post. " i find it funny that the relatives of cfers seem not to be able to say anything without you all thinking we are upset". to me it sounds like your point was , we who use forum as parents /spouses etc. seem to think we are upsetting "cfers" asking questions that are "touchy" . do you see? this is a prime example of getting "crossed wires" 'cos of the words being written, as opposed to in person with the benefit of body language and facial expresssions etc. i apologise to you seanna.<img src="i/expressions/face-icon-small-blush.gif" border="0"> janet uk.

 

[Seana30]

No problem janet!

It can be difficult to understand each others ideas and thoughts when we are reading them on a screen!

Seana

 

[julie]

I just don't understand how someon can jump to the conclusion that if they aren't getting the responses they like/want/agree with OR if someone mentions something about them (like I did and my observations of Enders posting habbits-which I made clear were MY OBSERVATIONS/OPINIONS) then they are being judged and everyone needs to cool down. I didn't say anything bad about Ender himself or make insulting comments.

Whenever you ask a question, it has the potential to be controversial to someone, somewhere. Especially when we are all dealing with something like CF. He had to have know that some would agree, some would disagree, some would be saddened by the thought of CFers wanting to leave to have their own CF only topic, some might be hurt/insulted/feel less important because they don't have CF.... but he had a right to ask it, and he did ask for opinions regarding his idea. Just because I, and others don't share his line of thinking doesn't mean I don't get to post about it. The whole topic has remained quite civil if you ask me, I don't understand what the problem is.

I think the question was a valid one, I think the idea was a good one if Ender and others feel the way they do. I, as well as others, also suggested WAYS to go about creating a separate forum on his own or a private topic here on this site. While I wouldn't like to see it happen, if you want it that bad and create it, so be it. End of story.

You ask for opinions on a very open ended subject about something potential controversial (controversial in the sense that it makes those of us without CF feel less important to this site) and then want to censor the answers because you disagree. Doesn't make sense to me.

 

[Seana30]

Julie,

I agree with alot of what you said.

I too feel the only time I see ender in a conversation is when it is a "heated" one. I rarely see him post about how he is feeling, what is going on in his life, giving advice to those that ask for it, etc. I personally feel he likes to start trouble, and then the ones that jump in with a different opinion are called the toublemakers!

That is why I first jumped to the conclusion that he was just trying to start a fight. If I am incorrect in that judgement I apoligize ender!

I had the same trouble on CF2CHAT! The relatives of CFers were made to feel like outsiders, and I don't understand why. We all have to deal with this disease, EVERYONE, CFers and relatives of CFer, deal with it in different ways.

I thought the whole purpose of a site like this was not to segragate, but come together and share ideas and feelings!!

Seana