An ADULT only CF FORUM

[thelizardqueen]

Like you've said before anon - you're here to get info to help your partner, and like you've also said - every CF person is different. Some don't get how others feel, and don't get their daily problems. You should be talking to your partner about her problems as well. Only she can tell you what its like day to day for her. Only she can truly make you understand what's going on with her life. You need to sit down and talk to her about it, or at the very least counseling may be of benefit to the both of you, even if she goes to counseling on her own to open up to someone about CF. Its not healthy to bottle up all of our CF problems. That's why a lot of us have depression.

 

[anonymous]

It's not that we haven't discussed it, or that she bottles it up, she simply tries not to think about it. If thinking about it makes her unhappier, why would I want to press her for every little detail I can possibly imagine? Sometimes people aren't good at putting their feelings into words, and if CF people "get" each other, then maybe someone on here will say something that applies to her and will grant me some more insight into it.

 

[anonymous]

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

The longer this thread gets the more I think it would be a good idea if we had our own place. <img src="i/expressions/face-icon-small-happy.gif" border="0"> I think a lot of you are practically making enders point for him.



q]



Exactly. And to the guy with the partner that has CF that is consumed with an afterlife, and firmly believes there is nothing afterwards, why would you want to continue reading about it if you already have your belief structure in place. That seems almost masochistic. If you already passionately believe one way, and that there is no other way (afterlife), why would you care to share opinions regarding that subject? The basis for sharing opinions on anything is to take others viewpoints into consideration and to weigh their merits and possibly consider them as valid or not.


But back to the original point. Liz and Littdebbie made good points. If you have something that makes sense on a logical level, just get 50 people with a similar shared interest and a topic and hand them a keyboard. Over a period of time, more than likely the point will be illustrated. People seem to think that adding another forum for CF's will take away something from this forum. I just don't see it.

 

[anonymous]

Simply put you are delusional if you think NOTHING is taken away from the forum for those that aren't allowed to see a newly construcated private forum. As a whole, nothing is taken away. For some, they wouldn't care. But for others, something is taken away. If, in fact, nothing at all is taken away, then it's nonsensical to even propose creating such a forum in the first place.

Now the first part of your post makes as little sense as the whole thing. Yes, I believe in no afterlife. I didn't think it was required to believe that to visit the CF forum. I didn't think there even had to be a debate about it here. It was to illustrate how important the issue is to me. Why wouldn't it be? I'm sorry for caring so much about my partner. Clearly I am masochistic for caring about the person I love and caring about both our lives. I don't want to make her depressed and stressed, and I figure those with moderate to severe CF might be able to shed some deeper feelings about lifespan, such as how often they think about it, how much it affects them, what gives them hope, etc. This isn't a religious debate forum, I am sorry to disappoint you.

 

[thelizardqueen]

You've also got to realize that there are "older" CFers who have "mild" CF as well. Just because you have CF and you're older, doesn't necessarily mean that you've got it worse. Some CFers in their 30s and 40s, and even 50s weren't diagnosed till they were in their 20s. So some "older" CFers do not know what your partner is going through.

ANd I honestly think this isn't the topic at hand. Ender asked how people felt about starting a seperate section, not whether we believe in the afterlife, etc. If there is a CFer only section to this forum, great. Us CFers will post there, and we'll also post in this section here. I don't think you're losing anything here. Again, if anything your partner should have more info for you, because no one can tell you how long your partner will live, or what it will be like, because she's different then others, but I know that she doesn't like talking about it, so your only solution is here, and that's fine - we have a wealth of info for you, but give some of us CFers a break, some of us would like to have a seperate section, some of us not. At this point I think whether we have a section or not, has nothing to do with the non CFers not liking it, but maybe majority vote of the CFers who would want one? Just my thought though.

 

[julie]

LIz, I gotta disagree with your comment about how when someone dying affects the dead person more. Maybe it's because I'm going to be the one left behind, but for the first time in his life, my husband will be in peace. Will breath without problems and go to heaven (what we personally believe in). I on the other hand, will STILL have my life, which yes, I am grateful for. But it's also going to be very difficult to go on with my life without my lover and partner by my side. I think death MUCH MORE affects those left behind than those who pass. Just my opinion though. I can see what you are saying.

Bill, this is the reason why I stated in my post that if CFers want a "cfer's only" site simply because they can't handle criticism from non CFers, is such a bad idea. In my opinion this is reason is so immature and so fake. It isn't how the world works, and this site is about real life, not fantasies. Here's what I'm referring to <div class="FTQUOTE"><begin quote>Seana, I do not have any problems with you. but this topic brought that to mind, especially when you piped up telling Kiel he was making trouble. It's not ment for you to take offence, <b>it's just a good example of why a forum for cfer's could be a good thing.</b> </end quote></div> What's a good example, because she disagrees and thinks he might be trying to cause trouble? And just because she doesn't have CF he shouldn't have to hear that from her. But if you do have CF it's ok to say it. To me, that is absolutely pathetic.
For a moment I was inclined to think the same thing, because I only see ender around when there are heated topics going on, or discussions about heated topics. But it is a relevant question, regardless of his motives to post it.

Some have mentioned that some of these posts have already made ender's point. That you as a CFer are censoring your posts because you are concerned about how they will be viewed. Although it is sad that has to happen, it doesn't just happen to the CFers on this site. Many parents, lovers, friends... censor their posts too because we are reminded often that we don't have CF, we don't know what it's like and we have no business.
I think you guys are just fooling yourselves into thinking that if you have another site that's just for those with CF, things will be so much better. You will get criticized there too. You will have to censor your posts there too. We always want what we can't/don't have and the grass always looks greener on the other side.

<div class="FTQUOTE"><begin quote>I just don't think public forums are a place to segregate.</end quote></div>
<div class="FTQUOTE"><begin quote>What about the Well Spouse site? That's a public forum, but only people who are "well" can join up and chat.</end quote></div>

I have to agree with anon. But I would say I don't believe that THIS forum is a place to segregate. This is a community forum, about community, not segregation. WE ALL have something in common, CF. There are differences in what we understand because of who we are and our relationship to CF, but we share a common ground.
As far as the well spouse site... For those of you who want a forum for CFers only, why not create it? There are all these discussions going on back and fourth about it on here, so for those of you who are in favor, why not take some action. I personally don't believe it will happen on here because I think it will completely demolish exactly what the creators of the forum have strived so hard to create. And I hope it won't because I just don't see the participation happening anymore, it will be a bunch of us without CF and while it's nice for us to chat with eachother too, because there are many things that those of you with CF will never understand about our struggles, we will loose out on all that those of you with CF do share with us!

 

[Emily65Roses]

Ender deary, I would make a list of CFers you want to share with. Like the others have said, make a private topic and list only those of us fellow sickies you want to share with. That may be one of the best solutions you'll find. *shrug*

 

[thelizardqueen]

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

LIz, I gotta disagree with your comment about how when someone dying affects the dead person more. Maybe it's because I'm going to be the one left behind, but for the first time in his life, my husband will be in peace. Will breath without problems and go to heaven (what we personally believe in). I on the other hand, will STILL have my life, which yes, I am grateful for. But it's also going to be very difficult to go on with my life without my lover and partner by my side. I think death MUCH MORE affects those left behind than those who pass. Just my opinion though. I can see what you are saying.</end quote></div>

While I can see your point Julie, I also want to reiterate what I said in a previous post on here: We as CFers, can never understand what our spouses are going through, whether it comes to having them take care of us, or them still being here when we're gone. At the same time though, spouses or parents, will never understand the fear that we go through knowing that we're going to die, and leaving our partner behind. It tears me apart to know that I will leave Cory behind, that he's gone through so much with me, only to leave him behind. When it comes to both sides, non of us will ever truly understand what the other person goes through. I will never know what its like to take care and lose a partner to a terminal illness, and you will never know what its like to have a terminal illness and leave your partner behind.

 

[IG]

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

While I can see your point Julie, I also want to reiterate what I said in a previous post on here: We as CFers, can never understand what our spouses are going through, whether it comes to having them take care of us, or them still being here when we're gone. At the same time though, spouses or parents, will never understand the fear that we go through knowing that we're going to die, and leaving our partner behind. It tears me apart to know that I will leave Cory behind, that he's gone through so much with me, only to leave him behind. When it comes to both sides, non of us will ever truly understand what the other person goes through. I will never know what its like to take care and lose a partner to a terminal illness, and you will never know what its like to have a terminal illness and leave your partner behind.</end quote></div>

I hate to deviate from the topic but what about those of us who are in relationships with CFers? While having CF ourselves. While rare it does happen. I guess maybe that's why these threads drive me crazy because quite honestly you're both right. Both sides have no freaking clue what's going on with the other but we can emphasize. I personally never knew how frightening this disease was until I met my boyfriend. Despite the fact I have it. I can deal with death for myself, but having the possibilty of that happening to him, is terrifying. The fact that I could lose the best thing that has ever happened to me... and the fact that I could take a turn for the worse myself and leave him.

I think the point of this is while we cannot understand what the other is going through until we get to that point ourselves we have much to provide one another on this site. Alot of it is support, sharing of ideas and information, but a lot of it is emotional too. Coming here as a CFer I have the ability to share my input, my thoughts, and my experiences when dealing with this disease, but as the partner of somebody with CF I can relate to those mothers, fathers, sisters, and brothers of those with CF. I think this is an invaluable site to many many people, those with CF and those without since we can provide a few into each others world and share that with one another.

Also ender, I believe in what the others have said, if a CF only forum was to be made perhaps you should go ahead and make it. That or, like others have also suggested, make private posts to those with CF only.

 

[anonymous]

thelizardqueen, in that case, why even have people come to forums to share feelings at all? Maybe we should all just discuss information. Hearing how other people feel, what they think about, their hopes, fears, etc, is also a coping mechanism for me. Not everyone with CF feels the same about things, so why communicate with each other at all besides to exchange information? Deep down it's also a coping mechanism. It makes me feel somewhat more at ease that other people have all these concerns, and then to see those same people live even longer. I don't need to hear it from people like me, because then I'd think "well, thanks for reinforcing exactly what I was already thinking". People mentioned the discussion of death as something that could be in the private CF forum. That would be the biggest loss for me on this forum.

What other topics would get discussed? Can people be specific here? Why is a stranger with CF somehow more acceptable than a stranger without CF? What if they aren't even a good person? I knew a teenage guy with CF, he laughed about it, he thought life was meaningless, and didn't really care about his lifespan at all. He was an arrogant and generally nasty person. Why would someone like him get access but then others like us not allowed to even view it? Take away the ability to reply if people are truly afraid of criticism. I think anyone that comes to this site isn't coming to critisize people with it, and that most of the criticism is between CF people. Let me invoke a recent topic, the one with the new Michael guy, saying those with more mild CF should stop complaining so much. That had a lot of controversy and drama/criticism in it. You can't stop the criticism, and many of us want to see topics like death discussed in here, so what would be on those private forums?

 

[anonymous]

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

Simply put you are delusional if you think NOTHING is taken away from the forum for those that aren't allowed to see a newly construcated private forum. As a whole, nothing is taken away. For some, they wouldn't care. But for others, something is taken away. If, in fact, nothing at all is taken away, then it's nonsensical to even propose creating such a forum in the first place.



Now the first part of your post makes as little sense as the whole thing. Yes, I believe in no afterlife. I didn't think it was required to believe that to visit the CF forum. I didn't think there even had to be a debate about it here. It was to illustrate how important the issue is to me. Why wouldn't it be? I'm sorry for caring so much about my partner. Clearly I am masochistic for caring about the person I love and caring about both our lives. I don't want to make her depressed and stressed, and I figure those with moderate to severe CF might be able to shed some deeper feelings about lifespan, such as how often they think about it, how much it affects them, what gives them hope, etc. This isn't a religious debate forum, I am sorry to disappoint you.</end quote></div>


No, not what I meant. From your earlier post I thought you were saying that you had already made up your mind about the afterlife, but wanted to hear what everyone else thought about it, and you were obsessed about it (I believe you said obsessed). I was just wondering why if you 100% believed in one thing, you wanted to hear other opinions on the matter. As far as lifespan goes, as i'm sure you know, it's a total crapshoot. So many different mutations to start off with, then time of diagnoses, early care, adherance to care, being proactive, nutrition, supplements, being active and viewing exercise as extremely important and not being a couch potato. Tons of things add to the equation, and there is still no direct perfect combination that guarantees we will all live to be 50. Just do what you should and have fun while doing it and let the cards fall where they will. Nothing more you can do about it. Obsessing about lifespan or the afterlife will just drive you crazy.


By the way to play devils advocate and to be fair, I think looking at things from the other side of the coin always helps perspective when given a discussion like this. If I was married to someone with say Parkinsons disease (anything debilitating and chronic/terminal), I would find a site like this and in particular this area a wealth of information. But I would also fully understand his/her desire to want to have their own little area that was theirs. If I really wanted to know something, i'd just ask her/him. And in turn, if they wanted to share something with me, they would tell me. I have never been in a relationship that was anything less than that. Communication is the key. If anyone seriously needs an internet forum to try and get a grasp on their mates mental well being by proxy, that just doesn't seem too healthy to me.


Also, there seems to be a very strong element of textual voyeurism taking place here within this argument. I can't see why anyone would be that overly interested in what a particular special group of people have to say to each other when they have stated it's just talk amongst themselves, about being themselves, in their special situation. As I said before, hypothetically speaking, I would fully understand my mates desire to want this as well if they were in a similar situation health wise.

 

[beyerdug]

I want a forum just for cfers that are 41 and male named Doug. They need to be a Gemini born in June. These people need to have a sister with cf who died 32 years ago at the age of 12 and another sister who wanted to have cf when she was young so she could have some attention from it. The people have to have never been treated for cf until they were 40 and only after smoking for 18 year then quitting 3 years before getting sick. They have to have parents that are divorced. They have to live in Texas and have 2 children and a wife named Rachel. These people that are included in my forum also have to be in nursing school. Oh, and SeanDavis is allowed in too to add some good humor. Where is Sean anyway? I sure do miss him so if you are reading, please post and make this thread a little more interesting. The rest of you who don't make the cut can read and support me but I don't want you to criticize me because you don't know what I am going through and are not worthy.

 

[anonymous]

They call those blogs. I thought SD was the king of sarcasm?

 

[beyerdug]

I'm filling a void.

 

[julie]

Liz, I know what you are saying. I too said the same thing in an earlier post... I think each side of this discussion makes a valid point, and I don't think we'll ever all agree on it. Such is life. At least the discussion has remained civil <img src="i/expressions/face-icon-small-smile.gif" border="0">

Cute doug. You make me laugh <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Allie]

I don't want a separate forum for Cfers. Selfish, I guess. The closest friends I've made, those I love dearest on here, CFers. I never would have met them if I would have just looked for young widows of CF. I like the broad spectrum. In a lot of ways, I agree with letting Cfers run this place, and if you can't take the heat (Death talk, whining about the unfairness, etc) get out of the kitchen.

But I think that it would be a shame if we all went to our separate corners, we are so different anyhow, what's wrong with that? I hope that the friends I have made here with Cf have gained something from our friendship, even though I don't have CF, and so can't really grasp where they are coming from. I know I have helped Cfers with relationships, dealing with their SO's, telling them some of our perspective. I don't want the kalidescope of opinions to leave this place. Is this place always perfect? No, it isn't. But I love it for what it is, and don't want to see it change.

And as far as criticism, there's a lot of Cfer on Cfer crime.

just my spin...

 

[Ender]

Having a seperate forum is not going to be the end of this one. Hell probably on one will ever post in it, I don't know. However, I think as a cfer, and a member of this site, it is a valid question...

There are circumstances where is it valid. Someone else brought it up. Younger family members scared to come on because of relatives who view this site. Would i post half the stuff that i post if i knew my mom or grandmother came here? What if i was a teenager, that had a serious question about smoking...and was afraid to ask it because they knew their parents came here and would give them hell. It happens. I just think there are cirumstances where it would be nice to just be able to talk to cfer's about cf things without outside input....because sometimes they just don't get it.

And about the people saying that mild cfers just don't get serious cfers. You would have to have cf to realize that no matter where you are in the disease, there is a bond. These are the ONLY people in the world that know what you are going through. They aren't the only people that suffer, but you just have this innate understanding of eachother, and it's kinda amazing.

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.

Whatever. I have cf. I'm here, and it would be cool to have a cf forum. Simple as that.

Kiel

 

[Mockingbird]

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

Whatever. I have cf. I'm here, and it would be cool to have a cf forum. Simple as that.</end quote></div>

What happened to the creating one yourself idea? The administrators are already working their butts off as it is without having to police yet another board. You want it, so you go make it happen. simple as that.

<b>edit</b>: either that, or you could use the private topic option. that's probably why it was created in the first place.

 

[anonymous]

So you're saying every CF patient knows what each other is going through, and understand each other more than someone with cancer and near death compared to someone with CF and near death. This despite the fact many CFers have never met CFers in person, will never meet them, and have never even been apart of a CF community at all. Yet they have a mystical understanding of CFers, regardless of severity. I think that's needless classification. "I have CF, thus I know what all CFers go through, and they know what I go through." I need only find one person to disagree with it. I asked my partner just a while ago about what she felt about other CFers, if she understood them, or if she felt any bond with them. She laughed and said she only ever met two young CFers as a kid, and doesn't know anything about "bonding" between CFers and felt those later in life that don't get hospitalized often and don't have really lower numbers wouldn't understand her completely and that they have it lucky. I told her I browsed a CF site, but never registered (she doesn't know you can post anonymously), and asked her what she thought about the idea of a section for people with CF only. And I quote "I just don't see any reason to exclude others". I guess this intelligent woman with CF herself disagrees, how could this be? Bonds are created by individuals, not merely some stranger sharing a common trait with you. Relate, yes, but a condition itself doesn't create a bond.

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. I don't want to argue about race but I don't like it when people voluntarily segregate themselves based on things like that. We should be around people based on who they are, not what they are.

It's not just CFers that worry about being found on the forums. My partner doesn't even tell people she has CF unless she has to. She wishes I wouldn't read all into CF, says it makes me feel worse than I need to, but I do it anyway. That's the reason I post anonymously, in case she ever joined the community, though I highly doubt she ever would. I think it would make her cry if she ever knew just how much I worry about it, and I don't want to cause that. Ender, to be honest, I don't think you are supporting yourself very well with examples. You said "Was just thinking of a place where ONLY CF patients, *particularly* adults ", and "And i wouldn't want to make the adult section cf only, but to have another adult cf forum created." but your strongest explicit support is for non-adults. Well, just make a private teenage forum then. I think the real issue at hand here is self segregation, just like in high school, due to common traits, because otherwise I honestly haven't seen very good reasons for it, except perhaps for younger people being monitored by elders. Can people please tell me what about CF that you don't want to share with non-CFers? It's not like I'm not already exposed to it everyday.

 

[Seana30]

Bill,

You have proven my point!

Who said I took offense to what you said?!?!?!?!?!? You have mentioned me in a few of your posts (well, not mentioned me, more like made fun of the way I feel about things) so I stated to you that you should talk to me directly. I DID NOT TAKE OFFENSE. I ACTED LIKE AN ADULT AND SAID YOU SHOULD SPEAK TO ME DIRECTLY IF YOU HAD A PROBLEM WITH ME.

I find it funny that the relatives of CFers seem to not be able to say anything without you all thinking we are upset!!

I have discussed many issues here, including death, life expectancy, and other "touchy" subjects pertaining to CF without going "OH LORD.......I DON'T WANT TO THINK OR HEAR ABOUT THIS!" My daughter is also allowed to come to this site because I don't hide anything from her.

Seana