An ADULT only CF FORUM

[anonymous]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Seana30</b></i>
I wish if you had a problem with me you would either talk to me directly or PM me or something.
Seana</end quote></div>

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, it's just a good example of why a forum for cfer's could be a good thing.
-Bill

 

[anonymous]

Ok I don't want to be offensive hereb, but people that die close to 60 with CF might not "get" what it's like to know you don't have a good chance to make it through your 20s. Not all CFers are the same. So why are people making the assumption they all "get" the same thing. Some people have to stay at the hospital many times per year, some only go once every few years. So why do the mild CFers think they "get" what it's like to be the severe CFers? I guess they don't. No way, never happening. Someone that loses their finger won't ever "get" what it's like to lose both their legs. It's just how it is. Creating black and white divides makes no sense at all.

I want to talk about CF lifespan. I think about it everyday. I've searched every little research article I could find on it and keep looking for more. My partner with CF NEVER likes to think about lifespan. Maybe it has to do with the fact we don't believe in an afterlife. When she dies, I'll be crushed and alone, and we both believe she will stop existing forever in any form. Thus her death is going to affect me more than it will affect her, so why would she ever want to talk about it? Why can't I read the candid feelings and opinions about death and lifespan? I'm practically obsessed with it. Because I don't "get" what it's like to have CF? Well maybe the severe CFers deserve their own forum, those mild CFers just won't "get" it, it's not an insult. Yet I think they would feel insulted.

 

[anonymous]

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

Ok I don't want to be offensive hereb, but people that die close to 60 with CF might not "get" what it's like to know you don't have a good chance to make it through your 20s. Not all CFers are the same. So why are people making the assumption they all "get" the same thing. Some people have to stay at the hospital many times per year, some only go once every few years. So why do the mild CFers think they "get" what it's like to be the severe CFers? I guess they don't. No way, never happening. Someone that loses their finger won't ever "get" what it's like to lose both their legs. It's just how it is. Creating black and white divides makes no sense at all.



I want to talk about CF lifespan. I think about it everyday. I've searched every little research article I could find on it and keep looking for more. My partner with CF NEVER likes to think about lifespan. Maybe it has to do with the fact we don't believe in an afterlife. When she dies, I'll be crushed and alone, and we both believe she will stop existing forever in any form. Thus her death is going to affect me more than it will affect her, so why would she ever want to talk about it? Why can't I read the candid feelings and opinions about death and lifespan? I'm practically obsessed with it. Because I don't "get" what it's like to have CF? Well maybe the severe CFers deserve their own forum, those mild CFers just won't "get" it, it's not an insult. Yet I think they would feel insulted.</end quote></div>

I can tell ya one thing, you sure dont get it

 

[thelizardqueen]

CF is progressive. While some of us are "mild" right now, we will progress to "moderate" and then "severe". So we do get it, or rather we will get it. So you can't compare mild to severe like you would getting your fingers cut off to getting your legs cut off. Because all of us CFers will get to that end stage. As well, I don't think it was stated once that we would stop the regular adult forum where a lot of us CFers contribute to for a "CFer only site". We would have both. One where CFers can go to, and another where spouses of CFers, or parents, family members, etc AND CFers can go to. I mean, spouses for terminally ill patients have their own website, where they deal only with their own issues, and no outsiders are allowed. Why can't we have the same where we don't want any "outsiders" in? We as CFers, can never imagine what our spouses go through, so they have their own site. Do CFers have their own site? No they don't. And the more I think about it, the more I think we should have one.

 

[LisaV]

Both the CF spouse and the nonCF spouse think about death and lifespan.

BUT as you point out they are thinking different things.

You and I (well spouses) think about loss and having to go on without them. About being strong enough to take care of our spoues when they are ill, etc. You and I and Allie and Karen and Julie and the other "well" spouses can talk about that on the Families section any time we want to (or on the forums wellspouse.org - CF isn't the only Dx that causes spouses to die "young").

The ill spouse thinks what? That they're afraid? That they're so tired that they almost look forward to it sometimes? That they're worried for us? That they're guilty that they'll leave us? That they're sick and tired of everyone looking at them like they're dying? That it makes them angry that they can't talk to anyone in their family about it because their family members say "don't say that. There are new treatments every day?" That people seem to see them more as their illness (as dying) than as a person?

All of the above? None of the above? Whatever they think, they might want to talk about it among themselves without our listening in - or having to even think for a moment about "our" view of their death. (Heck it's <i>their</i> death we're talking about here.) And, again, I think that is just fine.

Why do you want to listen in to every conversation your partner has? What seems dangerous or wrong about her having a private conversations?

 

[thelizardqueen]

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


When she dies, I'll be crushed and alone, and we both believe she will stop existing forever in any form. Thus her death is going to affect me more than it will affect her </end quote></div>


And I hate to say this, but her death will affect her a lot more then you. Yes, you will be alone and crushed, and yes it will hurt. BUT you will be alive and living, and eventually the pain will not be quite as bad. I'm not saying it will go away, but it will lessen. SHE however, will be gone and dead, and that affects her more then you living.

 

[littledebbie]

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. To be totally honest I will say that I don't think the parents/spouses/etc. Are actually getting the "deep, real" feelings here that you maybe think you are. I think people here are already censoring themsleves when they post, I know I am. It is just a fact that we have learned through life lessons that when we are in an arena with people who do not have CF and even more they CARE for someone with CF we have to be a little careful about what we say/share.<br><br>

I don't think it's a matter of not valuing parents/spouses etc. Some of the best information and support I have gotten has come from those very people. I would still come here. I don't think anyone has said they would stop coming here. Like someone said a lot of us don't work full time and are on the internet a lot, i don't think it would change this forum much. In fact I would guess that a CF only forum would not have much "information" happening at all. probably a lot of whining, but not for the sake of looking for someone to offer a solution <img src="i/expressions/face-icon-small-wink.gif" border="0"> but just to whine to someone who gets it...and as much as we love all of you...you don't/can't. Just like we don't know what it's like to be in your shoes.<br><br>editing to add: It seems to me I can recall a few parents saying that although they have mentioned this site to their kids because they think it would be helpful to them, the kids have shown little to no interest in visiting here.....do you think that might have something to do with the fact they know you are on here? When I was a teen I for sure would not have come here and posted things if I knew my Mom family etc. was reading it. now I know my Mom and some family does see it but I'm older and I am more okay with that. As a kid and teenager, privacy is of the most importance and having parents invade that privacy was the worst! I can think of a few kids I have never heard from that might like the site whose parents are here and are great to have here, but wouldn't they like a place for their kids to feel free to share/vent/feel normal with. Just a thought.

 

[anonymous]

Ok, then perhaps there should be an age limit. I would be more than estatic if my partner lived past 40 with CF. Or 50. Some of us believe there are times way too early to die, and times when they have lived a fulfilling life. We ALL have to die eventually.

Thelizardqueen, I guess you don't get it. When she dies, she won't have to think anymore, or worry, or fear, or anything. That is what we believe death to be, maybe those that believe in heaven or such feel differently. I will still be here to cry about it for who knows long. By the very definition of existence, there would be no more "her" to be affected by her death. I don't want to learn more about the feelings of people in my situation. Why on earth would I? I already know how I feel, I don't need to reinforce my feelings. But my partner doesn't like to discuss lifespan because it makes her feel bad. So what option do I have left? To read the feelings of real CFers. NO ONE can imagine what any other individual goes through, that's just how life it is. Perhaps they can relate, but that's it. So I don't know why people keep coming up with this nonsense of "all CFers "get" the same thing, and all non-CFers "get" the same thing, and that's that". This is like some kind of mysticism here. People aren't manufactured to be different types of candy bars, where all non-CFers feel the same, all CFers feel the same, all cancer patients feel the same, all people that have lost limbs feel the same, all obese people feel the same, etc.

LisaV, this may be a new perspective for you, but not all people with CF think about their lifespan often. They avoid it. Why? To escape any of those feelings. And it's not an irresponsible thing to do, because once they're dead, the worries are gone and so are any obligations, since, well, their mind is gone. I don't have the luxury of simply ignoring it, because then it would be all the more devastating for when it comes, since I will surely still be alive. I have to face it and I try to. But I don't want to face it at the expense of my partner's happiness.

As for my partner, she doesn't have private conversations with others with CF. She would agree with what I am saying and probably say many of you don't understand what it's like to have severe CF so young. I could ask her to post her opinion too, to show not all CFers think the same and shouldn't speak for each other. It would be offensive to her to hear "you can't understand what your partner is going through", just as it is offensive to assume I can't understand what she goes. What's the purpose of even talking with other individuals if we can never "get" each other or understand. After all, none of us are the same, the degree of problems aren't the same, the circumstances are the same, etc. I don't believe in mysticism. A person only "gets" themself, but they can try their best to understand other people's situations. What is so wrong with that?

 

[LisaV]

It is not a new idea that the ill spouse doesn't think about life span much. My husband rarely dealt with death/life span issues until he became severely ill (end stage). Before that he just figured he'd live in the moment. Can't say he worried much about retirement, but other than that it was denial pretty much all the way. And I'm all for that. I think denial is a highly underrated coping mechanism.

And, anon, when you say that "people in the 60s might not get what it's like to not know if you will make it till your 20s" , you're dead wrong. Older CFers were told they weren't even going to make it to adulthood - that they would die as children. Just because they've lived passed their original predicated life span, doesn't mean that they don't remember only too well what it was like to be struggling to get through their 20s.

The idea that the adult CFers are veterans is actually a little bit off. ALL CFers are on the front lines of a battle. They are there for life--the battleground is <i>in</i> their bodies. The older ill folks (like my husband when he was alive) are like gnarly sargents. They know they've stayed alive because they got battle smarts and know what to do to stay alive - and because they've just had a lot of dumb luck. And like old sargents they have lots of good advice for the younger newer CFers about staying alive, avoiding battle fatigue, and dealing with their families on the homefront.

Spouses (and parents too though it seems less like that to them) are just the "support troops" at the home front (or maybe support on theatre, but still not actually the ones being shot at.)

There is nothing wrong with trying to understand. I just don't understand why you need a guarantee that you get to listen in on every conversation your partner has. Why not let her decide which conversations she wants to share with you and which ones she doesn't.

 

[anonymous]

So all CFers think they will die in their 20s now, EVEN when the average age of death is nearly double 20? So people that rarely go to the hospital, have high numbers, and are midly affected by CF, yet are IN their 30s, understand the same feeling that those that had severe CF as a teen and already contemplate lung transplants? They might have the same WORRIES, but they won't have hit the same lows of the low that the more severe patients are. Worrying is one thing. Experiencing the dread and severity is another. I see no reason to say all CFers "get" the same thing. Perhaps eventually they did, like you said, it's a progressive disease. Being at rock bottom in your teens is a lot different than being at rock bottom when you're around 40, though.

 

[LisaV]

Yes, being at rock bottom in your teens is different than being so in your 40s.
If your point is that there are differences among CFers than I grant you that.
(Although I might point out that some of the 40 year old CFers have been in respiratory failure in their 20s and pulled through.)

Still and all, there are more commonalities among CFers than between CFers and nonCFers. And, again, nonCFers can easily have private group conversations amongst themselves while CFers cannot -- unless they have a private adult CF forum. And no CFer has to post in the private forum unless they want to. This forum would remain. If the CFer wants to let it all hang out then they can continue to do so here.

Again, and for the last time, what is so threatening or "bad" about the adult CFers having a separate private forum? Why do we need to listen in on everything they discuss?

 

[littledebbie]

OH my gosh anon stop you're making my head hurt. No one is saying all CFers understand eachothers battles Exactly. But we underwtand certain things better than a non CF peron might. we know what it feels like to be to out of breath to talk. or we know what it feels like to have multiple iv's rammed into skinny little arms. Or we know that as a kid spending the night at a friends house for the first time can bring up embaressing things, bathroom issues, coughing and spitting etc. we know how sometimes you just really want to never do another treatment again. we know how these experiences have shaped us, the things we think about the other ways it afffects our lives. Some people feel free talking about all of that here, but probably there are some that would feel freerer to discuss those things where only other CFers were. Shouldn't they have a place to go to for this? Wouldn't you want that for your person?

 

[anonymous]

We don't "need" to listen in on anyone about anything. I wish to because I try to understand it better, to "get" it better. But instead I'm told "well, since you don't get it, we're not going to allow you the best opportunity to understand it more, and we'll still post to you, just not the stuff you really want to understand." And what I want to get are the most candid opinions of others. If I had mild CF is it suddenly ok to listen in? I really don't understand this. I realize people like to segregate themselves, you see it all the time with gender, race, social status, etc, but I have never agreed with it. If a bunch of people with CF know each other and want their own private forum, I wouldn't object. But inviting a stranger with CF soley because they have it, to have an exclusive club is something I won't agree with. This could bring up many arguments, like about black colleges, etc, but now isn't the time or place. I just don't think public forums are a place to segregate. I have more in common with my partner than anyone else here does, it would be absurd for anyone to claim otherwise. So what if she and others here both have CF? There's far more to a person than that. That's why we're together in the first place.

 

[thelizardqueen]

I see nothing wrong with having our "own" forum here as well. Spouses of terminally ill patients have their own forums to go to, parents of CFer's have their own forums to go to. There's nothing wrong with having our own section. I'd like to know what's so wrong with having our own little section?

 

[thelizardqueen]

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

I just don't think public forums are a place to segregate.</end quote></div>

What about the Well Spouse site? That's a public forum, but only people who are "well" can join up and chat.

 

[LisaV]

Quite right, Liz.
And the forums off of widownet.com are just for widows and widowers.
And many of the support forums for illness other than CF are just for folks with that illness.

Anon, you've made my point for me better than I ever could have.

 

[anonymous]

Then I suppose I have a fundamental opposition to needless segregation and classifications while others do not. Dissapointing, but I can't convince anyone otherwise. I'd never visit a forum for spouses of CF patients It would feel pointless and unnecessary to me. What would it do for me? Let me tell them how I feel sad? I'll never visit an "all guy's forum", or anything of the sort. I suppose some would say I shouldn't hear the most candid opinions of black people when they tell me I don't "get" what it's like to be black in America. No point for me to ever hear their real feelings on racism, I guess. This is the only good CF forum community I know about. I saw a UK one but didn't think it as revealing of feelings. That is the difference, if the real deep down feelings and opinions are hidden away here, where can I go? There are enough terminally ill sites out there but not that many for CF. Is there another good CF forum like this? If there is please let me know, and I'll just fade away.

 

[thelizardqueen]

Good grief! We're not telling anyone to go anywhere. We're not wanting to take away form the adult section we have now. Its only an idea to add on to the site, as another alternative for CFers. You wouldn't have to go anywhere, this adult section would still be here, there would just be another one for CFers. We have a right to have our own forum if we feel we want one, just like you have a right to go to a forum that is for spouses, etc. Its just another option for us CFers is all.

 

[anonymous]

I didn't mean to imply anyone is telling me to leave. But I meant the main reason I come here would be gone. I've looked for lifespan topics, and all the most depressing, fully open and honest topics I've been able to find. That's basically why I came here. I am educated enough about the facts on CF. I'm not interested in support for myself or information, just understanding, I want to "get" it more. This was the only forum I could find.

 

[LisaV]

If the choice is between having a place where you and I can eavesdrop so we get it or having a place where my late husband's nieces can post and get support without their mother or aunts reading their thoughts, I vote for having a place for his nieces.

(It's not a choice, of course, because most of the forums including this one would still be here...and I'm sure that many of the adult CFers would stay comfortable positing here.)

And the best person to help you get it, anon, is your very own partner. Only she knows what she feels and she's the only person with CF you really truly have to "get". If you two have trouble talking by yourselves, then you might try couples' counseling.