An ADULT only CF FORUM

[kayleesgrandma]

OK, I went back and re-read your post, and nowhere do I see that you were inferring that non-cfrs were not important. I thought you put out "feelers" to see what others thought about creating a specific site, and that you presented it in a thoughtful, questioning way. I do admitt that I felt a momentary twinge of "you don't want us here?", but I got over it 'cause I read it over again and saw that that was not what you intended. I can't <i>imagine</i> why you would be worried about "outside criticism"!

 

[anonymous]

Come on now, calm down! Thought we were here to support each other?

Charlotte<img src="i/expressions/face-icon-small-sad.gif" border="0">

 

[kayleesgrandma]

You're right Char--I can't believe how people can misread something that wasn't meant by the person. I think Enders Q was a valid one.

 

[anonymous]

i hope that you can sort something out on this site so that you can have your own private "page". it would be a huge shame if all the adults with cf left this forum <img src="i/expressions/face-icon-small-sad.gif" border="0">. we need you.<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[anonymous]

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

i hope that you can sort something out on this site so that you can have your own private "page". it would be a huge shame if all the adults with cf left this forum <img src="i/expressions/face-icon-small-sad.gif" border="0">. we need you.<img src="i/expressions/face-icon-small-smile.gif" border="0"></end quote></div>


I think some people are misinterpreting what he is saying. He is saying it would be nice if there was an *additional* area for just us CF patients to hang out and be around each other and hang out and not have to "contribute something to the fight against CF" all the time. I remember what it was like back when I was really young and we went to CF camp, before it was outlawed. It was just us, being able to hang out and be us and talk and share things, and not have to deal with the rest of the world. On the adult forum, it's more of a "fight against CF" type mentality, than a "forum for those with CF" type forum.


Besides, a few responses in this thread is a very good example of why it would be a good idea to have our own area. Just because we would have our own area doesn't mean we wouldn't come here. It would mean there would be an area where we would be around our own.

 

[anonymous]

Well said, I agree totally. As long as you do come 'here' cause we would miss you if you didn't, well I would 4 a start.

Charlotte<img src="i/expressions/face-icon-small-cool.gif" border="0">

 

[julie]

I too think the question was valid, and speaking for myself who doesn't have CF, I'm a little insulted that it would be mentioned. But at the same time, Like Terri said, you were just putting out feelers and it's reasonable to think that you would want to discuss your disease with others who HAVE it, and not the spouses or signifigant others. I don't think it's an unreasonable question/statement, but I think we'd all miss out on a lot if that happened.

And Ender, I'm just curious, not trying to be rude or anything. You rarely post on this site, and when you do it's usually in response to one of the heated threads, or a post that was created regarding a heated thread. It's my opinion (my opinion!!!!!) and suggestion that maybe you ought to frequent this site more often than just for the heated debates before making a suggestion like this. That way you can dip your feet into all the valuable information that is available on this site. Just my thoughts.

All in all though, I've learned so much from everyone on this site who has CF, so much valuable information I coudn't have gotten elsewhere. And I KNOW that many of us "non-CFers" (parents, spouses, relatives, sig. others) have contributed in other ways to help out those with CF. And the non-CFers help support the other non-CFers.

Just as I, someone who doesn't have CF cannot begin to know what you are going through with your CF (I try to understand but that's all I really can do), those with CF cannot begin to know what we as husbands, wives, lovers, boyfriends, girlfriends, parents, relatives... go through watching a loved one with CF struggle. Each battle is very hard and very different. But it helps me to hear from other CFers, to understand why my husband is trying to communicate to me, or sometimes fails to communicate to me. So I can be there for him with more understanding.

also, I do fear that if a CF only portion was created, that this one would be frequented less. Even though many say they wouldn't stop visiting, I fear they would and I need everyone on this site.

I also don't understand the comments about creating a CFer only section so one can avoid being criticized by someone who doens't have CF. I can't reacall when I've ever seen someone without CF, criticize someone with CF for something CF related (i.e.CFer "I'm feeling crappy today". non-CFer "well get over it your disease isn't that bad"). However, I do see other types of criticizm all the time on this form and it's not always a bad thing. But if part of the reason why someone wants a "CFer only" page is because they want to choose WHO they recieve their criticizm from, that's just petty and calls for some growing up. The world doesn't work that way.

 

[anonymous]

I would imagine (because I don't have cf) that perhaps Ender sometimes wants to vent and would be most comfortable doing so with people who feel the exact same way (so that those of us without the disease won't get offended). I can understand that. However, like Julie and others have said, I like to try to understand how you all feel and would miss out on a lot if conversations were going on someplace else. I think the "private topic" is a great idea. Invite whoever you want and talk about whatever you want without the fear that anyone else will see it! ;-) THat would be great for any of us who really need to vent those really personal feelings.
Katy

 

[thelizardqueen]

Well Ender, if you do decide to start a private topic, make sure you invite me.

 

[LisaV]

The longer this thread get the more I think Ender's suggestion is a good one.

I know a lot about treatments and such and am glad to share that information. I know a lot about the effect on the family and I'm glad to share that. I am delighted and honored to be able to offer support, etc.

I do <i>not</i> know what's it like to be sick and tired all of the time. Or what it's like to be the "sick" one in the family. Or what it's like to feel time running fast on <i>me</i>. Which means I just dont finally "get it" what it's like to have a chronic progressive illness (no matter how hard I tried). I never will.

If an adult CFer wants to talk to someone who gets it totally and completely in their gut they need to talk to another Cfer -- and they're better off not talking to me (or any other family member or friend). Sometimes I used to want to talk just to spouses of someone who was ill and now sometimes want to just talk to widows. Sometimes I just don't have the energy to bring others "up to speed" or want to filter out "Don't Get It" (DGI) comments. So I am completely understanding why an adult CFer would just want to talk with other adult CFers and not deal with us DGIs at all.

Another way to have a separate forum is to have people self-identify as adult CFers when they sign up and have an Adult CFer forum that only displays to those people when they sign on. That's a variation on a Gay and Lesbian forum on the boards of widdownet.com which only shows up to people who are logged on and not to anon posters.

Most importantly I have mentioned this site to my late husband's adult nieces (with CF), their mother and aunts. I am particularly interested in the nieces having a good place to talk with other adult CFers. I would imagine they would want to do that without their mother or aunts (including me) listening in to everything they have to say. ( And if my husband had been officially Dxd with CF, I'm sure he would have wanted a place he could talk without my listening in.) Sometimes the worrying about or being sensitive to how every other person in the family takes what you say or do or feel really gets old.

I really hope you can find a way to set up a completely private adult CFer forum.
-LisaV

 

[anonymous]

Lisa, what about people that only come here for the real, deep down personal problems CFers have, in order to better understand. We're to be given information and not be able to see what we really came for? It's like this would be the PR forum, while the real important things would be hidden. Otherwise why hide them? I don't understand. Why don't we just have separate CF forums for those that are really sick, those that are moderately sick, and those that are only mildly sick? It's basically the same thing. My partner is much sicker than most people on this site so I don't see why people with mild CF would somehow consider her "one of their own", she wouldn't think they understand her, hence why I'm the one that browses forums and she never converses with other people that have CF. Not everyone needs to have CF to want to understand the emotional and human components to the disease. I feel more apart of this community than my partner would, yet she has CF and I don't.

Gay and lesbians don't compare because they face hate mongers and heavy discrimination/harassment everyday. If my partner had cancer I wouldn't want cancer patients hiding away from what I was hoping to read and understand. I don't see people discriminating against CFers here, just supporters. I just see no reason to hide it other than the subtle implication that non CFers aren't worth sharing it with, or are somehow more alien, we aren't "one of their own". Whether people like to admit it or not, that's the reason at hand, that we're either ignorant or can't possibly understand so we don't deserve to read it because we might critisize it. It's really disappointing to see the idea get so much support, from non-CFers and CFers alike. If it ever happened I fear I would lose the reason I even browse these forums everyday.

 

[Seana30]

TO THE ABOVE ANONY..........

That is EXACTLY how I feel. Thank you for wording that so nicely. Sometimes it is hard to write down in words exactly what you are feeling!


Seana

 

[LisaV]

My thought is that a lot of the adults on this forum are actually fairly young adults. They are still young enough that they haven't completely separated from their original biological families (read "parents" and others in the "older" generation). Separating from your parents is a key developmentally tasks for anyone --and not all that easy. And it is particularly difficult and important for someone with a chronic illness whose parents have previously/traditionally acted as advocate and caregiver. And necessary to for CFers who are married - unless they want their spouse to become their caregiver.

Healthy boundaries make for healthy families.

I am quite OK about not finding out from a board what the deep personal issues of my family members are. I am quite OK with them sharing stuff with friends who completely Get it rather than me. When and if they want to share those personal feelings with me, they can either post on the regular adult forum or send me a PM or an email -- they know where I "live".

The most important thing for me is that the adult CFers have a place where they feel completely free and open in sharing what they feel. That's much more important to me than that I be able to eavesdrop on or participate in their converssations.

I can go out in the 3D world and meet family members for lunch or meetings any time I want. We can talk privately without my family members with CF knowin what we say. Heck we can even hug and kiss and such.

Adult CFers cannot meet other adult CFers anywhere in the 3D "real" world anywhere these days for fear of cross contamination. One single private place to talk seems like the least we can support/offer.

 

[anonymous]

LisaV gets it. Remember people, every post/reply on this site doesn't have to be devoted to information mining regarding a relentless fight against CF. By the time many of us CF patients are deep into adulthood like late 20's, 30's, or even 40+, talking about how to clean our neb cups or any of the other 100 other common points of discussion we have heard for the 10,000 time, gets a tad redundant. Is it pointless? No obviously not, because people ask about it, so please continue to ask about it. I'd personally rather have a place to really get to know other CF adults, in an environment devoid on non CF's (preferably just adults, but if it could be just CF in general I'd be fine with that also). That is what I would like to see is all. That way moms, dads, wives, husbands, girlfriends, boyfriends, friends, cousins, and whoever else who don't have CF but are very interested in CF and have *tons* of questions (usually of the 100 or so I mentioned above we have heard countless times) can ask it here and this place would stay exactly how it is now. The only difference would be there would be an all CF patient forum where CF patients (preferably adults, but whatever) can go to and talk and BS and just frolic and get to know each other, without everything being so factually based towards the pursuit of knowledge of CF, the fight against it, etc.


Kind of like a veterans hall where it's all vets who have served actively in combat in various foreign wars and will discuss their stories, without including all the outside politics that could possibly be leaked in the conversations. They still talk to their families and such, but they really like to just sit down and talk to each other and feel a form of connection. This forum here, is an information sharing forum for the most part. What Ender is talking about, and what I would personally like to see, is a place for us to actually feel like a community of CF's.

So far the closest that has ever come, and that has been very small, has been the chat room, and that rarely works properly.

 

[anonymous]

By the way for those feeling that if a seperate forum was made for CF patients, it would decrease traffic here. Remind yourself that a majority of us don't work due to our health so we have a ton of time on our hands. And that means we surf around on the net a ton, and read around on this site a ton. If anyone asked a question on here or posted something for support on here, trust me, there would still be tons of replies.

 

[LisaV]

My husband would have <i>loved</i> a virtual veterans hall. Goodness knows he didn't need any tips and techniques forum (he could have written it). Nor, frankly did he need to be supporting/protecting family members any more than he all ready did. He needed a place he could be "real". We tried to find him one in the 3D world but never could. And even if we could have, truthfully he couldn't have gotten to it half of the time (either because he was too sick to leave the house or because his time was eaten up by treatments).

Sometimes the best way to help some is to get out of their way.

 

[thelizardqueen]

The one reason I like the idea of an CF adults only forum now, is because all of us CFers talk about death. And a lot of people who don't have CF don't get it sometimes, or don't like the fact that we talk about death. With an CF adults only forum, we have freedom of speech to talk about stuff like that, and I suppose not worry about a girlfriend or parent come on and worry about that stuff when they don't necessarily need to. I talk about death all the time, because that's how I deal with it. I can't talk about it with my bf or parents sometimes, because they don't get it, and they've told me that I shouldn't dwell on it at all. I can't help it though.

I mean for the people who don't like the idea of a just CFer forum section, and wanting to hear all of the ins and outs of CF regardless of whether they're ready for it or not, or agree with it, is like a parent telling their kids to tell them everything going on in their life, and you just know that your kid is not going to talk to you about everything, because you don't understand, so they go to their friend who does get it!

 

[anonymous]

Above anonymous, why do you want to create it? Is it because we're alien and can't understand? Are there specific cases of criticism here that you've seen that you want to escape? I don't care to read about information I've heard about before either. Just because I don't have CF doesn't mean I don't already know information about the disease. I probably know more about chaperone proteins involved in CFTR mis-localization than anyone else here but I don't care to hear or talk about it in a forum like this. Facts are different than feelings. I care to hear the real feelings and real opinions of posters, about how it affects them deep down, their worries and fears, that's the only reason I come. I worry about my partner everyday, that she will die before she's even 30. I worry about how she really feels, what she thinks about, but I don't bring it up often because I don't want to stress her and make things worse. This is my only source to find those deep down, uncensored, candid feelings. And now people want to take a lot of that away from me because I wasn't born with the disease. How is that fair? I understand if friends want a private forum. But if "you have CF, you're in" is the only condition to get in these private forums, it's really saddening to me, because I haven't seen any reason besides "you don't understand, you're alien, you aren't one of our own", and I don't think those are good reasons.

 

[LisaV]

I believe that my husband would have <i>loved</i> to have a place he could have talked about death and such without my hearing about it. We did talk about it, but he hated worrying me (he knew I worried all of the time, even tho' I got real good at the "bravado" thing). I believe he wanted to (<i>needed</i> to) talk to others who were in the same situation that he was in with<i>out</i> having to think about my feelings for even an instant.

And, you know, those of us without CF really sort of are aliens to those with it (and vice versa). It's not an insult. It's just a fact of life. I would expect that there would still be enough conversation on this adult forum that we could learn from each other. And more importantly conversations with our loved ones will help us better understand (and need to happen because aliens are different from each other so you can't find out how alien A feels by listening to alien B.)

But completely trully "Get it"?
Ain't ever going to happen.
No how.
No way.
Never.

But that's OK. That's part of the mystery of love...

 

[thelizardqueen]

Just like people who don't have CF don't really understand what its like, us with CF don't understand what its like to love someone with it. We all understand to a certian point, but after that we're clueless.