Questions...

[anonymous]

Hi all!

It saddens me that this board it not being used for the purposes of which it was intended. I come here with many questions. Maybe it's timing, but I seem to always have a question when there is "drama" going on. If I do post (which I have only done a couple of times), I get little or no responses. Please think about those people who are just starting to deal with CF. Would you feel comfortable here?

 

[Allie]

Anywhere you have people in close quarters, there will be drama. We're a family here, and though we all disagree, and fight, we pull together when we need to. It's human nature, the way it is. I try to answer if I can.

 

[thelizardqueen]

I know that despite the drama I'm always here to help, and I try to answer any thread where I may be able to help. With all the drama going on, you need to take it with a grain of salt. Like Allie said - we're a family. All families butt heads and have a difference of opinion, but when the chips are down - we're there for each other. I myself have gotten a wealth of love and support form this site, and I don't know what I would have done without it. I love this site. We're family!

 

[Emily65Roses]

Basically what the other two so far said. We do get angry, but so does everyone. Some of the worst fights I've had have been with my fiance. And I love him to death. Just so happens, we get into disagreements, and because there's so much emotion involved, they get to be pretty nasty sometimes. Doesn't mean I love him any less.

As for getting little to no answers on your threads... I only answer when I feel I have something useful or informative to say. I know a good deal about some areas of CF, and I don't know much of anything in some other areas. If you happen to ask in areas I don't know, I'm not going to pretend I'm a genius and say crap I don't know to be true. If you ask about, for instance, ports, I will instantly become a wealth of information... heh.

 

[Allie]

<div class="FTQUOTE"><begin quote>If you ask about, for instance, ports, I will instantly become a wealth of information... heh. </end quote></div>

Bordering on rabid cultic fanatacism <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[icefisherman]

I know where you are coming from. sometimes people miss it, other times there are so many other posts it gets bumped off the first page quickly, and other times people don't respond. But sometimes people don't respond just because they don't know. The meaning of this site is differen't for a lot of people, but getting help with our cf problems should always be a big part of it. I'm always willing to help on anything I can, and i'm sorry if I missed anything. Hang in there. If need be you can PM me with questions.
Hope all is well
Ben

 

[julie]

Do you have something you need to post that you could use some help/support/guidance with? I would love to hear what's going on and if there is anything we can do to assist you. There is a lot about CF I don't know of can't answer but there are also some other things relating to CF that I've become quite versed in. I hope you do post your question and allow us to give you some assistance...

 

[Diane]

I always help with any situation that i have experience in or know a lot about. Sometimes even if i dont know anything about it, i just offer my support . To be honest if i were a newcomer , i would second guess my decision to stay. We all know we are family and argue and come together when one needs it, but a newcomer seeing all this fighting has no idea that we are anything but argumentative and unsupportive towards each other so that could chase them away . If we missed a post where you needed help , please post it again.

 

[anonymous]

Thanks to all that have responded.

Honestly, I do learn a lot from this forum. It is just my hope that other people who venture to this site will not be put off by the arguments and miss out on some really helpful information and support.

 

[Jane]

Sometimes its helpful to post in multiple places. If your question is overlooked in adult, it might get seen in families. You could also try to re-word your question.

I agree that its frustrating to post and not get many replies, but on the other hand, I don't always reply to posts if I can't add something of use. Are you looking for answers or just acknowledgement? (not being sarcastic, I'm really curious)

 

[anonymous]

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

Sometimes its helpful to post in multiple places. If your question is overlooked in adult, it might get seen in families. You could also try to re-word your question.



I agree that its frustrating to post and not get many replies, but on the other hand, I don't always reply to posts if I can't add something of use. Are you looking for answers or just acknowledgement? (not being sarcastic, I'm really curious)</end quote></div>

 

[anonymous]

Sorry Jane! I was going to quote and reply. ( I am new...<img src="i/expressions/face-icon-small-smile.gif" border="0">)

My answer to your question would probably be both. Not just for myself, but for a lot of others that post as well.

I started this thread in hopes that everyone would step back and take a look from a newbie's point of view. I understand family dynamics and I also understand that not everyone will have a response. I would just like to see more support to all.

 

[Scarlett81]

I totally see your point anon. If I just showed up, I honestly am not sure if I would stay or not. I don't know. It's easy to get hooked to this place though.<img src="i/expressions/face-icon-small-smile.gif" border="0">

For the most part-like 90% of people here have good hearts, and want to be supportive I find. They may not always agree with you, or tell you what you want to hear and I think that's fine.

I just think that you can make a point and be polite and respectful at the same time. But some people feel that if they do that its censoring themself, or taking away their freedom of speech I guess. No insult intended to anyone who feels that way, that's fine. I disagree though. I feel that you can say what you mean and be polite at the same time. Sure there's times when we all post something heated, or we're passionate about a topic, or we say things we later regret.

Anyway, just saying I hear you. Sometimes I find things here very discouraging too, and it makes me think about throwing my computer away. You wonder if people would even notice-(Just to cover my butt for that, that's not a personal comment to anyone, just how I feel sometimes)

If you really want to be part of the community here, it is worth dealing with all that stuff pretty much. You'll bypass that, and find people here to help you when you need it. And like any community there's people that are better equipped to deal with a certain problem than others, and you'll find your comfort zone.

 

[LisaV]

Hi anon,

Coming in late - and not to start anything - but one thing to remember is that the people on the Adults forum (which really means Adults with CF) are not new (typically, tho every once and a while there are newly diagnosed folks posting). Most of the adults with CF are pretty comfortable wth their dx and sort of "tell it like it is"., Not that folks aren't empathetic just that there is more bravdo than maudlin. It seems to me that there should be one place where adults with cf can hang out together without worrying too much about whehter or not their "acting correctly" in the sense of being ultra supportive --and it has to be here in cyberspace since adults with cf can't be together in the real 3d world. They are also very computer (forum and chat) savy and used to the pluses and minuses of communicating that way.

I see that as a feature, but not everyone does (particularly not parents of newly dxd kids.) IU think that's why the site also has the Newly Diagnosed and Family forums as well. Also, if you don't have CF yourself, I'd recommend the real inperson support groups for parents and family of CFers that are out there in the real world. It can be really helpful to connect with other parents who are experiencing the same things face to face.

 

[anonymous]

Hi Lisa...thanks for the information...unfortunately, the newly diagnosed site does not get much activity. The only discussions from today, were "bumps". Prior to that was a new parent waiting on blood tests...she updated the site...as of now...she has not gotten any responses (posted on 8/21). Prior to that the last post was on 8/16. I think that is why so many people go to the Adult section.

Also, being new to the board may not always mean new to CF...: )

 

[anonymous]

right. being new to this board may not mean that one is new to cf. but adult cfers who this particular forum is primarily designed for (I'm generalizing here) are typically of an age to be quite savy about instant messaging, blogs, forums, chat, etc. They also have used it a lot when they've been laid up with an exacerbation and have lots of online friends. I think that's one reason why the adult forum is so lively.

So if the other forums are slow and people come here to post and read it's sort of you get the good with the bad - it's kind of the fast lane for someone who is new to forums.
-LisaV