WOW!! I missed out!!

[ccflewallen]

Man!! I have been away from this sight for a little while, and I missed the abortion issue and the "CF/Poverty thread, and now they are locked! Oh well, I am not going back to those messages because it will just get locked as well, but I was surprised to see WinAce and Mockingbird get into it like they did. I hope you two have sorted through your differences. I remember Mockingbird and I had our own spats when I first joined the forum.

Anyway, I stopped posting for awhile because I met a young 13 yr old girl who of course has CF. I have really enjoyed talking and encouraging her to do her best to stay as healthy as she can and not listen to the negativity that often floods this forum. Not everyone is so negative I know, but we need to be aware that everyone has access to this forum, not just adults. I would not wanting my children (if I had children) reading much of what is posted on this forum.

Maybe everyone who wants to sit around and talk about how bad Cf is and be depressed and stuff can start a new room so that people will know before going in that they would be reading at their own risk, and that reading them could cause onset of depression or feelings of doom and gloom, and thoughts of eminent death, because thats how I feel after reading some of the threads on here.

It would be different if those who post those messages were looking for encouragement or were willing to try having a positive outlook on life, but many do not. They just want everyone to know that if you have CF you are the most unlucky person in the world and you are going to die. Thats just what it seems like sometimes, I know no one is purposefully trying to do this.

ccflewallen

 

[Lilith]

I hate to tell you this, but you said that you weren't going to go back to these arguments and you are. Intentionally or not. You may want to rephrase or reconsider your post before this, too, turns into a huge, flaming debate. And, even though everyone DOES have access here, the forum is clearly titled 'ADULT'. If someone's not an adult, no one on here is responsible for what they read if they really don't belong here. Just my opinion. Also, starting a new room wouldn't do much good, I'm afraid. There are often topics on here that have nothing to do with depression that turn sour anyway.

 

[luke]

ccflew,

Unfortunately the reality of CF doesn?t allow many of us to see the world through rose colored glasses. As Lilith stated this is the "adult" section and we deal with "big" people issues. Sometimes these topics go off on tangents and personal attacks happen. But any time opinions (often times anonymous) and the Internet are in question people become very brave and out spoken about their views. It is just the nature of the beast. Good luck to your friend in growing old!


Luke

 

[JennifersHope]

I have to echo what everyone else said....... This is an adult forum and even though, esp for me, CF is not a doom and gloom thing and I at this point in my life, (Subject to change) I am not someone who veiws CF as the end of the world or emminet death just a major pain in the tush...But that is because I have almost normal lung function, and other then being in the hospital a lot and daily treatments.. I have been able to live a good life... without being miserable most of the time ..

...Many of us come on here to exchange great information, new ideas and support... I can't tell you how helpful this board is for me.. It is like an extra security blanket..to know I can come here and get support. But also sometimes we need to vent, whine and complain, because this is where we are understood and a lot of times we don't want to burden our family with more issues.Some ppl don't have family to talk to or support systems.

.It isn't like people always feel this way, but if ppl who are in a bad mood or having a bad time like WInace, have to put on a front of how they are feeling here... what is the point???? It is nice to know you can be brutally honest with your feelings and not have to worry.. I happen to have a great support system, and I hope you do as well, but think about it.. who can understand a bad CF day better then a CFer?????

One last thing, because I agree that even though you said you weren't going to, you did, GO back to the post, even though it is locked you can read it.. you will see all of our thoughts....THe moderator closed this topic for a good reason......we are not going to all agree...

I do understand about wanting to set a good example for the 13 year old, the best things I can think of to tell her are to GO FOR HER DREAMS, take good care of herself, do her treatments and know that sometimes, when she is feeling down, it is okay to vent, whine and complain...

Also a 13 year old is in a totally different ball game then an adult as far as advances in medical treatment.......

Good for you for reaching out to a younger person...

Jennifer
33/ w CF and Addison's

 

[ccflewallen]

Young people with CF often want to find out who the "adults" are and find out how they are doing and if they are in good health on so on. I know this is an adult room, which is exactly why we should be expecting teens to maybe come here looking for advice and encouragement. Thats all I was trying to get across. I guess I was just a little aggrivated at the time. The girls parents now do not want her coming here because they too came and saw how things were discussed.

You are right Lilith, many do come here and exchange great information and often do having encouraging things to say. But as the saying goes, one or two bad apples can spoil the whole bunch. Thats why I was saying that about the seperate room, not that it was bad for people who had negative stories, just that it would be good if a young person come here and simply not be discouraged in their battle w/ CF. Thanks for your views everyone. Sorry for coming across so bluntly before.

ccflewallen

 

[Diane]

well as stupid and trivial as this will sound....we are ALL going to die ( cf or not), not one person on the face of the earth will escape that . I get scared sometimes when i read bad things on here , but i also keep in mind that healthy people die every day. Unfortunately with cf we tend to focus on life expectancy. That cant be helped especially when every article you read about cf mentions a shorter life expectancy. In honesty if i had seen this board when i was young, it would have scared me straight ( so to speak). I was very naive about cf and since i ws healthy i didnt have a clue how bad cf can get nor did i have any idea whatsoever about contracting other bacterial infections. I was terribly misinformed. BUT had i'd seen what's on this board, i would have definitely learned more, and taken better care of myself and possibly have been able to avoid getting b.cepacia. I know we all want to shield the younger ones from reading scary things but sometimes reading the scary things is a necessary evil.

 

[ccflewallen]

If a room were titled in a way that people knew they were going to see bad stuff I think it would help because then we would absolutely know that if we read in the room, we might now want to go there. On the flip side, if someone wanted to hear the bad stuff (which you are right Diane, is necessary sometimes) they could do so at their own risk. But if I met a kid w/ CF who wanted to talk to someone about CF, I would be hesitant to send them here to read about abortions for babies w cf, eminant soon death, and so on. I know those are real issues, but not necessarily things a 13 yr old is ready to hear about. Do you know what I mean?

ccflewallen

 

[abloedel]

As the mother of a teenager (17 this week) and an "old" person with CF, I find this board the one most help psychological aspects in my life. This is the one place you can be honest with your feelings about your lung functions, infections, how you're feeling, and yes...even death.

I do visit the "teen" portion of this board and find the majority of the teens here to be even more mature and "old before their time" than my daughter (no offense if you're reading this one Em). I am not saying that my own daughter is immature in anyway, as I know deep down she knows I am dying and that scares the crap out of her. I also know she posts here as an "anonoymous" poster as she is willing to share her feelings, but not yet ready for me to read them...and I am ok with that.

I guess what I am getting at is that anyone who is affected by this horrible disease and has a full understanding of its impact can surely handly the postings on this "adult" site...as we have all had to "grow up and be the adult" before our time!

Amy
36 w/CF and mother to Emily (no CF), 17

 

[julie]

Honestly, is your intention to get this locked? I don't understand the reasoning behind why you are choosing to revisit this topic, even after you say you won't. Definately have to question your integrity on the matter.

As for the information posted on this forum, there are clearly ADULT, FAMILY, TEENAGE AND YOUNG ADULT sections (as well as others). Nobody forces the teens to come onto the adult section, and NO adult ever posts inappropriate responses or topics on the teen or young adult forums. Yes, we as adults do post there on occasion, as do the teens/young adults post here; but nobody is posting anything offensive in areas geared towards the younger crowd. It is not my place, nor anyone elses place on this forum to ensure that anything that might be posted is appropriate for all ages. That is not what this ADULT section is about. Nothing can or should take the place of parental supervision, guidance, rules and restrictions WITHIN THEIR OWN HOME. That is what is wrong with society today. Many people want to make other people responsible for the actions of their children, IT STARTS IN THE HOME PEOPLE!!!!!!!!!! Your comment: <blockquote>Quote<br><hr>I would not wanting my children (if I had children) reading much of what is posted on this forum. <hr></blockquote> really infuriourates me. There is a simple solution..... (if you had children) DON'T LET THEM COME ON HERE.

I just don't understand your motivation for what you posted here, if you are going to come onto this forum and bad mouth it, you really have a lot to learn about life and manners. If you are frustrated with this forum, take a break, a LONGER break than the one you did. Visit some other forums, you will see that they too have their own issues, some different from ours, some the same-but each place has problems. Don't come here and badmouth what goes on. If you don't like a particular topic or if it offends you.... STOP reading it immediately, and for heavens sake, don't respond to it. People have a right to vent what frustrates them about Cf, REALITY CHECK, life is tough without CF, I can't imagine the added diffuculties with it. Vent about how CF frustrates you, holds you back, intimidates you, infuriates you... that's kind of what this forum is for.

Who are you to say that thos making those posts weren't looking for encouragement? You are pretty off on that one. Sometimes people just slip so far into a black hole, that they have to talk it to death and wallow in it until they get the strengthy and support to get back up. Just because someone is discouraged and negative, doesn't mean they don't want encouragement.

Oh and by the way, YOU ARE GOING TO DIE SOMEDAY, ME TOO, and I don't have CF. Is that news to you?

It is nice and wonderful that you are reaching out to a younger CFer, those things will always make you feel good about yourself and your life. But, there is absolutely NO reason why we need to put on a show for any tees that might come wandering into this adult section. THIS IS REAL LIFE, not television, not a movie, not some fake pretend lala land.... this is the reality of life for older people with CF and the loved ones, friends or family of adults with CF, there is no reason why we should have to prented otherwise.

 

[ccflewallen]

First off, I said "many" do not come for encouragement, not all. Second, it's sad yes, but parents do NOT always monitor what their children are reading. Third, I did not revisit the topics of abortion nor poverty, which were the topics locked. Fourth, I did not say anything was "bad" about this forum, just some of the posts. Once again, second time today actually, someone has taken a message and tore it to pieces to make it say something that suits them so they can jump down someones throat. Fifth, if a comment made by someone you have never met or saw infuriates you, chill out a little. Its just a comment, and again I would not want my children or teenagers participating or reading such negativity unless they were old enough to not let it worry or get them down. Seriously, a parent told me the other day that they just sat and cried as she read some of the things being said on here. They had no idea they were going to see what they saw when they came here. Again, as I did say earlier, it is necessary to know that there are real life issues and it is important that we vent about them from time to time. You are right about that one. Also, I agree that sometimes we need to talk about things going on in our lives to deal with them. I did not say anything contrary to that, now did I. Furthermore, I ALSO said to finish up my post

"Thats just what it seems like sometimes, I know no one is purposefully trying to do this. "

The key word there was "seems". I wrote that on purpose in an attempt to not make you think I was claiming what I was saying to be accurate or true. I guess it didnt work.

ccflewallen

 

[CFHockeyMom]

<blockquote>Quote<br><hr>That is what is wrong with society today. Many people want to make other people responsible for the actions of their children, IT STARTS IN THE HOME PEOPLE!!!!!!!!!! <hr></blockquote>

Kudos to Julie for making that statement. You hit the nail on the head!!!

 

[Lilith]

I agree with Julie completely. Just because some parents don't do their job doesn't mean we have to pick up the slack. Ccflewallen, I respect you for trying to mentor the girl in question, but I don't think shielding her from this forum is going to help her in any way. I know that once I came to this forum myself, yes, I was scared to death by what I was reading and how bad this disease could get. I was ignorant to the complications that I didn't understand. But through reading those so-called 'negative' posts, I also LEARNED a lot. It doesn't depress me, it just makes me more appreciative. I don't think you're giving the 13-year-old enough credit. A lot of teenagers have heard much worse by just going to school every day; I know I did. If her parents have also banned her from this forum, well, they're making a huge mistake. I think people that try to shield their children from everything 'evil' will find that, in the long run, they've done their child more harm than good. The world sucks in reality, no matter how much people try to pretend otherwise. Keeping a positive attitude about it is one thing, but to ignore it is the worst thing you can do. She needs to see how things are handled in reality in order to build up resistance to them. That's my take on it, anyway.

 

[ccflewallen]

The statement "it starts in the home" does make sense, however it might be more true if there were someone at home to teach the children. The sad fact of the matter is, they are not. After a child starts school, parents often become less and less involved in their children's lives (I said often). Parents are having to work more and more, and therefore spend time with children less and less.

I teach preschool and i kid you not there are children who are dropped off at daycare at 6am, we pick them up at 7:30am, then we take them back to daycare at 2:00pm, and their parents pick them up at 6:00pm. So that leaves time for parents to drive their kids home, feed them, give a bath, and send them to bed. And I am talking preschoolers here, not teenagers. It's even worse for that age group, cause they dont even go home sometimes til after dark and probably never spend any time with parents.

SO it could easily be said that kids and children spend much more time at school, watching tv, with friends, playing video games, etc, than they spend with parents at home. If there are families that still come home all at the same time, spend time together, eat a meal together, spend weekends together, etc, they are certainly in the minority in my opinion.

I agree 100% that it SHOULD start at home, but it doesnt always happen that way, I feel we need to do our part as people who care about the future of children, and do our best to be as positive enfluences on them as possible.

ccflewallen

 

[julie]

ccflewallen

Are you aware that life is made up mostly of how other people interpret what you say or do? I can't believe that you stated you actually work in the real world, because based on your lala land comments, it seems unplasuable. Your boss could fire you because they interpreted something you said a certain way, when in reality you meant something totally different. A lover or a friend could leave you because they interpreted something you said or did a certain way, even though you didn't intend for it to be "taken" that way. Life is a little about what you actually say and do, and the rest is left up to how those around you take it.

If one person gives you feedback in life (or on this forum for example), it might not weigh too heavily on you, nor should it. If 5-10 people give you feedback on the same thing (on this forum for example), you might want to consider what they are saying because it's you on one side of the fence and 5-10 on the other-you are the only one who sees it your way. If 10-20 people give you feedback -EXACTLY AS IT HAS BEEN DONE ON THIS FORUM, you need to STOP, RETHINK AND STEP LEFT! (step left meaning, consider something different, internalize their feedback). It's really unlikely that 20 people are wrong and you are the 1 person that is right. WHEN THE WORLD GIVES YOU FEEDBACK, YOU OUGHT TO LISTEN!!!

 

[julie]

And, parents don't have to be home 24/7 to impose rules. There ought to be trust built in older children/teen's. My mom worked 2 jobs when I was growing up and my dad workd 10 or 12 hour shifts every three days, one to two days off, three days on again. I went through my rude nasty teenage stage, and they weren't always there to supervise me. BUT... they laid down the law from the start when I was younger. Trust was build, bonds were formed and if I broke that trust-which I did on about 3 occasions, I was in a world of hurt.

By no means does a parent have to be avilable 24/7 for a child to understand principles, behavior, trust, integrity, boundaries and so on... but it does take a lot of work on the part of the parents. AND THAT MY FRIEND, is what some parent's today aren't willing to do.

 

[ccflewallen]

My boss would actually see me, hear my tone, and let me clearly explain what it I say. My boss doesnt jump to conclusions about something I say. Actually I cant think of a time when it has even been an issue. I didnt say that your parents didnt do a good job with you. It sounds like they did fine. As for interpreting what people say just by reading here, I would say many are just angry, depressed, miserable people. That would surely be an inaccurate interpretation, thats why we should try not to make those interpretations. Thats includes myself by the way, hehe.

That was then, this is now. ANd I see them everyday at work, at school, at church, everywhere I go I am watching kids. Thats what I do, work with kids, all the time. Well actually right now I have strep throat, and am not working tomorrow. SO i know what they are thinking and what they go through. No, none of them have CF. But I have a pretty good idea after eight years what goes on their minds, and I know what their home lives are like. I dont know exactly what you mean by lala land comments.

ccflewallen

 

[julie]

<blockquote>Quote<br><hr>As for interpreting what people say just by reading here, I would say many are just angry, depressed, miserable people.<hr></blockquote>

You did say this in a number of your posts, so don't backtrack now unless you are willing to admit you made a mistake.

You do live in lala land. It's great that your CF doesn't affect you, my husband's doesnt affect him much either-great. But that doesn't mean I don't catch him browsing the topics and discussions on here-never posting-but always finding new things he saw posted on here, to talk to his CF doctor about or to talk to me about.

You have a mighty fine boss to never jump to conclusions. Just remember, he/she is only human too and they just might have one of those days. IF EVERYONE ON THIS SITE HAS A PROBLEM WITH YOU, BECAUSE OF WHAT YOU POST, DON'T YOU THINK THAT'S JUST A LITTLE BIT (OR ACTUALLY, RATHER HUGE BIT) OF FEEDBACK? That is what I mean by lala land. You are so caught up in your own fairtale world that you can't stop for one second and check in with reality. However tragic, it's not my problem so I really don't care-other than its starting to become rather amusing and I do feel that shortly, you will not be welcome to post on this website!

 

[anonymous]

My goodness, did you not read the very next sentence!?????????? Sure you did, you are just doing what you always do, taking out of context. And by the way, that was the only time I said thos exact words, and I said, let me say again "That would surely be an inaccurate interpretation, thats why we should try not to make those interpretations. Thats includes myself by the way, hehe"
You see just because I am outnumbered by people who disagree with me doesnt mean much, because I already knew that when I brought up these questions. I knew most or all of you would disagree.

ccflewallen

 

[julie]

Then why do it, you are just going to get yourself kicked off this board.

I have to wonder, is that why you are posting annonymously now?

And by the way, you don't even take your own advice, I quoted you exactly as you wrote it, one complete sentence. It's not my fault you are illiterate enough to open your own senteces up so they can be quoted in a manner other than how you intended them. It's how you wrote the sentence isn't it. I hit the copy and paste button, so there is no margin for error there. And by the way, if you read the sentence below where I quoted you the one that states "YOU DID SAY THIS IN A NUMBER OF YOUR POSTS, SO DONT' BACKTRACK NOW UNLESS YOU ARE WILLING TO ADMIT YOU MADE A MISTAKE" I clearly acknowledged the fact that you WERE NOT stating those things in this sentence, in fact, you ATTEMPTED to state the opposite and make us believe that interpreting on this board would lead one to believe that people are "ANGRY, DEPRESSED, MISERABLE PEOPLE", but you don't believe that is the case. I simply pointed this quote out to you in order to show you that you contradicted yourself here on this board. In another topic you posted about how miserable, depressed, angry and graphic people are on this site. And then here you post that interpreting the above would be wrong because it isn't true.... DON'T TRY TO GET PEOPLE LOST IN YOU LITERATURE BECAUSE YOU ARE FAR FROM BEING A NOVEL WRITER! YOU ARE A LIAR AND NOTHING MORE. GET OVER YOURSELF

 

[Lilith]

Well put, Julie. Why the hell would you post if you knew it was going to start s*it? Actually, I think that's your whole purpose on this board. You WANT to piss people off, don't you?