here is what gets me...

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coltsfan715

New member
Hey there,

I agree I think that there are things on this site that have the potential to be taken negatively.

At the same time I don't think that is the intention of the people that post them. As for the Death posting I am so gald that was posted. I am afraid to talk about death with my family and friends and only do it on rare occasions when I "need" to talk about it. It was nice (for me) to come here and see that I am not the only person that gets scared about the things I get scared about when it comes to death.

As for the friends thing. I have had friends that don't understand, and I have gotten angry over friends complaining about "nothing" things when I have to deal with stuff that hurts more most of the time - its not something that I do all the time but on occasion. It is frustrating, I am sure for many people, when you have a problem/illness and it gets downplayed everytime you are sick, but when someone you know (that downplays your problems) acts like their sore throat is the end of the world - yeah sometimes you want to scream.

I think this site is great for giving advice. I can come here and I see posts that ask for help or ideas on how to handle a certain situation. I think it is great the helpful responses that are given. In so many cases there is at least one person but many times numerous people on here that have experienced the exact thing the poster asks about. I think the medical and supplement advice is great too, it can bring things to light that others may not have known about but that can be beneficial to them. I don't think that every supplement works for every person, but if posting the info on here benefits one person I think it has a right to be here.

On the whole I don't think there is too much negativity. I think it may seem that way at present because there have been alot of "heavy" topics posted. I think it ebbs and flows. Sometimes you are going to click on the boards and see a high number of "we just got married ... my PFTs are up ... I am having a baby ... my cultures are clear ... I got a trasplant and am fully recovered posts" and others you are going to come to the boards and see "I am depressed I need help ... I am sick of people not understanding ... I feel like I am fighting my battles alone ... death/dying ... I just spent 15 thousand weeks in the hospital and I want to shoot the nursing staff (JOKE) posts" It is just how it goes. In the long run there is an equal number of positive to negative posts I think.

I hope that people don't feel they can't post here just because what they have to say might be negative or a bit of a "downer", just like I hope people don't stop posting if their comments are positive and happy. It is the balance that makes this site wonderful the people that come here and share their feelings and support each other when they feel they can't go anywhere else for support. I personally probably wouldn't come here if every post was happy go lucky ... I AM happy person and I hang out with happy people - sometimes I get tired of having to be happy all the time - like nothing is wrong - and I want to be able to go somewhere that I know people can relate and that helps me to realize other people do feel the same way.

Have a good one,
Lindsey
 
C

coltsfan715

New member
Hey there,

I agree I think that there are things on this site that have the potential to be taken negatively.

At the same time I don't think that is the intention of the people that post them. As for the Death posting I am so gald that was posted. I am afraid to talk about death with my family and friends and only do it on rare occasions when I "need" to talk about it. It was nice (for me) to come here and see that I am not the only person that gets scared about the things I get scared about when it comes to death.

As for the friends thing. I have had friends that don't understand, and I have gotten angry over friends complaining about "nothing" things when I have to deal with stuff that hurts more most of the time - its not something that I do all the time but on occasion. It is frustrating, I am sure for many people, when you have a problem/illness and it gets downplayed everytime you are sick, but when someone you know (that downplays your problems) acts like their sore throat is the end of the world - yeah sometimes you want to scream.

I think this site is great for giving advice. I can come here and I see posts that ask for help or ideas on how to handle a certain situation. I think it is great the helpful responses that are given. In so many cases there is at least one person but many times numerous people on here that have experienced the exact thing the poster asks about. I think the medical and supplement advice is great too, it can bring things to light that others may not have known about but that can be beneficial to them. I don't think that every supplement works for every person, but if posting the info on here benefits one person I think it has a right to be here.

On the whole I don't think there is too much negativity. I think it may seem that way at present because there have been alot of "heavy" topics posted. I think it ebbs and flows. Sometimes you are going to click on the boards and see a high number of "we just got married ... my PFTs are up ... I am having a baby ... my cultures are clear ... I got a trasplant and am fully recovered posts" and others you are going to come to the boards and see "I am depressed I need help ... I am sick of people not understanding ... I feel like I am fighting my battles alone ... death/dying ... I just spent 15 thousand weeks in the hospital and I want to shoot the nursing staff (JOKE) posts" It is just how it goes. In the long run there is an equal number of positive to negative posts I think.

I hope that people don't feel they can't post here just because what they have to say might be negative or a bit of a "downer", just like I hope people don't stop posting if their comments are positive and happy. It is the balance that makes this site wonderful the people that come here and share their feelings and support each other when they feel they can't go anywhere else for support. I personally probably wouldn't come here if every post was happy go lucky ... I AM happy person and I hang out with happy people - sometimes I get tired of having to be happy all the time - like nothing is wrong - and I want to be able to go somewhere that I know people can relate and that helps me to realize other people do feel the same way.

Have a good one,
Lindsey
 
A

anonymous

New member
Part of the problem with email, message boards, etc. is that when you're typing a message it might not reflect what you really mean to say. When you talk to someone face to face you have facial expressions, voice inflections to reflect humor, sarcasm. You don't have that when you're typing and sometimes what you mean to say and what you actually type can call flat or sound different.

Sometimes ones first reaction when they see something they don't agree with, think is wrong is to shoot off a message on impulse and once that message is sent, you can't take it back. We're all doing the best we can with what resources are available to us. I'm thankful there are sites like this. I'm also thankful that when DS was first diagnosed we were referred to an accreditted facility in the city. Our local pulmonologist is a complete nutcase and I can't IMAGINE what life would be like if he was our only source of CF information

Liza
 
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anonymous

New member
Part of the problem with email, message boards, etc. is that when you're typing a message it might not reflect what you really mean to say. When you talk to someone face to face you have facial expressions, voice inflections to reflect humor, sarcasm. You don't have that when you're typing and sometimes what you mean to say and what you actually type can call flat or sound different.

Sometimes ones first reaction when they see something they don't agree with, think is wrong is to shoot off a message on impulse and once that message is sent, you can't take it back. We're all doing the best we can with what resources are available to us. I'm thankful there are sites like this. I'm also thankful that when DS was first diagnosed we were referred to an accreditted facility in the city. Our local pulmonologist is a complete nutcase and I can't IMAGINE what life would be like if he was our only source of CF information

Liza
 
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thelizardqueen

New member
Here's the thing. You say you're tired of all the negativity? - Last time I checked CF wasn't a positive condition. CF has both positive and negative points to the disease. If you see something you don't agree with, or don't want to read - then don't read it. Death is a perfectly normal and natural thing to talk about. People don't come on here just to spout positive things, we also come on here when we're feeling down, and need to vent. That is the whole point of a forum - everyone has a difference of opinion.

Who ever said that people are supposed to listen to everything they read on the internet? - if you don't want to read about "eating low calorie healthy food, go off antibiotics because they're bad and cause resistance, play with toys at the CF clinic while sitting in a germy cesspool of a hot tub with a group lf people who have cepacia." don't read it, don't follow it. Everyone is different when it comes to how they treat they're health, and what works for them - that's why there are so many different mutations out there, and everyone is different. What works for some, does not work for all - so don't read and follow everything you find on the internet.

I don't think this forum should be censored. I'm glad to take all the negativity with the positive. I'd hate to live in a CF bubble, were everything is positive, and there are no negatives. If that were the case, non of us would be dieing of CF.
 
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thelizardqueen

New member
Here's the thing. You say you're tired of all the negativity? - Last time I checked CF wasn't a positive condition. CF has both positive and negative points to the disease. If you see something you don't agree with, or don't want to read - then don't read it. Death is a perfectly normal and natural thing to talk about. People don't come on here just to spout positive things, we also come on here when we're feeling down, and need to vent. That is the whole point of a forum - everyone has a difference of opinion.

Who ever said that people are supposed to listen to everything they read on the internet? - if you don't want to read about "eating low calorie healthy food, go off antibiotics because they're bad and cause resistance, play with toys at the CF clinic while sitting in a germy cesspool of a hot tub with a group lf people who have cepacia." don't read it, don't follow it. Everyone is different when it comes to how they treat they're health, and what works for them - that's why there are so many different mutations out there, and everyone is different. What works for some, does not work for all - so don't read and follow everything you find on the internet.

I don't think this forum should be censored. I'm glad to take all the negativity with the positive. I'd hate to live in a CF bubble, were everything is positive, and there are no negatives. If that were the case, non of us would be dieing of CF.
 
J

JazzysMom

New member
This whole topic reminds me of one that took place when Win Ace (Allan) was around to have his input....oh to remember!
 
J

JazzysMom

New member
This whole topic reminds me of one that took place when Win Ace (Allan) was around to have his input....oh to remember!
 
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Faust

New member
Many CF's are jaded, and many of those CF's are angry, and many of those CF's are resigned to (and some are quite happy with this for whatever reason) a negative situation health wise/life wise. Notice how when you might try to help, there is almost always one person here where atleast on one level, basically rejects your help, regardless what it is? Whatever floats your boat, this is the internet and all...But people like that in real life, if they were my friends, i'd smack them good.
 
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Faust

New member
Many CF's are jaded, and many of those CF's are angry, and many of those CF's are resigned to (and some are quite happy with this for whatever reason) a negative situation health wise/life wise. Notice how when you might try to help, there is almost always one person here where atleast on one level, basically rejects your help, regardless what it is? Whatever floats your boat, this is the internet and all...But people like that in real life, if they were my friends, i'd smack them good.
 
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Emily65Roses

New member
<blockquote>Quote<br><hr><i>Originally posted by: <b>Anonymous</b></i><br> sitting in a germy cesspool of a hot tub with a group lf people who have cepacia.<hr></blockquote>
Bit of an exaggeration, don't you think? I'm not going to avoid hot tubs, and I'm not going to avoid CFers, but I'm not going to start kissing others with cepacia. I may be much more laid back than you, but that doesn't make me stupid or unreasonable.

As for the rest of it, I have to go with Allie. I guarantee that I'm one of the main people that drives you nuts. And that's fine. There are things that will bother everyone about me, and about everyone else.

I know a lot of people here aren't going to believe me on this, or buy it, but I'm not a negative person. So I address the negative topics in life... that doesn't mean I'm negative. It means I'm realistic. Just because you ignore something does <b>not</b> make it go away. So I prefer to put it out there and talk about it. Makes more sense than ignoring it and pretending it doesn't exist.

If you want to ignore the topic and pretend CF doesn't kill people, then that's your decision. Like others have said... don't open the threads that say "death" in the title. Pretty simple, I think.
 
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Emily65Roses

New member
<blockquote>Quote<br><hr><i>Originally posted by: <b>Anonymous</b></i><br> sitting in a germy cesspool of a hot tub with a group lf people who have cepacia.<hr></blockquote>
Bit of an exaggeration, don't you think? I'm not going to avoid hot tubs, and I'm not going to avoid CFers, but I'm not going to start kissing others with cepacia. I may be much more laid back than you, but that doesn't make me stupid or unreasonable.

As for the rest of it, I have to go with Allie. I guarantee that I'm one of the main people that drives you nuts. And that's fine. There are things that will bother everyone about me, and about everyone else.

I know a lot of people here aren't going to believe me on this, or buy it, but I'm not a negative person. So I address the negative topics in life... that doesn't mean I'm negative. It means I'm realistic. Just because you ignore something does <b>not</b> make it go away. So I prefer to put it out there and talk about it. Makes more sense than ignoring it and pretending it doesn't exist.

If you want to ignore the topic and pretend CF doesn't kill people, then that's your decision. Like others have said... don't open the threads that say "death" in the title. Pretty simple, I think.
 
W

wallflower

New member
I totally agree with Liza - the tone of voice is so hard to tell sometimes with post. My grandma says I have "dry humor" - in emails that doesn't always work <img src="i/expressions/face-icon-small-smile.gif" border="0">

I don't have a problem with topics posted - things change as our cf gets worse or better, or our lives change outside of cf. While some topics may not seem pleasing to everyone, it is comforting to those who do and are experiencing the same situations/thoughts.

I think to just tell people to be smart enough to assume what is in a post and not read it is not always appropiate. I would have missed a lot of great topics (and jokes) if I had done that.

I will say that there are a couple of posters that seem to sour things from time to time, but I've learned to just skim over their posts. We are who we are, and sometimes emotions are a big part of that. There is a difference between being inappropiate and rude, and again, that line differs for everyone. People just need to be aware that when they enter a forum or chatroom, they have to be prepared for what they might find.
 
W

wallflower

New member
I totally agree with Liza - the tone of voice is so hard to tell sometimes with post. My grandma says I have "dry humor" - in emails that doesn't always work <img src="i/expressions/face-icon-small-smile.gif" border="0">

I don't have a problem with topics posted - things change as our cf gets worse or better, or our lives change outside of cf. While some topics may not seem pleasing to everyone, it is comforting to those who do and are experiencing the same situations/thoughts.

I think to just tell people to be smart enough to assume what is in a post and not read it is not always appropiate. I would have missed a lot of great topics (and jokes) if I had done that.

I will say that there are a couple of posters that seem to sour things from time to time, but I've learned to just skim over their posts. We are who we are, and sometimes emotions are a big part of that. There is a difference between being inappropiate and rude, and again, that line differs for everyone. People just need to be aware that when they enter a forum or chatroom, they have to be prepared for what they might find.
 
A

anonymous

New member
Controversy drives this site and mostly all message boards are exciting when others have different view points. love, love, love this message board and the creator of this site.


I think the comment from Anonymous about hot tubs and toys is rather harsh. But this person obviously is not a nice person to pass a comment like this. I even doubt that she has a child with CF. Talk about negative. geez calling upon Sean to get us out of this mess.

Risa
 
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anonymous

New member
Controversy drives this site and mostly all message boards are exciting when others have different view points. love, love, love this message board and the creator of this site.


I think the comment from Anonymous about hot tubs and toys is rather harsh. But this person obviously is not a nice person to pass a comment like this. I even doubt that she has a child with CF. Talk about negative. geez calling upon Sean to get us out of this mess.

Risa
 
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Faust

New member
<blockquote>Quote<br><hr><i>Originally posted by: <b>wallflower</b></i><br>


and again, that line differs for everyone. <hr></blockquote>


I agree. For instance look at MY line:


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Now, most other peoples "line":


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F

Faust

New member
<blockquote>Quote<br><hr><i>Originally posted by: <b>wallflower</b></i><br>


and again, that line differs for everyone. <hr></blockquote>


I agree. For instance look at MY line:


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Now, most other peoples "line":


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