Help and support

M

my65roses4me

New member
As I sit here writting this I am very upset.

When I first came to this website I was looking for info and researching a few things about cf. I came her and got warm welcomes and everyone seemed so supportive and helpful even the ones that may not agree with the things I do or say.

Lately I have been saddened by the things that have been going on here. There is sooo much doom and gloom about cf here. I am not talking about the people here that are actually having problems or have had dying loved ones. Those are facts and that why we are here, to give support to those in need.

I am talking about when new or oldies come here for support or ideas and people are quick to tear them down. Quick to make sure they know that the end results are that they or their loved one is going to die of CF. While this is a fact I think that by them reading about others death on this website they are well aware of death and its possiblities without the constant reminder!!!

I as a cfer, try to live my life to the fullest and try to live a semi normal life. My mother made sure that I knew I had cf, growing up, but also made sure that I was aware that it is possible to live out my dreams. I was taught how to take care of myself and that my life will be cut short some day, by her and I love her for that. So I am well aware of my outcome and I have never felt so doom and gloomed about my cf until I came here.

I think that is sad!! The way some choose to live their life, is what it is, but you dont have to shove your negativity in my life or others.
This thread is just <b><u>ONE</u></b> example of what I am talking about: <a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=1150&threadid=20043&enterthread=y">http://forums.cysticfibrosis.c...id=20043&enterthread=y</a>

Since coming here I have always stayed out of the debates because it didn't really matter to me but it has gone to far for too long now and has become personal to me. I know there is a possiblity that this post will be censored or even deleted and thats ok. At least I have said what I have to say.

My message is:
Lets help others by being helpful not negative because we are all aware that we are going to die some day but why live life as if its tomorrow when we dont even know it will be!!!!!
<u><b>Live life to the fullest! Live life one day at a time <u>but plan for the future</u>!!!</b></u>
 
M

my65roses4me

New member
As I sit here writting this I am very upset.

When I first came to this website I was looking for info and researching a few things about cf. I came her and got warm welcomes and everyone seemed so supportive and helpful even the ones that may not agree with the things I do or say.

Lately I have been saddened by the things that have been going on here. There is sooo much doom and gloom about cf here. I am not talking about the people here that are actually having problems or have had dying loved ones. Those are facts and that why we are here, to give support to those in need.

I am talking about when new or oldies come here for support or ideas and people are quick to tear them down. Quick to make sure they know that the end results are that they or their loved one is going to die of CF. While this is a fact I think that by them reading about others death on this website they are well aware of death and its possiblities without the constant reminder!!!

I as a cfer, try to live my life to the fullest and try to live a semi normal life. My mother made sure that I knew I had cf, growing up, but also made sure that I was aware that it is possible to live out my dreams. I was taught how to take care of myself and that my life will be cut short some day, by her and I love her for that. So I am well aware of my outcome and I have never felt so doom and gloomed about my cf until I came here.

I think that is sad!! The way some choose to live their life, is what it is, but you dont have to shove your negativity in my life or others.
This thread is just <b><u>ONE</u></b> example of what I am talking about: <a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=1150&threadid=20043&enterthread=y">http://forums.cysticfibrosis.c...id=20043&enterthread=y</a>

Since coming here I have always stayed out of the debates because it didn't really matter to me but it has gone to far for too long now and has become personal to me. I know there is a possiblity that this post will be censored or even deleted and thats ok. At least I have said what I have to say.

My message is:
Lets help others by being helpful not negative because we are all aware that we are going to die some day but why live life as if its tomorrow when we dont even know it will be!!!!!
<u><b>Live life to the fullest! Live life one day at a time <u>but plan for the future</u>!!!</b></u>
 
M

my65roses4me

New member
As I sit here writting this I am very upset.

When I first came to this website I was looking for info and researching a few things about cf. I came her and got warm welcomes and everyone seemed so supportive and helpful even the ones that may not agree with the things I do or say.

Lately I have been saddened by the things that have been going on here. There is sooo much doom and gloom about cf here. I am not talking about the people here that are actually having problems or have had dying loved ones. Those are facts and that why we are here, to give support to those in need.

I am talking about when new or oldies come here for support or ideas and people are quick to tear them down. Quick to make sure they know that the end results are that they or their loved one is going to die of CF. While this is a fact I think that by them reading about others death on this website they are well aware of death and its possiblities without the constant reminder!!!

I as a cfer, try to live my life to the fullest and try to live a semi normal life. My mother made sure that I knew I had cf, growing up, but also made sure that I was aware that it is possible to live out my dreams. I was taught how to take care of myself and that my life will be cut short some day, by her and I love her for that. So I am well aware of my outcome and I have never felt so doom and gloomed about my cf until I came here.

I think that is sad!! The way some choose to live their life, is what it is, but you dont have to shove your negativity in my life or others.
This thread is just <b><u>ONE</u></b> example of what I am talking about: <a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=1150&threadid=20043&enterthread=y">http://forums.cysticfibrosis.c...id=20043&enterthread=y</a>

Since coming here I have always stayed out of the debates because it didn't really matter to me but it has gone to far for too long now and has become personal to me. I know there is a possiblity that this post will be censored or even deleted and thats ok. At least I have said what I have to say.

My message is:
Lets help others by being helpful not negative because we are all aware that we are going to die some day but why live life as if its tomorrow when we dont even know it will be!!!!!
<u><b>Live life to the fullest! Live life one day at a time <u>but plan for the future</u>!!!</b></u>
 
M

my65roses4me

New member
As I sit here writting this I am very upset.

When I first came to this website I was looking for info and researching a few things about cf. I came her and got warm welcomes and everyone seemed so supportive and helpful even the ones that may not agree with the things I do or say.

Lately I have been saddened by the things that have been going on here. There is sooo much doom and gloom about cf here. I am not talking about the people here that are actually having problems or have had dying loved ones. Those are facts and that why we are here, to give support to those in need.

I am talking about when new or oldies come here for support or ideas and people are quick to tear them down. Quick to make sure they know that the end results are that they or their loved one is going to die of CF. While this is a fact I think that by them reading about others death on this website they are well aware of death and its possiblities without the constant reminder!!!

I as a cfer, try to live my life to the fullest and try to live a semi normal life. My mother made sure that I knew I had cf, growing up, but also made sure that I was aware that it is possible to live out my dreams. I was taught how to take care of myself and that my life will be cut short some day, by her and I love her for that. So I am well aware of my outcome and I have never felt so doom and gloomed about my cf until I came here.

I think that is sad!! The way some choose to live their life, is what it is, but you dont have to shove your negativity in my life or others.
This thread is just <b><u>ONE</u></b> example of what I am talking about: <a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=1150&threadid=20043&enterthread=y">http://forums.cysticfibrosis.c...id=20043&enterthread=y</a>

Since coming here I have always stayed out of the debates because it didn't really matter to me but it has gone to far for too long now and has become personal to me. I know there is a possiblity that this post will be censored or even deleted and thats ok. At least I have said what I have to say.

My message is:
Lets help others by being helpful not negative because we are all aware that we are going to die some day but why live life as if its tomorrow when we dont even know it will be!!!!!
<u><b>Live life to the fullest! Live life one day at a time <u>but plan for the future</u>!!!</b></u>
 
M

my65roses4me

New member
As I sit here writting this I am very upset.

When I first came to this website I was looking for info and researching a few things about cf. I came her and got warm welcomes and everyone seemed so supportive and helpful even the ones that may not agree with the things I do or say.

Lately I have been saddened by the things that have been going on here. There is sooo much doom and gloom about cf here. I am not talking about the people here that are actually having problems or have had dying loved ones. Those are facts and that why we are here, to give support to those in need.

I am talking about when new or oldies come here for support or ideas and people are quick to tear them down. Quick to make sure they know that the end results are that they or their loved one is going to die of CF. While this is a fact I think that by them reading about others death on this website they are well aware of death and its possiblities without the constant reminder!!!

I as a cfer, try to live my life to the fullest and try to live a semi normal life. My mother made sure that I knew I had cf, growing up, but also made sure that I was aware that it is possible to live out my dreams. I was taught how to take care of myself and that my life will be cut short some day, by her and I love her for that. So I am well aware of my outcome and I have never felt so doom and gloomed about my cf until I came here.

I think that is sad!! The way some choose to live their life, is what it is, but you dont have to shove your negativity in my life or others.
This thread is just <b><u>ONE</u></b> example of what I am talking about: <a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=1150&threadid=20043&enterthread=y">http://forums.cysticfibrosis.c...id=20043&enterthread=y</a>

Since coming here I have always stayed out of the debates because it didn't really matter to me but it has gone to far for too long now and has become personal to me. I know there is a possiblity that this post will be censored or even deleted and thats ok. At least I have said what I have to say.

My message is:
Lets help others by being helpful not negative because we are all aware that we are going to die some day but why live life as if its tomorrow when we dont even know it will be!!!!!
<u><b>Live life to the fullest! Live life one day at a time <u>but plan for the future</u>!!!</b></u>
 
M

my65roses4me

New member
As I sit here writting this I am very upset.

When I first came to this website I was looking for info and researching a few things about cf. I came her and got warm welcomes and everyone seemed so supportive and helpful even the ones that may not agree with the things I do or say.

Lately I have been saddened by the things that have been going on here. There is sooo much doom and gloom about cf here. I am not talking about the people here that are actually having problems or have had dying loved ones. Those are facts and that why we are here, to give support to those in need.

I am talking about when new or oldies come here for support or ideas and people are quick to tear them down. Quick to make sure they know that the end results are that they or their loved one is going to die of CF. While this is a fact I think that by them reading about others death on this website they are well aware of death and its possiblities without the constant reminder!!!

I as a cfer, try to live my life to the fullest and try to live a semi normal life. My mother made sure that I knew I had cf, growing up, but also made sure that I was aware that it is possible to live out my dreams. I was taught how to take care of myself and that my life will be cut short some day, by her and I love her for that. So I am well aware of my outcome and I have never felt so doom and gloomed about my cf until I came here.

I think that is sad!! The way some choose to live their life, is what it is, but you dont have to shove your negativity in my life or others.
This thread is just <b><u>ONE</u></b> example of what I am talking about: <a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=1150&threadid=20043&enterthread=y">http://forums.cysticfibrosis.c...id=20043&enterthread=y</a>

Since coming here I have always stayed out of the debates because it didn't really matter to me but it has gone to far for too long now and has become personal to me. I know there is a possiblity that this post will be censored or even deleted and thats ok. At least I have said what I have to say.

My message is:
Lets help others by being helpful not negative because we are all aware that we are going to die some day but why live life as if its tomorrow when we dont even know it will be!!!!!
<u><b>Live life to the fullest! Live life one day at a time <u>but plan for the future</u>!!!</b></u>
 
L

Lilith

New member
I really don't understand what you mean by "doom and gloom" and having death shoved down throats. I haven't seen anything of the sort here recently, except for the post about Frankie's demise, which I appreciate really. I don't enjoy reading about another CFer that lost the battle, but it is nice to know what happened to the person and give support to those suffering their loss.

I think some people come on here in denial and need to be told the reality. Hell, I've heard some people say that when diagnosed, the doctors shrugged CF off like it was no big deal! In these such cases, I believe that yes, reality needs to play a part, and that is that death is the end result of CF. However, death is a part of EVERYTHING, so I don't see why its so taboo. For some, talking about it is a relief, not a stresser. I for one talk about death often, not because I'm afraid of it or I'm morbid, but because I enjoy intellectual conversation. Allowing someone to talk about death is a form of support, you know.

As for all the bashing of other people's ways of life...yeah, I agree, its stupid. But some people think they know better than everyone else, and unfortunately, I don't see it changing. That's just life.

Edited to add: Okay, I see the thread you're referring to. But here's the deal as I see it...

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

I came here looking for support from informed people. Saying that, with hopes of support, I was in a panic and terribly depressed. I called my boyfriend in tears almost every day for a week. "The forum people say we can't get married and can't have kids and only want to tell me about what it's going to be like when you are dying and then die." Knowing the result that had on me, it's pretty clear I didn't get the support I was looking for.</end quote></div>

Okay, so maybe she got more than she bargained for. HOWEVER, her question was, "Am I just in denial to think that while CF is a big part of our life and our decisions, it's not going to shape the choices we make?" The answer is YES, no matter how you slice it. CF will indeed shape some of their choices, and the examples she got were true. Now, perhaps she wasn't looking for all that much info, but with a question like that, people are going to give experiences as examples, and not all of them positive. No one tried to hurt her feelings, as I saw it, but simply give her a glimpse of what life may entail. I really don't see anything wrong with that. In your own quote you say, "Live life one day at a time but plan for the future!!!" Being informed about marriage, kids, and yes, even death, are planning for the future.

Not trying to bash you, don't think that. I'm just giving my perspective on the situation as someone who wasn't involved in this particular topic.
 
L

Lilith

New member
I really don't understand what you mean by "doom and gloom" and having death shoved down throats. I haven't seen anything of the sort here recently, except for the post about Frankie's demise, which I appreciate really. I don't enjoy reading about another CFer that lost the battle, but it is nice to know what happened to the person and give support to those suffering their loss.

I think some people come on here in denial and need to be told the reality. Hell, I've heard some people say that when diagnosed, the doctors shrugged CF off like it was no big deal! In these such cases, I believe that yes, reality needs to play a part, and that is that death is the end result of CF. However, death is a part of EVERYTHING, so I don't see why its so taboo. For some, talking about it is a relief, not a stresser. I for one talk about death often, not because I'm afraid of it or I'm morbid, but because I enjoy intellectual conversation. Allowing someone to talk about death is a form of support, you know.

As for all the bashing of other people's ways of life...yeah, I agree, its stupid. But some people think they know better than everyone else, and unfortunately, I don't see it changing. That's just life.

Edited to add: Okay, I see the thread you're referring to. But here's the deal as I see it...

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

I came here looking for support from informed people. Saying that, with hopes of support, I was in a panic and terribly depressed. I called my boyfriend in tears almost every day for a week. "The forum people say we can't get married and can't have kids and only want to tell me about what it's going to be like when you are dying and then die." Knowing the result that had on me, it's pretty clear I didn't get the support I was looking for.</end quote></div>

Okay, so maybe she got more than she bargained for. HOWEVER, her question was, "Am I just in denial to think that while CF is a big part of our life and our decisions, it's not going to shape the choices we make?" The answer is YES, no matter how you slice it. CF will indeed shape some of their choices, and the examples she got were true. Now, perhaps she wasn't looking for all that much info, but with a question like that, people are going to give experiences as examples, and not all of them positive. No one tried to hurt her feelings, as I saw it, but simply give her a glimpse of what life may entail. I really don't see anything wrong with that. In your own quote you say, "Live life one day at a time but plan for the future!!!" Being informed about marriage, kids, and yes, even death, are planning for the future.

Not trying to bash you, don't think that. I'm just giving my perspective on the situation as someone who wasn't involved in this particular topic.
 
L

Lilith

New member
I really don't understand what you mean by "doom and gloom" and having death shoved down throats. I haven't seen anything of the sort here recently, except for the post about Frankie's demise, which I appreciate really. I don't enjoy reading about another CFer that lost the battle, but it is nice to know what happened to the person and give support to those suffering their loss.

I think some people come on here in denial and need to be told the reality. Hell, I've heard some people say that when diagnosed, the doctors shrugged CF off like it was no big deal! In these such cases, I believe that yes, reality needs to play a part, and that is that death is the end result of CF. However, death is a part of EVERYTHING, so I don't see why its so taboo. For some, talking about it is a relief, not a stresser. I for one talk about death often, not because I'm afraid of it or I'm morbid, but because I enjoy intellectual conversation. Allowing someone to talk about death is a form of support, you know.

As for all the bashing of other people's ways of life...yeah, I agree, its stupid. But some people think they know better than everyone else, and unfortunately, I don't see it changing. That's just life.

Edited to add: Okay, I see the thread you're referring to. But here's the deal as I see it...

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

I came here looking for support from informed people. Saying that, with hopes of support, I was in a panic and terribly depressed. I called my boyfriend in tears almost every day for a week. "The forum people say we can't get married and can't have kids and only want to tell me about what it's going to be like when you are dying and then die." Knowing the result that had on me, it's pretty clear I didn't get the support I was looking for.</end quote></div>

Okay, so maybe she got more than she bargained for. HOWEVER, her question was, "Am I just in denial to think that while CF is a big part of our life and our decisions, it's not going to shape the choices we make?" The answer is YES, no matter how you slice it. CF will indeed shape some of their choices, and the examples she got were true. Now, perhaps she wasn't looking for all that much info, but with a question like that, people are going to give experiences as examples, and not all of them positive. No one tried to hurt her feelings, as I saw it, but simply give her a glimpse of what life may entail. I really don't see anything wrong with that. In your own quote you say, "Live life one day at a time but plan for the future!!!" Being informed about marriage, kids, and yes, even death, are planning for the future.

Not trying to bash you, don't think that. I'm just giving my perspective on the situation as someone who wasn't involved in this particular topic.
 
L

Lilith

New member
I really don't understand what you mean by "doom and gloom" and having death shoved down throats. I haven't seen anything of the sort here recently, except for the post about Frankie's demise, which I appreciate really. I don't enjoy reading about another CFer that lost the battle, but it is nice to know what happened to the person and give support to those suffering their loss.

I think some people come on here in denial and need to be told the reality. Hell, I've heard some people say that when diagnosed, the doctors shrugged CF off like it was no big deal! In these such cases, I believe that yes, reality needs to play a part, and that is that death is the end result of CF. However, death is a part of EVERYTHING, so I don't see why its so taboo. For some, talking about it is a relief, not a stresser. I for one talk about death often, not because I'm afraid of it or I'm morbid, but because I enjoy intellectual conversation. Allowing someone to talk about death is a form of support, you know.

As for all the bashing of other people's ways of life...yeah, I agree, its stupid. But some people think they know better than everyone else, and unfortunately, I don't see it changing. That's just life.

Edited to add: Okay, I see the thread you're referring to. But here's the deal as I see it...

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

I came here looking for support from informed people. Saying that, with hopes of support, I was in a panic and terribly depressed. I called my boyfriend in tears almost every day for a week. "The forum people say we can't get married and can't have kids and only want to tell me about what it's going to be like when you are dying and then die." Knowing the result that had on me, it's pretty clear I didn't get the support I was looking for.</end quote></div>

Okay, so maybe she got more than she bargained for. HOWEVER, her question was, "Am I just in denial to think that while CF is a big part of our life and our decisions, it's not going to shape the choices we make?" The answer is YES, no matter how you slice it. CF will indeed shape some of their choices, and the examples she got were true. Now, perhaps she wasn't looking for all that much info, but with a question like that, people are going to give experiences as examples, and not all of them positive. No one tried to hurt her feelings, as I saw it, but simply give her a glimpse of what life may entail. I really don't see anything wrong with that. In your own quote you say, "Live life one day at a time but plan for the future!!!" Being informed about marriage, kids, and yes, even death, are planning for the future.

Not trying to bash you, don't think that. I'm just giving my perspective on the situation as someone who wasn't involved in this particular topic.
 
L

Lilith

New member
I really don't understand what you mean by "doom and gloom" and having death shoved down throats. I haven't seen anything of the sort here recently, except for the post about Frankie's demise, which I appreciate really. I don't enjoy reading about another CFer that lost the battle, but it is nice to know what happened to the person and give support to those suffering their loss.

I think some people come on here in denial and need to be told the reality. Hell, I've heard some people say that when diagnosed, the doctors shrugged CF off like it was no big deal! In these such cases, I believe that yes, reality needs to play a part, and that is that death is the end result of CF. However, death is a part of EVERYTHING, so I don't see why its so taboo. For some, talking about it is a relief, not a stresser. I for one talk about death often, not because I'm afraid of it or I'm morbid, but because I enjoy intellectual conversation. Allowing someone to talk about death is a form of support, you know.

As for all the bashing of other people's ways of life...yeah, I agree, its stupid. But some people think they know better than everyone else, and unfortunately, I don't see it changing. That's just life.

Edited to add: Okay, I see the thread you're referring to. But here's the deal as I see it...

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

I came here looking for support from informed people. Saying that, with hopes of support, I was in a panic and terribly depressed. I called my boyfriend in tears almost every day for a week. "The forum people say we can't get married and can't have kids and only want to tell me about what it's going to be like when you are dying and then die." Knowing the result that had on me, it's pretty clear I didn't get the support I was looking for.</end quote>

Okay, so maybe she got more than she bargained for. HOWEVER, her question was, "Am I just in denial to think that while CF is a big part of our life and our decisions, it's not going to shape the choices we make?" The answer is YES, no matter how you slice it. CF will indeed shape some of their choices, and the examples she got were true. Now, perhaps she wasn't looking for all that much info, but with a question like that, people are going to give experiences as examples, and not all of them positive. No one tried to hurt her feelings, as I saw it, but simply give her a glimpse of what life may entail. I really don't see anything wrong with that. In your own quote you say, "Live life one day at a time but plan for the future!!!" Being informed about marriage, kids, and yes, even death, are planning for the future.

Not trying to bash you, don't think that. I'm just giving my perspective on the situation as someone who wasn't involved in this particular topic.
 
L

Lilith

New member
I really don't understand what you mean by "doom and gloom" and having death shoved down throats. I haven't seen anything of the sort here recently, except for the post about Frankie's demise, which I appreciate really. I don't enjoy reading about another CFer that lost the battle, but it is nice to know what happened to the person and give support to those suffering their loss.

I think some people come on here in denial and need to be told the reality. Hell, I've heard some people say that when diagnosed, the doctors shrugged CF off like it was no big deal! In these such cases, I believe that yes, reality needs to play a part, and that is that death is the end result of CF. However, death is a part of EVERYTHING, so I don't see why its so taboo. For some, talking about it is a relief, not a stresser. I for one talk about death often, not because I'm afraid of it or I'm morbid, but because I enjoy intellectual conversation. Allowing someone to talk about death is a form of support, you know.

As for all the bashing of other people's ways of life...yeah, I agree, its stupid. But some people think they know better than everyone else, and unfortunately, I don't see it changing. That's just life.

Edited to add: Okay, I see the thread you're referring to. But here's the deal as I see it...

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

I came here looking for support from informed people. Saying that, with hopes of support, I was in a panic and terribly depressed. I called my boyfriend in tears almost every day for a week. "The forum people say we can't get married and can't have kids and only want to tell me about what it's going to be like when you are dying and then die." Knowing the result that had on me, it's pretty clear I didn't get the support I was looking for.</end quote>

Okay, so maybe she got more than she bargained for. HOWEVER, her question was, "Am I just in denial to think that while CF is a big part of our life and our decisions, it's not going to shape the choices we make?" The answer is YES, no matter how you slice it. CF will indeed shape some of their choices, and the examples she got were true. Now, perhaps she wasn't looking for all that much info, but with a question like that, people are going to give experiences as examples, and not all of them positive. No one tried to hurt her feelings, as I saw it, but simply give her a glimpse of what life may entail. I really don't see anything wrong with that. In your own quote you say, "Live life one day at a time but plan for the future!!!" Being informed about marriage, kids, and yes, even death, are planning for the future.

Not trying to bash you, don't think that. I'm just giving my perspective on the situation as someone who wasn't involved in this particular topic.
 
N

NoExcuses

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>my65roses4me</b></i>

While this is a fact I think that by them reading about others death on this website they are well aware of death and its possiblities without the constant reminder!!!
</end quote></div>


So many parents on this site (not all) think that everyone else suffers with this disease, but their kid will be the exception. The one to live forever; to never suffer; to never have to deal with CF like everyone else inevitably has.

So I'm going to strongly disagree with your comment. Some parents on this site have even admitted to this - the parents who are honest with themselves and others.

And it's only when one deals with REALITY that proper choices can be made and one can be proactive with treatment. Those who think that "it can't happen to my kid" are often those who aren't as proactive and tend to be more lax about treatment.


<div class="FTQUOTE"><begin quote>So I am well aware of my outcome and I have never felt so doom and gloomed about my cf until I came here. </end quote></div>


Maybe this isn't the best site for you. I have a feeling things aren't going to change just because you don't like what you're reading.

<div class="FTQUOTE"><begin quote>

This thread is just <b><u>ONE</u></b> example of what I am talking about: <a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=1150&threadid=20043&enterthread=y">http://forums.cysticfibrosis.c...id=20043&enterthread=y</a>

</end quote></div>


I think this is a weak, weak example. This person asked if she was in denial. People answered the question.

Is there any personal responsibility anymore? How about "you asked the question, if you can't handle the answers, don't ask the question!!"

And who goes and makes decisions about their life solely based on what they read here? That's a bit bizarre to me.

"so and so on this board said i can't get my graduate degree because it would be too hard on my health. i'm going to cry for weeks on end because now i can't do it."

No way man. I could ask for advice or other people's experiences with graduate degrees. But making a decision about what I can and cannot do based solely on this site? That's a little scary...



<div class="FTQUOTE"><begin quote> Lets help others by being helpful not negative</end quote></div>

"negative" is so subjective.

many people talk in facts on this site.

to those who are more sensitive or tend to freak out easily, they may take facts as "negative."

So to request that people avoid being negative, in my opinion, is useless. There's always going to be a few people who can't handle the truth.
 
N

NoExcuses

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>my65roses4me</b></i>

While this is a fact I think that by them reading about others death on this website they are well aware of death and its possiblities without the constant reminder!!!
</end quote></div>


So many parents on this site (not all) think that everyone else suffers with this disease, but their kid will be the exception. The one to live forever; to never suffer; to never have to deal with CF like everyone else inevitably has.

So I'm going to strongly disagree with your comment. Some parents on this site have even admitted to this - the parents who are honest with themselves and others.

And it's only when one deals with REALITY that proper choices can be made and one can be proactive with treatment. Those who think that "it can't happen to my kid" are often those who aren't as proactive and tend to be more lax about treatment.


<div class="FTQUOTE"><begin quote>So I am well aware of my outcome and I have never felt so doom and gloomed about my cf until I came here. </end quote></div>


Maybe this isn't the best site for you. I have a feeling things aren't going to change just because you don't like what you're reading.

<div class="FTQUOTE"><begin quote>

This thread is just <b><u>ONE</u></b> example of what I am talking about: <a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=1150&threadid=20043&enterthread=y">http://forums.cysticfibrosis.c...id=20043&enterthread=y</a>

</end quote></div>


I think this is a weak, weak example. This person asked if she was in denial. People answered the question.

Is there any personal responsibility anymore? How about "you asked the question, if you can't handle the answers, don't ask the question!!"

And who goes and makes decisions about their life solely based on what they read here? That's a bit bizarre to me.

"so and so on this board said i can't get my graduate degree because it would be too hard on my health. i'm going to cry for weeks on end because now i can't do it."

No way man. I could ask for advice or other people's experiences with graduate degrees. But making a decision about what I can and cannot do based solely on this site? That's a little scary...



<div class="FTQUOTE"><begin quote> Lets help others by being helpful not negative</end quote></div>

"negative" is so subjective.

many people talk in facts on this site.

to those who are more sensitive or tend to freak out easily, they may take facts as "negative."

So to request that people avoid being negative, in my opinion, is useless. There's always going to be a few people who can't handle the truth.
 
N

NoExcuses

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>my65roses4me</b></i>

While this is a fact I think that by them reading about others death on this website they are well aware of death and its possiblities without the constant reminder!!!
</end quote></div>


So many parents on this site (not all) think that everyone else suffers with this disease, but their kid will be the exception. The one to live forever; to never suffer; to never have to deal with CF like everyone else inevitably has.

So I'm going to strongly disagree with your comment. Some parents on this site have even admitted to this - the parents who are honest with themselves and others.

And it's only when one deals with REALITY that proper choices can be made and one can be proactive with treatment. Those who think that "it can't happen to my kid" are often those who aren't as proactive and tend to be more lax about treatment.


<div class="FTQUOTE"><begin quote>So I am well aware of my outcome and I have never felt so doom and gloomed about my cf until I came here. </end quote></div>


Maybe this isn't the best site for you. I have a feeling things aren't going to change just because you don't like what you're reading.

<div class="FTQUOTE"><begin quote>

This thread is just <b><u>ONE</u></b> example of what I am talking about: <a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=1150&threadid=20043&enterthread=y">http://forums.cysticfibrosis.c...id=20043&enterthread=y</a>

</end quote></div>


I think this is a weak, weak example. This person asked if she was in denial. People answered the question.

Is there any personal responsibility anymore? How about "you asked the question, if you can't handle the answers, don't ask the question!!"

And who goes and makes decisions about their life solely based on what they read here? That's a bit bizarre to me.

"so and so on this board said i can't get my graduate degree because it would be too hard on my health. i'm going to cry for weeks on end because now i can't do it."

No way man. I could ask for advice or other people's experiences with graduate degrees. But making a decision about what I can and cannot do based solely on this site? That's a little scary...



<div class="FTQUOTE"><begin quote> Lets help others by being helpful not negative</end quote></div>

"negative" is so subjective.

many people talk in facts on this site.

to those who are more sensitive or tend to freak out easily, they may take facts as "negative."

So to request that people avoid being negative, in my opinion, is useless. There's always going to be a few people who can't handle the truth.
 
N

NoExcuses

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>my65roses4me</b></i>

While this is a fact I think that by them reading about others death on this website they are well aware of death and its possiblities without the constant reminder!!!
</end quote></div>


So many parents on this site (not all) think that everyone else suffers with this disease, but their kid will be the exception. The one to live forever; to never suffer; to never have to deal with CF like everyone else inevitably has.

So I'm going to strongly disagree with your comment. Some parents on this site have even admitted to this - the parents who are honest with themselves and others.

And it's only when one deals with REALITY that proper choices can be made and one can be proactive with treatment. Those who think that "it can't happen to my kid" are often those who aren't as proactive and tend to be more lax about treatment.


<div class="FTQUOTE"><begin quote>So I am well aware of my outcome and I have never felt so doom and gloomed about my cf until I came here. </end quote></div>


Maybe this isn't the best site for you. I have a feeling things aren't going to change just because you don't like what you're reading.

<div class="FTQUOTE"><begin quote>

This thread is just <b><u>ONE</u></b> example of what I am talking about: <a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=1150&threadid=20043&enterthread=y">http://forums.cysticfibrosis.c...id=20043&enterthread=y</a>

</end quote></div>


I think this is a weak, weak example. This person asked if she was in denial. People answered the question.

Is there any personal responsibility anymore? How about "you asked the question, if you can't handle the answers, don't ask the question!!"

And who goes and makes decisions about their life solely based on what they read here? That's a bit bizarre to me.

"so and so on this board said i can't get my graduate degree because it would be too hard on my health. i'm going to cry for weeks on end because now i can't do it."

No way man. I could ask for advice or other people's experiences with graduate degrees. But making a decision about what I can and cannot do based solely on this site? That's a little scary...



<div class="FTQUOTE"><begin quote> Lets help others by being helpful not negative</end quote></div>

"negative" is so subjective.

many people talk in facts on this site.

to those who are more sensitive or tend to freak out easily, they may take facts as "negative."

So to request that people avoid being negative, in my opinion, is useless. There's always going to be a few people who can't handle the truth.
 
N

NoExcuses

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>my65roses4me</b></i>

While this is a fact I think that by them reading about others death on this website they are well aware of death and its possiblities without the constant reminder!!!
</end quote>


So many parents on this site (not all) think that everyone else suffers with this disease, but their kid will be the exception. The one to live forever; to never suffer; to never have to deal with CF like everyone else inevitably has.

So I'm going to strongly disagree with your comment. Some parents on this site have even admitted to this - the parents who are honest with themselves and others.

And it's only when one deals with REALITY that proper choices can be made and one can be proactive with treatment. Those who think that "it can't happen to my kid" are often those who aren't as proactive and tend to be more lax about treatment.


<div class="FTQUOTE"><begin quote>So I am well aware of my outcome and I have never felt so doom and gloomed about my cf until I came here. </end quote>


Maybe this isn't the best site for you. I have a feeling things aren't going to change just because you don't like what you're reading.

<div class="FTQUOTE"><begin quote>

This thread is just <b><u>ONE</u></b> example of what I am talking about: <a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=1150&threadid=20043&enterthread=y">http://forums.cysticfibrosis.c...id=20043&enterthread=y</a>

</end quote>


I think this is a weak, weak example. This person asked if she was in denial. People answered the question.

Is there any personal responsibility anymore? How about "you asked the question, if you can't handle the answers, don't ask the question!!"

And who goes and makes decisions about their life solely based on what they read here? That's a bit bizarre to me.

"so and so on this board said i can't get my graduate degree because it would be too hard on my health. i'm going to cry for weeks on end because now i can't do it."

No way man. I could ask for advice or other people's experiences with graduate degrees. But making a decision about what I can and cannot do based solely on this site? That's a little scary...



<div class="FTQUOTE"><begin quote> Lets help others by being helpful not negative</end quote>

"negative" is so subjective.

many people talk in facts on this site.

to those who are more sensitive or tend to freak out easily, they may take facts as "negative."

So to request that people avoid being negative, in my opinion, is useless. There's always going to be a few people who can't handle the truth.
 
N

NoExcuses

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>my65roses4me</b></i>

While this is a fact I think that by them reading about others death on this website they are well aware of death and its possiblities without the constant reminder!!!
</end quote>


So many parents on this site (not all) think that everyone else suffers with this disease, but their kid will be the exception. The one to live forever; to never suffer; to never have to deal with CF like everyone else inevitably has.

So I'm going to strongly disagree with your comment. Some parents on this site have even admitted to this - the parents who are honest with themselves and others.

And it's only when one deals with REALITY that proper choices can be made and one can be proactive with treatment. Those who think that "it can't happen to my kid" are often those who aren't as proactive and tend to be more lax about treatment.


<div class="FTQUOTE"><begin quote>So I am well aware of my outcome and I have never felt so doom and gloomed about my cf until I came here. </end quote>


Maybe this isn't the best site for you. I have a feeling things aren't going to change just because you don't like what you're reading.

<div class="FTQUOTE"><begin quote>

This thread is just <b><u>ONE</u></b> example of what I am talking about: <a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=1150&threadid=20043&enterthread=y">http://forums.cysticfibrosis.c...id=20043&enterthread=y</a>

</end quote>


I think this is a weak, weak example. This person asked if she was in denial. People answered the question.

Is there any personal responsibility anymore? How about "you asked the question, if you can't handle the answers, don't ask the question!!"

And who goes and makes decisions about their life solely based on what they read here? That's a bit bizarre to me.

"so and so on this board said i can't get my graduate degree because it would be too hard on my health. i'm going to cry for weeks on end because now i can't do it."

No way man. I could ask for advice or other people's experiences with graduate degrees. But making a decision about what I can and cannot do based solely on this site? That's a little scary...



<div class="FTQUOTE"><begin quote> Lets help others by being helpful not negative</end quote>

"negative" is so subjective.

many people talk in facts on this site.

to those who are more sensitive or tend to freak out easily, they may take facts as "negative."

So to request that people avoid being negative, in my opinion, is useless. There's always going to be a few people who can't handle the truth.
 
K

katyf13

New member
This site is great in a lot of ways. I truly love it but I take a lot of breaks from it. We got so much love and support when Mike was so sick (you can't get much worse than 14%) and through his transplant. I've learned a lot of facts and I have gotten to care for a great number of people I've never met!
The realty is, if you get a group of people together, in a forum or in real life, there are all types of personalities and all types of communication styles. There are a lot of people to learn from, but not necessarily people you would invite over for a slumber party. I think the majority of us are "hopeful realists", looking forward to the future, but living every moment in the present. We have good days and bad days. Supportive days and cranky days. When you start to feel overwhelmed and angry about a post, I suggest taking a break from the site for a few days or a week. When you come back, it will have blown over and you can jump back in. I know I get stressed out when I come to the site too much!
 
K

katyf13

New member
This site is great in a lot of ways. I truly love it but I take a lot of breaks from it. We got so much love and support when Mike was so sick (you can't get much worse than 14%) and through his transplant. I've learned a lot of facts and I have gotten to care for a great number of people I've never met!
The realty is, if you get a group of people together, in a forum or in real life, there are all types of personalities and all types of communication styles. There are a lot of people to learn from, but not necessarily people you would invite over for a slumber party. I think the majority of us are "hopeful realists", looking forward to the future, but living every moment in the present. We have good days and bad days. Supportive days and cranky days. When you start to feel overwhelmed and angry about a post, I suggest taking a break from the site for a few days or a week. When you come back, it will have blown over and you can jump back in. I know I get stressed out when I come to the site too much!
 
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