trying to empower, and not give limitations of terminal

[mic10467]

Claudette,

I never belittled any of the CFers that passed, that was something that you projected from what I was trying to say. Yeah, like I am going to blame every CFer that ever died and say it was there fault. What an ignorant comment and defensive comment. I live with CF, and I would never, ever, belittle a person that lived and fought with this disease. I am talking about the now and the future. I am not blaming, that was what you seem to pick up from what I said. I am saying to take responsibility for what you can change with the CF. Why is it that a person with CF cannot make any comments to parents about dealing with CF without receiving some kind of defensive attack. Why is it so important to make sure we label people as Terminal? This is a difficult issue among the CF world. What can we do to make our lives better, live longer, be happy with what lives we do have as CFers. Making suggestions or trying to help parents with CF deal with their children tends to end up with an angry response. Why is that? Do you seriously want to help your child deal better with life as a CFer. Why do you feel the need to attack me as a human being that lives with CF, when I wasn't even talking to you. I really don't get it.

Michelle

 

[mic10467]

Claudette,

I never belittled any of the CFers that passed, that was something that you projected from what I was trying to say. Yeah, like I am going to blame every CFer that ever died and say it was there fault. What an ignorant comment and defensive comment. I live with CF, and I would never, ever, belittle a person that lived and fought with this disease. I am talking about the now and the future. I am not blaming, that was what you seem to pick up from what I said. I am saying to take responsibility for what you can change with the CF. Why is it that a person with CF cannot make any comments to parents about dealing with CF without receiving some kind of defensive attack. Why is it so important to make sure we label people as Terminal? This is a difficult issue among the CF world. What can we do to make our lives better, live longer, be happy with what lives we do have as CFers. Making suggestions or trying to help parents with CF deal with their children tends to end up with an angry response. Why is that? Do you seriously want to help your child deal better with life as a CFer. Why do you feel the need to attack me as a human being that lives with CF, when I wasn't even talking to you. I really don't get it.

Michelle

 

[mic10467]

Claudette,

I never belittled any of the CFers that passed, that was something that you projected from what I was trying to say. Yeah, like I am going to blame every CFer that ever died and say it was there fault. What an ignorant comment and defensive comment. I live with CF, and I would never, ever, belittle a person that lived and fought with this disease. I am talking about the now and the future. I am not blaming, that was what you seem to pick up from what I said. I am saying to take responsibility for what you can change with the CF. Why is it that a person with CF cannot make any comments to parents about dealing with CF without receiving some kind of defensive attack. Why is it so important to make sure we label people as Terminal? This is a difficult issue among the CF world. What can we do to make our lives better, live longer, be happy with what lives we do have as CFers. Making suggestions or trying to help parents with CF deal with their children tends to end up with an angry response. Why is that? Do you seriously want to help your child deal better with life as a CFer. Why do you feel the need to attack me as a human being that lives with CF, when I wasn't even talking to you. I really don't get it.

Michelle

 

[Allie]

Claudette didn't attack you at all. From the statement that your brother took the medical literature as reality, since it is science, and so his health failed, it does sound like you are blaming sicker people for being that way, whether you meant it to or not. Which simply isn't true. Back when my husband was a child, he knew someone with CF whose parents never told him it was fatal. He died at 14, thinking it was an anomaly. Ry was told at 5 that CF was eventually fatal, and he lived a happy, good life until the age of 31. Knowing the truth and being depressed don't go hand in hand.

I think creating a new thread solely to lash out at Claudette was a bit uncalled for, and I'm not quite sure why you did it. But I hope you've calmed down and can see that she wasn't attacking you, just trying to make a point, as am I.

 

[Allie]

Claudette didn't attack you at all. From the statement that your brother took the medical literature as reality, since it is science, and so his health failed, it does sound like you are blaming sicker people for being that way, whether you meant it to or not. Which simply isn't true. Back when my husband was a child, he knew someone with CF whose parents never told him it was fatal. He died at 14, thinking it was an anomaly. Ry was told at 5 that CF was eventually fatal, and he lived a happy, good life until the age of 31. Knowing the truth and being depressed don't go hand in hand.

I think creating a new thread solely to lash out at Claudette was a bit uncalled for, and I'm not quite sure why you did it. But I hope you've calmed down and can see that she wasn't attacking you, just trying to make a point, as am I.

 

[Allie]

Claudette didn't attack you at all. From the statement that your brother took the medical literature as reality, since it is science, and so his health failed, it does sound like you are blaming sicker people for being that way, whether you meant it to or not. Which simply isn't true. Back when my husband was a child, he knew someone with CF whose parents never told him it was fatal. He died at 14, thinking it was an anomaly. Ry was told at 5 that CF was eventually fatal, and he lived a happy, good life until the age of 31. Knowing the truth and being depressed don't go hand in hand.

I think creating a new thread solely to lash out at Claudette was a bit uncalled for, and I'm not quite sure why you did it. But I hope you've calmed down and can see that she wasn't attacking you, just trying to make a point, as am I.

 

[NoExcuses]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>mic10467</b></i>

Why is it that a person with CF cannot make any comments to parents about dealing with CF without receiving some kind of defensive attack. </end quote></div>

i've wondered that point many times myself.

 

[NoExcuses]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>mic10467</b></i>

Why is it that a person with CF cannot make any comments to parents about dealing with CF without receiving some kind of defensive attack. </end quote></div>

i've wondered that point many times myself.

 

[NoExcuses]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>mic10467</b></i>

Why is it that a person with CF cannot make any comments to parents about dealing with CF without receiving some kind of defensive attack. </end quote></div>

i've wondered that point many times myself.

 

[anonymous]

I shall remain nameless as I never like to get involved in arguments on the site. I just wanted to say that I am a mother of a child with CF, and I value everyone's opinion, no matter what they've said. Maybe some I agree with more than others, but I respect everyone's opinion. I know in advance that parents of CFers and CFers themselves (or spouses) are probably going to have different answers. It's good to have different points of view. If I ask a question about a particular issue affecting my child, I want to hear from another parent who dealt with the same issue, as well as from a CFer (or spouse) who dealt with it themselves. But usually a parent of a child with CF, and a person who once was a child with CF, will have varying opinions.

 

[anonymous]

I shall remain nameless as I never like to get involved in arguments on the site. I just wanted to say that I am a mother of a child with CF, and I value everyone's opinion, no matter what they've said. Maybe some I agree with more than others, but I respect everyone's opinion. I know in advance that parents of CFers and CFers themselves (or spouses) are probably going to have different answers. It's good to have different points of view. If I ask a question about a particular issue affecting my child, I want to hear from another parent who dealt with the same issue, as well as from a CFer (or spouse) who dealt with it themselves. But usually a parent of a child with CF, and a person who once was a child with CF, will have varying opinions.

 

[anonymous]

I shall remain nameless as I never like to get involved in arguments on the site. I just wanted to say that I am a mother of a child with CF, and I value everyone's opinion, no matter what they've said. Maybe some I agree with more than others, but I respect everyone's opinion. I know in advance that parents of CFers and CFers themselves (or spouses) are probably going to have different answers. It's good to have different points of view. If I ask a question about a particular issue affecting my child, I want to hear from another parent who dealt with the same issue, as well as from a CFer (or spouse) who dealt with it themselves. But usually a parent of a child with CF, and a person who once was a child with CF, will have varying opinions.

 

[anonymous]

Sometimes you just have to consider the source when you read responses.

Some people are going to be abrupt and tactless when they respond and others will see the glass as half full & yet others will see it as half empty and some will see it as all empty with no liquid in sight.

After being around here for awhile you will get to know how certain people will respond and it's up to you to pick your own battles or just let it go.

 

[anonymous]

Sometimes you just have to consider the source when you read responses.

Some people are going to be abrupt and tactless when they respond and others will see the glass as half full & yet others will see it as half empty and some will see it as all empty with no liquid in sight.

After being around here for awhile you will get to know how certain people will respond and it's up to you to pick your own battles or just let it go.

 

[anonymous]

Sometimes you just have to consider the source when you read responses.

Some people are going to be abrupt and tactless when they respond and others will see the glass as half full & yet others will see it as half empty and some will see it as all empty with no liquid in sight.

After being around here for awhile you will get to know how certain people will respond and it's up to you to pick your own battles or just let it go.

 

[Jane]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>mic10467</b></i>

Why is it that a person with CF cannot make any comments to parents about dealing with CF without receiving some kind of defensive attack.

Michelle</end quote></div>

In my opinion, most of us welcome comments from anyone on the site. That is why we are here. However, some people comment in a way that is blunt and authoritative as if their way is the only way. Comments of this kind seem to be more of a reprimand than a helpful suggestion. People get defensive because it seems like they are being scolded.

 

[Jane]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>mic10467</b></i>

Why is it that a person with CF cannot make any comments to parents about dealing with CF without receiving some kind of defensive attack.

Michelle</end quote></div>

In my opinion, most of us welcome comments from anyone on the site. That is why we are here. However, some people comment in a way that is blunt and authoritative as if their way is the only way. Comments of this kind seem to be more of a reprimand than a helpful suggestion. People get defensive because it seems like they are being scolded.

 

[Jane]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>mic10467</b></i>

Why is it that a person with CF cannot make any comments to parents about dealing with CF without receiving some kind of defensive attack.

Michelle</end quote></div>

In my opinion, most of us welcome comments from anyone on the site. That is why we are here. However, some people comment in a way that is blunt and authoritative as if their way is the only way. Comments of this kind seem to be more of a reprimand than a helpful suggestion. People get defensive because it seems like they are being scolded.

 

[JazzysMom]

Some people dont feel they should have to "be careful" how they word their posts because it might or might not offend someone. This is true to a point & then there are certain posts that TO ME seem obvious that they are a bit much. YET others dont agree. I have this dilemma with my husband. He is upfront & brutally honest. He doesnt see how being honest can be hurtful if he doesnt mean it to be hurtful. That concept is dandy, but its not realistic.

 

[JazzysMom]

Some people dont feel they should have to "be careful" how they word their posts because it might or might not offend someone. This is true to a point & then there are certain posts that TO ME seem obvious that they are a bit much. YET others dont agree. I have this dilemma with my husband. He is upfront & brutally honest. He doesnt see how being honest can be hurtful if he doesnt mean it to be hurtful. That concept is dandy, but its not realistic.