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.
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trying to empower, and not give limitations of terminal
- Thread starter mic10467
- Start date
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>
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.</end quote></div>
and you have the option to block those of us that you don't want to hear from! it's a very useful feature of the site! <img src="i/expressions/face-icon-small-smile.gif" border="0">
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.</end quote></div>
and you have the option to block those of us that you don't want to hear from! it's a very useful feature of the site! <img src="i/expressions/face-icon-small-smile.gif" border="0">
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>
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.</end quote></div>
and you have the option to block those of us that you don't want to hear from! it's a very useful feature of the site! <img src="i/expressions/face-icon-small-smile.gif" border="0">
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.</end quote></div>
and you have the option to block those of us that you don't want to hear from! it's a very useful feature of the site! <img src="i/expressions/face-icon-small-smile.gif" border="0">
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>
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.</end quote></div>
and you have the option to block those of us that you don't want to hear from! it's a very useful feature of the site! <img src="i/expressions/face-icon-small-smile.gif" border="0">
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.</end quote></div>
and you have the option to block those of us that you don't want to hear from! it's a very useful feature of the site! <img src="i/expressions/face-icon-small-smile.gif" border="0">
CFHockeyMom
New member
Michelle,
Firstly, I'm not sure why you feel I "attacked" you. Please review my post. I started it with "I agree with you". However, you did say,
<div class="FTQUOTE"><begin quote>My brother seemed to take all of the medical literature to heart about this being a terminal disease, and therefore lost any power he had to fight it</end quote></div>
This does suggest, whether you meant it that way or not, that someone who knows the facts is less likely to fight against the disease. If you did not mean it that way then what exactly did you mean?
You titled this post "Trying to empower, and not give limitations of terminal". Firstly, knowledge is empowering! Secondly, no one here, especially me, is putting any limitations on those with CF. I did say,
<div class="FTQUOTE"><begin quote>just because a person has CF doesn't mean that they can't live a full life. They just have to make certain accomodations</end quote></div>
You said...
<div class="FTQUOTE"><begin quote>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>
My response to you had nothing to do with you having CF nor is it defensive in any way. I don't go around "attacking" CFers for their opinions. If I disagree with someone or if I take issue with something they have said (CF or no CF), then I'm free to post here. I think if you took a minute to read some of my posts, you'd find that typically my opinions are more in-line with the CFer than the parents of CFers.
Everyone's opinion on this site is based in a different reality. Mine is as a parent of a child with moderate CF. There are parents on here who have already burried their children. There are parents on here that have children with relatively mild CF. There are parents of children with severe CF. There are adults with mild, moderate, and severe CF. There are spouses, widows, significant others, transplant recipients, and the list goes on. You stated your opinion as someone with mild CF and I'm stating mine as a parent to a child with moderate CF. Our perspectives are obviously different. I don't think it makes your opinion any less valuable and I wish you wouldn't think less of mine. Surely you would be offended if a much younger CFer with a more severe case discounted your opinion.
I asked you for clarification of your point. Maybe you didn't care for the way I phrased it and thus felt obligated to start a seperate thread to address it. In this seperate thread (directed solely at me) you have called me ignorant and defensive. Might I suggest you look up the definition of "attack".
Firstly, I'm not sure why you feel I "attacked" you. Please review my post. I started it with "I agree with you". However, you did say,
<div class="FTQUOTE"><begin quote>My brother seemed to take all of the medical literature to heart about this being a terminal disease, and therefore lost any power he had to fight it</end quote></div>
This does suggest, whether you meant it that way or not, that someone who knows the facts is less likely to fight against the disease. If you did not mean it that way then what exactly did you mean?
You titled this post "Trying to empower, and not give limitations of terminal". Firstly, knowledge is empowering! Secondly, no one here, especially me, is putting any limitations on those with CF. I did say,
<div class="FTQUOTE"><begin quote>just because a person has CF doesn't mean that they can't live a full life. They just have to make certain accomodations</end quote></div>
You said...
<div class="FTQUOTE"><begin quote>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>
My response to you had nothing to do with you having CF nor is it defensive in any way. I don't go around "attacking" CFers for their opinions. If I disagree with someone or if I take issue with something they have said (CF or no CF), then I'm free to post here. I think if you took a minute to read some of my posts, you'd find that typically my opinions are more in-line with the CFer than the parents of CFers.
Everyone's opinion on this site is based in a different reality. Mine is as a parent of a child with moderate CF. There are parents on here who have already burried their children. There are parents on here that have children with relatively mild CF. There are parents of children with severe CF. There are adults with mild, moderate, and severe CF. There are spouses, widows, significant others, transplant recipients, and the list goes on. You stated your opinion as someone with mild CF and I'm stating mine as a parent to a child with moderate CF. Our perspectives are obviously different. I don't think it makes your opinion any less valuable and I wish you wouldn't think less of mine. Surely you would be offended if a much younger CFer with a more severe case discounted your opinion.
I asked you for clarification of your point. Maybe you didn't care for the way I phrased it and thus felt obligated to start a seperate thread to address it. In this seperate thread (directed solely at me) you have called me ignorant and defensive. Might I suggest you look up the definition of "attack".
CFHockeyMom
New member
Michelle,
Firstly, I'm not sure why you feel I "attacked" you. Please review my post. I started it with "I agree with you". However, you did say,
<div class="FTQUOTE"><begin quote>My brother seemed to take all of the medical literature to heart about this being a terminal disease, and therefore lost any power he had to fight it</end quote></div>
This does suggest, whether you meant it that way or not, that someone who knows the facts is less likely to fight against the disease. If you did not mean it that way then what exactly did you mean?
You titled this post "Trying to empower, and not give limitations of terminal". Firstly, knowledge is empowering! Secondly, no one here, especially me, is putting any limitations on those with CF. I did say,
<div class="FTQUOTE"><begin quote>just because a person has CF doesn't mean that they can't live a full life. They just have to make certain accomodations</end quote></div>
You said...
<div class="FTQUOTE"><begin quote>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>
My response to you had nothing to do with you having CF nor is it defensive in any way. I don't go around "attacking" CFers for their opinions. If I disagree with someone or if I take issue with something they have said (CF or no CF), then I'm free to post here. I think if you took a minute to read some of my posts, you'd find that typically my opinions are more in-line with the CFer than the parents of CFers.
Everyone's opinion on this site is based in a different reality. Mine is as a parent of a child with moderate CF. There are parents on here who have already burried their children. There are parents on here that have children with relatively mild CF. There are parents of children with severe CF. There are adults with mild, moderate, and severe CF. There are spouses, widows, significant others, transplant recipients, and the list goes on. You stated your opinion as someone with mild CF and I'm stating mine as a parent to a child with moderate CF. Our perspectives are obviously different. I don't think it makes your opinion any less valuable and I wish you wouldn't think less of mine. Surely you would be offended if a much younger CFer with a more severe case discounted your opinion.
I asked you for clarification of your point. Maybe you didn't care for the way I phrased it and thus felt obligated to start a seperate thread to address it. In this seperate thread (directed solely at me) you have called me ignorant and defensive. Might I suggest you look up the definition of "attack".
Firstly, I'm not sure why you feel I "attacked" you. Please review my post. I started it with "I agree with you". However, you did say,
<div class="FTQUOTE"><begin quote>My brother seemed to take all of the medical literature to heart about this being a terminal disease, and therefore lost any power he had to fight it</end quote></div>
This does suggest, whether you meant it that way or not, that someone who knows the facts is less likely to fight against the disease. If you did not mean it that way then what exactly did you mean?
You titled this post "Trying to empower, and not give limitations of terminal". Firstly, knowledge is empowering! Secondly, no one here, especially me, is putting any limitations on those with CF. I did say,
<div class="FTQUOTE"><begin quote>just because a person has CF doesn't mean that they can't live a full life. They just have to make certain accomodations</end quote></div>
You said...
<div class="FTQUOTE"><begin quote>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>
My response to you had nothing to do with you having CF nor is it defensive in any way. I don't go around "attacking" CFers for their opinions. If I disagree with someone or if I take issue with something they have said (CF or no CF), then I'm free to post here. I think if you took a minute to read some of my posts, you'd find that typically my opinions are more in-line with the CFer than the parents of CFers.
Everyone's opinion on this site is based in a different reality. Mine is as a parent of a child with moderate CF. There are parents on here who have already burried their children. There are parents on here that have children with relatively mild CF. There are parents of children with severe CF. There are adults with mild, moderate, and severe CF. There are spouses, widows, significant others, transplant recipients, and the list goes on. You stated your opinion as someone with mild CF and I'm stating mine as a parent to a child with moderate CF. Our perspectives are obviously different. I don't think it makes your opinion any less valuable and I wish you wouldn't think less of mine. Surely you would be offended if a much younger CFer with a more severe case discounted your opinion.
I asked you for clarification of your point. Maybe you didn't care for the way I phrased it and thus felt obligated to start a seperate thread to address it. In this seperate thread (directed solely at me) you have called me ignorant and defensive. Might I suggest you look up the definition of "attack".
CFHockeyMom
New member
Michelle,
Firstly, I'm not sure why you feel I "attacked" you. Please review my post. I started it with "I agree with you". However, you did say,
<div class="FTQUOTE"><begin quote>My brother seemed to take all of the medical literature to heart about this being a terminal disease, and therefore lost any power he had to fight it</end quote></div>
This does suggest, whether you meant it that way or not, that someone who knows the facts is less likely to fight against the disease. If you did not mean it that way then what exactly did you mean?
You titled this post "Trying to empower, and not give limitations of terminal". Firstly, knowledge is empowering! Secondly, no one here, especially me, is putting any limitations on those with CF. I did say,
<div class="FTQUOTE"><begin quote>just because a person has CF doesn't mean that they can't live a full life. They just have to make certain accomodations</end quote></div>
You said...
<div class="FTQUOTE"><begin quote>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>
My response to you had nothing to do with you having CF nor is it defensive in any way. I don't go around "attacking" CFers for their opinions. If I disagree with someone or if I take issue with something they have said (CF or no CF), then I'm free to post here. I think if you took a minute to read some of my posts, you'd find that typically my opinions are more in-line with the CFer than the parents of CFers.
Everyone's opinion on this site is based in a different reality. Mine is as a parent of a child with moderate CF. There are parents on here who have already burried their children. There are parents on here that have children with relatively mild CF. There are parents of children with severe CF. There are adults with mild, moderate, and severe CF. There are spouses, widows, significant others, transplant recipients, and the list goes on. You stated your opinion as someone with mild CF and I'm stating mine as a parent to a child with moderate CF. Our perspectives are obviously different. I don't think it makes your opinion any less valuable and I wish you wouldn't think less of mine. Surely you would be offended if a much younger CFer with a more severe case discounted your opinion.
I asked you for clarification of your point. Maybe you didn't care for the way I phrased it and thus felt obligated to start a seperate thread to address it. In this seperate thread (directed solely at me) you have called me ignorant and defensive. Might I suggest you look up the definition of "attack".
Firstly, I'm not sure why you feel I "attacked" you. Please review my post. I started it with "I agree with you". However, you did say,
<div class="FTQUOTE"><begin quote>My brother seemed to take all of the medical literature to heart about this being a terminal disease, and therefore lost any power he had to fight it</end quote></div>
This does suggest, whether you meant it that way or not, that someone who knows the facts is less likely to fight against the disease. If you did not mean it that way then what exactly did you mean?
You titled this post "Trying to empower, and not give limitations of terminal". Firstly, knowledge is empowering! Secondly, no one here, especially me, is putting any limitations on those with CF. I did say,
<div class="FTQUOTE"><begin quote>just because a person has CF doesn't mean that they can't live a full life. They just have to make certain accomodations</end quote></div>
You said...
<div class="FTQUOTE"><begin quote>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>
My response to you had nothing to do with you having CF nor is it defensive in any way. I don't go around "attacking" CFers for their opinions. If I disagree with someone or if I take issue with something they have said (CF or no CF), then I'm free to post here. I think if you took a minute to read some of my posts, you'd find that typically my opinions are more in-line with the CFer than the parents of CFers.
Everyone's opinion on this site is based in a different reality. Mine is as a parent of a child with moderate CF. There are parents on here who have already burried their children. There are parents on here that have children with relatively mild CF. There are parents of children with severe CF. There are adults with mild, moderate, and severe CF. There are spouses, widows, significant others, transplant recipients, and the list goes on. You stated your opinion as someone with mild CF and I'm stating mine as a parent to a child with moderate CF. Our perspectives are obviously different. I don't think it makes your opinion any less valuable and I wish you wouldn't think less of mine. Surely you would be offended if a much younger CFer with a more severe case discounted your opinion.
I asked you for clarification of your point. Maybe you didn't care for the way I phrased it and thus felt obligated to start a seperate thread to address it. In this seperate thread (directed solely at me) you have called me ignorant and defensive. Might I suggest you look up the definition of "attack".
Rutgersnyy
New member
There is definitely 2 or 3 or 4 different worlds in the CF community. I read some of these posts and I can't relate to the pain and suffering some people are going through. I was born very fortunate to have only mild Cystic Fibrosis, I have to try to understand where the people with moderate or severe CF are coming from.
Rutgersnyy
New member
There is definitely 2 or 3 or 4 different worlds in the CF community. I read some of these posts and I can't relate to the pain and suffering some people are going through. I was born very fortunate to have only mild Cystic Fibrosis, I have to try to understand where the people with moderate or severe CF are coming from.
Rutgersnyy
New member
There is definitely 2 or 3 or 4 different worlds in the CF community. I read some of these posts and I can't relate to the pain and suffering some people are going through. I was born very fortunate to have only mild Cystic Fibrosis, I have to try to understand where the people with moderate or severe CF are coming from.
Claudette,
The reason that I started a separate thread to address you was because you addressed the post to me within the other original question someone posted about telling their child of the terminalness of CF. I felt that you were pointing me out within the thread to look like an idiot in front of other people within this site, and felt like I was being ostracized from the group. I wanted to make a new topic so that the original poster did not feel that I was talking to them, since they seemed to have handled my posting okay.
I thought about what I wrote to you all day yesterday and felt very angry most of the day. I felt angry with your posting but at the end of the day I also felt angry with myself for what I wrote to you, which I considered mean and cruel. I apologize to you for my posting that your comments were ignorant. I felt very angry that here I am trying to give my advice that was asked for, the post was not addressed to only parents of other CFers as far as I know. And instead of parents hearing what I am saying, I felt that you got defensive about it. I don't know you personally, I would never venture to comment about your parenting. I was talking about the word of terminal. If I said I felt attacked by you, why couldn't you see that. I attacked you back. I acted immature and immediately angry and should of thought before I wrote back to you. I should of just not even bothered to answer in the first place because I've learned that most CF parents don't really want advice from other CFers, they just want to talk amongst other CF parents. Sometimes I forget this fact and think for one small moment that I am going to try and help a CF parent understand something that I think would help their child.
So I didn't explain myself perfectly about my brother, it was one sentence. I didn't want to go into detail about my brother since it his life, and I felt bad enough talking about him. My point was that I've seen how he dealt with his CF, his attitude toward his CF, how he took care of himself, and how he is more sensitive inside feeling wise, how he married a woman who shoved the taking care of CF and going into the hospital repeatedly though he didn't feel it was necessary down his throat and then left him once he was on oxygen 24/7, and that my attitude and approach to my CF was different and I seem to be okay. I do have what they call moderate, I am not mild. I highly disagree with the different states of CF because of all I've seen in my life. I don't think they start out genetically that way. I think what happens in the environment, getting sick, being around more germs, and the lifestyle one leads, exercise or making sure you drink enough liquids and vitamins, has alot to do with the severity of CF. It's not to blame, it's an observation from experience. Unfortunately the medical community doesn't seem to be interested in the sociopsychological aspect of CF and doesn't realize the importance. they wouldn't know because they don't actually have CF.
I didn't really see that you were asking for clarification from me in your post. I just felt called out like I was some kind of moron for having a different opinion. If you wanted clarification why didn't you send my a personal message. Why did you feel the need to post it for all to see so they could see how great you were making me feel bad about having an opinion. I was going to send you an apology last night and discussed it with my mom and brother and they didn't think that I had anything to apologize for. But I did, because I don't like being mean, and I should of just ignored your post.
I tried hard in my post to come across with information and I can see that I didn't clearly say what I meant to say. That's all I felt yesterday is that what I said is not being heard. That's okay. It was yesterday and I won't try anymore to reach out to anymore parents of CFers, because it's not worth it to me. I was so angry yesterday at what I felt was your calling me out that I didn't do any treatments on myself. What a waste of a day.
The reason that I started a separate thread to address you was because you addressed the post to me within the other original question someone posted about telling their child of the terminalness of CF. I felt that you were pointing me out within the thread to look like an idiot in front of other people within this site, and felt like I was being ostracized from the group. I wanted to make a new topic so that the original poster did not feel that I was talking to them, since they seemed to have handled my posting okay.
I thought about what I wrote to you all day yesterday and felt very angry most of the day. I felt angry with your posting but at the end of the day I also felt angry with myself for what I wrote to you, which I considered mean and cruel. I apologize to you for my posting that your comments were ignorant. I felt very angry that here I am trying to give my advice that was asked for, the post was not addressed to only parents of other CFers as far as I know. And instead of parents hearing what I am saying, I felt that you got defensive about it. I don't know you personally, I would never venture to comment about your parenting. I was talking about the word of terminal. If I said I felt attacked by you, why couldn't you see that. I attacked you back. I acted immature and immediately angry and should of thought before I wrote back to you. I should of just not even bothered to answer in the first place because I've learned that most CF parents don't really want advice from other CFers, they just want to talk amongst other CF parents. Sometimes I forget this fact and think for one small moment that I am going to try and help a CF parent understand something that I think would help their child.
So I didn't explain myself perfectly about my brother, it was one sentence. I didn't want to go into detail about my brother since it his life, and I felt bad enough talking about him. My point was that I've seen how he dealt with his CF, his attitude toward his CF, how he took care of himself, and how he is more sensitive inside feeling wise, how he married a woman who shoved the taking care of CF and going into the hospital repeatedly though he didn't feel it was necessary down his throat and then left him once he was on oxygen 24/7, and that my attitude and approach to my CF was different and I seem to be okay. I do have what they call moderate, I am not mild. I highly disagree with the different states of CF because of all I've seen in my life. I don't think they start out genetically that way. I think what happens in the environment, getting sick, being around more germs, and the lifestyle one leads, exercise or making sure you drink enough liquids and vitamins, has alot to do with the severity of CF. It's not to blame, it's an observation from experience. Unfortunately the medical community doesn't seem to be interested in the sociopsychological aspect of CF and doesn't realize the importance. they wouldn't know because they don't actually have CF.
I didn't really see that you were asking for clarification from me in your post. I just felt called out like I was some kind of moron for having a different opinion. If you wanted clarification why didn't you send my a personal message. Why did you feel the need to post it for all to see so they could see how great you were making me feel bad about having an opinion. I was going to send you an apology last night and discussed it with my mom and brother and they didn't think that I had anything to apologize for. But I did, because I don't like being mean, and I should of just ignored your post.
I tried hard in my post to come across with information and I can see that I didn't clearly say what I meant to say. That's all I felt yesterday is that what I said is not being heard. That's okay. It was yesterday and I won't try anymore to reach out to anymore parents of CFers, because it's not worth it to me. I was so angry yesterday at what I felt was your calling me out that I didn't do any treatments on myself. What a waste of a day.
Claudette,
The reason that I started a separate thread to address you was because you addressed the post to me within the other original question someone posted about telling their child of the terminalness of CF. I felt that you were pointing me out within the thread to look like an idiot in front of other people within this site, and felt like I was being ostracized from the group. I wanted to make a new topic so that the original poster did not feel that I was talking to them, since they seemed to have handled my posting okay.
I thought about what I wrote to you all day yesterday and felt very angry most of the day. I felt angry with your posting but at the end of the day I also felt angry with myself for what I wrote to you, which I considered mean and cruel. I apologize to you for my posting that your comments were ignorant. I felt very angry that here I am trying to give my advice that was asked for, the post was not addressed to only parents of other CFers as far as I know. And instead of parents hearing what I am saying, I felt that you got defensive about it. I don't know you personally, I would never venture to comment about your parenting. I was talking about the word of terminal. If I said I felt attacked by you, why couldn't you see that. I attacked you back. I acted immature and immediately angry and should of thought before I wrote back to you. I should of just not even bothered to answer in the first place because I've learned that most CF parents don't really want advice from other CFers, they just want to talk amongst other CF parents. Sometimes I forget this fact and think for one small moment that I am going to try and help a CF parent understand something that I think would help their child.
So I didn't explain myself perfectly about my brother, it was one sentence. I didn't want to go into detail about my brother since it his life, and I felt bad enough talking about him. My point was that I've seen how he dealt with his CF, his attitude toward his CF, how he took care of himself, and how he is more sensitive inside feeling wise, how he married a woman who shoved the taking care of CF and going into the hospital repeatedly though he didn't feel it was necessary down his throat and then left him once he was on oxygen 24/7, and that my attitude and approach to my CF was different and I seem to be okay. I do have what they call moderate, I am not mild. I highly disagree with the different states of CF because of all I've seen in my life. I don't think they start out genetically that way. I think what happens in the environment, getting sick, being around more germs, and the lifestyle one leads, exercise or making sure you drink enough liquids and vitamins, has alot to do with the severity of CF. It's not to blame, it's an observation from experience. Unfortunately the medical community doesn't seem to be interested in the sociopsychological aspect of CF and doesn't realize the importance. they wouldn't know because they don't actually have CF.
I didn't really see that you were asking for clarification from me in your post. I just felt called out like I was some kind of moron for having a different opinion. If you wanted clarification why didn't you send my a personal message. Why did you feel the need to post it for all to see so they could see how great you were making me feel bad about having an opinion. I was going to send you an apology last night and discussed it with my mom and brother and they didn't think that I had anything to apologize for. But I did, because I don't like being mean, and I should of just ignored your post.
I tried hard in my post to come across with information and I can see that I didn't clearly say what I meant to say. That's all I felt yesterday is that what I said is not being heard. That's okay. It was yesterday and I won't try anymore to reach out to anymore parents of CFers, because it's not worth it to me. I was so angry yesterday at what I felt was your calling me out that I didn't do any treatments on myself. What a waste of a day.
The reason that I started a separate thread to address you was because you addressed the post to me within the other original question someone posted about telling their child of the terminalness of CF. I felt that you were pointing me out within the thread to look like an idiot in front of other people within this site, and felt like I was being ostracized from the group. I wanted to make a new topic so that the original poster did not feel that I was talking to them, since they seemed to have handled my posting okay.
I thought about what I wrote to you all day yesterday and felt very angry most of the day. I felt angry with your posting but at the end of the day I also felt angry with myself for what I wrote to you, which I considered mean and cruel. I apologize to you for my posting that your comments were ignorant. I felt very angry that here I am trying to give my advice that was asked for, the post was not addressed to only parents of other CFers as far as I know. And instead of parents hearing what I am saying, I felt that you got defensive about it. I don't know you personally, I would never venture to comment about your parenting. I was talking about the word of terminal. If I said I felt attacked by you, why couldn't you see that. I attacked you back. I acted immature and immediately angry and should of thought before I wrote back to you. I should of just not even bothered to answer in the first place because I've learned that most CF parents don't really want advice from other CFers, they just want to talk amongst other CF parents. Sometimes I forget this fact and think for one small moment that I am going to try and help a CF parent understand something that I think would help their child.
So I didn't explain myself perfectly about my brother, it was one sentence. I didn't want to go into detail about my brother since it his life, and I felt bad enough talking about him. My point was that I've seen how he dealt with his CF, his attitude toward his CF, how he took care of himself, and how he is more sensitive inside feeling wise, how he married a woman who shoved the taking care of CF and going into the hospital repeatedly though he didn't feel it was necessary down his throat and then left him once he was on oxygen 24/7, and that my attitude and approach to my CF was different and I seem to be okay. I do have what they call moderate, I am not mild. I highly disagree with the different states of CF because of all I've seen in my life. I don't think they start out genetically that way. I think what happens in the environment, getting sick, being around more germs, and the lifestyle one leads, exercise or making sure you drink enough liquids and vitamins, has alot to do with the severity of CF. It's not to blame, it's an observation from experience. Unfortunately the medical community doesn't seem to be interested in the sociopsychological aspect of CF and doesn't realize the importance. they wouldn't know because they don't actually have CF.
I didn't really see that you were asking for clarification from me in your post. I just felt called out like I was some kind of moron for having a different opinion. If you wanted clarification why didn't you send my a personal message. Why did you feel the need to post it for all to see so they could see how great you were making me feel bad about having an opinion. I was going to send you an apology last night and discussed it with my mom and brother and they didn't think that I had anything to apologize for. But I did, because I don't like being mean, and I should of just ignored your post.
I tried hard in my post to come across with information and I can see that I didn't clearly say what I meant to say. That's all I felt yesterday is that what I said is not being heard. That's okay. It was yesterday and I won't try anymore to reach out to anymore parents of CFers, because it's not worth it to me. I was so angry yesterday at what I felt was your calling me out that I didn't do any treatments on myself. What a waste of a day.
Claudette,
The reason that I started a separate thread to address you was because you addressed the post to me within the other original question someone posted about telling their child of the terminalness of CF. I felt that you were pointing me out within the thread to look like an idiot in front of other people within this site, and felt like I was being ostracized from the group. I wanted to make a new topic so that the original poster did not feel that I was talking to them, since they seemed to have handled my posting okay.
I thought about what I wrote to you all day yesterday and felt very angry most of the day. I felt angry with your posting but at the end of the day I also felt angry with myself for what I wrote to you, which I considered mean and cruel. I apologize to you for my posting that your comments were ignorant. I felt very angry that here I am trying to give my advice that was asked for, the post was not addressed to only parents of other CFers as far as I know. And instead of parents hearing what I am saying, I felt that you got defensive about it. I don't know you personally, I would never venture to comment about your parenting. I was talking about the word of terminal. If I said I felt attacked by you, why couldn't you see that. I attacked you back. I acted immature and immediately angry and should of thought before I wrote back to you. I should of just not even bothered to answer in the first place because I've learned that most CF parents don't really want advice from other CFers, they just want to talk amongst other CF parents. Sometimes I forget this fact and think for one small moment that I am going to try and help a CF parent understand something that I think would help their child.
So I didn't explain myself perfectly about my brother, it was one sentence. I didn't want to go into detail about my brother since it his life, and I felt bad enough talking about him. My point was that I've seen how he dealt with his CF, his attitude toward his CF, how he took care of himself, and how he is more sensitive inside feeling wise, how he married a woman who shoved the taking care of CF and going into the hospital repeatedly though he didn't feel it was necessary down his throat and then left him once he was on oxygen 24/7, and that my attitude and approach to my CF was different and I seem to be okay. I do have what they call moderate, I am not mild. I highly disagree with the different states of CF because of all I've seen in my life. I don't think they start out genetically that way. I think what happens in the environment, getting sick, being around more germs, and the lifestyle one leads, exercise or making sure you drink enough liquids and vitamins, has alot to do with the severity of CF. It's not to blame, it's an observation from experience. Unfortunately the medical community doesn't seem to be interested in the sociopsychological aspect of CF and doesn't realize the importance. they wouldn't know because they don't actually have CF.
I didn't really see that you were asking for clarification from me in your post. I just felt called out like I was some kind of moron for having a different opinion. If you wanted clarification why didn't you send my a personal message. Why did you feel the need to post it for all to see so they could see how great you were making me feel bad about having an opinion. I was going to send you an apology last night and discussed it with my mom and brother and they didn't think that I had anything to apologize for. But I did, because I don't like being mean, and I should of just ignored your post.
I tried hard in my post to come across with information and I can see that I didn't clearly say what I meant to say. That's all I felt yesterday is that what I said is not being heard. That's okay. It was yesterday and I won't try anymore to reach out to anymore parents of CFers, because it's not worth it to me. I was so angry yesterday at what I felt was your calling me out that I didn't do any treatments on myself. What a waste of a day.
The reason that I started a separate thread to address you was because you addressed the post to me within the other original question someone posted about telling their child of the terminalness of CF. I felt that you were pointing me out within the thread to look like an idiot in front of other people within this site, and felt like I was being ostracized from the group. I wanted to make a new topic so that the original poster did not feel that I was talking to them, since they seemed to have handled my posting okay.
I thought about what I wrote to you all day yesterday and felt very angry most of the day. I felt angry with your posting but at the end of the day I also felt angry with myself for what I wrote to you, which I considered mean and cruel. I apologize to you for my posting that your comments were ignorant. I felt very angry that here I am trying to give my advice that was asked for, the post was not addressed to only parents of other CFers as far as I know. And instead of parents hearing what I am saying, I felt that you got defensive about it. I don't know you personally, I would never venture to comment about your parenting. I was talking about the word of terminal. If I said I felt attacked by you, why couldn't you see that. I attacked you back. I acted immature and immediately angry and should of thought before I wrote back to you. I should of just not even bothered to answer in the first place because I've learned that most CF parents don't really want advice from other CFers, they just want to talk amongst other CF parents. Sometimes I forget this fact and think for one small moment that I am going to try and help a CF parent understand something that I think would help their child.
So I didn't explain myself perfectly about my brother, it was one sentence. I didn't want to go into detail about my brother since it his life, and I felt bad enough talking about him. My point was that I've seen how he dealt with his CF, his attitude toward his CF, how he took care of himself, and how he is more sensitive inside feeling wise, how he married a woman who shoved the taking care of CF and going into the hospital repeatedly though he didn't feel it was necessary down his throat and then left him once he was on oxygen 24/7, and that my attitude and approach to my CF was different and I seem to be okay. I do have what they call moderate, I am not mild. I highly disagree with the different states of CF because of all I've seen in my life. I don't think they start out genetically that way. I think what happens in the environment, getting sick, being around more germs, and the lifestyle one leads, exercise or making sure you drink enough liquids and vitamins, has alot to do with the severity of CF. It's not to blame, it's an observation from experience. Unfortunately the medical community doesn't seem to be interested in the sociopsychological aspect of CF and doesn't realize the importance. they wouldn't know because they don't actually have CF.
I didn't really see that you were asking for clarification from me in your post. I just felt called out like I was some kind of moron for having a different opinion. If you wanted clarification why didn't you send my a personal message. Why did you feel the need to post it for all to see so they could see how great you were making me feel bad about having an opinion. I was going to send you an apology last night and discussed it with my mom and brother and they didn't think that I had anything to apologize for. But I did, because I don't like being mean, and I should of just ignored your post.
I tried hard in my post to come across with information and I can see that I didn't clearly say what I meant to say. That's all I felt yesterday is that what I said is not being heard. That's okay. It was yesterday and I won't try anymore to reach out to anymore parents of CFers, because it's not worth it to me. I was so angry yesterday at what I felt was your calling me out that I didn't do any treatments on myself. What a waste of a day.
**completely off topic**
<div class="FTQUOTE"><begin quote>how he married a woman who shoved the taking care of CF and going into the hospital repeatedly though he didn't feel it was necessary down his throat and then left him once he was on oxygen 24/7,</end quote></div>
This stuff seriously, seriously pisses me off, it doesn't matter how many times I see it. I know I can be a little bit of a twit about calling other spouses out when they do something stupid (smoking, not going to see thier husband/wife in the hospital, not helping around the house). But THIS MAKES ME INSANE *headesk*
sorry, had to get that out of my system.
<div class="FTQUOTE"><begin quote>how he married a woman who shoved the taking care of CF and going into the hospital repeatedly though he didn't feel it was necessary down his throat and then left him once he was on oxygen 24/7,</end quote></div>
This stuff seriously, seriously pisses me off, it doesn't matter how many times I see it. I know I can be a little bit of a twit about calling other spouses out when they do something stupid (smoking, not going to see thier husband/wife in the hospital, not helping around the house). But THIS MAKES ME INSANE *headesk*
sorry, had to get that out of my system.
**completely off topic**
<div class="FTQUOTE"><begin quote>how he married a woman who shoved the taking care of CF and going into the hospital repeatedly though he didn't feel it was necessary down his throat and then left him once he was on oxygen 24/7,</end quote></div>
This stuff seriously, seriously pisses me off, it doesn't matter how many times I see it. I know I can be a little bit of a twit about calling other spouses out when they do something stupid (smoking, not going to see thier husband/wife in the hospital, not helping around the house). But THIS MAKES ME INSANE *headesk*
sorry, had to get that out of my system.
<div class="FTQUOTE"><begin quote>how he married a woman who shoved the taking care of CF and going into the hospital repeatedly though he didn't feel it was necessary down his throat and then left him once he was on oxygen 24/7,</end quote></div>
This stuff seriously, seriously pisses me off, it doesn't matter how many times I see it. I know I can be a little bit of a twit about calling other spouses out when they do something stupid (smoking, not going to see thier husband/wife in the hospital, not helping around the house). But THIS MAKES ME INSANE *headesk*
sorry, had to get that out of my system.
**completely off topic**
<div class="FTQUOTE"><begin quote>how he married a woman who shoved the taking care of CF and going into the hospital repeatedly though he didn't feel it was necessary down his throat and then left him once he was on oxygen 24/7,</end quote></div>
This stuff seriously, seriously pisses me off, it doesn't matter how many times I see it. I know I can be a little bit of a twit about calling other spouses out when they do something stupid (smoking, not going to see thier husband/wife in the hospital, not helping around the house). But THIS MAKES ME INSANE *headesk*
sorry, had to get that out of my system.
<div class="FTQUOTE"><begin quote>how he married a woman who shoved the taking care of CF and going into the hospital repeatedly though he didn't feel it was necessary down his throat and then left him once he was on oxygen 24/7,</end quote></div>
This stuff seriously, seriously pisses me off, it doesn't matter how many times I see it. I know I can be a little bit of a twit about calling other spouses out when they do something stupid (smoking, not going to see thier husband/wife in the hospital, not helping around the house). But THIS MAKES ME INSANE *headesk*
sorry, had to get that out of my system.
CFHockeyMom
New member
So you've learned in all of your 29 posts here that I, as a parent of a CFer, don't want to hear what you have to say? Untrue. As I stated, I simply took exception to your statement about your brother knowing all the facts and that some how translated to his health not being as good as yours.
Again, I encourage you to at least look at my previous posts before you make judgements about me. And even then I would ask you to not to be so judgmental about me or any CF parent.
You made a statement, I disagreed with it, I commented on it, and was looking for clarification. End of story. You are entitled to disagree with me. We can agree to not agree. There are many differing opinions here. I really don't see what me being a parent of a CFer, has to do with us having differing opinions. After all, there are several CFers that agreed with me on that particular issue.
It seems that maybe you would like to draw lines between us and in spite of what I type here, you have passed judgement on me and all parents of CFers. Might I remind you that your mother is a parent of a CFer.
Again, I encourage you to at least look at my previous posts before you make judgements about me. And even then I would ask you to not to be so judgmental about me or any CF parent.
You made a statement, I disagreed with it, I commented on it, and was looking for clarification. End of story. You are entitled to disagree with me. We can agree to not agree. There are many differing opinions here. I really don't see what me being a parent of a CFer, has to do with us having differing opinions. After all, there are several CFers that agreed with me on that particular issue.
It seems that maybe you would like to draw lines between us and in spite of what I type here, you have passed judgement on me and all parents of CFers. Might I remind you that your mother is a parent of a CFer.
CFHockeyMom
New member
So you've learned in all of your 29 posts here that I, as a parent of a CFer, don't want to hear what you have to say? Untrue. As I stated, I simply took exception to your statement about your brother knowing all the facts and that some how translated to his health not being as good as yours.
Again, I encourage you to at least look at my previous posts before you make judgements about me. And even then I would ask you to not to be so judgmental about me or any CF parent.
You made a statement, I disagreed with it, I commented on it, and was looking for clarification. End of story. You are entitled to disagree with me. We can agree to not agree. There are many differing opinions here. I really don't see what me being a parent of a CFer, has to do with us having differing opinions. After all, there are several CFers that agreed with me on that particular issue.
It seems that maybe you would like to draw lines between us and in spite of what I type here, you have passed judgement on me and all parents of CFers. Might I remind you that your mother is a parent of a CFer.
Again, I encourage you to at least look at my previous posts before you make judgements about me. And even then I would ask you to not to be so judgmental about me or any CF parent.
You made a statement, I disagreed with it, I commented on it, and was looking for clarification. End of story. You are entitled to disagree with me. We can agree to not agree. There are many differing opinions here. I really don't see what me being a parent of a CFer, has to do with us having differing opinions. After all, there are several CFers that agreed with me on that particular issue.
It seems that maybe you would like to draw lines between us and in spite of what I type here, you have passed judgement on me and all parents of CFers. Might I remind you that your mother is a parent of a CFer.
CFHockeyMom
New member
So you've learned in all of your 29 posts here that I, as a parent of a CFer, don't want to hear what you have to say? Untrue. As I stated, I simply took exception to your statement about your brother knowing all the facts and that some how translated to his health not being as good as yours.
Again, I encourage you to at least look at my previous posts before you make judgements about me. And even then I would ask you to not to be so judgmental about me or any CF parent.
You made a statement, I disagreed with it, I commented on it, and was looking for clarification. End of story. You are entitled to disagree with me. We can agree to not agree. There are many differing opinions here. I really don't see what me being a parent of a CFer, has to do with us having differing opinions. After all, there are several CFers that agreed with me on that particular issue.
It seems that maybe you would like to draw lines between us and in spite of what I type here, you have passed judgement on me and all parents of CFers. Might I remind you that your mother is a parent of a CFer.
Again, I encourage you to at least look at my previous posts before you make judgements about me. And even then I would ask you to not to be so judgmental about me or any CF parent.
You made a statement, I disagreed with it, I commented on it, and was looking for clarification. End of story. You are entitled to disagree with me. We can agree to not agree. There are many differing opinions here. I really don't see what me being a parent of a CFer, has to do with us having differing opinions. After all, there are several CFers that agreed with me on that particular issue.
It seems that maybe you would like to draw lines between us and in spite of what I type here, you have passed judgement on me and all parents of CFers. Might I remind you that your mother is a parent of a CFer.
"I should of just not even bothered to answer in the first place because I've learned that most CF parents don't really want advice from other CFers, they just want to talk amongst other CF parents. Sometimes I forget this fact and think for one small moment that I am going to try and help a CF parent understand something that I think would help their child."
I just love apologies that aren't really apologies. you know the ones that say they are sorry but then when they explain why they did it manage to still say insulting comments. Last time i checked an apology was someone saying they are sorry and that is it. Not saying sorry and then another insult. Like the above post did
I just love apologies that aren't really apologies. you know the ones that say they are sorry but then when they explain why they did it manage to still say insulting comments. Last time i checked an apology was someone saying they are sorry and that is it. Not saying sorry and then another insult. Like the above post did