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Opening a can o' worms
- Thread starter kitomd21
- Start date
Tom, I really feel for you....I can't even begin to imagine what you as a parent feels on a daily basis and what you must think about, think about things that no parent should ever have to think about. You guys are certainly in my prayers. It just goes to show, CF sucks....even with advances, too many children die from this horrid disease. This thread reminds me that we should all pull together and support each other. CF doesn't affect just the afflicted, it permeates the entire family as well. Even though I am nearly 40, my mom has thought about the what if's as far as losing me goes. I am in the hospital at least 4 times a year, seems to get more severe as time marches on. My last two admissions involved sepsis, very scary. Right now, I am back on IV's to see if I can prevent yet another hospital stay. My kids also are faced with the thought of losing their mom before they get married, have children etc. and it sucks. I wish no family had to think about these things.
So to every CF sufferer and family, my heart goes out to all of you....
Hugs, Jenn 39 w/CF
So to every CF sufferer and family, my heart goes out to all of you....
Hugs, Jenn 39 w/CF
Tom, I really feel for you....I can't even begin to imagine what you as a parent feels on a daily basis and what you must think about, think about things that no parent should ever have to think about. You guys are certainly in my prayers. It just goes to show, CF sucks....even with advances, too many children die from this horrid disease. This thread reminds me that we should all pull together and support each other. CF doesn't affect just the afflicted, it permeates the entire family as well. Even though I am nearly 40, my mom has thought about the what if's as far as losing me goes. I am in the hospital at least 4 times a year, seems to get more severe as time marches on. My last two admissions involved sepsis, very scary. Right now, I am back on IV's to see if I can prevent yet another hospital stay. My kids also are faced with the thought of losing their mom before they get married, have children etc. and it sucks. I wish no family had to think about these things.
So to every CF sufferer and family, my heart goes out to all of you....
Hugs, Jenn 39 w/CF
So to every CF sufferer and family, my heart goes out to all of you....
Hugs, Jenn 39 w/CF
Tom, I really feel for you....I can't even begin to imagine what you as a parent feels on a daily basis and what you must think about, think about things that no parent should ever have to think about. You guys are certainly in my prayers. It just goes to show, CF sucks....even with advances, too many children die from this horrid disease. This thread reminds me that we should all pull together and support each other. CF doesn't affect just the afflicted, it permeates the entire family as well. Even though I am nearly 40, my mom has thought about the what if's as far as losing me goes. I am in the hospital at least 4 times a year, seems to get more severe as time marches on. My last two admissions involved sepsis, very scary. Right now, I am back on IV's to see if I can prevent yet another hospital stay. My kids also are faced with the thought of losing their mom before they get married, have children etc. and it sucks. I wish no family had to think about these things.
<br />So to every CF sufferer and family, my heart goes out to all of you....
<br />Hugs, Jenn 39 w/CF
<br />So to every CF sufferer and family, my heart goes out to all of you....
<br />Hugs, Jenn 39 w/CF
I also wanted to clarify for those mentioning different forums ...that was NEVER the intention of the thread. What was intended was a greater understanding of the disease and how various populations within it are affected. Not who should post where etc!
<br>
<br>As far as I am concerned, I can't imagine anywhere else more appropriate to discuss matters like this than HERE- a forum titled ADULTS. When I post on this forum, it's because the input of adults is what I am looking for and I assume the same of any other parents, just like when adults post in the Families forum it's because they are offering parents their expertise.
<br>
<br>I agree with those looking for those 'common threads' that help shape the spectrum of severity of this disease- in large part because we want to help our children grow up to be among the population of healthier adults (at which point they will of course take over these efforts on their own!) Obviously we can't find that out without knowing who those healthier adults are and what makes them that way... and unfortunately, the flip side of that coin.
<br>
<br>I never intended anything adversarial at all. I am frustrated of late- my daughter has lost too much in just a couple years despite us doing everything we know how to do- and I am tired of hearing she can be and do anything and everything without any qualifications or further insight into how to make it possible beyond a vague 'treatments have come so amazingly far!!! gush gush gush!' from the powers that be in the large cf organizations. It's real life I am after, not comparison games and alienating people.
<br>
<br>I don't like the idea of this thread dying with people still at odds, but sometimes that's how it happens. I wanted to finish saying my piece and that will be it. Bill, Tom just wants things to settle down in this thread and to ensure we express our opinions respectfully (all of us, not anyone individually.) You are as valued here as anyone else.
<br>
<br>As far as I am concerned, I can't imagine anywhere else more appropriate to discuss matters like this than HERE- a forum titled ADULTS. When I post on this forum, it's because the input of adults is what I am looking for and I assume the same of any other parents, just like when adults post in the Families forum it's because they are offering parents their expertise.
<br>
<br>I agree with those looking for those 'common threads' that help shape the spectrum of severity of this disease- in large part because we want to help our children grow up to be among the population of healthier adults (at which point they will of course take over these efforts on their own!) Obviously we can't find that out without knowing who those healthier adults are and what makes them that way... and unfortunately, the flip side of that coin.
<br>
<br>I never intended anything adversarial at all. I am frustrated of late- my daughter has lost too much in just a couple years despite us doing everything we know how to do- and I am tired of hearing she can be and do anything and everything without any qualifications or further insight into how to make it possible beyond a vague 'treatments have come so amazingly far!!! gush gush gush!' from the powers that be in the large cf organizations. It's real life I am after, not comparison games and alienating people.
<br>
<br>I don't like the idea of this thread dying with people still at odds, but sometimes that's how it happens. I wanted to finish saying my piece and that will be it. Bill, Tom just wants things to settle down in this thread and to ensure we express our opinions respectfully (all of us, not anyone individually.) You are as valued here as anyone else.
I also wanted to clarify for those mentioning different forums ...that was NEVER the intention of the thread. What was intended was a greater understanding of the disease and how various populations within it are affected. Not who should post where etc!
<br>
<br>As far as I am concerned, I can't imagine anywhere else more appropriate to discuss matters like this than HERE- a forum titled ADULTS. When I post on this forum, it's because the input of adults is what I am looking for and I assume the same of any other parents, just like when adults post in the Families forum it's because they are offering parents their expertise.
<br>
<br>I agree with those looking for those 'common threads' that help shape the spectrum of severity of this disease- in large part because we want to help our children grow up to be among the population of healthier adults (at which point they will of course take over these efforts on their own!) Obviously we can't find that out without knowing who those healthier adults are and what makes them that way... and unfortunately, the flip side of that coin.
<br>
<br>I never intended anything adversarial at all. I am frustrated of late- my daughter has lost too much in just a couple years despite us doing everything we know how to do- and I am tired of hearing she can be and do anything and everything without any qualifications or further insight into how to make it possible beyond a vague 'treatments have come so amazingly far!!! gush gush gush!' from the powers that be in the large cf organizations. It's real life I am after, not comparison games and alienating people.
<br>
<br>I don't like the idea of this thread dying with people still at odds, but sometimes that's how it happens. I wanted to finish saying my piece and that will be it. Bill, Tom just wants things to settle down in this thread and to ensure we express our opinions respectfully (all of us, not anyone individually.) You are as valued here as anyone else.
<br>
<br>As far as I am concerned, I can't imagine anywhere else more appropriate to discuss matters like this than HERE- a forum titled ADULTS. When I post on this forum, it's because the input of adults is what I am looking for and I assume the same of any other parents, just like when adults post in the Families forum it's because they are offering parents their expertise.
<br>
<br>I agree with those looking for those 'common threads' that help shape the spectrum of severity of this disease- in large part because we want to help our children grow up to be among the population of healthier adults (at which point they will of course take over these efforts on their own!) Obviously we can't find that out without knowing who those healthier adults are and what makes them that way... and unfortunately, the flip side of that coin.
<br>
<br>I never intended anything adversarial at all. I am frustrated of late- my daughter has lost too much in just a couple years despite us doing everything we know how to do- and I am tired of hearing she can be and do anything and everything without any qualifications or further insight into how to make it possible beyond a vague 'treatments have come so amazingly far!!! gush gush gush!' from the powers that be in the large cf organizations. It's real life I am after, not comparison games and alienating people.
<br>
<br>I don't like the idea of this thread dying with people still at odds, but sometimes that's how it happens. I wanted to finish saying my piece and that will be it. Bill, Tom just wants things to settle down in this thread and to ensure we express our opinions respectfully (all of us, not anyone individually.) You are as valued here as anyone else.
I also wanted to clarify for those mentioning different forums ...that was NEVER the intention of the thread. What was intended was a greater understanding of the disease and how various populations within it are affected. Not who should post where etc!
<br>
<br>As far as I am concerned, I can't imagine anywhere else more appropriate to discuss matters like this than HERE- a forum titled ADULTS. When I post on this forum, it's because the input of adults is what I am looking for and I assume the same of any other parents, just like when adults post in the Families forum it's because they are offering parents their expertise.
<br>
<br>I agree with those looking for those 'common threads' that help shape the spectrum of severity of this disease- in large part because we want to help our children grow up to be among the population of healthier adults (at which point they will of course take over these efforts on their own!) Obviously we can't find that out without knowing who those healthier adults are and what makes them that way... and unfortunately, the flip side of that coin.
<br>
<br>I never intended anything adversarial at all. I am frustrated of late- my daughter has lost too much in just a couple years despite us doing everything we know how to do- and I am tired of hearing she can be and do anything and everything without any qualifications or further insight into how to make it possible beyond a vague 'treatments have come so amazingly far!!! gush gush gush!' from the powers that be in the large cf organizations. It's real life I am after, not comparison games and alienating people.
<br>
<br>I don't like the idea of this thread dying with people still at odds, but sometimes that's how it happens. I wanted to finish saying my piece and that will be it. Bill, Tom just wants things to settle down in this thread and to ensure we express our opinions respectfully (all of us, not anyone individually.) You are as valued here as anyone else.
<br>
<br>As far as I am concerned, I can't imagine anywhere else more appropriate to discuss matters like this than HERE- a forum titled ADULTS. When I post on this forum, it's because the input of adults is what I am looking for and I assume the same of any other parents, just like when adults post in the Families forum it's because they are offering parents their expertise.
<br>
<br>I agree with those looking for those 'common threads' that help shape the spectrum of severity of this disease- in large part because we want to help our children grow up to be among the population of healthier adults (at which point they will of course take over these efforts on their own!) Obviously we can't find that out without knowing who those healthier adults are and what makes them that way... and unfortunately, the flip side of that coin.
<br>
<br>I never intended anything adversarial at all. I am frustrated of late- my daughter has lost too much in just a couple years despite us doing everything we know how to do- and I am tired of hearing she can be and do anything and everything without any qualifications or further insight into how to make it possible beyond a vague 'treatments have come so amazingly far!!! gush gush gush!' from the powers that be in the large cf organizations. It's real life I am after, not comparison games and alienating people.
<br>
<br>I don't like the idea of this thread dying with people still at odds, but sometimes that's how it happens. I wanted to finish saying my piece and that will be it. Bill, Tom just wants things to settle down in this thread and to ensure we express our opinions respectfully (all of us, not anyone individually.) You are as valued here as anyone else.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Printer</b></i>
Hi Everyone:
This may be my last thread. just1more (Tom) has informed me that he is a moderator and that my use of this site is in peril.
It is, evidently, ok for him so say anything but its not so ok to disagree with him.
Bill</end quote></div><br><br>Bill, I did not at any time threaten your use of this site. Below is the copy of the PM that was sent, to you, as a reminder that the Terms of Service you signed prohibit personal attacks.<br><br>You are welcome to disagree, but when I posted suggested that <span style="font-weight: bold;">everyone back off, you chose to continue.<br><br><div class="FTQUOTE"><begin quote><br>Bill, I am trying to be professional since I did post on the thread.
<br><br>However, as a moderator please understand that direct attacks
will not be tolerated towards myself or anyone else. Regardless of the
topic or justification.
<br>Tom; CF.com moderation team</end quote></div><br><br>I will NOT be taking any action on your account on this site, I do NOT intervene in any thread where I'm involved. Any decisions would be made by the site owner at her discretion.<br><br>That said, this thread is now closed. I apologize to those involved if the ending was not satisfactory.<br>
Hi Everyone:
This may be my last thread. just1more (Tom) has informed me that he is a moderator and that my use of this site is in peril.
It is, evidently, ok for him so say anything but its not so ok to disagree with him.
Bill</end quote></div><br><br>Bill, I did not at any time threaten your use of this site. Below is the copy of the PM that was sent, to you, as a reminder that the Terms of Service you signed prohibit personal attacks.<br><br>You are welcome to disagree, but when I posted suggested that <span style="font-weight: bold;">everyone back off, you chose to continue.<br><br><div class="FTQUOTE"><begin quote><br>Bill, I am trying to be professional since I did post on the thread.
<br><br>However, as a moderator please understand that direct attacks
will not be tolerated towards myself or anyone else. Regardless of the
topic or justification.
<br>Tom; CF.com moderation team</end quote></div><br><br>I will NOT be taking any action on your account on this site, I do NOT intervene in any thread where I'm involved. Any decisions would be made by the site owner at her discretion.<br><br>That said, this thread is now closed. I apologize to those involved if the ending was not satisfactory.<br>
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Printer</b></i>
Hi Everyone:
This may be my last thread. just1more (Tom) has informed me that he is a moderator and that my use of this site is in peril.
It is, evidently, ok for him so say anything but its not so ok to disagree with him.
Bill</end quote><br><br>Bill, I did not at any time threaten your use of this site. Below is the copy of the PM that was sent, to you, as a reminder that the Terms of Service you signed prohibit personal attacks.<br><br>You are welcome to disagree, but when I posted suggested that <span style="font-weight: bold;">everyone back off, you chose to continue.<br><br><div class="FTQUOTE"><begin quote><br>Bill, I am trying to be professional since I did post on the thread.
<br><br>However, as a moderator please understand that direct attacks
will not be tolerated towards myself or anyone else. Regardless of the
topic or justification.
<br>Tom; CF.com moderation team</end quote><br><br>I will NOT be taking any action on your account on this site, I do NOT intervene in any thread where I'm involved. Any decisions would be made by the site owner at her discretion.<br><br>That said, this thread is now closed. I apologize to those involved if the ending was not satisfactory.<br>
Hi Everyone:
This may be my last thread. just1more (Tom) has informed me that he is a moderator and that my use of this site is in peril.
It is, evidently, ok for him so say anything but its not so ok to disagree with him.
Bill</end quote><br><br>Bill, I did not at any time threaten your use of this site. Below is the copy of the PM that was sent, to you, as a reminder that the Terms of Service you signed prohibit personal attacks.<br><br>You are welcome to disagree, but when I posted suggested that <span style="font-weight: bold;">everyone back off, you chose to continue.<br><br><div class="FTQUOTE"><begin quote><br>Bill, I am trying to be professional since I did post on the thread.
<br><br>However, as a moderator please understand that direct attacks
will not be tolerated towards myself or anyone else. Regardless of the
topic or justification.
<br>Tom; CF.com moderation team</end quote><br><br>I will NOT be taking any action on your account on this site, I do NOT intervene in any thread where I'm involved. Any decisions would be made by the site owner at her discretion.<br><br>That said, this thread is now closed. I apologize to those involved if the ending was not satisfactory.<br>
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Printer</b></i>
Hi Everyone:
This may be my last thread. just1more (Tom) has informed me that he is a moderator and that my use of this site is in peril.
It is, evidently, ok for him so say anything but its not so ok to disagree with him.
Bill</end quote><br><br>Bill, I did not at any time threaten your use of this site. Below is the copy of the PM that was sent, to you, as a reminder that the Terms of Service you signed prohibit personal attacks.<br><br>You are welcome to disagree, but when I posted suggested that <span style="font-weight: bold;">everyone back off, you chose to continue.<br><br><div class="FTQUOTE"><begin quote><br>Bill, I am trying to be professional since I did post on the thread.
<br><p><br>However, as a moderator please understand that direct attacks
will not be tolerated towards myself or anyone else. Regardless of the
topic or justification.
<br><p>Tom; CF.com moderation team</end quote><br><br>I will NOT be taking any action on your account on this site, I do NOT intervene in any thread where I'm involved. Any decisions would be made by the site owner at her discretion.<br><br>That said, this thread is now closed. I apologize to those involved if the ending was not satisfactory.<br>
Hi Everyone:
This may be my last thread. just1more (Tom) has informed me that he is a moderator and that my use of this site is in peril.
It is, evidently, ok for him so say anything but its not so ok to disagree with him.
Bill</end quote><br><br>Bill, I did not at any time threaten your use of this site. Below is the copy of the PM that was sent, to you, as a reminder that the Terms of Service you signed prohibit personal attacks.<br><br>You are welcome to disagree, but when I posted suggested that <span style="font-weight: bold;">everyone back off, you chose to continue.<br><br><div class="FTQUOTE"><begin quote><br>Bill, I am trying to be professional since I did post on the thread.
<br><p><br>However, as a moderator please understand that direct attacks
will not be tolerated towards myself or anyone else. Regardless of the
topic or justification.
<br><p>Tom; CF.com moderation team</end quote><br><br>I will NOT be taking any action on your account on this site, I do NOT intervene in any thread where I'm involved. Any decisions would be made by the site owner at her discretion.<br><br>That said, this thread is now closed. I apologize to those involved if the ending was not satisfactory.<br>