Help and support

C

chrissyd

New member
I found this site, and was happy to find others like me. I had never really had conversations with other CFer's up until that point. I didn't start reading the forums until recently, and have found that out of 100 posts that I have read already this week only 5 really bothered me. 3 I thought were negative and the other 2 were just dumb ( in my opinion)

I think its all how you interpret what you read. Although admittedly many people don't want to hear the downs on CF...

I agree that we should live life to the fullest CF or not. Living one day at a time is a good idea too, however we must take care of ourselves, and we must be prepared for what *may* happen down the road. That being said, I do not feel like advice that is not sugar coated is negative or invalid. It's advice. Take it or leave it.

<img src="i/expressions/rose.gif" border="0">
Chrissy

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

I'd like to add that I agree with you and your mom. I'm just saying that all advice should be taken with a grain of salt. Some people who are negative (by negative I mean those who dont sugar coat)about CF have a reason to be. A reason that I don't have today, but I might tomorrow. Does that stop me from living? No. It helps me to feel confidently prepared in what *may* be in my future. There are some out there whom I consider to be rude, but hey the wonderful thing about advice forums...you don't have to take everyones or anyones advice! <img src="i/expressions/face-icon-small-wink.gif" border="0">
 
C

chrissyd

New member
I found this site, and was happy to find others like me. I had never really had conversations with other CFer's up until that point. I didn't start reading the forums until recently, and have found that out of 100 posts that I have read already this week only 5 really bothered me. 3 I thought were negative and the other 2 were just dumb ( in my opinion)

I think its all how you interpret what you read. Although admittedly many people don't want to hear the downs on CF...

I agree that we should live life to the fullest CF or not. Living one day at a time is a good idea too, however we must take care of ourselves, and we must be prepared for what *may* happen down the road. That being said, I do not feel like advice that is not sugar coated is negative or invalid. It's advice. Take it or leave it.

<img src="i/expressions/rose.gif" border="0">
Chrissy

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

I'd like to add that I agree with you and your mom. I'm just saying that all advice should be taken with a grain of salt. Some people who are negative (by negative I mean those who dont sugar coat)about CF have a reason to be. A reason that I don't have today, but I might tomorrow. Does that stop me from living? No. It helps me to feel confidently prepared in what *may* be in my future. There are some out there whom I consider to be rude, but hey the wonderful thing about advice forums...you don't have to take everyones or anyones advice! <img src="i/expressions/face-icon-small-wink.gif" border="0">
 
O

okok

New member
I think that sometimes people tend to present things in a very one sided manner....For instance, sakasuka talks about how CF effects everyone differently which is absolutely true but she only seems to use this information as a warning to people about how bad their CF will be even if they have "mild" mutations...

However this same princible means that some people with two "mild" mutations might not even ever have CF symptoms beyond that of many carriers (if any symptoms at all). Of course no one can predict the outcome in these situations but i do not think that means that the only right thing to do for that individual's health is to assume the worst and act accordingly. Personally i think alot of medications have extremely negative side effects. Some can effect kidney and liver function, hearing, gastrointestinal health, etc. I'd much rather CAREFULLY watch my health, exersize religiously, and start taking agressive action at the first and smallest sign that something was going on. Let's say i found out CF could possibly be an issue for me when i was a small child. most people with my mutations were symptomless but because i wanted to be proactive "just in case" so i started taking 1 g ibprofen/day to prevent lung damage due to inflamation. By the time i was 40 i had so much kidney damage from taking so many medications that i needed a transplant... AND i never did develop any symptoms of CF. People do go their whole, normal, healthy lives with mutations in both CFTR alleles and NEVER develop any symptoms. Why shouldn't people who come here with questions about benign or mild mutations be informed that there is a possibility they will be perfectly healthy...? Don't you think they deserve to know this information so that they can make responsible and informed decsions about their health?

Obviously they should also be aware of the fact that their CF could be much more severe than others who have the same mutation but wouldn't we be doing them a disservice if that was the only information we provided...?
 
O

okok

New member
I think that sometimes people tend to present things in a very one sided manner....For instance, sakasuka talks about how CF effects everyone differently which is absolutely true but she only seems to use this information as a warning to people about how bad their CF will be even if they have "mild" mutations...

However this same princible means that some people with two "mild" mutations might not even ever have CF symptoms beyond that of many carriers (if any symptoms at all). Of course no one can predict the outcome in these situations but i do not think that means that the only right thing to do for that individual's health is to assume the worst and act accordingly. Personally i think alot of medications have extremely negative side effects. Some can effect kidney and liver function, hearing, gastrointestinal health, etc. I'd much rather CAREFULLY watch my health, exersize religiously, and start taking agressive action at the first and smallest sign that something was going on. Let's say i found out CF could possibly be an issue for me when i was a small child. most people with my mutations were symptomless but because i wanted to be proactive "just in case" so i started taking 1 g ibprofen/day to prevent lung damage due to inflamation. By the time i was 40 i had so much kidney damage from taking so many medications that i needed a transplant... AND i never did develop any symptoms of CF. People do go their whole, normal, healthy lives with mutations in both CFTR alleles and NEVER develop any symptoms. Why shouldn't people who come here with questions about benign or mild mutations be informed that there is a possibility they will be perfectly healthy...? Don't you think they deserve to know this information so that they can make responsible and informed decsions about their health?

Obviously they should also be aware of the fact that their CF could be much more severe than others who have the same mutation but wouldn't we be doing them a disservice if that was the only information we provided...?
 
O

okok

New member
I think that sometimes people tend to present things in a very one sided manner....For instance, sakasuka talks about how CF effects everyone differently which is absolutely true but she only seems to use this information as a warning to people about how bad their CF will be even if they have "mild" mutations...

However this same princible means that some people with two "mild" mutations might not even ever have CF symptoms beyond that of many carriers (if any symptoms at all). Of course no one can predict the outcome in these situations but i do not think that means that the only right thing to do for that individual's health is to assume the worst and act accordingly. Personally i think alot of medications have extremely negative side effects. Some can effect kidney and liver function, hearing, gastrointestinal health, etc. I'd much rather CAREFULLY watch my health, exersize religiously, and start taking agressive action at the first and smallest sign that something was going on. Let's say i found out CF could possibly be an issue for me when i was a small child. most people with my mutations were symptomless but because i wanted to be proactive "just in case" so i started taking 1 g ibprofen/day to prevent lung damage due to inflamation. By the time i was 40 i had so much kidney damage from taking so many medications that i needed a transplant... AND i never did develop any symptoms of CF. People do go their whole, normal, healthy lives with mutations in both CFTR alleles and NEVER develop any symptoms. Why shouldn't people who come here with questions about benign or mild mutations be informed that there is a possibility they will be perfectly healthy...? Don't you think they deserve to know this information so that they can make responsible and informed decsions about their health?

Obviously they should also be aware of the fact that their CF could be much more severe than others who have the same mutation but wouldn't we be doing them a disservice if that was the only information we provided...?
 
O

okok

New member
I think that sometimes people tend to present things in a very one sided manner....For instance, sakasuka talks about how CF effects everyone differently which is absolutely true but she only seems to use this information as a warning to people about how bad their CF will be even if they have "mild" mutations...

However this same princible means that some people with two "mild" mutations might not even ever have CF symptoms beyond that of many carriers (if any symptoms at all). Of course no one can predict the outcome in these situations but i do not think that means that the only right thing to do for that individual's health is to assume the worst and act accordingly. Personally i think alot of medications have extremely negative side effects. Some can effect kidney and liver function, hearing, gastrointestinal health, etc. I'd much rather CAREFULLY watch my health, exersize religiously, and start taking agressive action at the first and smallest sign that something was going on. Let's say i found out CF could possibly be an issue for me when i was a small child. most people with my mutations were symptomless but because i wanted to be proactive "just in case" so i started taking 1 g ibprofen/day to prevent lung damage due to inflamation. By the time i was 40 i had so much kidney damage from taking so many medications that i needed a transplant... AND i never did develop any symptoms of CF. People do go their whole, normal, healthy lives with mutations in both CFTR alleles and NEVER develop any symptoms. Why shouldn't people who come here with questions about benign or mild mutations be informed that there is a possibility they will be perfectly healthy...? Don't you think they deserve to know this information so that they can make responsible and informed decsions about their health?

Obviously they should also be aware of the fact that their CF could be much more severe than others who have the same mutation but wouldn't we be doing them a disservice if that was the only information we provided...?
 
O

okok

New member
I think that sometimes people tend to present things in a very one sided manner....For instance, sakasuka talks about how CF effects everyone differently which is absolutely true but she only seems to use this information as a warning to people about how bad their CF will be even if they have "mild" mutations...

However this same princible means that some people with two "mild" mutations might not even ever have CF symptoms beyond that of many carriers (if any symptoms at all). Of course no one can predict the outcome in these situations but i do not think that means that the only right thing to do for that individual's health is to assume the worst and act accordingly. Personally i think alot of medications have extremely negative side effects. Some can effect kidney and liver function, hearing, gastrointestinal health, etc. I'd much rather CAREFULLY watch my health, exersize religiously, and start taking agressive action at the first and smallest sign that something was going on. Let's say i found out CF could possibly be an issue for me when i was a small child. most people with my mutations were symptomless but because i wanted to be proactive "just in case" so i started taking 1 g ibprofen/day to prevent lung damage due to inflamation. By the time i was 40 i had so much kidney damage from taking so many medications that i needed a transplant... AND i never did develop any symptoms of CF. People do go their whole, normal, healthy lives with mutations in both CFTR alleles and NEVER develop any symptoms. Why shouldn't people who come here with questions about benign or mild mutations be informed that there is a possibility they will be perfectly healthy...? Don't you think they deserve to know this information so that they can make responsible and informed decsions about their health?

Obviously they should also be aware of the fact that their CF could be much more severe than others who have the same mutation but wouldn't we be doing them a disservice if that was the only information we provided...?
 
O

okok

New member
I think that sometimes people tend to present things in a very one sided manner....For instance, sakasuka talks about how CF effects everyone differently which is absolutely true but she only seems to use this information as a warning to people about how bad their CF will be even if they have "mild" mutations...

However this same princible means that some people with two "mild" mutations might not even ever have CF symptoms beyond that of many carriers (if any symptoms at all). Of course no one can predict the outcome in these situations but i do not think that means that the only right thing to do for that individual's health is to assume the worst and act accordingly. Personally i think alot of medications have extremely negative side effects. Some can effect kidney and liver function, hearing, gastrointestinal health, etc. I'd much rather CAREFULLY watch my health, exersize religiously, and start taking agressive action at the first and smallest sign that something was going on. Let's say i found out CF could possibly be an issue for me when i was a small child. most people with my mutations were symptomless but because i wanted to be proactive "just in case" so i started taking 1 g ibprofen/day to prevent lung damage due to inflamation. By the time i was 40 i had so much kidney damage from taking so many medications that i needed a transplant... AND i never did develop any symptoms of CF. People do go their whole, normal, healthy lives with mutations in both CFTR alleles and NEVER develop any symptoms. Why shouldn't people who come here with questions about benign or mild mutations be informed that there is a possibility they will be perfectly healthy...? Don't you think they deserve to know this information so that they can make responsible and informed decsions about their health?

Obviously they should also be aware of the fact that their CF could be much more severe than others who have the same mutation but wouldn't we be doing them a disservice if that was the only information we provided...?
 
D

dbtoo

New member
I suggest a <div class="FTQUOTE"><begin quote>"Blow sunshine up my butt" </end quote></div> icon.
It can be used by posters who are only interested in positive reenforcement of their own opinion or for pleasant and encourging feedback to ensure that they are not disheartened by any negative content or comment and can continue within their own perceptions of reality.

"There, there dear, everything will be fine!" - my grandmother

"Hey you, get off of my cloud! " For those of you TOO YOUNG to know - Rolling Stones (not the rag, the band.)

oooo oooo --- how about a "NO SAKASUKA" icon? <img src="i/expressions/face-icon-small-happy.gif" border="0"> <img src="i/expressions/devil.gif" border="0"> <img src="i/expressions/beer.gif" border="0"> (Just kidding with you girl!)
 
D

dbtoo

New member
I suggest a <div class="FTQUOTE"><begin quote>"Blow sunshine up my butt" </end quote></div> icon.
It can be used by posters who are only interested in positive reenforcement of their own opinion or for pleasant and encourging feedback to ensure that they are not disheartened by any negative content or comment and can continue within their own perceptions of reality.

"There, there dear, everything will be fine!" - my grandmother

"Hey you, get off of my cloud! " For those of you TOO YOUNG to know - Rolling Stones (not the rag, the band.)

oooo oooo --- how about a "NO SAKASUKA" icon? <img src="i/expressions/face-icon-small-happy.gif" border="0"> <img src="i/expressions/devil.gif" border="0"> <img src="i/expressions/beer.gif" border="0"> (Just kidding with you girl!)
 
D

dbtoo

New member
I suggest a <div class="FTQUOTE"><begin quote>"Blow sunshine up my butt" </end quote></div> icon.
It can be used by posters who are only interested in positive reenforcement of their own opinion or for pleasant and encourging feedback to ensure that they are not disheartened by any negative content or comment and can continue within their own perceptions of reality.

"There, there dear, everything will be fine!" - my grandmother

"Hey you, get off of my cloud! " For those of you TOO YOUNG to know - Rolling Stones (not the rag, the band.)

oooo oooo --- how about a "NO SAKASUKA" icon? <img src="i/expressions/face-icon-small-happy.gif" border="0"> <img src="i/expressions/devil.gif" border="0"> <img src="i/expressions/beer.gif" border="0"> (Just kidding with you girl!)
 
D

dbtoo

New member
I suggest a <div class="FTQUOTE"><begin quote>"Blow sunshine up my butt" </end quote></div> icon.
It can be used by posters who are only interested in positive reenforcement of their own opinion or for pleasant and encourging feedback to ensure that they are not disheartened by any negative content or comment and can continue within their own perceptions of reality.

"There, there dear, everything will be fine!" - my grandmother

"Hey you, get off of my cloud! " For those of you TOO YOUNG to know - Rolling Stones (not the rag, the band.)

oooo oooo --- how about a "NO SAKASUKA" icon? <img src="i/expressions/face-icon-small-happy.gif" border="0"> <img src="i/expressions/devil.gif" border="0"> <img src="i/expressions/beer.gif" border="0"> (Just kidding with you girl!)
 
D

dbtoo

New member
I suggest a <div class="FTQUOTE"><begin quote>"Blow sunshine up my butt" </end quote> icon.
It can be used by posters who are only interested in positive reenforcement of their own opinion or for pleasant and encourging feedback to ensure that they are not disheartened by any negative content or comment and can continue within their own perceptions of reality.

"There, there dear, everything will be fine!" - my grandmother

"Hey you, get off of my cloud! " For those of you TOO YOUNG to know - Rolling Stones (not the rag, the band.)

oooo oooo --- how about a "NO SAKASUKA" icon? <img src="i/expressions/face-icon-small-happy.gif" border="0"> <img src="i/expressions/devil.gif" border="0"> <img src="i/expressions/beer.gif" border="0"> (Just kidding with you girl!)
 
D

dbtoo

New member
I suggest a <div class="FTQUOTE"><begin quote>"Blow sunshine up my butt" </end quote> icon.
It can be used by posters who are only interested in positive reenforcement of their own opinion or for pleasant and encourging feedback to ensure that they are not disheartened by any negative content or comment and can continue within their own perceptions of reality.

"There, there dear, everything will be fine!" - my grandmother

"Hey you, get off of my cloud! " For those of you TOO YOUNG to know - Rolling Stones (not the rag, the band.)

oooo oooo --- how about a "NO SAKASUKA" icon? <img src="i/expressions/face-icon-small-happy.gif" border="0"> <img src="i/expressions/devil.gif" border="0"> <img src="i/expressions/beer.gif" border="0"> (Just kidding with you girl!)
 
N

NoExcuses

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

I suggest a <div class="FTQUOTE"><begin quote>"Blow sunshine up my butt" </end quote></div> icon.

It can be used by posters who are only interested in positive reenforcement of their own opinion or for pleasant and encourging feedback to ensure that they are not disheartened by any negative content or comment and can continue within their own perceptions of reality.



"There, there dear, everything will be fine!" - my grandmother



"Hey you, get off of my cloud! " For those of you TOO YOUNG to know - Rolling Stones (not the rag, the band.)



oooo oooo --- how about a "NO SAKASUKA" icon? <img src="i/expressions/face-icon-small-happy.gif" border="0"> <img src="i/expressions/devil.gif" border="0"> <img src="i/expressions/beer.gif" border="0"> (Just kidding with you girl!)</end quote></div>


Love it. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
N

NoExcuses

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

I suggest a <div class="FTQUOTE"><begin quote>"Blow sunshine up my butt" </end quote></div> icon.

It can be used by posters who are only interested in positive reenforcement of their own opinion or for pleasant and encourging feedback to ensure that they are not disheartened by any negative content or comment and can continue within their own perceptions of reality.



"There, there dear, everything will be fine!" - my grandmother



"Hey you, get off of my cloud! " For those of you TOO YOUNG to know - Rolling Stones (not the rag, the band.)



oooo oooo --- how about a "NO SAKASUKA" icon? <img src="i/expressions/face-icon-small-happy.gif" border="0"> <img src="i/expressions/devil.gif" border="0"> <img src="i/expressions/beer.gif" border="0"> (Just kidding with you girl!)</end quote></div>


Love it. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
N

NoExcuses

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

I suggest a <div class="FTQUOTE"><begin quote>"Blow sunshine up my butt" </end quote></div> icon.

It can be used by posters who are only interested in positive reenforcement of their own opinion or for pleasant and encourging feedback to ensure that they are not disheartened by any negative content or comment and can continue within their own perceptions of reality.



"There, there dear, everything will be fine!" - my grandmother



"Hey you, get off of my cloud! " For those of you TOO YOUNG to know - Rolling Stones (not the rag, the band.)



oooo oooo --- how about a "NO SAKASUKA" icon? <img src="i/expressions/face-icon-small-happy.gif" border="0"> <img src="i/expressions/devil.gif" border="0"> <img src="i/expressions/beer.gif" border="0"> (Just kidding with you girl!)</end quote></div>


Love it. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
N

NoExcuses

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

I suggest a <div class="FTQUOTE"><begin quote>"Blow sunshine up my butt" </end quote></div> icon.

It can be used by posters who are only interested in positive reenforcement of their own opinion or for pleasant and encourging feedback to ensure that they are not disheartened by any negative content or comment and can continue within their own perceptions of reality.



"There, there dear, everything will be fine!" - my grandmother



"Hey you, get off of my cloud! " For those of you TOO YOUNG to know - Rolling Stones (not the rag, the band.)



oooo oooo --- how about a "NO SAKASUKA" icon? <img src="i/expressions/face-icon-small-happy.gif" border="0"> <img src="i/expressions/devil.gif" border="0"> <img src="i/expressions/beer.gif" border="0"> (Just kidding with you girl!)</end quote></div>


Love it. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
N

NoExcuses

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

I suggest a <div class="FTQUOTE"><begin quote>"Blow sunshine up my butt" </end quote> icon.

It can be used by posters who are only interested in positive reenforcement of their own opinion or for pleasant and encourging feedback to ensure that they are not disheartened by any negative content or comment and can continue within their own perceptions of reality.



"There, there dear, everything will be fine!" - my grandmother



"Hey you, get off of my cloud! " For those of you TOO YOUNG to know - Rolling Stones (not the rag, the band.)



oooo oooo --- how about a "NO SAKASUKA" icon? <img src="i/expressions/face-icon-small-happy.gif" border="0"> <img src="i/expressions/devil.gif" border="0"> <img src="i/expressions/beer.gif" border="0"> (Just kidding with you girl!)</end quote>


Love it. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
N

NoExcuses

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

I suggest a <div class="FTQUOTE"><begin quote>"Blow sunshine up my butt" </end quote> icon.

It can be used by posters who are only interested in positive reenforcement of their own opinion or for pleasant and encourging feedback to ensure that they are not disheartened by any negative content or comment and can continue within their own perceptions of reality.



"There, there dear, everything will be fine!" - my grandmother



"Hey you, get off of my cloud! " For those of you TOO YOUNG to know - Rolling Stones (not the rag, the band.)



oooo oooo --- how about a "NO SAKASUKA" icon? <img src="i/expressions/face-icon-small-happy.gif" border="0"> <img src="i/expressions/devil.gif" border="0"> <img src="i/expressions/beer.gif" border="0"> (Just kidding with you girl!)</end quote>


Love it. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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