Help and support

AnD · Jun 14, 2007

Hmm, I was seriously thinking of not posting, but I guess I will jump in, for better or worse...

I think that the best place you can start from when dealing with something like cf is at the bottom. Hear the worst, understand how awful it can be- just the hard, cold, unfeeling facts to get the reality grounded in. You can't know how to deal with something until you know just what you are dealing with.

Then, you take a deep breath (be it the next day or a few years later) and decide how you are going to make the best of a crappy situation. And choose the attitude you want to have about it to live with everday .

I think there are so many people (both parents of cfers and the patients themselves sometimes- I know, I was one of them <img src="i/expressions/face-icon-small-wink.gif" border="0"> ) who don't understand how important it is to fight- the disease, even the doctors sometimes, whatever and whomever it takes to try to keep one step ahead of this thing. Even on the days (or years) when it seems to be hiding.

I personally think that you will only get a "wake up call" from this site if you need it- if you have already dealt with the knowledge that this can (and quite possibly, will) kill you, then I don't think the "doom and gloom" really stands out as that- it is old news, just life with cf, just the facts, and the ups and downs we all go through.

I know it seems discouraging to give that kind of info to people who are new to the site (and cf), but I think it is better than "killing them with kindness" by just patting them on the back and telling them that everything will be okay. (Let me say I haven't noticed anyone here doing that, btw) Because it won't. It's cf- it will have bad times. Know that. Deal with it however you need to. Then get on with it. We'll be here for you.

I'm sorry if that sounds cold, but I wish someone had done that for me many years ago. All I kept hearing that I was so mild, an "exception", etc. Well, now I'm not quite the exception I was <img src="i/expressions/face-icon-small-wink.gif" border="0"> , and I really think that had I gotten a reality check somehow other than with a decline in my health, I could have been more proactive and demanding in my care. I needed the information to know why I had to take better care of myself. Knowledge is power!

And then you get on with being as happy and contented as anyone can with be this life. I have actually been encouraged by people who go through the "garbage" times, and come out the other side still optimistic and looking forward to the next thing.

The trick is, IMHO, finding the grace and empathy to know when to say it, when to leave it for later, when to leave it for someone else to say because they can say it better than you can (this is a hard one for me- cyber "tongue biting" lol) and how to say it so you don't just crush someone outright. And leave them hanging.

AnD · Jun 14, 2007

Hmm, I was seriously thinking of not posting, but I guess I will jump in, for better or worse...

I think that the best place you can start from when dealing with something like cf is at the bottom. Hear the worst, understand how awful it can be- just the hard, cold, unfeeling facts to get the reality grounded in. You can't know how to deal with something until you know just what you are dealing with.

Then, you take a deep breath (be it the next day or a few years later) and decide how you are going to make the best of a crappy situation. And choose the attitude you want to have about it to live with everday .

I think there are so many people (both parents of cfers and the patients themselves sometimes- I know, I was one of them <img src="i/expressions/face-icon-small-wink.gif" border="0"> ) who don't understand how important it is to fight- the disease, even the doctors sometimes, whatever and whomever it takes to try to keep one step ahead of this thing. Even on the days (or years) when it seems to be hiding.

I personally think that you will only get a "wake up call" from this site if you need it- if you have already dealt with the knowledge that this can (and quite possibly, will) kill you, then I don't think the "doom and gloom" really stands out as that- it is old news, just life with cf, just the facts, and the ups and downs we all go through.

I know it seems discouraging to give that kind of info to people who are new to the site (and cf), but I think it is better than "killing them with kindness" by just patting them on the back and telling them that everything will be okay. (Let me say I haven't noticed anyone here doing that, btw) Because it won't. It's cf- it will have bad times. Know that. Deal with it however you need to. Then get on with it. We'll be here for you.

I'm sorry if that sounds cold, but I wish someone had done that for me many years ago. All I kept hearing that I was so mild, an "exception", etc. Well, now I'm not quite the exception I was <img src="i/expressions/face-icon-small-wink.gif" border="0"> , and I really think that had I gotten a reality check somehow other than with a decline in my health, I could have been more proactive and demanding in my care. I needed the information to know why I had to take better care of myself. Knowledge is power!

And then you get on with being as happy and contented as anyone can with be this life. I have actually been encouraged by people who go through the "garbage" times, and come out the other side still optimistic and looking forward to the next thing.

The trick is, IMHO, finding the grace and empathy to know when to say it, when to leave it for later, when to leave it for someone else to say because they can say it better than you can (this is a hard one for me- cyber "tongue biting" lol) and how to say it so you don't just crush someone outright. And leave them hanging.

AnD · Jun 14, 2007

Hmm, I was seriously thinking of not posting, but I guess I will jump in, for better or worse...

I think that the best place you can start from when dealing with something like cf is at the bottom. Hear the worst, understand how awful it can be- just the hard, cold, unfeeling facts to get the reality grounded in. You can't know how to deal with something until you know just what you are dealing with.

Then, you take a deep breath (be it the next day or a few years later) and decide how you are going to make the best of a crappy situation. And choose the attitude you want to have about it to live with everday .

I think there are so many people (both parents of cfers and the patients themselves sometimes- I know, I was one of them <img src="i/expressions/face-icon-small-wink.gif" border="0"> ) who don't understand how important it is to fight- the disease, even the doctors sometimes, whatever and whomever it takes to try to keep one step ahead of this thing. Even on the days (or years) when it seems to be hiding.

I personally think that you will only get a "wake up call" from this site if you need it- if you have already dealt with the knowledge that this can (and quite possibly, will) kill you, then I don't think the "doom and gloom" really stands out as that- it is old news, just life with cf, just the facts, and the ups and downs we all go through.

I know it seems discouraging to give that kind of info to people who are new to the site (and cf), but I think it is better than "killing them with kindness" by just patting them on the back and telling them that everything will be okay. (Let me say I haven't noticed anyone here doing that, btw) Because it won't. It's cf- it will have bad times. Know that. Deal with it however you need to. Then get on with it. We'll be here for you.

I'm sorry if that sounds cold, but I wish someone had done that for me many years ago. All I kept hearing that I was so mild, an "exception", etc. Well, now I'm not quite the exception I was <img src="i/expressions/face-icon-small-wink.gif" border="0"> , and I really think that had I gotten a reality check somehow other than with a decline in my health, I could have been more proactive and demanding in my care. I needed the information to know why I had to take better care of myself. Knowledge is power!

And then you get on with being as happy and contented as anyone can with be this life. I have actually been encouraged by people who go through the "garbage" times, and come out the other side still optimistic and looking forward to the next thing.

The trick is, IMHO, finding the grace and empathy to know when to say it, when to leave it for later, when to leave it for someone else to say because they can say it better than you can (this is a hard one for me- cyber "tongue biting" lol) and how to say it so you don't just crush someone outright. And leave them hanging.

AnD · Jun 14, 2007

Hmm, I was seriously thinking of not posting, but I guess I will jump in, for better or worse...

I think that the best place you can start from when dealing with something like cf is at the bottom. Hear the worst, understand how awful it can be- just the hard, cold, unfeeling facts to get the reality grounded in. You can't know how to deal with something until you know just what you are dealing with.

Then, you take a deep breath (be it the next day or a few years later) and decide how you are going to make the best of a crappy situation. And choose the attitude you want to have about it to live with everday .

I think there are so many people (both parents of cfers and the patients themselves sometimes- I know, I was one of them <img src="i/expressions/face-icon-small-wink.gif" border="0"> ) who don't understand how important it is to fight- the disease, even the doctors sometimes, whatever and whomever it takes to try to keep one step ahead of this thing. Even on the days (or years) when it seems to be hiding.

I personally think that you will only get a "wake up call" from this site if you need it- if you have already dealt with the knowledge that this can (and quite possibly, will) kill you, then I don't think the "doom and gloom" really stands out as that- it is old news, just life with cf, just the facts, and the ups and downs we all go through.

I know it seems discouraging to give that kind of info to people who are new to the site (and cf), but I think it is better than "killing them with kindness" by just patting them on the back and telling them that everything will be okay. (Let me say I haven't noticed anyone here doing that, btw) Because it won't. It's cf- it will have bad times. Know that. Deal with it however you need to. Then get on with it. We'll be here for you.

I'm sorry if that sounds cold, but I wish someone had done that for me many years ago. All I kept hearing that I was so mild, an "exception", etc. Well, now I'm not quite the exception I was <img src="i/expressions/face-icon-small-wink.gif" border="0"> , and I really think that had I gotten a reality check somehow other than with a decline in my health, I could have been more proactive and demanding in my care. I needed the information to know why I had to take better care of myself. Knowledge is power!

And then you get on with being as happy and contented as anyone can with be this life. I have actually been encouraged by people who go through the "garbage" times, and come out the other side still optimistic and looking forward to the next thing.

The trick is, IMHO, finding the grace and empathy to know when to say it, when to leave it for later, when to leave it for someone else to say because they can say it better than you can (this is a hard one for me- cyber "tongue biting" lol) and how to say it so you don't just crush someone outright. And leave them hanging.

AnD · Jun 14, 2007

Hmm, I was seriously thinking of not posting, but I guess I will jump in, for better or worse...

I think that the best place you can start from when dealing with something like cf is at the bottom. Hear the worst, understand how awful it can be- just the hard, cold, unfeeling facts to get the reality grounded in. You can't know how to deal with something until you know just what you are dealing with.

Then, you take a deep breath (be it the next day or a few years later) and decide how you are going to make the best of a crappy situation. And choose the attitude you want to have about it to live with everday .

I think there are so many people (both parents of cfers and the patients themselves sometimes- I know, I was one of them <img src="i/expressions/face-icon-small-wink.gif" border="0"> ) who don't understand how important it is to fight- the disease, even the doctors sometimes, whatever and whomever it takes to try to keep one step ahead of this thing. Even on the days (or years) when it seems to be hiding.

I personally think that you will only get a "wake up call" from this site if you need it- if you have already dealt with the knowledge that this can (and quite possibly, will) kill you, then I don't think the "doom and gloom" really stands out as that- it is old news, just life with cf, just the facts, and the ups and downs we all go through.

I know it seems discouraging to give that kind of info to people who are new to the site (and cf), but I think it is better than "killing them with kindness" by just patting them on the back and telling them that everything will be okay. (Let me say I haven't noticed anyone here doing that, btw) Because it won't. It's cf- it will have bad times. Know that. Deal with it however you need to. Then get on with it. We'll be here for you.

I'm sorry if that sounds cold, but I wish someone had done that for me many years ago. All I kept hearing that I was so mild, an "exception", etc. Well, now I'm not quite the exception I was <img src="i/expressions/face-icon-small-wink.gif" border="0"> , and I really think that had I gotten a reality check somehow other than with a decline in my health, I could have been more proactive and demanding in my care. I needed the information to know why I had to take better care of myself. Knowledge is power!

And then you get on with being as happy and contented as anyone can with be this life. I have actually been encouraged by people who go through the "garbage" times, and come out the other side still optimistic and looking forward to the next thing.

The trick is, IMHO, finding the grace and empathy to know when to say it, when to leave it for later, when to leave it for someone else to say because they can say it better than you can (this is a hard one for me- cyber "tongue biting" lol) and how to say it so you don't just crush someone outright. And leave them hanging.

AnD · Jun 14, 2007

Hmm, I was seriously thinking of not posting, but I guess I will jump in, for better or worse...

I think that the best place you can start from when dealing with something like cf is at the bottom. Hear the worst, understand how awful it can be- just the hard, cold, unfeeling facts to get the reality grounded in. You can't know how to deal with something until you know just what you are dealing with.

Then, you take a deep breath (be it the next day or a few years later) and decide how you are going to make the best of a crappy situation. And choose the attitude you want to have about it to live with everday .

I think there are so many people (both parents of cfers and the patients themselves sometimes- I know, I was one of them <img src="i/expressions/face-icon-small-wink.gif" border="0"> ) who don't understand how important it is to fight- the disease, even the doctors sometimes, whatever and whomever it takes to try to keep one step ahead of this thing. Even on the days (or years) when it seems to be hiding.

I personally think that you will only get a "wake up call" from this site if you need it- if you have already dealt with the knowledge that this can (and quite possibly, will) kill you, then I don't think the "doom and gloom" really stands out as that- it is old news, just life with cf, just the facts, and the ups and downs we all go through.

I know it seems discouraging to give that kind of info to people who are new to the site (and cf), but I think it is better than "killing them with kindness" by just patting them on the back and telling them that everything will be okay. (Let me say I haven't noticed anyone here doing that, btw) Because it won't. It's cf- it will have bad times. Know that. Deal with it however you need to. Then get on with it. We'll be here for you.

I'm sorry if that sounds cold, but I wish someone had done that for me many years ago. All I kept hearing that I was so mild, an "exception", etc. Well, now I'm not quite the exception I was <img src="i/expressions/face-icon-small-wink.gif" border="0"> , and I really think that had I gotten a reality check somehow other than with a decline in my health, I could have been more proactive and demanding in my care. I needed the information to know why I had to take better care of myself. Knowledge is power!

And then you get on with being as happy and contented as anyone can with be this life. I have actually been encouraged by people who go through the "garbage" times, and come out the other side still optimistic and looking forward to the next thing.

The trick is, IMHO, finding the grace and empathy to know when to say it, when to leave it for later, when to leave it for someone else to say because they can say it better than you can (this is a hard one for me- cyber "tongue biting" lol) and how to say it so you don't just crush someone outright. And leave them hanging.

detroitislove · Jun 14, 2007

to be honest, when the debates and arguements start, my eyes cross. i only read your orignal message and none of the responses by others, but personally i agree with you.

i stay out of the arguements. i don't allow drama in my real life, i'm certainly not going to get caught up in an online forum drama.

cystics are notorious for being straight forward, which is fine, but being mean to people new to the disease or forum is completely unnessicary. i'm not incredibly optimistic about this disease, but handing out death sentences is nobody's place to do on a website.

the drama here makes me leave for months at a time, i dont know how everyone can get so wrapped up in the internet, and i spend hours a day surfing the web, but i dont let anyone on it upset my real life.

anyway, thanks for posting this. it needs to be said. over and over, because everytime it is said, the same people respond with the same crap they post in every other arguement thread.

it's okay, you and me can be happy while everyone else fights!
cheers <img src="i/expressions/face-icon-small-smile.gif" border="0">

detroitislove · Jun 14, 2007

to be honest, when the debates and arguements start, my eyes cross. i only read your orignal message and none of the responses by others, but personally i agree with you.

i stay out of the arguements. i don't allow drama in my real life, i'm certainly not going to get caught up in an online forum drama.

cystics are notorious for being straight forward, which is fine, but being mean to people new to the disease or forum is completely unnessicary. i'm not incredibly optimistic about this disease, but handing out death sentences is nobody's place to do on a website.

the drama here makes me leave for months at a time, i dont know how everyone can get so wrapped up in the internet, and i spend hours a day surfing the web, but i dont let anyone on it upset my real life.

anyway, thanks for posting this. it needs to be said. over and over, because everytime it is said, the same people respond with the same crap they post in every other arguement thread.

it's okay, you and me can be happy while everyone else fights!
cheers <img src="i/expressions/face-icon-small-smile.gif" border="0">

detroitislove · Jun 14, 2007

to be honest, when the debates and arguements start, my eyes cross. i only read your orignal message and none of the responses by others, but personally i agree with you.

i stay out of the arguements. i don't allow drama in my real life, i'm certainly not going to get caught up in an online forum drama.

cystics are notorious for being straight forward, which is fine, but being mean to people new to the disease or forum is completely unnessicary. i'm not incredibly optimistic about this disease, but handing out death sentences is nobody's place to do on a website.

the drama here makes me leave for months at a time, i dont know how everyone can get so wrapped up in the internet, and i spend hours a day surfing the web, but i dont let anyone on it upset my real life.

anyway, thanks for posting this. it needs to be said. over and over, because everytime it is said, the same people respond with the same crap they post in every other arguement thread.

it's okay, you and me can be happy while everyone else fights!
cheers <img src="i/expressions/face-icon-small-smile.gif" border="0">

detroitislove · Jun 14, 2007

to be honest, when the debates and arguements start, my eyes cross. i only read your orignal message and none of the responses by others, but personally i agree with you.

i stay out of the arguements. i don't allow drama in my real life, i'm certainly not going to get caught up in an online forum drama.

cystics are notorious for being straight forward, which is fine, but being mean to people new to the disease or forum is completely unnessicary. i'm not incredibly optimistic about this disease, but handing out death sentences is nobody's place to do on a website.

the drama here makes me leave for months at a time, i dont know how everyone can get so wrapped up in the internet, and i spend hours a day surfing the web, but i dont let anyone on it upset my real life.

anyway, thanks for posting this. it needs to be said. over and over, because everytime it is said, the same people respond with the same crap they post in every other arguement thread.

it's okay, you and me can be happy while everyone else fights!
cheers <img src="i/expressions/face-icon-small-smile.gif" border="0">

detroitislove · Jun 14, 2007

to be honest, when the debates and arguements start, my eyes cross. i only read your orignal message and none of the responses by others, but personally i agree with you.

i stay out of the arguements. i don't allow drama in my real life, i'm certainly not going to get caught up in an online forum drama.

cystics are notorious for being straight forward, which is fine, but being mean to people new to the disease or forum is completely unnessicary. i'm not incredibly optimistic about this disease, but handing out death sentences is nobody's place to do on a website.

the drama here makes me leave for months at a time, i dont know how everyone can get so wrapped up in the internet, and i spend hours a day surfing the web, but i dont let anyone on it upset my real life.

anyway, thanks for posting this. it needs to be said. over and over, because everytime it is said, the same people respond with the same crap they post in every other arguement thread.

it's okay, you and me can be happy while everyone else fights!
cheers <img src="i/expressions/face-icon-small-smile.gif" border="0">

detroitislove · Jun 14, 2007

to be honest, when the debates and arguements start, my eyes cross. i only read your orignal message and none of the responses by others, but personally i agree with you.

i stay out of the arguements. i don't allow drama in my real life, i'm certainly not going to get caught up in an online forum drama.

cystics are notorious for being straight forward, which is fine, but being mean to people new to the disease or forum is completely unnessicary. i'm not incredibly optimistic about this disease, but handing out death sentences is nobody's place to do on a website.

the drama here makes me leave for months at a time, i dont know how everyone can get so wrapped up in the internet, and i spend hours a day surfing the web, but i dont let anyone on it upset my real life.

anyway, thanks for posting this. it needs to be said. over and over, because everytime it is said, the same people respond with the same crap they post in every other arguement thread.

it's okay, you and me can be happy while everyone else fights!
cheers <img src="i/expressions/face-icon-small-smile.gif" border="0">

JennifersHope · Jun 14, 2007

Sometimes a little sunshine up the butt goes a long way.. ( light into darkness) Last time I checked the butt was a pretty dark place and a little sunshine would do some ppl a world of good.

Even if you don't believe in God...karma of what ever.. It is bad energy what ever you want to call it to live in darkness and to be constantly surrounded in death, thoughts of death and what ever other negative however true it may be reality you want to call it....e

I can't help but remember the saying the kids live up to our expectations or lack there of.. and I wonder what kind of damage it does to a child for the child to constantly be living with the knowledge that he or she is dying of a terminal disease.... I wonder if I was rasied differently, if I would have tried to be successful in life or me being me, would I have lived up to the expectations of the doctors and the norms and died before I was 18 like I was expected to...

I am glad I was not told when I was expected to die, I am glad my parents didn't know enough to keep me in such reality .. I didn't know I couldn't so I did...

JennifersHope · Jun 14, 2007

Sometimes a little sunshine up the butt goes a long way.. ( light into darkness) Last time I checked the butt was a pretty dark place and a little sunshine would do some ppl a world of good.

Even if you don't believe in God...karma of what ever.. It is bad energy what ever you want to call it to live in darkness and to be constantly surrounded in death, thoughts of death and what ever other negative however true it may be reality you want to call it....e

I can't help but remember the saying the kids live up to our expectations or lack there of.. and I wonder what kind of damage it does to a child for the child to constantly be living with the knowledge that he or she is dying of a terminal disease.... I wonder if I was rasied differently, if I would have tried to be successful in life or me being me, would I have lived up to the expectations of the doctors and the norms and died before I was 18 like I was expected to...

I am glad I was not told when I was expected to die, I am glad my parents didn't know enough to keep me in such reality .. I didn't know I couldn't so I did...

JennifersHope · Jun 14, 2007

Sometimes a little sunshine up the butt goes a long way.. ( light into darkness) Last time I checked the butt was a pretty dark place and a little sunshine would do some ppl a world of good.

Even if you don't believe in God...karma of what ever.. It is bad energy what ever you want to call it to live in darkness and to be constantly surrounded in death, thoughts of death and what ever other negative however true it may be reality you want to call it....e

I can't help but remember the saying the kids live up to our expectations or lack there of.. and I wonder what kind of damage it does to a child for the child to constantly be living with the knowledge that he or she is dying of a terminal disease.... I wonder if I was rasied differently, if I would have tried to be successful in life or me being me, would I have lived up to the expectations of the doctors and the norms and died before I was 18 like I was expected to...

I am glad I was not told when I was expected to die, I am glad my parents didn't know enough to keep me in such reality .. I didn't know I couldn't so I did...

JennifersHope · Jun 14, 2007

Sometimes a little sunshine up the butt goes a long way.. ( light into darkness) Last time I checked the butt was a pretty dark place and a little sunshine would do some ppl a world of good.

Even if you don't believe in God...karma of what ever.. It is bad energy what ever you want to call it to live in darkness and to be constantly surrounded in death, thoughts of death and what ever other negative however true it may be reality you want to call it....e

I can't help but remember the saying the kids live up to our expectations or lack there of.. and I wonder what kind of damage it does to a child for the child to constantly be living with the knowledge that he or she is dying of a terminal disease.... I wonder if I was rasied differently, if I would have tried to be successful in life or me being me, would I have lived up to the expectations of the doctors and the norms and died before I was 18 like I was expected to...

I am glad I was not told when I was expected to die, I am glad my parents didn't know enough to keep me in such reality .. I didn't know I couldn't so I did...

JennifersHope · Jun 14, 2007

Sometimes a little sunshine up the butt goes a long way.. ( light into darkness) Last time I checked the butt was a pretty dark place and a little sunshine would do some ppl a world of good.

Even if you don't believe in God...karma of what ever.. It is bad energy what ever you want to call it to live in darkness and to be constantly surrounded in death, thoughts of death and what ever other negative however true it may be reality you want to call it....e

I can't help but remember the saying the kids live up to our expectations or lack there of.. and I wonder what kind of damage it does to a child for the child to constantly be living with the knowledge that he or she is dying of a terminal disease.... I wonder if I was rasied differently, if I would have tried to be successful in life or me being me, would I have lived up to the expectations of the doctors and the norms and died before I was 18 like I was expected to...

I am glad I was not told when I was expected to die, I am glad my parents didn't know enough to keep me in such reality .. I didn't know I couldn't so I did...

JennifersHope · Jun 14, 2007

Sometimes a little sunshine up the butt goes a long way.. ( light into darkness) Last time I checked the butt was a pretty dark place and a little sunshine would do some ppl a world of good.

Even if you don't believe in God...karma of what ever.. It is bad energy what ever you want to call it to live in darkness and to be constantly surrounded in death, thoughts of death and what ever other negative however true it may be reality you want to call it....e

I can't help but remember the saying the kids live up to our expectations or lack there of.. and I wonder what kind of damage it does to a child for the child to constantly be living with the knowledge that he or she is dying of a terminal disease.... I wonder if I was rasied differently, if I would have tried to be successful in life or me being me, would I have lived up to the expectations of the doctors and the norms and died before I was 18 like I was expected to...

I am glad I was not told when I was expected to die, I am glad my parents didn't know enough to keep me in such reality .. I didn't know I couldn't so I did...

littledebbie · Jun 14, 2007

nevermind

littledebbie · Jun 14, 2007

nevermind

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