Why do you come to this site?

coltsfan715 · Oct 7, 2006

I stumbled across this site about a year ago. Actually around this time last year (maybe November). I was having a hard time emotionally with CF and feeling like I was fighting a losing battle - and even worse fighting with a bunch of people that didn't understand because they didn't have CF. I had been doing everything like my doctors said and still I kept getting sick. I had a partial lung collapse and the climb back from that has been horrendously long. I was in the armpit of that climb back when I started searching for info online.

I was doing general searches for alternative therapies and treatments for CF. I am not sure of the search I did that brought this site up, but something I searched for did. I came to this site and was amazed. I had not had many people with CF in my life in recent years (I had a hard time as my friends began passing away when I was younger so I withdrew from others with CF) and I found myself drawn to these people. They were people like me and surprisingly(to me) there were so many people my age and older. There were people that had been sick and had been able to climb out of the hole and there were people that were not that fortunate. I will say though .. there were enough people that had made the climb back up (at least a little bit) that it gave me hope.

That is part of the reason I started coming here. I will say when I first started frequenting the boards I was an anon. I posted and signed my name but I did not have a user ID for several months and to be honest I almost left never to return because of some of the people on here and their attitudes. I didn't check the boards for several weeks after about a month of coming around. Then I had a problem and I didn't know what to do about it ... I didn't know where to go to get more info - the ONLY place I could think of was "that site," so I came back. I posted my question and had a ton of response with good info that actually lefd to getting the problem resolved. I got a user ID shortly after that, and I have been coming around ever since.

I came here looking for info, looking for hope and inspiration that things could get better for me, and that I hadn't slipped on that banana peel to never get up off the ground. I stay because I have met some wonderful people, made wonderful friendships and truly care about the people on this site. I don't know what I would do if I were unable to come here anymore. I can honestly say I have NEVER been this attached to anything online before EVER, but this IS my other family .... I just hope I am NOT the drunk crazy cousin that I hear people talking about ... then again if I am I guess there ARE worse things lol.

Some people on here can be rough around the edges ... trust me I almost stopped coming here because of some of the people (they will remain nameless). Then I realized just because they are not all people I would hang out with in person doesn't mean I should deny myself the opportunity to get to know the other people on this site. It also doesn't mean I should deny myself the chance to get such great info from such qualified sources. We all have so much info to impart to one another, so many experiences to share, so much hope and joy to spread to one another (along with some harsh doses of reality at times) and also plenty of shoulders to go around when we need one to cry on. I love this place and the people in it - that is why I keep coming back.

Take Care,
Lindsey

coltsfan715 · Oct 7, 2006

I stumbled across this site about a year ago. Actually around this time last year (maybe November). I was having a hard time emotionally with CF and feeling like I was fighting a losing battle - and even worse fighting with a bunch of people that didn't understand because they didn't have CF. I had been doing everything like my doctors said and still I kept getting sick. I had a partial lung collapse and the climb back from that has been horrendously long. I was in the armpit of that climb back when I started searching for info online.

I was doing general searches for alternative therapies and treatments for CF. I am not sure of the search I did that brought this site up, but something I searched for did. I came to this site and was amazed. I had not had many people with CF in my life in recent years (I had a hard time as my friends began passing away when I was younger so I withdrew from others with CF) and I found myself drawn to these people. They were people like me and surprisingly(to me) there were so many people my age and older. There were people that had been sick and had been able to climb out of the hole and there were people that were not that fortunate. I will say though .. there were enough people that had made the climb back up (at least a little bit) that it gave me hope.

That is part of the reason I started coming here. I will say when I first started frequenting the boards I was an anon. I posted and signed my name but I did not have a user ID for several months and to be honest I almost left never to return because of some of the people on here and their attitudes. I didn't check the boards for several weeks after about a month of coming around. Then I had a problem and I didn't know what to do about it ... I didn't know where to go to get more info - the ONLY place I could think of was "that site," so I came back. I posted my question and had a ton of response with good info that actually lefd to getting the problem resolved. I got a user ID shortly after that, and I have been coming around ever since.

I came here looking for info, looking for hope and inspiration that things could get better for me, and that I hadn't slipped on that banana peel to never get up off the ground. I stay because I have met some wonderful people, made wonderful friendships and truly care about the people on this site. I don't know what I would do if I were unable to come here anymore. I can honestly say I have NEVER been this attached to anything online before EVER, but this IS my other family .... I just hope I am NOT the drunk crazy cousin that I hear people talking about ... then again if I am I guess there ARE worse things lol.

Some people on here can be rough around the edges ... trust me I almost stopped coming here because of some of the people (they will remain nameless). Then I realized just because they are not all people I would hang out with in person doesn't mean I should deny myself the opportunity to get to know the other people on this site. It also doesn't mean I should deny myself the chance to get such great info from such qualified sources. We all have so much info to impart to one another, so many experiences to share, so much hope and joy to spread to one another (along with some harsh doses of reality at times) and also plenty of shoulders to go around when we need one to cry on. I love this place and the people in it - that is why I keep coming back.

Take Care,
Lindsey

Diane · Oct 7, 2006

I started coming to this site a little after i had my second embolization to find out if anyone else had one and how they were doing.
I stayed because learned a lot about cf that i never knew even though i had it all my life. I always had a mild form of cf and never did any treatments till about 4 years ago after my embolizations. THATS when (after reading this board for a while) i realized i need to get my behind in gear and start taking better care of myself. I truely did not believe in the benefits of percussion or the vest ( mostly because i never brought much stuff up to begin with) But one day i read a book called "Psychosocial Aspects of cystic fibrosis" and THAT completely changed my mind forever ( and scared me).
Another reason i like this board is on here i can find someone with just about any symptom i think is wierd or just in my mind and volia' someone has it ! and knows what to do about it.
Theres also a lot of comfort (when things are going wrong) from everyone on the site and it helps to know we arent alone.
Yes there are fights, and disagreements, but like Melissa mentioned we all love each other in the end.
We need each other and we are there for each other when it counts.
I also have made a few friends that i cherish.
And last but not least, I LOVE helping others, especially parents with questions, because i can only imagine how afraid they are and seeing older cf patients on here living full lives, that has to give them great hope.

Diane · Oct 7, 2006

I started coming to this site a little after i had my second embolization to find out if anyone else had one and how they were doing.
I stayed because learned a lot about cf that i never knew even though i had it all my life. I always had a mild form of cf and never did any treatments till about 4 years ago after my embolizations. THATS when (after reading this board for a while) i realized i need to get my behind in gear and start taking better care of myself. I truely did not believe in the benefits of percussion or the vest ( mostly because i never brought much stuff up to begin with) But one day i read a book called "Psychosocial Aspects of cystic fibrosis" and THAT completely changed my mind forever ( and scared me).
Another reason i like this board is on here i can find someone with just about any symptom i think is wierd or just in my mind and volia' someone has it ! and knows what to do about it.
Theres also a lot of comfort (when things are going wrong) from everyone on the site and it helps to know we arent alone.
Yes there are fights, and disagreements, but like Melissa mentioned we all love each other in the end.
We need each other and we are there for each other when it counts.
I also have made a few friends that i cherish.
And last but not least, I LOVE helping others, especially parents with questions, because i can only imagine how afraid they are and seeing older cf patients on here living full lives, that has to give them great hope.

Diane · Oct 7, 2006

I started coming to this site a little after i had my second embolization to find out if anyone else had one and how they were doing.
I stayed because learned a lot about cf that i never knew even though i had it all my life. I always had a mild form of cf and never did any treatments till about 4 years ago after my embolizations. THATS when (after reading this board for a while) i realized i need to get my behind in gear and start taking better care of myself. I truely did not believe in the benefits of percussion or the vest ( mostly because i never brought much stuff up to begin with) But one day i read a book called "Psychosocial Aspects of cystic fibrosis" and THAT completely changed my mind forever ( and scared me).
Another reason i like this board is on here i can find someone with just about any symptom i think is wierd or just in my mind and volia' someone has it ! and knows what to do about it.
Theres also a lot of comfort (when things are going wrong) from everyone on the site and it helps to know we arent alone.
Yes there are fights, and disagreements, but like Melissa mentioned we all love each other in the end.
We need each other and we are there for each other when it counts.
I also have made a few friends that i cherish.
And last but not least, I LOVE helping others, especially parents with questions, because i can only imagine how afraid they are and seeing older cf patients on here living full lives, that has to give them great hope.

welshgirl · Oct 7, 2006

jane took the words right out of my mouth. ditto ditto ditto ditto etc.

welshgirl · Oct 7, 2006

jane took the words right out of my mouth. ditto ditto ditto ditto etc.

welshgirl · Oct 7, 2006

jane took the words right out of my mouth. ditto ditto ditto ditto etc.

lightNlife · Oct 7, 2006

I just found this site a few months ago. What drew me to it was how well organized the forums are. I had joined some yahoo groups for people with CF, but I didn't like the format. It wasn't nearly as interactive as this one.

This site gives me the benefit of processing my thoughts and feelings about CF a lot like I do when I write in my journal. Although I'm not particularly good at posting in an emotive style, I do feel validated just to know that others are on the same page I am.

I also come here to share a piece of my scientific expertise with the CF community. I have a vested interest in the connections between air quailty and respiratory health. My profession has afforded me the unique opportunity to be involved in studying air quality, carrying out epidemiological research and health risk assesments. Being able to apply that knowledge back to cystic fibrosis is important to me personally.

Lastly, I come here to encourage and be encouraged. I have connected with a few people in particular, and have garnered strength from my interactions with them. They tell me that they appreciate me as much as I appreciate them, and that makes it worthwhile.

I'm not here to be popular. I'm not here to be the "go-to-gal" for anything specific. I'm not claiming that my interpretation of something is 100% accurate at all times. I don't even claim to understand or agree with some of what gets discussed here. Even so, my experiences with CF are just as unique as the next person's, and if there is a connection to be made with someone else on this forum based on a common experience, opinion, or emotion, then I welcome it.

-Lauren
<a target=_blank class=ftalternatingbarlinklarge href="http://livingwellwithCF.blogspot.com">Breathing Deeply: My Life with CF</a>

lightNlife · Oct 7, 2006

I just found this site a few months ago. What drew me to it was how well organized the forums are. I had joined some yahoo groups for people with CF, but I didn't like the format. It wasn't nearly as interactive as this one.

This site gives me the benefit of processing my thoughts and feelings about CF a lot like I do when I write in my journal. Although I'm not particularly good at posting in an emotive style, I do feel validated just to know that others are on the same page I am.

I also come here to share a piece of my scientific expertise with the CF community. I have a vested interest in the connections between air quailty and respiratory health. My profession has afforded me the unique opportunity to be involved in studying air quality, carrying out epidemiological research and health risk assesments. Being able to apply that knowledge back to cystic fibrosis is important to me personally.

Lastly, I come here to encourage and be encouraged. I have connected with a few people in particular, and have garnered strength from my interactions with them. They tell me that they appreciate me as much as I appreciate them, and that makes it worthwhile.

I'm not here to be popular. I'm not here to be the "go-to-gal" for anything specific. I'm not claiming that my interpretation of something is 100% accurate at all times. I don't even claim to understand or agree with some of what gets discussed here. Even so, my experiences with CF are just as unique as the next person's, and if there is a connection to be made with someone else on this forum based on a common experience, opinion, or emotion, then I welcome it.

-Lauren
<a target=_blank class=ftalternatingbarlinklarge href="http://livingwellwithCF.blogspot.com">Breathing Deeply: My Life with CF</a>

lightNlife · Oct 7, 2006

I just found this site a few months ago. What drew me to it was how well organized the forums are. I had joined some yahoo groups for people with CF, but I didn't like the format. It wasn't nearly as interactive as this one.

This site gives me the benefit of processing my thoughts and feelings about CF a lot like I do when I write in my journal. Although I'm not particularly good at posting in an emotive style, I do feel validated just to know that others are on the same page I am.

I also come here to share a piece of my scientific expertise with the CF community. I have a vested interest in the connections between air quailty and respiratory health. My profession has afforded me the unique opportunity to be involved in studying air quality, carrying out epidemiological research and health risk assesments. Being able to apply that knowledge back to cystic fibrosis is important to me personally.

Lastly, I come here to encourage and be encouraged. I have connected with a few people in particular, and have garnered strength from my interactions with them. They tell me that they appreciate me as much as I appreciate them, and that makes it worthwhile.

I'm not here to be popular. I'm not here to be the "go-to-gal" for anything specific. I'm not claiming that my interpretation of something is 100% accurate at all times. I don't even claim to understand or agree with some of what gets discussed here. Even so, my experiences with CF are just as unique as the next person's, and if there is a connection to be made with someone else on this forum based on a common experience, opinion, or emotion, then I welcome it.

-Lauren
<a target=_blank class=ftalternatingbarlinklarge href="http://livingwellwithCF.blogspot.com">Breathing Deeply: My Life with CF</a>

kayleesgrandma · Oct 7, 2006

Well, I'd like to add something as to my reasons for joining, but everyone has said one thing or another that applies to me. I too came here while searching for answers for my granddaughter. I found such wonderful people, all fighting the same battle, but in different ways. It was the "spirit" of the people here that most amazed me. Some are fierce warriors, some are gentle warriors, some are wounded-in-the-heart warriors, some are old warriors, some are new. . . The mix makes for quite a "stew" sometimes, but there is always someone here who has got your back. When I first came here,I was also taken aback over some of the "drama" that occurred, but as I've been around longer I've seen that this is just part of the "current around here--it ebbs and flows and sometimes is a mighty wave. But I think the drama "spices" things up sometimes--it takes our minds off the normal matters here and gives us something to talk about. People here are just like "outside" the site--all of varied opinions. Mostly, who better understands the hopes, fears, joys, or sadness we sometimes feel, than someone else from here on the site? I am so thankful for the people here who have embraced me, and welcomed me, and accepted me. All of you have taught me the true meaning of having "an unconquered spirit."

kayleesgrandma · Oct 7, 2006

Well, I'd like to add something as to my reasons for joining, but everyone has said one thing or another that applies to me. I too came here while searching for answers for my granddaughter. I found such wonderful people, all fighting the same battle, but in different ways. It was the "spirit" of the people here that most amazed me. Some are fierce warriors, some are gentle warriors, some are wounded-in-the-heart warriors, some are old warriors, some are new. . . The mix makes for quite a "stew" sometimes, but there is always someone here who has got your back. When I first came here,I was also taken aback over some of the "drama" that occurred, but as I've been around longer I've seen that this is just part of the "current around here--it ebbs and flows and sometimes is a mighty wave. But I think the drama "spices" things up sometimes--it takes our minds off the normal matters here and gives us something to talk about. People here are just like "outside" the site--all of varied opinions. Mostly, who better understands the hopes, fears, joys, or sadness we sometimes feel, than someone else from here on the site? I am so thankful for the people here who have embraced me, and welcomed me, and accepted me. All of you have taught me the true meaning of having "an unconquered spirit."

kayleesgrandma · Oct 7, 2006

Well, I'd like to add something as to my reasons for joining, but everyone has said one thing or another that applies to me. I too came here while searching for answers for my granddaughter. I found such wonderful people, all fighting the same battle, but in different ways. It was the "spirit" of the people here that most amazed me. Some are fierce warriors, some are gentle warriors, some are wounded-in-the-heart warriors, some are old warriors, some are new. . . The mix makes for quite a "stew" sometimes, but there is always someone here who has got your back. When I first came here,I was also taken aback over some of the "drama" that occurred, but as I've been around longer I've seen that this is just part of the "current around here--it ebbs and flows and sometimes is a mighty wave. But I think the drama "spices" things up sometimes--it takes our minds off the normal matters here and gives us something to talk about. People here are just like "outside" the site--all of varied opinions. Mostly, who better understands the hopes, fears, joys, or sadness we sometimes feel, than someone else from here on the site? I am so thankful for the people here who have embraced me, and welcomed me, and accepted me. All of you have taught me the true meaning of having "an unconquered spirit."

yellowfrog · Oct 7, 2006

i am quite new here and i am delighted to have discovered the site
it is informative and fun too<img src="i/expressions/lips.gif" border="0"> my daughter is 13 and its the
first time i have been able to discuss her illness in a chit chat
kind of manor rather than all the guff the doctors give<img src="i/expressions/face-icon-small-confused.gif" border="0">
which has its place but not as comforting, i know one of my
postings seemed to cause abit of controversy but i got what i
needed from it. so thanks for being there<img src="i/expressions/face-icon-small-happy.gif" border="0">

yellowfrog · Oct 7, 2006

i am quite new here and i am delighted to have discovered the site
it is informative and fun too<img src="i/expressions/lips.gif" border="0"> my daughter is 13 and its the
first time i have been able to discuss her illness in a chit chat
kind of manor rather than all the guff the doctors give<img src="i/expressions/face-icon-small-confused.gif" border="0">
which has its place but not as comforting, i know one of my
postings seemed to cause abit of controversy but i got what i
needed from it. so thanks for being there<img src="i/expressions/face-icon-small-happy.gif" border="0">

yellowfrog · Oct 7, 2006

i am quite new here and i am delighted to have discovered the site
it is informative and fun too<img src="i/expressions/lips.gif" border="0"> my daughter is 13 and its the
first time i have been able to discuss her illness in a chit chat
kind of manor rather than all the guff the doctors give<img src="i/expressions/face-icon-small-confused.gif" border="0">
which has its place but not as comforting, i know one of my
postings seemed to cause abit of controversy but i got what i
needed from it. so thanks for being there<img src="i/expressions/face-icon-small-happy.gif" border="0">

princessjdc · Oct 7, 2006

i mainly get on here for support and to learn about more med or treatments that may be coming out, cause someone on here always finds new stuff about something.

princessjdc · Oct 7, 2006

i mainly get on here for support and to learn about more med or treatments that may be coming out, cause someone on here always finds new stuff about something.

princessjdc · Oct 7, 2006

i mainly get on here for support and to learn about more med or treatments that may be coming out, cause someone on here always finds new stuff about something.

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