Why do you come to this site?

A

AmyO

New member
I have posted infrequently over these past few months.  I am
mostly a lurker, but have posted a few times to get some support as
I watched my father die from this lousy disease in August.  At
the time, I found this to be a very supportive understanding
environment.  Lately, I have found this site to be a little
tension filled.  I'm usually not one to speak up, but I feel
like I need to say something.  I apologize if this rambles.
 <br>
<br>
I have watched my father live and die with this disease for over 3
decades.  I learned so much from him in life and unfortunately
in death.  <br>
<br>
1.  I have learned that you should be extremely critical
of your own health and care.  He not once was critical about
anyone else as they faced a terminal illness, CF or not.
 There are so many variables, a persons overall health, a
person's support system, how a person deals with crisis, the path
they have already walked in life. . .  how can you tell
someone what they should do. . . . . even if they ask.<br>
2.  He was compassionate.  <br>
3.  He never fought.  Honestly, he said he was too darn
tired fighting the battle of his life, to be arguing over things
that in the larger scheme of life really didn't matter.<br>
4.  He had perspective.   <br>
<br>
I guess, I'm wondering why each of you take time out of your day to
visit this site.  I can tell you why I stop by.  I wanted
to know that I wasn't alone.  I wanted to learn about the last
stages of this disease and how to make my father more comfortable.
 I wanted to hear from Widows to know that one day, my mother
may smile again.  I wanted to hear from children of parents
that have died of this disease to learn how they fill the hole in
their heart after a parent has died.  I log in to find out how
to keep the memory of my father alive for myself and his
grandchildren.  <br>
<br>
I think this place should be a place where you have
an opportunity to talk about the triumphs and tragedies, where
we can learn about different types of medical management of this
disease, where we can laugh together, and of course cry and discuss
the crappy decisions we have to make in this life as a person with
CF or a loved one of a person with CF.  <br>
<br>
I guess now that my Dad is gone,  the world seems different
now and the conflict within it seems so sad and unnecessary.
 <br>
<br>
Amy O.<br>
<br>
 
A

AmyO

New member
I have posted infrequently over these past few months.  I am
mostly a lurker, but have posted a few times to get some support as
I watched my father die from this lousy disease in August.  At
the time, I found this to be a very supportive understanding
environment.  Lately, I have found this site to be a little
tension filled.  I'm usually not one to speak up, but I feel
like I need to say something.  I apologize if this rambles.
 <br>
<br>
I have watched my father live and die with this disease for over 3
decades.  I learned so much from him in life and unfortunately
in death.  <br>
<br>
1.  I have learned that you should be extremely critical
of your own health and care.  He not once was critical about
anyone else as they faced a terminal illness, CF or not.
 There are so many variables, a persons overall health, a
person's support system, how a person deals with crisis, the path
they have already walked in life. . .  how can you tell
someone what they should do. . . . . even if they ask.<br>
2.  He was compassionate.  <br>
3.  He never fought.  Honestly, he said he was too darn
tired fighting the battle of his life, to be arguing over things
that in the larger scheme of life really didn't matter.<br>
4.  He had perspective.   <br>
<br>
I guess, I'm wondering why each of you take time out of your day to
visit this site.  I can tell you why I stop by.  I wanted
to know that I wasn't alone.  I wanted to learn about the last
stages of this disease and how to make my father more comfortable.
 I wanted to hear from Widows to know that one day, my mother
may smile again.  I wanted to hear from children of parents
that have died of this disease to learn how they fill the hole in
their heart after a parent has died.  I log in to find out how
to keep the memory of my father alive for myself and his
grandchildren.  <br>
<br>
I think this place should be a place where you have
an opportunity to talk about the triumphs and tragedies, where
we can learn about different types of medical management of this
disease, where we can laugh together, and of course cry and discuss
the crappy decisions we have to make in this life as a person with
CF or a loved one of a person with CF.  <br>
<br>
I guess now that my Dad is gone,  the world seems different
now and the conflict within it seems so sad and unnecessary.
 <br>
<br>
Amy O.<br>
<br>
 
A

AmyO

New member
I have posted infrequently over these past few months.  I am
mostly a lurker, but have posted a few times to get some support as
I watched my father die from this lousy disease in August.  At
the time, I found this to be a very supportive understanding
environment.  Lately, I have found this site to be a little
tension filled.  I'm usually not one to speak up, but I feel
like I need to say something.  I apologize if this rambles.
 <br>
<br>
I have watched my father live and die with this disease for over 3
decades.  I learned so much from him in life and unfortunately
in death.  <br>
<br>
1.  I have learned that you should be extremely critical
of your own health and care.  He not once was critical about
anyone else as they faced a terminal illness, CF or not.
 There are so many variables, a persons overall health, a
person's support system, how a person deals with crisis, the path
they have already walked in life. . .  how can you tell
someone what they should do. . . . . even if they ask.<br>
2.  He was compassionate.  <br>
3.  He never fought.  Honestly, he said he was too darn
tired fighting the battle of his life, to be arguing over things
that in the larger scheme of life really didn't matter.<br>
4.  He had perspective.   <br>
<br>
I guess, I'm wondering why each of you take time out of your day to
visit this site.  I can tell you why I stop by.  I wanted
to know that I wasn't alone.  I wanted to learn about the last
stages of this disease and how to make my father more comfortable.
 I wanted to hear from Widows to know that one day, my mother
may smile again.  I wanted to hear from children of parents
that have died of this disease to learn how they fill the hole in
their heart after a parent has died.  I log in to find out how
to keep the memory of my father alive for myself and his
grandchildren.  <br>
<br>
I think this place should be a place where you have
an opportunity to talk about the triumphs and tragedies, where
we can learn about different types of medical management of this
disease, where we can laugh together, and of course cry and discuss
the crappy decisions we have to make in this life as a person with
CF or a loved one of a person with CF.  <br>
<br>
I guess now that my Dad is gone,  the world seems different
now and the conflict within it seems so sad and unnecessary.
 <br>
<br>
Amy O.<br>
<br>
 
A

anonymous

New member
Hi Amy,

Glad to see you're still with us.

I know to "newbies" it can sometimes seem like this site is full of drama and confrontation. Some topics are controversial by nature and others turn into controversy. On any given day, someone can take exception to what you've written. The written word is up for interpretation and sometimes what is posted is interpreted as the opposite of what the writer meant. For a lot of us regulars (old timers), it's more like we are a family. People post topics and respond to topics and not all of us agree. That's the way families are. I think a lot of people see the "drama" on here an immeadiately assume it's a harsh environment. True, many of our discussions can become heated, but this doesn't mean we don't support one another. It just means we disagree. Some choose not to post their opinions, while others temper them, and others are brutally honest. We're all individuals with our own opinions and I for one welcome everyone's opinion even if they are wrong (LOL).

Now, as to why I come here...

It started as a simple need for advice and has turned into an extension of my family. I check in multiple times a day to see if maybe I can help someone, learn something new, and just to see how my "family" is doing.

Claudette (aka CFHockeymom)
 
A

anonymous

New member
Hi Amy,

Glad to see you're still with us.

I know to "newbies" it can sometimes seem like this site is full of drama and confrontation. Some topics are controversial by nature and others turn into controversy. On any given day, someone can take exception to what you've written. The written word is up for interpretation and sometimes what is posted is interpreted as the opposite of what the writer meant. For a lot of us regulars (old timers), it's more like we are a family. People post topics and respond to topics and not all of us agree. That's the way families are. I think a lot of people see the "drama" on here an immeadiately assume it's a harsh environment. True, many of our discussions can become heated, but this doesn't mean we don't support one another. It just means we disagree. Some choose not to post their opinions, while others temper them, and others are brutally honest. We're all individuals with our own opinions and I for one welcome everyone's opinion even if they are wrong (LOL).

Now, as to why I come here...

It started as a simple need for advice and has turned into an extension of my family. I check in multiple times a day to see if maybe I can help someone, learn something new, and just to see how my "family" is doing.

Claudette (aka CFHockeymom)
 
A

anonymous

New member
Hi Amy,

Glad to see you're still with us.

I know to "newbies" it can sometimes seem like this site is full of drama and confrontation. Some topics are controversial by nature and others turn into controversy. On any given day, someone can take exception to what you've written. The written word is up for interpretation and sometimes what is posted is interpreted as the opposite of what the writer meant. For a lot of us regulars (old timers), it's more like we are a family. People post topics and respond to topics and not all of us agree. That's the way families are. I think a lot of people see the "drama" on here an immeadiately assume it's a harsh environment. True, many of our discussions can become heated, but this doesn't mean we don't support one another. It just means we disagree. Some choose not to post their opinions, while others temper them, and others are brutally honest. We're all individuals with our own opinions and I for one welcome everyone's opinion even if they are wrong (LOL).

Now, as to why I come here...

It started as a simple need for advice and has turned into an extension of my family. I check in multiple times a day to see if maybe I can help someone, learn something new, and just to see how my "family" is doing.

Claudette (aka CFHockeymom)
 
A

anonymous

New member
Hi CFHockeyMom (Claudette)

That's a great way to explain it to me. As families go, this one's pretty tame! <img src="i/expressions/face-icon-small-smile.gif" border="0"> I do agree with the written word being so hard to decifer the way the reader intends. I also think that it's just so instant. My rule of thumb, if I read, hear etc. something I sit on it for a day

Have a great weekend!

AmyO
 
A

anonymous

New member
Hi CFHockeyMom (Claudette)

That's a great way to explain it to me. As families go, this one's pretty tame! <img src="i/expressions/face-icon-small-smile.gif" border="0"> I do agree with the written word being so hard to decifer the way the reader intends. I also think that it's just so instant. My rule of thumb, if I read, hear etc. something I sit on it for a day

Have a great weekend!

AmyO
 
A

anonymous

New member
Hi CFHockeyMom (Claudette)

That's a great way to explain it to me. As families go, this one's pretty tame! <img src="i/expressions/face-icon-small-smile.gif" border="0"> I do agree with the written word being so hard to decifer the way the reader intends. I also think that it's just so instant. My rule of thumb, if I read, hear etc. something I sit on it for a day

Have a great weekend!

AmyO
 
L

Landy

New member
Good question.
I have never analyzed why I come here but now that you've asked I would say that I come here for support, to learn of newest advances/treatment options in the CF world, and to offer support where I can. I've even met a few people here that I now consider to be my online friends, which is wonderful. I also come here to converse with people that have been in my shoes and can truly understand where I'm coming from. I suppose it is somewhat habit-forming too.
 
L

Landy

New member
Good question.
I have never analyzed why I come here but now that you've asked I would say that I come here for support, to learn of newest advances/treatment options in the CF world, and to offer support where I can. I've even met a few people here that I now consider to be my online friends, which is wonderful. I also come here to converse with people that have been in my shoes and can truly understand where I'm coming from. I suppose it is somewhat habit-forming too.
 
L

Landy

New member
Good question.
I have never analyzed why I come here but now that you've asked I would say that I come here for support, to learn of newest advances/treatment options in the CF world, and to offer support where I can. I've even met a few people here that I now consider to be my online friends, which is wonderful. I also come here to converse with people that have been in my shoes and can truly understand where I'm coming from. I suppose it is somewhat habit-forming too.
 
S

Scarlett81

New member
It's funny b/c just yesterday I was thinking of posting the same exact thread.

I come here for support. This is supposed to be a support community. Yes knowlegde and facts are an important part-but ultimately why do people join health-related chat groups?-Support.
My point? It hasn't felt too supportive lately. I'm sorry-I do have some people that I regularly speak to, and I thankyou for your support. (even if I don't always agree with it) But I'm not referring to you right now. I'm speaking more in general.
I spend more time thinking about how stressful certain things are to me-than in the good old days when I'd be in the shower thinking, 'man-thank God I found this place. Finally people that understand.'
Not trying to be a downer to anyone, sorry if I sound that way. And without breaking confidentiality-there a quite a few people that feel similar to me. But understandably they don't speak up, maybe b/c they're afraid they'll be jumped on. I don't mean any sarcasm in ANY thing I say here-I really am speaking from the heart.
For the people that say-this is a public community or I will say whatever I want, or things like that-yes that's true. It is public and you do have the right to say what you want. But making your point, or 'trying to gain knowledge' or whatever you'd like to call it-isn't always the most important thing. The most important thing is-we are all living with a serious difficult disease. Whether you're a patient or a caregiver or a spouse or friend-we're all in the same boat. You need support, and I do too.
And its not about manners at all. It's about support.
 
S

Scarlett81

New member
It's funny b/c just yesterday I was thinking of posting the same exact thread.

I come here for support. This is supposed to be a support community. Yes knowlegde and facts are an important part-but ultimately why do people join health-related chat groups?-Support.
My point? It hasn't felt too supportive lately. I'm sorry-I do have some people that I regularly speak to, and I thankyou for your support. (even if I don't always agree with it) But I'm not referring to you right now. I'm speaking more in general.
I spend more time thinking about how stressful certain things are to me-than in the good old days when I'd be in the shower thinking, 'man-thank God I found this place. Finally people that understand.'
Not trying to be a downer to anyone, sorry if I sound that way. And without breaking confidentiality-there a quite a few people that feel similar to me. But understandably they don't speak up, maybe b/c they're afraid they'll be jumped on. I don't mean any sarcasm in ANY thing I say here-I really am speaking from the heart.
For the people that say-this is a public community or I will say whatever I want, or things like that-yes that's true. It is public and you do have the right to say what you want. But making your point, or 'trying to gain knowledge' or whatever you'd like to call it-isn't always the most important thing. The most important thing is-we are all living with a serious difficult disease. Whether you're a patient or a caregiver or a spouse or friend-we're all in the same boat. You need support, and I do too.
And its not about manners at all. It's about support.
 
S

Scarlett81

New member
It's funny b/c just yesterday I was thinking of posting the same exact thread.

I come here for support. This is supposed to be a support community. Yes knowlegde and facts are an important part-but ultimately why do people join health-related chat groups?-Support.
My point? It hasn't felt too supportive lately. I'm sorry-I do have some people that I regularly speak to, and I thankyou for your support. (even if I don't always agree with it) But I'm not referring to you right now. I'm speaking more in general.
I spend more time thinking about how stressful certain things are to me-than in the good old days when I'd be in the shower thinking, 'man-thank God I found this place. Finally people that understand.'
Not trying to be a downer to anyone, sorry if I sound that way. And without breaking confidentiality-there a quite a few people that feel similar to me. But understandably they don't speak up, maybe b/c they're afraid they'll be jumped on. I don't mean any sarcasm in ANY thing I say here-I really am speaking from the heart.
For the people that say-this is a public community or I will say whatever I want, or things like that-yes that's true. It is public and you do have the right to say what you want. But making your point, or 'trying to gain knowledge' or whatever you'd like to call it-isn't always the most important thing. The most important thing is-we are all living with a serious difficult disease. Whether you're a patient or a caregiver or a spouse or friend-we're all in the same boat. You need support, and I do too.
And its not about manners at all. It's about support.
 
J

Jane

Digital opinion leader
I come here to learn more about the disease my boys are progressing into.

I come here to listen to stories of how others deal with their daily stresses because it helps me know there are others like me and my family.

I come here because most people I know don't understand what it is like to raise children with CF.

I come here because I learn more about living with CF from interesting, intelligent, compassionate, people with Cf than our doctors.

I come here because it makes me feel good when I can offer some helpful advice to others.

I come here because sometimes watching other people's drama is easier than watching my own.
 
J

Jane

Digital opinion leader
I come here to learn more about the disease my boys are progressing into.

I come here to listen to stories of how others deal with their daily stresses because it helps me know there are others like me and my family.

I come here because most people I know don't understand what it is like to raise children with CF.

I come here because I learn more about living with CF from interesting, intelligent, compassionate, people with Cf than our doctors.

I come here because it makes me feel good when I can offer some helpful advice to others.

I come here because sometimes watching other people's drama is easier than watching my own.
 
You must log in or register to reply here.
Top