Help and support

K

katyf13

New member
This site is great in a lot of ways. I truly love it but I take a lot of breaks from it. We got so much love and support when Mike was so sick (you can't get much worse than 14%) and through his transplant. I've learned a lot of facts and I have gotten to care for a great number of people I've never met!
The realty is, if you get a group of people together, in a forum or in real life, there are all types of personalities and all types of communication styles. There are a lot of people to learn from, but not necessarily people you would invite over for a slumber party. I think the majority of us are "hopeful realists", looking forward to the future, but living every moment in the present. We have good days and bad days. Supportive days and cranky days. When you start to feel overwhelmed and angry about a post, I suggest taking a break from the site for a few days or a week. When you come back, it will have blown over and you can jump back in. I know I get stressed out when I come to the site too much!
 
K

katyf13

New member
This site is great in a lot of ways. I truly love it but I take a lot of breaks from it. We got so much love and support when Mike was so sick (you can't get much worse than 14%) and through his transplant. I've learned a lot of facts and I have gotten to care for a great number of people I've never met!
The realty is, if you get a group of people together, in a forum or in real life, there are all types of personalities and all types of communication styles. There are a lot of people to learn from, but not necessarily people you would invite over for a slumber party. I think the majority of us are "hopeful realists", looking forward to the future, but living every moment in the present. We have good days and bad days. Supportive days and cranky days. When you start to feel overwhelmed and angry about a post, I suggest taking a break from the site for a few days or a week. When you come back, it will have blown over and you can jump back in. I know I get stressed out when I come to the site too much!
 
K

katyf13

New member
This site is great in a lot of ways. I truly love it but I take a lot of breaks from it. We got so much love and support when Mike was so sick (you can't get much worse than 14%) and through his transplant. I've learned a lot of facts and I have gotten to care for a great number of people I've never met!
The realty is, if you get a group of people together, in a forum or in real life, there are all types of personalities and all types of communication styles. There are a lot of people to learn from, but not necessarily people you would invite over for a slumber party. I think the majority of us are "hopeful realists", looking forward to the future, but living every moment in the present. We have good days and bad days. Supportive days and cranky days. When you start to feel overwhelmed and angry about a post, I suggest taking a break from the site for a few days or a week. When you come back, it will have blown over and you can jump back in. I know I get stressed out when I come to the site too much!
 
K

katyf13

New member
This site is great in a lot of ways. I truly love it but I take a lot of breaks from it. We got so much love and support when Mike was so sick (you can't get much worse than 14%) and through his transplant. I've learned a lot of facts and I have gotten to care for a great number of people I've never met!
The realty is, if you get a group of people together, in a forum or in real life, there are all types of personalities and all types of communication styles. There are a lot of people to learn from, but not necessarily people you would invite over for a slumber party. I think the majority of us are "hopeful realists", looking forward to the future, but living every moment in the present. We have good days and bad days. Supportive days and cranky days. When you start to feel overwhelmed and angry about a post, I suggest taking a break from the site for a few days or a week. When you come back, it will have blown over and you can jump back in. I know I get stressed out when I come to the site too much!
 
M

my65roses4me

New member
<u><b>Please dont think that I am talking about the people that have lost or are going to lose their loved ones and that they shouldn't come here to discuss it and get support. Thats what this site is all about! </b></u>

Ok you are both right about some people not knowing the facts about this disease and maybe they come here not knowing and then find out. But for those that dont know much (like my example thread) isn't there a light way to introduce them to the facts of CF. I mean read her post and then read my response.
Do you see anything hidden or lied about? I stated the facts but did not bombard her with all the info possible.

I am not saying that for those that dont know anything that they shouldn't find out the facts some how I am just saying there are nicer more polite ways of informing them.

I cant imagine that when I was born, the Dr bombarding my mom with every tid bit of info about cf. That would of scared the hell out of my mom.
He told her the cold hard facts and that is warranted. But to give someone too much info all at once can make for a bad situation.

All I am saying is that there is nothing wrong with a little sensitivity and tact around here ya know.

I am not a sensitve person usually and can take blows as well as give them. But that thread really made me sad and I felt bad for that girl. She seemed to not know much about cf and was asking about it and was bombarded with all kinds of info.
I do not believe in lying or hiding the truth but some tact would be helpful.

When I was first dating my husband I waited about three weeks or so to tell him about my cf. When I first brought it up to him I told him that even though I am not "sick" right now, that doesn't mean I will always be that way and the average life span of a cfer is 35 (i think it was at the time) and that I probably would never be able to have kids. We talked about it further and I answered his questions open and honestly.
But if he came here he would of heard from this forum, "we shouldn't get married for financial reasons, that my bills are going to be something extraordinary and I will die from this disease".
Yes that is all true but isn't that a little abrupt? Isn't the way I explained it to him the right way?

I just think that the conversations on here become a little too cold!

I guess thats what you get from being on the internet and not around "real people".

But does it have to be that way???????

You are right Katy maybe I need a break!!!! Thanks your post was very nice. I think I will heed your advice.
 
M

my65roses4me

New member
<u><b>Please dont think that I am talking about the people that have lost or are going to lose their loved ones and that they shouldn't come here to discuss it and get support. Thats what this site is all about! </b></u>

Ok you are both right about some people not knowing the facts about this disease and maybe they come here not knowing and then find out. But for those that dont know much (like my example thread) isn't there a light way to introduce them to the facts of CF. I mean read her post and then read my response.
Do you see anything hidden or lied about? I stated the facts but did not bombard her with all the info possible.

I am not saying that for those that dont know anything that they shouldn't find out the facts some how I am just saying there are nicer more polite ways of informing them.

I cant imagine that when I was born, the Dr bombarding my mom with every tid bit of info about cf. That would of scared the hell out of my mom.
He told her the cold hard facts and that is warranted. But to give someone too much info all at once can make for a bad situation.

All I am saying is that there is nothing wrong with a little sensitivity and tact around here ya know.

I am not a sensitve person usually and can take blows as well as give them. But that thread really made me sad and I felt bad for that girl. She seemed to not know much about cf and was asking about it and was bombarded with all kinds of info.
I do not believe in lying or hiding the truth but some tact would be helpful.

When I was first dating my husband I waited about three weeks or so to tell him about my cf. When I first brought it up to him I told him that even though I am not "sick" right now, that doesn't mean I will always be that way and the average life span of a cfer is 35 (i think it was at the time) and that I probably would never be able to have kids. We talked about it further and I answered his questions open and honestly.
But if he came here he would of heard from this forum, "we shouldn't get married for financial reasons, that my bills are going to be something extraordinary and I will die from this disease".
Yes that is all true but isn't that a little abrupt? Isn't the way I explained it to him the right way?

I just think that the conversations on here become a little too cold!

I guess thats what you get from being on the internet and not around "real people".

But does it have to be that way???????

You are right Katy maybe I need a break!!!! Thanks your post was very nice. I think I will heed your advice.
 
M

my65roses4me

New member
<u><b>Please dont think that I am talking about the people that have lost or are going to lose their loved ones and that they shouldn't come here to discuss it and get support. Thats what this site is all about! </b></u>

Ok you are both right about some people not knowing the facts about this disease and maybe they come here not knowing and then find out. But for those that dont know much (like my example thread) isn't there a light way to introduce them to the facts of CF. I mean read her post and then read my response.
Do you see anything hidden or lied about? I stated the facts but did not bombard her with all the info possible.

I am not saying that for those that dont know anything that they shouldn't find out the facts some how I am just saying there are nicer more polite ways of informing them.

I cant imagine that when I was born, the Dr bombarding my mom with every tid bit of info about cf. That would of scared the hell out of my mom.
He told her the cold hard facts and that is warranted. But to give someone too much info all at once can make for a bad situation.

All I am saying is that there is nothing wrong with a little sensitivity and tact around here ya know.

I am not a sensitve person usually and can take blows as well as give them. But that thread really made me sad and I felt bad for that girl. She seemed to not know much about cf and was asking about it and was bombarded with all kinds of info.
I do not believe in lying or hiding the truth but some tact would be helpful.

When I was first dating my husband I waited about three weeks or so to tell him about my cf. When I first brought it up to him I told him that even though I am not "sick" right now, that doesn't mean I will always be that way and the average life span of a cfer is 35 (i think it was at the time) and that I probably would never be able to have kids. We talked about it further and I answered his questions open and honestly.
But if he came here he would of heard from this forum, "we shouldn't get married for financial reasons, that my bills are going to be something extraordinary and I will die from this disease".
Yes that is all true but isn't that a little abrupt? Isn't the way I explained it to him the right way?

I just think that the conversations on here become a little too cold!

I guess thats what you get from being on the internet and not around "real people".

But does it have to be that way???????

You are right Katy maybe I need a break!!!! Thanks your post was very nice. I think I will heed your advice.
 
M

my65roses4me

New member
<u><b>Please dont think that I am talking about the people that have lost or are going to lose their loved ones and that they shouldn't come here to discuss it and get support. Thats what this site is all about! </b></u>

Ok you are both right about some people not knowing the facts about this disease and maybe they come here not knowing and then find out. But for those that dont know much (like my example thread) isn't there a light way to introduce them to the facts of CF. I mean read her post and then read my response.
Do you see anything hidden or lied about? I stated the facts but did not bombard her with all the info possible.

I am not saying that for those that dont know anything that they shouldn't find out the facts some how I am just saying there are nicer more polite ways of informing them.

I cant imagine that when I was born, the Dr bombarding my mom with every tid bit of info about cf. That would of scared the hell out of my mom.
He told her the cold hard facts and that is warranted. But to give someone too much info all at once can make for a bad situation.

All I am saying is that there is nothing wrong with a little sensitivity and tact around here ya know.

I am not a sensitve person usually and can take blows as well as give them. But that thread really made me sad and I felt bad for that girl. She seemed to not know much about cf and was asking about it and was bombarded with all kinds of info.
I do not believe in lying or hiding the truth but some tact would be helpful.

When I was first dating my husband I waited about three weeks or so to tell him about my cf. When I first brought it up to him I told him that even though I am not "sick" right now, that doesn't mean I will always be that way and the average life span of a cfer is 35 (i think it was at the time) and that I probably would never be able to have kids. We talked about it further and I answered his questions open and honestly.
But if he came here he would of heard from this forum, "we shouldn't get married for financial reasons, that my bills are going to be something extraordinary and I will die from this disease".
Yes that is all true but isn't that a little abrupt? Isn't the way I explained it to him the right way?

I just think that the conversations on here become a little too cold!

I guess thats what you get from being on the internet and not around "real people".

But does it have to be that way???????

You are right Katy maybe I need a break!!!! Thanks your post was very nice. I think I will heed your advice.
 
M

my65roses4me

New member
<u><b>Please dont think that I am talking about the people that have lost or are going to lose their loved ones and that they shouldn't come here to discuss it and get support. Thats what this site is all about! </b></u>

Ok you are both right about some people not knowing the facts about this disease and maybe they come here not knowing and then find out. But for those that dont know much (like my example thread) isn't there a light way to introduce them to the facts of CF. I mean read her post and then read my response.
Do you see anything hidden or lied about? I stated the facts but did not bombard her with all the info possible.

I am not saying that for those that dont know anything that they shouldn't find out the facts some how I am just saying there are nicer more polite ways of informing them.

I cant imagine that when I was born, the Dr bombarding my mom with every tid bit of info about cf. That would of scared the hell out of my mom.
He told her the cold hard facts and that is warranted. But to give someone too much info all at once can make for a bad situation.

All I am saying is that there is nothing wrong with a little sensitivity and tact around here ya know.

I am not a sensitve person usually and can take blows as well as give them. But that thread really made me sad and I felt bad for that girl. She seemed to not know much about cf and was asking about it and was bombarded with all kinds of info.
I do not believe in lying or hiding the truth but some tact would be helpful.

When I was first dating my husband I waited about three weeks or so to tell him about my cf. When I first brought it up to him I told him that even though I am not "sick" right now, that doesn't mean I will always be that way and the average life span of a cfer is 35 (i think it was at the time) and that I probably would never be able to have kids. We talked about it further and I answered his questions open and honestly.
But if he came here he would of heard from this forum, "we shouldn't get married for financial reasons, that my bills are going to be something extraordinary and I will die from this disease".
Yes that is all true but isn't that a little abrupt? Isn't the way I explained it to him the right way?

I just think that the conversations on here become a little too cold!

I guess thats what you get from being on the internet and not around "real people".

But does it have to be that way???????

You are right Katy maybe I need a break!!!! Thanks your post was very nice. I think I will heed your advice.
 
M

my65roses4me

New member
<u><b>Please dont think that I am talking about the people that have lost or are going to lose their loved ones and that they shouldn't come here to discuss it and get support. Thats what this site is all about! </b></u>

Ok you are both right about some people not knowing the facts about this disease and maybe they come here not knowing and then find out. But for those that dont know much (like my example thread) isn't there a light way to introduce them to the facts of CF. I mean read her post and then read my response.
Do you see anything hidden or lied about? I stated the facts but did not bombard her with all the info possible.

I am not saying that for those that dont know anything that they shouldn't find out the facts some how I am just saying there are nicer more polite ways of informing them.

I cant imagine that when I was born, the Dr bombarding my mom with every tid bit of info about cf. That would of scared the hell out of my mom.
He told her the cold hard facts and that is warranted. But to give someone too much info all at once can make for a bad situation.

All I am saying is that there is nothing wrong with a little sensitivity and tact around here ya know.

I am not a sensitve person usually and can take blows as well as give them. But that thread really made me sad and I felt bad for that girl. She seemed to not know much about cf and was asking about it and was bombarded with all kinds of info.
I do not believe in lying or hiding the truth but some tact would be helpful.

When I was first dating my husband I waited about three weeks or so to tell him about my cf. When I first brought it up to him I told him that even though I am not "sick" right now, that doesn't mean I will always be that way and the average life span of a cfer is 35 (i think it was at the time) and that I probably would never be able to have kids. We talked about it further and I answered his questions open and honestly.
But if he came here he would of heard from this forum, "we shouldn't get married for financial reasons, that my bills are going to be something extraordinary and I will die from this disease".
Yes that is all true but isn't that a little abrupt? Isn't the way I explained it to him the right way?

I just think that the conversations on here become a little too cold!

I guess thats what you get from being on the internet and not around "real people".

But does it have to be that way???????

You are right Katy maybe I need a break!!!! Thanks your post was very nice. I think I will heed your advice.
 
K

katyf13

New member
And for the record, as a person in love with a cf'er, it doesn't matter to me what the lifespan is or if we can get legally married or if we can have kids. I love him and I'll figure out the rest. I take advice on here but I also use my head and do my own research. That's what I mean by hopeful realist I guess...
 
K

katyf13

New member
And for the record, as a person in love with a cf'er, it doesn't matter to me what the lifespan is or if we can get legally married or if we can have kids. I love him and I'll figure out the rest. I take advice on here but I also use my head and do my own research. That's what I mean by hopeful realist I guess...
 
K

katyf13

New member
And for the record, as a person in love with a cf'er, it doesn't matter to me what the lifespan is or if we can get legally married or if we can have kids. I love him and I'll figure out the rest. I take advice on here but I also use my head and do my own research. That's what I mean by hopeful realist I guess...
 
K

katyf13

New member
And for the record, as a person in love with a cf'er, it doesn't matter to me what the lifespan is or if we can get legally married or if we can have kids. I love him and I'll figure out the rest. I take advice on here but I also use my head and do my own research. That's what I mean by hopeful realist I guess...
 
K

katyf13

New member
And for the record, as a person in love with a cf'er, it doesn't matter to me what the lifespan is or if we can get legally married or if we can have kids. I love him and I'll figure out the rest. I take advice on here but I also use my head and do my own research. That's what I mean by hopeful realist I guess...
 
K

katyf13

New member
And for the record, as a person in love with a cf'er, it doesn't matter to me what the lifespan is or if we can get legally married or if we can have kids. I love him and I'll figure out the rest. I take advice on here but I also use my head and do my own research. That's what I mean by hopeful realist I guess...
 
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