Introducing someone to CF

Isabella · Aug 8, 2008

Hi everyone!!!

Short Intro: I'm 21, diagnosed at birth, Fev1 is 65%.

So. I'm trying to think of a creative way to show my future husband what it's like to have cf (/ what it will be like for him to live with someone with cf).
My grandpa suggested to my mom that he read "breathing for a living". and that got me thinking about all the different materials out there to explain cf to someone.

i want to balance the serious with the fun. because i have a morbid sense of humor and i joke about cf and death a lot. i bought him the "excuse me, i have to go beat my wife" shirt (i havent given it to him yet).

I am looking for ideas of what would be good. Here are some I have, any thing that you think should be cut? This is a lot of info, i dont want to totally overwhelm him (but he does know i'm planning on doing this so it wont be a surprise, and i'm not worried about scaring him off).

I want to show him the transplant process of a girl who posted it all on her livejournal (cfkitty for those who may know her). The pictures and journal entries that she shared helped me a lot. It answered so many of the unknowns about transplants. I think that is a very real, raw view of what this disease can do.

I was going to make a collage of pictures of all the cystics I know who have passed away.

I have a video of when a local tv show did a special on a friend of mine who died waiting for transplant.

i want to include frankie abernathy (because i have self destructive tendencies), but that will be difficult since that season of the real world is not on dvd.

i want to get bob flanagans movie + pain journal (but i havent seen/read that so i'd have to review it first)

but thats a lot of stuff! and i dont want it to all be serious. like the shirt isn't. and then just like ...hospital things...masks, latex gloves, hospital lube, stethescope (all stuff i have laying around my room).

and then. to round out the introduction i think there are some things he needs to experience. like: drinking a scandishake (i'm thinking strawberry...the nastiest flavor in my opinion), doing the vest, watching me access my port, staying a night in the hospital with me, going through a round of ivs with me, infusing the ivs for me, being trained to give me cpt, and of course...hospital sex.

obviously the hospital stuff and ivs, i'll just have to wait for those things to happen. but the rest i can prepare and show him.

any other clever/cute ideas? i need more fun things, i think there is plenty of serious, probably too much (ideas on what to leave out?).

Like i said, he knows this is coming. he knows about cf in general ways (it's gonna kill me, i'm tired alot, i do meds all the time). And he says he doesnt care. But if he is going to fight this disease with me, i want him to know what i know, so that we are on the same page.

Any and all ideas will be appreciated, thanks guys!!

Isabella · Aug 8, 2008

Hi everyone!!!

Short Intro: I'm 21, diagnosed at birth, Fev1 is 65%.

So. I'm trying to think of a creative way to show my future husband what it's like to have cf (/ what it will be like for him to live with someone with cf).
My grandpa suggested to my mom that he read "breathing for a living". and that got me thinking about all the different materials out there to explain cf to someone.

i want to balance the serious with the fun. because i have a morbid sense of humor and i joke about cf and death a lot. i bought him the "excuse me, i have to go beat my wife" shirt (i havent given it to him yet).

I am looking for ideas of what would be good. Here are some I have, any thing that you think should be cut? This is a lot of info, i dont want to totally overwhelm him (but he does know i'm planning on doing this so it wont be a surprise, and i'm not worried about scaring him off).

I want to show him the transplant process of a girl who posted it all on her livejournal (cfkitty for those who may know her). The pictures and journal entries that she shared helped me a lot. It answered so many of the unknowns about transplants. I think that is a very real, raw view of what this disease can do.

I was going to make a collage of pictures of all the cystics I know who have passed away.

I have a video of when a local tv show did a special on a friend of mine who died waiting for transplant.

i want to include frankie abernathy (because i have self destructive tendencies), but that will be difficult since that season of the real world is not on dvd.

i want to get bob flanagans movie + pain journal (but i havent seen/read that so i'd have to review it first)

but thats a lot of stuff! and i dont want it to all be serious. like the shirt isn't. and then just like ...hospital things...masks, latex gloves, hospital lube, stethescope (all stuff i have laying around my room).

and then. to round out the introduction i think there are some things he needs to experience. like: drinking a scandishake (i'm thinking strawberry...the nastiest flavor in my opinion), doing the vest, watching me access my port, staying a night in the hospital with me, going through a round of ivs with me, infusing the ivs for me, being trained to give me cpt, and of course...hospital sex.

obviously the hospital stuff and ivs, i'll just have to wait for those things to happen. but the rest i can prepare and show him.

any other clever/cute ideas? i need more fun things, i think there is plenty of serious, probably too much (ideas on what to leave out?).

Like i said, he knows this is coming. he knows about cf in general ways (it's gonna kill me, i'm tired alot, i do meds all the time). And he says he doesnt care. But if he is going to fight this disease with me, i want him to know what i know, so that we are on the same page.

Any and all ideas will be appreciated, thanks guys!!

Isabella · Aug 8, 2008

Hi everyone!!!

Short Intro: I'm 21, diagnosed at birth, Fev1 is 65%.

So. I'm trying to think of a creative way to show my future husband what it's like to have cf (/ what it will be like for him to live with someone with cf).
My grandpa suggested to my mom that he read "breathing for a living". and that got me thinking about all the different materials out there to explain cf to someone.

i want to balance the serious with the fun. because i have a morbid sense of humor and i joke about cf and death a lot. i bought him the "excuse me, i have to go beat my wife" shirt (i havent given it to him yet).

I am looking for ideas of what would be good. Here are some I have, any thing that you think should be cut? This is a lot of info, i dont want to totally overwhelm him (but he does know i'm planning on doing this so it wont be a surprise, and i'm not worried about scaring him off).

I want to show him the transplant process of a girl who posted it all on her livejournal (cfkitty for those who may know her). The pictures and journal entries that she shared helped me a lot. It answered so many of the unknowns about transplants. I think that is a very real, raw view of what this disease can do.

I was going to make a collage of pictures of all the cystics I know who have passed away.

I have a video of when a local tv show did a special on a friend of mine who died waiting for transplant.

i want to include frankie abernathy (because i have self destructive tendencies), but that will be difficult since that season of the real world is not on dvd.

i want to get bob flanagans movie + pain journal (but i havent seen/read that so i'd have to review it first)

but thats a lot of stuff! and i dont want it to all be serious. like the shirt isn't. and then just like ...hospital things...masks, latex gloves, hospital lube, stethescope (all stuff i have laying around my room).

and then. to round out the introduction i think there are some things he needs to experience. like: drinking a scandishake (i'm thinking strawberry...the nastiest flavor in my opinion), doing the vest, watching me access my port, staying a night in the hospital with me, going through a round of ivs with me, infusing the ivs for me, being trained to give me cpt, and of course...hospital sex.

obviously the hospital stuff and ivs, i'll just have to wait for those things to happen. but the rest i can prepare and show him.

any other clever/cute ideas? i need more fun things, i think there is plenty of serious, probably too much (ideas on what to leave out?).

Like i said, he knows this is coming. he knows about cf in general ways (it's gonna kill me, i'm tired alot, i do meds all the time). And he says he doesnt care. But if he is going to fight this disease with me, i want him to know what i know, so that we are on the same page.

Any and all ideas will be appreciated, thanks guys!!

Isabella · Aug 8, 2008

Hi everyone!!!

Short Intro: I'm 21, diagnosed at birth, Fev1 is 65%.

So. I'm trying to think of a creative way to show my future husband what it's like to have cf (/ what it will be like for him to live with someone with cf).
My grandpa suggested to my mom that he read "breathing for a living". and that got me thinking about all the different materials out there to explain cf to someone.

i want to balance the serious with the fun. because i have a morbid sense of humor and i joke about cf and death a lot. i bought him the "excuse me, i have to go beat my wife" shirt (i havent given it to him yet).

I am looking for ideas of what would be good. Here are some I have, any thing that you think should be cut? This is a lot of info, i dont want to totally overwhelm him (but he does know i'm planning on doing this so it wont be a surprise, and i'm not worried about scaring him off).

I want to show him the transplant process of a girl who posted it all on her livejournal (cfkitty for those who may know her). The pictures and journal entries that she shared helped me a lot. It answered so many of the unknowns about transplants. I think that is a very real, raw view of what this disease can do.

I was going to make a collage of pictures of all the cystics I know who have passed away.

I have a video of when a local tv show did a special on a friend of mine who died waiting for transplant.

i want to include frankie abernathy (because i have self destructive tendencies), but that will be difficult since that season of the real world is not on dvd.

i want to get bob flanagans movie + pain journal (but i havent seen/read that so i'd have to review it first)

but thats a lot of stuff! and i dont want it to all be serious. like the shirt isn't. and then just like ...hospital things...masks, latex gloves, hospital lube, stethescope (all stuff i have laying around my room).

and then. to round out the introduction i think there are some things he needs to experience. like: drinking a scandishake (i'm thinking strawberry...the nastiest flavor in my opinion), doing the vest, watching me access my port, staying a night in the hospital with me, going through a round of ivs with me, infusing the ivs for me, being trained to give me cpt, and of course...hospital sex.

obviously the hospital stuff and ivs, i'll just have to wait for those things to happen. but the rest i can prepare and show him.

any other clever/cute ideas? i need more fun things, i think there is plenty of serious, probably too much (ideas on what to leave out?).

Like i said, he knows this is coming. he knows about cf in general ways (it's gonna kill me, i'm tired alot, i do meds all the time). And he says he doesnt care. But if he is going to fight this disease with me, i want him to know what i know, so that we are on the same page.

Any and all ideas will be appreciated, thanks guys!!

Isabella · Aug 8, 2008

Hi everyone!!!
 
 Short Intro: I'm 21, diagnosed at birth, Fev1 is 65%.
 
 So. I'm trying to think of a creative way to show my future husband what it's like to have cf (/ what it will be like for him to live with someone with cf).
 My grandpa suggested to my mom that he read "breathing for a living". and that got me thinking about all the different materials out there to explain cf to someone.
 
 i want to balance the serious with the fun. because i have a morbid sense of humor and i joke about cf and death a lot. i bought him the "excuse me, i have to go beat my wife" shirt (i havent given it to him yet).
 
 I am looking for ideas of what would be good. Here are some I have, any thing that you think should be cut? This is a lot of info, i dont want to totally overwhelm him (but he does know i'm planning on doing this so it wont be a surprise, and i'm not worried about scaring him off).
 
 I want to show him the transplant process of a girl who posted it all on her livejournal (cfkitty for those who may know her). The pictures and journal entries that she shared helped me a lot. It answered so many of the unknowns about transplants. I think that is a very real, raw view of what this disease can do.
 
 I was going to make a collage of pictures of all the cystics I know who have passed away.
 
 I have a video of when a local tv show did a special on a friend of mine who died waiting for transplant.
 
 i want to include frankie abernathy (because i have self destructive tendencies), but that will be difficult since that season of the real world is not on dvd.
 
 i want to get bob flanagans movie + pain journal (but i havent seen/read that so i'd have to review it first)
 
 but thats a lot of stuff! and i dont want it to all be serious. like the shirt isn't. and then just like ...hospital things...masks, latex gloves, hospital lube, stethescope (all stuff i have laying around my room).
 
 and then. to round out the introduction i think there are some things he needs to experience. like: drinking a scandishake (i'm thinking strawberry...the nastiest flavor in my opinion), doing the vest, watching me access my port, staying a night in the hospital with me, going through a round of ivs with me, infusing the ivs for me, being trained to give me cpt, and of course...hospital sex.
 
 obviously the hospital stuff and ivs, i'll just have to wait for those things to happen. but the rest i can prepare and show him.
 
 any other clever/cute ideas? i need more fun things, i think there is plenty of serious, probably too much (ideas on what to leave out?).
 
 
 Like i said, he knows this is coming. he knows about cf in general ways (it's gonna kill me, i'm tired alot, i do meds all the time). And he says he doesnt care. But if he is going to fight this disease with me, i want him to know what i know, so that we are on the same page.
 
 Any and all ideas will be appreciated, thanks guys!!

pnhuffman · Aug 8, 2008