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Introducing someone to CF

T

Transplantmommy

New member
I agree with Kelli that no matter what you do, he will not know what it's like until you go through it together. I started dating my future husband when I was 17 and I wasn't really all that sick yet. I was in the hospital here and there for infections but nothing serious. He didn't completely understand everything until we moved in together and he saw exactly what I had to do every single moment of every day. I started doing IV's at home when I was like 19 (which he experienced with me). He was with me the first time that I ever coughed up blood, got my first port, more hospitalizations.....and this was all before we got married. He just had to go through it with me! Two years after we got married is when we started the Tx process for my lungs and liver and I say we because he really had to go through it too. We had a child in 2006 and then I had my transplants in 2007 and I don't think anything could have prepared us for the experiences that we have gone through until we actually had to go through them.

I think that it is great that you are doing all of this to try to help him understand. Maybe it will help...who knows? I just believe, like Kelli, that I was really lucky in finding a man who is awesome enough to handle all of this!

PS-You want some humor? Tell him that he is lucky to have you because salty girls taste better! LOL
 
T

Transplantmommy

New member
I agree with Kelli that no matter what you do, he will not know what it's like until you go through it together. I started dating my future husband when I was 17 and I wasn't really all that sick yet. I was in the hospital here and there for infections but nothing serious. He didn't completely understand everything until we moved in together and he saw exactly what I had to do every single moment of every day. I started doing IV's at home when I was like 19 (which he experienced with me). He was with me the first time that I ever coughed up blood, got my first port, more hospitalizations.....and this was all before we got married. He just had to go through it with me! Two years after we got married is when we started the Tx process for my lungs and liver and I say we because he really had to go through it too. We had a child in 2006 and then I had my transplants in 2007 and I don't think anything could have prepared us for the experiences that we have gone through until we actually had to go through them.

I think that it is great that you are doing all of this to try to help him understand. Maybe it will help...who knows? I just believe, like Kelli, that I was really lucky in finding a man who is awesome enough to handle all of this!

PS-You want some humor? Tell him that he is lucky to have you because salty girls taste better! LOL
 
T

Transplantmommy

New member
I agree with Kelli that no matter what you do, he will not know what it's like until you go through it together. I started dating my future husband when I was 17 and I wasn't really all that sick yet. I was in the hospital here and there for infections but nothing serious. He didn't completely understand everything until we moved in together and he saw exactly what I had to do every single moment of every day. I started doing IV's at home when I was like 19 (which he experienced with me). He was with me the first time that I ever coughed up blood, got my first port, more hospitalizations.....and this was all before we got married. He just had to go through it with me! Two years after we got married is when we started the Tx process for my lungs and liver and I say we because he really had to go through it too. We had a child in 2006 and then I had my transplants in 2007 and I don't think anything could have prepared us for the experiences that we have gone through until we actually had to go through them.

I think that it is great that you are doing all of this to try to help him understand. Maybe it will help...who knows? I just believe, like Kelli, that I was really lucky in finding a man who is awesome enough to handle all of this!

PS-You want some humor? Tell him that he is lucky to have you because salty girls taste better! LOL
 
T

Transplantmommy

New member
I agree with Kelli that no matter what you do, he will not know what it's like until you go through it together. I started dating my future husband when I was 17 and I wasn't really all that sick yet. I was in the hospital here and there for infections but nothing serious. He didn't completely understand everything until we moved in together and he saw exactly what I had to do every single moment of every day. I started doing IV's at home when I was like 19 (which he experienced with me). He was with me the first time that I ever coughed up blood, got my first port, more hospitalizations.....and this was all before we got married. He just had to go through it with me! Two years after we got married is when we started the Tx process for my lungs and liver and I say we because he really had to go through it too. We had a child in 2006 and then I had my transplants in 2007 and I don't think anything could have prepared us for the experiences that we have gone through until we actually had to go through them.

I think that it is great that you are doing all of this to try to help him understand. Maybe it will help...who knows? I just believe, like Kelli, that I was really lucky in finding a man who is awesome enough to handle all of this!

PS-You want some humor? Tell him that he is lucky to have you because salty girls taste better! LOL
 
T

Transplantmommy

New member
I agree with Kelli that no matter what you do, he will not know what it's like until you go through it together. I started dating my future husband when I was 17 and I wasn't really all that sick yet. I was in the hospital here and there for infections but nothing serious. He didn't completely understand everything until we moved in together and he saw exactly what I had to do every single moment of every day. I started doing IV's at home when I was like 19 (which he experienced with me). He was with me the first time that I ever coughed up blood, got my first port, more hospitalizations.....and this was all before we got married. He just had to go through it with me! Two years after we got married is when we started the Tx process for my lungs and liver and I say we because he really had to go through it too. We had a child in 2006 and then I had my transplants in 2007 and I don't think anything could have prepared us for the experiences that we have gone through until we actually had to go through them.
<br />
<br />I think that it is great that you are doing all of this to try to help him understand. Maybe it will help...who knows? I just believe, like Kelli, that I was really lucky in finding a man who is awesome enough to handle all of this!
<br />
<br />PS-You want some humor? Tell him that he is lucky to have you because salty girls taste better! LOL
 
M

MicheleGazelle

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Isabella</b></i>

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





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?).

</end quote></div>

I would leave out the collage of dead people.

For funny:
I always compare using a nebulizer to "breathing like Darth Vader".

When my sister had her first mastectomy and I cared for her afterwards, my sons were creeped out by all the tubes hanging out of her. My sister made some joke about The Borg to help put them at ease.

One of the supplements I currently take is a white powder and very expensive. I have begun referring to it as "cocaine".
 
M

MicheleGazelle

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Isabella</b></i>

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





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?).

</end quote></div>

I would leave out the collage of dead people.

For funny:
I always compare using a nebulizer to "breathing like Darth Vader".

When my sister had her first mastectomy and I cared for her afterwards, my sons were creeped out by all the tubes hanging out of her. My sister made some joke about The Borg to help put them at ease.

One of the supplements I currently take is a white powder and very expensive. I have begun referring to it as "cocaine".
 
M

MicheleGazelle

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Isabella</b></i>

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





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?).

</end quote></div>

I would leave out the collage of dead people.

For funny:
I always compare using a nebulizer to "breathing like Darth Vader".

When my sister had her first mastectomy and I cared for her afterwards, my sons were creeped out by all the tubes hanging out of her. My sister made some joke about The Borg to help put them at ease.

One of the supplements I currently take is a white powder and very expensive. I have begun referring to it as "cocaine".
 
M

MicheleGazelle

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Isabella</b></i>

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





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?).

</end quote>

I would leave out the collage of dead people.

For funny:
I always compare using a nebulizer to "breathing like Darth Vader".

When my sister had her first mastectomy and I cared for her afterwards, my sons were creeped out by all the tubes hanging out of her. My sister made some joke about The Borg to help put them at ease.

One of the supplements I currently take is a white powder and very expensive. I have begun referring to it as "cocaine".
 
M

MicheleGazelle

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Isabella</b></i>
<br />
<br />I was going to make a collage of pictures of all the cystics I know who have passed away.
<br />
<br />
<br />
<br />
<br />
<br />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?).
<br />
<br /></end quote>
<br />
<br />I would leave out the collage of dead people.
<br />
<br />For funny:
<br />I always compare using a nebulizer to "breathing like Darth Vader".
<br />
<br />When my sister had her first mastectomy and I cared for her afterwards, my sons were creeped out by all the tubes hanging out of her. My sister made some joke about The Borg to help put them at ease.
<br />
<br />One of the supplements I currently take is a white powder and very expensive. I have begun referring to it as "cocaine".
<br />
 
I

Isabella

Guest
thanks for the responses!

I agree that first hand experience is the best for both of us, because neither of us can tell the future. i cant show him what some else went through and say "this is how it will be for me".

but i want him to have all the information i have. i think it's totally unfair to glaze over what i know of this disease and the possibilities of the worst case scenarios, because........well i just think he should know.

of course i could say "well i have a lung disease and i take a lot of meds" but there is so much more information that i have.

he researched cf online the night we met, and got a lot of information. but at the same time, he doesnt know all the personal web addresses to look for. i can provide him with that.

anyway thanks for the responses! i will keep searching.

and yes! salty girls do taste better! i'm going to get him a sticker with that on it =)
 
I

Isabella

Guest
thanks for the responses!

I agree that first hand experience is the best for both of us, because neither of us can tell the future. i cant show him what some else went through and say "this is how it will be for me".

but i want him to have all the information i have. i think it's totally unfair to glaze over what i know of this disease and the possibilities of the worst case scenarios, because........well i just think he should know.

of course i could say "well i have a lung disease and i take a lot of meds" but there is so much more information that i have.

he researched cf online the night we met, and got a lot of information. but at the same time, he doesnt know all the personal web addresses to look for. i can provide him with that.

anyway thanks for the responses! i will keep searching.

and yes! salty girls do taste better! i'm going to get him a sticker with that on it =)
 
I

Isabella

Guest
thanks for the responses!

I agree that first hand experience is the best for both of us, because neither of us can tell the future. i cant show him what some else went through and say "this is how it will be for me".

but i want him to have all the information i have. i think it's totally unfair to glaze over what i know of this disease and the possibilities of the worst case scenarios, because........well i just think he should know.

of course i could say "well i have a lung disease and i take a lot of meds" but there is so much more information that i have.

he researched cf online the night we met, and got a lot of information. but at the same time, he doesnt know all the personal web addresses to look for. i can provide him with that.

anyway thanks for the responses! i will keep searching.

and yes! salty girls do taste better! i'm going to get him a sticker with that on it =)
 
I

Isabella

Guest
thanks for the responses!

I agree that first hand experience is the best for both of us, because neither of us can tell the future. i cant show him what some else went through and say "this is how it will be for me".

but i want him to have all the information i have. i think it's totally unfair to glaze over what i know of this disease and the possibilities of the worst case scenarios, because........well i just think he should know.

of course i could say "well i have a lung disease and i take a lot of meds" but there is so much more information that i have.

he researched cf online the night we met, and got a lot of information. but at the same time, he doesnt know all the personal web addresses to look for. i can provide him with that.

anyway thanks for the responses! i will keep searching.

and yes! salty girls do taste better! i'm going to get him a sticker with that on it =)
 
I

Isabella

Guest
thanks for the responses!
<br />
<br />I agree that first hand experience is the best for both of us, because neither of us can tell the future. i cant show him what some else went through and say "this is how it will be for me".
<br />
<br />but i want him to have all the information i have. i think it's totally unfair to glaze over what i know of this disease and the possibilities of the worst case scenarios, because........well i just think he should know.
<br />
<br />of course i could say "well i have a lung disease and i take a lot of meds" but there is so much more information that i have.
<br />
<br />he researched cf online the night we met, and got a lot of information. but at the same time, he doesnt know all the personal web addresses to look for. i can provide him with that.
<br />
<br />anyway thanks for the responses! i will keep searching.
<br />
<br />and yes! salty girls do taste better! i'm going to get him a sticker with that on it =)
 
M

mamerth

New member
The shirt sounds great. Focusing on death would not be a good thing (especially for my hubby).

My hubby thought he knew what he was getting into while we dated (PICC line, surgery, learning to "beat" my back when something got stuck and gong to dr appointments with me). Not until we got married did the reality sink it-- dealing with a high risk pregnancy (non-planned pregnancy), hemopytsis, my crashing fatigue levels, depression and him watching the disease progress right before his eyes.

Allow him to experience life with CF with you. Education is a process (for my hubby a gentle but visual daily process).

We are getting used to the death component together --- DENIAL for both of us. I share blogs with my hubby and he loves it (especially the CF husband site).

Enjoy married life. It is awesome!!
 
M

mamerth

New member
The shirt sounds great. Focusing on death would not be a good thing (especially for my hubby).

My hubby thought he knew what he was getting into while we dated (PICC line, surgery, learning to "beat" my back when something got stuck and gong to dr appointments with me). Not until we got married did the reality sink it-- dealing with a high risk pregnancy (non-planned pregnancy), hemopytsis, my crashing fatigue levels, depression and him watching the disease progress right before his eyes.

Allow him to experience life with CF with you. Education is a process (for my hubby a gentle but visual daily process).

We are getting used to the death component together --- DENIAL for both of us. I share blogs with my hubby and he loves it (especially the CF husband site).

Enjoy married life. It is awesome!!
 
M

mamerth

New member
The shirt sounds great. Focusing on death would not be a good thing (especially for my hubby).

My hubby thought he knew what he was getting into while we dated (PICC line, surgery, learning to "beat" my back when something got stuck and gong to dr appointments with me). Not until we got married did the reality sink it-- dealing with a high risk pregnancy (non-planned pregnancy), hemopytsis, my crashing fatigue levels, depression and him watching the disease progress right before his eyes.

Allow him to experience life with CF with you. Education is a process (for my hubby a gentle but visual daily process).

We are getting used to the death component together --- DENIAL for both of us. I share blogs with my hubby and he loves it (especially the CF husband site).

Enjoy married life. It is awesome!!
 
M

mamerth

New member
The shirt sounds great. Focusing on death would not be a good thing (especially for my hubby).

My hubby thought he knew what he was getting into while we dated (PICC line, surgery, learning to "beat" my back when something got stuck and gong to dr appointments with me). Not until we got married did the reality sink it-- dealing with a high risk pregnancy (non-planned pregnancy), hemopytsis, my crashing fatigue levels, depression and him watching the disease progress right before his eyes.

Allow him to experience life with CF with you. Education is a process (for my hubby a gentle but visual daily process).

We are getting used to the death component together --- DENIAL for both of us. I share blogs with my hubby and he loves it (especially the CF husband site).

Enjoy married life. It is awesome!!
 
M

mamerth

New member
The shirt sounds great. Focusing on death would not be a good thing (especially for my hubby).
<br />
<br />My hubby thought he knew what he was getting into while we dated (PICC line, surgery, learning to "beat" my back when something got stuck and gong to dr appointments with me). Not until we got married did the reality sink it-- dealing with a high risk pregnancy (non-planned pregnancy), hemopytsis, my crashing fatigue levels, depression and him watching the disease progress right before his eyes.
<br />
<br />Allow him to experience life with CF with you. Education is a process (for my hubby a gentle but visual daily process).
<br />
<br />We are getting used to the death component together --- DENIAL for both of us. I share blogs with my hubby and he loves it (especially the CF husband site).
<br />
<br />Enjoy married life. It is awesome!!
 
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