Re: Follow Up To My Relationship Issue (Feeling pretty low right now)

May 26, 2006

I understand your fear...it's okay. but, my friend- if this girl is

so wonderful, why are you assuming she will " freak " and all kinds of

negative outcomes will occur including you won't get married.

Believe in the best response, but give her room to feel whatever and

stop beating yourself up ... we all do the best we can with what we

know...she will too...trust...you're probably hurting yourself more

by holding back and waiting,,, anxiety is not good for anyone, much

less PSCers.... take a deep breath, take your time, forgive

yourself, and trust her ... and if it doesn't work out, then she's

not the one. EVERYONE has health challenges in their lifetime -

it's part of life ... life is not perfect for any of us ... it could

easily be you taking care of her, versus her supporting

you...marriage is about commitment, but it has to start with

trust...tell her and trust the process...you're not alone...be

kinder to your self, really...it will all work out ...everything

does, one way or the other.

barbara

- In , " bondra500 " wrote:

>

> Most of you probably saw my post last week talking about how I'm

in

> an incredibly tough spot. A relationship with a wonderful girl

that

> has turned very serious after not expecting much at the start, the

> fact that I have to reveal my PSC + UC to her and her family, and

> how she will react. I'll just come right out with it, I wasn't

able

> to come out with everything like I had hoped to while I was

visiting

> her this weekend. We were having such a great time and I couldn't

> get myself to do it, it would have turned everything sour. So

here

> I am now, feeling terrible about all this. Our relationship grew

so

> much stronger while I was there, and we are talking serious about

> stuff, but I've got all this that I have to reveal to her. We

> talked on the phone today and she mentioned how her mom is worried

> about the stomach problems I had. Up until today basically all

they

> knew was that I had major stomach problems in the fall of 2004,

but

> that I've recovered well, returned to living a normal life, and

the

> medication I'm on has stabilized things (as in the UC and PSC).

So

> today on the phone I revealed a little bit more, explaining what

it

> was caused my stomach problems to develop and that stomach and

liver

> damage had occured. I stopped short of mentioning chronic, UC, or

> PSC though. I know I have to do this, I totally know. I feel

> miserable right now. Because I love this girl and she loves me,

and

> in all honesty I could see us getting married if I didn't have UC

> and PSC. It's going to be so hard to reveal this to her because

> even though I have a positive outlook on things (although that's

> starting to slip now because of all this) when she finds out what

I

> have going on she's going to look online for information and see

all

> the 10 year stuff and freak out and then she will tell her mom and

> her mom will see everything and freak out and tell her that we

> shouldn't be together. I'm just so afraid this is going to end up

> ruining our relationship. I've waited all my life for a

> relationship like this and then it comes along and I have to deal

> with issues like this. I don't want to lose this girl and I don't

> know what to think right now. I've been so strong so far with

> everyting I've gone through and now I feel like I'm being Dx all

> over again. That's all I can think of right now, I just feel so

> down. : (

>

May 26, 2006

I understand your fear...it's okay. but, my friend- if this girl is

so wonderful, why are you assuming she will " freak " and all kinds of

negative outcomes will occur including you won't get married.

Believe in the best response, but give her room to feel whatever and

stop beating yourself up ... we all do the best we can with what we

know...she will too...trust...you're probably hurting yourself more

by holding back and waiting,,, anxiety is not good for anyone, much

less PSCers.... take a deep breath, take your time, forgive

yourself, and trust her ... and if it doesn't work out, then she's

not the one. EVERYONE has health challenges in their lifetime -

it's part of life ... life is not perfect for any of us ... it could

easily be you taking care of her, versus her supporting

you...marriage is about commitment, but it has to start with

trust...tell her and trust the process...you're not alone...be

kinder to your self, really...it will all work out ...everything

does, one way or the other.

barbara

- In , " bondra500 " wrote:

>

> Most of you probably saw my post last week talking about how I'm

in

> an incredibly tough spot. A relationship with a wonderful girl

that

> has turned very serious after not expecting much at the start, the

> fact that I have to reveal my PSC + UC to her and her family, and

> how she will react. I'll just come right out with it, I wasn't

able

> to come out with everything like I had hoped to while I was

visiting

> her this weekend. We were having such a great time and I couldn't

> get myself to do it, it would have turned everything sour. So

here

> I am now, feeling terrible about all this. Our relationship grew

so

> much stronger while I was there, and we are talking serious about

> stuff, but I've got all this that I have to reveal to her. We

> talked on the phone today and she mentioned how her mom is worried

> about the stomach problems I had. Up until today basically all

they

> knew was that I had major stomach problems in the fall of 2004,

but

> that I've recovered well, returned to living a normal life, and

the

> medication I'm on has stabilized things (as in the UC and PSC).

So

> today on the phone I revealed a little bit more, explaining what

it

> was caused my stomach problems to develop and that stomach and

liver

> damage had occured. I stopped short of mentioning chronic, UC, or

> PSC though. I know I have to do this, I totally know. I feel

> miserable right now. Because I love this girl and she loves me,

and

> in all honesty I could see us getting married if I didn't have UC

> and PSC. It's going to be so hard to reveal this to her because

> even though I have a positive outlook on things (although that's

> starting to slip now because of all this) when she finds out what

I

> have going on she's going to look online for information and see

all

> the 10 year stuff and freak out and then she will tell her mom and

> her mom will see everything and freak out and tell her that we

> shouldn't be together. I'm just so afraid this is going to end up

> ruining our relationship. I've waited all my life for a

> relationship like this and then it comes along and I have to deal

> with issues like this. I don't want to lose this girl and I don't

> know what to think right now. I've been so strong so far with

> everyting I've gone through and now I feel like I'm being Dx all

> over again. That's all I can think of right now, I just feel so

> down. : (

>

May 26, 2006

I understand your fear...it's okay. but, my friend- if this girl is

so wonderful, why are you assuming she will " freak " and all kinds of

negative outcomes will occur including you won't get married.

Believe in the best response, but give her room to feel whatever and

stop beating yourself up ... we all do the best we can with what we

know...she will too...trust...you're probably hurting yourself more

by holding back and waiting,,, anxiety is not good for anyone, much

less PSCers.... take a deep breath, take your time, forgive

yourself, and trust her ... and if it doesn't work out, then she's

not the one. EVERYONE has health challenges in their lifetime -

it's part of life ... life is not perfect for any of us ... it could

easily be you taking care of her, versus her supporting

you...marriage is about commitment, but it has to start with

trust...tell her and trust the process...you're not alone...be

kinder to your self, really...it will all work out ...everything

does, one way or the other.

barbara

- In , " bondra500 " wrote:

>

> Most of you probably saw my post last week talking about how I'm

in

> an incredibly tough spot. A relationship with a wonderful girl

that

> has turned very serious after not expecting much at the start, the

> fact that I have to reveal my PSC + UC to her and her family, and

> how she will react. I'll just come right out with it, I wasn't

able

> to come out with everything like I had hoped to while I was

visiting

> her this weekend. We were having such a great time and I couldn't

> get myself to do it, it would have turned everything sour. So

here

> I am now, feeling terrible about all this. Our relationship grew

so

> much stronger while I was there, and we are talking serious about

> stuff, but I've got all this that I have to reveal to her. We

> talked on the phone today and she mentioned how her mom is worried

> about the stomach problems I had. Up until today basically all

they

> knew was that I had major stomach problems in the fall of 2004,

but

> that I've recovered well, returned to living a normal life, and

the

> medication I'm on has stabilized things (as in the UC and PSC).

So

> today on the phone I revealed a little bit more, explaining what

it

> was caused my stomach problems to develop and that stomach and

liver

> damage had occured. I stopped short of mentioning chronic, UC, or

> PSC though. I know I have to do this, I totally know. I feel

> miserable right now. Because I love this girl and she loves me,

and

> in all honesty I could see us getting married if I didn't have UC

> and PSC. It's going to be so hard to reveal this to her because

> even though I have a positive outlook on things (although that's

> starting to slip now because of all this) when she finds out what

I

> have going on she's going to look online for information and see

all

> the 10 year stuff and freak out and then she will tell her mom and

> her mom will see everything and freak out and tell her that we

> shouldn't be together. I'm just so afraid this is going to end up

> ruining our relationship. I've waited all my life for a

> relationship like this and then it comes along and I have to deal

> with issues like this. I don't want to lose this girl and I don't

> know what to think right now. I've been so strong so far with

> everyting I've gone through and now I feel like I'm being Dx all

> over again. That's all I can think of right now, I just feel so

> down. : (

>

May 26, 2006

I totally agree with Barbara, have faith in the relationship you are

building. Even though the long term prognosis is really scary, as

you know living with it, during the early stages are not. Besides

there are bound be some major break throughs in the next 10 years.

For me and my husband it makes us enjoy each day, and not worry, too

much, about what is to come. There is nothing we can do to control

it so why try?

don't get low, it will work out.

Litsa

>

> I understand your fear...it's okay. but, my friend- if this girl

is

> so wonderful, why are you assuming she will " freak " and all kinds

of

> negative outcomes will occur including you won't get married.

> Believe in the best response, but give her room to feel whatever

and

> stop beating yourself up ... we all do the best we can with what

we

> know...she will too...trust...you're probably hurting yourself

more

> by holding back and waiting,,, anxiety is not good for anyone,

much

> less PSCers.... take a deep breath, take your time, forgive

> yourself, and trust her ... and if it doesn't work out, then she's

> not the one. EVERYONE has health challenges in their lifetime -

> it's part of life ... life is not perfect for any of us ... it

could

> easily be you taking care of her, versus her supporting

> you...marriage is about commitment, but it has to start with

> trust...tell her and trust the process...you're not alone...be

> kinder to your self, really...it will all work out ...everything

> does, one way or the other.

May 26, 2006

I totally agree with Barbara, have faith in the relationship you are

building. Even though the long term prognosis is really scary, as

you know living with it, during the early stages are not. Besides

there are bound be some major break throughs in the next 10 years.

For me and my husband it makes us enjoy each day, and not worry, too

much, about what is to come. There is nothing we can do to control

it so why try?

don't get low, it will work out.

Litsa

>

> I understand your fear...it's okay. but, my friend- if this girl

is

> so wonderful, why are you assuming she will " freak " and all kinds

of

> negative outcomes will occur including you won't get married.

> Believe in the best response, but give her room to feel whatever

and

> stop beating yourself up ... we all do the best we can with what

we

> know...she will too...trust...you're probably hurting yourself

more

> by holding back and waiting,,, anxiety is not good for anyone,

much

> less PSCers.... take a deep breath, take your time, forgive

> yourself, and trust her ... and if it doesn't work out, then she's

> not the one. EVERYONE has health challenges in their lifetime -

> it's part of life ... life is not perfect for any of us ... it

could

> easily be you taking care of her, versus her supporting

> you...marriage is about commitment, but it has to start with

> trust...tell her and trust the process...you're not alone...be

> kinder to your self, really...it will all work out ...everything

> does, one way or the other.

May 26, 2006

I totally agree with Barbara, have faith in the relationship you are

building. Even though the long term prognosis is really scary, as

you know living with it, during the early stages are not. Besides

there are bound be some major break throughs in the next 10 years.

For me and my husband it makes us enjoy each day, and not worry, too

much, about what is to come. There is nothing we can do to control

it so why try?

don't get low, it will work out.

Litsa

>

> I understand your fear...it's okay. but, my friend- if this girl

is

> so wonderful, why are you assuming she will " freak " and all kinds

of

> negative outcomes will occur including you won't get married.

> Believe in the best response, but give her room to feel whatever

and

> stop beating yourself up ... we all do the best we can with what

we

> know...she will too...trust...you're probably hurting yourself

more

> by holding back and waiting,,, anxiety is not good for anyone,

much

> less PSCers.... take a deep breath, take your time, forgive

> yourself, and trust her ... and if it doesn't work out, then she's

> not the one. EVERYONE has health challenges in their lifetime -

> it's part of life ... life is not perfect for any of us ... it

could

> easily be you taking care of her, versus her supporting

> you...marriage is about commitment, but it has to start with

> trust...tell her and trust the process...you're not alone...be

> kinder to your self, really...it will all work out ...everything

> does, one way or the other.

May 26, 2006

,

I don't have anything new to add, but it might help if you print out

the pamphlet we have available on the pscpartners.org website. It is

very positive but realistic about what a dx of PSC means. It might

help her to understand that the disease is scary, but that it doesn't

have to be as scary as some of the more negative publications make it

sound. It would also be something that she could show her

family...Just a thought. It might be something good once you've

already explained it to her.

HTH,

Deb in VA

May 26, 2006

,

I don't have anything new to add, but it might help if you print out

the pamphlet we have available on the pscpartners.org website. It is

very positive but realistic about what a dx of PSC means. It might

help her to understand that the disease is scary, but that it doesn't

have to be as scary as some of the more negative publications make it

sound. It would also be something that she could show her

family...Just a thought. It might be something good once you've

already explained it to her.

HTH,

Deb in VA

May 26, 2006

,

I don't have anything new to add, but it might help if you print out

the pamphlet we have available on the pscpartners.org website. It is

very positive but realistic about what a dx of PSC means. It might

help her to understand that the disease is scary, but that it doesn't

have to be as scary as some of the more negative publications make it

sound. It would also be something that she could show her

family...Just a thought. It might be something good once you've

already explained it to her.

HTH,

Deb in VA

May 26, 2006

when she finds out what I

> have going on she's going to look online for information and see all

> the 10 year stuff and freak out and then she will tell her mom and

> her mom will see everything and freak out and tell her that we

> shouldn't be together. I'm just so afraid this is going to end up

> ruining our relationship.

I think when you fill her in completely, you should suggest some

sources of information to her. Deb mentioned the PSC brochure- that's

a good place to start. And don't forget Klug's book either- if

that's not inspiring, what is?

People react differently- my husband hasn't worried about me getting

sick throughout our 14 year relationship. We began dating within weeks

of my diagnosis. I haven't gotten sick, yet, but we have some warning

it's coming closer. He's been a great support through it all. We've

built our lives with some safety nets, but went ahead with having a

child, education, careers, and all the other experiences and

achievements we have wanted.

Good luck to both of you. I expect your girlfriend will be able to

handle it- it's going to be harder for her mother, because she's older

and time seems to pass so quickly when one thinks back when one is a

parent.

Martha (MA)

May 26, 2006

when she finds out what I

> have going on she's going to look online for information and see all

> the 10 year stuff and freak out and then she will tell her mom and

> her mom will see everything and freak out and tell her that we

> shouldn't be together. I'm just so afraid this is going to end up

> ruining our relationship.

I think when you fill her in completely, you should suggest some

sources of information to her. Deb mentioned the PSC brochure- that's

a good place to start. And don't forget Klug's book either- if

that's not inspiring, what is?

People react differently- my husband hasn't worried about me getting

sick throughout our 14 year relationship. We began dating within weeks

of my diagnosis. I haven't gotten sick, yet, but we have some warning

it's coming closer. He's been a great support through it all. We've

built our lives with some safety nets, but went ahead with having a

child, education, careers, and all the other experiences and

achievements we have wanted.

Good luck to both of you. I expect your girlfriend will be able to

handle it- it's going to be harder for her mother, because she's older

and time seems to pass so quickly when one thinks back when one is a

parent.

Martha (MA)

May 26, 2006

when she finds out what I

> have going on she's going to look online for information and see all

> the 10 year stuff and freak out and then she will tell her mom and

> her mom will see everything and freak out and tell her that we

> shouldn't be together. I'm just so afraid this is going to end up

> ruining our relationship.

I think when you fill her in completely, you should suggest some

sources of information to her. Deb mentioned the PSC brochure- that's

a good place to start. And don't forget Klug's book either- if

that's not inspiring, what is?

People react differently- my husband hasn't worried about me getting

sick throughout our 14 year relationship. We began dating within weeks

of my diagnosis. I haven't gotten sick, yet, but we have some warning

it's coming closer. He's been a great support through it all. We've

built our lives with some safety nets, but went ahead with having a

child, education, careers, and all the other experiences and

achievements we have wanted.

Good luck to both of you. I expect your girlfriend will be able to

handle it- it's going to be harder for her mother, because she's older

and time seems to pass so quickly when one thinks back when one is a

parent.

Martha (MA)

May 27, 2006

Thanks to everyone for their kind words. This is just so

frusterating to deal with and think about. I've come to accept what

I have going on inside of me and I honestly think I've got a lot of

good years left in the tank, but it's amazing how when all of sudden

there is so much at stake all that confidence I have built up starts

to shake. I think my girlfriend is beginning to realize that there

is a little bit more going on now. Ever since she mentioned to me

her mom's concern about my health situation the other day, I have

brought up my fears of her leaving me becase of my health each time

we have been on the phone. She says this will never happen, and I

want to believe her, but just when you have something like PSC going

on, I don't know, I guess you just never expect the expected. I've

tried mentioning on the phone that I've had damage done to my

stomach and liver, but since being placed on medication I have

stabilized and returned to living a normal life, however she says

she doesn't want to talk about it right now. That's fine, but it's

something we are going to have to talk about eventually, and I am at

the point now where I am considering a return trip to South Carolina

to talk about this with her and her family. I don't want to do it

over the phone and I don't want to do it when she comes up to visit

me and then make her drive 8 hours home, all by herself, thinking

about this. My chief concern is still her and her family being

worried about my life span, and while yes, that is understandably a

big concern with PSC, I believe I've got a good deal of time left.

Is is unreasonable to think that I could go 20 years after Dx before

requiring a transplant? I just feel that I've got it in me to put

up a hell of a fight against PSC and then if the time comes, get a

transplant. I think about advances in medical technology and better

treatments and improvement in transplants before I might need one,

and I feel like I could live a fairly long life. I don't want this

girl and her family to freak out and while I hope love and true

happiness can trump my health situation, it's going to help a lot if

I can explain to my girlfriend and her family that while this is an

issue that I have to be very aware of and take care for the rest of

my life, there's no reason to think that I've still got a good shot

at living for a while. Anyone have any responses that might help me

feel better with all this? Thanks so much!

, 18, VA

PSC + UC 10/04

May 27, 2006