Re: to introduce myself

[Guest guest]

dear kathy,

the natural high point is so true! i was so excited, because i went

out with some college friends last night to a dance club (i don't think i've

ever been sober at a dance club - before this, i really liked to drink!). i

was exhilirated by the end of the night, because i had a really good time,

and their energy rubbed off on me! yay for positive energy!!!

emily

>From: KATBERCOO@...

>Reply- onelist

> onelist

>Subject: Re: [ ] to introduce myself

>Date: Sat, 8 May 1999 19:49:12 EDT

>

>From: KATBERCOO@...

>

>Dear :

>

>It can be rough not going along with what your friends and family do

>(drinking alcohol). A lot of families drink wine as a traditional part of

>meals (it was a big thing when I was a kid, being half Greek). Cranberry

>juice mixed with sparkling water is a nice alternative to wine. I found

>that

>when I was with friends or family that imbibe on a regular basis, that just

>being around them gives me a 'natural high' that is better than alcohol.

>I'm

>always the 'designated driver' too.

>

>Kathy (AIH)

>Seattle area

>

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[Guest guest]

Good for you, still keeping up with your studies and grades. You still have

a bright future ahead and I'm glad you haven't allowed this to side track you

from it. Keep it up. Keep us updated on how you are doing!

Tami

[Guest guest]

Dear :

It can be rough not going along with what your friends and family do

(drinking alcohol). A lot of families drink wine as a traditional part of

meals (it was a big thing when I was a kid, being half Greek). Cranberry

juice mixed with sparkling water is a nice alternative to wine. I found that

when I was with friends or family that imbibe on a regular basis, that just

being around them gives me a 'natural high' that is better than alcohol. I'm

always the 'designated driver' too.

Kathy (AIH)

Seattle area

[Guest guest]

<< I'm presently on zero medication except Prednisone which I

have to wean off gradually. By then I'll see the bone specialist For a new

regiment. >> Good for you! I hope it works out for you and you never have

to deal with Prednisone again. I hope that someday my doctors decide to

see if I can get along without Imuran, but the price is too high if that

doesn't happen to work out for me.

Geri

[Guest guest]

Geri,

Drinking has been a pretty normal part of life for me throughout highschool

and university. Fortunately, or unfortunately, it rarely made me very sick.

I've known many people who have chose not to drink, and that has always

been accepted by everyone (except the idiots) no problem. I'm not too

worried about social outings, because all my friends and family know, and

are very supportive. My naturopath has pretty much restricted me to water,

which is fine because, like yourself, I never really liked pop anyways!! It

angers me that bottled water costs so much at nightclubs etc. Designated

drivers should be given a break! I appreciate your insight. I've noticed

you offer very thoughtful and clear messages...have you ever been a

writer?!?!?

>From: Geri Spang <spangs@...>

>Reply- onelist

> onelist

>Subject: Re: [ ] to introduce myself

>Date: Sat, 08 May 1999 17:22:41 -0700

>

>From: Geri Spang <spangs@...>

>

>,

>Drinking is part of our culture, for better or for worse. The first time I

>ever drank was when I was 16 (not counting the little taste that relatives

>like to give children, though my Mom frowned on that) and I learned almost

>immediately that the stuff made me sick. Regardless, through my teens and

>twenties I valiantly struggled on, drinking with friends at parties and

>nightclubs and with dinner, though never very much. I could usually handle

>two drinks and on drink number three my stomach would start to churn and

>I'd have to quit. Always, there were horrible headaches. It makes me

>wonder if there was something going on even w-a-y back then.

>

>I've been the designated driver for more than 20 years now. I do enjoy

>good wine but it's a pleasure that I've had to forego. I basically gave up

>even an occasional drink (not a rigid rule, though) when I realized that I

>was not going to be able to avoid getting sick. I even asked my doctor why

>I couldn't drink and he said, " just lucky, I guess. " Ha!

>

>Now I don't really think much about it except when we're waiting for a

>table in a restaurant and seated in the bar. I hate to spoil a meal by

>drinking Coke and I don't like most soft drinks anyhow, but try to order a

>non-alcoholic drink sometime. They act like a Martian just dropped in. In

>Europe you can order fresh lemonade, made from real lemons but few bars

>serve it here. I can't stand that cloying bottled lemonade, so I end up

>drinking water or sipping a Coke.

>

>I can enjoy myself in a drinking situation as much as everyone else but the

>big difference is that the next day I don't have to wonder if I made a fool

>of myself (I usually know that the same night, unlike a drinker). People

>are growing more enlightened and accepting about non-drinkers than they

>once were. It isn't automatically assumed that you're some kind of an

>evangelist anymore. I have a 21 year old grandson who absolutely won't

>drink, ever. I don't know what traumatized him, but he won't touch the

>stuff. He doesn't preach to others and all of his friends drink, but he

>has decided it's not for him, and I admire him for that. He still gets

>traffic tickets but at least they're never DUIs!

>

>Incidentally, my family is Irish Catholic and you've probably heard a few

>jokes about family drinking traditions of the Irish. Most of them are

>true, but in my family, the men do the drinking and the women pick up the

>pieces.

>

>Ironic, isn't it, that I'm the only one in my family with liver disease?

>

>Take care,

>Geri

>

>

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[Guest guest]

Patti,

I have AIH, not PBC, though that was my original diagnosis. I looked it up

on Internet and went into a deep, blue funk. I couldn't believe this was

happening to me. A frightening diagnosis like that is very difficult to

come to terms with, but at least in my experience, in time the shock fades

and you begin to concentrate on the best way to learn to live with what you

have. Now, except for when I'm online, I seldom think about AIH and I've

actually gotten used to not being my " old " self.

There are people here who have PBC and who know a lot about it. They are

tremendously supportive and most are quite knowledgeable. You've come to

the right place!

Take care,

Geri

[Guest guest]

,

Some people can't stop taking Prednisone once they've taken it for awhile.

I might be one of them but I'll try one more time. The last time was a

disaster and until I started back on Prednisone, I didn't realize how much

better it was making me feel.

I know what you mean about getting sick of taking pills. What a shock it

was to me, to go from taking nothing but an occasional aspirin to taking so

many I have to keep a checklist to make sure I don't miss anything.

On the plus side, you're doing well in school, you're creative, and you're

stable right now. It's got to be tough to have a chronic disease at your

age. All of your plans for the future have to be re-evaluated, but it only

adds up to a change in course. One way of looking at things is that you

know a lot more about the value of life and good health than most people

your age. Time is on your side. They're learning more every day about how

to deal with these diseases so the future could very well offer you a

normal life.

Take care and hang in there.

Geri

[Guest guest]

,

There have been a few young women close to your age who have posted here.

Offhand, I think of Saundra in Sweden and in Brazil. One way of

looking at it is that we're not exactly " ordinary " . Because it's not

always easy to diagnose, it could be that as doctors learn more about the

disease, many more previously undiagnosed patients will emerge. Not that

we wish that on anyone, but it's better to know and to get treatment than

to silently grow more and more ill. One thing to look forward to is that

many people go into remission and remissions can last for many, many years.

Let's hope that you're right around the corner from a remission now.

Meantime, someone else suggested that you might write down your thoughts

and keep a journal. Your experiences could be extremely helpful for other

young people and talking about how you feel, even just when writing for

your own sake, could be good for you. Someday you might even surprise

yourself when you look back on all this.

Take care,

Geri

[Guest guest]

Hi Patti:

Welcome to the group. Anything you need to know the group will tell you or

they will find out for you.

Sue AIH

Wisconsin

[Guest guest]

Hi Rose,

I'm originally from NYC, so I can seem offensive to those with a more delicate

nature. It sounds like what you're saying is that the doctor took you off the

prednisone - end of conversation. If I was in your position - I would ask the

doctor for a referral to one of the medical centers which specialize in liver

transplants. I only suggest that, because the medical centers have specialists

who only deal with liver problems. They've seen it all, I'm sure that they will

be able to evalute your condition and recommend an appropriate treatment.

Sometimes, we have to just jump in and take responsibility for our own health.

It's really difficult when we don't feel well and we get so used to listening to

the people (doctors) we entrust our care to. There are doctors out there who

can help you but, you'll have to take the initiative. Don't be afraid, many of

us have had to do the same thing.

Don't give up and don't let anyone get you down, :-)

Barbara Ann

--

On Sat, 8 May 1999 00:33:47 XxChastexX wrote:

>From: XxChastexX@...

>

>Taking the meds is the easy part Hun Hoping they work is the tough part. I

>have been on Prednisone 7 months & now have been taken off as my counts are

>unchanged & my bone density is extremely low. Walking is an effort & I have

>had to cut back on my work schedule. So now I guess I get to watch this

>disease progress through me....Sorry to sound Bitchy but I just got this bit

>of news Via my Voice mail today. Doctors can be so callous.

>

>Rose

>XXChasteXX

>

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[Guest guest]

,

Drinking is part of our culture, for better or for worse. The first time I

ever drank was when I was 16 (not counting the little taste that relatives

like to give children, though my Mom frowned on that) and I learned almost

immediately that the stuff made me sick. Regardless, through my teens and

twenties I valiantly struggled on, drinking with friends at parties and

nightclubs and with dinner, though never very much. I could usually handle

two drinks and on drink number three my stomach would start to churn and

I'd have to quit. Always, there were horrible headaches. It makes me

wonder if there was something going on even w-a-y back then.

I've been the designated driver for more than 20 years now. I do enjoy

good wine but it's a pleasure that I've had to forego. I basically gave up

even an occasional drink (not a rigid rule, though) when I realized that I

was not going to be able to avoid getting sick. I even asked my doctor why

I couldn't drink and he said, " just lucky, I guess. " Ha!

Now I don't really think much about it except when we're waiting for a

table in a restaurant and seated in the bar. I hate to spoil a meal by

drinking Coke and I don't like most soft drinks anyhow, but try to order a

non-alcoholic drink sometime. They act like a Martian just dropped in. In

Europe you can order fresh lemonade, made from real lemons but few bars

serve it here. I can't stand that cloying bottled lemonade, so I end up

drinking water or sipping a Coke.

I can enjoy myself in a drinking situation as much as everyone else but the

big difference is that the next day I don't have to wonder if I made a fool

of myself (I usually know that the same night, unlike a drinker). People

are growing more enlightened and accepting about non-drinkers than they

once were. It isn't automatically assumed that you're some kind of an

evangelist anymore. I have a 21 year old grandson who absolutely won't

drink, ever. I don't know what traumatized him, but he won't touch the

stuff. He doesn't preach to others and all of his friends drink, but he

has decided it's not for him, and I admire him for that. He still gets

traffic tickets but at least they're never DUIs!

Incidentally, my family is Irish Catholic and you've probably heard a few

jokes about family drinking traditions of the Irish. Most of them are

true, but in my family, the men do the drinking and the women pick up the

pieces.

Ironic, isn't it, that I'm the only one in my family with liver disease?

Take care,

Geri

[Guest guest]

:

I too had no one in my town that I knew had AIH. One lady a church told me

her sister-in-law had it and when I called her she seemed like she didn't

want to discuss it with me.

I also was the first AIH patient my local doctor had and boy he sure has read

alot about AIH. He said he will keep reading until there is a cure.

Sue AIH

Wisconsin

[Guest guest]

Barb

Thanks for the advice...I think they want to rule out a septic hip joint

which Prednisone hinders

[Guest guest]

When I was diagonosed I was so sick... they had to act fast. I had

cirrohsis on my liver and i was practically starving to death. I had to

take large amounts of Prednisone for a quite a while...

Some kids at school picked on me cause of the stuff prednisone did to me. I

sacrificed my size 10 figure for a size 22. I sacrificed my sleep at night

and even some people who I thought were my friends left. The things I

gained were a closer family and a greater understanding of who I am and

what I wanted to do with my life, and a very strong faith. I have developed

life long friendships. It is a very hard road to travel but it is a part of

life and life does go on.

The thing I found the hardest at times was not dealing with my disease but

having to deal with everyday problems as well.

I fought for what I believed should have been done at school. One teacher

even wanted me to drop out. 'I'll show them' I thought and i did. I am

about to graduate and go off to college.

About the drinking, I used to binge drink on the weekendes and got into a

lot of trouble. I was actually relieved when the doctor told me to stop

drinking. I am a completely different person than what I used to be and I

feel as though I have changed for the better.

I hope everything goes well for you.

My prayers are with you

>From: " emily simpson " <esimpson7@...>

>Reply- onelist

> onelist

>Subject: Re: [ ] to introduce myself

>Date: Sat, 08 May 1999 16:33:53 PDT

>

>From: " emily simpson " <esimpson7@...>

>

>dear leslie,

>

> i just wanted to let you know that i'm around your age too. my name's

>emily, and i'm 23. i live in Canada, and have just been diagnosed. i

>don't know how long i've had this. maybe the biopsy will clarify this for

>me? anyways, i feel equipped to handle this now. it must have been tough

>for you through your school years. sounds like you've stood your ground,

>and fought for your rights, which is amazing. what do you find have been

>your greatest challenges? this is such a minute thing in light of all

>other factors, but one thing i'm finding is a huge change is not being able

>to drink alcohol. before this, i've always drank along with my friends.

>my boyfriend's father is also a wine connoisseur, so it's a social normalcy

>at their house to share wine together (they're also czechoslovakian -

>tradition?). anyways, i know this probably one of the smaller adjustments,

>but it's a loss just the same (especially now that it's summer)...i hope

>this doesn't offend anyone..

>take care,

>

>emily

>

>>From: Geri Spang <spangs@...>

>>Reply- onelist

>> onelist

>>Subject: Re: [ ] to introduce myself

>>Date: Sat, 08 May 1999 14:48:01 -0700

>>

>>From: Geri Spang <spangs@...>

>>

>>,

>>There have been a few young women close to your age who have posted here.

>>Offhand, I think of Saundra in Sweden and in Brazil. One way of

>>looking at it is that we're not exactly " ordinary " . Because it's not

>>always easy to diagnose, it could be that as doctors learn more about the

>>disease, many more previously undiagnosed patients will emerge. Not that

>>we wish that on anyone, but it's better to know and to get treatment than

>>to silently grow more and more ill. One thing to look forward to is that

>>many people go into remission and remissions can last for many, many

>>years.

>> Let's hope that you're right around the corner from a remission now.

>>

>>Meantime, someone else suggested that you might write down your thoughts

>>and keep a journal. Your experiences could be extremely helpful for other

>>young people and talking about how you feel, even just when writing for

>>your own sake, could be good for you. Someday you might even surprise

>>yourself when you look back on all this.

>>Take care,

>>Geri

>>

>>------------------------------------------------------------------------

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>>

>>Now you can with our new User Survey Tool - see homepage for details

>>------------------------------------------------------------------------

>>Please support the American Liver Foundation!

>>

>>

>>

>>1.) To subscribe send e-mail to -subscribeonelist

>>

>>2.) To UNsubscribe send to -unsubscribeonelist

>>

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>>

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>

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[Guest guest]

My state only has a couple liver specialist here. I was lucky to find one

close to my town. he said there has never been a women in the state with

this desiease. he brought up my case at conventions and meetings. I really

like him. I can tell that he really cares about what is going on. I am

doing so much better know.

>From: Roselle50@...

>Reply- onelist

> onelist

>Subject: Re: [ ] to introduce myself

>Date: Sun, 9 May 1999 00:33:52 EDT

>

>From: Roselle50@...

>

>:

>

>I too had no one in my town that I knew had AIH. One lady a church told me

>her sister-in-law had it and when I called her she seemed like she didn't

>want to discuss it with me.

>

>I also was the first AIH patient my local doctor had and boy he sure has

>read

>alot about AIH. He said he will keep reading until there is a cure.

>

>Sue AIH

>Wisconsin

>

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[Guest guest]

:

About drinking---I work at a liquor/wine wholesaler and everytime we get a

new product in we get it taste it. I was alway in line for the tasting and

now it something I don't want to be around because really enjoyed tasting new

wines and liquor. I was a social drinker when I was young but before I got

sick a beer or two a year was all I drank. I really like the taste of a beer

and I miss not being able to have one.

Sue AIH

Wisconsin

[Guest guest]

I was diagnosed at the age of 14. it seemed like the end of the world to

me. I am so glad that things are going good for me now.

>From: MRios81143@...

>Reply- onelist

> onelist

>Subject: Re: [ ] To introduce myself

>Date: Sun, 9 May 1999 01:34:45 EDT

>

>From: MRios81143@...

>

>hello ,

>Welcome, Like you at around19 i had all the signs of hep, but the test

>always came back negative, Well of course now it's positive. Once again

>welcome.

>

>NYC

>

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[Guest guest]

That is very true... I love to write so I find it relaxing. But I have my

days when i just don't want to write.

leslie

>From: Geri Spang <spangs@...>

>Reply- onelist

> onelist

>Subject: Re: [ ] to introduce myself

>Date: Sat, 08 May 1999 22:35:32 -0700

>

>From: Geri Spang <spangs@...>

>

>,

>Diaries and journals don't work for anyone. I tried to keep a journal once

>and found that it bored me to read what I'd written. I'd think, " that's

>old news. " And of course, I already knew how things worked out by the time

>I read it.

>Geri

>

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[Guest guest]

hello ,

Welcome, Like you at around19 i had all the signs of hep, but the test

always came back negative, Well of course now it's positive. Once again

welcome.

NYC

[Guest guest]

,

Diaries and journals don't work for anyone. I tried to keep a journal once

and found that it bored me to read what I'd written. I'd think, " that's

old news. " And of course, I already knew how things worked out by the time

I read it.

Geri

[Guest guest]

Hi , welcome. Having AIH means coping with a lot of uncertainty. It

can be done and this is a good forum for support to do it, so feel free to

chime in.

Roxanne

[Guest guest]

Sue,

Thanks for relating to me about the alcohol thing. That would be especially

tough for you working in a liquor/wine wholesaler! Too bad something so fun

and so pleasurable can be so damaging to our poor little livers. First our

immune system, then alcohol, plus the strain of certain foods we eat...our

poor livers must be so confused!!!

>From: Roselle50@...

>Reply- onelist

> onelist

>Subject: Re: [ ] to introduce myself

>Date: Sun, 9 May 1999 01:07:42 EDT

>

>From: Roselle50@...

>

>

>:

>

>About drinking---I work at a liquor/wine wholesaler and everytime we get a

>new product in we get it taste it. I was alway in line for the tasting and

>now it something I don't want to be around because really enjoyed tasting

>new

>wines and liquor. I was a social drinker when I was young but before I got

>sick a beer or two a year was all I drank. I really like the taste of a

>beer

>and I miss not being able to have one.

>

>Sue AIH

>Wisconsin

>

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[Guest guest]

Dear ,

Thanks for your heartfelt thoughts...I feel that I've changed a lot

throughout this so far as well. I've really been looking at my life

philosophies quite a bit. Appreciating the importance of family, and

discovering which friends are truly friends. I find that now that it's so

important for me to control my stress, I just do it. It's interesting to me

the strength you have when you really need it. I'm getting to know myself a

lot better, as well as liking myself better too. Before this, I would have

anticipated breaking down at news such as this! I have to say that I do

have it easy though. My family and boyfriend share the burden, and research

along with me. It's kind of strange to be diagnosed with the disease, and

feel lucky at the same time. I don't know if the reality has set in yet,

to tell you the truth. Probably when I start taking the meds. Anyways, I'm

glad you're here on this site...

Take Care,

>From: " " <teers@...>

>Reply- onelist

> onelist

>Subject: Re: [ ] to introduce myself

>Date: Sun, 09 May 1999 00:49:20 MDT

>

>From: " " <teers@...>

>

>When I was diagonosed I was so sick... they had to act fast. I had

>cirrohsis on my liver and i was practically starving to death. I had to

>take large amounts of Prednisone for a quite a while...

>Some kids at school picked on me cause of the stuff prednisone did to me.

>I sacrificed my size 10 figure for a size 22. I sacrificed my sleep at

>night and even some people who I thought were my friends left. The things

>I gained were a closer family and a greater understanding of who I am and

>what I wanted to do with my life, and a very strong faith. I have

>developed life long friendships. It is a very hard road to travel but it is

>a part of life and life does go on.

>The thing I found the hardest at times was not dealing with my disease but

>having to deal with everyday problems as well.

>I fought for what I believed should have been done at school. One teacher

>even wanted me to drop out. 'I'll show them' I thought and i did. I am

>about to graduate and go off to college.

>About the drinking, I used to binge drink on the weekendes and got into a

>lot of trouble. I was actually relieved when the doctor told me to stop

>drinking. I am a completely different person than what I used to be and I

>feel as though I have changed for the better.

>I hope everything goes well for you.

>My prayers are with you

>

>

>

>>From: " emily simpson " <esimpson7@...>

>>Reply- onelist

>> onelist

>>Subject: Re: [ ] to introduce myself

>>Date: Sat, 08 May 1999 16:33:53 PDT

>>

>>From: " emily simpson " <esimpson7@...>

>>

>>dear leslie,

>>

>> i just wanted to let you know that i'm around your age too. my

>>name's emily, and i'm 23. i live in Canada, and have just been diagnosed.

>> i don't know how long i've had this. maybe the biopsy will clarify this

>>for me? anyways, i feel equipped to handle this now. it must have been

>>tough for you through your school years. sounds like you've stood your

>>ground, and fought for your rights, which is amazing. what do you find

>>have been your greatest challenges? this is such a minute thing in light

>>of all other factors, but one thing i'm finding is a huge change is not

>>being able to drink alcohol. before this, i've always drank along with my

>>friends. my boyfriend's father is also a wine connoisseur, so it's a

>>social normalcy at their house to share wine together (they're also

>>czechoslovakian - tradition?). anyways, i know this probably one of the

>>smaller adjustments, but it's a loss just the same (especially now that

>>it's summer)...i hope this doesn't offend anyone..

>>take care,

>>

>>emily

>>

>>>From: Geri Spang <spangs@...>

>>>Reply- onelist

>>> onelist

>>>Subject: Re: [ ] to introduce myself

>>>Date: Sat, 08 May 1999 14:48:01 -0700

>>>

>>>From: Geri Spang <spangs@...>

>>>

>>>,

>>>There have been a few young women close to your age who have posted here.

>>>Offhand, I think of Saundra in Sweden and in Brazil. One way of

>>>looking at it is that we're not exactly " ordinary " . Because it's not

>>>always easy to diagnose, it could be that as doctors learn more about the

>>>disease, many more previously undiagnosed patients will emerge. Not that

>>>we wish that on anyone, but it's better to know and to get treatment than

>>>to silently grow more and more ill. One thing to look forward to is that

>>>many people go into remission and remissions can last for many, many

>>>years.

>>> Let's hope that you're right around the corner from a remission now.

>>>

>>>Meantime, someone else suggested that you might write down your thoughts

>>>and keep a journal. Your experiences could be extremely helpful for

>>>other

>>>young people and talking about how you feel, even just when writing for

>>>your own sake, could be good for you. Someday you might even surprise

>>>yourself when you look back on all this.

>>>Take care,

>>>Geri

>>>

>>>------------------------------------------------------------------------

>>>Want to learn more about your list users?

>>>

>>>Now you can with our new User Survey Tool - see homepage for details

>>>------------------------------------------------------------------------

>>>Please support the American Liver Foundation!

>>>

>>>

>>>

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>>>

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>>>

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>>>

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>>>

>>

>>

>>------------------------------------------------------------------------

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>>

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>>

>>

>>

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>>

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>

>

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[Guest guest]

I felt like I too was the only person with this disease. When you tell

other people what you have they look at you like you are crazy. I thank

God everyday for all of you and the support you give me.

Pa.

[Guest guest]

,

There a lot of changes I went through. I had breakdowns and I did some

stupid things to try to end this, but I had to wake up and see that I am the

only one who is really in controll of my life. Seeing what my family went

through drove me nuts. I wanted to tell them that I was okay but I couldn't

tell myself that.

Now I am doing so much better. Looking back I find a lot of respect for my

family and myself.

I didn't really think about all that was going on until my mom said that the

doc told her that I might only have ten years, or less. I was so bad off.

My liver test were so high and I was scared half to death. My liver test

were so high for so long that I have cirohsis. But my liver is functioning

and and I am happy.

If you need to talk about anything just let me know. I am more than willing

to talk.

>From: " emily simpson " <esimpson7@...>

>Reply- onelist

> onelist

>Subject: Re: [ ] to introduce myself

>Date: Sun, 09 May 1999 14:01:16 PDT

>

>From: " emily simpson " <esimpson7@...>

>

>Dear ,

>

>Thanks for your heartfelt thoughts...I feel that I've changed a lot

>throughout this so far as well. I've really been looking at my life

>philosophies quite a bit. Appreciating the importance of family, and

>discovering which friends are truly friends. I find that now that it's so

>important for me to control my stress, I just do it. It's interesting to

>me the strength you have when you really need it. I'm getting to know

>myself a lot better, as well as liking myself better too. Before this, I

>would have anticipated breaking down at news such as this! I have to say

>that I do have it easy though. My family and boyfriend share the burden,

>and research along with me. It's kind of strange to be diagnosed with the

>disease, and feel lucky at the same time. I don't know if the reality has

>set in yet, to tell you the truth. Probably when I start taking the meds.

>Anyways, I'm glad you're here on this site...

>Take Care,

>

>

>

>>From: " " <teers@...>

>>Reply- onelist

>> onelist

>>Subject: Re: [ ] to introduce myself

>>Date: Sun, 09 May 1999 00:49:20 MDT

>>

>>From: " " <teers@...>

>>

>>When I was diagonosed I was so sick... they had to act fast. I had

>>cirrohsis on my liver and i was practically starving to death. I had to

>>take large amounts of Prednisone for a quite a while...

>>Some kids at school picked on me cause of the stuff prednisone did to me.

>>I sacrificed my size 10 figure for a size 22. I sacrificed my sleep at

>>night and even some people who I thought were my friends left. The things

>>I gained were a closer family and a greater understanding of who I am and

>>what I wanted to do with my life, and a very strong faith. I have

>>developed life long friendships. It is a very hard road to travel but it

>>is a part of life and life does go on.

>>The thing I found the hardest at times was not dealing with my disease but

>>having to deal with everyday problems as well.

>>I fought for what I believed should have been done at school. One teacher

>>even wanted me to drop out. 'I'll show them' I thought and i did. I am

>>about to graduate and go off to college.

>>About the drinking, I used to binge drink on the weekendes and got into a

>>lot of trouble. I was actually relieved when the doctor told me to stop

>>drinking. I am a completely different person than what I used to be and I

>>feel as though I have changed for the better.

>>I hope everything goes well for you.

>>My prayers are with you

>>

>>

>>

>>>From: " emily simpson " <esimpson7@...>

>>>Reply- onelist

>>> onelist

>>>Subject: Re: [ ] to introduce myself

>>>Date: Sat, 08 May 1999 16:33:53 PDT

>>>

>>>From: " emily simpson " <esimpson7@...>

>>>

>>>dear leslie,

>>>

>>> i just wanted to let you know that i'm around your age too. my

>>>name's emily, and i'm 23. i live in Canada, and have just been

>>>diagnosed. i don't know how long i've had this. maybe the biopsy will

>>>clarify this for me? anyways, i feel equipped to handle this now. it

>>>must have been tough for you through your school years. sounds like

>>>you've stood your ground, and fought for your rights, which is amazing.

>>>what do you find have been your greatest challenges? this is such a

>>>minute thing in light of all other factors, but one thing i'm finding is

>>>a huge change is not being able to drink alcohol. before this, i've

>>>always drank along with my friends. my boyfriend's father is also a wine

>>>connoisseur, so it's a social normalcy at their house to share wine

>>>together (they're also czechoslovakian - tradition?). anyways, i know

>>>this probably one of the smaller adjustments, but it's a loss just the

>>>same (especially now that it's summer)...i hope this doesn't offend

>>>anyone..

>>>take care,

>>>

>>>emily

>>>

>>>>From: Geri Spang <spangs@...>

>>>>Reply- onelist

>>>> onelist

>>>>Subject: Re: [ ] to introduce myself

>>>>Date: Sat, 08 May 1999 14:48:01 -0700

>>>>

>>>>From: Geri Spang <spangs@...>

>>>>

>>>>,

>>>>There have been a few young women close to your age who have posted

>>>>here.

>>>>Offhand, I think of Saundra in Sweden and in Brazil. One way of

>>>>looking at it is that we're not exactly " ordinary " . Because it's not

>>>>always easy to diagnose, it could be that as doctors learn more about

>>>>the

>>>>disease, many more previously undiagnosed patients will emerge. Not

>>>>that

>>>>we wish that on anyone, but it's better to know and to get treatment

>>>>than

>>>>to silently grow more and more ill. One thing to look forward to is

>>>>that

>>>>many people go into remission and remissions can last for many, many

>>>>years.

>>>> Let's hope that you're right around the corner from a remission now.

>>>>

>>>>Meantime, someone else suggested that you might write down your thoughts

>>>>and keep a journal. Your experiences could be extremely helpful for

>>>>other

>>>>young people and talking about how you feel, even just when writing for

>>>>your own sake, could be good for you. Someday you might even surprise

>>>>yourself when you look back on all this.

>>>>Take care,

>>>>Geri

>>>>

>>>>------------------------------------------------------------------------

>>>>Want to learn more about your list users?

>>>>

>>>>Now you can with our new User Survey Tool - see homepage for details

>>>>------------------------------------------------------------------------

>>>>Please support the American Liver Foundation!

>>>>

>>>>

>>>>

>>>>1.) To subscribe send e-mail to -subscribeonelist

>>>>

>>>>2.) To UNsubscribe send to -unsubscribeonelist

>>>>

>>>>3.) Digest e-mail format send to -digestonelist

>>>>

>>>>4.) Normal e-mail format send to -normalonelist

>>>>

>>>

>>>

>>>------------------------------------------------------------------------

>>>ONElist: the best source for group communications.

>>>

>>>Join today!

>>>------------------------------------------------------------------------

>>>Please support the American Liver Foundation!

>>>

>>>

>>>

>>>1.) To subscribe send e-mail to -subscribeonelist

>>>

>>>2.) To UNsubscribe send to -unsubscribeonelist

>>>

>>>3.) Digest e-mail format send to -digestonelist

>>>

>>>4.) Normal e-mail format send to -normalonelist

>>

>>

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>>

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>>

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