new member

[Guest guest]

There are many web sites for more information, I don't have them in my head but perhaps someone will post and you can get more information. I am 69, was diagnosed about 2 years ago, however had many symptoms before, just couldn't get a diagnosis. Has she had all the blood tests for high Alk Phos, and biliruben. My liver specialist in St. Louis, Mo. does not see a liver transplant in the near future, I am being treated for this and have found with this support group many have lived several years with PSC. I am sure you will get lots of support from this group, it is a great group and most of us have been there and done that. The itching goes with this disease and is hard to control. I finally found a medicine which has helped, the liver specialist prescribed Rifampin and it has helped. Just keep asking questions and I am sure someone will answer them.

Martha from Mo.

[Guest guest]

,

Welcome to the group, and thanks for

sharing the details of what brought you here. You have sensed the spirit of frank

and open communication that makes this group special. I’m not such a

veteran here either, but I have had an extended history with PSC and

transplantation, that made med familiar with the issues being discussed, and

the group has been as welcoming to me as I’m sure they will to you, that I feel like an old hand already.

If your medication and other treatment is

keeping your disease in check, so much the better – the longer you can go

without requiring a transplant, the better off you’ll be. As you are

probably aware, transplantation is not a cure for ESLD, but rather a treatment

of last resort, substituting a number of conditions with a high probability of

being controlled for a disease for which there is no effective control.

Again, welcome to the group, and let me

encourage you to ask questions if someone says something you don’t

understand.

Best wishes,

Steve

Steve

Rahn

L Tx

9/85; Waiting for Re-Tx

" Face

the Worst, Expect the Best,

Do

the Most, Forget the Rest "

New member

I just joined your group. I

feeling like I am walking into the middle of some old intimate relationships.

But, I also see you folks are very kind to all, including newcomers.

Here's my story:

I am a 52 year old woman from Sacramento. One day in January 2000, I started

having daily diarrhea. My doctor said I had irritable bowel

syndrome. After two years, a loss of 20 pounds and most of my appetite, I

insisted on more tests. Everything including a sigmoidoscopy was

negative except an elevated alk phos level. Ultrasound showed a dialated

bile duct. An ERCP showed stricture in the common bile

duct. I got a stent. Brushing ruled out cancer. 10 days

later, in the doctor's office I developed severe chills and shakes and then

high fever. I had an infection in my bile duct from the

ERCP. The infection had spread to my blood. I had an emergency

ERCP to remove the stent and spent 3 days on IV Cipro and Flagyl. A

colonoscopy in the hospital confirmed ulcers and polyps. Based on the UC

and the stricture, and high alk phos, I got the PSC diagnosis.

Two months later on a trip to Philadelphia, the shakes and chills again sent

me to the ER. This time and MRCP (MRI) showed strictures in all the major

braches of the biliary tree and the small branches on the right side of my

liver. Thankfully, the left side of the tree was pretty clean. The Philadelphia doctor suggested I get on a

list. I prepared myself for repeated infections and hospital

stays. But, somehow my health has stabilized.

My last hospital stay was in August

2001. My liver enzymes are fine as is my blood. I travel with Cipro

in my bag just in case but have not needed it. I am tired but still work

full time. I retire in 18 months. I take 1500 milligrams

of Ursodial daily and my hepatologist thinks that the Ursodiol may be helping

me stay healthy. He says there is no reason to think about transplant for

the forseeable future. I gained back all the weight loss, which is a bit

disappointing but makes the doctor happy. Also, my UC is controlled by 6

Asacol pills daily. I have faith that my liver is ticking along

somehow despite the strictures. A positive attitude and Ursodiol is

all I have to work with. My heart and prayers go out to all of

you who are in pain or itching and fighting for life. I have to admit I

am very scared of the day that I will be facing the same challenge. I am

just hoping for a few years of reasonable health after I

retire. Thank you listening.

Your

use of Yahoo! Groups is subject to the Yahoo! Terms of Service.

[Guest guest]

Welcome , I'm sorry you have psc, glad you found this

wonderfully helpful group. We have our share of differences of opinion

and hurt feelings, but on the whole we maintain a fairly civil discourse.

With your UC and cholangitis attacks (fever & chills) under control

you must be feeling pretty good for the first time in a few years. I

would agree with your doctor, you shouldn't need a transplant any time

soon. Based on the symptoms & tests you describe, I estimate 5 to 8

years of relatively stable health befor a 3 to 5 year decline puts you

in need of a transplant.

I had a transplant when I was 51 in 1998 after a long history of

elevated liver enzymes (LFTs) starting in 1980. An ERCP in 1989 lead

to a diagnosis of PSC and low level urodiol treatment. I am one of the

15 to 30% of transplantees who have PSC recur in their new liver. I

recently had a tube placed through my liver to assist in drainage.

Although it hasn't been in for long, so far it is working well and I

haven't had and cholangitis attacks since it was placed.

Good luck to you and as Steve said, ask questions if you have them.

Someone will probably be able to provide some enlightenment.

Tim R

--- In , " Soloway " <jsoloway@m...>

> I just joined your group. I feeling like I am walking into the

middle of some old intimate relationships. But, I also see you folks

are very kind to all, including newcomers. Here's my story:

>

> I am a 52 year old woman from Sacramento. One day in January 2000, I

started having daily diarrhea. My doctor said I had irritable bowel

syndrome. After two years, a loss of 20 pounds and most of my

appetite, I insisted on more tests. Everything including a

sigmoidoscopy was negative except an elevated alk phos level.

Ultrasound showed a dialated bile duct. An ERCP showed stricture in

the common bile duct. I got a stent. Brushing ruled out cancer.

10 days later, in the doctor's office I developed severe chills and

shakes and then high fever. I had an infection in my bile duct from

the ERCP. The infection had spread to my blood. I had an emergency

ERCP to remove the stent and spent 3 days on IV Cipro and Flagyl. A

colonoscopy in the hospital confirmed ulcers and polyps. Based on the

UC and the stricture, and high alk phos, I got the PSC diagnosis.

>

> Two months later on a trip to Philadelphia, the shakes and chills

again sent me to the ER. This time and MRCP (MRI) showed strictures in

all the major braches of the biliary tree and the small branches on

the right side of my liver. Thankfully, the left side of the tree was

pretty clean. The Philadelphia doctor suggested I get on a list. I

prepared myself for repeated infections and hospital stays. But,

somehow my health has stabilized.

>

> My last hospital stay was in August 2001. My liver enzymes are fine

as is my blood. I travel with Cipro in my bag just in case but have

not needed it. I am tired but still work full time. I retire in 18

months. I take 1500 milligrams of Ursodial daily and my hepatologist

thinks that the Ursodiol may be helping me stay healthy. He says

there is no reason to think about transplant for the forseeable

future. I gained back all the weight loss, which is a bit

disappointing but makes the doctor happy. Also, my UC is controlled

by 6 Asacol pills daily. I have faith that my liver is ticking along

somehow despite the strictures. A positive attitude and Ursodiol is

all I have to work with. My heart and prayers go out to all of you who

are in pain or itching and fighting for life. I have to admit I am

very scared of the day that I will be facing the same challenge. I am

just hoping for a few years of reasonable health after I retire.

Thank you listening.

[Guest guest]

Hi..My name is Dolly and I am a new member to this group. I was diagnosed with PSC about 7 years ago. I am a 40 year old married woman with 2 girls. I think I have been doing reasonably well over the past few years. I was probably the lucky few who got diagnosed at the onset of the disease. I joined this group becuase I guess the reality of my disease has just hit me after all these years! And now, after all this time, I am getting depressed over having this condition. I just want to know what other people are going thru in the hopes that I know what to expect in the coming years....and also what you are doing to help manage your condition. I have pain on my right side all the time....has anyone found anything that helps them with that? I take Actigall, Asacol (for Crohn's) and Aciphex and Levibid. I don't think the pain is due to any of the medicines but I have to wonder. Anyway, please contact me, I would really like to know about your experiences. thanks,

Dolly

[Guest guest]

Dear Leigh, I am so very very sorry to hear how awful things are going for you.

There *is*

help for you--not only on this board, but all over the place. It so happens

that there are

groups of people on this earth who have dedicated years and effort of study to

help

people who are in just your position. Think of them spiritually if it

helps--angels; saints;

agents of good karma; paths to amithaba.

May I suggest to first be as kind and gentle to yourself as you can--I know you

will have

been taught not to recognize your needs--but you need now to rest and get safe.

I would

like to suggest some books for you to start: Understanding the Borderline

Mother; Trauma

and Recovery; Stop Walking on Eggshels; Why Does he do That? (Lundy Bancroft);

most of

the 'Verbal Abuse' books by ; and some of the 'narcissism' sites

by the

eccentric but very informational San Vaknin. May I suggest a therapist, if you

don't have

one yet. And also doing whatever you need right now--whether it be sleep,

tv/movies,

escape books--whatever comforts you and makes you feel most safe. This is an

emergency situation. It is not your fault. You have an acute wound, inflicted

by others,

that is insisting you tend to it, NOW. There is treatment. It does work.

There is hope.

There are hundreds of people on this board who wish you well.

Good luck, and please post as often as you need.

Charlotte

>

> i am a new member to this site. i have been searching for answers for my life

of sheer

hell and mental confusion. i am in my middle 30s and totally lost and very

depressed. i

dont know where to turn. now that my daughter is older (teenager) and my sister

is now

experiencing what i did, my disfunctional life seems to be flashing in big

bright lights in

front of my eyes. i have lived with constant chaos going from one " event " to

another

" event " for the last 20 years. I lived till i was 16 thinking my dad and his

family were

horrible people. then till the last 2 years I was the horrible person. now its

my sister. my

aunt. everyone in my life has been isolated and i am left with nothing. i have

been

devasted by this. i am a professional who lives a life that is so fake on the

outside. people

have no idea the pain i feel behind the smile is so intense that here lately i

cant even think

clearly. I have found myself in the grocery store lately wandering about

> because i couldnt even think clearly about what i needed even though i had a

list. I am

in a marriage that is emotionless because when we met and he didnt love me like

i wanted

it was just another rejection that i couldnt handle so i tried to make him love

me more by

trying to hard. now, so tired of trying i have such intense anger that at times

its

paralyzing. its hard to make friends because my life is so crazy that 1. i dont

want anyone

to know, and 2. how could i ever go back and talk about my life there is so much

to tell? 3.

i am so tired of faking it that i would rather be alone. i really didnt know

there was anyone

out there who went through the same thing. I desperatlely need help and support.

i hope

to find it here.

>

>

>

>

>

[Guest guest]

---

I love the poem. This is a wonderful site with lots of support and validation.

It helps so

much.

In my FOO, besides nada, there was just my older sister, me, and my passive

father, who

did all the caretaking and nurturing. He did not protect us from nada's rages,

and

sometimes hit us with a belt at her demand. My role was mascot. I was comic

relief and

entertainment, then as I got a little older, and especially as a rebellious

teenager, I was the

only one who would stand up to her. I told her off regularly. She hated all of

us, but I

think maybe me a little more b/c I wasn't so easily controlled by her. I was

scared of her,

still am to some extent, but at some point I realized that not standing up to

her did not

good. My father and sister were always urging me to be quiet and not say

anything back

to her, but that wasn't me. I fled for college and saw them about twice a year

until near

my father's death a few years ago. My nada has always portrayed me as " uppity "

b/c I

wanted little to do with them, as if I thought I was better.

Anyway, I could really relate to your poem as it sounded like me and my role.

Welcome.

Joanna

In WTOAdultChildren1 , " podjan13 " wrote:

>

> I'm too hurt right now to post many details. But after doing some

> research, I am confident my mother is suffering from BPD. We have

> all been suffering. This is my first time reaching out and a couple

> of years ago when I was in college I wrote a poem after a painful

> interaction with my mother. Reading it years later supports my

> theory that she has BPD. I wanted to share it. Maybe someone can

> relate...

>

> I am the object of her hate

> I speak only to prove her " truth "

> My words are only mere whispers she uses to create

> The quilt of her denial she uses

> To warm her self induced cold heart

> The created Arctic she requires

> To blame me for the faults of her desires

> Her manufactured truth

> The truth she uses to subtract the reality of the world

> And supply the void with her own

> Her reality is the family fuel

> They gulp her nourishment and feed with her on her pain

> They are warmed by her quilt

> Her quilt of pain

> My love is never conveyed

> My love is an unreality in her eyes

> The eyes given to her as a child

> The poor child pumped with pain

> Tortured by her own family

> She does the same

> My gift of perspective is a curse

> If I don't play her game

> We all feel her pain

> I see her how she is, the child

> She denies my knowledge

> She knows I see her

> She hides her cold hurt soul

> Under her shelter, her quilt of pain

> I love you so I'll live with you in your cold

> I don't need your painful warmth

> By their urges I can't be satisfied

> I won't feed on the emotional carcases like the rest

> What she thinks is me being vain

> Is just me refusing her quilt of pain

>

> -Staci

>

[Guest guest]

That is such a poignant and touching poem, podjan. It does capture

the pain of having a bpd parent very strongly. That's good that you

have a creative outlet to help you process the whole thing, both the

sadness and the freedom of discovering that your mother has bpd, that

its not you causing her distressing behaviors, its that she has a

genuinely severe mental illness.

And you are right: when someone has bpd, the whole family suffers.

-Annie

>

> I'm too hurt right now to post many details. But after doing some

> research, I am confident my mother is suffering from BPD. We have

> all been suffering. This is my first time reaching out and a couple

> of years ago when I was in college I wrote a poem after a painful

> interaction with my mother. Reading it years later supports my

> theory that she has BPD. I wanted to share it. Maybe someone can

> relate...

>

> I am the object of her hate

> I speak only to prove her " truth "

> My words are only mere whispers she uses to create

> The quilt of her denial she uses

> To warm her self induced cold heart

> The created Arctic she requires

> To blame me for the faults of her desires

> Her manufactured truth

> The truth she uses to subtract the reality of the world

> And supply the void with her own

> Her reality is the family fuel

> They gulp her nourishment and feed with her on her pain

> They are warmed by her quilt

> Her quilt of pain

> My love is never conveyed

> My love is an unreality in her eyes

> The eyes given to her as a child

> The poor child pumped with pain

> Tortured by her own family

> She does the same

> My gift of perspective is a curse

> If I don't play her game

> We all feel her pain

> I see her how she is, the child

> She denies my knowledge

> She knows I see her

> She hides her cold hurt soul

> Under her shelter, her quilt of pain

> I love you so I'll live with you in your cold

> I don't need your painful warmth

> By their urges I can't be satisfied

> I won't feed on the emotional carcases like the rest

> What she thinks is me being vain

> Is just me refusing her quilt of pain

>

> -Staci

>

[Guest guest]

I am also new to this list and I too had been searching for answers for

decades.  Everything in my family had always been so complicated, twisted,

distorted, blown out of proportion, confusing, etc., etc..  I never could tell

anyone.  If I dare spoke of anything even in a light casual joking manner I was

pounced upon.  I have been accused of betrayal, lying, delibertly turning people

against my nada and brother when in fact, I had always made excuses,

rationalized, tried to justify their behavior , actions and words until people

tired of my endless excuses. Even if I  understood and silently agreed with

something someone said about my nada or brother I was ridden with guilt and a

deep sense of remorse for betraying those that supposedly were the only people

who ever cared about me.  I also have been repeatedly brainwashed how horrible

my father and his family were and now my nada has been trying to convince me the

same about her own family.

Growing up her family were the only relations we kept up with and now I'm being

told and reminded every conversation how she was all wrong about her sister and

her sister's family.  The conversation was so bad last week-end that she

actually insisted I say my father and her sister and sister's husband were

evil.  She was screaming and raging for me to just say it-she wanted to hear it

from me.  I finally gave in and muttered the words. Pathetic as it sounds-I'm

57, but, hearing her when she is so vile and out of control frightens me so it

is sometimes easier to just give in (especially over the phone) as I fear the

neighbors in her apartment complex will call her landlord and she will get

kicked out.  I also have been the horrible person, blamed for everything.  My

nada cannot accept any responsibility for anything.  That last episode was

because her sister's son said alot of things to her in anger over the phone and

of course the only reason he

said any of it was because he got it from her sister and her sister's husband. 

My father is always blamed.  I remember joking with my brother 20 years ago who

will mom blame when dad dies.  Well, Dad died in 1989 and she is still blaming

him.  Any problems she, my brother or I have is because of my father.  She has

tried to let me know how awful everyone in the family, her friends, anyone she

meets thinks I am.  Since her nephew and my aunt are her new targets she loves

to let me know what they really think of me and repeats and twists so much my

head just spins.  I also feel like my life is such a farce.  On the outside I go

to work, I am usually joking and pleasant to strangers and I feel like such a

hypocrite as I am so unhappy, lonely, empty  and miserable inside.  I too like

to be alone and have turned myself " off " these past 8 years or so.  Noone can

hurt me anymore-I am numb.  I used to do it chemically and now I seem to have

mastered it without the aid of drugs.  The only problem with becoming numb is

you are also numb to the good things in life.  It's like nothing matters anymore

and that isn't a good space to be in.

I'm also in an emotionless relationship and have really tired of trying to

please someone who can't be pleased and no matter what I do it's generally

wrong.  I see many similarities to my nada in my significant other that I

totally freak out and can't even bare to consider the possibility that I sought

in a relationship what I was most familiar with-emotional abuse, verbal abuse,

and a total lack of respect for me as a person with feelings, thoughts, and

opinions.  I feel so full of rage at times, but, have never known how to express

anger except to beat myself up, overindulge in desserts, smoke too much  or

whatever. I also find it hard to make friends and you listed the reasons so

well.  Somehow I feel so scarred, so different, so untouchable...i have shielded

myself from the world.  I am great with strangers, people I come in contact with

at work, at a store, anywhere where they really don't have a chance to really

know me.  I don't think I am

even capable of ever having a real intimate relationship with anyone.  I have

always been the one my few friends call to vent, to cry, to pour out their

hearts, but, I have never felt I had anyone I could open up with the way others

can with me.  I never knew how to express myself in such a way where anyone paid

any attention to me.  I've always felt I'm in the background somewhere,

partially invisible and certainly not memorable.

It's Thanksgiving and I'm home today-no friends, no family just myself & my

significant other, no feeling except it's just another day.  I had been invited

to my cousins and the anxiety of the invitation has had my stomach in knots for

weeks.  The invitation was made to my nada by the same nephew who got angry with

her later on-he was the all wonderful one that day.  Instead of that being nice

somehow his nice call became an attack on me and how i've tried to turn everyone

against her and my significant other has pushed her and my brother out of the

picture and he is trying to be where they should be, blah, blah....after that

call I did NOT want to go anywhere with her.  Since that first call from her

nephew where she wanted to be with HER family that I've kept her from, he is now

split black along with both of his deceased parents and their other 2 kids and

she wouldn't hve anything to do with any of them.  It is all too much for me and

I got sick

so I'm excused from it all. (I'm afraid I use " sickness " to cope sometimes-it's

the only thing that ever gave me a break with my nada).

I think finding this group along with reading alot online has helped me make

sense of so much in my life.  I never knew other people experienced so much of

what I have experienced nor shared similar feelings.  It's actually comforting

to me to just be able to sit down, turn on the computer and read other's

experiences and how they cope and know that I have not been alone in this

journey called " life " and that there is a light at the end of the rainbow.  It

won't be easy getting to it, but, it's attainable.  I remember reading somewhere

that " acceptance is painful, but, it stops the suffering " . For every gain, there

will be pain, but, damn, it is well worth it.  I'm glad you found this group and

I hope you too will find some hope and support..

 

________________________________

To: WTOAdultChildren1

Sent: Wednesday, November 26, 2008 7:37:11 PM

Subject: new member

i am a new member to this site. i have been searching for answers for my life of

sheer hell and mental confusion. i am in my middle 30s and totally lost and very

depressed. i dont know where to turn. now that my daughter is older (teenager)

and my sister is now experiencing what i did, my disfunctional life seems to be

flashing in big bright lights in front of my eyes. i have lived with constant

chaos going from one " event " to another " event " for the last 20 years. I lived

till i was 16 thinking my dad and his family were horrible people. then till the

last 2 years I was the horrible person. now its my sister. my aunt. everyone in

my life has been isolated and i am left with nothing. i have been devasted by

this. i am a professional who lives a life that is so fake on the outside.

people have no idea the pain i feel behind the smile is so intense that here

lately i cant even think clearly. I have found myself in the grocery store

lately wandering about

because i couldnt even think clearly about what i needed even though i had a

list. I am in a marriage that is emotionless because when we met and he didnt

love me like i wanted it was just another rejection that i couldnt handle so i

tried to make him love me more by trying to hard. now, so tired of trying i have

such intense anger that at times its paralyzing. its hard to make friends

because my life is so crazy that 1. i dont want anyone to know, and 2. how could

i ever go back and talk about my life there is so much to tell? 3. i am so tired

of faking it that i would rather be alone. i really didnt know there was anyone

out there who went through the same thing. I desperatlely need help and support.

i hope to find it here.

[Guest guest]

hello, im a new member of the group and am still getting the hang of things. Im

a student working on my bachelors in social work and i work at a psych hospital.

Ive known about bpd for a while but i never connected it to my life until

recently. A few months ago i read i hateyou, dont leave me and i realized that

my mother has bpd. The realization that i wasnt the crazy one and what was wrong

with her had a name stunned me. I thought however that since i am an adult with

a child of my own now, living three states away from my mother and only talking

to her a few times a week that her disorder didnt really affect me anymore. Then

i began to recognize bpd traits in a startlingly high number of friends and

boyfriends that i have currently or have had in the past. I thought maybe i was

projecting bpd onto others and wondered if the problem was me all along until i

gave a group at work about how children of addicts often unconscienely seek out

friends and relationships with addicts when they become adults themselves. I

realized that i had done the same thing myself becuase of my relationship with

my mother. I bought swoe workbook and halfway through ch1 i began to realize how

much my mothers illness still affects me. I joined this group so that as i work

through the workbook i will have a place to talk and recieve feedback about what

im learning and feeling, hope it helps!