life issues with PSC

[Guest guest]

Hi ,

You bring up many issues with PSC that you've already run into at the

tender age of 29, but beginning at the age of 15. I'm 60 years old and

I run into the same things. Before I started getting sick 2.5 years

ago, I had just started a graduate degree and almost made it through

the first year (I was able to finish the degree...I'm not sure how).

You mention things that I deal with.

You said you've lost girlfriends because of the PSC. I've lost 2

boyfriend-potentials this year because of PSC. Both of them were

impatient with me to " get better, " and the last one even told me that

I wasn't doing everything I could for my liver because I wasn't taking

milk thistle. (When I did more research on it, it turns out that Mayo

Clinic recommends NO milk thistle if you're taking ursodiol, which I

am...be he was gone by then.) He also accused me of " wallowing " in the

disease. That really really hurt because it discounted how hard I work

on doing just the opposite. I've been in the hospital 5 times over a

6-month period with cholangitis and intestinal problems due to being

slammed with so many antibiotics and forgetting to take enough

acidophilus to recover my good bacteria. I just celebrated being

hospital-free for one month (now I'm 6 weeks hospital-free!). Before

that conversation, we were getting along really great and I felt

hopeful about having a relationship that could last. I am seeing

Boyfriend #1 again as a friend only because he insisted on being

friends with me no matter what. He took the time to gain some insight

about his own impatience and how that pressured me, and he gained some

understanding about what it's like for me to deal with this disease.

Someone like this will come along for you, too, I just know it.

My internist recommended that I go on disability and I've been

fighting that. But in reality I can't work more than part-time. I'm

trying to build my business as a freelance writer and editor and a

writing tutor, but I need some steady income, too. Of course, with

most part-time jobs, you don't get health benefits, so I don't have

health insurance right now. I do have Colorado Indigent Care Program

coverage till next summer, so I'm hoping I'll be making enough money

to get CoverColorado, a health insurance that is mandated by the state

to cover anyone who can't get coverage elsewhere. It's expensive, but

it's good insurance.

I don't know what else to do right now. I feel pretty good now but I

am depressed and take 2 antidepressants and go see a therapist for $10

a session at CU-Denver. Their offices close for the academic break and

I won't see a therapist through the darkest part of the year. I will

lean on my friends again and try to do what I can to stay out of the

dumps. Trouble is, I'm already depressed and I feel it sucking me

under again right now. I'm doing everything I can think of to stay out

of that place.

I think the social aspects of PSC are great and mighty challenges. It

is not for the weak of heart. I work on meditating and building my

spirituality. I have a little prayer that I say all the time. It was

written by of Avila many centuries ago and is very simple. I'm

not religious, but I am spiritual and believe this is where my real

hope lies. If you write to me personally at waterbear7@..., I'll

send you this 6-line prayer. I just don't want to lay my spirituality

on anyone else that may find it offensive.

Don't think too little of your liberal arts degree. You're better off

having a generalist degree because you're not stuck in a slot with a

more specific degree. Employers are looking for someone who wants to

work and wants to learn and can get along with others. You've gained a

lot of compassion for others in your young life so far BECAUSE of PSC.

I'm sure you're much more mature than others your age and can get

along easily with all kinds of people. This makes you a plus in

employment. As for education, you can go to school and get

certifications through work.

I like your attitude. You have a lot to add to this group and to the

young people who, as you say, can't articulate their feelings. You are

speaking for them, and reminding us all of the young people who have

this tricky disease and don't have the maturity you do now, nor the

security and maturity of some of the others on the group. I might be

mature but I don't have security because of other things that have

happened in my life, too. I try not to compare myself to others here

who have lots of family support and health insurance and all of those

things. When it all gets boiled down, we have to individually live our

destinies and diseases and face a lot of things alone.

Keep the faith. You're a special guy and you deserve good things in

your life. I'll pray for you. (And don't forget to ask me to send you

the of Avila prayer.)

Dana

PSC 2/06

Praying for you Jacky, Life with this PTC Tube and the issues of th

Posted by: " ANDREW " irvgottti2002@... irvgottti2002

Date: Sun Dec 2, 2007 12:38 am ((PST))

Dear friends here, this is really my first commitment to a psc group.

Before i just wanted to be to myself because this psc disease can

make you feel anger to depression to other thoughts i won't mention.

I have this PTC tube in and i have to change it every so often. The

first they did it, it hurt like hell but after having it done a

couple times it's fairly routine. The problem i have is taking a

shower, because i hate getting the dressing wet. I don't change the

dressing i just try to keep it dry. It might be a bad thing but it's

a pain to change it and play with it. Last time it fell out of my

side and i had to wait overnight for radiology to put it back in.

The reason i have the ptc tube is because they can't move the sludge

or stone at the bile duct, so this is what keep the bile draining. I

flush the ptc twice a day to. Right now thank god the liver numbers

are normal with 2.5 prograf but my psc has returned even though i had

a transplant 2005. Right now my social security got cut but i still

have medicare and medicaid. It's been hard to get my life on track

and i'm 29 years old. God bless my parents that continue to be there

for me. But this economy is tanking and i have to find some way to

work. I did finish college but i think im going to do medical

billing, i have B.S in liberal arts which is useless if you ask me.

So right now i have to change careers so it can fit my disability.

I live in a bad neighborhood (Far Rockaway Queens) in nyc due to the

cost of medical bills and my parents can't retire because of me. I

think this disease robs people of alot of things. I hope we can have

discussion on the effects this disease has on the family and their

money. I've had psc since i was 15 years old, my prespective is from

a teenager growing into manhood and trust me i've suffered alot,

losing girlfriends all types of things. But i keep the faith and when

i go to Mount Sani Hospital i shake my head when i see young kids and

teenagers with kidney disease and liver disease because the doctors

never prepare you for the future they always give you positive

enforcement which i like but it can be misguiding. But i think they

need to prepare people for the future especially young people so they

understand you more than likely won't be able to live on your own

without some help.

But i keep the faith , i don't drink or smoke. I just have to live

the cards that we are delt. As bad as my situation is, their are

people worse off then psc people like myself. I'm happy i can move

around and do basic things in life but this disease destroys

exceptional people because if i never had this disease i probaly

would be in the streets doing god knows what in new york city. So i

had to do well in college and watch my health.

I'm praying for everybody here and the young people that can't

articulate the way they would want too. Trust me i've yelled at my

parents, taking out my anger out on them (predisone didn't help) i've

been depressed, im ashamed of it because i was in my early 20s and

just out of my teenage years, but i rather talk about here even

though some people wouldn't like to admit the issues psc people go

through. It's a struggle sometimes just to get out of bed but i keep

the faith and i liking reading this support group.

Brown UC 94 psc 95 tx 05 psc again

[Guest guest]

So Sorry that you have had very unsympathetic partners.Not all people

are like that. All I can say is they couldn't truly love you as when

you love someone you love them no matter what.My partner Steve has

been my rock and has been there for me though the good times and the

rough times and loves me no matter how ill I am. I have only been with

him for just over 7 years now and have been ill from Day one of our

relationship I had cancer when I first meet him and despite all the

horrible things I had too go though to get better from that he still

stayed by my side and we were just friends then. I knew then that he

was the man for me and I haven't looked back.When I was told I had psc

as well it was a bit of a blow but Steve is still with me supporting

me and taking care of me.So don't give up hope the right person will

come along for you too.

[Guest guest]

Dear I'm glad you have a solid relationship, i guess i don't try hard enough. Psc can make you feel that you just want to be alone at times. At other times it's human nature to want to have a companion. Brownkelly-joy wrote: So Sorry that you have had very unsympathetic partners.Not all peopleare like that. All I can say is they couldn't truly love you as whenyou love someone you love them no matter what.My partner Steve

hasbeen my rock and has been there for me though the good times and therough times and loves me no matter how ill I am. I have only been withhim for just over 7 years now and have been ill from Day one of ourrelationship I had cancer when I first meet him and despite all thehorrible things I had too go though to get better from that he stillstayed by my side and we were just friends then. I knew then that hewas the man for me and I haven't looked back.When I was told I had pscas well it was a bit of a blow but Steve is still with me supportingme and taking care of me.So don't give up hope the right person willcome along for you too.

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[Guest guest]

Dear Dana I read your story and i totally understand where you are coming from relationship wise. At first i would blame the partners but i realized hey if you don't want to be with a "sick" person i can understand that. From our prespective it's natural to feel depressed, when i feel depressed i listen to music, and just work on my computer skills just in case i have to get a fulltime job. The economy is going to hit people like us harder because we have to be technically "poor" to get medical insurance and our medication. That's why i don't like politics because they assume people go on disability and welfare because their low lives. I think your a sincere person and i'm suprised i can find people that can relate to me and my issues. I really identify with your struggle, hospital stays and stomach problems. Sometimes i just wonder what it would be like for the world to end. I hope that's not a negative thought but i don't know.

This disease makes people wiser but robs them of the ability to captialize off it. I will pray for the best for everybody and you because i can't stand people that are healthy and throw their life away. BrownDana wrote: Hi ,You bring up many issues with PSC that you've already run into at thetender age of 29, but beginning at the age of 15. I'm 60 years old andI run into the same things. Before I started getting sick 2.5 yearsago, I had just started a

graduate degree and almost made it throughthe first year (I was able to finish the degree...I'm not sure how).You mention things that I deal with.You said you've lost girlfriends because of the PSC. I've lost 2boyfriend-potentials this year because of PSC. Both of them wereimpatient with me to "get better," and the last one even told me thatI wasn't doing everything I could for my liver because I wasn't takingmilk thistle. (When I did more research on it, it turns out that MayoClinic recommends NO milk thistle if you're taking ursodiol, which Iam...be he was gone by then.) He also accused me of "wallowing" in thedisease. That really really hurt because it discounted how hard I workon doing just the opposite. I've been in the hospital 5 times over a6-month period with cholangitis and intestinal problems due to beingslammed with so many antibiotics and forgetting to take enoughacidophilus to recover my good

bacteria. I just celebrated beinghospital-free for one month (now I'm 6 weeks hospital-free!). Beforethat conversation, we were getting along really great and I felthopeful about having a relationship that could last. I am seeingBoyfriend #1 again as a friend only because he insisted on beingfriends with me no matter what. He took the time to gain some insightabout his own impatience and how that pressured me, and he gained someunderstanding about what it's like for me to deal with this disease.Someone like this will come along for you, too, I just know it.My internist recommended that I go on disability and I've beenfighting that. But in reality I can't work more than part-time. I'mtrying to build my business as a freelance writer and editor and awriting tutor, but I need some steady income, too. Of course, withmost part-time jobs, you don't get health benefits, so I don't havehealth insurance right now. I

do have Colorado Indigent Care Programcoverage till next summer, so I'm hoping I'll be making enough moneyto get CoverColorado, a health insurance that is mandated by the stateto cover anyone who can't get coverage elsewhere. It's expensive, butit's good insurance.I don't know what else to do right now. I feel pretty good now but Iam depressed and take 2 antidepressants and go see a therapist for $10a session at CU-Denver. Their offices close for the academic break andI won't see a therapist through the darkest part of the year. I willlean on my friends again and try to do what I can to stay out of thedumps. Trouble is, I'm already depressed and I feel it sucking meunder again right now. I'm doing everything I can think of to stay outof that place.I think the social aspects of PSC are great and mighty challenges. Itis not for the weak of heart. I work on meditating and building myspirituality. I have a

little prayer that I say all the time. It waswritten by of Avila many centuries ago and is very simple. I'mnot religious, but I am spiritual and believe this is where my realhope lies. If you write to me personally at waterbear7 (AT) gmail (DOT) com, I'llsend you this 6-line prayer. I just don't want to lay my spiritualityon anyone else that may find it offensive.Don't think too little of your liberal arts degree. You're better offhaving a generalist degree because you're not stuck in a slot with amore specific degree. Employers are looking for someone who wants towork and wants to learn and can get along with others. You've gained alot of compassion for others in your young life so far BECAUSE of PSC.I'm sure you're much more mature than others your age and can getalong easily with all kinds of people. This makes you a plus inemployment. As for education, you can go to

school and getcertifications through work.I like your attitude. You have a lot to add to this group and to theyoung people who, as you say, can't articulate their feelings. You arespeaking for them, and reminding us all of the young people who havethis tricky disease and don't have the maturity you do now, nor thesecurity and maturity of some of the others on the group. I might bemature but I don't have security because of other things that havehappened in my life, too. I try not to compare myself to others herewho have lots of family support and health insurance and all of thosethings. When it all gets boiled down, we have to individually live ourdestinies and diseases and face a lot of things alone.Keep the faith. You're a special guy and you deserve good things inyour life. I'll pray for you. (And don't forget to ask me to send youthe of Avila prayer.)DanaPSC 2/06Praying for you

Jacky, Life with this PTC Tube and the issues of thPosted by: "ANDREW" irvgottti2002 (AT) yahoo (DOT) com irvgottti2002Date: Sun Dec 2, 2007 12:38 am ((PST))Dear friends here, this is really my first commitment to a psc group.Before i just wanted to be to myself because this psc disease canmake you feel anger to depression to other thoughts i won't mention.I have this PTC tube in and i have to change it every so often. Thefirst they did it, it hurt like hell but after having it done acouple times it's fairly routine. The problem i have is taking ashower, because i hate getting the dressing wet. I don't change thedressing i just try to keep it dry. It might be a bad thing but it'sa pain to change it and play with it. Last time it fell out of myside and i had to wait overnight for radiology to put it back in.The reason i have the ptc tube is because they can't move the

sludgeor stone at the bile duct, so this is what keep the bile draining. Iflush the ptc twice a day to. Right now thank god the liver numbersare normal with 2.5 prograf but my psc has returned even though i hada transplant 2005. Right now my social security got cut but i stillhave medicare and medicaid. It's been hard to get my life on trackand i'm 29 years old. God bless my parents that continue to be therefor me. But this economy is tanking and i have to find some way towork. I did finish college but i think im going to do medicalbilling, i have B.S in liberal arts which is useless if you ask me.So right now i have to change careers so it can fit my disability.I live in a bad neighborhood (Far Rockaway Queens) in nyc due to thecost of medical bills and my parents can't retire because of me. Ithink this disease robs people of alot of things. I hope we can havediscussion on the effects this disease has on the

family and theirmoney. I've had psc since i was 15 years old, my prespective is froma teenager growing into manhood and trust me i've suffered alot,losing girlfriends all types of things. But i keep the faith and wheni go to Mount Sani Hospital i shake my head when i see young kids andteenagers with kidney disease and liver disease because the doctorsnever prepare you for the future they always give you positiveenforcement which i like but it can be misguiding. But i think theyneed to prepare people for the future especially young people so theyunderstand you more than likely won't be able to live on your ownwithout some help.But i keep the faith , i don't drink or smoke. I just have to livethe cards that we are delt. As bad as my situation is, their arepeople worse off then psc people like myself. I'm happy i can movearound and do basic things in life but this disease destroysexceptional people because if i

never had this disease i probalywould be in the streets doing god knows what in new york city. So ihad to do well in college and watch my health.I'm praying for everybody here and the young people that can'tarticulate the way they would want too. Trust me i've yelled at myparents, taking out my anger out on them (predisone didn't help) i'vebeen depressed, im ashamed of it because i was in my early 20s andjust out of my teenage years, but i rather talk about here eventhough some people wouldn't like to admit the issues psc people gothrough. It's a struggle sometimes just to get out of bed but i keepthe faith and i liking reading this support group. Brown UC 94 psc 95 tx 05 psc again

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