how to live with uncertainty of psc

[Guest guest]

Hi am a new member. My husband was diagnosed with psc last year. So

far his blood has been good but his recent mri showed more

constriction in the bile ducts. Today I am thinking about all the

things that may or may not happen- I just feel sad. But the truth is

maybe he will be fine for many many years. How do you cope with such

uncertainty? Life in general is an uncertainty so do I just chalk it

up to that? I am trying to take it as it comes but I guess with recent

Mri I am feeling a set back. Thanks for listening.

[Guest guest]

One day and one problem at a time!

PSC '01

>>> rsassoon73 1/24/2008 12:15 PM >>>

Hi am a new member. My husband was diagnosed with psc last year. So

far his blood has been good but his recent mri showed more

constriction in the bile ducts. Today I am thinking about all the

things that may or may not happen- I just feel sad. But the truth is

maybe he will be fine for many many years. How do you cope with such

uncertainty? Life in general is an uncertainty so do I just chalk it

up to that? I am trying to take it as it comes but I guess with recent

Mri I am feeling a set back. Thanks for listening.

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[Guest guest]

This was hard for me to accept as well.My son has the disease but I try to keep informed for both of us.The PSC conferences have helped me tremendously and I wouldurge you to come this year if at all possible.It really helps to meet with those who have been dealing with this disease for years andto have the chance to question the experts.All the information can be found on the Partners web site.www.pscpartners.orgI had to fight the disease to fight the sadness. So now I focus on raisingmoney for research and continuing to educate myself in order to help my son.This support group has been wonderful and they will help you.LeeHi am a new member. My husband was diagnosed with psc last year. Sofar his blood has been good but his recent mri showed moreconstriction in the bile ducts. Today I am thinking about all thethings that may or may not happen- I just feel sad. 

[Guest guest]

>

> I was diagnosed about 11 years ago and just hit me. I was in

perfect health, on top of the world... I really didn't know what to

think about it or what to do. I also was diagnosed with UC at the

same time. I was REALLY, sad, upset, confused, frustrated... all of

the feeling but never happy... so I sat down to say prayers and I ran

into this prayers. It REALLY helped and warmed my heart. I hope it

does the same for you.

>

> " O My servants! Sorrow not if, in these days and on this earthly

plane, things contrary to your wishes have been ordained and

manifested by God, for days of blissful joy, of heavenly delight, are

assuredly in store for you. Worlds, holy and spiritually glorious,

will be unveiled to your eyes. You are destined by Him, in this world

and hereafter, to partake of their benefits, to share in their joys,

and to obtain a portion of their sustaining grace. To each and every

one of them you will, no doubt, attain. " - Baha'i Faith

>

> ps. I hope the posting doesn't upset anyone.

>

>

> Arman

> arman_shirin@...

>

>

>

________________________________________________________________________________\

____

> Never miss a thing. Make Yahoo your home page.

> http://www.yahoo.com/r/hs

>

what do you do to stay healthy?

[Guest guest]

I am a big beliver in alternative medicine... so I take my medicine that my doctor gives me.. Urso... I take Mike thistle 2 pills 2x a day... I take this heomotoxology medicine... it's some stuff I take oraly and inject... I take fiber... multi vitamin

I also take Aloe Vera juice and pills. I have a physician friend (both a MD and PHD) that does research on Aloe Vera and colitis... he has created a Aloe Vera juice and pills that helps with UC and it has helped my PSC as well.

You have to also watch your food. My wife has been very involved on what we eat. Avoiding processed or not so good foods. There is a lot of research you have to do and see what works with you and your lifestyle. I know people that have given up meat and it has helped. Some have gone organic.. some have given up dairy...

I also pray a lot. It keep me emotionally stable. Praying is probably as important as any of the medicines I take.

Let me know if I can help in any way.

Arman

arman_shirin@...

Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.

[Guest guest]

--- In , " Arman, Shirin, Niki & Mateen "

<Thank for all the great information. he takes many of the same meds

and vitamins._thanks for your

support.________________________________________________________________________\

________

> Looking for last minute shopping deals?

> Find them fast with Yahoo! Search.

http://tools.search.yahoo.com/newsearch/category.php?category=shopping

>

[Guest guest]

I didn't do so well coping with the uncertainty of this whole thing at first. I was diagnosed in March 2007 and then my thirty-year old brother died unexpectedly in May 2007 (not PSC related) . I was pretty much a mess. I sat down and updated my will, assembled lists of life insurance policies and contact info, and made sure that my husband understood how to pay the bills. I tried to fill in all the gaps for my husband that my sister-in-law and my little niece and nephew were struggling with after my brother's death. Then when I was done I realized that was about all that I could control and that it really didn't change a darn thing....and that I wasn't technically any closer to being dead or deathly ill then I was before. I realized that unlike my brother, I had a wonderful reminder that life is not permanent and that things change unexpectedly.

Sure there are days when I feel crappy but I can't change it I can only change how I think about it. I was reading a book that said "contentment was a choice" and I try to remind myself of that every time I face a rough patch. I've decided that there is a lesson for me to learn in my psc adventure and that if I keep my eyes open I will figure it out. In the mean time, I try to make an effort to do the things that I always wanted to do but never made the time for like becoming a certified scuba diver and hopefully this summer hiking the Inca trail to Machu Piccu. We all cope with the uncertainty differently and we all stuggle at times but you will find the way that helps you handle it. Just trust in yourself, you are stronger than you think. Darcyrsassoon73 .

Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.

[Guest guest]

Hi Darcy,What a great attitude !You should come to our PSC conference and share it !Lee Then when I was done I realized that was about all that I could control and that it really didn't change a darn thing....and that I wasn't technically any closer to being dead or deathly ill then I was before.  I realized that unlike my brother, I had a wonderful reminder that life is not permanent and that things change unexpectedly.    Sure there are days when I feel crappy but I can't change it I can only change how I think about it.  I was reading a book that said "contentment was a choice" and I try to remind myself of that every time I face a rough patch.  I've decided that there is a lesson for me to learn in my psc adventure and that if I keep my eyes open I will figure it out.  In the mean time, I try to make an effort to do the things that I always wanted to do but never made the time for like becoming a certified scuba diver and hopefully this summer hiking the Inca trail to Machu Piccu.   We all cope with the uncertainty differently and we all stuggle at times but you will find the way that helps you handle it.  Just trust in yourself, you are stronger than you think.  

[Guest guest]

I always remember Norm -- a former group member who lived with PSC, but

died when a vehicle struck the bike he was riding.

Life is uncertain. Today is all any of us really have.

Pam

(mom to Quantell, 17, dx 1996, tx 2001, dx recurrence with AIH overlap

2006)

[Guest guest]

Well said, Pam. What's the expression? Dream as if you'll live

forever, live as if you'll die today.?

In April of 1997, the two transplant surgeons who did my

hepaticojejunostomy said that my life expectancy at that time could be

measured in hours if they hadn't found what caused that infection.

Since then, I've gone through some very tough times, but -- if I had

wasted the time, I would have missed a whole lot of living. So,

dream, love, laugh, get long magazine subscriptions, but skip

skydiving (maybe) and running with the bulls in Spain!

Norm was quite an inspiration to all of us!

Penny

P.s. Pam, how is your amazing family?

>

> I always remember Norm -- a former group member who lived with PSC, but

> died when a vehicle struck the bike he was riding.

>

> Life is uncertain. Today is all any of us really have.

>

> Pam

> (mom to Quantell, 17, dx 1996, tx 2001, dx recurrence with AIH overlap

> 2006)

>

[Guest guest]

This is something that I'm still dealing with. Having 4 young

children makes it hart to just wait and see what will happen. And I'm

a " planner " lol so that makes it harder too.

When I had an MRI done it showed that things were a lot worse than

they actually were when we did the ERCP so that's one thing to think

about, maybe that could be the case as well.

And basically, I just have to set it off to the side. Some days I

have a hard time, especially when I have a lot of pain, but I just try

to put it to the back of my mind and focus on what I have and what's

going on now and within the next week. Staying busy helps. I've also

talked to my husband about things, about the " what if's " . I know that

PSC is not a death sentence but it's got me thinking a lot about death

and that I eventually will die. So we've started looking into who

will care for our kids if we die and other things that everyone should

have an idea of. That makes me feel more in control of my future.

I keep a symptoms journal that way I can try and pin point things that

happen before I feel worse, my lft's go up, or before I get

cholangitis again.

I hope these things help a little. It's a struggle for me, more days

than others, but I don't wnat to spend the next year or ten years

waiting to get really sick and then look back at what I missed out on.

PBC 10/06

PSC 8/07

[Guest guest]

: I know what you are talking about. I am 65 and found out

about my PSC in July of 07 are having a hard time coping with what is

in the future. The best idea that I can give you, as suggusted by

another PSC'er, have faith and try to keep as normal of life as

possible. I know that there will be some down times and so I just try

to roll with the punchs. You have to remember that there are people

that have lived with this ailment for over 20 years. How have they

coped? I asked this same question about a month ago and got several

good responses. All any of us can tell you to just hang in there.

Be sure and get educated. There are several sites on the computer

that you can go to. ALL of us wish you good luck and best wishes.

LEE G

>

> This is something that I'm still dealing with. Having 4 young

> children makes it hart to just wait and see what will happen. And

I'm

> a " planner " lol so that makes it harder too.

>

> When I had an MRI done it showed that things were a lot worse than

> they actually were when we did the ERCP so that's one thing to

think

> about, maybe that could be the case as well.

>

> And basically, I just have to set it off to the side. Some days I

> have a hard time, especially when I have a lot of pain, but I just

try

> to put it to the back of my mind and focus on what I have and

what's

> going on now and within the next week. Staying busy helps. I've

also

> talked to my husband about things, about the " what if's " . I know

that

> PSC is not a death sentence but it's got me thinking a lot about

death

> and that I eventually will die. So we've started looking into who

> will care for our kids if we die and other things that everyone

should

> have an idea of. That makes me feel more in control of my future.

>

> I keep a symptoms journal that way I can try and pin point things

that

> happen before I feel worse, my lft's go up, or before I get

> cholangitis again.

>

> I hope these things help a little. It's a struggle for me, more

days

> than others, but I don't wnat to spend the next year or ten years

> waiting to get really sick and then look back at what I missed out

on.

>

>

> PBC 10/06

> PSC 8/07

>

[Guest guest]

-----Original

Message----- How

do you cope with such uncertainty?

Ken was dx in 1999 as

stage 4 (end stage - cirrhosis.)

First we panicked. Second we read everything we could get

our hands on. Third we vowed to do

everything in our power to fight it.

That left us…..getting

his blood checked every 3 months, watching and

charting all of his lab numbers. We’d

get excited (and not in a good way) at the least little bit of change. Finally, (after about 3 years of this

nonsense) we found out we were our own worse enemy. We got rid of that doctor (and I use the

term loosely) and just saw Ken’s GI. Getting tested that often was a silly

waste of time (and blood).

With Dr Aubrey’s

help (I took to heart what he told us) we started to ask – Ken, how do

you feel? If the answer was “good”,

we ignored everything else. If the

answer was something else, we worked on getting that

problem fixed. We totally stopped watching any labs except

the ones that counted – Bilirubin, Creatinine and INR. Think MELD score, those are the only numbers

they use to transplant. All the

other labs go up and down at will and there are so many variables (how much

water did you drink, did you exercise etc.) that watching them is meaningless. When the big 3 start to change, pay

attention, but not one second before.

IMHO, the very best

thing you can do for your own health is this – when you get up in the

morning (after your cup of coffee) - ask yourself…..

How do I feel? That’s all that

matters! How do you feel today? I know - I

know - it sounds too simple to work.

But….what else really matters? If you feel good, go to work, go to

church, go on vacation, take care of the kids, get your hair cut, visit family,

the mall – whatever you want to do, the rest is meaningless information,

let the doctor (or caretaker handle it.) If you can do this and tune out all the

other stuff, you’ll be surprised at how good you actually feel everyday. Sure you’ll have some bad days, but

they aren’t nearly as many as you think there will be. Ken was in stage 4

cirrhosis for 7 years and could have gone a lot longer before transplant. We wasted so many years worrying

needlessly – go forth and live! HTH

Barb in Texas - Together in the Fight, Whatever it Takes!

Son Ken (33) UC 91 - PSC 99 - Tx 6/21 & 6/30/07 @ Baylor in Dallas

[Guest guest]

I too welcome and now how hard the first time you hear a dignois of a chonic illness. It does require that you allow your self to grieve. This grife will be less as three will be periods of several good days and months in a roll and then others that are not so good. The only suggestion I can offer add laughter as much as you can as often as you can and enjoy the good days and dont feel guilty for the bad days, just let be what it is and learn as much as you can which well very according too your own situation. Good luck and my support from diane wrote: >> Hi am a new member. My husband was diagnosed with psc last year. So> far his blood has been good but his recent mri showed more> constriction in the bile ducts. Today I am thinking about all the> things that may or may not happen- I just feel sad. But the truth is> maybe he will be fine for many many years. How do you cope with such> uncertainty? Life in general is an uncertainty so do I just chalk it> up to that? I am trying to take it as it comes but I guess with recent> Mri I am feeling a set back. Thanks for listening.>Hello and welcomeHaving received the confirmation of PSC in 2005, to me it felt likeI'd been hit by a truck. Emotionally, I was frequently feelingdepressed. My partner says of me now that I was in a far more dourmood then and that recently (approx. the last 6 months) I seem to bemuch better

adjusted.I think that while being told bad news comes with it a certain amountof grieving, we need to learn not to let it rule our lives [iknow--easier said then done]. I think all of us would love to be ableto "turn back the clock" or "wave a magic wand" and make "this" all goaway. As you said, life is full of uncertainty; however, we need to learn tore-frame the information we've been given so that it doesn't end updestroying us emotionally. [i'd say this is one of those cases oflearning to make lemonade since we seem to be drowning in lemons.] So for some people in this group, they've found it helpful to use thisforum simply as having somewhere to voice their concerns or as aresource for information. Others have sought comfort in prayer and/ormeditation. For myself, I've done a lot of reading both here, in booksand online. I continue to exercise. I see the growing list of docs atregular intervals.

I've adjusted my diet by avoiding foods thatdisagree with me. I've not yet given up alcohol since I've not beentold I have to and I make sure I take my meds -- mostly on time withthe occasional oops! And I try, though sometimes it's not easy, tocontinue living as if the PSC is just another piece of the puzzle thatmakes me--me.After all, as someone stated here previously, PSC is a part of me butit doesn't define me. I think the best we can do is to live life tothe fullest and I realize that's different for all of us. Continuetaking risks--if you've never done it, try scuba diving or participatein a triathlon, for example. Is there risk involved in thoseactivities? Absolutely. But at the end of the day, I'd rather risktrying than not try at all. At worst, you can find out you don't likesomething or, better yet, you'll discover the thrill of swimming witha school of fish at 100 feet.Ok, that was a bit

long-winded so I'll get off of my soap box... Never miss a thing. Make Yahoo your homepage.

Never miss a thing. Make Yahoo your homepage.

[Guest guest]

>

I have to agree with the advice to try new things. I was diagnosed

with psc last may, and since then, I have stopped seeing it so much

as a source of bad news, but it has also made me a better person. I

find that I am nicer to people (it's easy to get caught up in

everyday nuisances and become cranky to others), and going after

things that I really want. I went skydiving for the first time, and

when spring returns, I plan to go back and maybe get my skydiving

license. I have tons more adventures planned, and I can't wait to do

them. So, yes, it is hard to live with something that is so

uncertain, especially when your test results may not always reflect

how lousy you may sometimes feel, those lousy ties make you

appreciate the good, healthy days MUCH more. You appreciate the

good, little things much more as well. Would we all love to

magically get rid of psc? Of course!! But, while we all wait for a

cure, just use it as a prompt to make your life better and happier.

See psc as a blessing in disguise. Use it as an excuse to do all the

wild and fun things you may have always said that you'll get around

to one day.

> >

> > Hi am a new member. My husband was diagnosed with psc last year.

So

> > far his blood has been good but his recent mri showed more

> > constriction in the bile ducts. Today I am thinking about all the

> > things that may or may not happen- I just feel sad. But the

truth is

> > maybe he will be fine for many many years. How do you cope with

such

> > uncertainty? Life in general is an uncertainty so do I just

chalk it

> > up to that? I am trying to take it as it comes but I guess with

recent

> > Mri I am feeling a set back. Thanks for listening.

> >

>

> Hello and welcome

>

> Having received the confirmation of PSC in 2005, to me it felt like

> I'd been hit by a truck. Emotionally, I was frequently feeling

> depressed. My partner says of me now that I was in a far more dour

> mood then and that recently (approx. the last 6 months) I seem to

be

> much better adjusted.

>

> I think that while being told bad news comes with it a certain

amount

> of grieving, we need to learn not to let it rule our lives [i

> know--easier said then done]. I think all of us would love to be

able

> to " turn back the clock " or " wave a magic wand " and make " this "

all go

> away.

>

> As you said, life is full of uncertainty; however, we need to

learn to

> re-frame the information we've been given so that it doesn't end up

> destroying us emotionally. [i'd say this is one of those cases of

> learning to make lemonade since we seem to be drowning in lemons.]

>

> So for some people in this group, they've found it helpful to use

this

> forum simply as having somewhere to voice their concerns or as a

> resource for information. Others have sought comfort in prayer

and/or

> meditation. For myself, I've done a lot of reading both here, in

books

> and online. I continue to exercise. I see the growing list of docs

at

> regular intervals. I've adjusted my diet by avoiding foods that

> disagree with me. I've not yet given up alcohol since I've not been

> told I have to and I make sure I take my meds -- mostly on time

with

> the occasional oops! And I try, though sometimes it's not easy, to

> continue living as if the PSC is just another piece of the puzzle

that

> makes me--me.

>

> After all, as someone stated here previously, PSC is a part of me

but

> it doesn't define me. I think the best we can do is to live life to

> the fullest and I realize that's different for all of us. Continue

> taking risks--if you've never done it, try scuba diving or

participate

> in a triathlon, for example. Is there risk involved in those

> activities? Absolutely. But at the end of the day, I'd rather risk

> trying than not try at all. At worst, you can find out you don't

like

> something or, better yet, you'll discover the thrill of swimming

with

> a school of fish at 100 feet.

>

> Ok, that was a bit long-winded so I'll get off of my soap

box...

>

>

[Guest guest]

Barb, I have to agree with you about the " how do I feel today? " Question. If I am itchy, my joints hurt, my right side hurts, and my pee looks like iced tea, there's a problem. Something has to be examined/looked at/fixed. If my LFTs are a bit out of whack......eh...whatever. They are going to look weird sometimes.

My PSC and Crohn's make me mad and sad sometimes. I'm not really to the point that I can describe any type of a silver lining behind the cloud. However, it's much easier for me to have a diagnosis than to feel like a lazy hypochondriac. My liver enzymes started jumping up and down when I was in college, at 18 and 19. I was diagnosed at 36. At least once you get a diagnosis, you can put a name to all the symptoms.