Re: The Life Of PSC (POEM)/(Short Story) My feelings

May 24, 2008

It sounds like you have no hope. I was diagnosed 19 years ago. Advances in medicine have kept me alive such that I now have 4 sons the youngest 13. I now expect I will live long enough to see the youngest one graduate. Don't give up hope. You will see your daughter graduate and perhaps marry.

Ian (52) PSC 89

Born to a mother and father in Buffalo NY 1976Little baby boyOnly ChildOnly Child with PSC...........................I miss the days of hanging out with my family and grandparents. Riding my bike for fun or going for walks at night

I loved the beach, sand and water, as it transforms everytime the water comes in.I miss being a 5 year old in school again, learningI miss the mall, working and owning my own place.And at about 23yo.......................................

PSC enters my life through UC. How painful it was. What I was growing up to be. 60lbs Heavier from steroids, asthma, and more.WHat did I do Lord, why do I deserve this?Now at 32 I have a beautiful little girl.

Born to mother and father (of PSC) 2003.Only ChildOnly child with a father with PSC.The days I will miss. Weddings, grandchildren, colledge, etc.Sweety, I apologize that I will not be there for you if I were to

die. I AM SORRY...................I am SO SCARED OF DYING!!! I want to see my daughter grow up, finish school, colledge, get married, and have a grandchild. I feel like an outer shell and my brain is navigating my body. I can't stand to look

at the scaring from gaining weight. I have the hair loss that is really putting me down as well.I turn 35. And then I die. I am laid out for all those to see me. Not the real me but a shell of me. A shell of meds has deformed my body

to look as someone else. I leave my body to see what the other side is like. It is different. Quiet. I can't see any of my family anymore. THIS IS WHAT I WAS SCARED OF!!!!! Now it is quiet. I sit thinking about my wife and daughter. I wish I could have done more or

had someone done more to help. How will my little girl grow up to be? Will she stay away from drugs? I WILL NEVER KNOW...... I have been overcome by PSC and I have faced the end.God Bless all of you who are fighting and keep fighting. We will have

a cure one day

May 24, 2008

Well, successful poems are supposed to trigger feelings and this one certainly did !I guess to name the feelings it gave me would be, fear and sadness.I recognize them from my own dark days that used to be way too frequent.I just wish there was another ,longer, verse called hope !Since I am the caretaker and it is my son who has the PSC, I have to respect that Ican't truly know what it feels like to be in his or your shoes.I do know that when my son was first diagnosed, there were many dark days with dark thoughts.Those dark days are few now, as working with PSC Partners has given me purpose and hope.When a dark day raises it's ugly head and fills me with doubt, I work harder. I write another letter,call another friend, surf the web for new fundraising ideas. Anything I can do to feel like I amhelping to find another path for my son.I hope that you will write another poem when you feel the light in your life rather than the darkness.I have no doubt that better days are coming and that when you are 35 you will be here and givingadvice to those who might have worries about their future. Please don't let your thoughts and feelings overcome you before the PSC !! Share with us as you just did and let us help. If you are a reader, you might want to read " A New Earth " by Eckhart Tolle and his previous book "The Power of Now".These are "thinking " books and can help you deal with suffering. For those of you also reading this book, I found it interesting that Tolle suggest that PSC would not be our enemy and that we should not be in a "fight" with it as thissets us up to do the opposite of what we would like. So.... I have been thinking our "whatever it takes" is perfect and wemight want to change the "Together in the Fight" part. He says, "what you resist, persist". For those of you reading thisbook this small part is on page 75. I would be interested in what others think of this book, you can email me privately.So for now, Together in the Search for a better treatment of PSC !!LeeBorn to a mother and father in Buffalo NY 1976Little baby boyOnly ChildOnly Child with PSC...........................

May 24, 2008

I am sorry that I was not able to answer you about your physical

symptoms and that I only addressed

your poem and where you seem to be with your thoughts.

I saw at least one member answered you about the actual physical side

of your problems with fatigue.

Have you had a frank discussion with your doctor about getting any

help for the physical symptoms as

well as the depression they are causing? Let us know what you are

trying and have tried.

Maybe we can help you to feel better.

Lee

May 25, 2008

Don't get me wrong, I am not depressed all the time, it is just where

I am located in VA that there is not many docs up on this disease. I

hate traveling to go see a doctor especially after you have seen one,

they want to see you every 3 months or so. Money is tight, gas is

high, insurance companies keep saing " This med is no longer covered "

and you pay from your own pocket, and it is like I am stuck between a

rock and a hard place. Do I spend the little money we have and try

and drive to the doctor all the time and live, BUT maybe lose what we

have (My fiance is the only one who works with me being ill and all)

like our home and cars, or tough it out and enjoy what we do have

while being ill. It is hard, but I keep fighting

>

> Born to a mother and father in Buffalo NY 1976

> Little baby boy

> Only Child

> Only Child with PSC...........................

>

> I miss the days of hanging out with my family and grandparents.

> Riding my bike for fun or going for walks at night

> I loved the beach, sand and water, as it transforms everytime the

> water comes in.

> I miss being a 5 year old in school again, learning

> I miss the mall, working and owning my own place.

> And at about 23yo.......................................

> PSC enters my life through UC. How painful it was. What I was

growing

> up to be. 60lbs Heavier from steroids, asthma, and more.

> WHat did I do Lord, why do I deserve this?

>

> Now at 32 I have a beautiful little girl.

> Born to mother and father (of PSC) 2003.

> Only Child

> Only child with a father with PSC.

>

> The days I will miss. Weddings, grandchildren, colledge, etc.

> Sweety, I apologize that I will not be there for you if I were to

> die. I AM SORRY...................

>

> I am SO SCARED OF DYING!!! I want to see my daughter grow up,

finish

> school, colledge, get married, and have a grandchild. I feel like

an

> outer shell and my brain is navigating my body. I can't stand to

look

> at the scaring from gaining weight. I have the hair loss that is

> really putting me down as well.

>

> I turn 35. And then I die. I am laid out for all those to see me.

Not

> the real me but a shell of me. A shell of meds has deformed my body

> to look as someone else. I leave my body to see what the other side

> is like. It is different. Quiet. I can't see any of my family

> anymore. THIS IS WHAT I WAS SCARED OF!!!!! Now it is quiet. I sit

> thinking about my wife and daughter. I wish I could have done more

or

> had someone done more to help. How will my little girl grow up to

be?

> Will she stay away from drugs? I WILL NEVER KNOW...... I have been

> overcome by PSC and I have faced the end.

>

> God Bless all of you who are fighting and keep fighting. We will

have

> a cure one day

>

May 25, 2008