Freshly diagnosed

[Guest guest]

Hello All, It all started with really high liver levels on a blood test I had done in July 2007, so that was followed by a liver biopsy. The sample was divided into two and sent to San Francisco and the other part was looked kept by Sutter, both places came up with the PSC diagnosis. I now have new health care, so my dr. did an MRI, he told me that it was conclusive with my diagnosis. I am having a hard time with this, I am in pain all the time, as I may have stated in another email, I have Celiac disease as well, have had Celiac for 9 years. I am tired all the time, I am trying to take care of myself, I also had a gastric bypass 3 years ago, so I have a lot to contend with healthwise, and I am starting to wonder why I am working. I had asked this group what they thought of permanent disability, the reason I am thinking about this is that I am so stressed out all the time,

and in pain from one of my ailments at all times, even when I try my hardest to be positive. The other issue is that I am scared to death, literally scared of death, I don't feel like my chances are very good, because I have so many strikes against me. I am sad and wondering how long after diagnosis it took some of you to be ok, you know, mentally...... I know I am going on and on, but who else can I turn to that really understands? God Bless brandi, 30 PSC diagnosed 2008

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[Guest guest]

Hi

>

> The other issue is that I am scared to death, literally scared of

death, I don't feel like my chances are very good, because I have so

many strikes against me. I am sad and wondering how long after

diagnosis it took some of you to be ok, you know, mentally......

>

I feel for you. I'm not sure how long it took me to get accustomed to

my situation before I started feeling better. Perhaps a year to one

and a half years following diagnosis of the PSC. I think the biggest

mistake I made was reading too much literature that was outdated.

Most, if not all, of it sends out a gloom and doom message.

I think this online format was helpful in giving me insight as to what

other people are experiencing. It certainly helped put things in

perspective for me. Although I'm not even close to being considered

for a transplant (and hopefully may never), the thought of one

terrified me and yet there are people in this forum that have

successfully had not just one but two or even three transplants. Of

course it also means that the literature is wrong in suggesting that

PSC is cured by way of transplant but I digress.

When I started feeling more emotionally stable, I made a point of

doing things and challenging myself in ways that would let me know how

I was doing physically. There's a lot to be said for physical

activity being an indicator of our emotional stability. So I learned

to scuba dive 2 years ago and last year I cycled about 500 miles in a

fundraiser for kids with cancer. And still there are days where I have

to admit, I simply feel wasted and just want to sleep or others where

the itching is driving me nuts. But so long as the good days outweigh

the bad, I figure things are going well and overall, I feel good.

On another note, one time at the Y, I overheard a fellow say to one of

his buddies who was lamenting about his next birthday, " the only bad

birthday is the one you don't make. " And I thought how true is that. I

know it's not always easy to put on a smiley face but in the face of

adversity we need to make the effort no matter how difficult it seems.

We also need to remind ourselves of the successes we have every day

and try to learn from the failures. And of course it's so important to

be able to laugh -- both much and often.