Hello Tammy V

[Guest guest]

Hi Tammy

Welcome to the group

I have only just renewed my contact with the group after being

diagnosed with PSC in Dec 04. At the time I could have (and

probably did) written your message. Its a confusing time. I am 37

and have been on a roller coaster of emotions since - mostly good

now. To start with I researched everything I could on PSC and

scared the heck out of myself. Remember not everything you read on

the internet is correct so this group is a great place to ask

anything.

I was diagnosed by chance as well - gp was trying to find reason for

a persistent headache and as a last resort did a liver function

test. There are a lot more knowledgable people here than I but I

had to go through a grieving process. After that I had to get my

head around the power of positive thinking. For quite a while all I

could think was negative 'woe is me' thoughts. I sought out the

help of a counsellor to help me deal with my emotions - its normal

to be up and down. As time went by I learnt to trust my doctors and

my doctors educated me on what I needed to look out for, when to go

to an emergency room, what to ask for, what treatment to insist on

etc.

I'm in Australia so I can't help with contacts etc but I just wanted

to reach out to you and give you a hug and let you know you are not

alone here. I'm sure you will receive lots of help here.

Take Care

37yo, married mum of 2 girls 12 & 8, Australia psc dec04

>

> Hello Everyone,

> I am totally new here.

> I am a 39 year old female in NJ, just diagnosed with PSC.

> Tammy V.

>

[Guest guest]

Thank you for your response and a hug right back to you.

I am trying to be as positive as possible but I think I should also

seek some therapy...

Thanks again for your response.

How are you doing now?

How long do they suspect you have had PSC ? Prior to your diagnosis?

Please keep in touch.

Tammy V

> >

> > Hello Everyone,

> > I am totally new here.

> > I am a 39 year old female in NJ, just diagnosed with PSC.

> > Tammy V.

> >

>

[Guest guest]

Hi Tammy

I'm doing ok - I know in the near future I will need a transplant

but I don't worry anymore. I had no idea I had any liver problems -

it took 12 months once the abnormal LFT was picked up in dec03. It

doesn't matter, now, to me, when it started. It did for quite a long

while and I wanted to blame someone for missing something. Then I

realised for me worrying/stress made me sicker so now I try not to

worry about things I can't change - but its normal to go through the

roller coaster of emotions - fear, anger, distress, sadness,

resentfulness etc. There are still times I go through that. I find

it difficult to comprehend all the medical side of the disease so

have learnt to listen to my body and if something is not right I see

my GP or ring my specialist - not all symptoms present at same time

in same order or severity. My doctors understand and are quite

supportive. I have had to change GP's on occasions - one point

blank refused to get a blood test when I was sick - having a team

that is supportive and trustworthy is important. All my doctors are

really interested in treating a rarely seen disease so look after me

well.

Talking helps and you have found the right place here. It would be

wonderful if you are able to get to the conference. The feedback I

have seen here is all so positive and beneficial for those that go.

Take care

>

> Thank you for your response and a hug right back to you.

> I am trying to be as positive as possible but I think I should

also

> seek some therapy...

> Thanks again for your response.

> How are you doing now?

> How long do they suspect you have had PSC ? Prior to your

diagnosis?

> Please keep in touch.

> Tammy V