considerations

[Guest guest]

After a couple of months of fevers, nausea, and urq pain, I finally had an

ercp on 2.29.08. It was scheduled for noon and they insisted I be there

by 8:30, yet it was delayed and didn't begin till 4 pm. Needless to say

by the time I got home, 13 hours had passed.

Today was a particularly gruelling day at work and it is coming increasingly

clearer to me something has got to give. Job demands and stress demand

energy and mine is simply gone. So here I am watching quality of life

degrade after 14 years and complications mounting up such as anemia,

osteopenia. The company has productivities to maintain would simply

prefer I go away. So much for 32 years. Right now I feel I have very few

alternatives

with a chronic illness, yet not sick enough to receive a transplant, all the

while

dealing with physicians who couldn't begin to understand how I feel.

I was wondering if some of our more experienced members might share how

they coped and if/when they decided the illness had advanced enough to

consider disability.

Sorry for the long post

Phil

PSC/UC 94

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[Guest guest]

>

> I was wondering if some of our more experienced members might share how

> they coped and if/when they decided the illness had advanced enough to

> consider disability.

---------------

Personally, I applied for disability in 1996 after my primary care dr. talked me

into it! That

was before my PSC diagnosis; at that point I " just " had Crohn's, asthma, and

really severe

fibromyalgia. We know that I had the PSC well before that time, because of

surgical notes

about the obvious beaded appearance to the ducts, from when my gall bladder was

removed in 1994 (no one bothered to inform us at the time, though). The level

of

exhaustion was a really big factor for me in applying and, of course, we know

now that

was due to the PSC rather than the Crohns.

Before I applied, I was still struggling to work (I was an executive secretary)

but couldn't

manage more than about 5 hours a week. By the time I got to the office I was

already

wiped out for the day. I would work for an hour and go home and crash until the

next

morning.

My exhaustion level is still very restrictive and, as much as I would dearly

love to go back

to work, there's no way I could survive more than 2 days before I would be done

for. Since

the past year has put me back on my feet a bit, I tried volunteering at my

husband's office

but I've found that I must limit myself to 1 or 2 afternoons a week at the

absolute max.

My strength just isn't there, much as I want it to be.

It took nearly 2 years before I was actually awarded disability and it has been

a life-saver.

Take care,

Carolyn B. in SC