Posted by gary g on February 19, 1999 at 14:00:48:
In Reply to: HOW do you hold on to your job? posted by Jackie M. on February 18, 1999 at 20:02:46:
NOT addressed to any individual - the subject posting just raised this subject - the following thoughts are VERY GENERAL, felt like sharing them
well - you'll probably HATE this but......
maybe keeping a particular job or career isn't all that high on the list of priorities - it isn't on mine anymore (damned good thing too)
at least we're not threatened with near-certain death at a young age - I'd rather have CH and no job, than a great job with benefits and terminal cancer !!!!!!!!
work the disability angle - use the system - demand to have treatment activities addressed the same way as a wheelchair would be
important to remember:
no law, ESPECIALLY civil rights type laws can EVER insure someone else will do the right thing - they only give us legal standing to fight back when they won't
alternatives, alternatives, alternatives - we need to be VERY flexible and VERY inventive, and as of yet there is no answer - al lot of us are trying in our own ways to find one, but it isn't here today
you'll find most longterm clusterheads end up self-employed - we just DON'T fit the "jobholder" qualification, and the "system" doesn't help us much (we're a classic "orphan" disease - by no means the only one either)
CH DOESN'T FIT the standard procedures & assumptions of life, helathcare and conventional behavior in western society - this may well be an "accept it, deal with it and move on" situation - sorta relates to the positive thinking spiritual values component -
if o2 doesn't work, makes it tough
if it does work and isn't allowed at place of employment - F' em, you don't want to work there anyway
this is just my opinion and I know it may sound overly hardass, but hey folks - where's the guarantee on our birth certificates ? mine doesn't have one; first 14 years of working life and CH I was in a business my family owned - was big enough to "carry" me when CH was bad -lots of leeway, did my thing when I could, no prob when I couldn't; then that biz shut down;
last 14 years - different story, worked at a dozen different things - now fully accepting that what work I get, I have to provide myself and my economic situation is WAY down - a life challenge - everybody's got one, this is mine
day at a time, day at a time
sincerely wish you all the best of luck, but sometimes we have to make our own luck........