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What Does The Future Hold?

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#1 radiostatic102



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Posted 18 October 2011 - 04:25 PM


I am really frustrated. I am in limbo. I'm 1 month on Xyrem and other meds. I went on LOA back in April but I had to resign at the end of August or they would have fired me anyway. I found out I had Narcolepsy the day before I resigned. I waited too long before I went to my Dr. for help. I really regret that.

I submitted a resignation to my work, but they show me in my paperwork as terminated. Does that mean I was fired? Even though I resigned? I guess I should call them.

There's no way, right now, that I could get a normal job, even a part time job. That may change with time.
But I'd have to explain my absence from work. Then I'd have to say I have narcolepsy. Which doesn't really help me at all. They can say I'm not qualified or some other BS. The way this world works, I really feel like I have no help at all.

Can I work from home? My wife told me about Workforce America. Do I have to be on SSD to qualify?

Aren't I disabled just having narcolepsy?

Or do I have to be declared disabled?

I'm just locked in my house and I'm going crazy with all these questions. I can't even go to the grocery store without an incident. How could I even think about getting a job at a place of business? I barely go anywhere anymore. What the heck is going to happen to me?

My parents and my wife are expecting me to do things I just can't do. Do I have to crack my head open on the pavement from a bad fall just to prove it?

Like I said, I'm frustrated. This wait and see game is not fun at all.

#2 keean



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Posted 18 October 2011 - 05:31 PM

So the meds are not working then? How much Xyrem do you take? I read a lot about Xyrem in the last couple days and also talked to a nurse at the SDS pharmacy. You need to be above a certain level for it to work otherwise it's stimulating and will keep you up. It's an oddity with GHB. Maybe your doctor needs to raise the dose for you? I'm sorry about your job. I know just how you feel I have such difficulty keeping up with everything. I'm not able to work, though I wish I were. I don't know anything about Workforce America, the website looks like it's just a workforce training provider, not sure how that would help you?

#3 severianthegreat



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Posted 26 October 2011 - 12:20 AM

I'm sorry to hear that you're in such a tough spot. I think a lot of us have been in similar situations and with cataplexy it makes handling stress that much worse.

Meds: Are you taking Provigil or a stimulant? A lot of us can't make it through the day without something (I'm a 400mg Provigil guy).

Job: Narcolepsy is protected by the ADA and updates to the bill several years ago give it a lot more force. Basically, you can't be disqualified for or fired from a job if you need a 'reasonable accommodation'. A reasonable accommodation is one that doesn't materially change the nature, metrics, demands, or requirements of a job. Unless you have an 'in' with a smaller company, you generally have a much better chance at a larger one, because the ADA sees them as more able to accommodate employees and because they often have a larger diversity of roles. You can't require them to make a custom job for you, only to make minor modifications to existing ones. And the ADA doesn't protect employees who don't perform - ie a reasonable accommodation isn't one that allows you to have low job performance or even reduced job metrics. Keep in mind I'm not a lawyer, I'm telling you what I found when I got my reasonable accommodation from my employer (a very large company).
Also, when you go for an interview, you're not required to tell them you have narcolepsy and need a reasonable accommodation right away. It's sometimes safer to wait until you have a job offer from the employer before bringing it up (though you really do need to bring it up then). This is another place where larger employers are often better as the job offer usually comes from a recruiter instead of the hiring manager. Some say it's dishonest to do this, but that's crap - behavioral studies on interviews show that many interviewers base their hiring decisions on how they 'feel' about an applicant and not how qualified they are.

Support: It takes a lot of people a while accept a disease like narcolepsy. You need someone to talk to, even if it's a free therapist or group therapy, etc. Narcolepsy often means isolation - do what you can to diminish that.

Hang in there and try to do one thing at a time!