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flutterbye_xo

Gaining Respect Back

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Ok so I'm narcoleptic. Now how do I convince my colleagues/peers and professors I really am reliable?

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Ok so I'm narcoleptic. Now how do I convince my colleagues/peers and professors I really am reliable?

keep doing what you normally do..

Did you tell them? If you did...ensure you get the same treatment/respect.... If you start having trouble...talk to your sleep specialist on what may help you at/with work.

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Ok so I'm narcoleptic. Now how do I convince my colleagues/peers and professors I really am reliable?

The only way of proving you are reliable is always doing your best. I do not discuss my narcolepsy with my employer and have struggled everyday with keeping up. If my employer were to find out I have this disabling condition, I would be canned because of the type of work I do. I was finally prescribed medication to help me get through the day much easier and it has been miraculous. I just can't wait to finally tell my employer...when I retire many years from now, that I am a narcoleptic. Are you medicated? Do you fall asleep at work?

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The only way of proving you are reliable is always doing your best. I do not discuss my narcolepsy with my employer and have struggled everyday with keeping up. If my employer were to find out I have this disabling condition, I would be canned because of the type of work I do. I was finally prescribed medication to help me get through the day much easier and it has been miraculous. I just can't wait to finally tell my employer...when I retire many years from now, that I am a narcoleptic. Are you medicated? Do you fall asleep at work?

I don't fall asleep at work because I'm usually standing. I'm a third year pharmacy student and I have long days (we take 18 hours every semester) then I spend nights studying. I've been falling asleep in class for I don't even know how long. I can feel some of my professors eyeing me all the time. Luckily I'm a book learner anyway and I record lectures. My peers and my professors will be my colleagues when I graduate. I haven't told anyone but a few people have intuitively guessed (we actually did study this disease in class). I feel like I can't go to any pharmacy because someone knows me everywhere. Anyway, yeah I'm taking Nuvigil during the day but I still fall asleep. I have a hard time driving from my rotation to school which is about an hour drive. I just have to be places on time. I'm thinking about telling my toxicology professor and asking her about Xyrem but I'm worried. You'd think a community of healthcare professionals would understand but I don't know. Even protected by law I may not get a job if people know.

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keep doing what you normally do..

Did you tell them? If you did...ensure you get the same treatment/respect.... If you start having trouble...talk to your sleep specialist on what may help you at/with work.

I've told a select few people and they have been nice to me and understanding. It's kinda like the last 10 years of my life suddenly makes sense. I don't want people to think I need a crutch and I don't want to be in danger of not getting a job when I graduate (everyone I'm around is in my field and will be my colleagues). I won't take a job I'm not capable of but I at least want the chance to work. I'm always thinking if I can just get more sleep or get homework done faster I'll be ok but it never happens and sleep takes over anyway. I still make due. I do have a specialist and he seems nice. He says I will be a better pharmacist because of this. I hope so.

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I'm thinking about telling my toxicology professor and asking her about Xyrem but I'm worried. You'd think a community of healthcare professionals would understand but I don't know. Even protected by law I may not get a job if people know.

If you can make the NN conference, this would be a good place to find out about Xyrem. I sat in a few of the sessions last year and it started sounding pretty good....too bad idiopathic hypersomnia doesn't get it. Maybe I need to get the doctor that said in a session last year that continuing EDS after a year of compliant CPAP usage is Narcolepsy Though I did briefly have the Narcolespy DX, but then Stanford said I don't have it...so now I don't.

(doc didn't care that the NIH article said only 88.5% of Narcolepsy with Cataplexy have no/low hypocretin and that it isn't major cause in other hypersomnias, including Narcolepsy without Cataplexy and Idiopathic Hypersomnia....its Stanford and that's all he needs.)

Think this year they're having a special Xyrem panel with people who are on Xyrem....

The Dreamer.

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