supercat

What do you do for a living?

158 posts in this topic

I'm the web guy for the Narcolepsy Network. My goal is to get every narcoleptic on God's green earth sharing the love on this very forum. What can you do to help?

friend.jpg

Say, while I have your attention, have you entered the contest to win

Penelope Przekop's book "Aberrations". How many great novels have YOU read were the main character is narcoleptic? Enter the contest, and win a personally signed first edition!

Click here for details

Sorry if it seems like I got things off topic, but I really didn't if you think about it. I'm Stu. I'm your friendly, neighborhood web guy. It is my life. It's what I do.

(okay...we can't be serious ALL the time, right???)

Now...tell us what you do for a living :)

love & prayers

-Stu

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I have currently applied for SSD and been denied twice.I am also going to ITT on line for crimnal justice.I should be recieving my highway patrol package pretty soon.

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I am a forty year old, high school English teacher. Since something had been massively "wrong" since the fall of 2001, I asked to go to part-time status for the 2007-2008 school year. Just before the year started, I learned that the "problem" was narcolepsy, so I look pretty smart for going to part-time. The courses I taught last year were a terrible fit for me (as a person and a narcoleptic), but this year, I continue my part-time employment and am working in a great environment.

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For 18 years I was a medical assistant got "burned out" and started working in the school where my kids go. I was a secretary and classroom aid for about two years. I learned how to drive a bus and finally found the job for me and the pay was waaaay better than the medical field so I took a job as a school bus driver. I've been driving a bus for about 5 years. After 10 years of being sleepy I was finally tested. I was dx'd with N. Driving a bus requires random drug testing and I was prescribed Adderall and of course that shows up in the urine so when I told the MRO why I take it all hell broke loose. I went through four months of having my medical records reviewed, being told that I have to see a Dr. my employer chose (to either confirm or dispell the diagnosis) and finally loosing my job. I was offered a job in the middle school and now I'm the hall monitor. I like it o.k. but I lost $9.00 an hour because the law states that they can put me into any job that has an opening and I get paid what that job pays, yep even if it is less pay!! I could've been let go.(I made over $20.00 an hour when I drove)! I loved my job and miss is terribly. It will be a year on November 1st since I've driven a bus. Not sure hall monitoring is my niche but it's a start. I'm happy to be employed and actually like working with the kids. I do get sleepy and have yet to brave the nap time at work, I fear they will catch me and use that to get rid of me. I'll wait for any opening in the district that I'm qualified for and maybe my niche I will find. Thanks for listening.

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I don't do anything. I used to be a concert lighting designer and engineer, I was wonderful at that, but once I quit the "drugs" part of my Rock n Roll life style, I have not been able to function properly. LOL. Who knew street drugs actually had benefits! (I'm joking of course! don't try this at home kids!)That was 8 years ago... I am on disability right now but I am hoping to find something that I can do at home to make a decent amount of money. $623 a month doesn't go far... I have tried college three different times and cant make it through even part time, Does anyone have any ideas for me? I'm totally stuck!

You do do something. You cope with your N everyday without drugs. That takes a lot of doing. You have kept trying your hand at college therefore have tried to get back to work. I am on disabilities like you and have learned to accept that I am on this until (and it will happen) there is a cure or mediaction that allows me to function without the dreaded side effects. I used to be a qualified beauty therapist, it took three years of full time college to pass my exams and several courses throughout the years to keep up to date. Like you I was told that I was good at my job and loved it. But now I concentrate on each day as it comes. You didn't ask for N it is a small part of you. It stops us from working but there is more to life than work. Work isn't who you are or defines you. It is how you live your waking hours that is important. I used to get mad at people who thought that I was a 'lady of leisure' bumming off my partner. This made me stressed and in turn made my N worse. If they won the lottery they would give up work. I used to value myself by how clean the house was, how much gardening I did, how I decorated every year how many hours I worked. I think we put too much emphaise on what we do and how that makes us fit into todays society. N doesnt rule me but I except my life has changed because of it and I deal with each day as it comes. I say it is my job. People have bad days at work, thats my bad day in bed all day. People at work get evenings and weekends off, that's a day when I can leave the house.

I keep in contact with friends over the phone rather than going out on an evening. Money is a hard one as when we haven't got it life is so much harder. I know money makes the world go around but you can't put a price on your health and you are doing the best for your health. My last two jobs have made my symptoms so much worse as you push yourself to the limit then your body can't stand it any longer and it breaks down. As this has happened twice to me now and the symptoms of my N & C haven't eased from giving up the jobs it would be impossible for me to do any kind of work. Don't put yourself down.

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too exhuasted,

I thought that was beautifully said. I teach high school and moved to part-time employment before I had my diagnosis. While my meds make my life more manageable, they do not allow me to "do what I want." At the same time I honestly believe that my life is richer now because I have had to prioritize my activities. I can only put energy into the handful of things that are the most important to me. Marcianna, I wish I had some brilliant insight for you, but I do not. Do treat yourself kindly. You have done nothing wrong, and your health IS too important to force yourself into situations that will only serve to increase your stress level. I encourage you to do what you love. Hopefully, some insightful individual will realize that you deserve to get paid for this thing that you love.

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I have several degrees, worked a professional career. Now, a stay home mom that can barely keep the house clean and can never go back to work because of N. I can't beat it (the N). Doctor said that I'm disabled but I won't allow it to be written in my record. He's a great guy. But I do know it's true and I would be happy with the stay at home mom title if only I could excel at it. It's been the most rewarding job, which makes it so difficult to accept the fact that I really fail at it miserably every * day. I should have allowed my doctor to write up my disability, though, because now I have not worked enough recent quarters (per Social Security) to get disability, and I know that I will never be able to again.

I barely made it through school. I was prioritizing like Mike M said, but I didn't know it. I'd take easy classes at the same time as hard classes to level out my gpa. There were times that I would just have to accept a "C". Somehow, I made it through while working.

Once I did start my career, there were times that I would "disappear" for 15 -20 minutes. I could usually be found in a bathroom stall sitting on a toilet - not for it's purpose, but as a seat to sit on while I rested my head on a stall wall or toilet paper dispenser. During lunch hour I would close my door and use a three ring binder as a pillow and crawl under my desk and pray that I would be "up and at 'em" within an hour. Alarm clock? Forget it. I may or may not respond.

If you can't go to school even part time, then you just can't. I know that there is no way that I could take a class for anything. I took a stretching class (no homework no reading) and still could not make it to class all the time. I had a yoga instructor tell me that if I could not come on a more regular basis than I should not come back at all. Can you imagine? If you take college classes, then you are trying to better your position in life, but you hopefully do not look at it as trying better yourself as a person. Degrees usually do help you earn more money and also to get what is usually considered a better job. But, there are some good jobs out there that don't require degrees; some of which can be done from home. If your N is really bad and if you don't have kids -my personal pov, kids have made my life great, but my N affects their lives in a terrible way - then don't have kids. You don't have to be as worried about providing for a family or about having a better paying job. Your responsibilities are much lower. It really sucks living my life this way. It really sucks seeing my kids cry for me to stay awake. We can't even get them a dog because I know I will end up having to care for it, which means that it would starve in the back yard with no exercise. I can hardly keep my old cat's litter box clean. If you are at a point in your life where you realize that N affects your life to the point of disability, then you may have to accept this and just do the best with what you now have. I find myself thinking of "I used to.." or "if only I could just get the energy this one time.." and I'm tired of telling myself that I can't allow myself to think these things. It's only natural for a human being to want to better their lives, but at this point, what does make your life better? If you are able to go to school, graduate, get a good paying job, what then? Will you be so exhausted that you hate your life? Work around it now and be totally honest with yourself. What can you live with? Can you live with making less than you would if you earn a degree? If so, you may find yourself happier in life and better able to cope with N. This alone is worth alot.

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I have several degrees, worked a professional career. Now, a stay home mom that can barely keep the house clean and can never go back to work because of N. I can't beat it (the N). Doctor said that I'm disabled but I won't allow it to be written in my record. He's a great guy. But I do know it's true and I would be happy with the stay at home mom title if only I could excel at it. It's been the most rewarding job, which makes it so difficult to accept the fact that I really fail at it miserably every * day. I should have allowed my doctor to write up my disability, though, because now I have not worked enough recent quarters (per Social Security) to get disability, and I know that I will never be able to again.

I barely made it through school. I was prioritizing like Mike M said, but I didn't know it. I'd take easy classes at the same time as hard classes to level out my gpa. There were times that I would just have to accept a "C". Somehow, I made it through while working.

Once I did start my career, there were times that I would "disappear" for 15 -20 minutes. I could usually be found in a bathroom stall sitting on a toilet - not for it's purpose, but as a seat to sit on while I rested my head on a stall wall or toilet paper dispenser. During lunch hour I would close my door and use a three ring binder as a pillow and crawl under my desk and pray that I would be "up and at 'em" within an hour. Alarm clock? Forget it. I may or may not respond.

If you can't go to school even part time, then you just can't. I know that there is no way that I could take a class for anything. I took a stretching class (no homework no reading) and still could not make it to class all the time. I had a yoga instructor tell me that if I could not come on a more regular basis than I should not come back at all. Can you imagine? If you take college classes, then you are trying to better your position in life, but you hopefully do not look at it as trying better yourself as a person. Degrees usually do help you earn more money and also to get what is usually considered a better job. But, there are some good jobs out there that don't require degrees; some of which can be done from home. If your N is really bad and if you don't have kids -my personal pov, kids have made my life great, but my N affects their lives in a terrible way - then don't have kids. You don't have to be as worried about providing for a family or about having a better paying job. Your responsibilities are much lower. It really sucks living my life this way. It really sucks seeing my kids cry for me to stay awake. We can't even get them a dog because I know I will end up having to care for it, which means that it would starve in the back yard with no exercise. I can hardly keep my old cat's litter box clean. If you are at a point in your life where you realize that N affects your life to the point of disability, then you may have to accept this and just do the best with what you now have. I find myself thinking of "I used to.." or "if only I could just get the energy this one time.." and I'm tired of telling myself that I can't allow myself to think these things. It's only natural for a human being to want to better their lives, but at this point, what does make your life better? If you are able to go to school, graduate, get a good paying job, what then? Will you be so exhausted that you hate your life? Work around it now and be totally honest with yourself. What can you live with? Can you live with making less than you would if you earn a degree? If so, you may find yourself happier in life and better able to cope with N. This alone is worth alot.

Your description of taking courses is very familiar to me. I'm struggling to complete my degree. My only advice is to not settle for medication that doesn't really help. Keep looking! :)

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Hi everyone, I am a Solar, Geothermal and Radiant heat designer and installer. I work for myself wich is the only reason I am still employed. I support my wife/stay at home mother of two girls (2 and 4yo). I love what I do but am so scared I am going to lose everything I have worked for. I have spent the last 6 years of my life (Im 32) devoted to doing the best job I could possibly do. I absorbed all the information I could get from any contractor I came across. I went to every factory equipment traing school that was offered. I researched anything I could think of that would help me in my field (Radiant Heat). After all this hard work I actually feel like "I have made it". My current clients are well off and building 4500SqFt houses or larger and they have asked for me by name. I havent advertised in over two years and am known through my reputation via word of mouth. 4 monthes ago I was diagnosed with Narcolepsy with cataplexy. As if that wasent enough, I have developed insomnia which last for up to 4 days at a time. when I do fall asleep I can easily sleep for 48 to 54 hours (probably longer if I didnt have to pee). I am doing everything I can to hold my buisness and my sanity together. When I go through "up" periods I work at night (New construction allows this) when all the other contractors are gone so I can focus better, and work untill the contractors start to show up again, then I do the running around this feild requires like going to supply houses and engineers offices. Then I go home and make the many endless phone calls that seem to need to be made every day. when Im in my office I either work on paperwork for the job I am on, or I do some form of studying and research on the internet. Than as the sun goes down I prep to start all over.

This is such a crappy way to live. I dont get any time with my wife and kids. Im so scared If I change my routine I will fall behind and my reputation and carrear will both suffer. I wish I could find a position with some company and have a desk job but where I live that is highly improbable. The stress of completely supporting my family and continually working is immense. With my condition rapidly getting worse....I am scared.

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I hope you find something that helps. It's so crappy to feel this way.

thanks, and sorry to all for the multiple posts, Im really not sure how that happened. I hope it wasnt me but at this point..huh who knows?

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I work as an insurance verification specialist for a sleep disorders company. I also work on getting authorizations for sleep studies for some patients so I've seen some pretty crap-tastic hoops pts have to jump through just to get authorized. Luckily through my work I knew a little bit about N. and the tests to diagnose it before I actually went through it all. There are drawbacks-for example I had to go to an insurance conference recently that was several hours long, boring, and in a dimly lit (for powerpoint presentation) room. Even with my meds I had a horrible time not falling asleep! When my boss asked me how it went I just told her boring insurance conferences and Narcoleptics do not mix. She laughed so at least she had a sense of humor about it...lol....said she hadn't thought of it that way. That's kind of the way of things I'm finding out...people don't really think about (or care sometimes) about what struggles PWN go through. Insurance companies can really suck (no news to most of you I know.) Looking forward to meeting my fellow PWN.....

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I'm a research scientist. I used to do N research, but moved on so I could finish my Bachelor's. Right now I'm doing pubery, ovary, Rhett's syndrome research and I hope to get into grad school one day. I'm pretty happy working on anything neuroscience.

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I work for an auction company on the paper pushing side! Not very exciting, but I do enjoy it! ;)

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been there.. got the t shirt. and thats all thats left.

sperated then divorced after 12 years with two kids

diagnosed with sleep apnea.. then narcolepsy..over the course of a year.

laid off in january 2008, got another job in June 2008. Laid off from there in August.

I own no property other than a bed, tv (no cable or internet or phone) and couches that my parents owned when i was 5 years old

so yeah, went from making 100K a year to unemployment, which will run out soon.

I have tried every drug that my sleep doc offers.. so he dont know what to do and neither do i. I just know i cant afford to buy food for my kids to come visit me... or even christmas presents.

but Im still breathing at least.. oh wait.. that's right i don't at night..dang sleep apnea

Id say if you have something going like a business, and you know its a time bomb.. then step back, find a partner, or someone who could work for you, or sell the business.. which of course is hard when its only you.... You cant teach someone to be you, however i have tried to give narcolepsy to my ex wife. Every time i see her i try and shake a little off on her..

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I am a full time student going to classes Mon-Thurs. I also work full time (30hours/week) as a valet attendant (for 10yrs.). I work Friday 3am-1pm Sat. 2am-12pm and Sun. 2am-12am. I sleep on breaks between classes and on breaks while at work!

I think the Provigil is helping.....at least sometimes. I began taking it late in August of this year. I take 200mg and sometimes will only take a half a pill. I have all of the N symptoms other than the feeling of being paralyzed when you awaken.

I have been on Xmas vacation for about two weeks, and do not go back to school until Jan. During these two weeks I have only taken my Provigil once, and have only fallen asleep once at a time when I shouldn't have. I find it extremely easy to stay awake at work because as a valet attendant I am always walking/running. I have NEVER fallen asleep while working. At school, however, I can easily fall asleep becasue I am sitting for more than five minutes! I don't want to have to raise the amount of milligrams I take, and, in my imagination, by not taking Provigil when I am not at school maybe I will lose the "tolerance" I have for Prov. Does anyone think that makes sense!!??

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I am a courier, PT early am hours when I am at my best.

Hey, I'm a courier too!!! Part time also.

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I'm an Emt . I work on an ambulance. Currently 6 weeks away from being a Paramedic...

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I started out in administration, then moved into IT doing database development. I was the only girl in most of the places I worked, but I liked working with the guys in my teams. After a while, I tried to get out of IT, but got a bit pigeon-holed and ended up in IT administration.

I got tired of all the thinking all the time, so I did my course/s to become a personal trainer, which I now love doing. It's not work at all and I can pick my hours for the most part. I don't have the energy a lot of the time to do as much as I'd like to, as fast as I'd like to, to be able to build my business, but it's a trade off. I'm much happier even with "where am I going to get the money for..." is in the back of my mind a lot.

Being out and about, getting physical and eating better helps my N symptoms. I feel much better than I did in a sedentary job staring at a computer screen and having to go hide in my car for 20-30 minutes to sleep.

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Hi, I am new here, and haven't been officially diagnosed with this sleep disorder, however, I have a bunch of other ones, (Obstructive Sleep Apnea, Periodic Limb Movement Disorder, Restless Legs Disorder) and according to family genes, and my symptoms from before I started to self-medicate, and before the anti-depressants, I think I may have cataplexy and a few other things that I have forgotten the names of.

I have a BS in Horticulture, and worked in research and development for many years, until I too was 'downsized'. I had been doing fairly well until then, making a great salary, doing some international travel, but struggling to stay awake, to remember things, and to get to work on time. Getting there on time or early is much more important than working through every single lunch hour and break, and even more important than staying late, but not by a lot!

I have done several things after that, however, with the rising stress levels, not only from not working and having the judgements of family stabbing out from their concerned eyes, but from other things as well. I found that working for myself was a tremendous effort, I created so much work for myself, and I couldn't remember things from one day to the next... however, that was so much better than working for others, in jobs so unsuited to me and my ADD, OSA, RLS, PLMD, depression, The Vapors, etc... with multitasking, poor training, and, whah whah whah... that I bombed bigtime for the first time in my life. the second job was even worse since it was for a relative. and I had my old beginners luck, but then everything fell out my ears and onto the floors.. and I made mistakes a kindergartener wouldn't make... too tired, too stressed, too... what?

Anyway, I got my 4 year degree by working 2 to three part time jobs and taking 8 years, and have fallen asleep in fields while taking research notes for my favorite grad student. Being a night person, I slept through most of my early classes, and could nap on the head of a pin, as long as those dancing angels would move over a bit.

I used to have weird dreams, but I haven't had a dream in years, unless while taking a nap, sometimes, but when young I would see strange things as I was falling asleep, and upon waking I would find myself paralysed in bed, unable to move, unable to scream... and eventually, after having a heck of a time convincing my PCP Doc to test me, I found I had severe obstructive sleep apnea, and haven't been recorded in rem sleep in any of three polysoms...

BTW haven't been tested for narcolepsy - since I am taking effexor, and of course - this is a rare disorder... so why would I think I had it... :angry: and with every diagnosis, every prescription, I think I feel better at first, and notice an improvement, but then I still am not as 'better' as I hear described. and then the Docs start looking at me funny.. dontcha hate that look? like, well, we've done all we know how/ want to/ can... so it must be all in your head... or you are a whiner? Anyway, THANKS for being here as I start to learn somthing about what may be another little lovely in my brain. Your words will be the ones I count on, the ones I go to and the ones I will remember. Or at least the ones I return to when I forget! :)

thanks again,

Mags

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During the fiscal year, I'm doing theatre minionships, I mean internships, working on becoming a professional theatre director.

During the summers and sometimes for temp work, I do computer science/programming and web site design. I specialize in information retrieval/search engine technology and data mining/database stuff in computers, although generally I am employed as a freelance web designer.

... oh dear. :-\

drago

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Why don't we join our forces?

I mean really!

We have so many skills and talents.

OK sure we have N and all ..

So we have to model . . devise a strategy plan - that works flawlessly , so if someone can't do something for 2 weeks - it doesn't matter someone else (or two or three other ppl) can step in.

A sort of decentralise system, where no specific single individual is extremely important and vital for the success of the venture, but the organism work as a whole.

An organic system. But very effective. Very efficient.

Maybe when we have enough numbers, we could outperform other organisations.

It is very difficult - nearly impossible - for a N individual to succeed alone in life.

But we don't know yet if the same case is true - if we (very) efficiently program a structure of collaboration.

And given our thirst to succeed, we would devote anytime to make this work - when energy & time is made available.

It's like donating 1 cent. If lots of people do it. We end up with loads. It doesn't matter how much you give .. but how often

It doesn't matter if some gives 1 hour of their time a week, or a month .. or if suddenly a second person - devotes 26 hours of continuous input and then burns and crashes out.

What is important is that no person should be made feel guilty. Since "guilt" and want for recognition is a default for N ppl anyway. So in this system - rewards should NOT be made proportional to input.

Does this make sense?

What would the venture comprise of? Business. I don't know what exactly.

We have experts here. And we have people who are hardworking. It doesn't matter if some have degrees and others haven't completed any training. Because everyone has something valuable to add with their presence.

I know this is still very vague ... and in the air.

What we need is discipline and selflessness. Give up the recognition. The system should be like - if someone added a lot - noone knows. If someone is sick or having personal troubles and have disappeared for a while - noone knows.

But the system itself is strong, flexible, capable, creative, intelligent, intuitive, powerful and indestructible.

People have created such depersonalised systems in the past. But the problem with those - is that they were evil. A "corporation" is nothing but a greedy evil souless monster.

So one needs to program a similar system, depersonalised but benevolent. It cares a lot about survival, but not at the cost of destruction. It's a Terminator - but the "good" one !! - instead of the baddie.

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I'm a writer. Last October 2008, after a really unhappy stint working as a medical reporter for one of the major news services, I was burned out and ready to quit the profession when I got an offer out of the blue to write medical research proposals for doctors and scientists in the military and Department of Defense.

Except for some of my co-workers who are overly sensitive, I love it. I work with really smart people and don't have to worry about understanding the finer points of the medicine or science I'm writing about. I can concentrate (for a couple of hours a day, anyway) on producing well-written and edited material. It's rare to be able to do something that is simultaneously selfish and for the greater good. I also get to write the occasional medical paper or journal article.

Over the years I've been lucky to have many more good bosses than bad, but the man I work for now, is truly remarkable and I couldn't be luckier than to have the work situation I do. When he offered me the job he said he expected me to always be honest with him. He hasn't disappointed.

After twenty years of living with an abusive woman who made me believe my fatigue and exhaustion were nothing more than personal weakness, I've found peace and contentment. My kids are growing up to be what I think will be good adults, I have a new wife who is truly special and makes me believe that happiness is possible, and a job I'm good at and enjoy. And, to top it off, I have two physician assistants acting as my primary care providers with whom I share a mutual trust. One is my family practitioner and the other is my sleep specialist. Never did I think my life would be anything more than a struggle to think clearly.

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