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In Trouble At Work And Need Your Advice!


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#1 KMitchell25

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Posted 25 September 2012 - 02:01 PM

Hello everyone!

I was diagnosed with narcolepsy almost 2 months ago, and I have still been struggling with Severe EDS on a daily basis. I will be starting Xyrem soon, but unfortunately even once that begins working and I'm hopefully able to function at a higher level during the day, it won't help my employment predicament as it is now.

Before being diagnosed I had called off work a few times due to being unable to drive and excessively tired- I didn't know I had N at the time- but I was just "sick" and couldn't get out of bed. Well, now we know why I have felt like this for so long- thank God! Due to 6 absences in the past 10 months I have been put on a Level 1 discipline with my employer. This means that if you call off again you are unable to transfer positions (something I really need because I work in a cubicle prison which makes me even more of a prisioner of my narcolepsy). It also means that I will no longer be eligible for Tuition Reimbursement, and also that any more absences will result in termination.

This morning my husband left for work very early- I had 4 alarms set. Didn't hear ANY of them. Not one! So I was having a major anxitey dream and woke up panicked- and then I looked at my clock and that's when the REAL WORLD panic kicked in- it was already 10 minutes past when I was supposed to be clocked in and at my desk. I called my boss and was out the door in 5 minutes. The scary thing is that I should not have been driving- usually I have over an hour to get moving and have my meds kick in- but I had to go to work so I had no choice. I know it's bad, but I have never had sleep attacks in conversations or while driving before- just when working or reading or watching tv or in any situation where I am not engaged enough.

So I get to work and go talk to my boss, explaining that this is something I could not control- She said that I would go on a Level 2 discipline- which means I am out $500 in tuition reimbursement, and I am unable to transfer positions. Also if I have one more incident within the next YEAR I will be fired. I'm not eligible for FMLA until the end of November- but shouldn't the ADA grant some rights in regards to accomodating a schedule that would allow for a allow me to work my full 8 hours without being punished for being late when it's due to Narcolepsy?

Exceptions have been made for other employees who do not have disabilities- i.e. a coworker left the other day (unscheduled- same as being late) to go to the hospital because of cramps- and was told that she got a "pass" that time. She told me she should have been placed on a level.

SO my boss says she can't imagine what I'm going through and she really feels bad and wants to do everything she can to help. Well, I know for a fact that "passes" have been granted for multiple people- and I don't understand why my issue is not qualified but menstural cramps are?? Both my boss and HR have known about by diagnosis from day one- and I gave my boss a letter from my doctor yesterday explaining that I may have issues with focus and performance until we get everything figured out- I have given her a pamphlet for education on Narcolepsy. They had told me that the nap policy won't apply to me because I have a disability where I need naps in the afternoon to make it through- so they KNOW I'm having this problem.

I don't know what to do. After all this my boss is waiting to hear from HR- she sent over the letter from my Doctor and also forwarded my email that has a request for accomodation to allow me to work later into the evening to get my full 8 hours without being reprimanded if my lateness is due to Narcolepsy...

WHAT SHOULD I DO?? I feel this is discrimination becuase others have been given "passes" but I am not. With this new diagnosis I am scared of the unknown already- and now add the fact that I may lose my job on top of that- and I'm a mess.

SORRY FOR THE LONG EMAIL!!! Please give me some advise here friends!



#2 Hank

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Posted 25 September 2012 - 04:47 PM

Hello everyone!

I was diagnosed with narcolepsy almost 2 months ago, and I have still been struggling with Severe EDS on a daily basis. I will be starting Xyrem soon, but unfortunately even once that begins working and I'm hopefully able to function at a higher level during the day, it won't help my employment predicament as it is now.

Before being diagnosed I had called off work a few times due to being unable to drive and excessively tired- I didn't know I had N at the time- but I was just "sick" and couldn't get out of bed. Well, now we know why I have felt like this for so long- thank God! Due to 6 absences in the past 10 months I have been put on a Level 1 discipline with my employer. This means that if you call off again you are unable to transfer positions (something I really need because I work in a cubicle prison which makes me even more of a prisioner of my narcolepsy). It also means that I will no longer be eligible for Tuition Reimbursement, and also that any more absences will result in termination.

This morning my husband left for work very early- I had 4 alarms set. Didn't hear ANY of them. Not one! So I was having a major anxitey dream and woke up panicked- and then I looked at my clock and that's when the REAL WORLD panic kicked in- it was already 10 minutes past when I was supposed to be clocked in and at my desk. I called my boss and was out the door in 5 minutes. The scary thing is that I should not have been driving- usually I have over an hour to get moving and have my meds kick in- but I had to go to work so I had no choice. I know it's bad, but I have never had sleep attacks in conversations or while driving before- just when working or reading or watching tv or in any situation where I am not engaged enough.

So I get to work and go talk to my boss, explaining that this is something I could not control- She said that I would go on a Level 2 discipline- which means I am out $500 in tuition reimbursement, and I am unable to transfer positions. Also if I have one more incident within the next YEAR I will be fired. I'm not eligible for FMLA until the end of November- but shouldn't the ADA grant some rights in regards to accomodating a schedule that would allow for a allow me to work my full 8 hours without being punished for being late when it's due to Narcolepsy?

Exceptions have been made for other employees who do not have disabilities- i.e. a coworker left the other day (unscheduled- same as being late) to go to the hospital because of cramps- and was told that she got a "pass" that time. She told me she should have been placed on a level.

SO my boss says she can't imagine what I'm going through and she really feels bad and wants to do everything she can to help. Well, I know for a fact that "passes" have been granted for multiple people- and I don't understand why my issue is not qualified but menstural cramps are?? Both my boss and HR have known about by diagnosis from day one- and I gave my boss a letter from my doctor yesterday explaining that I may have issues with focus and performance until we get everything figured out- I have given her a pamphlet for education on Narcolepsy. They had told me that the nap policy won't apply to me because I have a disability where I need naps in the afternoon to make it through- so they KNOW I'm having this problem.

I don't know what to do. After all this my boss is waiting to hear from HR- she sent over the letter from my Doctor and also forwarded my email that has a request for accomodation to allow me to work later into the evening to get my full 8 hours without being reprimanded if my lateness is due to Narcolepsy...

WHAT SHOULD I DO?? I feel this is discrimination becuase others have been given "passes" but I am not. With this new diagnosis I am scared of the unknown already- and now add the fact that I may lose my job on top of that- and I'm a mess.

SORRY FOR THE LONG EMAIL!!! Please give me some advise here friends!



Document everything. Time, date, details. If you were pregnant and were late for morning sickness, everyone would probably be understanding. If you have already asked for accommodation, you did the right thing.

You were not being irresponsible, you were being symptomatic. Are you eligible for short term disability? If so, that is an option.

I have kept a regular sleep/wake time for years. When I have to go off that, it is a red flag for problems for me. It will be in your best interest either way to make sure you have back-up when you are vulnerable to oversleeping. If you have someone who could assist you, like a neighbor, who could call you on those mornings when your husband leaves early. If you don't answer the phone, you could ask them to come over and check. Honestly, whatever it takes.

If you have sick time or vacation, you could consider using it one hour at a time when needed. I do think it is unnecessary for them to be so severe, but the reality is that is how they are. Your best bet is to document, request accommodation and do your best to prevent it from happening. You are in a very difficult position, no doubt.

They need to make some effort to accommodate you, but they do not have to. They may want you to just leave, so don't give them a reason. Yes, they are leaving themselves vulnerable to a lawsuit, but a lawsuit is not easy to initiate and it is expensive and stressful.

I would suggest an approach like this: look, I take this job and my performance seriously. I am adjusting to an illness for which I am now being treated. My late arrival bothers me greatly for 2 reasons: 1. I value punctuality and I want to be viewed as punctual 2. My health problem is impacting parts of my life that I value, like punctuality. While I respect you position about lateness, I would prefer that we address this as a health matter rather than a disciplinary matter. Because I take this seriously, I would like to discuss ways to overcome and accommodate this health problem, rather than discipline this health problem.

This is just a suggestion and may not fit your situation. Please feel free to disagree. I hope you will be treated respectfully.

Here are a few suggestions for alarm clocks from an article I had read (I cut and pasted, I did not write the following):
http://articles.lati...k-side-20120512
Math Alarm Clock: An Android app that plays music you've chosen to wake up to. That might sound a tad sleep-through-able for a hard-core zzz-ster, except that it plays and plays and plays the music until you come up with the right answer to a math problem. Only you know how long that might be. You can choose from four levels of difficulty, choose to torture yourself with more than one problem or choose to snooze awhile before you start. ($1.99 from wherever you can buy Android apps.)

The Sonic Bomb Alarm Clock: No pretense of civility here. You can set the volume for up to 113 decibels (13 more than a jackhammer), and it comes with an under-the-mattress bed shaker if you want a really rude awakening. This one sets off alarm bells for Dr. Clete Kushida, a professor of psychiatry and behavioral science at the Sleep Medicine Center at Stanford University: "If it wakes you up out of a deep sleep, you could be dazed and confused. You could fall out of bed. You could be a danger to yourself or others." (Various outlets, prices in the $20s and $30s.)

Clocky, Tocky, Flying Alarm clock: Your alarm is beeping at you. But there must be some mistake, because surely your head just barely touched the pillow. You mutter a few remarks to that effect and reach out to shut the blankety-blank thing up — but it's not there! Clocky has jumped off your nightstand and rolled away. Still beeping, naturally. In fact, it's not about to stop running and beeping, running and beeping, until you drag yourself out of bed and chase it down. Clocky has a sibling, Tocky, that uploads MP3s and has a microphone so you can personalize your morning greeting. (Various outlets; Clocky in the $30-$50 range; Tocky somewhat more.)

Oh — and if you'd rather have your alarm take to the air and shriek at you, the Flying Alarm Clock could be a delightful option. It won't shut up until you return the propeller to the base. (Various outlets, prices in the $12-$20 range.)




#3 magpie

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Posted 26 September 2012 - 11:58 PM

Sorry about what you are going through. This page from the EEOC may be helpful to you: http://www.eeoc.gov/...ce-conduct.html

It's The Americans With Disabilities Act: Applying Performance And Conduct Standards To Employees With Disabilities

#4 KMitchell25

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Posted 27 September 2012 - 01:46 PM

Thanks everyone for your responses. They were very helpful.

I had a meeting with my boss and HR today. They are not going to penalize me this time for Tuesday, but they are not going to accomodate a "flex start time" in the future in case it should happen again. They stated it would not be fair to coworkers if they were punished for being late but I wasn't. (is that a reason for denying an accomodation?) They are however going to allow me to nap on my breaks so that's good I guess. Praying this never happens again due to not being eligible for FMLA until the end of November and my job is not protected- SO I'm thinking of getting a Sonic Boom alarm clock- thanks for the link to the article!

I'm not going to get paid the overtime for working the weekend since they made me take yesterday off work- which really stinks. It's funny that this all came about after I asked for an accomodation- and that they allowed my coworker to work that many days in a row but did not allow me the same- but they stated it was an "honest mistake" and that my coworker shouldn't have been allowed either- Since it's a different pay period now they couldn't force her to take a day off. SO I just got the short end of the stick I guess? I'm just over it. It's funny that I work for an organization who takes pride in serving patients with care and love, but does not treat employees the same.
I'm starting Xyrem tomorrow and I hope that helps with my symptoms so that I can get to some sort of normalicy... I have days where I feel great and other days I feel like complete s*it right now. Today is a good day- probably because of the extra adrenaline from talking to HR. LOL Posted Image

Wish you all the best! Thanks again for responding and helping me out!

Kristen

#5 drago

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Posted 15 October 2012 - 10:41 AM

I had a meeting with my boss and HR today. They are not going to penalize me this time for Tuesday, but they are not going to accomodate a "flex start time" in the future in case it should happen again. They stated it would not be fair to coworkers if they were punished for being late but I wasn't. (is that a reason for denying an accomodation?) They are however going to allow me to nap on my breaks so that's good I guess. Praying this never happens again due to not being eligible for FMLA until the end of November and my job is not protected- SO I'm thinking of getting a Sonic Boom alarm clock- thanks for the link to the article!


OK, I want to venture an argument: your coworkers -- who don't have systemic neurological disorders -- have a leg up on YOU. It's not fair to YOU that they're not considering a reasonable accommodation for your narcolepsy.

This is actually the same problem I experienced with my superior (we had no HR so I had to deal directly with him). He told me it's "not okay to be late" because it "set a poor example," and I explained that the flexible schedule would NOT be about "allowing me to be late." Like you I can't always drive when I want, so I get it.

My accommodation recommended a 30-minute window. If I came in at 10:30am instead of 10:00am, I would stay an extra 30 minutes after work.

The thing is, technically, there are only specific reasons for denying an accommodation:
1) it is not due to a disability / no doctor's note
2) you cannot fulfill the requirements of your job description
3) the business can prove that the accommodation would cause impossible stress or cost -- i.e. if your accommodation required the installation of an elevator, for example, and the business is small and cannot afford to do so, then they can refuse the request

If they're being difficult about an accommodation like a flexible schedule, you should remind them that it's not just about you "being late" but also about your safety. It's hard, sometimes, when you are worried about getting to work on time, to be level headed and choose NOT to drive. And you need to be able to do that -- for your safety and others on the road -- you need to be able to WAIT, if you need to.

#2 would be my biggest concern in your situation -- does your job absolutely require your time clock? By that I mean, does it absolutely preclude a flexible schedule? Obviously, a fixed schedule is important to most jobs, but the question here is -- IS IT ABSOLUTELY ESSENTIAL? If the answer to that question is YES, then the flexible-schedule accommodation will be slippery.

However, "your coworkers will complain" is not a valid response. Neither is "setting a bad example." The argument needs to be that the job REQUIRES a fixed schedule, not that they don't want to deal with lack of sensitivity and/or misunderstanding with coworkers/employees. Employers don't have to like that stuff -- but they shouldn't use it as an excuse to deny your rights.

Also, other alarm clocks that I use include the sonic boom clock AND the following:

Oregon Scientific Aroma Diffuser and Sound Therapy Clock - http://us.oregonscie...user-Elite.html

Wakeup Light Clock - http://www.usa.phili...3471_60/prd/en/

Hope you're well,
drago

#6 Megssosleepy

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Posted 15 October 2012 - 03:21 PM

Also, other alarm clocks that I use include the sonic boom clock AND the following:

Oregon Scientific Aroma Diffuser and Sound Therapy Clock - http://us.oregonscie...user-Elite.html

Wakeup Light Clock - http://www.usa.phili...3471_60/prd/en/

Hope you're well,
drago


Is the Wakeup light clock the same as a light box? Do you know if it has blue light as well (needed to produce melamine as well?) I have been planning on getting a light box but this seems even better! But, the site doesnt say anything about blue light... I may actually paint the wall behind my bed sky blue for this effect! Thank you for the info!! I think a light box is essential during the winter months and cloudy days, I suggest that Every PWN get one! They are usually used for people with seasonal depression... I am not sure why they don't market them for PWN! I think some insurance companies will pay for it as well!


Edit- So I just looked it up on Amazon, it dose count as a light box for people with SAD, it was way cheaper on Amazon and I plan on ordering it right now!

I will let you know how it goes!