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About Arrow2

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  • Birthday 10/04/1968

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    Roseville mn
  • Interests
    Photography, dogs, and keeping my day job.
  1. Stevey - Thank you for your post. It really helps me to know other people out there are struggling with the same thing and also using the same thought process to try to see a path forward. This situation we find ourselves in is so complex with health, meds, diet, office politics, reputations, income implications, potential disability and many other variables in play at once. I am thinking like you, trying to outline the options and taking my best guess at the ultimate outcome of them. I have 3 different options in my head for returning to my current job. The last option is not returning to my current job. Unlike you, I haven't gotten to the point of actually considering what else I could do -- I guess that might be next. As far as your current position goes, I am a project manager and pick teams to work on my projects (and this does involve picking field people too) and have been in this role for 10 years. Your evaluation of the effects on N on your place on roster appears to be very logical and in my experience it is probably correct. We always need to have hope and keep trying different treatments, but I think its important to be rational and not be afraid of really looking at the reality of the situation. It appears you have done this. I am also in a very niche-like segment of my profession (I work only on Airports). I did the same kind of evaluation of how my superiors are going to look at assigning me the PM role on projects going forward and my conclusion was similar to yours...
  2. The motivation to fill out the FMLA forms is to make sure you try to get your job protected under the "Family and Medical Leave Act." Essentially, FMLA protection make it less appealing (or at least more complex) for your employer to fire you to do N and related symptoms. Like zombieprincess I was reluctant to get FMLA forms filled out. I'm not sure why but I think it was because it would "formalize" that I had a health issue that I was unable to just deal with on my own. In the end, I did it because I figured out that everyone knew anyhow and filling out the forms helped protect my job. I was told by one member of my health care team that one of the main drivers behind the initial passage of FMLA was to accommodate people undergoing chemotherapy and make sure their job was protected. Someone undergoing successful chemo would likely need a big chunk of time off initially, followed by intermittent time off during recovery. FMLA is used for tons of different things now, but the chemo example helped me understand the two different types of leave under FMLA. 1) an extended leave (up to a certain annual limit) to deal with an issue that requires a bigger chunk of time and 2) intermittent leave to deal with continued recovery, dr appointments, etc. In the case of N, the idea of filling out the forms is to tie the needed leave to the medical condition (which is where the Dr's medical certification comes in). I don't think the forms mean anything if a health care professional does not provide the certification... Once the forms are complete, in theory the employee is protected from being fired solely due to missing work due to the condition and according to the general schedule outlined in the forms. I think you can still be fired if you are simply unable to perform your job, even with FMLA and other accommodations. Personally, I really like the way ZP refers to "FMLA issues" when communicating that she needs to miss work due to N-related stuff. Easier (and for me, less embarrassing) to say than "tired, or foggy or..." and it also reminds your employer that you have some protection (kind of what DeathRabbit was getting at). If your forms are already filled out, you should just be able to look at them to see if they are for extended or intermittent leave (or maybe both). Hope this helps -- it helped me to write this stuff down. Caveat: This is just my understanding. I just started learning about all this a couple of months ago so I could have a bunch of stuff wrong....
  3. Sounds like you are trying all the right things. If you get to the point of considering a new one, there are quite a few for sale most always on craigslist (at least here in MN). I picked up a new unused in the box one for half price (after some minor polite bargaining).
  4. Fred - Right there with you. I hear that same quote and used to say it to myself all the time. I just got diagnosed with N this month, so am still trying to absorb what it means. It helps to have a reason for what's been going on, but over the past 5-10 years (I'm 44 now) my career path has slowly shifted from "I can go as far as I want" to "Can I keep my job?" Pretty freaking humbling (like deathrabbit said) and scary. I am having trouble seeing how I am going to navigate the road ahead. I'm working on lifestyle changes and will start a new med (concerta) in two days. I still have 2 months of medical leave to get some kind of foothold established. I will work hard and remain hopeful.
  5. I'm 10 days into a 90-day medical leave now. The job I have waiting for me is 90% desk job, full of technical writing and analysis based on interpretation of complex US DOT guidelines. The other 10% is presentations to things like City Councils and running public meetings. I work in the private sector and competition for work between companies and between coworkers within my company is intense. I hope I get a good med / life style changes combination going so I can go back to that job. The way I feel right now, my ability to go back is in question. Hard to be at your best when all you want to do is sleep and when u r awake concentration and short term memory is bad...
  6. My name is Andy and I am about a month into all of this stuff. At first i was relieved because i finally had a reason for being freaking exhausted all the time. After i saw things like "life-long" and that there is not any treatment for the cause, only the symptoms, my relief went away replaced by dread. My biggest concern is about my career -- i don't know if i can do it anymore. I guess i dont really know what to expect but it's good to have this forum to come to. I don't have an official narcolepsy diagnosis yet but i did get diagnosed with hypersomnia.
  7. I guess I don't have much to add other than I know that dreams can occur in other stages of sleep so dreaming doesn't equal REM. As far as the two week wait before the appointment goes, I also was faced with such a wait. I was also told I would need to wait 2 weeks for the results to be mailed to me. I was in a spot where I couldn't accept these timeframes. I called the sleep center a few days after the sleep study and after some polite questions I was able to pick up the results in person -- 4 days after the test (they were about to spend 3 days in the hospital bureaucracy before even being mailed). I was also successful in reducing my wait for the appointment. Most Dr's have cancellation lists, but I don't think I have ever had an appointment moved up because of being on them. What does work very well is to call the scheduler (or scheduling department) and ask if there are cancellations. Schedulers hate cancellations because that means they have to try to fill it, which involves calling people on the cancellation list, leaving messages, working with schedules, etc. If the cancellation is for that day, they often won't even try to fill the spot due to short timeframe. Either way, they love being able to fill a spot quickly and easily with somebody already on the phone (and hopefully that someone is you!). Anyway, I was able to reduce wait for my appointment by 1 week by calling. So, long story short if you want results sooner, call and ask if you can pick up in person. If you want appointment sooner and have a flexible daily schedule, call mid-morning and ask about cancellations. Good luck!
  8. Koko - The only thing I can say for sure is that I know EXACTLY where you are at. I don't think your situation is fair either. I am sure this situation will sound familiar to others here is well. My compassion and empathy won't help fix your problems, but maybe it will help a little to know you have them. You will probably get a lot of advice on what to do. My advice is to call a lawyer. Not one of those you see on TV for disability with "no payment unless we win", but a regular lawyer. At this point, you are looking for information (I think), not actually filing a case. Two weeks ago, I did a google search for "employment law lawyer" and the name of a fairly large city near me. I found a site that looked "normal." They had a form you could fill out online to briefly describe your issue. It said a lawyer would call you the next day. Well, the next day I got a call from an actual lawyer specializing in disability accomodations in the workplace. In 15 minutes, she helped me sort through what were legal issues and what were not. It helped me greatly. It was free -- it is essentially marketing for them. The lawyer was glad to help me and there was absolutely no pressure to form any kind of ongoing legal relationship. 15 minutes with a lawyer won't solve anything, but it may help clear your mind a bit and help you decide what your options are and what actions you might consider taking. Good luck.
  9. Lots of good info in drago's post. I am glad I found this forum. I have a couple of quick thoughts. I believe drago is correct that REM is not the only stage of sleep in which we dream. Every definition of dreaming I have found indicates that only "most" dreams occur in REM. The common (but incorrect) assumption that dreams occur only in REM creates confusion, especially when discussing MLST results. The ability to dream outside of REM explains so many people (me included) remember dreaming during a MLST nap for which no REM stage sleep was recorded. Dreaming does not necessarily = REM stage sleep I also believe drago is correct about the fact that lots of recorded spontaneous arousals do not necessarily mean one is getting "bad" sleep, especially if you can't remember them. I hope you get your life back soon!
  10. I don't know how you guys do it either. I worked and "got by" for 3 years before being diagnosed. I gradually had responsibilities taken away and a good reputation largely destroyed. I am newly diagnosed and I don't think I have the ability to "get by" anymore. I have a 3 month leave ahead of me and am already scared treatment isn't going to do enough and I will gradually lose my job despite accomodations. It sucks to finally know what is wrong but be told there is not cure...
  11. I have been using a fitbit since september and find it very useful. I know there are others out there that might be the same or better. I created a fitbit group on thier site for narcoleptics if anyone does get one and wants to share sleep data. Let me know and I will invite you Easy to sync info to their website and the sleep tracking is more sophisticated than just movement i think. search the fitbit site for sleep accuracy and you get a lot of user experiences. Here is one post I found useful: I work for a Sleep Diagnostic services company. We have over 45 sleep labs, currently. Near as I can tell the FitBit uses a technology similar to wrist actigraphy. (Acutally, I would be surprised if it was not actigraphy). As I understand, actigraphy has been used primarily with narcolepsy and insomnia patients. Although we do not use sole actigraphy in any our sleep labs, it does appear to have its clinical merits when it comes to tracking “wakes” and “sleeps.” Actigraphy cannot tell you the quality of sleep you are getting or be used, solely, to diagnose a sleeping disorder. It can, however, be an effective tracking tool and can be used to collect useful data to take to your Board Certified Sleep Physician for referral for further diagnostic testing. Quality sleep is crucial for overall wellness and health. There are critical cellular rebuilding processes your body goes through during stages of sleep. If you are noticing a significant number of “wakes” it may be worth your time to evaluate your sleeping habits. If you sleep with Fluffy or Fido, it may be best to move them to the floor. If you consume caffeine within 3 hours of bedtime, you may wish to consider changing that behavior. If you make some simple behavior changes and still have significant “wakes” call your local Board Certified Sleep Physician or a local AASM accredited sleep center ( to find an accredited center near you). You will want to make this call immediately if someone you tells you that you snore, or if after a “full nights sleep” you wake up still not feeling “refreshed.” These are symptoms that indicate you could have Obstructive Sleep Apnea (OSA). OSA is directly correlated with obesity, high blood pressure, heart disease, diabetes, GERD, etc. If you have more questions about sleep, try the National Sleep Foundations website ( I love my FitBit and I love the “wake” and “sleep” function. It’s one of the reasons I opted for this device over some of the other ones on the market. I can tell you we have had LOTS of fun “testing” the functions of the FitBit at work! So far, so good! Enjoy and Sleep Well!
  12. Hello - I wear a fitbit during the day and at night. I just got a new one after my dog chewed my old one a couple of months ago. Anyway, I track my sleep and daily activity and thought it might be fun / helpful to share that info with other fitbitting narcoleptics. Here is the group link: Its a private group so contact me there or here with your fitbit name and I will invite you. Cheers
  13. I've worked in the same field for 15 years, but the last two have been a real struggle because of what I now know to be narcolepsy. I feel like I have been failing in small steps over that time. Looking back now, my career opportunities are very different than they were two years ago. I have just begun a medical leave from work and I am going to spend time considering different career paths I am very curious to see how many people switched careers (or stopped working altogether) after being diagnosed with narcolepsy and why (or why not)l. My answer would be something like this: Before N Job: Project Manager for large transportation-related planning projects. After N Job: TBD Reason: I switched my job because the length and complexity of the projects did not fit well with the unpredictable schedule and lack of concentration that narcolepsy brings. I took my new job because it provides the flexibility and "bite-sized" work tasks that I need now. Anybody want to share their career changes (or lack thereof)?
  14. Having just spoken to a sleep specialist last week, I agree with most all of what Munky said. I look at my job prior to Dr. appointments as being one of collecting and organzing as much relevant information as I can. Then I let the Doc absorb it and respond. I also always have a list of questions. Bringing notes (or in my case a kindle with Evenote) to a Dr. appointment is absolutely essential. You have to be prepared to get the most from the appointment. I'm on the fence regarding research beforehand. I limited my research to a google search on "preparing for a sleep dr appointment" or "preparing for a narcolepsy-related dr appointment". For me personally, I find researching actual conditions too much on the web to be isolating, overwhelming. There is so much out there. If I do research, I limit it to sites like Mayo or wiki -- basic factual stuff. After I speak to the Doc, I feel a little more grounded and more able to process info correctly. One of the questions I always ask is where to go online to get both factual info and also support from other people in the same situation as me. After I gain a basic understanding from both the Doc and the factual sites, then I dive into more sites and expand searches, including the scholoary articles as there is a ton of good stuff out there and it is very useful once I have my own personal context to filter it.
  15. Mina - Regarding my post above, if you want to respond maybe its better to do so under your "what to ask the Dr Thread." We should keep this thread focused on test results and talk in the other one.