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When Do You Know If You Need To Take A Medical Leave?


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#1 funkbuffet

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Posted 17 December 2008 - 02:10 PM

Age:29
Da N: officially 9/07
Symptoms Onset: Jr./Sr. High
Other Health Issues: Yep, but they're in check its just the N messing stuff up
Da N as of now: Narcolepsy with Cataplexy
Co-stars: EDS and Cataplexcy
Supporting actors: Cata attacks through out the day
Sleep attack maddness
Confusion
Micro-sleeps and special guest


Current Status:
Sporadic functioning. I have now been home from work for close to two weeks and have been freaking out because my ability to take care of myself has been dicey.

Background:
I work for a small non-profit we don't have short/long-term disability when I took the position they shared that they would be adding new HR offerings in the fall, since the N was okay at the time I took the risk. The N has gotten worse over the past few months, in addition some work and life changes added to my stress. At this time I have used all of my PTO and FMLA is not an options since I started in April.

Concerns:
The sleep doc wrote me a very vague note for work just stating that I should be home until the end of the year. sad.gif
Why are there not case managers at sleep clinics or etc. to help with the details of this?
I struggling and stressing about what to do for many reasons like...
I really like my job and get energy from people
I feel like being at home will drive me stir crazy
I need to keep my medical insurance and get paid
One day I feel sort of okay but today for example I can barely keep my eyes open, head up, walk around my apartment and this post has take a every long time
The Dr. doesn't even have an estimate of when the symptoms may calm down so I can work, drive and etc.

I spoke with the direct supervisor over the phone for an hour, 2 days ago about the vague Dr.'s note but we left things up in the air. I think I was in denial at the time of our conversation thinking that I would be able to make it in the office this week and or do a ton of work from home. The truth is I have no idea what the hell is going on with the brain, weird things are happening daily, symptoms have intensified and are much more frequent than ever before.

How muc detail to I share with work about the N? I know by law they can't ask.
How to you attempt to keep your job, reduce drama,


Moving Forward:
  • Due to start Xyrem this week
  • Re-establising a routine
  • Dr. increased Provigil to 600


Okay been working on this for a few hours so please share any incite or ideas


#2 Mike M

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Posted 21 December 2008 - 01:00 PM

QUOTE (funkbuffet @ Dec 17 2008, 01:10 PM) <{POST_SNAPBACK}>
I have now been home from work for close to two weeks and have been freaking out because my ability to take care of myself has been dicey.


Yuck! One of the things that works best for me when things are bad is to remind myself that much of this is out of my control. I know that stress tends to exacerbate my narcolepsy. I also know that "pushing harder" tends to make the rest of my body succumb to other diseases.

QUOTE (funkbuffet @ Dec 17 2008, 01:10 PM) <{POST_SNAPBACK}>
The sleep doc wrote me a very vague note for work just stating that I should be home until the end of the year. sad.gif
Why are there not case managers at sleep clinics or etc. to help with the details of this?


One of the most frustrating things I have found is that most "sleep clinics" are not set up for us. We are not the "nightmare" that insomniacs present, but we are close. Many "sleep doctors" have little to no idea of how to "treat" us. They have some guidelines and some experience, but most are in the business of sleep to treat apnea. As a result, getting "help" is a major pain. And, because narcolepsy and our meds can impact each of us so differently, the best we can often hope for is vague notes. Doctors don't like to make definitive statements about PWNs because being wrong might lead to lawsuits. Your best bet is to know what you want from your doctor before entering into the clinic and refusing to leave until you are satisfied. Also, this forum and other PWNs have been invaluable to me. There are many good doctors out there, who do want to help us. I also think that many of the ones that frustrate us are genuinely trying to help; they just don't know enough about narcolepsy to do much good.

QUOTE (funkbuffet @ Dec 17 2008, 01:10 PM) <{POST_SNAPBACK}>
I really like my job and get energy from people


I am quite similar in that regard. In fact, many people struggle to believe how sleepy I truly am because I am such an extreme extrovert. Is there anyway you can get into the office with someone else? Would that allow you to function?

QUOTE (funkbuffet @ Dec 17 2008, 01:10 PM) <{POST_SNAPBACK}>
I feel like being at home will drive me stir crazy
I need to keep my medical insurance and get paid
One day I feel sort of okay but today for example I can barely keep my eyes open, head up, walk around my apartment and this post has take a every long time


After thinking I had a handle on "whatever" was happening to me in the summer of 2004, things got so bad by December, I felt the need to take off the last trimester of the school year. The first month was awful because I did NOTHING, and it drove me nuts. Eventually, I found a routine that helped me get my mental health back under control. It still took two more years of searching until I got my definitive diagnosis of narcolepsy. The realities of money and health insurance are huge. Given what you have said, I would argue that you should see if there is anyway you can catch a ride with a co-worker or use public transportation. On the days when you are totally shot, stay home, but I know that on even some of my worst days, being at school allowed me to function enough to do my job. The last few weeks have actually been like that for me. I have barely been able to get out of bed, but forcing myself to go to work and doing what I could (and being okay with whatever I do or don't do) has allowed me to only miss one day so far due to health.

QUOTE (funkbuffet @ Dec 17 2008, 01:10 PM) <{POST_SNAPBACK}>
The Dr. doesn't even have an estimate of when the symptoms may calm down so I can work, drive and etc.


Again, I think that is a common theme for many of us. Because they have no clue, they don't even try to guess. Trust yourself and keep remembering that it is not YOU. Narcolepsy is its own entity. Accepting it and acknowledging it are vital to being able to function. We are people with a disability. That does not mean we are useless, but it does mean that certain things will take us more time and others will be far more difficult.

QUOTE (funkbuffet @ Dec 17 2008, 01:10 PM) <{POST_SNAPBACK}>
I spoke with the direct supervisor over the phone for an hour, 2 days ago about the vague Dr.'s note but we left things up in the air. I think I was in denial at the time of our conversation thinking that I would be able to make it in the office this week and or do a ton of work from home. The truth is I have no idea what the hell is going on with the brain, weird things are happening daily, symptoms have intensified and are much more frequent than ever before.


I know that I regularly battle denial. Often, I think, "I can get that done tonight." Only, I can't. In fact, it was ridiculous to pretend that I could. After 6 years of having no idea what was wrong with me, and another year and 4 months of knowing it is narcolepsy, I think I am finally beginning to learn that I am limited. More importantly, I am starting to be at peace with what I can do and what I can't do. This disease has changed my life, but I don't have to let it ruin my life. Instead, I am working to appreciate what I can and prioritize the things that are most important to me. As a result, I am much happier than I have been in years, even though I have a chronic condition that might still get worse.

QUOTE (funkbuffet @ Dec 17 2008, 01:10 PM) <{POST_SNAPBACK}>
How muc detail to I share with work about the N? I know by law they can't ask.


If you like your job and trust your employer, I would tell. Hopefully, you can make arrangements so that you can continue to work productively, but also handle the quirks of narcolepsy. Many places even allow you to "nap" periodically. I would also suggest that you read over the ADA (Americans with Disabilities Act) information on the NN website. I believe that your work place is required to accomodate you. You are still bright and hard working, you just have some sleepiness that will get in the way from time to time.

QUOTE (funkbuffet @ Dec 17 2008, 01:10 PM) <{POST_SNAPBACK}>
How to you attempt to keep your job, reduce drama,


The biggest thing for me is working part-time. I am lucky to be in a supportive environment. I do not nap during the day, but I am also such an extreme extrovert that I can function decently at school even on my worst days. I also see a therapist once a month, participate in a men's group every other week, write a blog about living with narcolepsy, and spend lots of time learning and sharing on this forum and a few others. Finally, my major hurdle is acknowledging that I am finite. This condition makes it extremely difficult for me to do anything to the standards that I have in my head. I continue to re-learn how to accept what I can do and not beat myself up for being a disappointment. Beyond all of that, I also use chiropractic, massage, and acupuncture to improve my quality of life. I have done yoga before and continue to work to get myself back into some kind of routine with that and exercise.

QUOTE (funkbuffet @ Dec 17 2008, 01:10 PM) <{POST_SNAPBACK}>
  • Due to start Xyrem this week
  • Re-establising a routine
  • Dr. increased Provigil to 600


Those plans sound awesome. I hope the Xyrem works well for you. I have been on it since my diagnosis. While it is not a miracle cure for me, it definitely makes a huge difference. I am also a huge fan of routine, especially when it comes to sleeping and waking. Finally, good luck on the Provigil change. I took 400 for three months, but it was a terrible drug for me. Whereas I could take 80 mg of methylphenidate and barely feel anything, 400 mg (and then 100 mg) of Provigil gave me overwhelming anxiety and uncontrolled weightloss. I now take amphetamine, which works decently for me (30 mg when I wake up, 30 mg more at Noon).

Good luck! I do hope you can find a good groove.

#3 dogdreams

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Posted 21 December 2008 - 10:04 PM

I'm so sorry it's been so difficult for you. This sounds like when my N hit me hard in the beginning. I don't have any specific advice for you, but I know that it came to the point where I couldn't make it to class (I was in college.) I missed 2 weeks of school at the beginning of Spring quarter. I was at my wits end because I kept saying "I HAVE to go! I HAVE to go!" But I couldn't even get to my car to drive.

Then my boyfriend at the time sat me down and said "Don't do what you HAVE to do. Do what you CAN do." It took awhile to sink in, but I went and explained it to my teachers and ended up dropping out of school. My doctor thought I was just being dramatic. But soon afterwards he saw my C and finally took me seriously. He finally gave me some antidepressant to control my C and a month after I dropped out, I was working and back in school in a new program...something that was much more interesting than what I had been studying before.

But those words always stuck with me. "Don't do what you HAVE to do, do what you CAN." Maybe that helps you a bit. I don't know. I do know that every boss I've ever had was cooperative and understanding of my N issues, except the one that just simply couldn't comprehend what it was. But that was a long time ago, so it doesn't seem like such a big deal now.

#4 funkbuffet

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Posted 29 December 2008 - 01:35 AM

QUOTE (dogdreams @ Dec 21 2008, 09:04 PM) <{POST_SNAPBACK}>
But those words always stuck with me. "Don't do what you HAVE to do, do what you CAN." Maybe that helps you a bit. I don't know.


Thanks, this helps a ton smile.gif no joke, I just might have to put that quote on my fridge. For so many years I've been setting crazy goals, pushing to do way too much and/or struggling to say no when asked to do projects & etc. Its only been a year that I was diagnosed with the N, and like many others the layers of guilt are thick from wondering why can't I do... now my body has stopped me dead in my tracks. One thing that is clear during this time is that, I must find the balance between having a strong work ethic and the realization that I have Narcolepsy thus meaning there are some things I can't do.

#5 funkbuffet

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Posted 29 December 2008 - 02:13 AM


QUOTE
Yuck! One of the things that works best for me when things are bad is to remind myself that much of this is out of my control. I know that stress tends to exacerbate my narcolepsy. I also know that "pushing harder" tends to make the rest of my body succumb to other diseases.


Pushing myself too hard is an on-going struggle. Due to years of not having answers and being told it's just you, you're depressed etc. etc. I pushed to get an answer yet even with the diagnoses of the N there are still medical professionals that question the true impact of the N on daily life. When most of the world minimizes your experiences one tends to adopt the misbeliefs of others now I struggle to listen to my body and defend my condition's affect on my life.

Thanks for your words!



QUOTE
One of the most frustrating things I have found is that most "sleep clinics" are not set up for us. We are not the "nightmare" that insomniacs present, but we are close. Many "sleep doctors" have little to no idea of how to "treat" us. They have some guidelines and some experience, but most are in the business of sleep to treat apnea. As a result, getting "help" is a major pain. And, because narcolepsy and our meds can impact each of us so differently, the best we can often hope for is vague notes. Doctors don't like to make definitive statements about PWNs because being wrong might lead to lawsuits. Your best bet is to know what you want from your doctor before entering into the clinic and refusing to leave until you are satisfied. Also, this forum and other PWNs have been invaluable to me. There are many good doctors out there, who do want to help us. I also think that many of the ones that frustrate us are genuinely trying to help; they just don't know enough about narcolepsy to do much good.


This is why, the debate over what to do is so hard. My friends and co-workers are like "So the doctor didn't say that you had to take leave!" I know that some folks were focusing on that vagueness to cheer me up or give me an out. On the other hand I felt like the vagueness meant that it (current N symptoms) weren't such a big deal thus I was over reacting. Is there a list anywhere on the better N docs for MN?


QUOTE
I am quite similar in that regard. In fact, many people struggle to believe how sleepy I truly am because I am such an extreme extrovert. Is there anyway you can get into the office with someone else? Would that allow you to function?


I am an extreme extrovert as well thus often being able to hide the intensity of my symptoms. A few weeks ago my ability to function were beyond transportation but now things are getting closer to a place were I should be able to work at the office soon.


QUOTE
I have barely been able to get out of bed, but forcing myself to go to work and doing what I could (and being okay with whatever I do or don't do) has allowed me to only miss one day so far due to health.


I am looking forward to only missing a day or so due to health, on my way! In a period of an 1-2 hours the EDS, Cataplexy, Auto-behavior and more were on a crazy rotation; one moment I'm alert next thing I wouldn't remember typing the last few paragraphs, mid-sentence I would forget the topic-space out-stop talking-to then talk a mile a minute about something totally different then to only find myself fighting to keep my eyes open after.


QUOTE
Again, I think that is a common theme for many of us. Because they have no clue, they don't even try to guess. Trust yourself and keep remembering that it is not YOU. Narcolepsy is its own entity. Accepting it and acknowledging it are vital to being able to function. We are people with a disability. That does not mean we are useless, but it does mean that certain things will take us more time and others will be far more difficult.

I know that I regularly battle denial. Often, I think, "I can get that done tonight." Only, I can't. In fact, it was ridiculous to pretend that I could. After 6 years of having no idea what was wrong with me, and another year and 4 months of knowing it is narcolepsy, I think I am finally beginning to learn that I am limited. More importantly, I am starting to be at peace with what I can do and what I can't do. This disease has changed my life, but I don't have to let it ruin my life. Instead, I am working to appreciate what I can and prioritize the things that are most important to me. As a result, I am much happier than I have been in years, even though I have a chronic condition that might still get worse.


This is very helpful to read, thanks! I know denial is the battle within the war of the N.

#6 Mike M

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Posted 29 December 2008 - 11:50 AM

QUOTE (funkbuffet @ Dec 29 2008, 01:13 AM) <{POST_SNAPBACK}>
Is there a list anywhere on the better N docs for MN?


Sadly no. I have a feeling that the best doctor in the state is not practicing right now, but she runs the MN support group. I do like my doctor for sleep, but I know a few others who are not sure about him (I also have days that I feel that way). My doctor is Patrick Wright who works for the MN Lung and Sleep institute. He is a pulmonary doctor, but has dealt with at least a decent number of narcolepsy patients. Unfortunately, I think the best doctors to see are neurologists, but not many in MN study sleep. I have heard great things about Troy Payne in Saint Cloud. I am actually hoping that I can find a way to see him in the next few months just to get a second opinion on what I am taking and how things are going. Hopefully, you will get a chance to talk to other PWNs at the next MN support group and can here the opinions of others.

#7 Dreamer

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Posted 31 January 2009 - 11:37 PM

QUOTE (Mike M @ Dec 29 2008, 10:50 AM) <{POST_SNAPBACK}>
Sadly no. I have a feeling that the best doctor in the state is not practicing right now, but she runs the MN support group. I do like my doctor for sleep, but I know a few others who are not sure about him (I also have days that I feel that way). My doctor is Patrick Wright who works for the MN Lung and Sleep institute. He is a pulmonary doctor, but has dealt with at least a decent number of narcolepsy patients. Unfortunately, I think the best doctors to see are neurologists, but not many in MN study sleep. I have heard great things about Troy Payne in Saint Cloud. I am actually hoping that I can find a way to see him in the next few months just to get a second opinion on what I am taking and how things are going. Hopefully, you will get a chance to talk to other PWNs at the next MN support group and can here the opinions of others.




Mike, I just wanted to let you know that there ARE good doctors in MN! Actually, Troy Payne (sleep specialist @ Neurology Clinic of St. Cloud) was the doctor that gave me my narcolepsy diagnosis! However, the knowledge, experience, technology, etc. is limited there. Unfortunately, after many appointments and trying many different Rx's, Dr. Payne had to refer me to somewhere else because he had tried all he could do, yet nothing was helping. I have a rather severe case of Narcolepsy, I guess you could say, so he sent referral letters to the "Center for Sleep Medicine" in the Neurological Center at the Mayo Clinic in Rochester, MN as well as one to the Hennipin County Sleep Center in the Twin Cities. I received a rejection letter from the Director of the Sleep Center board at the Hennipin Cty Center, stating they would not accept me as a patient because they "don't feel there is anything further they can do for me"!!! I was devistated and called to speak to them about their rejection. I kept getting the run around whenever I was able to speak to someone there, so I asked to speak to the head of the board that made the decision. He flat out REFUSED to speak to me or even to Dr. Payne! They were all SO rude, too! Thankfully, then, I received a letter from the Mayo Clinic of Rochester, MN (which is known as one of the best clinics in the world) welcoming me as a new patient, etc. Since then, I've been seeing a highly intelligent neurologist there. He has managed to help me enormously! The Mayo, in general, has been wonderful! That place is amazing! Anyways, just thought I'd share my path of MN Dr.'s in case it could somehow help you. Good luck!