warning:  this is a little long and whiny...

I’ve been up since 2:00 and have had two hits within that time.  During the day when I have a hit an I make it go away, I feel a bit of a sense of triumph.  When they hit at night and I end up sleep-deprived, I feel exhausted, wiped out, angry, frustrated, sad – Definitely not in the right mind to go to work and manage people. 

As I think I mentioned, I had been out on FMLA leave.  I went back last week and was able to manage myself and the staff under me okay.  The hits were normal and I dealt with them for a few days.  Then, earlier this week the night-time hits (which are worse for me) increased and I’ve been out again since Tuesday.  Professionally/work-wise, it makes me feel like a weakling and a failure.  As if my own self-flogging wasn’t enough, I got an email yesterday from my HR manager, who said that I should cease working at all with my staff (answering questions, checking work, etc.) while on FMLA time-away.  I wasn’t seeking any compensation or any reduction of the recorded FMLA hours – I just wanted to help a couple of folks who needed advice to keep their work moving along. 

I suggested that since there was some uncertainty about when my episode will end (God, I hope it is soon!), maybe we could work out some graduated re-entry by having me come in when my head is clear and/or doing  some work from home.

The answer was not only a firm, “no,” but that I should be aware that my continued absence causes my work to fall behind and that I should be prepared for that to be reflected in my performance evaluation because my not being there physically affects the overall performance of the group. Further, he said, when I come back I should probably consider taking a lower level job and that would mean a considerable (up to 50%) cut in pay.  Not to toot my own horn, but my work history and performance evaluations have always “exceeded expectations.”  Without going into detail, my “gentle” management style, which produces some awesome work from the people under me, is not at all in alignment with my supervisor’s very aggressive manner (I’ve been under the thumb of this manager for three years now).   I believe that she is using my illness as a means to get me out of there.

I have already (yesterday) contacted the university’s HR FMLA “specialist” and have forwarded her copies of my FMLA paperwork, past performance reviews, and the email from my HR manager in preparation for a phone meeting with her this afternoon to discuss whether the spirit and/or law of FMLA is being ignored by my supervisor.  On the side, I have been actively looking for a job in a different office, but I want for the decision to make the move of there to be mine. 

I feel as if I am being hit while I’m down by some pretty mean people and feel like my succession of unproductive preventative meds, the headaches, and a bit of depression make me feel awfully vulnerable.  I hope to get some clarity today from the FMLA specialist regarding my rights upon my return to work.  I’ve used less than six weeks of the allowable FMLA time in the last twelve months.  Fortunately, I haven’t had to go without pay because I had sick time accumulated, but that bank is running dry and I’m now tapping my accumulated vacation time.  I know that they can’t legally reduce my salary, but if I make a big stink now they could (and probably will – I’ve seen it done to several people) assign additional and unreasonable loads of work to make it possible to give me an unfavorable work review. 
I’m in a post-headache babble, I know, right now, and maybe feeling somewhat paranoid.  But if my livelihood is on the line in addition to my current CH episode remaining unresolved, I’m not sure what to do.  I feel angry and am trying to be very careful not to blow any loud whistles prematurely.

I haven’t seen a therapist in quite a while and have been all week trying to get a “fast” appointment with a psychiatrist, so that I can vent and so that he/she can review the medications that I’ve been on. Even with FMLA in place, I’m wise enough to know that people much meaner than me have no hesitation in harming careers.  As a manager myself, I totally understand the organizational frustration of having to pick up loose ends myself when others are unable to.  I’m sure that there are people who are mad at me for having to try to do my work for me.

Bottom line:  Some of you must, in the course of your careers, had similar problems with your employers.  I don’t want my CH to rule my life, but the reality is that for the past few months, physically, they have.  Do I need to accept reality and look for a more secure, less managerial, lower level position?  How have you long time and chronic CH people handled your careers and balanced them with your headaches? 

Jim

Quote:

I haven’t seen a therapist in quite a while and have been all week trying to get a “fast” appointment with a psychiatrist, so that I can vent and so that he/she can review the medications that I’ve been on.

Jim, I can fully understand your need to see a therapist or psychiatrist in order to vent. The biological mechanisms that trigger depression are all present in cluster headaches, and the prolonged pain as well as the threat to our jobs and families can be overwhelming. One technique that is often useful, especially as it helps us objectify our problems, and makes us feel more in control, is to simply use pen and paper. List every problem or concern you have, and underneath each, list every possible solution without evaluating the solution's worthiness. Make the list as complete as you can, and only after it is finished, begin to evaluate your solutions for merit. The rationale behind this technique is simple: one cannot think and feel at the same time. Two different biological processes are involved and are mutually exclusive. Just the act of talking, or in this case writing, about problems and solutions can begin a restructuring of your neural pathways.

Just a question, though. Why see a psychiatrist for med evaluation for cluster headaches instead of a headache specialist? Blessings. lance

Jim,

       CAVEAT: I am not an employment attorney, nor do i play one on TV, and you should not take the following as legal advice. You should consult with an attorney who specializes in employment law for legal advice in this matter.
       That said, if you're using using your accumulated sick time, and drawing a paycheck while out, I don't believe that should count against your FMLA time. Also, you may be able to find some solace in the Americans with Disabilties Act (more commonly known as the "ADA"). Even more helpful (probably) should be the recently enacted Americans with Disabilities Amendments Act (a/k/a the "ADAA", which essentially vastly expands the meaning of a "Disability" under the ADA). I believe that CH would probably now be considered a "disability," at least in terms of the workplace, under the changes made to the ADA by the ADAA. But as i said, f you are that worried, I would seek an employment attorney's advice.
       "Don't let the bastards grind you down"
       Wishing you a speedy cessation of The Beast, and a return to "normalcy", with no cut in pay or loss of employment.
       PS - I just got nailed by The Beast, too, which is why I'm up at this hour. Work + The Beast = a crappy time of things. About to crash out again ..... Best of Luck to you & God Bless! 

My worst ones are now hitting in the wee hours of the morning. 

Lance, I've just gotten an appointment with a psychiatrist who is part of a pain clinic.  I'm concerned, med-wise, that both my GP and my Neuro have wanted to take a wait-and-see approach and I have kind had to tell them "this drug isn't working and this is the next one to try."  I want an MD psychiatrist who's going to sit with me for more than a few minutes take a look at my pharmaco-psychological situation. 

Neal, I just opened the ADAA and will read the legalese this morning.  Frankly, I'm using the sick time because I can't afford to go unpaid and at the same time I need the protection provided by FMLA.  I'm ashamed to say that I'm a manager in an office that, above me, pretty much lacks compassion and WILL take disciplinary action if I have more than seven instances of "unplanned absence," which includes sick time, in any rolling 12 month period.  The policy is in place for genuine malingerers, but my boss uses the threat of it every chance she gets.   I am actively looking for another job, but we all know that's not awfully easy right now. 

Jim

Has anyone every looked into this for CH?

SEC. 4. DISABILITY DEFINED AND RULES OF CONSTRUCTION.  "SEC. 3. DEFINITION OF DISABILITY. "As used in this Act:
"(3) Regarded as having such an impairment.--For purposes of paragraph (1)(C):
"(D) An impairment that is episodic or in remission is a disability if it would substantially limit a major life activity when active.

It might not be a bad idea to get an advocate in your corner if a lawyer isn't feasible right now.  I found this START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE and this START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE not sure if you can get in contact with them in time or not but it couldn't hurt to try.  Maybe you can conference an advocate in on the call.

<Edited to add another link or two.>

Employment information from the Patient Advocacy Foundation.
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Request Patient Assistance with a Case Manager
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

jim

about 13 years ago i worked for a flooring company. i worked for them for about 5 years. 5 years  is the usual duration of remission for me. we took alot of road trips and sitting in a truck is one of my triggers. (go figure right?) so i was having these attacks in a van riding down the highway with 2 or 3 other guys. needless to say this made them uncomfortable as im sure you can imagine. well this went on for a month or so and i got fired. they told me that nobody wanted to work with me. they knew how bad these attacks were. and this was a small company.

ok so im out of a job. i collect unemployment right? WRONG. they refused the claim and the reason was "willful neglect of duty". well this shit went on for 3 months. no income. my house was lit with candles, i was harvesting rain in 5 gallon buckets to bath and flush the toilet with and i don't even remember what i ate. in a nutshell i was in world of shit. and the hits came all day and night and were extremely intence. this is before i had any clue about o2 or any kind of drugs or anything really. i  didnt know any of you guys. it would be impossible for someone  to imagine this kind of shear torture and mental strain.

one night i walked down to a payphone to talk to some lawyer. the lawyer told me he wanted $2200 retainer before he could take my case. i asked him how am i supposed to come up with that with no income? i said alot things to him at that point. then i hang up and walked home. i walked in the door, calmly looked around, picked up a chair and started tearing up my furniture. lamps tables chairs the couch. everything except the fridge. i went fucken nuts jim

couple weeks later i was working another job and i had to do a unemployment hearing with a judge and my ex-employer via telephone from a motel room in chicago. i politely and completely made an ass out of my ex-boss  and the judge awarded me $3700 in back unemployment.   with paying my bills and getting rent up to date and paying off lenders i broke even.

it never happened to me again jim. this bullshit going on with your employer may get worse but im sure with what you learned from this it will be the last time.
i can't offer any legal advise but stick to your guns keep your cool and  keep us updated.

I can't say it enough, and, this you already know but
Document document document!

Every conversation, every phone call, every memo - document.  Everytime you speak to your supervisor or call the HR manager or whatever - document time, date, and what was said.  Document your understanding of what is going on and what, if any, conclusions or warnings were given about your FMLA time.  Document what your work responsibilities were before the FMLA time so, if needed, you can contrast them to your post-FMLA responsibilities.
Have these documents organized and ready to call up at a moment's notice if necessary. 

It's a pain in the backside to do, but it is good protection that works...