A.

I maaade it back to work yesterday!  I felt well enough to go in yesterday.  
I had been struggling with some of the same questions - suck it up and deal with it, stick it out at home until I feel better?  Disability short-term?  This has been the worst cycle I have had and it is going on...

I truly feel for you Maria, but I can tell you my experience - I feel better getting things accomplished - I am also a 'doer'.  I am a people person.  Even if people are coming in asking how I'm doing because I have been out of work, I saw PEOPLE!!!  It was a change of scenery from the inside walls of my home..  this was good.  For my psyche.  My soul was happier yesterday.  It felt good, though it was hard.  I dragged my O2 tank into work, my imitrex shots in case (back-up plan), energy drink, made sure I had Everything I could to make myself more comfortable should an attack sneak into work with me, and plugged away.  I had a lot to do.   :-[  It was hard to stay focused, but felt better when it was all done!      ;D

Gonna see if I can repeat Monday!!!  Another day-

Val

You can get busy living between the hits, or get busy dying between them. Val's a perfect example of living between the hits.

There's no joy in option B.

with oxygen i havnt missed a day in the entire cycle, i remeber back when i didnt know what they were and i was eating cafergots like candy, that was hell, thank god i found this site, im pretty confident with the help of these great people you should be able to live a pretty normal life

Good for you, Maria.

I have had this dreaded condition for 18 years, and I have missed work twice because of it - both times having been hospitalized for IV DHE treatments. Other than that, I keep both Amerge and Maxalt in my briefcase, and two E-tanks worth of O2 under my desk.

Notice I don't call it a "dreaded existence" - I have little dreaded interruptions in my wonderful existence. There's a difference.

I've been in law enforcement for 29 years, ch for 31! On cycle I keep an E-tank in my cruisers trunk and imitrex jabs in my pocket. Brew put it best, live life to the fullest between hits and be ready to kick demon a$$ everytime he rears his ugly head! Love your attitude.

Joe

Hi ALL - I too had to quit work - after having CH for 4 years without the diagnosis, I went on disability.  The first thing I noticed was that the attacks got worse.  It seems like they like to creep up and give us something to do if we're too relaxed.  After a year I decided to look for a job to at least get some health insurance again.  I mentioned the fact that I would need to bring in an oxygen tank and that seemed to be the kill switch!  I finally applied for a job without telling them anything and got it in August.  I have been working full time ever since.  My headaches have decided to move into the off hours only, so they are working with me really well.  OK - some nights I might average one hour of sleep, and have to be in at 6:45, but I am determined to make it work.  Once I was in, I could introduce the oxygen and everything else that goes with accommodating me.  It has been great!

Hi, Sylvestar, Maria!
I went through this same thing awhile back. It's purely subjective on the part of the "boss". They have nothing to support that it's unsafe to use in the work place (unless you work in a kitchen with open flame - LOL). You'll have to furnish proof of this of course, and it's on your side, not theirs. Research it, copy it, present it!

sylverstar wrote on Apr 25^th, 2009 at 4:05pm:

Hi ALL - I too had to quit work - after having CH for 4 years without the diagnosis, I went on disability.  The first thing I noticed was that the attacks got worse.  It seems like they like to creep up and give us something to do if we're too relaxed.  After a year I decided to look for a job to at least get some health insurance again.  I mentioned the fact that I would need to bring in an oxygen tank and that seemed to be the kill switch!  I finally applied for a job without telling them anything and got it in August.  I have been working full time ever since.  My headaches have decided to move into the off hours only, so they are working with me really well.  OK - some nights I might average one hour of sleep, and have to be in at 6:45, but I am determined to make it work.  Once I was in, I could introduce the oxygen and everything else that goes with accommodating me.  It has been great!

The beast LIKES it when you relax. It notices you relaxing, and decides to take a big ol' bite out of you.

I'm on disability for my other medical conditions, at first in my cycle yes, the beast WOULD have interrupted work for me, had I been going to it.

At this point? I've been in cycle for almost a year. I take care of my 2 nephews each weekday since January... I do not miss a day, and I treat the hits aggressively when they come. The 02 is more than enough so long as I get on it immidiately.'

Good luck!
pfdan
Mystina

Work work work!  :)

You can spend all day worrying about your next headache and feeling helpless or you can have a really busy and productive day.

I have missed one day this cycle (my second one) but that was because I got my attack just before heading off to work. Otherwise it is going to be business as usual.

I'm OLD and still go to work every day. When the beast decides to visit I hit the O2 and kick his rear and go back to work.

I LIVE between hits (I'm chronic) and don't miss a whole lot of nothin'.

You can give in to the BEAST or you can FIGHT... I have too much to do to let that jerk WIN, so I CHOSE to FIGHT.

And NO, it's NOT easy at times. But if you do it long enough, it gets to be routine and a part of your life. You just don't think about giving in - you just fight automatically. Took me a few years to figure this out, but I'm a slow learner. Think I finally figured out it wasn't going to get better unless I MADE it better. ATTITUDE is everything....

One thing I found is that MENTAL HALLITOSIS (stinkin' thinking) is your enemy. When you make up your mind that the beast is NOT going to win - then you're on the road to LIVING again, but it's got to be YOUR decision.

I was down about as far as a person can be down (Iwouldn't even go out of the house for over a year). But then one day, I CHANGED my attitude and decided I didn't want to live like that any more. It took a lot of doing, but I got new tires on my car (the old ones had dry rotted) and got out and went to the office, cleaned the cobwebs off my desk and said the hell with it - I'm BAAACK! If I get hit - live with it! (Ok, so I went to the kitchen during a hit for a while there, but after a while I just closed my office door and everyone left me alone till it passed  ;) ).

I got involved in local politics and started going to every rally and meeting that was held in our area - even ran for office (that was a hoot). What I'm trying to say is - I CHOSE to get my LIFE back and did a pretty good job of it. There were a lot of people on this MB who helped me thru some really bad days (you know who you are). And NO it wasn't easy, but we got thru them and today, I'm still going strong.

What I'm trying to say (long winded) is that we're all a lot stronger than we realize, but we have to accept that we have a disease known as CH and it ain't going away, so we have to find a way to live with it. Our attitude is the best defense we have against it. No one except another Cher understands what we have - we have to accept that also - the sooner the better. Then learn to live with what we got and make lemonade with the lemons we get thrown.

End of sermon --  :-*

Hugs BD

Good letter, Barbara - I'm old too (57 this year), and I did not have the advantage of this site until just a few weeks ago (after 6 years of CH!), but I knew I had to get my life back - no choice - I have a daughter just starting med school and she is too close to me.  I have to keep things going for her - just my moral support helps her so I need to fight fight fight.

Good for you...

Yep I have optic nerve damage and some days I can't see worth a darn out of my left eye, but the right one still works, so some days I just put a patch over my left eye and tell my grandson that Granny's a pirate (he thinks that's neat). But maybe I should rethink that one right now... ;) with all that's going on in the world.  :-?

Take it one day at a time sweetie and it will work out. Now go kick some Demon rear.....

Hugs BD

definitely A. The headaches are pretty much as bad at work as at home. Your boss will understand and let you find a dark room I am sure. And the stress of not paying your bills is going to make things even worse for you. At least at work you have some distractions.  Fight through it and earn some cheddar.