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Topic: How do you work? (Read 399 times) |
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tinax5
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Ok I am really new to this site. So here it goes, I follow and my husband all round the U.S. (army) and every two years we move. I can't seem to get a job,after just moving again  . I am also in the middle of one of my visits from hell.  I have not had a pain free day since Jan. 19 and it should last another month. I just don't understand how you all get up everyday and go to work. I fight to get up and get the kids to school. I bow to all of you.  Anyways my question is this do any of you receive SSI and how did you do it? I applied five years ago and got tured down. I finally have a wonderfull Dr. and he wants me to apply. He held my husband back from deployment to fight this war we are in. Just thought I would ask.
Thanks
Tina
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Opus
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Re: How do you work?
« Reply #1 on: Sep 15th, 2002, 9:10pm » |
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Working with a CH is actually not too hard. Imitrex seems to work faster during the day for me. Also the stress of work tends to keep the beast at bay. Getting home is definatly a problem. The really hard part is getting up in the morning after a full 2 hours sleep. The only way I see of getting any type of disabilty short of losing a limb is getting a lawyer.
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Charlie
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Re: How do you work?
« Reply #2 on: Sep 16th, 2002, 12:13am » |
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Welcome to our world and we do understand. I work on my own in the collectibles business. I used to work for others in the same field but they seemed to understand. I don't and never did make any money but I'm able to eat.
We know how hard it is to make others understand. The link below is the best thing we've found to explain that these are not really headaches. Give Simon's letter a look as it's meant to show to employers...friends and families too.
We're glad you found us and I think if you stick around, you'll find someting that will help in some fashion.
The best of luck and here is the link:
http://www.ouch-uk.org/ch/note_colleagues.cfm
Charlie
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There is nothing more satisfying than being shot at without result---Winston Churchill
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2late
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Re: How do you work?
« Reply #3 on: Sep 16th, 2002, 6:52pm » |
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i force myself out of bed during a cycle cause i have a good job & i have 4 kid's (you should see my food bill!) i have a bucket truck, when i'm in the air i always have 3 things: safety harness,hardhat & trex injection. oh yeah tools to ;D .........2late
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dentedhead
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How's that?
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Re: How do you work?
« Reply #4 on: Sep 16th, 2002, 9:23pm » |
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Hello people, I am new here too. When I am at work (welder by trade) it seems to level out if I stay busy and I usually make it. Sometimes there are the 20 minute trips to the bathroom sitting on the pot shaking my legs, blowing my nose and smacking my face, but usually I can get away with it. Everywhere I have ever worked I informed everyone around me about my little friend. They might not think much of it at first but when it kicks in, they KNOW I am in pain. I have never had a supervisor or fellow employee who has ever had a problem with it. They have always helped me out, and they know when to leave me alone. I never go home early or call in because of an attack because I will have it weather I am at home or at work.
I started pumping gas at a little filling station on weekends a few months back. Last weekend, I started having an attack so I took a few hits of Stadol. About 20 minutes later they had me in the cooler inside the store, sitting down on a case of vannila coke and people were pumping their own gas. Ten years of "headaches" and I get the worst one of my life at work last weekend. After about an hour I was functionable enough to start working agian.
In short, It was embarassing. My boss was very understanding about it. I refused to go home because I knew it would end and I would be up and running agian.
P.S. It's funny all the different types of "cures" and advice people who don't get these headaches can come up with. I wish I could have a "normal" headache to see what it's like. These people truly have no idea what mine are like, but at least they are trying to help. Can't ask for much more.
Mike
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Karla
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Re: How do you work?
« Reply #5 on: Sep 16th, 2002, 10:57pm » |
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I found working very difficult and concentration impossible at times. Needing to take time off for all my dr. apts. missing work after sleeping a day away after er trips, stadol making me sleep at work, medicine making my mind tired and off task made it impossible for me to work and stay at work. I applied for disability for ch/depression and got it the first time I applied.
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Karla
suffer chronic ch
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echo
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Re: How do you work?
« Reply #6 on: Sep 17th, 2002, 8:39am » |
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Welcome aboard Tina. Sorry to read you are having a rough spell with the beast. For me working with CH has become a unavoidable part of life. Much easier when you have understanding superiors.
Just getting out of bed can be a challenge at times. I don't normally get a CH during work hours. It's the late night dance and the attempt to think in the morning that is the challenge. These little jewels have most definately had a negative impact on my promotional opportunities.
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"If you love something, let it go. If it doesn't come back, hunt it down and kill it".
Proud Dad of a US Marine, and a former Marine turned Police Officer.
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pjeje
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Hi all
Ive been thinking the same thing, about work related issues. I just received a job, having had an interview with supposed pink eye, blowing it off as a joke of some sort so she wouldnt think that I had some disease or was high. I had an attack right after that interview in the parking lot, and was in the ER that night being diagnosed. I swore I was going to get that job, but in the last couple weeks of research, my thoughts have been about working, what to do, should we tell first, or wait until it comes up, warning the employer. Since I am so new to all this, knowing expectations, what could happen, what will happen, its a wait and see game essentially for me personally, having been just diagnosed.
I got the job, I wanted to go back to work, having taken off the last few years, with four teens, [when the cats away, the mice will play] and needed to be home. I dont want anything to happen with the job, but have decided that I wont say anything now, prove myself, probably going into management as soon as they see who is needed where.
Its in the back of my mind about what ifs, but wont deal with them until the time comes, crossing my fingers again that all will work out, and when the time comes, understanding I hope will be the conclusion.
A hug and a smile
Pat
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echo
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Re: How do you work?
« Reply #8 on: Sep 17th, 2002, 10:30am » |
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It amazes me that in a previous post I mentioned that CH's normally don't hit during work.
So then I head to a staff meeting. All is going reasonably smooth and then the beast says:
SURPRISE SMARTASS!! DEAL WITH THIS ONE. Kip 2 to 8 in about 3 minutes. My staff looked at me like I was insane, so I grabbed my brief case and left the room. Went to the car, found my emergency stash of Stadol, snorted, threwup and returned to my staff meeting. Called it to a close quickly. They looked at me like, oh great - our new boss is loosing it already -- perfect!
Getting ready for a meeting with an executive in the next 30 minutes and I have somewhat of a foggy idea what the topic is supposed to be about. Having a rough time figuring out what the hell my name is for that matter.
Thanks for letting me rant!
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"If you love something, let it go. If it doesn't come back, hunt it down and kill it".
Proud Dad of a US Marine, and a former Marine turned Police Officer.
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pjeje
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I thought about that too, having had many begin in the middle of the night, thinking maybe a job wont even be effected. But I also had day time ones. Its amazing how this beast is so different in so many people. Hang in there..we all rant...thank god we can..and we all understand!
A hug and a smile
Pat
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StanTheMan
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Re: How do you work?
« Reply #10 on: Sep 17th, 2002, 11:40am » |
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I visited with my boss about my "condition". I gave him a "crash course" about CH's, etc.
Fortunately, he's very understanding. I also discussed it briefly with a couple of my closer co-workers, just to inform them when I'm going through a cluster cycle and that if I make a "fast exit" to take meds, etc., they'll know why.
Hang in there Tina, and sending a couple of hugs.
StanTheMan
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"All the days of the afflicted are bad, but the cheerful heart has a continual feast." - - - - - Proverbs 15:15
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ave
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I am self-employed, which means I work many more hours than a boss would dare ask of me, LOL 
On the other hand, I get to determine which hours of the day or night. Do I want to work 16 hours at a stretch, sleep 4 and start up again, no problem... So I can usually fit in my work around my attacks. Just is hard on the partner.
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ChristineL
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I work from an office out of my house most of the time. My job is 24/7 365 days but if I need to I can take a break for meds or a nap as long as nothing is happening at that moment. My company is aware of my CH's and is very understanding. I have had one come on during a meeting and was able to go into the bathroom and take an injection of Imitrex. 5 minutes and it was gone and I was back in the meeting.
Chris L
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Marshall_D
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I was actually let go from my dream job, due to Cluster's. I got a promotion into a position I had been fighting for. It was a stressful, and long hours, but the pay was great. Lo & Behold, 1 month into the job I get the worst Cluster Cycle of my life. I'm talking up to 10 a day and no shadows, all eye burners. Well, my new boss thinks it's cause I can't handle the stress. About a month or two after the Cluster's started, Doctor puts me into hospital for DHE Infusions. Boss says this is it and lets me go. Yeah, I got unemployment, tried to fight the the Company's decision, the state I live in (Pennsylvania) isn't much on worker's rights. & the Company says it's a Lay-off. (But of course they'll never call me back). But, what are you going to do.? Had to find a new job, and now I sneak to the bathroom, when I get one. I have no choice.
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