My name is Nichole and my husband Jay is a 15 yr CH survivor. He has been chronic for the last 5 years with a PF day maybe once a month. He has lost many jobs because of this and is currently going to loose yet another one. It is all due to the fact that his employers say it is a violation to have his oxygen tank( which happens to be the ONLY thing to work for him ) at work and he is constantly sent home..... you all know what I am talking about. He is hit anywhere from 1 - 5 times a day every day, he dose not want to be on disability nor will any of his DRs put him there.  WHAT do we do ? dose anyone have any suggestions.... any knowledge of the americans with disabilities act ? I cant fine it anywhere.  PLEASE  HELP !!!!    

Your Supporter always,
Nichole  ;)

That sucks! I have lost several jobs from being chronic also.

Can he keep the O2 in the car maybe? :)

We as CH'ers should have some ADA backup on this!

Roland.

Edit to add ADA covers migraine but not CH induced cranial implosion. ;)

Jay dose keep the O2 in the car but they send him home because he is going  every 15-45 minutes  to the car  and they say it is disruptive to the work environment.  It is an ongoing miserable cycle. The doctors want him to work and the employer says her should be on disability.... how in the hell can you win ?          you can't.

Thanks Roland...... I am looking into how we can get this added as a part of the ADA.

jaysbiggestfan wrote on Nov 4^th, 2008 at 4:23pm:

Jay dose keep the O2 in the car but they send him home because he is going  every 15-45 minutes  to the car

That's why I don't use 02 unless I'm home. Injections don't work for him ? I can last close to 8 hours between hits which gets me through the workday with a shot. I'm like him with the 02, only get 45 minutes to 2 hours which ends up being 5-6 hits a day, vice 2 hits a day.

Good luck and hope he finds relief.

ADA/FMLA may be some help. Sounds like you need a disability lawyer.
If I had a diagnosis from a neuro that was Chronic CPH. I would have a lawyer and a disability check.
Call Binder and Binder.
That is unreasonable for an employer to deny a simple bottle of 02. There perhaps are other factors involved.
all the best
the bb

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I am apalled...a simple O2 tank and they can't accomodate??? What the hell??? What kind of business is this? If they want to put him on disability, go for it...screw 'em. Sorry, but this is pissing me off. Find a doc (and maybe a lawyer) to sign the papers and throw 'em on the knotheads desk...sigh...

Must add, and I am now fully realizing how lucky I am. At my job, they recognize that when Jon hauls in an O2 tank, he is in pain and needs our support...NEVER been an issue (well, except for the one coworker who thought it hilarious..it has been 15 yrs now and I'm just getting around to thinking about forgiving him)...

Nichole, you keep coming back...cuz we got your back...

Best,

Jon

  I my have some advise for you but I would need more info,  if you want pm me a phone# and I'll give you a call.  
  I am 36 years old and in no way want to retire just yet but my employer for the past ten years would not make any accomidations for me not o2 in the building and shots while I was in the office and I had approved fmla for ch.  I am currently on medical leave(no pay) but I will be reimbursed when every thing goes through and either they will accomidate or they will retire me.  I dont know if I can help but I will try.
   Phil 8-)

nicole, i stronly recomend you spend some time looking around the ouch website. if i was on  a different computer i would cut and post a link.  to deny jay of o2 is simply inhuman and cruel. i don't understand why he cant have o2 at work. i ama truck driver and i can keep it in the cab as long as it's sucured and tied down. i've been though security checks at ports and ii tell them about my contition and theu say ok. anyways check out ouch.com

Hi Nichole

 Sounds like it might be too late, but you might copy the "Letter  to Employers" (and friends). . . . and take several copies to work . . . give them to co-workers AND the boss and seek an answer on WHY an 02 tank would be disruptive.

 Can he make them understand that if he had the tank at hand, and could use same at the first sign of attack, with minimal or no (depending on what his job is) interruption in work . . . AND . . . by the time he knows it's a real attack (and not a shadow), leaves his station, gets to the car huffs and rocks, etc. . . His pain (Kip) level and duration of attack has increased considerably   If they can understand this and have a clear understanding of what's happening . . . might help.  Take them a copy of our Kip scale (link on left).

 Is he taking any preventive meds?  If neither of you (or his doc) has done much research in the last few years . . . there ARE preventatives out there that work for many.  We'd like to know what other meds he's tried.  Success's and failures.  

 Like him, I was having multiple day (and night) hits when I came here (2/02) . . . This place gave me my life back and some control over the beast.  One of my favorite motto's on this board is, Nothing works for everyone, but SOMETHING works for everyone" . . . and here, among folks who truly know his pain, you have a very good chance of finding the "something" that works for him.

 Thanks for being a supporter,

   Be Safe,    PFDANs

      Richard

Power often lies about what is possible or not because evoking "the law" carriers authority.

Explore the ADA site and see if you can find any protection:

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i have fmla protection.
but o2 at work would be a real issue so i use shots. being chronic i realize its only a matter of time before disability raises it head.