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        Cluster Headache Help and Support >> Getting to Know Ya >> Letter to Employers & Colleagues
        
(Message started by: E-Double on Apr 25^th, 2005, 6:18pm)

Title: Letter to Employers & Colleagues
Post by E-Double on Apr 25^th, 2005, 6:18pm

As well all know it is very difficult to explain what it is we go through....
Many look at us as if there is no way in hell something can be that debilitating.

Here is a letter that you can give your employers, colleagues, professors, fellow students that will explain in very simple language what it is that we go through.
How CH is a misnomer!!

It is known to us as "Simon's Letter" ;)
Simon is a UK CH'er who had the wherewithal to develop this perfect letter.

http://www.ouch-us.org/chgeneral/colleagueletter.htm

Wishing you all Pain Free Days!!!!!!and Nights ;)

Eric

Title: Re: Letter to Employers & Colleagues
Post by Redneck on Apr 25^th, 2005, 10:38pm

And a good letter it is, when this cycle started last Thanksgiving I gave it to everyone in the office and emailed it to all my counterparts around the state. They may not really understand but at least some of them have a better understanding of what is goning on now.

Title: Re: Letter to Employers & Colleagues
Post by LadyLuv on Apr 28^th, 2005, 12:22pm

This is a great letter... and it will come in handy

Peace & Blessings
Lady Luv

Title: Re: Letter to Employers & Colleagues
Post by wifesupporter on Apr 29^th, 2005, 6:57pm

awesome link and letter thanks. My wife is the sufferer and I am thankfull that she is not working at this time so she can try to cope the best way she can however I have a lot of explaning to do at work as to why I am so tired all the time and this will help I am gratefull I work with a bunch of wonderful people who can understand all I have been teaching them about this thing.

Thanks again for bringing this to everyones attention

Steve

Title: Re: Letter to Employers & Colleagues
Post by E-Double on May 2^nd, 2005, 9:15pm

on 05/02/05 at 21:06:04, maffumatt wrote:

The suicide part of the letter isn't that cool to give to your employer. It would be alot better if that was edited out. My employer had issues with that part.

Matt

considering that Dr's throughout the world have called CH "suicide HA" for yrs.....that gets the point across that headache is a misnomer.....

I guess edit it as you deem fit but at the same time your employer should not take issue with any disease that one has.

Stay positive

Title: Re: Letter to Employers & Colleagues
Post by mynm156 on May 4^th, 2005, 7:23pm

Cool Thanks!

Title: Re: Letter to Employers & Colleagues
Post by ArCane on May 11^th, 2005, 12:22pm

on 05/03/05 at 17:46:49, maffumatt wrote:

only speaking from experiance. Anyone that has the safety of others in their hands ( where if you screw up they die kind of safety) may want to consider editing that part out. That is unless you feel unsafe. If you don't feel safe working, i wouldn't risk others safety.

After reading the letter, issue was taken with the fact that if I were to commit suicide at work and others were also hurt, the employer would be held responsible for the others death. After giveing the letter to the employer he has foreknowledge that this is a possibility, and would therefore be held liable, perhaps criminally. Its still a very good letter, it explains alot. It some cases it might cause undue concern.

Why would you hurt or kill others when commiting suicide? Going "postal" has nothing to do with suicide. If you go "postal" you have bigger problems than CH. The subject on suicide in this letter is just letting everyone know just how painful these things really are. Who here hasn't thought about suicide, atleast for a second, during day in-day out kip 9-10 headaches? I know, I have. It isnt a realistic option for me (have to many loved ones) but I have thought about it during an attack.

Title: Re: Letter to Employers & Colleagues
Post by E-Double on May 11^th, 2005, 12:24pm

This post isn't supposed to be a debate. It's there for a resource to all that could use the link.

PF wishes!

Title: Re: Letter to Employers & Colleagues
Post by ArCane on May 11^th, 2005, 12:26pm

on 05/11/05 at 12:24:50, E-Double wrote:

This post isn't supposed to be a debate. It's there for a resource to all that could use the link.

PF wishes!

Sorry bro. Ill shut up now ;;D.

Title: Re: Letter to Employers & Colleagues
Post by Candycane on Jun 1^st, 2005, 8:41pm

Thanks for the great info! :)

Title: Re: Letter to Employers & Colleagues
Post by Jonny on Jun 2^nd, 2005, 5:24pm

Thanks DJ....You Da Man, Dude!!

Title: Re: Letter to Employers & Colleagues
Post by E-Double on Jun 2^nd, 2005, 5:28pm

;;D Thanks DJ ;;D

Title: Re: Letter to Employers & Colleagues
Post by iain_bridge on Jun 3^rd, 2005, 6:13am

What a great letter, not only for employees but anyone you deem close enough to understand this hell that we are all going through.

Thanks it will come in very useful

take care everyone
Iain

Title: Re: Letter to Employers & Colleagues
Post by RClarke54 on Jun 4^th, 2005, 5:10pm

Hello all,

I have been a episodic cluster sufferer for about 10+ yrs now. I recenlty could not have fallen into a cycle in a worse positon. I am talking no car and no job, pretty bad. I recenlty though took this job offer before telling my manager about my ch's. After getting two excruciating attacks at work my boss became curious, and it wasn't until then that I had to tell him about the condition. He then proceeded to tell me that I could not work there anymore because the store could not work around my ch's. What would be anyone elses opinion or advice on how or when I should go for another job at this point?, and if I should tell my next boss about my condition.Email is RClarke54@hotmail.com, just let me know when you can as I am all ears at this point. Thanks.

Title: Re: Letter to Employers & Colleagues
Post by Jonny on Jun 10^th, 2005, 7:14pm

on 06/04/05 at 17:10:30, RClarke54 wrote:

Sue!!...you cant be fired because of a disability

Title: Re: Letter to Employers & Colleagues
Post by Kim Y. on Jun 18^th, 2005, 10:06pm

Quote:

What would be anyone elses opinion or advice on how or when I should go for another job at this point?, and if I should tell my next boss about my condition.Email is RClarke54@hotmail.com, just let me know when you can as I am all ears at this point. Thanks.

They can't fire you for this.....

If you tell them in the interview they will come up with some reason why they couldn't hire you.

Title: Re: Letter to Employers & Colleagues
Post by sean0 on Jun 28^th, 2005, 8:45pm

Excellent letter. This is the first time I have seen the syndrome explained so clearly and succinct.

It will come in handy.

Title: Re: Letter to Employers & Colleagues
Post by Kirk on Jul 7^th, 2005, 8:40pm

Is that letter in a different format someplace? Like a PDF?

Thanks

Title: Re: Letter to Employers & Colleagues
Post by drivin_blind on Jul 19^th, 2005, 2:29pm

What an excellent letter. I am very fortunate to have a G.P. that is a close friend. He spent hours and hours learning everything he could about CH. back in the 80's. He's been a godsend. I've tried to explain to co-workers who are very sympathetic. This hits it on the head. Thank you!! Dick

Title: Re: Letter to Employers & Colleagues
Post by scarmig on Jul 29^th, 2005, 3:28pm

For those who don't have Word, I've htmled a copy onto my website.

http://www.scarmig.com/cluster.html

Feel free to use it, copy it, or link to it, though i make no guarantees on how long it will stay put. :)

Title: Re: Letter to Employers & Colleagues
Post by Jasmyn on Jul 31^st, 2005, 3:18am

Great letter!

Title: Re: Letter to Employers & Colleagues
Post by marlinsfan on Aug 18^th, 2005, 8:55am

So, in my company we have several employee Networks. One is the DAN, which is the network for disabled employees.

Yesterday I went through the anti-harrassment training, and in the ADA (americans with disabilities act) there is mention of severe migraines but not CH.

I approached the folks at DAN and they have asked me to write an article on CH, and I was thinking of using a shortened version of this letter.

I work for a large company, there are 4000 employees in my building alone.

Does anyone have any issues with this?

I will include the last sentence:

"Original draft of this letter written by Simon Bower for http://www.clusterheadaches.org.uk"

Title: Re: Letter to Employers & Colleagues
Post by Simon on Aug 30^th, 2005, 2:11pm

All I've ever asked was that my name is on it! Just a little bit of conceit on my part. :) Anyone welcome to use it, and put it on websites. Good to hear that it is still having some use.

Might be worth noting that it has been translated into American.... :)

Baa

Title: Re: Letter to Employers & Colleagues
Post by E-Double on Aug 30^th, 2005, 2:49pm

Thank you always Simon! :)

Title: Re: Letter to Employers & Colleagues
Post by bradboy on Aug 31^st, 2005, 3:27pm

Thanks Eric. You have been such a big help to me. I just sent this to my boss and a colleague and hopefully it will help them understand as I've been forced to work from home nearly 2 weeks now.

I also called the New England Center for HeadAches as you suggested. Unfortunately they only accept 2 types of insurance and mine (blue cross blue shield) isn't one of them. I need to call my insurance company to see if they will reimburse me the $590 consulation fee and $150 visit thereafter.

Title: Re: Letter to Employers & Colleagues
Post by BlueMeanie on Oct 5^th, 2005, 6:15pm

Definately an excellent letter for employers, family and friends. Ever since I showed the letter to my boss, she would ask me everyday if I'm getting shadows or got hit at night etc. and wanted all the details about CH's.

She now only asks once in awhile if my cycle started yet. Luckily for me, I keep saying not yet. :)

Title: Re: Letter to Employers & Colleagues
Post by jon019 on Oct 5^th, 2005, 10:06pm

Quote Simon

All I've ever asked was that my name is on it! Just a little bit of conceit on my part. :) Anyone welcome to use it, and put it on websites. Good to hear that it is still having some use.

Might be worth noting that it has been translated into American.... :)

Baa

Hi Simon,

Your name! dang, if I had a first born he'd be named after YOU! It is a wonderful letter.

I have not yet shown it to friends and coworkers but I'm getting closer. This is such an self focusing condition that I have a hard time including others. The ONLY ones that understand (at least it seems to me) are on this list. It's a big leap to try to share the pain because of the fear of how it will be interpreted by others.

I've heard every one of the last part of your letter. May I have the courage to at least try.

Wondered who you were. Delighted to see your post. Many thanks.

jon019

Title: Re: Letter to Employers & Colleagues
Post by jason1212 on Oct 26^th, 2005, 2:20pm

Hey Eric, thanks for posting this. I've needed this for a very long time.

-Jason

Title: Re: Letter to Employers & Colleagues
Post by lionsound on Nov 26^th, 2005, 9:21am

I am pregnant :) and I gave a copy of this letter to my obstetrician. My OB read the letter and liked it a lot and also emailed alll the other docs in the practice about me. She put in my file so all the docs in the practice get a look at it if they treat me and it goes with my info over to the hospital for when I deliver in late December.

-lionsound

Title: Re: Letter to Employers & Colleagues
Post by tanyae on Nov 26^th, 2005, 9:45am

Where can I find "Simon's Letter"?

Title: Re: Letter to Employers & Colleagues
Post by E-Double on Nov 26^th, 2005, 9:52am

on 11/26/05 at 09:45:10, tanyae wrote:

Where can I find "Simon's Letter"?

on page 1 hit the hyperlink.

While you are there...Join OUCH!

Title: Re: Letter to Employers & Colleagues
Post by tanyae on Nov 26^th, 2005, 10:01pm

Thanks, I did sign up while there!
Great letter like you all said.

Title: Re: Letter to Employers & Colleagues
Post by Delts on Dec 1^st, 2005, 1:55am

Simon that is the best explanation of CH i have heard every time i try and explain i cannot convey the seriousness of attacks, as soon as people hear headache they switch off and seem to think a paracetamol will do the job >:( Nice one mate ;)

Title: Re: Letter to Employers & Colleagues
Post by chewy on Jan 21^st, 2006, 7:47am

Quote:

Sue!!...you cant be fired because of a disability

Its not always that cut and dry. Upon hire an amployer may legaly ask if you have any health conditions that may effect your job performance. How did you answer that question?

Do you have documentation of your condition on file with human resources?

How many employees does your company have.

An employer is required to act with due diligence but so is the employee.

Title: Re: Letter to Employers & Colleagues
Post by mt240sx on Feb 7^th, 2006, 9:28am

Thank you for this link i sent it to my friend's, co-workers, and boss it has helped them to understand that it is not a migraine or tension headache like they have had in the past.

Title: Re: Letter to Employers & Colleagues
Post by dacluster on Feb 14^th, 2006, 10:39am

I like this letter! It just about hits the nail on the thumb! As funny as this may sound, I have been shot before, and I would still rather be shot than experience another CH! I am not kidding. At least when you are in shock, you don't feel as much! If it would get rid of any an all future headaches, don't miss!

Title: Re: Letter to Employers & Colleagues
Post by dacluster on Feb 14^th, 2006, 10:49am

Addendum:
...by shot again, I mean I would rather survive the incident so that I could relish the feeling of never experiencing the MONSTER again! I consider them a fair trade!

Title: Re: Letter to Employers & Colleagues
Post by Dragnlance on Feb 14^th, 2006, 10:51am

Print this letter off and give it to those that need it. You will be surprised at how well it helps.

Title: Re: Letter to Employers & Colleagues
Post by Garys_Girl on Apr 4^th, 2006, 7:03pm

What a great letter! Our friends have begun to think we're using "migraines" (didn't know until a few days ago when I found this site that it was Cluster Headaches) as an excuse to break weekend dates. Gary started getting CH several times a day - always in the evening - at the beginning of March. We've had to cancel plans each weekend as his pain just keeps on rolling..... this letter should really help!

Thank you Simon!

Title: Re: Letter to Employers & Colleagues
Post by Garys_Girl on Apr 5^th, 2006, 2:30pm

On second thought - I would change just one thing in the letter. At the end it mentions that CH sufferers may exhibit tiredness, irritability, etc. I would simply change "tiredness" to "exhaustion." Gary's had on average 2-3 hours of sleep per night, often with completely sleepless nights, and only a few naps here and there (which he could never do if we worked in an office 5 days a week) for over a month. He's not just tired, and he's not just "bone weary;" he's completely exhausted.

Title: Re: Letter to Employers & Colleagues
Post by pingu1981 on Aug 4^th, 2006, 6:52am

Oh my word!!! That is SUCH a good letter!!! I've got a formal meeting coming up with my area manager where I know that CH is going to come up because they don't beleive I'm ill. I'm SO taking a copy with me!! [smiley=thumbsup.gif]

Thanks alot!!!
Michelle

Title: Re: Letter to Employers & Colleagues
Post by LeLimey on Aug 4^th, 2006, 7:07am

Michelle check your email!
I've sent you some other stuff
love
Helen

Title: Re: Letter to Employers & Colleagues
Post by BMoneeTheMoneeMan on Aug 15^th, 2006, 8:12pm

I am not the most computer savvy person, but I would like to send someone this letter in an email.
I havent been able to finger out how to save it as a PDF so that I can just attach it to an email and send it.
Can someone tell me how I can do that?

Thanks a lot.
BMonee

Title: Re: Letter to Employers & Colleagues
Post by Jonny on Aug 15^th, 2006, 8:30pm

Right click "PDF Version" and then click "Save as target"

Title: Re: Letter to Employers & Colleagues
Post by BMoneeTheMoneeMan on Aug 15^th, 2006, 9:32pm

Thanks, Bro.
email is out the door

Title: Re: Letter to Employers & Colleagues
Post by aubmari on Aug 28^th, 2006, 6:35pm

Tthat is a really great letter I wish that I had only know about this web site and had the letter when I had my last round of them ('03). My boss thought that I was one of those "Hypocondriac slackers" that just didn't feel like coming into work!!!!! It would have been nice to be able to have help convincing him that it really is severe. Thanks all for your info. ;)

Title: Re: Letter to Employers & Colleagues
Post by psuet on Oct 18^th, 2006, 10:29pm

This letter is absolutely perfect. I have had the unfortunate opportunity to lose a good job from ch. I had doctors notes and everthing, but like it says if you've never had any, you can never understand. I am printing and copying this to give to my instructors, fiancee and especially my mother. She seems to think I am faking and I just need to come out of my room and do some yard work or something. Ha Ha Ha.....

Title: Re: Letter to Employers & Colleagues
Post by winshots on Oct 19^th, 2006, 10:18am

Thank you for this letter, it says everything I'm trying to explain to everybody since I am no longer trying to hide my CH's to the rest of the world.
I would like to try to translate it into the Dutch language, if you permit.
(Maybe this has already been done? Tell me!)
Please inform me if you are OK with this and how to have the translation checked before publishing it (I prefer the PDF format).

Keep it up! :)

Title: Re: Letter to Employers & Colleagues
Post by Lawnmoman on Jan 24^th, 2007, 11:19pm

Hello all
I am new to the site and i dont feel so alone anymore."as corney as that sounds" Ive suffered for 26 years with the longest remission being a little over a year. Coincidentaly about six months after quitting smoking. Long enough i thought i was cured. I read the letter through tears. I think we all have felt somewhat like this before but I have never been able to speak so eloquently. I have forwarded this to close friends and family in hopes they might forgive anything i may have done in the past, present or future. THANKS!
CLUSTER FREE FOR FIVE HOURS AND COUNTING!

Title: Re: Letter to Employers & Colleagues
Post by MathenyMan on Mar 2^nd, 2007, 6:46am

Just to reiterate once again what you have all said, this was a great letter. I have, since reading it, posted it on my myspace for all to read. It's perfect(for myspace). Thats the one place where all the people I care about, reguardless of age, sex, or location can be contacted. Since I've posted it there, now I don't have to tell the weird story of my, "bad migraines" as most people like to call it, over and over again. I just annonced it in a bulletin and let people read it in their own time. The whole suicidal thing, eh. I wish I could deny it. But, you all know what a 10 on the Kip scale is like. What I should do is get some gloves to prevent more holes in the walls and/or broken knuckles. I'm not so big on head banging, I just get really frustrated. I always get the feeling if I hit my head hard enough during one I might die or something. While that wouldnt sound so bad most of the time, one, I'm a "girly man" if you will, two, I use loved ones to keep me calm. Meaning, if I lay down next to mom, I know I wont get to crazy, for her safety. Well...see ya. Thanks again Simon

Title: Re: Letter to Employers & Colleagues
Post by Rosybabe on Mar 7^th, 2007, 1:33pm

Good, Good, Good!!

I could not find better words to describe it..

I already sent it to all my family and close friends..

Thanks a lot for making it available and in Spanish too!!!

Title: Re: Letter to Employers & Colleagues
Post by Zeitgeist on Apr 15^th, 2007, 6:14am

Sorry if this is aready reported. The URL to Michigan Head/Pain & Neurological Institute ad the end of the letter is dead.

The new URL is http://www.mhni.com/clusterheadaches.aspx

Title: Re: Letter to Employers & Colleagues
Post by neetnut on May 22^nd, 2007, 1:44am

I love that letter!!

Title: Re: Letter to Employers & Colleagues
Post by MR_FLOOR on Jul 2^nd, 2007, 4:45am

Thats what I call in a nut shell.

Dave

Title: Re: Letter to Employers & Colleagues
Post by southwalessunshine on Jul 9^th, 2007, 3:21pm

This is an excellant letter. i've never really been able to put an attack into words. My partner has seen me at my worst but I often freeze alittle when i'm aware of him being in the room. Now i can get him to read this and it should help him out. he really is understanding but you can't totally understand if you're a non sufferer can you? Thanks x ;)

Title: Re: Letter to Employers & Colleagues
Post by assaultme on Aug 25^th, 2007, 9:52pm

Hmmm, I see there are those who have considered the very thing I had to deal with. That is your personal responsibility to your employer. I came here a few days ago after being mis-informed about CH. I was told there is absolutely nothing that can be done to control the situation. I was in a panic...absolutely. After I got educated by some helpful members, I know it will be no problem to save my job.
Everyone thinks differently and has a different job and ability to work around this at work. My deal was that I have a responsibility to my fellow workers and company to run my crew as efficiently as before and safely. Any decent company who values you as a good and profit-making employee should be able to work with you on it. I was torn as to how to approach my employer with this. Please don't think I am bragging, I promise you I am not. But I'm very good at what I do. My employer has come to expect my very best every day. I try my level best to provide them with my best work possible. I work with a great bunch of guys and we rely on each other as a team to work profitably and safely. When you use a crane or lifting device to lift tons of metal, you must have a clear head and look out for your partners. It ain't brain surgery, but you can kill someone if you make a mistake. To me, the important part was to let my employer know that I can control this condition where I can function likely as good as before. I admittedly know very little about CH or medical stuff. After the helpful people here clued me in, I am convinced I can do this. My employer wouldn't be afraid about the "suicidal" comment cause they know I'll never snap on other work partners or do anything rash to jeopardize the safety of others. My buddy at work has cancer and he does like me, never lets others suffer because of him. It is just what you must do because others have a right to be safe & work with someone who has it together.
I don't have to tell you how confusing it is at first when you think you will be compromised at work. But the people here are assuring me that it is something that can be controlled well enough to not be a deal-breaker so to speak.
The suicide thing may frighten other employers tho. These days with people becoming angry at work and harming others, it is a big deal. Our safety meetings actually cover workplace violence etc. It's just something the individual would have to ponder when alerting the employer.
But it's a great letter. I have gone over most of this with my employer, but will likely present them with the letter to give them a better understanding of how things work.
Thanks for the info. fellow members.
Cheers, Dave

Title: Re: Letter to Employers & Colleagues
Post by assaultme on Aug 25^th, 2007, 10:04pm

I'm sorry...I forgot to say that what I just wrote is only my small experience with this CH condition. Others here may have a very different situation or much worse problem with it.
I know less than anyone here about this CH thing.
Regardless, I sincerely hope what I said can help someone somehow.
Regards, Dave

Title: Re: Letter to Employers & Colleagues
Post by merchant on Sep 6^th, 2007, 6:06am

Unbelievable. I was literally crying as I read this letter. Thank you so much for putting into words what I've been going through most of my life. I try to act so happy and uneffected by this every day to spare my wife. She sees me daily and sees the pain whether I hide it or not... but it's easy to joke off the level of severity. I think I may send this to her and maybe a couple others.

I'm hesitant only because there's kind of an unspoken understanding that she knows I'm in pain, but it's comforting to her/us that I'm not in THAT much pain. I am, though, and hopefully this letter will give her better insight for all the things I try to protect her from.

I've been to specialists in many places, and many have tried to treat it as migraine and find a quick fix... but that's always short-lived and treatment comes back to CH, however unsuccessful.

It's definitely something you live with and get through it. When people say, like in your letter, "Oh, my aunt has them and she needs to lay down for the entire day in the dark"... I'm thinking... try doing that for 9 months! and do it without sleeping because you're writhing around in pain!

But, of course, you smile and nod because they have good intentions. I would never seriously consider killing myself... not even close... but "in the moment" that's a frequent thought, only b/c there is no answer in the distance, and life surely wasn't meant to be lived like that... but eventually you come back to normalcy and find a little moment of clarity.

Being so bad, for so long, just teaches you to appreciate the good times that much more... you have to stay positive!

I worked a week shy of 12 months for a major cable company in the area. I received top sales awards every month I was there, literally. I was their top performer, team lead and trainer... received employee of the month and employ of the quarter for the entire region. On the technicality of attendance, I could no longer work for them despite my direct bosses wanting to keep me. It was an HR issue. I had no idea about this letter. Since then, I lost a sales job and was literally told, "Everybody LOVES the work you've done the past few months, but we need you to not come in on Monday, get your health in check, and then come back to the company and reapply. We would love to have you back when you get this figured out." I couldn't believe it.

I fear more and more for my marriage every day as she is 1,000 time supportive, but I fear is at the point where her family is saying "see, I told you he'll always be sick"... and I don't want that to win her over. I need to find a way to hold a job, and hopefully this letter helps going forward. Right now, I'm lost and clueless, and just dumbfounded that exceptions can't be made for top job performers.

Thanks again for this letter! :D

Title: Re: Letter to Employers & Colleagues
Post by littlefoot on Sep 7^th, 2007, 2:26pm

This is for Merchant. You might want to check into the Americans w/ Disability Act aka ADA laws. I don't believe you can be let go, if you are performing the "essential functions" of your job, and essential does not include being a "top performer".

I worked as a vocational rehabilitation counselor for 15 years and saw/heard of many law suits that were won. I doubt if you want to work for that employer anymore, but you may get a nice little settlement out of it and teach them a lesson on disability rights.

There are some really great ADA lawyers out there. I would contact one and see what they have to say.

Best of luck,
littlefoot

Title: Re: Letter to Employers & Colleagues
Post by merchant on Sep 7^th, 2007, 3:25pm

on 09/07/07 at 14:26:41, littlefoot wrote:

You might want to check into the Americans w/ Disability Act aka ADA laws.

I hadn't thought about this... wouldn't I need to be registered somewhere as Disabled? The only time I've ever been registered as Disabled was in college, and that was with the University, not the government...

I remember thinking it was awfully fishy that JUST before my 12 months, when they told me the FLMA would kick in and nobody would have to worry about anything anymore... it ended. Very frustrating.

I have a friend whose interested in that kind of law... I will ask him what he thinks and go from there :) Hadn't crossed my mind but I'm curious now if there's even a case for it. May be good to know going into the next employer.

Title: Re: Letter to Employers & Colleagues
Post by assaultme on Sep 8^th, 2007, 2:20pm

on 09/06/07 at 06:06:54, merchant wrote:

I worked a week shy of 12 months for a major cable company in the area. I received top sales awards every month I was there, literally. I was their top performer, team lead and trainer... received employee of the month and employ of the quarter for the entire region. On the technicality of attendance, I could no longer work for them despite my direct bosses wanting to keep me. It was an HR issue. I had no idea about this letter. Since then, I lost a sales job and was literally told, "Everybody LOVES the work you've done the past few months, but we need you to not come in on Monday, get your health in check, and then come back to the company and reapply. We would love to have you back when you get this figured out." I couldn't believe it.

:D

Merchant:
I read what you say and quite frankly, it reads like something I sat here & wrote myself. I'm very sorry to hear the CH has cost you a job or two. I came here a few weeks ago and I was absolutely frantic. My job may be in danger. We define ourselves often by our work. I absolutely know what it is like to fear losing identity or wasting skills.

You have a great many skills, I know the disgust associated with the fear of never being able to share those skills. It's not some narcissistic belief that the world will collapse without you. It's all about the disgust associated with working your butt off, only to have some stupid blood vessels destroy everything you built.

The people here humble me in the way they sincerely want to help. I got lucky and things are under control beyond my wildest expectations.....mostly thanks to those here.

What you wrote hit me like a ball bat upside my head.
I cant help all that much and it may not mean much....but I get it and am pulling for you.
Cheers & good luck.
Dave

Title: Re: Letter to Employers & Colleagues
Post by mdorr on Oct 9^th, 2007, 9:28pm

What a great letter. Thank you so much for your effort. I have already forwarded it to many friends and loved ones

Title: Re: Letter to Employers & Colleagues
Post by billlmack on Jan 12^th, 2008, 1:21am

I've had this letter for a while. I gave it to my employer and i've mentioned CHs to him a few times, but as only we know no one will or can ever understand pain of that level so i don't really go into detail. This letter sums it up perfectly.
As for our friends that lost their jobs because of the beast; a decent lawyer should be able to bring some awareness to your plite, just be aware of employers rights.

Title: Re: Letter to Employers & Colleagues
Post by Stinger on Jan 21^st, 2008, 7:03pm

I wish I had this letter when I was working. It was so hard to explain to my boss and everyone else that if I got up and walked out on a meeting it was because of my CH. Looking back, I don't know how I made it through my cycles with the headaches and heavy drugs. Now that I am retired, I guess I can just pace my house and yard. I printed a copy of the letter for my wife.

Title: Re: Letter to Employers & Colleagues
Post by Lebowski on Jan 23^rd, 2008, 2:47am

Love this letter!! Printing it out at work right now and printing one for my wife.

Title: Re: Letter to Employers & Colleagues
Post by outofcommission on Feb 12^th, 2008, 3:02am

on 06/10/05 at 19:14:54, Jonny wrote:

Sue!!...you cant be fired because of a disability

no but they can fire you for other stupid shit. i took a previous employer to court and won. i was eating cheese and crackers by candlelight three months later but he didn't one over on me. and i worked for this mans father for four years. i guess my headaches were inconvenient for him. thats ok though. now i'm doing something thats way more enjoyable..... and i get cruise around and meet some of you guys. ;)

johnny

Title: Re: Letter to Employers & Colleagues
Post by outofcommission on Feb 12^th, 2008, 3:18am

that letter been around for a while too hasn't it? anybody know how old that letter is? thats a pretty good description too.

Title: Re: Letter to Employers & Colleagues
Post by DennisM1045 on Feb 13^th, 2008, 6:52am

I love that letter and used it at the last place I worked and at my current job. Initially I was using O2 in an HR office but that had its drawbacks. So after deciding to use O2 in my office I wrote this to the folks that work in cubes right around me. The response I got was 100% supportive.

-------------------------------------------------------------------

I’m writing to let you know about something that I’ve been dealing with for a long time – 12 years to be exact. Cluster Headaches are a rare and very painful neurological condition. Attacks come in clusters (hence the name) and for me they occur twice a year in cycles that last anywhere from 8 to 12 weeks. They visit me in late winter and again in late summer. While most of my attacks come at night I do get them during the day when my cycle is peaking.

During an attack I experience a searing, burning pain that centers behind my right eye. When an attack comes on, it does so quickly without more than a few minutes warning. During an attack it is impossible for me to communicate coherently with anyone. I’ll be ok. There is nothing you can do to help. Just leave me to deal with it and you’ll hear the sound of my keyboard again in no time.

The best form of treatment for aborting a Cluster Headache is Oxygen therapy and energy drinks. It usually takes one or two treatments of 15 minutes each to abort the attack. When that fails I have Imitrex Injections to fall back on. I much prefer the Oxygen as it has far fewer side effects. Last cycle (August - November) I kept an Oxygen tank down in HR and would use it there in a spare office. However there were a couple of problems with this strategy. 1) HR isn’t open early in the morning or after hours and on more than one occasion I was locked out when I needed to get in. 2) Delaying treatment while I fetch my backpack and make the walk down there also makes my pain worse and last longer.

So this cycle, with your understanding and acceptance, I would like to begin using Oxygen here in my office. I’ll keep the tank in a file cabinet and will only need to drag it out when an attack comes on. I didn’t want to begin using it without giving my you a heads up on what I’m doing and why. So don’t be surprised if you hear the sound of Darth Vader or the clanking of my cylinder and regulator as I piece the rig together. I promise to be as quiet as possible.

Please feel free to come by and ask any questions you may still have. Also, you can read more about this condition at www.ouch-us.org and www.clusterheadaches.com.

-Dennis-

Title: Re: Letter to Employers & Colleagues
Post by C19M82S on Feb 14^th, 2008, 7:57pm

Ok, I am new to the board first of all. I am a 25 year old female from Louisiana and was diagnosed with cluters about 3 months ago. I was in the hospital for a week and then placed on short term diability for 6 months while the doctors tried to figure this all out. I have just returned to work about three weeks ago, and I love the letter because it is so informative. Here is my problem: I have several co-workers who know nothing about clusters, and have diarrhea of the mouth (snide remarks about me leaving early one day or they come to work when they have a "little headache"). I have presented them with the letter and their response is they don't care to know anything about them, but the don't seem to understand where I am coming from. Does anyone have anymore suggestions on how to handle these people? Thanks in advance for any help!

Title: Re: Letter to Employers & Colleagues
Post by outofcommission on Feb 15^th, 2008, 3:42am

on 02/14/08 at 19:57:18, C19M82S wrote:

i remember going up to Michigan with two other guys to do a tile job. it was a screaming ride. when i was working and physical, the beast stayed away. when we went back to the motel room is when i got hit. the crew leader made me get my own room and my boss through a fit. all these guys had seen me during a peek attack. it's not like they didn't believe me, i was a nuisance. this is same company that fired me and i took to court. if your coworkers can't except your condition, you have done everything you can to explain it to them. beyond that worry about yourself. be selfish. after all it's your head and you are the one in extreme pain and you have enough to worry about.
i tried really hard not to cuss. this ex employer is a sore subject with me.

Title: Re: Letter to Employers & Colleagues
Post by KatzPurr on Mar 26^th, 2008, 9:10pm

I couldn't have written it better myself and have already sent the letter to several family members and friends.

Title: Re: Letter to Employers & Colleagues
Post by tnpruby on May 16^th, 2008, 12:32am

>:(
Having problem Downloading :-/, Can someone send it to me email? tnpruby@aol.com

Title: Re: Letter to Employers & Colleagues
Post by debOUCH on May 16^th, 2008, 11:31pm

ck ur emails..................