Hi everyone been awhile since i last visited, I am in the process of filing for disability. I was turned down and was told that if I could provide some proof that other people were on disability for clusters it would help my case. so if anyone could help by either sending me an email with your name and the doctor that helped I would really appreciate it. also any suggestions from those who have been down this road would also help as the government scares me more than the frickin headaches. Plz email info to wraithtech@comcast.net

Thanks and I pray you all remain headache free

Short term, long term or permanent?  ST/LT disability have more to do with your HR department and your doctor properly filling out paperwork than anything, and though it can be frustrating, should be approved so long as your doctor agrees that it's necessary.  Permanent disability is another thing.  It's an argument with the government that your condition prevents you, permanently, from being able to function enough to sustain your living through work, and as such qualify to get financial and health care assistance.  This can be a mess, and I've read about it both being successful and denied.  Your doctor might be able to find some historical data of people that have been approved by it, as will a Google search.

It wouldn't be a bad idea to have a collection of information here, though, for easy access to members.

I for one will be VERY interested to see where this thread goes.  I would love to see a good pile of legalish info build up on this topic;  there's so many variations of CH and different states/countries deal with it in different ways...

I for one am having the darndest time just getting through school because there's no official system in place at my university to deal with CH in a disability-like fashion  (not like ADD or learning disabilities.)

I'm just reading and catching up on different topics so please bear with me.

This past weekend, I spoke with my cousin who for CalPERS (CA Public Employees Retirement).  I told her about my CH diagnosis and she said she knew about CHs.  She says she gets disability claims for CH sufferers.  We didn't get a chance to finish our conversation, but I plan to call her and will ask how those cases are handled.

I have been on permanent Social Security Disability since 1992.   I don't remember the name of my Nuro at the time.  I do know he was at the University of Washington medical center.  I could probably dig up the name of my lawyer if you want.



It took over a year and a half to get it approved and I ended up in front of a judge by the end.  I don't remember much of that time I was getting 6-8 HA a day with nothing but O2.  My family pretty much took charge of getting me on it. That session ultimately lasted about 2 years.  Maybe the sight of me as a basket case lovingly touching my O2 tank clinched it.



If you do it, understand it's pretty much a trap.  When I was in remission I called to find out if I could work and what the rules were.  I was told that if I worked for more than a few months I would be taken off disability and would have to start over from scratch when the clusters came back.  I called back several times and was given a different answer on the number of months each time.  One person said the re-application would be expedited.  I have no idea what the real rules are and I don't think any of them did either. Scared me enough that I don't even try to get a job when I'm not in session.  Not that that has been an issue lately...  I'm past 6 years in this session now... 



I'm about to move right now... so I have lots of stuff packed.  It might take me a while to find any of the info.  (my files are also a mess)



PFD All

Corax