Posted by Carl D (188.8.131.52) on March 02, 2001 at 00:05:49:
In Reply to: chronic cluster and disability posted by Morgan on March 01, 2001 at 20:28:57:
The problem with being a CHead and having Cluster Headaches is, it is not widely recognized as a serious, debilitating illness. However, we are working on changing that.
You stated that you are chronic. How many years have you had CH, and how many have you been chronic? Also, How many jobs have you lost due to CH? How does the CH affect your everyday life?
These are important questions that can affect and determine the inevitable outcome for yourself.
You stated you applied once, and were denied. You have to file AGAIN within the timeframe specified, (I believe 60-90 days from the time of your notification of Rejection). This is a formality, believe it or not, and you will be rejected both the 1st and 2nd time; but do not despair...
The third time, you have the right to appear before an Administrative Law Judge who will hear your case. It is VITAL that you obtain any and all medical records significant to your CH's. If you have a doctor who supports you, that is a bigger plus. If you do not, all is not lost (as I still did not have a good doc at the time I received). It is important that you find an attorney who "does not collect unless you win". Such an attorney will not require a retainer fee, and you have nothing to lose - but if they lose your case, they have nothing to gain.
Also, if you have lost a job, and can obtain a letter from a former employer who was sympathetic, but had to let you go due to the CH interfereing with your work (I know that is a toughie), that might be helpful. Also, testimonial letters obtained from individuals (who are not related to you: Business associates, Counselors, etc.) that know you, can be very helpful. Also, testimonial letters from those who have witnessed you during an attack can be helpful. When my court date drew near, many from the board wrote letters in my support, but they were not submitted, as they were from persons who did not know me directly, and had never witnessed one of my attacks themselves. The important thing you have to do is this: prove not only you have CH - but how debilitating it has been in your everyday living.
I have come a long ways, and still have miles to go. I received my Disability/SSI back in April of last year, but am still being bondaged in RED TAPE from the State Aid - (this is important, as this is where you obtain your Medicaid for Doctor visits and Medicinal help). At many times I have felt like throwing in the towel - no, taking the towel and hanging myself with it!!!
The important thing to remember is this: you are a citizen. You deserve the benefits therefore. Chronicle every moment of your CH history with medical documentation and also a chronicle of how it affects your daily life.
If I can help in any other way, let me know. If you have information you wish to keep off of this board, just email me at the below address. I will do anything I can to help.
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