Discussion in 'Fibromyalgia Main Forum' started by saintrose, Sep 17, 2006.

  1. saintrose

    saintrose New Member


    I about reached the end of my rope this week. I was in bed and could not even get up to brush my teeth. I have been denied for the 2nd time by SS, because I was too sick to work the necessary quarters. They even got the paperwork wrong, and listed the wrong date for when I began being treated by my physician > listing the date as later than was clearly typewritten on the letter from my doctor. Those of us who are afflicted with this malady knows the devastation it wreaks in your life. I have lived it for years. I attempted to get some type of grant for help, but I do not know how to do it - and cannont summon the energy to pursue it. I have good days when I can function like a real human being - and then I crash, with severe headaches, the "death fatigue" as I call it..where I can hardly summon the energy to breathe.
    My cousin was just on t.v. doing an interview for voting machines. She is very articulate, and once owned her own business before falling into CFIDS. I have asked her if she would do a segment, if we can garner enough support, to lobby for a change in the SS laws that prevent those of us not poor enough to receive aid, but not wealthy enough to afford this disease.
    It is appalling to see the grants being handed out for nonsensical things in the light of those of us suffering so terribly.
    Does anyone know how to apply for a grant?
    Is ANYONE willing to lobby their legislators for a change in these SS laws that are harming those of us afflicted with this malady?

    If so, please email me at [email address removed as per rules]
    I want to see if I can get some type of petition going, and see if enough of us will contact our legislators to garner support for us.

    PLEASE ACT NOW. I don't know about you - but I've been sick long enough. It's time we got some help.
  2. 69mach1

    69mach1 New Member

    you're not supposed to use your email can go to the chat board and release that info....i understand your frustations...been there and still doing it...

    it is in the rules for your protection ok...


  3. IndianPrincess

    IndianPrincess New Member

    Your Profile isn't filled out so we don't know where you live.

    Several of us are working on spreading awareness. If you tell us where you live, perhaps people in your state can band together.

    I urge everyone to get involved on the state level. Find out where your House, Senate and Congree members stand on health care issues and write to them.

    I have given testimony at various forums on healthcare where many representative from the House and Congress have attended. I received a phone call from Congressman Dennis Kucinich's office as a result and they want as much info as I can provide and requested that I stay in touch.

    I am also going to write Congressman Sherrod Brown who is running for a Senate seat here in Ohio. He supports healthcare issues for us.

    Also, his wife Connie Schultz is a Pulitzer Prize winning journalist for The Cleveland Plain Dealer so I intend to write to her also.

    Cindy in East Cleveland, Ohio
  4. wld285

    wld285 New Member

    Would do anything I could, and as fast as I could, but need to know where you live.
  5. IndianPrincess

    IndianPrincess New Member

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