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Article: People With ME/CFS Protest in Front of Department of Health and Human Services Building

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, May 13, 2011.

  1. Enid

    Enid Senior Member

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    UK
    Cort - watching this thread - we have problems here but it astounds me that the US spread globally in so many areas of assistance should not turn to the the aid of their own. Six ill to try to move (they will) comes to all who suffer this as the most devasting indictment of the state of affairs - best wishes in all endeavours.
  2. Leslie

    Leslie

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    RivkaRivka, thank you so much, and all of the others who got out there, told their story, got the sign together. It is something to be very proud of, and I personally thank you. It is so difficult for most of us to even get dressed in the morning. In my 10 + years of being sick I have had some good day, weeks......and now seem to be hit hard again. However, I am grateful for that time. For you all to get out there......no one else knows how hard it is.

    I applied for SSDI sometime in 2001 and finally after 2 1/2 years, being turned down twice (I am in CA), and had to go before a judge. All this was pretty new to everyone, or at least not as out in the open as it is now, so I had to fight. I was lucky with a good attorney, and a judge who listened, but the process to get it was hard. I had worked hard from the time I was 12 years old and at 50 years old lost my career. I told the judge, " maybe I could work for you, I can't work any place else. I don't show up some days, some days I can only work an hour, but I would have to come in at 12noon, or maybe later, or come in for 10 minutes and all of a sudden I might not feel good and have to leave. I might not come in to work for 2 weeks, or maybe work 1/2 day one week. Would you hire me? No one else will if I have to work like that." And so it went. I waited about 6 weeks and he deemed me disabled. It was a long process that most people don't want to go through, to tired......I didn't want to give up my career, I was proud, didn't want to admit I was to tired, how could I be so tired?
    Anyway, you all know this.

    We do need this to be recognized as a disability. (I went to a Dr. in SC who told me I had deep psychological issues that I had not ever delt with, that Drs. on the East coast did not recognize this as a true illness, it was in my head....that was in 2008 after we had moved......coming back to CA in 2009, thank goodness)
    Rambling, I know.......thank you again RivkaRivka!!!:angel:
  3. Leslie

    Leslie

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    Well, one more thing.....I thought that Obama was going to look into this???? The letters sent, the questions asked of him at the town meeting???:confused:
  4. RivkaRivka

    RivkaRivka Senior Member

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    leslie, i'm so sorry it was so hard for you to get on disability. it is absurd the obstacles and hardships our community faces on a daily basis. be strong! be bold! -- rivka
  5. lisann

    lisann

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    Hi Rivka -
    I just saw the video at the link you posted above, w/ your mom, and I tried to leave a comment on your youtube page but it didn't post.
    So I'll try to remember what I wrote and post it here!
    I've been sick for 20 years too, this year. A lifetime.
    Thank you both for the work you're doing - I can only imagine the relapse from the HHS event - and also for giving those of us who are too sick to go to a protest in person something else to do.
    An email is a small and doable thing but still much more than most people interact with thier government on any given day.
    I LOVE your (and your mom's) ideas, and I WILL send an email right now! You are an inspiration - thank you. I KNOW how hard this work must be for you, and I sincerely hope you're recovering well. Thank you so much, Lisa
  6. RivkaRivka

    RivkaRivka Senior Member

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    21 years for me. a lifetime indeed.

    we are all heros with this illness. for many of us, just getting thru every day is a heroic feat.

    i hope we can get more of these mini-demos going in public places, and then we'll see more gov't action to help us.

    political pressure -- pressure from the bottom up. we can do it!

    should be a california demo soon. who else wants to hold one in their city? and if you can't do one live, write an email to sebelius and make noise that way.

    rivka

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