We Should Have National Rallies.

Discussion in 'Fibromyalgia Main Forum' started by joeb7th, Mar 29, 2007.

  1. joeb7th

    joeb7th New Member

    I'm serious, like these political rallies against Bush and his war, I think eventually we should stage a nationwide rally ( many cities ) to let the country know what we are going through and that it is real and it is down-played too much by doctors and our medical system in general.

    Actually too many of us are mistreated out there in the med society and that should be one of the focus points of these rally's...to stop that kind of dismissive treatment.

    But look at the interest just from watching the nationally seen TV show "House" the other day and this wasn't even mainly about Fibro.

    I don't have the means or organizational skills to plan this out, but I would love it to happen some day and see all the national news media having to report on these across the nation rallys.

    Rally's where thousands of people ( sufferers and their friends and families) take to the streets with signs and give press conferences and speeches, demanding more respect from our med society and from our representatives in government regarding this illness which appears to be growing in numbers.
  2. Didoe

    Didoe New Member

    have you lost all sense man,
    do you want the country to shut down in self defense with us all stumbling, dizzy, foggy and in a variety of pains to rival a salad bar?
    the national guard is overseas, marines are out gettin their last change tatoos, our women may be drafted to go to Irak since we're runnin short.
    best to leave us home and teach us some skills like knittin socks or penning pal letters for our home sick soldiers and disability lawyers
    55 year old hippie do gooder probably still driving a Volkswagon van without shocks? Or is it parked in the front yard waiting for repair...Got yer birkenstocks on? braid yer beard and go have a toke to clear your brain bro
    p.s. i dont think our country owns enuf porta pottys for a rally like this[This Message was Edited on 03/29/2007]
  3. jmq

    jmq New Member

    You did it again...I fell off the bed laughing so hard from your response.

    I am one of those ole hippies and did plenty of protesting in my day...so I am on board...I will just bring a pillow and cot instead of the gas masks...

    I can just see us all getting arrested for the meds we would all have on us!

    I am sorry..I cant stop laughing
    I needed that..
  4. Didoe

    Didoe New Member

    not everyone in the 60s smoked a toke...but any self respecting hippie smelled of patchouli oil (which masked the weed LMAO)
    A generation of men and woman smelling like furnture varnish
    this may explain JoeB's nostalgia for a get2gether
    JoeB, patchouli still cheap in NYC, I'll send you a tube or a can of Pledge, its the same buzz if you close your eyes
  5. Didoe

    Didoe New Member

    A generation of debacle, misguided politics, sordid rampant sex, drugs, bathing in the washington fountain and for some rock & roll, for the rest of us, Bach and brahms. It was different then, our t*ts were still up north rather than flying south. Life was serious...who takes life seriously now? only someone who hasnt learned any lessons.
  6. pat460

    pat460 New Member

    You're my new hero! Who needs Superman? I'm flying a laughter high after reading your posts! And froggy I'll throw my bra on your bonfire! A man musta invented those torture devices. Then his brother, in all his manly wisdom, decided the torture needed balance and came up with the thong!
  7. Reidsbeads

    Reidsbeads New Member

    They are perscribed for chonic pain sufferers in general because when your in pain all the time it stands to reason your going to be depressed.
  8. Reidsbeads

    Reidsbeads New Member

    It would make more sense and it would definatly send the message that we are tired and in pain!! It would be funny to get arrested for all the drugs were on but look at the media frenzy that would cause. We should smoke a dubie and think about this!! Just kidding i dont smoke that stuff anymore but it would be pretty awesome. When the media asks us what were doing we will hold up the signs it took us a week to make!!!!! lol
  9. sues1

    sues1 New Member

    A sea of cots with blankies and pillows and everyone sleeping. I for sure would need a closeby port a potty.

    Someone assigned to wake up the next speaker....and others to keep water filled for everyone so they could take their meds. Also would need to read our little speech as we would not remember them.......lol funny........Susan
  10. clerty

    clerty New Member

    I just came accross this post and I am laughing at it
    really funny a sleep in would be fun !!!!

  11. desertlass

    desertlass New Member

    You're back!
    I was wondering how you are doing?

    I'll join you in any rally as long as it's beds on wheels. Unless we had a fundraiser that was a mattress race, I don't know what else we could do?

    We could have novelty games, such as "Name that Protocol". "I can name that protocol in three supplements, Bob".

    Laptop contests-- who can flip theirs open, log onto the board and post a message in the fastest time possible, offend the most people and get the most responses.

    And yes, we could take breaks to watch "House", hoping that they'll have a script with the cure for CFS in it between commercials.

    Count me in!
  12. Reidsbeads

    Reidsbeads New Member

    Where and when should this be!! I saw something someplace about National Fibro and CFS awareness day being May 12. I dont know if that was old info or a thing they do every year.

    I am excited now, even though I cannot sleep for anything lately, this sounds like a great way to open some eyes (NOT OURS OF COURSE, WE ARE TIRED) and let people know that we are not nuts, drug addicts, and that our problems are real...NOT IN OUR HEADS...
    So who do we get to organize because im really ready for this! I will hitch a ride and hope a "hippie mobile" picks me up so I can sleep on the way there!!!


    You know for a bunch of people in pain and suffering we sure are brilliant!! Do you think it's us or the meds??!! Just Kidding of course it is us!! (on meds)lol I feel great this morning now that i've been here, tired and in pain as i am, it almost gives me hope!!
    [This Message was Edited on 03/30/2007]
  13. michele3322

    michele3322 New Member

    I really needed to read all of this today. We all need to do something... I'm sick and tired of being sick and tired. And it seem to me everyone else is right there with me....By now we all know if we don't do something for our selves no one will. So count me in...I have always been a flower child at heart.
  14. morningsonshine

    morningsonshine New Member

    Not to be a party pooper or anything, but i'm just wondering how most of us would even be able to make it to a rally???

    But if we did it would be a grand PJ sleeping party!
  15. coolma

    coolma New Member

    May 12th Fibro Awareness Day doesn't seem to have much "punch". Nothing done in my area. The more noise a group makes, the more attention is given to the problem. We need some advocates to make noise for us, and to do some organizing. I do think there are enough people on the web to organize - but who's going to be able to get out there? I hear alot of CFS info especially on the web, but I am wondering, what attention is really being given to Fibro? Been in this illness a really long time and still, to real powerful advocacy. We really need some help!
  16. Didoe

    Didoe New Member

    If JoeB is serious and anyone else, is there a way for us to contact one another safely about this without ticking off the admins?

    Just like a man to light a match & disappear after the fire starts burning LMAO

  17. janie056

    janie056 New Member

    I'm in! Now if I can just get the cobwebs out of my brain and figure something out I will be back with suggestions.

    I still have my gauze shirt, peace sign still sewed on it, along with , OH MY look what I found in the pocket of these ripped jeans.

    Really a great idea though!

    Instead of the Million Man March, it could be the Million Pain,Crawling and Pleading March!

  18. janie056

    janie056 New Member

    why can't we, who want to, get together in the chit chat room or maybe have this site put up another room for people who want to exchange email address info and the likes.
    We are a very strong group here and this is really a great idea, but we need to talk about it and make plans, and how can we if we only have here to post.

    Any ideas?

  19. roge

    roge Member

    I'm in!!!

    I am quite literally sick and tired of seeing all the awareness and rallies for so many other disease and not ours. I mean even today up in Canada, more national coverage on ADD, no offence to those with ADD, but cmon, this is merely one symptom (and a more minor one I might add) than the other 15 symptoms us FM and CFSers deal with.

    While I'm in another flare as I right this, I have enough energy to say I am pissed now and I am ready to rally and tell Ottawa and Canada and the world that I and the rest of us are not going to take this BS anymore and we want to be heard and we want our governments to do more.

    Likely not enough time to succesfully orgainze for this May 12, but something we should all do on May 12, 2008. Best would be to organize through support groups locally and so all cities would rally at their respective city halls on May 12 at a certain hour.

    Lucky for me I am in the Canada's capital and our one and only national charity (FM-CFS Canada) is here too, I know there are like 7 or 8 local support groups and Ottawa and metro has a population of 1 million, so figure there are 30,000 - 50,000 people in Ottawa who have these diseases and even if we can get half plus families (for those lucky enough like me to have their support) we would have an army strong and then we rally on parliament hill and we start with the song Twisted Sister (were not gonna take it! - he he)

    seriously, when I am feeling better , I am going to contact FM-CFS Canada and see what they think, as they are the national charity , I suppose they would help organize this on the national level.

    And then in the USA too, and in Austrailia, and in UK and all over the world!!! same day and same hour,


    ok , I'm spent, gotta rest.

  20. joeb7th

    joeb7th New Member

    I have to admit, I didn't know anything about fibro, CFS except an occassional article about it until 15 months ago.

    The lady who wrote the "Sea Biscuit" race horse story that was turned into a movie a few years ago had her CFS story written up in Parade Magazine (I think ) around the time this film came out.

    I read that and I felt bad for her even then. Her descriptions of her pain and suffering were so vivid and gut wrenching. And I believed every word she said about how bad her illness was. It was a very powerful story she told.

    But until I got this I still had no idea.

    No idea that this disease could inflict so much pain and destroy so many things in your life...like your ability to work and support yourself, your career, your social life, your sex life, your family life, your hopeful outlook and even your local hospital and medical community reputation.

    Even as I write this post, I am in such an entire body, muscle, joint, intestinal tract and almost indescribeably depressing, spirit crushing soreness and tired weakness, that I cannot believe it. It consumes you...and unfortunately your thinking too often as well.

    And yet, just 15 months ago I never even clicked on medical sites and never complained about medical problems except the ocassional older person aches from working. It was "easy" to get my mind on more uplifting thoughts.

    But as of now I just have not mastered the ability to think more positively despite the pain. I have not had any improvement in my medical state and I am not handling this anything close to as well as most of you ( under statement and so obvious it's embarrassing. )

    And I know I should not post these negative posts so often.
    and I apologize for them. And maybe someday I can actually write a good-news, more positive post. I sure hope so.

    But they are the truth about this illness from at least one sufferer's experience so far. And I believe we should ocassionally post the truth on these boards and elsewhere, no matter how sad, unpleasant or depressing. How else will anyone know how truly powerful and disabling these diseases are if we don't share this truth with them?

    I have spoken up to a few of my doctors and ER doctors about their not really believing me or believing that the pain is that bad. And because I do this alone, they are able to deal with me as a psyche case. It's their word against mine and in my community doctors are respected like gods.

    If I wrote an article in my local paper about this experience and the dismissiveness and humiliating treatment by so many docs here, 90 percent of the readers would instantly side with the doctors who have labeled me more nuts than normal.

    I'll never win an argument with a doctor here and in the minds of most Americans.

    But yet, in my heart and mind I know the truth about this illness. I know the truth about it's power and pain and ability to make you almost mad with suffering. Nothing can change that. Not even 90 percent of the country believing the doctors over me.

    Yet, the ONLY way anybody is ever going to take me or most of us more seriously is if we speak out LOUDLY and more often and in unison. With reason and truth and evidence.

    Right now I can't go anywhere in my smaller community for treatment. Because the ER can only give you a quick fix pain or anxiety med.

    And in my case, I have such a frantic record at my local hospital for visiting the ER so much since I got this 15 months ago, and with their tests not showing anything, that I am being met with actual anger now on the part of the ER docs who know me.

    It has taken this much humiliation for me to just scarily sit at home ( I feel like I could faint more and more with this ) and moan through this completely draining pain versus the time when, if I had this kind of body feelings for even a few hours before I got this, I would be racing to a doctor and saying "HELP ME, PLEASE!"

    Now as always, I am feeling like I need to be in the hospital, literally fighting back the tears and edge of panic from the non-stop pain, yet I have maxed out my credibility credit line at my hospital. And if I go there even one more time, the angry fed-up creditor doctors will just call the psyche ward reps to come collect this nut. "Get him off our backs...please!"

    It is this torturous, incongruous and cruel paradox of suffering and being disbelieved and treated disrespectfully at the same time that is the mind blowing story behind these pain inducing yet clinically-not-showing-anything immune system damaging illnesses.

    If that tragic and unethical combination scenario of pain and humiliating dismissiveness isn't a horror movie nightmare that needs to be shouted out and exposed , what is?

    But to ever break through this sad nationwide denial on the part of those who take oaths to respect our pain and suffering and to try to heal this without down-playing and humiliation and anger ...it will only come about if large numbers of people shout out and expose this AMA travesty.

    Maybe we can't get out in the street. But hows this for a awareness and protest idea:

    We could all flood every web site our energy levels will allow us to on a certain weekend, and post on every message baord an agreed upon declaration expressing these points.

    Yes, your postings will be removed by a board monitor I am sure, but keep posting that entire weekend.

    Call it a "Post-In!" I go on the AOL political boards off and on and I could find another 100 boards on AOL to post this. I promise you that I would do this if you would. Sp what if half my postings get kicked off. At least tens of thousands of people would see these messages.

    I would post a brief run down story of this class of immune system damaging diseases, and a brief true life experience of the pain and suffering they cause...and lastly yet most importantly, I would post about the sad and unethical paradox that I have described here so many times about the attitude of too many in our medical society who not only down-play and/or dismiss the complaints of the sufferers these diseases but the humiliating, incredibly unethical, almost barbaric inferrences or even blunt suggestions to these patients that they are more mentally ill than physical.

    The shunting off of too many fibro-CFS patients to the psychiatric Gulag by medical doctors is a reality for many of us if one is to believe the many postings telling of this here.

    And because this has happened to me in such a shocking and unbelieveable way after 54 years of never being treated like this, I am motivated to speak out like I do so often here and everywhere.

    I have to trust that there are enough people on this board that agree with me that we should all speak out more about our illness's and the treatement we receive for them.

    So, what weekend should we pick to do our " Fibro-CFS AWARENESS/PROTEST POST-IN? "

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