PLS. read this, going 2 media, Pres., Legis, etc. Need ur hlp!

Discussion in 'Fibromyalgia Main Forum' started by outraged, May 2, 2003.

  1. outraged

    outraged New Member

    Okay, I have had enough!! I have suffered for > than 8 yrs. with this nasty disease (FMS&CFS). I have been treated disrespectfully, condescendingly, and like some kind of lab animal who's been poked, proded, loaded with over 120 different medications, and just plain ignored. It is just rediculous and it's about time that we ALL get a chance to be heard and treated with the respect we all deserve!
    Who's with me on this? Hopefully ALL of you will help. I will do most of the work but here is what I need from you:
    I need you all to write your stories for me. Leave nothing out. Tell me first what you are suffering from, with specific symptoms (even if they sound or seem petty-they are NOT and are all part of a bigger picture), tell me how long you've been suffering, what various treatment plans you have been placed on, with specifics as to medications that you have been prescribed (all of them) and what effect they had on you (whether pos or neg), what medications have worked for you (be honest...if you have been helped by narcotics/opioids then tell me and be real specific about what strenghts and dosages helped you the most...here is your one chance to be honest without having to worry about being judged as this information will be strictly confidential)!! I also need to know how many doctors you have seen and how they have treated you, and again, be brutally honest!, I also need to know how this damned disease has negatively affected your life. Have you lost your home, job(s), does your family not understand and treat you as if you are simply lazy and looking for sympathy or excuses to get out of doing things? How long has it been since you've been able to be romantic, date, or even look for someone to share your life with?, Simply tell me EVERYTHING you think that the media and/or Governmental officials need to know about this awful disease and how it has affected your life...It's all important and honestly, it has totally ruined my life and I am so very tired of having to keep this all inside and take it all. Someone, somewhere, has got to listen and help. So, please, send me your stories and I will get this big ole ball rolling and won't stop until we are heard and things change for the better. I want us ALL to have our lives back, and, the sooner the better.
    Remember, together we CAN make a difference. If we don't start now we will continue to suffer and that is just no longer acceptable to me. So please, get those minds working (don't worry about the fibrofog, I'm sure I will get the gist of what you are saying, it doesn't have to be perfect. This is not a writing contest. Just get the words onto paper, don't worry about grammer or literary style, it's simply not important here). What is important is that I get a true picture of how you and your families have suffered because of this awful disease and lack of medical, financial, etc. help out there.

    Lets Roll fibropals,

    Kim H.

    Edited; by Moderator
  2. Smokeymar

    Smokeymar New Member

    Hey, you've got a wonderful idea here!!! Please don't give up on it. I will help all I can!! I had no idea that you were doing anything like this.
    Please don't let us down now!!! I don't have any idea of how to make people actually notice us!! I'm 56 and I've had every bit of the treatment you described!! And I'm tired of it too!!! The nasty looks from older people when I take up a handicap parking place. And that's just one small thing!!!! Please change your mind. You are right, we do need all the help we can get. I've been married for almost 37 years and the last 7 or 8 years have been the hardest on us. My husband is in therapy and taking strong medication because of this damned disease.!!!