i'd like to help

Discussion in 'Fibromyalgia Main Forum' started by sbroz, Apr 7, 2003.

  1. sbroz

    sbroz New Member

    Hi, my name is Shelly

    My mother, Deborah Ward, was a Fibro sufferer, who succumbed to the flu in October of 2000. I, like many others, was in denial of her suffering. But as it set in and took her over in my late teenage years, I know that I was too immature to accept my mom being different...not only from other mothers, but just from the way she used to be.

    Needless to say, her sudden death shocked and floored me, and the denial continued.

    I have reached a place in my life where I want to understand what she dealt with from day to day...and carry on her legacy of helping others despite her own pain. She has talked fellow fibro sufferers out of suicide, and transcribed a national fibro conference (although I don't know where or when, probably in 1999). She was very pro-active with the fight for acknowledgement and acceptance of this disease.

    I am still angry....angry at the doctors who prescribed her dozens of meds, including oxycontin (they found 70 bottles of pills when they took her body away)....angry at the people who rolled their eyes at her...and angry at my step-father who didn't take her to the hospital that night. But I've come to blame her death on the lack of acknowledgement....I can't imagine suffering from such a debilitating disease and having no one believe you. She was depressed, and probably had a minimal will to live...money was low, debt was high, family wasn't as supportive as they should have been, and the future was bleak at best.

    I really want to get involved. I live in the Boston/South Shore area, and I can help from home but I'd really like to "get out there". Does anyone know of any support groups? Or is anyone living on the South Shore who suffers from this disease? I work for a local radio station and I would love to do a feature in hopes of spreading understanding. Please let me know what I can do.

    peace
    Shelly Brosemer

  2. Megster

    Megster New Member

    I don't live anywhere near you, but just wanted to applaud your willingness to reach out.

    Blessings,
    Meg
  3. Mikie

    Mikie Moderator

    If you are in a position to do a feature on our illnesses, CFS and FMS, it would be a great public service because many sufferers do not have the support they need from loved ones. Just be sure that if you do this, there are no doctors involved in it who just perpetuate the myth that our illnesses are "all in our heads" or that they are caused by depression. Anyone with a chronic illness suffers from depression at some point.

    Ask us anything you want and we will be happy to respond.

    Love, Mikie
  4. tandy

    tandy New Member

    Your interest is nice......&unusual.
    I've had fibromyalgia for 10+ years.I'm located in NY,I suppose not too far from you. I recently checked this area of upstate NY for support groups,and found nothing~I called area hospitals to see if they knew of any FM/Cf groups and they could'nt be of any help.
    Hang around a bit and just read posts,that'll give you a very good idea of what our daily life with these diseases are like~ Its certainly not fun....but it could be worse??(so they say)lol
    Thanks for stopping by;
    Regards,
    Tracey
    Sorry for your great loss~
    :([This Message was Edited on 04/07/2003]
  5. ForeverFlaring

    ForeverFlaring New Member

    Wow, what a rewarding thing to see your mothers illness turn into a positive. I am so sorry for your loss but you are more than willing to carry your mother's legacy of public awareness on. That is incredibly admirable!!

    You are right though, there is too much of a lack of knowledge about this disease by doctors as well as the general public. I remember when I was well enough to work, I told someone I supervised that I had fibromyalgia. I wasn't asking for sympathy but I was trying to explain my lack of energy and extreme pain so he could understand me a bit better. His comment is something I will never forget.
    "Oh yeah! When my left shoulder hurt last month, my doctor told me I had fibromyalgia in it. Just take some motrin and it will go away in a few weeks. I was furious...not at him but at the doctor for diagnosing fibrolyalgia for simple shoulder pain that went away in 3 weeks.

    I am so happy that someone not afflicted with fibro has a passion to make the public aware of it.
  6. Debbi

    Debbi New Member

    how wonderful that you can recognize the pain and suffering of fibro people - plse give up any guilt that you might feel - you have now reached out and may be able to help more than just one - while I am from Canada, I cannot help with your topic. I am sure that your mother is sitting in awe and joy over your decision.
    Thank you and {{{{{gentle fibro hugs}}}}}.
  7. ozgran

    ozgran New Member

    I am from Australia and so not much support for what you are trying to do, but like others I support you and applaud you. It is a difficult disease and there is so much misconception and non understanding, some of the worst aspects are those from medical directions.Drs who try to blame everything on the state of your mind as happened to me for a number of years really do not help. It was a relief when a Dr diagnosed FM and that has now been confirmed by a Rheumy'. Anyway, good luck with what you are trying to do. Love Ozgran.
  8. sbroz

    sbroz New Member

    for all of your kind words, sharing and helpful advice. of course i don't wish to capitolize of anyone's pain, i have my own, as we all do. i just want to see this disease treated like any other disease that has no known treatment or cure (MS, etc)...with walks and other fundraisers, unbiased media attention, and plain acknowledgement. Most people don't even know about FMS, partly because it's not widely publicized, and partly because people are afraid to explain their illness for fear of ridicule or skepticism. And those two go hand-in-hand. I wish I knew how to start a movement, but I'm pretty new at this. My radio career can only do so much, I work for a station that covers about twenty small towns south of boston, so I can spread the message only so much through that avenue, and it would only run for one day unless i did a two-part series, and that would only do so much justice. And to Mikie....I think it's obvious my intention is to bring some leverage to the other side. My mom lived her last years in shame and despair, and I want to end that for everyone who has FMS. It's not fair.

    I have more to say but it will have to wait because I'm in the middle of a 60-hour week and I don't have alot of time right now. I'll talk to you guys soon.

  9. Sandyz

    Sandyz New Member

    First off, I want to say I`m so sorry you lost your mother. That is so hard. She sounds like a great lady.

    It meant so much to hear you say those three little words, "You want to help." I also got tears in my eyes because we are all so ill and we have nobody to fight for us. We have each other which helps alot but many of us don`t have much fight left in us after battling this disease for so long. Thank you so much for offering to help!!It means a lot.
  10. Susan07

    Susan07 New Member

    We need people to stand up for us - because we hurt too bad to do it ourselves! I could never attend a conference, it's just too painful to get around.