My speech before N.E. Ohio Voices for Healthcare State Reps.

Discussion in 'Fibromyalgia Main Forum' started by IndianPrincess, Aug 25, 2006.

  1. IndianPrincess

    IndianPrincess New Member

    Hi Everyone!
    Last night I had the opportunity to speak before the Northeast Ohio Voices for Healthcare forum.

    Forums of this nature are being held across the United States to address the rising costs of healthcare and inadequate coverage especially for the elderly, those on fixed incomes, those without health coverage, the disabled and the homeless.

    Now you can have a voice too! Log onto www.citizenshealthcare.gov where you can tell your story regarding problems you are having with healthcare benefits, health treatment, etc. regarding medical.

    Also the website will provide you with essential information.

    Many Ohio House Representatives in the Greater Cleveland area were in attendance including those running for office.

    Congressmen Sherrod Brown and Dennis Kucinich had representatives in attendance as well.

    Many of those giving testimony talked about having to decide between medication or food. Others talked about how the medical community, especially social workers don't know about the many programs that are available for free meds.

    A pathologist that I know talked about the poor training of med students and the inadequacies of proper treatment that he, himself a doctor, has received at the renowned facilities here in Cleveland. Dr. Pretlow is a pathologist at Case-Western Reserve University.

    A nurse who treats the homeless spoke about giving adequate care to those living on the streets and how difficult it is for them to receive care without having I.D.s or an address.

    We each had only two minutes to speak so I drastically had to edit my speech. I have posted it below. Read my comments following my speech.

    *****

    My name is Cynthia Miller. I am 50 years old, was a journeyman lithographer by trade until I could no longer work due to the disabling symptoms from two conditions known as Fibromyalgia Syndrome and Chronic Fatigue Immune Dysfunction Syndrome.

    The lack of interest, education and downright prejudice in the medical community regarding these two conditions lead to my health failing.

    The medical community, with very few exceptions and despite ongoing medical research still considers Fibromyalgia and CFIDS wastebasket diseases. The medical community trivializes the severity of the symptoms and the impact that these two "diseases" have on one's ability to function minute-by-minute, hour-by-hour, day-to-day at home and in the work environment - life in general.

    Due to the ignorance of the medical community, many of us have lost our jobs due to inability to function in the work environment. This results in loss of health care benefits, income, of course; inability to receive adequate treatment which was the reason we lost our jobs in the first place, and fear of losing and / or the eventual loss of housing.

    We lack support from our doctors to receive public benefit safety nets that our tax dollars have paid for. These include welfare cash assistance and of course Social Security Disability Income.

    Our dilemma is that there is no conclusive test for either condition such as blood work that pinpoints a defective gene like a cancer cell. There are various tests that show abnormalities but no clear marker of these "diseases".

    I personally was homeless for 6 months; sleeping at Community Women's Shelter on Payne Avenue.

    Now, I referred to my conditions as syndromes.

    The term syndrome derived from the Greek means literally "run together".

    In medicine, the term syndrome is the association of several clinically recognizable features, signs, symptoms, phenomena or characteristics which often occur together, so that the presence of one feature alerts the physician to the presence of the others.

    In recent decades the term has been used outside of medicine to refer to a combination of phenomena seen in association.

    What I just described to you is a syndrome of having to deal with the medical community and the effect of lack of proper treatment, support, loss of job, income, health care, housing, etc.

    I could no longer function on my job. The biggest blow was when I couldn't remember how to do my job.

    All of the aforementioned cost me my career, my independence, social life and, of course, income which led to my homelessness.

    I participate on a message board/online support group for people with Fibromyalgia and CFIDS. The website is www.immunesupport.com.

    Daily I read posts from those whose SSDI was finally approved after much suffering over the years from bureaucratic red tape resulting in financial disaster.

    These people, once approved, can barely make ends meet due to the exorbitant cost of Medicare, needed medications and therapy plus having to pay for housing, groceries, etc. They have also lost their foodstamp benefits.

    Like the "diseases" we are afflicted with, our current state of healthcare in this country is a syndrome. One inadequacy in the system causes chaos in trying to maneuver through the system to get help.

    It is my belief that once the healthcare system is fixed, the economy will improve and poverty and homelessness will lessen dramatically!

    END

    After the forum was over, many people came up to me and commented about my speech and I was asked if I would be interested in speaking at other healthcare forums.

    ALSO, I handed out the Fibro/CFS Information Guides from ProHealth to three House Members and to the congressional representatives. I wrote on the brochures that we needed their support for the renewal of the CFS Advisory Committee's charter due to expire September 5th. My phone number was also on these brochures!

    PLEASE, PLEASE, PLEASE follow my advice and utilize the government website I posted above.

    Cindy

    P.S. I was unable to use the posts from the thread I started but I will print I and give it to the committee! So keep adding to it!

    And a BIG THANK YOU to all who contributed!!!!!




    [This Message was Edited on 08/25/2006]
  2. ckahele

    ckahele New Member

    I am a huge fan of Dennis Kucinich.
    Unfortunately I live over the border in Pittsburgh so I don't have the opportunity to vote for him.

    I think it's marvelous what you are doing.
    Thanks for the info on getting involved!
    Cyndy
  3. IndianPrincess

    IndianPrincess New Member

    Dennis was my congressman for 10 years and he is a very compassionate man. Should be President!

    You can be involved by logging onto the site I posted.

    OFF TOPIC: I went to The Art Institute from 74-77, lived at Duquesne University and partied down there and at CMU and Zelda's in Oakland. Now I'm hungry for a dog and fries from "The Dirty O"! Grew up along the Ohio River north of Steubenville and YUNZ is a regular part of my vocabulary.

    Gotta go and "worsh" my hands, finish cooking and red up the place before Gary gets home! LOL

    Cindy
    [This Message was Edited on 08/25/2006]
  4. rockgor

    rockgor Well-Known Member

    Great work, Cindy.

    Most healthy people are terrified of public speaking.

    You have my admiration. I hope the effort involved didn't cause a flare.
  5. marmayer

    marmayer Member

    I am so impressed!!! I would be sooo nervous to do any public speaking-and to a forum of that nature! You must feel so good about yourself. Way to go! Thanks!
  6. IndianPrincess

    IndianPrincess New Member

    Thank you for the compliment. No flare (fortunately) but my boyfriend didn't want me to do this since I just got out of the hospital Wednesday night after spending two days there for excellerated heart rate of 156 and lightheadedness.

    Didn't have heart attack, BP was good but CPAP was on order for Medicaid approval from 2 months ago. Cardiologist said he would contact Medicaid himself since my sleep disorder caused another problem.

    The CPAP was delivered and set up today!

    Cindy
  7. SweetT

    SweetT New Member

    Was it televised?
  8. IndianPrincess

    IndianPrincess New Member

    The local media is always invited but no one was there with cameras.

    I will write about it for The Grapevine. Someone from The Plain Press likely was there.

    Seems like Cleveland TV is only interested in sensational news like Tom Hanks going to an Indians game or Sharon Reed's BOGUS report on her night spent at Community Women's Shelter. Channel 19 - Fair and acqurate reporting my eye!!!

    Cindy
    Will try to call you this weekend some time. Going to NEOCH picnic at Edgewater Park tomorrow.
  9. mezombie

    mezombie Member

    Great job! You represented us all so well! Thank you!
  10. ckahele

    ckahele New Member

    I notice you never said if you rooted for them 'Stillers'!
    Hmmmm?????
    Even the most die hard Steeler fan felt pain when the jerk who owned the Brown's picked up and went to Baltimore.
    We all cheered when Cleveland got the name back.

    Go Browns!
    Go Steelers.
    AND...Dennis Kucinich in '08!
    Cyndy
  11. Marta608

    Marta608 Member

    Excellent job! Thank you.

    Marta
  12. carebelle

    carebelle New Member

    I to am moving to Ohio I grew up in Cincinnati my husband is from Mt Vernon and Going to teach in a medical school in the Dayton area.

    I have done public speaking about other things in the pass and have been thinking of writing my own speech to give at clubs and churches to educate about these DD's

    May I use parts of your speech if I am able to do this in my future ? I plan to hopefully put together a short program once we move and you had very good points .

    Thank you soooo much for doing this .

    I have Indian Blood in me my Great grand father was full blooded Cherokee. LOL I'm Blond and blue eyes but have the high cheek bones. I'm VERY prood to have Indian Blood in my history.
    How can Can I become an Indian Princess too :)

    I always wanted a real Indian name

    thank you again, and I love your name maybe we will meet someday my sister in law lives in cleveland