Need Your InputI'm Speaking Before Another Panel 8/24

Discussion in 'Fibromyalgia Main Forum' started by IndianPrincess, Aug 23, 2006.

  1. IndianPrincess

    IndianPrincess New Member

    I need your immediate input to present before The Citizens Healthcare Working Group TONIGHT at 6 p.m. at Trinity Cathedral; 22nd and Euclid; Cleveland, Ohio.

    Clevelanders-Please come if you can!

    Please go to for details. This invitation to speak was impromptu so I don't have all the details to explain but I intend to spread more awareness regarding Fibro and CFIDS, etc. in all aspects from dealing with the medical community to getting Social Security Disability.

    Tell your stories and I will take a print out. I'm sorry this is such short notice. I was just released from the hospital and just got the message asking me to speak.

    I will be leaving for this conference at 5 p.m. Eastern time.

    I have 25 Immune Support Brochures to take with me. Wish I had more.

    Thank you!

    [This Message was Edited on 08/23/2006]
  2. kirbycat

    kirbycat New Member

    go to WWW.CFIDS.ORG there is a wealth of good info on causes, treatment, talking to family/friends. you can print out some good stuff for your speech.

    Go luck!!!
  3. IndianPrincess

    IndianPrincess New Member

    Please add to this thread your stories so I may present them in one long post. I don't have time to edit comments.

    Thanks anyway.

    This panel was mandated by CONGRESS NATIONWIDE! Please refer to link above!

    Thank you!


    P.S. Thank you Cathy! Already got it![This Message was Edited on 08/23/2006]
  4. IndianPrincess

    IndianPrincess New Member

    Find a post you put on this board regarding your difficulty with the medical community, getting procedures covered under insurance, etc. Anything regarding healthcare. Copy and paste it onto this thread. Will save typing. Just end it with your first name or your board name and the state you are in!


    P.S. My post is below. Note the original date I posted it. All I did was copy and paste in this thread. Please continue with yours.[This Message was Edited on 08/23/2006]
  5. IndianPrincess

    IndianPrincess New Member

    Original post at message board 03/22/05 03:01 PM

    He diagnosed me with CFIDS, knew I had an abnormal sleep study with recommendations from the sleep lab as to how to treat me (which he didn't follow through on) and knows that I can't drive because of the sleep disorder.

    Twice he witnessed tremors so severe that I could barely speak. He knows that I was admitted for partial hospitalization for anxiety and depression. In the past he took me out of work and stood up on my behalf so that I could go through vocational rehabilitation. At that time in 1998, the State of Ohio considered me severely disabled and I was no where near as bad as I am now.

    So here is the letter he sent to my attorney that they were going to sent to Social Security.

    He is a Board Certified Internist but he writes at a fourth grade level. No medical terminology in this letter.

    By the way, I was a lithographer and fine manipulation and hand-eye coordination is essential. I have to have the cutting skills (with an X-acto knife) of a surgeon!

    Cindy (Ohio)

    February 4, 2005

    Re: Cynthia (My last name)
    To Whom It May Concern:

    Cynthia's prior primary care physician acquired labs indicating she was positive for Epstein-Barr. She has been my patient since 1995. Cynthia's most recent labs resulted in normal for thyroid check, normal cholesterol, blood count, glucose and all results in her comprehensive panel.

    Her primary symptoms are fatigue and generalized tiredness. It is difficult to assess her regarding disability as her tiredness comes in episodes to which she states that other times she's feeling not so bad.

    Cynthia has put forth a lot of energy to research and manage her physical symptoms. She is very articulate in her communications to our office about her findings and other information that she shares. I referred her to a cardiologist in August 2004 regarding some concerns she had. As of today's date she has not followed up with my referral.

    Going on my best judgement regarding her working functional capacity, in an 8-hour day, she should be able to sit 4 to 6 hours. Standing and walking would be an estimate of 1 to 3 hours. Assessing her general physical capabilities, she should be able to carry up to 10 pounds occassionally, anything more probably not.

    No limitations with repetitive reaching, handling, fingering or lifting. I do not see any significant problems with grasping, turning or twisting. No fine manipulation problems, but she does have some mild tremor. Her current medications include Lexapro 10 mg and Klonopin mg q.d.p.r.n. She has not had any surgeries. I think she does have some problems with stress, that could inhibit her ability to function in a competitive work environment. I think there are some emotional factors contributing to this, but she probably should obtain a psychiatric evaluation for the depths of her anxiety or depression.

    [This Message was Edited on 08/23/2006]
    [This Message was Edited on 08/23/2006]
  6. IndianPrincess

    IndianPrincess New Member

  7. kirbycat

    kirbycat New Member

    I saw my PCP last week, after over a year of sending me to 2 neurologists to rule out MS. He said 'wait and see on the MS'. Then to rheumo's to dx fibro (which he did in 10mins) test after test, blood, MRI's and going hither and yon. Another dx CFS.
    I specificly asked my PCP if she was comfortable treating me with fibro/cfs, she said she was. I have high blood pressure and being treated for that with meds and diet.
    Last week I told her that after taking over the counter pain meds (advil,tylenol,motrin) that I needed a 'rescue drug' if the pain gets too intense. She promptly told me that she would not prescribe any pain meds because I may get addicted. I took print outs of all the info on this site about pain and treatments, She ignored all of that. She told me what she knew about fibro/csf she learned in med school (15yrs ago) and had no interest in reading more.
    I quit her and I'm trying to find someone else.
    It is awful out there.
  8. morninstar

    morninstar New Member

    I am speaking in behalf of my sister, She was diagnosed 10 years ago with CFIDS. We flew from Bham Al to Harvard to meet with Dr. Robert Bell, this was the beginning of a horror story. At this time she owned a business worth over a million dollars needless to say she has lost that, along with all means of survival. Her husband of 10 years decided he could not participate in a marriage as a care giver. After many years of being bed confined and depending on whoever came through today to feed her she finally did get disability. She filed without an attorney (she has no money) and after years of being thrown from place to place in the legal system fighting IRS, debtors and every other heartless person she did manage to win this much. This is one of the most deadly diseases simply because no one really knows what to do to help. This has changed so many lives in a bad way that it is sad to think about the future without a cure.
  9. SweetT

    SweetT New Member

    Gave Kaiser 9 years of my life 07/24/06 10:38 AM

    And would only choose them if they were the only plan available. Kaiser doctors are the ones who wouldn't diagnose me----------only wanted to give me narcotics and say I needed mental health care because the pain was all in my head(which I was receiving). As soon as I went to see a doctor under another insurance company, I was diagnosed with FMS & CFS on the first visit. Kaiser is the reason that I have a fear of going to see the doctor now!!! I sooooo entrusted them with my care, and the doctors and specialists, as a whole, treated me like crap. The only nice Kaiser doctor that I ever dealt with was a urologist.

    Kaiser is convenient (you have a pharmacy and all the departments in one building) and they are pretty nice to kids. But if you are an adult with any kind of chronic illness who doesn't want to be given an endless supply of prescription drugs, Kaiser is not the place for you. Also, their advice nurses, on the whole, are rude and nasty.

    I'm in Ohio, by the way.

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