Tuesday, May 29, 2012

Part One: Never Before Revealed



            On the CBS Sunday Morning program this last Sunday, they featured Louie Zamperini, a World War II veteran, whose life story was told by Laura Hillenbrand in her new book Unbroken. If you haven’t watched the interview, you should. Here’s the link:  CBS Sunday Morning.
            Many of you know that I suffer like Laura (and I don’t use the term suffer lightly) with Chronic Fatigue Immune Dysfunction Syndrome (CFIDS). She was my inspiration to finally becoming published.
            Laura is bed-ridden and home-bound. Unbroken took her seven years to write, she conducted all of her interviews over the phone, and she never met Louie until recently.
            During the interview, Louie confided that he gave Laura one of his Purple Heart medals. He stated that he suffered several years during the War but what Laura has suffered for the last thirty years, and continues to suffer, is much worse.
            I can’t express to you how validating that was to hear from someone of his caliber. In a society where more people suffer with CFIDS than those with Multiple Sclerosis, lung cancer and AIDS put together, it’s hard to understand why even doctors are still skeptical and mistreat CFIDS patients.
            Had I been properly diagnosed, I may not be as ill today.(1) Getting treatment within the first year is critical and can reduce symptoms and improve recovery. I went seven years and through about twenty doctors before my diagnosis. Seven years!
            My story began with an incompetent doctor who did blood work on me and determined at the age of seventeen that I had a venereal disease or Systemic Lupus Erythematosus (SLE). Not believing me or my mother that I didn’t have a venereal disease, he injected me with an extremely high dose of antibiotics.(2)
                To that point in my life, I had been extremely healthy and hardly ever sick. After that, I became extremely ill:  my skin crawled, I continually got sick, I started having seizures. I wouldn’t find out until nine years later that I was allergic to penicillin.
            I continued with college and then a job, struggling with severe fatigue, weakness, cognitive issues, constant illnesses and swollen glands. I knew every restroom stop from one end of the valley to the next. Many years later, my sister would take her daughters on a road trip of every place she’d had to stop for me to vomit along the side of the road while we were travelling to and from college.
            Despite falling asleep on the job from such severe exhaustion, doctors would run standard CBC blood tests and find nothing wrong. I’d hear the standard lose weight answer and “Don’t worry, Be Happy” mantra from a popular song at the time.
            After continuing to gain excessive weight, I finally gave in and went to a weight-loss specialist who put me on a liquid diet. I lost very little weight. The doctor assumed I was cheating and was lying about it. Neither was the case.
            One day, he called me on the phone at work and told me I needed to come to his office immediately. Once there, he told me I had abnormal liver enzyme test results. I later found out that many of the other patients who were on the liquid diet had been diagnosed with the same liver issues. I now have Non-Alcoholic Steatohepatitis (cirrhosis of the liver).
            My problems didn’t end there.

            See next week for the second part of:  Never Before Revealed.

Cindy A. Christiansen
Sweet Romance, Comedy, Suspense…and Dogs!
Fly into a good book today at:  www.dragonflyromance.com

(1)        Two men also contracted CFIDS at my work. They were diagnosed within the first year, took medical leave, and partially recovered (enough to return to work).
(2)         Doctors in the future would call me a liar. SLE is diagnosed with an arthritis panel, not with a venereal disease panel. I promptly show them my documented medical records and they are surprised. 

10 comments:

  1. Cindy: What an ordeal you've been through. As a kid a doctor misdiagnosed me as having a stomach ache. Mom took me to another doctor who immediately made the correct diagnosis: Appendicitis. This was in the late 1940s and they barely got my appendex out before it burst. I'm sorry to hear of the mistakes and terrible trauma to you with wrong medicines.

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  2. Hi Cindy,

    You have been through so much in your life and yet here you are standing proud and tall and shouting out your stories about on paper for others to enjoy.

    And now you are educating the rest of us by telling us about your real life experiences! You are one awesome lady!

    Your are my inspiration!
    Diane

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  3. Larry,
    Let's just say, doctors are not perfect. If you watch the interview with Louie he talks about forgiveness. He sets a wonderful example. As for me, I've wanted to write about a doctor who gets murdered. (lol)
    We all endure, don't we?
    Thanks for commenting,
    Cindy

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  4. Wow, Diane!
    Thanks for the wonderful complements. Life can be challenging, but we most go on and enjoy what we can along the way.
    Thanks so much for reading and commenting. I hope you'll check out the rest of the story next week!
    Cindy

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  5. Wow, you've had a amazing amount of pain to deal with. I hope things have at least stabilized for you.

    I've been through the misdiagnosis/ dueling doctors thing just recently. Ain't fun!

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  6. Kathy W,
    Sorry to hear about your dueling docs. You're right, it isn't fun. A patient pretty much has to know what they have to get any help these days. Sharing our stories helps.
    Good luck and God bless you,
    Cindy

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  7. This is terrible, Cindy. I'm so sorry! It's bad enough to be misdiagnosed, but then to have doctors accuse you of lying!

    Yes, I know they're only people, and they make mistakes too. It's amazing that you've struggled through all these trials.

    My heart goes out to you, and yet I salute you too.

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  8. Thanks, Miss Mae. Hope you'll join me next week for Part Two. :)
    Cindy

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  9. Some of the medical gods out in our world forget that all of the blood work must be looked at, not just what they believe! You are one strong lady. I've thought that since I first met you,,,,I do so even more now. Three times the trials. You better get your own pillow cloud in heaven! Love ya, gal.

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  10. Cindy how heartbreaking ot have an allergic reaction to a medication and them not recognize it. That is horrible what the medical community has put you through. I hope you can find some relief soon. Proud of how strong you are to push on through it and get published. Take care.

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