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The Dichotomy of Chronic Illness

Having an illness without a cure is a situation filled with dichotomy.  You want to get better, but most of the time you can’t get better. You try things that you think will make you improve, and sometimes they make you worse.  It’s hard on the head (to say the least!). This is a glimpse into my story.

At first, my doctors told me that I was crazy and that no such thing exists (especially regarding Fibromyalgia and Chronic Fatigue Syndrome…).  I got referred to a psychiatrist, and can literally say that I have taken nearly every anti-depressant, anti-epileptic, and anti-psychotic on the market.  Most of these drugs make me incredibly sick, and there is a marked decrease in bodily functioning from this point in my life forward.  Alas, there is nothing I can do about that time period but leave it in the past, and continue the struggle.

Eventually, doctors and specialists came to terms that this behavior had been lasting for years and years and that more and more tests were coming back wrong.

Types of doctors I have seen:

  • General practitioner
  • Specialty allergist
  • Internist/Gastroenterologist
  • Neurologist
  • Rheumatologist(s)
  • Psychiatrist(s)
  • Psychologist
  • Pain Management Physician
  • (soon to be) Endocrinologist
  • OB-GYN (PCOS and infertility issues)
  • ER doctors (of course!)

Honestly, I can’t even remember if this is all of them!  I’ve also had nearly every test known to man done on me – bone scans, EEGs, ECGs, gastric emptying studies, endoscopies, colonoscopies, MRI’s, CT scans, bone marrow extraction, skin biopsies, epic amounts of blood drawn, etc…

Now, I have more of the answers.  I have more diagnoses.  But this doesn’t make life any easier, as none of these illnesses can be cured.  I am taking an enormous amount of medication right now, that I am detoxing off of in the attempts to get to the bare minimum.

In addition to Fibromyalgia and CFS, I also fight some vaguely diagnosed autoimmune disorders, as well as a severe chemical imbalance in the brain.  We are currently investigating a tumor on my pituitary gland that may be releasing its own set of hormones. I am also being investigated for Narcolepsy.

Even though the ups and downs of medication trials (as multiple chemical sensitivity means each new one could potentially kill me), I work hard to stay positive.  I read positive things, I cultivate positive actions, and I try to live the lifestyle I preach.  Sure I break down and cry.  But like every other woman on this site, I am a fighter.  I will not back down, and I will not let this get the better of me.

Do not let doctors boss you around my loves.  You know your body better than anyone else, and you will know when something is wrong with it.  Keep fighting until you get the help you need.  It’s worth it.

xoxo,

Annie

This article is intended to convey general educational information and should not be relied upon as a substitute for professional healthcare advice.

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8 comments

  1. Gina

    I admire the courage and tenacity you’ve shown. So many millions all over our world have the precise symptoms. Even as a now sufferer, I didn’t use to believe all of this was real. Fibro’ believes in you whether you believe in it or not. It’s like gravity, invisible but exerting a powerful influence every second of our lives.

  2. Adrielle

    Annie, ur an angel 🙂 You’re such a fighter, and such an inspiration!

  3. Carrie

    That last paragraph really hit home for me. I’ve had times in my life when I almost believed the doctors that I was nuts, even though, in reality, I was dying a very slow and excruciatingly painful death for months, when it could’ve been relieved with a routine operation.

    I can’t get over how strong you are. You may not feel strong all the time — I know I don’t — but believe me when I say you are strong. And you always remind me to stay positive and strong by example.

    • linda worley

      OH YEAH I AM OPFFICALY NUTS BUT I GET PAID I COULD NOT KEEP JOB I THINK ALL FEMALES HATE ME

  4. Annie

    Carrie, Gina, and Adrielle – you know I love you both and your fights as well! <3

    Gina – I love your last line. It speaks more truth about this illness than most things I've ever heard 🙂

    • linda worley

      GIRL YOUR AMAZING YOU GAVE ME HOPE I ALSO HAVE SOME WHAT YOU HAVE SOMETIMES I HAVE FOOT IN MOUTH DISEASE NOW I LIVE ALONE SOMETIMES SO HARD MY WAS WITH ME 20 YEARS I THOUGHT WE WOULD BE TOGETHER. THERE WERE CLUES LIKE WHY WE NEVER WENT OUT ONLY TO STORE HE SAID I WAS CRAZY AND I EMBARRESSED HIM I AFTER THERAPY AM FEELING OK WITH ME I HAVE SOMEONE WHO LOVES ME SO MUCH BUT NOT HERE YET OH SORRY I HOPE NOT BOTHER YOU

  5. Tracy

    My fiance was having issues similiar to yours. He has been diagnosed with a brain disease calle Chiari 1 Malformation with a cerebar tonsillar ectopia. It was originally thought that Chiari was very rare, but we have learned that so many people have this and it’s not being researched to find a cure. Don’t want to add to your list, but I believe in researching every possible cause. This may be something to look into, Good Luck and be well ♥

  6. ASHLEY ALLEN

    I see that this was written a long time ago. I hope you have more answers and you are doing well. I believe I have similar complications. I have been diagnosed with Narcolepsy. Hormone problems, chronic pain, and exhaustion continue to be problems that nobody has been able to figure out. I would love to speak with you. If you feel like chatting, my email is dolfinbud@yahoo.com.

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