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    “There is nothing we can do for you” #bedsidemanner

    Why would any physicians office utter these words unless the ultimate outcome was death? I have heard these words more times than I could have ever imagined over the past six years living with chronic rare diseases. Right now, I’m experiencing inflammation of my sternum and rib cage following bilateral rib resection surgery. I’m a chronic pain patient, so I’m used to being uncomfortable. I used to being in pain. So when a physician told me my inflammation pain could be relieved by a round of steroids. If those don’t work, they can inject a steroid into the areas in pain, I was hopeful. I tried the pills for 10 days with no relief. After another 10 days of giving me the run around (we’re still processing the referral), the office assistant at a pain management clinic finally returned my call and said they “couldn’t help me.” I refuse to loose hope and know a doctor will help me. I just can’t fathom telling a patient those words. #Next #TOS #MdDS

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    1 rib down, 1 to go

    Recovering from my first thoracic outlet decompression surgery. My symptoms from MdDS have skyrocketed and I have a long journey to recovery, but I’m home and improving every day. #TOS #MdDS #RareDisorder #journeytorecovery #

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    Downward Dog

    When you’re trying to get back into your yoga practice and your pet takes downward dog a little too seriously. #yogawithabalancedisorder #MdDS #TOS

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    This is 40!!

    Chronic pain, dizziness, nausea and numbness will not keep me from making memories and celebrating this milestone. #MdDS #TOS #chonicpain #celebratenotisolate #thisis40

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    When life gives you lemons...

    Take a fireball shot. Today marks five years I’ve been living with this chronic illness. Rather than crawling into bed in tears, I invited my supporters for a walk by Fireball shot parade. #faithoverfear #drinkofcourage #celebratenotisolate #MdDS

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    You know what that yellow line means? My usual migraine injector is traveling, so I had to put in my big girl pants and give myself the injection for the first time in two years. #terrifiedofneedles #icandobravethings #MdDS

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    #ChronicPain #MdDS

    Just an almost 40 year old, wishing it was colder, so I could wear a turtleneck to hide my cupping hickey. #Chronicpainsucks #thisismdds #wantobelikeMichaelPhelps


    My husband #spouse , #Autism #high functioning, recently diagnosed. Relationship #relationship #Marriage #MdDS #Autism advice anyone?

    Married 16yrs, been good, his being diagnosed explains a lot. I have depression, anxiety, OCD myself. He was recently officially diagnosed in September 2019 and it has been a MAJOR life adjustment for both of us.

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    MdDS chronicling invisible neurological balance disorder


    MdDS a chronicle of an invisible neurological balance disorder

    Empathy & raising awareness

    Pease no pity


    Try living with & attempting to

    Walk with severely altered balance,

    Sensations of constant rocking, bobbing, swaying, tumbling,

    Balance affected

    Disequilibrium, & unsteadiness,

    as if walking on a suspension bridge, water bed, trampoline


    a stormy ship in high seas.

    Moving floor sensation earthquake beneath ones feet

    severe & noticeable while walking, standing, sitting.


    Associated considerable fatigue.

    Life altering

    Require support for walking, standing, holding on to walls.

    Clumsily handling objects – dropping things


    G forces gravitational pulling downwardly at my bodily being

    Brain fog lingering


    Unceasing internal movement sensations as I read



    My new normal



    Thus began my eight year journey with MdDS

    Neurological testing, CAT scanning, ENT & VNG testing

    Ruling - rare disease finding

    Less than 20,000 victims world wide


    Life altering

    Car driving untenable


    Currently 78 years of age

    Still ticking


    Eight years with an invisible neurological balance disorder complicating my life.

    Pain & imbalance

    Accompanying my ever movement.

    Walker, wheelchair, impoverished movement

    All constant, unrelenting & goading companions.


    Yet I find joy in my most important realities,

    My children, grandchildren, great grandchildren, family, journaling,

    my memoir sharing group, audio-book reading, computing, viewing

    Photo scanning for my family’s visual memoir,


    I pursue multitudes of other delightful endeavors. 


    You see I press on

    with this inwardly twisted tangled body trailing relentlessly on. 


    This is the path I am on

    This is the road I must travel to get to the place I must go.

    Life is still precious

    Even when partnered with unwelcomed companions.


    This Is Me - This Is My Life



    This is the road I choose to travel to arrive

    at the place where I must go.