Chronically Inspired life with Postural Orthostatic Tachycardia Syndrome and Dystonia

Oh the many things thrown at us like pebbles on a racing river, life with illness an ever changing river. The pain in the battle for diagnosis, the scars left behind from our years of battles, the flowers that bloom on our scars as we heal. Learning to take steps towards the life written in dreams dreamt for years. Pebble after pebble thrown in the raging river mark the journey played out behind. All of sudden a wave of guilt, a storm that creeped over the mountains not expected to roll in, disrupts the calm flow. Guilt for the mess, disaster left in the wake over years of hospitals, appointments and ambulances. The scars our caregivers and loved ones carry with them from innocent love watching over us, holding our hand. Left to wonder if this battle will ever be over, will ever be won... the chapters keep coming, the challenges and healing may change but never seem to end. Binding our wounds as tiny cracks appear, as simple as a smell brings on a racing heart and sweaty palms. Desire ...

 It all started with a phone call... I took the biggest chance of my entire life that week. I did not realize the impact this insane chance my family and I would take in 2014 would have on my life. Google search after google search, reviews and countless medical reports, my mind consumed for days on end. Overwhelmed with fear and consumed with desperation to get better...to get my life back on track. Could this one doctor really give me the answers I have been searching for, answers no one has been able to give me. I was young, I was sick and I was scared, terrified.  It has been 10 years... January 2014 the phone rang ... toledo medical centre.... March 2014 was appointment day. An entire year I waited for that phone to ring...to wake up normal again. I spent night after night trying to rationalize the craziest thing I had ever decided to do.  A Canadian, waiting to get an appointment with an American doctor, to drive across the country to see a well known doctor in Ohio...

You can always count on the seasons to change, I used to wonder why my season of life never really changed. Watching the world around me change, time race around me as I stood still. Photographs captured moments in which i cherish and moments that will leave a mark behind for years to come. We all write pages to add to our book that read the words that build our truest self, the stories we shed tears to and the stories we sing songs to. We are all human, all desperately trying to find balance, the balance of who we are and who we want to become, while we all try to figure out what this life is suppose to be. This world of superficial happiness that some of us are trying to run far away from, holding close to our hearts our stories of true, organic, happiness. The songs I began to sing, the chapter I began to write, took me by surprise, I never pictured these stories being mine. This new profound sense of wanting to sing this story to everyone and yet the overwhelming desire to hold the...

Serving a life sentence... I looked you in the eye, stood there yelling at you.  I cant shake these cuffs you put around my wrists. When will i have given you enough? I sacrificed my future, you stole my smile.. I ask myself why i cannot celebrate anymore, then i see you lurking in my reflection. There are moments i forget about you, there are moments i cannot fight the tears any longer. You have me serving a life sentence.. Through all my fight, my suffering, i learned how to paint flowers on the walls, i learned to let the light peak through the cracks in the white walls you built around my heart; mind; soul. I found warmth in the cold you trapped me in.  Serving a life sentence.. i am breaking free, i will leave this box you keep me in. learning from each test; lesson and trial you throw at me, yet you continue to rob me of raw real excitement, that warm fuzzy feeling i try so hard to remember felt. I feel time pass differently than the people walking past me. Power rushes ...

lately I catch myself questioning if i deserve these wonderful things happening in my life right now, feeling disbelief warm over me. Having moments that leave me pinching myself to make sure it is real. I am constantly checking in with myself to remind myself i am worthy, to stay present in the moment, and most importantly enjoy each moment as it is. Remembering to take everything in around me, like taking a picture in mind, that i can go back to when i need. For years in my toughest of moments I held onto the dreams of better days, a future that was greater than anyone expected. I built a dream life in my head, kept it simple and only dreamed to accomplish more than i thought i could.  Living in this space between dreaming and reality, tied down to reality by my chronic illness. I float away in the dreaming and get brought back down to reality on the regular. Why does no one talk about the constant smack in the face when you live with an illness or ailment? We hate admitting that...

My fingers dance through the grass and flowers around me as I walk the most simple yet beautiful dirt road, as I pass by corn fields, walking along the river flowing with the breeze. This moment is the reality of the image that lives within my mind that I held onto for dear life in my toughest of moments. The sounds, smells, sensations I can finally put to the dream I would escape into my mind too. Surrounded in white walls , sterile smells, discomfort and pain, these times I let my mind dance away to this dream place. My mind wandered through the wilderness of a place I dreamed of. I longed to see, feel, a space of peace and stillness. A moment of grace that I longed to run away too. The desire to be still and be present in my own mind, in my own being. Filled with bliss and pride to discover this dream has always lived within me, the place I longed to run away too was actually a peace within myself that I needed to find. I find myself falling in love with adventure, with each small s...