Alliance For Cryoglobulinemia

Alliance For Cryoglobulinemia
You Are RARE But NOT Alone

About Me

My photo
My Maddening Maze began suddenly, when I was just 47, with a plethora of autoimmune diseases. The life I knew changed forever due to chronic debilitating fatigue and pain. Faced with challenges beyond my understanding I began a never ending search for answers. I was later diagnosed in 2010 with a Rare Disease, Cryoglobulinemia Vasculitis. This disease causes my blood to gel in what appears to be temperatures lower than 70 degrees. When this phenomenon happens it can be life threatening causing organ damage, stroke, eye and vision loss along with a host of other complications. Both my kidneys and heart have been attacked by this uninvited guest and each day brings new challenges both physically and mentally. I live to find answers for myself and others that are afflicted with this rare disease and to find joy in living, whatever the cost. My passion and purpose is sharing the voice of the patient lost in the Maze and offering the face of Wellness in spite of it all.

Sunday, June 10, 2012

Who Am I?

Who Am I?

If I go to a funeral and walk away untouched, I say, "shame on me".  In the pain of loss, seeing the tears of grief, connecting to memories gone by, if I don't question who I am and why I do what I do, I say, "shame on me". Does it matter what I do? Does it matter who I am in society? Who hears me? No, who really hears me? It's the circle of connectivity that empowers the spirit. Who am I connected to? I travel in and out of circles yearning to feel the throbbing beat of other minds and hearts that feel as I do, perhaps laugh my kind of laugh, feel my passion and understand the love that calls me to purpose.

So I think, when I leave will you know my reason for being? Did you know me or just the face of me?  I love living and I live to love yet fear invades me. Why? What if I die today? What will THEY say?  Did I really live? Never will I know living until I touch each moment. If I can say goodbye to yesterday and keep my fears at bay of tomorrow than I can truly live this moment, every moment in peace, joy and wellness.

My heart saddened watching the faces of those who didn't say their last goodbyes, those letting go of a human touch that fed their soul. But I rejoiced just knowing someone who led such a simple life yet touched so many. Her Sunday pasta dinner not only feed her families bellies but filled their lives with memories of unconditional lasting love.

Now I think about me and how sick and tired I am living with a Rare Disease, Cryoglobulinemia. I'm special! Who hears that? How do I count the gifts bestowed on me through my illness? I've been given 3D glasses to view my life, your life, everyone's life wearing psychedelic glasses. Life is electrified by knowing there may not be a tomorrow? Many years of yoga, meditation and mindfulness have never brought me to the clarity of vision I now see by living in the moment of the shadow of death.  This is a gift! Clear seeing is beyond comprehension when the ego of the self dissolves. STOP!  Look around; observe the meaning and purpose of who and why we do what we do. See, feel, notice and be in the ultimate reality of the educated mind versus the voice of the true spirit dwelling in the quiet rampage of the mind.


No comments:

Post a Comment

Please contact me at if you would like to know more about Cryoglobulinemia Vasculitis.