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.

Monday, June 18, 2012

My site is under Construction!

This site is under construction with a new look and a clearer vision offering a place for  patient stories, people I admire, things I love, topics on Rare and Autoimmune Disease and a look at Complete Wellness.

Please be patience with me as I redecorate my home. The Welcome sign is being painted as I post.  

So many things have changed since I started my blog, that's why I'm cleaning house.  If fact when I wrote my first post I was just writing my thoughts on my computer instead of in a journal because I have terrible hand writing and half the time I can't read what I write. I heard people mention blogs so decided to give it a try. I was never consistent because I've been to ill most of the time and my heart wasn't in it and who really cared, so I thought. I'm not a writer or an editor so the words don't flow as eloquently as those I admire most but the words I do write are my sincerest thoughts as simple as they may be.

I began to write because I was living in the fear of dying when I was first diagnosed with a rare disease called Cryoglobulinemia Vasculitis.  At the time I couldn't even say the words let alone spell them.  It was a distressing and frightening time in my life so I started to write about it and look for people like myself with Cryo but I could only find one person.  There weren't any organizations, support groups or information to tell me now to live with this strange disease that caused my blood to turn to a thick gel in changing and cold temperatures. I started a search that has changed my life from a lost and frightened woman to an empowered patient living with a purpose and a passion to touch the lives of others looking for hope and direction.   Regina Holliday painted a jacket for me for The Walking Gallery, "Go tell it on the Mountain”. I will live up to the honor of this call by sharing my knowledge and networks as I walk this journey of hope and advocacy.  

laughingNana isn't getting any younger but she sure is happier since she has met all of you.

Be well in Body, Mind and Spirit.

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.