Alliance For Cryoglobulinemia

Alliance For Cryoglobulinemia
You Are RARE But NOT Alone

About Me

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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.

Wednesday, September 26, 2012

Departure for Stanford Medicine X

Anticipation and fear fuel me as I hear the engines roar and I feel the plane in motion.  So long I have hovered in my quiet, small world, nourished by my family, close friends, healthcare providers and internet friends.

Leaving my safe place after three years is exciting and frightening, as I venture into a new place leaving my cocoon of protection, my home. I realize how safe I feel in my little hut of protection after this three year journey of the unknown, living with a Rare Diseases.

Who will care for me in a new location in California?  Will the doctors understand my needs if my health fails me? There are so many what ifs I face that no one understands. 

Because Stanford Medicine X said yes to my application as an e-Patient scholar I am traveling across the country from coast to coast.  I’ve had so many obstacles to overcome beginning with my own health along with my dad’s health.  Building a presence on social media is time consuming yet essential as I search for answers to why I am so sick along with my patient community. 

I am here.  I am taking off the ground and venturing into a new chapter.  Hope tells me miracles happen and remission can be forever.  Fear says, OMG what if your legs swell and you can’t walk, your fatigue is so bad you can’t think when you arrive at this medical conference?

Reality says,  I can handle whatever comes my way because I have a husband that will do anything for me, a family that won’t allow me to feel sorry for myself and God to give me the wisdom and  gifts needed to be all I am meant to be. 

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