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, December 8, 2010


I love this sign. When I saw it I felt like a little kid. I wish there were more signs around us like this that said; LOVE, PEACE, PATIENCE. Just as a visual reminder for the times we are out of balance.

I came to this neighborhood today to meet a women that has Fibromyalgia. I lived in this area  many years ago. Somehow we are always coming back. It felt comforting to be in a place that I could recall so many wonderful memories and unfortunately some very disturbing memories. Anyway, our plans were to do a gentle yoga class and then just sit and have tea and chat. Time to share our stories and support each other. Two people creating community. 
Wellspring Center for Yoga and Health in Merchantville.
Myself, Elaine and my new friend Cheryl.
YOGA, one of the many things I love in life. Oh, how it can change you through the practice, stillness, inner work, spirituality.  The benefits are a thousand fold. Today was my first day back to a studio, on this one year journey.  Elaine, our instructor,  spoke about Light today. She mentioned how this Season is the coming of the Light of the World. She reminded us of the Light that is within us, although so many times depression, anxiety and fear engross us in our own darkness.  I am surrounded by the most brilliant Light I have experienced in a very long time. The days change drastically from one to the next. Never knowing who I will meet, what I will discover, what I will experience is emotionally draining and exciting. It's quite overwhelming and challenging. It has been many years since the world is my playground. My job now is to find the balance in this healing process so that I can walk in the Light of peace knowing that whatever happens I will survive and grow in whatever comes my way. 

1 comment:

  1. Namaste my sister. Thoughts, feeling and emotions like the ones you share will guide you to all your desires. Go well and prosper in love.

    In Lak' esh, my dear sister, freedom from illness...


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