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 1, 2010


As I was walking on the treadmill today, I began to think about the treadmill of life. When you haven't experienced a traumatic event in your life unfortunately, sometimes, we don't take the time to reevaluate where we are and why. Perhaps we recognize the presence of our physical bodies but don't NOTICE that we are on the treadmill of life.  Are we looking for the turns in the road? Are we sometimes caught on the merry go round. Do you hear yourself screaming in your head, "let me off of here".  Do me ever stop and just notice. Is it easy to relax and enjoy solitude, nature, the absence of electronics?  The treadmill is definitely a boring method of exercise for me. Just one foot in front of the other going  nowhere fast.  Maybe it's time to Wake Up each and every day and take the time to be a witness to life.  A writer I enjoy, uses these words in his yoga of life;" breath, relax, feel, notice, allow."

I met my cardio goal for the day of one hour. Since I am exercising for health I realized how important it is to be non-judgmental of my accomplishments.  I can set my desired goal that I think I can achieve but as I was noticing the speed in which I was walking  thoughts started rising through my head. I'm going so slow.  I should be able to do better than this speed. What if I don't meet my goal today?  I had to stop and remember what I was doing and why. Who am I doing this for, anyway? Are you going to judge me? Is anyone going to judge me?  Life isn't meant to always be a constant  competition. There's a time and place for competition but not in our everyday lives.  Can I accept where I am in my life? Can you?  Can I place my intention before me and let it happen? Can you? 

Can we put one foot in front of the other each day and be present to our direction, our steps, our body language, our thoughts, our soul?  It takes practice each and everyday. Yoga/Union.  Body, mind and spirit.  Peace

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