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.

Friday, December 31, 2010


Outdoor ice skating in AustriaImage via Wikipedia
It's the last day of  the year 2010 and I went ice skating with my husband, grandson, and son-in-law. It's been to many years to recall the last time I was on skates but it was exhilarating, scary, and totally awesome. I intend on doing more and more exciting adventures this year as I continue on this one year journey. God ask us to do as the children do. Today I felt that inner warmth of completeness in body and spirit. My life has been so serious with all the medical nuisances. I want to feel the explosion of excitement without anxiety, fear or regret. Although I know I am still climbing mountains to stay well my attitude is completely different. Maybe it just hit me that I really am getting older. Time is flying bye. I want to really live my life with God as my source of courage and daily guide. 

This is me happy without the fear of tomorrow, no confusion or regrets. No self pity. No concern for anything but the MOMENT.

As I dragged myself through this week I knew I was working with a different power of focus.  My blood volume was very low and yet I focused on my goals, not my illness.  I battled through two strong training sessions with tears in my eyes knowing that if I envisioned the end result I was already there. I no longer want to be a prisoner to what may happen tomorrow.  Today I end this year with motivation to touch the stars and dismiss this inner turmoil of despair. 

I will touch the world with my courage and the world will touch me. I will be empowered to follow the self that I am meant to be.

With loving thoughts and blessings,
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  1. Namaste my sister Marianne. Rising, spirit soars on the zephyr of the now moment. In each moment of the now we may choose the perfection of unconditional love.

    I am... the most powerful of all emotions.

    When all seems lost, we finally submit to the simple cry of love. May your heart find balance, acceptance and love without condition in 2011.

    In Lak' ech, my sister NaNa, perception is always yours to own...

  2. I'd love to follow this blog but the follow wedgit is not working.

  3. Was just able to follow. Problem could of been on my end.

  4. What a wonderful post! How beautiful and happy you look ice skating with your family. I hope 2011 is a bright year with you. Sending you lots of healing and positive thoughts. :)

  5. Happy New Year - trust that keeps going. Trust in the Lord who will carry you through!


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