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.

Sunday, December 26, 2010


This Christmas Season has brought an awareness to me that is both sad and exciting. Sad, because I am closing a gigantic door on things I believed in. Exciting, because I know in my heart there is a new chapter starting to reveal itself to me. I've cried endless tears from that place deep inside that cries back to you that it is over. It's a new beginning.

I've realized how easy it is to be a humble, loving person when you are ill. And I have been ill for a long time.  I know that the mix of personalities and situations in my new life are more challenging than the years of illness I have been living with. Presently, God is working in mysteries ways in my life but I know when the spirit is with me I am walking into peace and glory along with the fires of hell.  But that is how we shed all the unwanted garbage we have accumulated in a life time. 

So this new chapter begins but the page is not turning easily. It feels more like a gigantic door to a castle that I have to open. A great teacher, St Theresa of Avila, tells us that God's house has many mansions. In each mansions there are many lessons to be learned. I am entering one of the very difficult mansions. I do know when the door is completely open I will discover the challenge I have been waiting for all my life.  This time the challenge is about me. Just me. It's about strength of character, standing up for the things I believe in.  It's about realizing that there are people in my life that I will hurt because of my opinion. For to long I have put the opinions of others above my own just to be accepted, just to keep peace. There needs to be a balance in my internal world so that I don't continue to fill by body with diseased feelings. I have been killing myself by internalizing my feelings and letting the world think everything is OK. In doing so I have caused much damage.

I also want something that I know those closest to me won't agree with because of the fear of my illness. I'm not afraid anymore. I'm 59 and there may not be many chapters left. I want my physical strength back.  I want to feel the passion that drives me daily and fills me with my own inner peace. I want to rise above the ordinary for my age and feel the athlete that I was.  I want to follow this passion and share with those who are weak either physically or mentally to reach inside and find strength, hope and determination to live a full life. 

I've spent the last 12 years of my life devouring information and opinions of scholars, spiritual teachers, gurus. Their wisdom, understanding and insight is precious and profound. But now I want to put away the books and just live my life my way and see how it feels to be me. I want to experience confrontation, attempt new adventures and not be afraid of failure. I want to say NO because I just don't want to and not be afraid to hurt someones feelings. I want to be authentic. I want to throw away all the masks I own and be free to be me. 

Just maybe I can heal myself in this next chapter and be fortunate enough to share my own wisdom. Just maybe.

1 comment:

  1. Namaste my sister NaNa. Truth can only be found from within, may your journey yield great peace and love. I was thinking of you when I found this video on alternate health. If you wish I can make you some as a gift, but you will need to wait a few months.

    In Lak' esh, my sister, wisdom seeker...


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