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.

Tuesday, November 30, 2010

Official Day 1-Entering the world again after illness.

This morning I sat at my computer and tried to imagine where to begin. How do I explain 12 yrs. of up and downs, doctors, test, fatigue, days on the couch, anxiety, panic, despair, loneliness, pain. Is it even necessary. 

 Right now I want to start  my first day with a first class outside of my home. I believe that the windows and doors to life open to us. When we start banging them down we usually are on the wrong path. On FB I saw my friend Mary Start doing a boot camp class with her friend Marv.  Long story short, I found out it was with a company called Bells Bodies, owned by Chris Bell.  We spent a lot of time talking about my health issues and my shear determination to get out of this house and try to become whole again. I knew the window opened for we and I said yes to training with him.  I also said yes to taking a class at Tambussi Studio in Westmont.  When I heard where the class was being held I knew another window opened because years ago I taught a dance class there for the school, John of God for handicapped children. 
Here I am at Tambussi's Studio for my class. I was able to keep up about 85% of the time. But I did it. These are the friends I met on my first day.

                                           A haven from my past.
 I think I remember all the names. Amy, Molly, Beth, Me and Rachael.  My first group of women to work out with.
This is Cindy. She teaches ballet at Tambussi's. I was excited to see an old friend.  Although she wasn't in the class she was a women from my past. We practiced Yoga together at Royal Courts.  She is a beautiful woman inside and out and a wonderful dancer.  So happy to be out there again. Thank God!

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