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.

Saturday, August 27, 2011


Let me give a quick update on my health issues since February.  Kidney failure, heart disease, vasculitis and severe anemia have all been unexpected problems this year.  Because my immune system was so compromised I was seseptable to infection. The complicatons included phenumia, ear infections, herpes of the eyes, vertico, blurred vision, tinitus (constant  ringing in the ears). This all led to anxiety and panic attacks. While all this was taking place I also was receiving regular blood transfusions due to the anemia. My energy level was about 2 on a scale of 1 to 10. In April my doctors determined that I would have to start chemotherapy  again.  This time it would be more intense then last August.  On April 29th I began  treatment of  high doses of steroids and Rituxan. This was followed with 5 days of oral Cituxan chemotherapy. If I thought I  was sick prior to the chemo was I ever in for the biggest surprise of my life.  It only got worse.  I felt as though each and every chemo pill I swallowed was killing me more and more each day. The panic attacks were controlling my life.  The fear was mind boggling.  Each day felt like my last. My world was ever so small just lying on the couch day after day waiting for some kind of relief. The doctors were not offering me the hope I was looking for. I needed to do my own work if I was going to find the hope I needed to survive.

To my unexpected surprise, with my strong faith, trust in God, my best friend and husband Chris, my awesome family and close friends I began to regain my strength.  I started having what I call "peep a boo moments" when I felt very brief glimpses of relief.  Half way through my treatments I began to feel hope again.  There was hope stirring in my soul and determination brewing in my spirit.  I recall on one particular day when I felt a change in my attitude.  I knew I had to beat this sheer craziness I was living. Hour after hour I repeated in my mind and sometimes out loud, "I am happy, I am healthy, I am one with the Lord." My attitude began to change. I insisted that my husband change his attitude.   We weren't going to look at every little set back as the end of the world and possibly the end of my life.  We were going to change our minds and change our lives.  I have a statue in my Zen garden that reads, "what we think we become".  Did I think I was going to die? Sometimes I did. I saw my future as just one health issue after another. I was excepting the fact that this was the only life I would ever know again. My body and spirit became helpless. I lost hope because day after day things became worse.  Of course if you have never experienced losing control of your body, mind and spirit it definitely is a frightening journey. It was time to change my attitude and change my life.  By the Grace of God I began to rise above this torment. Moments of relief and healing turned into hours and then into days. My test results began to improve along with my energy.  Yesterday, August 26th was my last treatment. I walked into the treatment room full of energy and hope knowing in my heart I have been given another chance to live my life with a vibrant healthy body and spirit.  Never question the resilience of the human body, the power of the mind and spirit.

It is our responsibility to walk away from every challenge in life with a powerful new positive attitude. Know and believe that in each and every hurdle we encounter there is a wealth of knowledge we receive to carry us through our next pathway.  Never allow the  difficult times in your life determine your  future.  They are the stepping stones to your future happiness.

If you or anyone you know has Cryobolbulinemia Vasculitis please contact me on this blog.

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Please contact me at if you would like to know more about Cryoglobulinemia Vasculitis.