Alliance For Cryoglobulinemia

Alliance For Cryoglobulinemia
You Are RARE But NOT Alone

About Me

My photo
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


Although this is not very clear it is the ending segment of my son John's completion of his first Ironman.  This year as I struggled with a rare blood disease my word of confidence changed from Hope to Determination.  Besides my husband and family, John has been my inspiration to achieve my  dreams. As I watch him train for numerous hours, I found the inner strength to start again on the road to recovery, both mentally and physically.
Twelve years ago my goal was to be a professional body builder.  I made it to amateur. And them all hell broke loss in my life. I was 47 yrs old and in the best shape in my life. Strong, ripped and confident.  That very first year I lost my job as a trainer, my sport, my friends and organizations. I felt like I lost me. I did lose me.
Following is a short article I wrote for the Arthritis Society about my life with Fibromyalgia and Chronic Fatigue Syndrome.  The time period is about 1 year into living with this new disease.


  There are many details about tests, medicines, doctors, supplements, pain, lack of sleep, and a list of others situations to elaborate on.  At this point in my life the details serve no purpose.  If I could help just one person deal with this disease in a positive way then all of my suffering has not been in vain.  I truly am happy for all I have experienced though this year.  For without it I would not have been able to see all that I was missing and the necessary changes that were meant to be made in my life.

 I have learned more about life, people and myself than I could ever have imagined.  Now, I realize that I have so much to be thankful for.  I feel as though I am one of the lucky people in this world because I was given the opportunity to stop dead in my tracks and re-evaluate who I am, what my life is all about and where I want to go for the rest of my life.  I was taken off the vicious merry-go round and placed in a protective shell.  Within my shell a transformation happened. I have grown into a much healthier and simpler human being in mind and spirit.   I realized that all things have a purpose and that something positive generates from all negative.  I began to enjoy the present moment and stopped focusing on the future.  I began to accept help from people around me and realized that it is nice to receive.  I stopped controlling and allowed LIFE TO JUST BE. The world around me became a vibrant beautiful garden rather than a world filled with errands, chores and responsibilities.  It became my loving nurturing friend, one to whom I never have to prove anything to.  Competing, excelling, explaining, accomplishing were needs that began to dissolve.  Instead, a Spirit arose in me and showed be the meaning of peace, stillness and silence.  Within the comfort of this quiet darkness I began to listen, hear and respond to the meaning and purpose of my life. Like a snake shedding its skin, I am working to shed all that I no longer need in my life and all the parts of my life and myself that drained me of my energy.

I thank God for this experience with Fibromyalgia.  Although it is a daily struggle living with Fibro., one in which I have no doubts that I can handle, I take each day as a gift and open it with reverence and gratitude. For without this experience I would have missed the marvelous journey that I was intended to claim.

No comments:

Post a Comment

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