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, July 6, 2012

Sleeping and Waiting For Healing With YOU My Friends.


  Three weeks ago I started redesigning my blog but as you can see it is still under construction.  Why?  I had an unexpected setback with my health.  When that happens I go into a state, which I refer to as SLEEPING.  Now sleeping is not one of my favorite things to do, especially during the day, since my nature is that of an A personally. Go, do, plan, dream, accomplish are all things that fill my spirit with an overwhelming love for life. I become sad when I fall asleep because I know that once again I am losing control. . This present state of slumber is due to low hemoglobin levels, swelling in my legs and feet which obviously has put my girlish gate down to a slow crawl, numerous test, brain fog, fatigue and a tad of depression and exasperation  to say the least.   

Today I am resting in this place of gentle sleep waiting for medical treatments to stimulate the healing process allowing me to rejoin life with the enthusiasm I hold in my heart. I must be patient and allow the flow of life's energy to work its magic and offer me new eyes once again as I awake from my slumber. 

Maybe next week I will get back to the business of picking out colors, formatting resources, posting patient stories, and peering through the window of opportunity that proliferates the healing of my body, mind and spirit.

For today I will recall and cherish all those who have touched me and offered me strength, hope and friendship through it all.  

 United We Stand-Brotherhood of Man


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