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.

Wednesday, December 1, 2010


I have been in remission for 9 weeks now with almost no signs of the disease I have been diagnosed with this year, Cryoglobulinemic vasculitis. I was treated with one month of high dose steroids and chemotherapy.  It appears the culprit is either hiding or vanished.  Only time will tell.  Due to my weak immune system I am susceptible to just about any virus, etc that is floating around.  One week ago, I thought I had pink eye. I ended up at Wills Eye Hospital with a virus in my eye that caused an abrasion on my cornea.  Lots of pain for several days but once treated I have had great progress.  The eye specialist said that I will have to be on yet another medication due to the fact that I can get this eye virus at any time.
One month ago my Doctor told me I could start exercising again, not to lose weight but for my head.  I started slow in my home and started watching everything I ate.  I am happy to say that I have lost 6 pounds so far.
Today I am on my own for exercise.  I will attempt to do 1 hour of cardio on the treadmill. Now I will start tracking my speed, distance, and heart rate.  Within in 3 more weeks I hope to have a goal for both time and distance.
I'm sure I can find a chart to add to my blog.  That's a question for my kids to answer or anyone else than wants to contribute.
Last night Chris(husband) and I spent an evening with Deepak Choprah. I have been following his work for many years.  For those with analytical  minds you would have love his facts and and graphs.  The lecture really left you wondering why we do the things we do. Why are we always doing and not just being.  One of my favorite lines he said was "you are the creator of your own happiness".  And "our intention is the the beginning of all results that filter back into our lives"  My intention is to touch those suffering as I have and help them open the doors to happiness.

1 comment:

  1. Namaste, my sister. Few of us take the time to appreciate the good health we enjoy. Reading a blog like yours brings home such thoughts. I wish you well hoping that some day soon you can reach a point in your life where there is peace.

    I am a lover of science, spirituality and alternate health. I invite you to browse through the video section on my site about alternate healing. If you enjoyed a night with Deepak, they you will love the spiritual section of video content. There are over 300 free videos for you to choose from, enjoy.

    In Lak' esh, sister, best regards...


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