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.

Thursday, December 2, 2010


My first day at Bell's Bodies. 

Just met Nick today. One of the 8 new people I've met this week. What a thrill. Besides people from the medical field I haven't been well enough to socialize.
This is Chris from Bell's.  I have a long way to go to get re-conditioned. I'm in no hurry.
I am just happy to be alive and well.
Praise God!

I would never have thought I would be in this place last year this time. It is as if I have been granted my own special miracle. Speaking for myself, I have taken my many blessings for granted. During the course of time living with my health issues I have developed a greater appreciation for the gift of each and everyday. I believe I am more present to people, more understanding and more forgiving.  I've learned to stop judging and taking everything personally. I'm still working on that.  Life is not all about me! Life is what I can do for you.

The level of my spirituality has skyrocketed.  I always believed in a God. Now I understand the term I Am. I Am a part of this incredible universe and I am not doing this alone.  The inter connection of our bodies and souls carries all we will ever need to truly heal physically and mentally. I have learned to experience and listen to my soul. Enjoy the peace of stillness.

Today was an amazing day. I felt alive again able to accomplish in one day what would normally take a week. At the end of my afternoon I had the priviledge of picking up one of my grandchildren after school.
This is Johnny. One of 4 grandchildren.  He was the cream on the top of my day.
So just remember;
You are valuable just because you exist. Not because of what you do, or what you have done but simply because you are." -Max Lucado. You are all uniquely valuable. A disease limits what you can do but it cannot limit who you are or your value as a person. (A quote on my Facebook)
Dig deep, search for meaning, pray for others, read about the many souls that walked this earth to share their wisdom. Acquire knowledge. There is more than one way to heal. Begin the journey of self discovery. "Ask and you will receive" Jesus Christ.

Read, read- read! Watch U tube for inspiration. Follow an athlete and discover what determination is. 

Never feel sorry f or yourself. It's a waste of time and emotions. Rise above the challenge.  Healing is finding peace with what is.


  1. Way to go on the blog Mare. Thus is serious stuff!

  2. Thanks Jenn. I'm serious about how happy and healthy I am. I really feel like it's my time to reach out and help others who struggle. It would help if you hit the follow button. The more people that follow, the more exposure the sight gets just by shear numbers. Then I can get the audience that is looking for hope. After hope comes determination. I'm working on my grammar.


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