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, February 24, 2011


It has been a long time since I have written. To my surprise I had several setbacks this years. I have been back and forth to doctors since I last posted. In January I was admitted to Cooper Hospital with a new health issue, congestive heart failure and a weakened heart muscle.  When I left the hospital I  ended up with pneumonia.  It's taken a lot to get back on my feet. I believe first in God and second in myself so I know I will always get through the crisis. 

My daughter is delivering our first granddaughter on Friday. That is our 5th angel. That in itself has kept me treading hard through the storm.  Although I do believe the Lord is the one who carries me.

I prefer not to read blogs that give tons of details so I will get right to the point.  This rare blood disease (Cryoglobulinemia)that I now live with has been quite a challenge since it has been a very cold winter here in NJ.  I can not be exposed to cold temperatures. Therefore, I have become a hermit. Friday I was supposed to start six more five day treatments of chemo.  I have to admit that I was not handling the time frame very well with my new grandchild on the way. Six rounds over the course of five months is a long time to be down again.  I'm almost standing and I feel the bowling ball coming at me to knock me back down.

Two days ago I called my oncologist to find out the results of my  blood test. He was testing to determine if I still was in remission. It came back negative. My doctor was sure it was going to be positive. Everyone is aghast.  Chemo is cancelled for Friday and I wait until all the doctors confirm that this is really possible.

What is it? Faith, hope, prayers, a real miracle?  Does God really test us to our limits? Does this strengthen our faith so we can spread the good news of the Lord and give others hope? Is it just part of the cycle of life. Good verses evil. Nothing last forever. Why? Am I more courageous today? You bet your butt I am. Do I want to spread hope, reassurance and inspiration? Definitely. Why is life so difficult? Why so many challenges?  Did God make this life so difficult so we would search Him out? Or does life just have it's ups and downs. 

How come some people just seem to breeze through life without any real tragedy?  I've always considered myself a selfless person having compassion, lending forgiveness, searching harder and harder for my higher power? At the same time witnessing my shortcomings.  And yet I have had more than my share of serious struggles through my entire life? Why?

As I sit and ponder and question I sit in awe that I may have been granted another miracle. Do me realize all the miracles we receive in life?

I pray today you receive at least one small miracle or at least you feel the spirit enter your heart.

Love and blessings to all,



  1. The small miracle I have received today is your beautiful presence. May you be blessed with love and light.

    In Lak' ech, my sister Na Na, living beyond fear in search of love...

  2. You are a kind and loving soul.

    Be well in Spirit.


  3. Thank you for sharing your experience, strength and hope.:)


  4. amen!!! yes dealing with chronic illness I understand to slow down and actually see things!!!

  5. I take great comfort in your post. Thank you so much for sharing your faith and strength with others and me. I have been through a difficult health problem, though very different from yours, I wouldn't have come through it without my faith in God and His Love!
    I wish you every blessing.
    God bless
    Beth x

  6. I always find the Lord's ways in these matters wonderful: in each He is working out what is needed to secure exactly what he has in mind that will shine eternally. Some have what seems to be rough treatment; some have what seems to be an easy time: divine wisdom will secure its end in different ways in different characters.
    Grace be with you - and keep trusting!


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