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.

Saturday, August 27, 2011


Let me give a quick update on my health issues since February.  Kidney failure, heart disease, vasculitis and severe anemia have all been unexpected problems this year.  Because my immune system was so compromised I was seseptable to infection. The complicatons included phenumia, ear infections, herpes of the eyes, vertico, blurred vision, tinitus (constant  ringing in the ears). This all led to anxiety and panic attacks. While all this was taking place I also was receiving regular blood transfusions due to the anemia. My energy level was about 2 on a scale of 1 to 10. In April my doctors determined that I would have to start chemotherapy  again.  This time it would be more intense then last August.  On April 29th I began  treatment of  high doses of steroids and Rituxan. This was followed with 5 days of oral Cituxan chemotherapy. If I thought I  was sick prior to the chemo was I ever in for the biggest surprise of my life.  It only got worse.  I felt as though each and every chemo pill I swallowed was killing me more and more each day. The panic attacks were controlling my life.  The fear was mind boggling.  Each day felt like my last. My world was ever so small just lying on the couch day after day waiting for some kind of relief. The doctors were not offering me the hope I was looking for. I needed to do my own work if I was going to find the hope I needed to survive.

To my unexpected surprise, with my strong faith, trust in God, my best friend and husband Chris, my awesome family and close friends I began to regain my strength.  I started having what I call "peep a boo moments" when I felt very brief glimpses of relief.  Half way through my treatments I began to feel hope again.  There was hope stirring in my soul and determination brewing in my spirit.  I recall on one particular day when I felt a change in my attitude.  I knew I had to beat this sheer craziness I was living. Hour after hour I repeated in my mind and sometimes out loud, "I am happy, I am healthy, I am one with the Lord." My attitude began to change. I insisted that my husband change his attitude.   We weren't going to look at every little set back as the end of the world and possibly the end of my life.  We were going to change our minds and change our lives.  I have a statue in my Zen garden that reads, "what we think we become".  Did I think I was going to die? Sometimes I did. I saw my future as just one health issue after another. I was excepting the fact that this was the only life I would ever know again. My body and spirit became helpless. I lost hope because day after day things became worse.  Of course if you have never experienced losing control of your body, mind and spirit it definitely is a frightening journey. It was time to change my attitude and change my life.  By the Grace of God I began to rise above this torment. Moments of relief and healing turned into hours and then into days. My test results began to improve along with my energy.  Yesterday, August 26th was my last treatment. I walked into the treatment room full of energy and hope knowing in my heart I have been given another chance to live my life with a vibrant healthy body and spirit.  Never question the resilience of the human body, the power of the mind and spirit.

It is our responsibility to walk away from every challenge in life with a powerful new positive attitude. Know and believe that in each and every hurdle we encounter there is a wealth of knowledge we receive to carry us through our next pathway.  Never allow the  difficult times in your life determine your  future.  They are the stepping stones to your future happiness.

If you or anyone you know has Cryobolbulinemia Vasculitis please contact me on this blog.

Sunday, July 31, 2011


Hi to my fellow bloggers. I'm redesigning my blog template today and plan to start posting again hopefully by tomorrow.  It has been since February since I have been here due to a variety of complications with my health. For the last month or so I have been catching up on life, getting things back in order, sorting, filing, cleaning, organizing.

I am happy to say that I am in the Waking Up Stage again and having been here many times over it takes time to reconnect to ever aspect of life.  Although it is a slow process it is a welcomed stage to be journeying through.

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,


Wednesday, January 26, 2011


HOW MUCH DO WE MISS??????????????????



Noticing all things that bring me joy.




Thankful for all that I have learned on my journey.










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I've been missing for a month.

Good Morning Friends,

Although I feel like I have been to hell and back over and over again, I am thankful for the life I do have.  I watch how strong my children have become because of my health issues.  My son has this quoto on his FB page. "We cannot change the cards we are dealt, just how we play the hand"- Randy Pausch.

What an awesome quote. Remember it.  It's all about attitude.  Be a happy survivor.

When I notice how much my son (he's 20) has grown watching me go through years and years of illness, I feel assured that if anything ever happened to me, he has the right attitude to get through his own issues.

Let's all try to have a positive day today.  Think of the blessings in your lives. Pray for those who are less fortunate than us.

Tomorrow is another day so let go of the sorrow of today if that is what you are feeling and remember that tomorrow there is a new sun that will shine blessings on you.  Just be open to what is.  If your life is full of joy than be an angel friend to someone else and offer them your heart.

I missed a whole month of what happened but I will get back to it later.  I just felt inspired to share these  thoughts this morning.

love to all and blessings