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.

Thursday, December 30, 2010

Don't STOP believing in you.

So much has happened over the last month, mostly negative. No that is an exaggeration. It just feels that way in the present moment. I realized in my DETERMINATION I lost my focus on the one solid belief I have, that being God.  How easy it is to get CAUGHT in the turbulence of our emotions and worldly nonsense. How easy it is to lose sight on the center of our being. When you have been captured in the rapture of bliss and then suddenly it is missing you enter into hell on earth. AWARENESS!!!

Today I restart my journey with peace of mind in my heart knowing that what comes first is my presence to the moment. Without it we get caught in a web of misery.  I'm fortunate to have traveled on the path of contentment for extended periods in my life. How awful it is to be lost in the darkness of confusion and forgetfulness. 

I am thankful for the numerous teachers that have shared their experience of peace.
I am thankful that the universe sent me an angel friend from my past to help me through my mind games.
I am thankful for my son who has such clarity that within a brief conversation he can turn my whole emotional dilemma into rational. 
I am thankful for my husband, my hero.
I am thankful for those who have walked before me that continue to inspire me to never give up.

My mindset for today;
Be strong in mind and spirit and remember you are never alone. The Lord is with you. Take your mind off of you and put it on God and watch miracles appear.


Be Determined to make a difference. Be determined to be the change you dream to be.

Walk in the Light of the New Days sun and walk in peace.
Laughingnana

Sunday, December 26, 2010

NEVER STOP BREAKING THROUGH TO THE NEXT CHAPTER

This Christmas Season has brought an awareness to me that is both sad and exciting. Sad, because I am closing a gigantic door on things I believed in. Exciting, because I know in my heart there is a new chapter starting to reveal itself to me. I've cried endless tears from that place deep inside that cries back to you that it is over. It's a new beginning.


I've realized how easy it is to be a humble, loving person when you are ill. And I have been ill for a long time.  I know that the mix of personalities and situations in my new life are more challenging than the years of illness I have been living with. Presently, God is working in mysteries ways in my life but I know when the spirit is with me I am walking into peace and glory along with the fires of hell.  But that is how we shed all the unwanted garbage we have accumulated in a life time. 


So this new chapter begins but the page is not turning easily. It feels more like a gigantic door to a castle that I have to open. A great teacher, St Theresa of Avila, tells us that God's house has many mansions. In each mansions there are many lessons to be learned. I am entering one of the very difficult mansions. I do know when the door is completely open I will discover the challenge I have been waiting for all my life.  This time the challenge is about me. Just me. It's about strength of character, standing up for the things I believe in.  It's about realizing that there are people in my life that I will hurt because of my opinion. For to long I have put the opinions of others above my own just to be accepted, just to keep peace. There needs to be a balance in my internal world so that I don't continue to fill by body with diseased feelings. I have been killing myself by internalizing my feelings and letting the world think everything is OK. In doing so I have caused much damage.


I also want something that I know those closest to me won't agree with because of the fear of my illness. I'm not afraid anymore. I'm 59 and there may not be many chapters left. I want my physical strength back.  I want to feel the passion that drives me daily and fills me with my own inner peace. I want to rise above the ordinary for my age and feel the athlete that I was.  I want to follow this passion and share with those who are weak either physically or mentally to reach inside and find strength, hope and determination to live a full life. 


I've spent the last 12 years of my life devouring information and opinions of scholars, spiritual teachers, gurus. Their wisdom, understanding and insight is precious and profound. But now I want to put away the books and just live my life my way and see how it feels to be me. I want to experience confrontation, attempt new adventures and not be afraid of failure. I want to say NO because I just don't want to and not be afraid to hurt someones feelings. I want to be authentic. I want to throw away all the masks I own and be free to be me. 


Just maybe I can heal myself in this next chapter and be fortunate enough to share my own wisdom. Just maybe.

Monday, December 20, 2010

ONE GOD Barbra Streisand Johnny Mathis, vocal



For those believers, I know this will touch you and fill you with the living spirit of light and healing.
There is no getting around it, we are one in spirit one in heart.
Namaste

LITTLE KIDS ASK, "WHERE IS HE"? CAN YOU ANSWER.


So many emotions, feelings, travel thorough us especially at this chilling time of year. Do you know what you believe in? How important is it to you or are you just to busy to even worry or think about it.  I'm not here to judge,  just question. I wish someone would have asked me that questions many years ago so I would have realized how important it is to search for something, someone to believe in. No one has to agree with you. No one has the right to judge you for your discoveries. But life is clearer when we believe.

Thursday, December 16, 2010

DIVINE HEALING-DIVINE LIFE.....acceptance of what is!


Where is the Divine in your life? Where is the Divine in mine? How do we picture in our minds eye that which is beyond our understanding? Why is life so difficult even when you follow the rules of life, the understanding of Divine intervention? So hard I have tried to accept what is. It shouldn't be this difficult to be all that is within me. It shouldn't be this difficult to be the I Am, the selfless person that wants only to be one with all. How impossible it feels TODAY to be that soul that sits with the Creator, in complete understanding of acceptance, compassion, unconditional love. WHY? 



DIVINE


As my mind wonders through the thoughts of all my readings, teachings and exposure to what is, I sit and say, "Divine Creator what now?" How do I step into tomorrow without fear, anxiety and worry once again.

Yesterday, I received blood work that was less than acceptable for a clean bill of health. Although the test results say that I am not healed of this disease or even in remission, I believe I AM HEALED.  I was not mentally prepared for the results, considering my body is functioning much better. Even my doctor is confused about the direction we should take, not knowing what to do with this rare disease. The Chemotherapy didn't work. What will tomorrow bring?  I have never been more determined in my life to believe in what I know in my heart feels true.  The Divine has put me on a journey in search for that pure soul that lives within me.  Through sickness and in health I will never stop seeking the truth or stop believing in the healing power of the mind.


When I started this one year journey, I got caught up in the business of my ordinary days. Feeling well, I started slipping into the fires of nonsense. Missing my meditation, not stopping to praise the day and the miracles ready to unfold, I easily slipped into the merry go round of mindlessness.  My body was well yet my mind and soul felt the sorrow and loss of peace. Yesterday was a wake up call again from the forces of this universe. Today I  refocus my thoughts and actions and turn the corner once again seeking healing of both my body and my soul. I offer this day to the Divine knowing I will always be heard. I accept what is and will continue this journey of pure determination knowing the powers of connectedness will continue to guide me each day of my life.


In God I trust,
Nana