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.

Sunday, April 1, 2012

I wonder what will be in 100 years.

Friday March 30th, 2012 was my 10th week anniversary celebrating the beginning of the recovery of my body. I was waking up after three long years of illness. That Friday, I went about my day like any other day but something felt different.  There was a bit more oxygen in my muscles, my mind was clearer, my heart was lighter.  When the time was drawing near to bedtime I realized it was the first, almost normal day, I had in three years.

It was an incredible feeling as my body and mind started to feel a new sense of wholeness.  I felt elation and gratitude as one day led into the next realizing that my main concern was not on my health but regaining a lost life. I was rejoining the circle of life in a way that I so desperately missed.

In October of 2009, I received a call from my rheumatologist that my blood count was extremely low.   My doctor feared that I had internal bleeding and so I began the testing process.  My nightmare began when the doctors could not find out why this was happening.  Added to this new issue my kidneys began to decline, I developed a distinctive rash on my legs, my autoimmune system was going haywire causing infection after infection, a lump surfaced on my arm, tensions was rising, testing and testing, blood infusions were numerous, biopsies and yet no answers.  My body was failing yet there were no answers.  The doctors at the mayo Clinic in MN finally diagnosed me with two rare diseases, Cryoglobulinemiua Vasculitis, in July 2010, along with a host of other complications.  During the course of the next three years I fought for my life.  After two separate rounds of chemotherapy, I’m starting to face each new day with a smile of hope for a future of wellness.

It has been 13 years now since I let go of my former life when autoimmune diseases attacked my body.  It began with Lyme disease, fibromyalgia, chronic fatigue syndrome, rheumatoid arthritis, Raynauds, thyroid disease, anemia, hormone imbalances, just to identify the main diseases.  I was living a healthy lifestyle, eating right and exercising at the time.  Most people called me a health nut.  In fact, my career was in health, fitness and nutrition.  What was the benefit I often ask myself? What causes disease to attack a seemingly healthy body?  Why did I have to let go of all the things I loved so desperately? Why was I always sick, so weak, in so much pain and never able to regain my strength long enough to reenter the life I once knew?  My husband and I tried every conceivable treatment to help my body regain strength and wellness but to our disappointment, it never happened.

Just when I thought my medical condition could not get any worse, to my utter surprise my health desperately decline in 2009.  We knew that I was seriously ill, my disease was life threatening and there was no allot that was know about my condition.  It was frightening not knowing where this rare disease was leading me.  This fear is one that millions live with every day.  A whole new world opened up to me when I found other people living with rare diseases on social media sights all around the world.  Now I sit day after day in conversation with this new world.  I know that I can make a difference in at least one person’s life by sharing my life experiences living with chronic illness and learning to cope with my rare diseases.  I will share my stories, my knowledge and my struggles along with my confidence and courage to live my life as rich and as full as I believe is possible.

I have learned so much about life on this journey living with daily illness and count my blessings that I view my live with a cup that is always full.  I can honestly say that I am fortunate to have been removed from the merry go round of life, to have had the opportunity to look within myself and see what I call the quiet voice of my soul.  I’ve embraced the philosophy of the east and honor myself in spite of the fact that my body is ill.  I have learned that I am not my body and I will do everything I can to understand what I can do to heal what hurts.

This is a brand new chapter and a powerful one for me.  I’ve been told I’m in remission, whatever that means.  Basically my doctors do not know enough about my illness to tell me what tomorrow will bring.  But, I do not need to know about tomorrow because my focus is on today.

There is so much that is unknown, in this year of 2012, about these mysterious diseases that are affecting society.  So many children are suffering with no treatment.   Why?  Is it the environment, global warning, toxins, fake food, pesticides, additives, preservatives, antibiotics, contaminates, medications, processed food, WHAT?  How have we gotten to this point?  How long will it take society to clean up this toxic world?  The question is actually what we do not know.  Where do we start undoing the damage done to this once pure and clean world?  We are progressing in this 21st century but how long it will take before we end this epidemic threatening the lives of society, zapping our life energy needed to maintain an average life.  It have been said in Buddhism, it takes a thousand life times to undue all that we have created within to rediscover our true selves.  How long will it take mankind to clean up our toxic world and restore health in the human body?

I just ask myself these questions because I’m not a scientist, a doctor or and educated person that would understand things beyond ordinary living.  I know the basics of clean living and it hadn’t worked for me.  There are too many other factors that clearly are out of control.

Now I’m awake again, able to think clearly and process new information, I am learning so much about social media, how it is connecting the dots between sick people around the world, patients like me, the medical industry, legislation and research.  It is and endless web of people meeting people, and that continues into not only medical issues but every aspect of life.  It’s exciting to watch and I pray that the lines that are connecting the dots will someday bring us to a better, cleaner and healthier world.  I want to engage my energies into this powerful grassroots movement in hopes to create awareness to this complex mystery of health.  It is my intention to empower those living with chronic and debilitating diseases to observe themselves as a person of wellness not just a broken body. Through mindful awareness, we can live a life of wholeness in ways that some many never have imagined.  The Buddha once said, ‘what you think you become”.  I will not become disabled in my mind or in my spirit.

The miracles that will take place within the medical field in the next 100 years are beyond my comprehension. I imagine cruelty to animals will be extinct, we will swim in crystal clear waters, the food we know of today will no longer be contaminated with poisons that destroy our immune system, pesticide will be a term no longer in existence, the emphasis will totally be on wellness not illness, the medical field will be one of solidarity with holistic care being in the forefront, our bodies will be clean.  Is it is possible?  All things are possible in and through God but what about in the hearts and minds of mankind?  Will the global connection of all beings someday lead us to a healthier life style where disease is nonexistent? I wonder.