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.

Tuesday, March 13, 2012

Rethinking the loss of oneself.

This is the first short blog I am posting as I catch up on the last 15 months of my life living with Cryoglobulinemia.

It's important to realize that everyone is entitled to a pity party as situations arise in our lives especially when illness incapacitates normal living. The poor me attitude gets us no where. It simply boils down to two choices. Either you say, these are the cards I've been dealt and no matter how bad they may look I'm going to  play them the best I can, or you give in to letting your mind take you to dark places of negativity. What are your chances for happiness then.  I chose life, freedom from doom, possibilities for tomorrow.  I do understand that the human body can only withstand a certain level of stress and eventually the nervous system breaks down causing emotional issues. I've been there in my most difficult years which have been many. In situations like this I agree we may need either counseling or medical intervention or perhaps a crazy night out with a bunch of friends. These times don't have to last forever.  They are just brief moments in time that we learn to rise above if we choose.
First let go of all the negative things that rattle the mind, that being the things that remind us of loss. Then restore our minds with the opportunity of inventing "a new me". There is a Buddhist saying, "You become what you think". I have learned to rethink the new me. Because my state of "wellness" has changed that does not mean that I have changed. I am still the same person with physical limitations. Notice I did not say my health problems. So important. I can not let my physical limitations stop my life. As a sit quietly and let go of the loss,  pain, frustration,  fear, and allow the past to leave my mind and my energy body I now can open myself up to new possibilities. I once was, by title, a personnel trainer, body builder, athlete, yoga instructor, sales associate, sales manager, landscape designer, nutrition counselor.  That does not determine who I am today.  Today I am free from titles. My door is open and the breeze continues to bring me friends, teachers, mentors, opportunities, love and the ability to see that I still am Me but my exterior has changed. I will always be a devoted wife, mother and nanny but my first priority is finding the peace and joy that enthralls me to become a better me. In my lowest times I held desperately onto Hope but now my visceral reaction has become Determination. 
I am determined to find answers for others suffering with this rare disease Cryoglobulinemia. I will find support and help lead the way to a community just for our disease.  Sitting alone at home with a rare disease is frightening because you know you aren't going to get a set of text book answers.  You may not get answers at all. Finding a doctor who understands a rare disease is a big undertaking. Finding an approved treatment is almost unheard of. But we never give up hope.

 We may be Rare. But we are Strong.

Sending healing thoughts to all.

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