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.

Saturday, September 22, 2012

It's Scary when I feel well - Moving on!

False Hope is what I experience right after my chemotherapy treatments.  My energy comes back, the dark black circles under my eyes become bright, I can think clearly, walk with confidence, think about tomorrow and begin to dream about the possibility of regaining a normal life again, whatever what means. Prior to the last 14 years, when my health first declined, I truly loved my profession as a nutrition counselor, personnel trainer, and fitness advisor.  That chapter of my life prepared me for what is, a body that has failed the norm no matter how healthy I was. I know how to stay strong within the confines of my home and eat for health not for pleasure because of my prior life.  I am fortunate to have these tools to survive the life of chronic illness.  I worry about all those that aren’t as fortunate as me. When I feel as well as I do today I realize that getting on the plane taking me to San Diego and then Palo Alto for Stanford Medicine X conference is a reality.   I’m so excited to go and participate and learn whatever I can for the rare disease community, but I will bring my cane just in case I start to decline. I will bring my medications just in case I start to flare.  A flare may mean that my legs and feet swell up so much that I can’t walk.  I imagine Stanford will provide wheelchairs, just in case.  It may mean that I will have to sleep up to 13 hours before I can get out of bed for the next conference day.  There is a possibility that I may not be able to concentrate on anything anyone is saying, so I’ll just be present and let life happen as it should. I completed my last chemotherapy treatment just two months ago.   In 6 weeks this very strange protein begins to re-produce itself in my bone marrow and then all hell brakes loose.  No one has me able to explain to me why this happens. Maybe I can beat it this time but in reality I have to be that it is a very strong possibility that my health will decline again and I will be in that place where fear sets in. Why am I fearful? Because, no one understands what my body is doing and how to STOP it. Kind of scary isn’t it?  I’m scared because I experienced a brief moment in time when life feels normal and I don’t want to let it go.  I just don’t want to be a sick person again. The worst part about having a chronic illness for me is fatigue.  I can deal with allot of pain but when fatigue sets in, life STOPS.  I’m a triple a personality but there are days that nothing, not even my grandkids smiling faces pull me out of that frightening place where my body just won’t move.  Of course I never let anyone see me that way.  That’s when I hide. People usually say, “Hey Mare, you look pretty good today”.   That’s because most people never see me when I am the hurting child, the person that just can’t participate in life.  So today I am well and strong and I’m making plans and hoping and praying that maybe it might not happen again.  Maybe the invader will disappear and never come back. What will I do with all that wellness?  How will I handle it, all over again, if or when it returns?

Looks like I lost my paragraphs? Oh well!     

1 comment:

  1. Hi,

    I have a quick question about your blog, would you mind emailing me when you get a chance?




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