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.

Friday, September 7, 2012

Stanford Medicine X - Getting Ready

Dedicated to my Dad

How long has it been since I’ve visited my blog?  When I finally opened my last post that said, “under construction”, I realized it has been 7 weeks. I had so many plans for my new life as a health advocate and yet life keeps getting in the way.  Or, am I getting in the way of life?  I’ve always been very goal oriented, never missed a deadline, and have accomplished in most cases exactly what I have set out to do, unless of course my health got in the way. 

My dad has been very ill since July 24th so I dropped everything in my path to care for him. Who wouldn't do that for their dad? This is a man who put himself on kidney dialysis, at the age of 88 yrs, old because he lives an active life. Kudos to dad! I'm so proud of his choice to live. 

Two months prior, I let my work stagger because of my own health problems.  I have been working so hard to prepare myself for Stanford Medicine X. 

What is Medicine-X?
Several months ago my twitter mentors suggested that I consider applying for a scholarship as an e-Patient Scholar to Stanford Medicine X, in California.  It sounded both exciting and interesting but I really had no idea what it was all about. At the time I was like a sponge soaking up everything and anything I could to learn about empowered patients and how to advocate for my rare disease, Cryoglobulinemia.  I followed through with the application and to my surprise I qualified and was accepted.  This was an honor for a newbie e-Patient and a responsibility I took very seriously.  I was now motivated to work even harder to learn all that I could about healthcare social media, global rare disease networks, my disease and anything else that would empower me to be the best e-Patient I could.  Everyday was a new adventure as I traveled through this new world that was opening up before my eyes.  Many times I felt less than adequate like a new college student who never finish high school. I was learning a new language, meeting new people in an industry I had never venture into before.  But I was in love with learning and sharing all that I discovered to help my community. It is overwhelming yet exhilarating.

So I have to ask myself, since my plans haven’t gone exactly as I had anticipated leading up to Medicine X, should I still go?  Am I still qualified? I have not accomplished all that I have set out to do by the end of September for the conference.   My website isn’t up for my rare disease.  My blog has fallen through the cracks. I didn’t start my fundraiser and haven’t been able to keep up with my twitter contacts and friends.  No, things haven’t gone as planned but I still am an empowered patient seeking answers not only for myself but also for all rare communities. What I have learned are life lessons on this detour.

For me, life is about exploring new territory, knocking down roadblocks, adjusting to change, accepting each day as it presents itself with gratitude and reverence and being true to the person I am.

Laughingnana Cares about her Dad

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