Alliance For Cryoglobulinemia

Alliance For Cryoglobulinemia
You Are RARE But NOT Alone

About Me

My photo
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.

Wednesday, September 26, 2012

Departure for Stanford Medicine X

Anticipation and fear fuel me as I hear the engines roar and I feel the plane in motion.  So long I have hovered in my quiet, small world, nourished by my family, close friends, healthcare providers and internet friends.

Leaving my safe place after three years is exciting and frightening, as I venture into a new place leaving my cocoon of protection, my home. I realize how safe I feel in my little hut of protection after this three year journey of the unknown, living with a Rare Diseases.

Who will care for me in a new location in California?  Will the doctors understand my needs if my health fails me? There are so many what ifs I face that no one understands. 

Because Stanford Medicine X said yes to my application as an e-Patient scholar I am traveling across the country from coast to coast.  I’ve had so many obstacles to overcome beginning with my own health along with my dad’s health.  Building a presence on social media is time consuming yet essential as I search for answers to why I am so sick along with my patient community. 

I am here.  I am taking off the ground and venturing into a new chapter.  Hope tells me miracles happen and remission can be forever.  Fear says, OMG what if your legs swell and you can’t walk, your fatigue is so bad you can’t think when you arrive at this medical conference?

Reality says,  I can handle whatever comes my way because I have a husband that will do anything for me, a family that won’t allow me to feel sorry for myself and God to give me the wisdom and  gifts needed to be all I am meant to be. 

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!     

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