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, July 20, 2012

Patient Advocacy and living with chronic health issues.

Have you noticed that my blog still hasn't made any new construction changes again? Imagine life without making plans that you can stick to. Imagine it on a daily, weekly, monthly and yearly timeline. It's frustrating. That's what it's been like for me for the past 14 years of my life and for the many people that live with unpredictable diseases. I'm not complaining or looking for sympathy just simply stating a fact that causes us nerve racking frustration and emotional roller coaster rides. Oh well, tomorrow's another day.

Two months of health hell has blurred my focus.  It's challenging to accept the plethora of symptoms, tests and treatment options that is my reality.  Cryoglobulinemia has come back in force and driven me into survival mode.  Cryo first appeared in October 2009 and here I am July 2012 starting the whole process again.  I sometimes lose hope when I think about the unknown that is before me. Rare diseases generally have no standard approved treatment protocol.  It feels like a guessing game!  Sadly, my guess is that it is going to be another tough road.  I really don’t want to travel down that road again but … I do know I that in spite of my fears I have clearer vision this time around because I’ve visited this road before.  It is not the foreign road it used to be!

So how do you find clarity when life becomes more complicated? For me it is part of the process.  I try to accept the possibilities that who I am and what I am experiencing is exactly how it should be. My yogi brain can sit with this positive form of healing information but not when I’m a complete basket case!  The process when dealing with life threatening diseases is one that involves a regular mourning process. These are my thoughts as a trudge through the rocky road praying that the open highway is around the bend.

  • Accepting that the invader visiting my body is not a beast; it is simply a foreigner.
  • Letting go of the realization that any plans for the near future may not come to completion in my time frame, if at all.
  • Awareness that each day I live is going to be a full time job to mentally survive.
  • Physical survival means paying attention to mindful body scans, staying strong without infringing on the loss of energy, deciding do I or don’t I push through debilitating fatigue, mental fog, and pain.
  • Finding balance between false hope, hope and reality.

Wouldn’t it be lovely if my blog was as perfect as I envisioned, I were delivering all the information I acquire and sharing it via Social Media.  If I could fulfil my diary of thoughts everyday.  I hope for this not only for myself but for those who are on their own personal journeys. Wouldn’t it be lovely if I could power through my obstacles as a rare disease patient, an advocate and just get the job done. But, I can clearly see that this too is a process.  I must be accepting that these stops along the road open me up to important lessons.  

  • I get to slow down and stop being a Cryo champion and just be content with what is exactly before my eyes.  
  • I must refocus and recognize my purpose as this woman with a strange and rare disease who doesn’t have to fulfill my old self vision: my persona of superwoman.  
  • It’s a lesson in letting go of dreams that may never happen and places I most likely will never visit.  
  • I am continually trying to shed my ‘false’ layers.  I must get rid of layers I no longer need and face the layer that is before me each and every day and being OK with what I’ve been given.

I am learning through this process that I must give myself credit because I am courageous on most days. I’m learning how to be compassionate with myself and with others.  I’m letting go of who I think I should be before my peers.  I am trying to become truly genuine on this not so new journey.  But, I feel most importantly I am finally embracing my vulnerability.

Life is tough but you have to hear the music in the background to stay in the game. This weekend I'm listening to my husbands old rock and roll band of 39 years ago, in my garage. Now if that doesn't take my mind off my stuff what will?

laughingNana-I CARE because I'm Rare


  1. "Thy refuge is the God of old, And underneath are the eternal arms", Deuteronomy 33: 27.
    "For the rest, brethren, be strong in the Lord, and in the might of his strength", Ephesians 6: 10.

    Easy for me to quote, I know. Trust you are encouraged and given grace for the day.

  2. So kind of you to leave a comment and remind me of the strength given to me each day even in my days of despair. Thank you for being my angel guide today.

    Blessings of joy and peace,
    LaughingNana-I really Care


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