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.

Wednesday, October 22, 2014

 I can't breath! Emotional Breakdown

Was it my mind or my body that fell into the abyss of no return? Was it both? What happened? Where did I go?  It felt like I fell off the universe into a dimension of darkness I didn't know existed. Was it insanity, craziness, mania, hysteria, delusion? I could hear the voice of my husband but I couldn't find him in this place called hell. I frantically raced from room to room trying to escape the madness that was me. How do you run from yourself?  Where do you go?You disappear from what you know as self and let all pain gush through ever pore of your body, mind and spirit. The darkness shattered all possibilities of rational as my body cried for help. I continued to get lost deeper and deeper into nothingness where there was no me, no us, no love just gut wrenching pain and loneliness.

But why? Will anyone be able to explain to be why I broke? Modern medicine can't explain why I live with this rare disease, cryoglobulinemia. Is it the drugs, is it the disease, is it the prodigious amount of energy and discipline that it takes to keep my head above water to survive? Does living in survival mode for 16 years cause insanity? Or was it simply because I was outside in weather that dropped to 67 degrees? I have learned that my body cannot tolerate temperatures under 70 due to Cryo although most doctors won't agree with me.  But I know for a fact that when I ventured outside that day my body became numb, my ears and head felt as if they would explode until I found the respite of the house just steps away. I made a mistake and took a chance that the drugs were possibly healing me. We want to walk away and pretend, even for just a brief moment that our bodies are not failing us when we live with chronic illness even if it is just for one day.

I was sitting on top of the mountain that I have been climbing for 5 1/2 years, finally getting to experience a piece of life that some would call normalcy. I was holding onto HOPE and the drug Rituxan to give we a piece of my life back that I desperately yearned for. But then the unexpected happen and I tripped and fell and when I fell I broken into a thousand million pieces. After the fall I woke up lost and shatter knowing that I had to put all of the pieces back together again like so many times in the past. It's so hard to start over again when the maze has no exit. I'd like to think that my nervous system was affected by the unexpected reaction to the weather, or was it a combination of illness and life, is it the drugs or maybe I was doing to much in my new reality and on overload? I don't know and no one will be able to tell me I'm sure but I'm grateful that my husband, my best friend and my children picked me up and after only 3 days of hell I'm here writing about what was.

  • Today I will be grateful.
  • Today I will dismiss my madness and focus on healing.
  • Today I will reach out and touch at least one person who is hurting in some way.
  • Today I will start again at the bottom of the mountain and focus on the peak.
  • Today I will only think positive thoughts and not dwell on my fall that shattered my spirit.
  • Today I will find the Creator inside of me, the light that guides me back to acceptance and peace. 

If you fall let someone pick you up if you can't do it yourself. 

1 comment:

  1. How fitting that your falling should be while going up a mountain. You feel and shattered but you were already on elevated ground. You are not restarting at the bottom of the mountain. It may look like it but it can't be true. You must just be in a little valley nestled in amongst all the peaks. And for those who love to see the world and all the people in it, I think it's particularly difficult to be in a valley where it's more isolating and you lose perspective and everywhere you look the climb seems steep and unforgiving... but, you are loved and surround by the embrace of that love from all sides. And though perhaps darker, and damper, and more isolating, hopefully your little valley has one or two bright wildflowers. Sending you edelweiss and buttercups.


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