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.

Monday, December 6, 2010

Waking up is hard to do!

Be careful what you ask for! There were so many days when I would lie in bed or on the couch and wonder what the world was doing.  What would I be doing if I recovered. Often times your mind allows you to believe that you are the illness. So I continued to ask, what if?  What would I be doing. Who would I be?  How much of this solitude  would I take with me onto that big gorgeous merry go round. I recall how overwhelmed, frustrated, and anxious I would become knowing I didn't have an identity anymore. It has become the norm to be what you do. I was doing nothing except praying and taking care of myself. I wanted more, needed to prove to myself I could beat the odes. I needed to DO again and do everything, please everyone, prove my strength, courage  my gift of charity, etc. So much goes on in our heads that tells us who we think we need to be. For Who? Why? So many days went bye with feelings of uselessness. I learned so much.

Today I was reading Psalm 46 in the Bible and the light bulb went off. "Be still and know that I am God."  I prayed for a miracle to happen in my life for myself as well as my family. Years of illness puts a drain on everyones lives, especially my husband.  I wanted so much to hold up my part of the relationship. I yearned to be a part of something outside my home. I missed new fresh personalities in my life. I missed greeting my next teacher. Of course I missed all the physical enjoyments in my life like hiking, ashtanga yoga, working out.  Somehow I found power in physical strength.  But it didn't determine who I was only who I thought I was. In the end no one really cares about those things. No one really cares. People that make a differance in our lives care about the person we are inside.

People are looking for compassion, understanding, love, acceptance.  They are looking for the God in you to shine. People need light. I need light. We all need the light of the world to shine on us and bring us peace. My Creator and especially my husband were the shining Light in my life.

"Be still and know that I am God. We all have the capabilities if we listen hard enough, sit long enough and pray long enough to be still and FEEL the God in you.

When I started this blog I started with  so much enthusiasm.  I began to realize as I wrote that I was losing some of the most precious gifts I have received during my years of illness. I wasn't being still anymore. I wanted to do, do, do.  As I began to interact within our busy world I found myself less content. Dealing with so many personalities was more than overwhelming. I found myself in tears one night as I realized all the stuff I had to deal with again.  I thought I was prepared. After all I had 12 long years of stillness. I had time to read, pray, meditate, notice.  I was the observer. Now it was time to put my practice into life.

I am disappointed in myself when I watch and recall what I have felt about other people and situations in this short amount of time. I have found myself praying for forgiveness for the thoughts that have passed through my head. The words I have thought unconsciously. My inpatients with those I am interacting with is less than acceptable. 

It's easy to love the people we love. Not so easy to love the ones that are a sword in our side.  We know real love when we can do both. Can I do both again as I traverse this new life? Life really is hard to do!

I came across this thought as I was flipping through Spark People.

When having more leaves you
empty, you discover true
happiness lies in enough!" 
Bob Perks

The light bulb was flashing in my head. What a great quote! Looking back on my years of dealing with constant health issues, many times I didn't realize that I was full. Full of the grace of God. Full of the goodness in my heart. Full of peace.  My desires were limited to just getting through the day without being a burden to someone else. My dreams of travel and fitness and being someone of importance again disappeared.  I was someone who was full. I was happy with enough. I was still in the quiet of my soul. That is a miracle in itself.

Now I am filled with so much enthusiasm about life. I believe this is a natural feeling going through transition like this.  But as I work on my physical strength I realize that no matter what state we are in physically we always need to stop and find time for the stillness. Immediately I have gotten snatched up in the net of business. My heart, my mind and my soul no longer are experiencing the miracle of stillness. I realize I must work on balance.

This has been much harder than I ever expected, this transition. Lights are brighter, sounds are louder, people seem less sensitive. My head is pounding.  Everyday is FULL to the top with STUFF to do. It's exhausting.  And I thought I was in fatigue before. Be careful what you ask for!

I know today I need to refocus on all that I have learned and put it into practice in my new life. I need to breath, relax, feel, notice and allow all that is. I need to take the many lessons I have been given and integrate them into my new life.

This is the reason for my healing. This is what I am thankful for!
As I continue to pray for you I ask for your prayers so that I can be a true example of the Light of the World.

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