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, January 26, 2011

JOY IN THE MOMENT



HOW MUCH DO WE MISS??????????????????
CREATION
SOMETHING I LOVE...PHOTOGRAPHY


SIMPLICITY


BEAUTY




Noticing all things that bring me joy.


   
ENDLESS







WHAT YOU THINK YOU BECOME

WHERE ARE YOU? WHERE ARE YOU GOING?

Thankful for all that I have learned on my journey.





DO YOU BELIEVE? 
WHAT DO YOU BELIEVE?


INNOCENCE
DETERMINATION!










LOVE


CREATIVITY




UNITY
GOD



COLORS OF LIFE, VIBRANT!



JUST HAVE TO LOVE THE BABIES!










PEACE


CELEBRATION


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I've been missing for a month.

Good Morning Friends,

Although I feel like I have been to hell and back over and over again, I am thankful for the life I do have.  I watch how strong my children have become because of my health issues.  My son has this quoto on his FB page. "We cannot change the cards we are dealt, just how we play the hand"- Randy Pausch.

What an awesome quote. Remember it.  It's all about attitude.  Be a happy survivor.

When I notice how much my son (he's 20) has grown watching me go through years and years of illness, I feel assured that if anything ever happened to me, he has the right attitude to get through his own issues.

Let's all try to have a positive day today.  Think of the blessings in your lives. Pray for those who are less fortunate than us.

Tomorrow is another day so let go of the sorrow of today if that is what you are feeling and remember that tomorrow there is a new sun that will shine blessings on you.  Just be open to what is.  If your life is full of joy than be an angel friend to someone else and offer them your heart.

I missed a whole month of what happened but I will get back to it later.  I just felt inspired to share these  thoughts this morning.

love to all and blessings
marianne

Friday, December 31, 2010

LIVING THE LIFE I NEVER THOUGHT I WOULD HAVE

Outdoor ice skating in AustriaImage via Wikipedia
It's the last day of  the year 2010 and I went ice skating with my husband, grandson, and son-in-law. It's been to many years to recall the last time I was on skates but it was exhilarating, scary, and totally awesome. I intend on doing more and more exciting adventures this year as I continue on this one year journey. God ask us to do as the children do. Today I felt that inner warmth of completeness in body and spirit. My life has been so serious with all the medical nuisances. I want to feel the explosion of excitement without anxiety, fear or regret. Although I know I am still climbing mountains to stay well my attitude is completely different. Maybe it just hit me that I really am getting older. Time is flying bye. I want to really live my life with God as my source of courage and daily guide. 

DETERMINATION
FAMILY
JOY
This is me happy without the fear of tomorrow, no confusion or regrets. No self pity. No concern for anything but the MOMENT.

As I dragged myself through this week I knew I was working with a different power of focus.  My blood volume was very low and yet I focused on my goals, not my illness.  I battled through two strong training sessions with tears in my eyes knowing that if I envisioned the end result I was already there. I no longer want to be a prisoner to what may happen tomorrow.  Today I end this year with motivation to touch the stars and dismiss this inner turmoil of despair. 

I will touch the world with my courage and the world will touch me. I will be empowered to follow the self that I am meant to be.

With loving thoughts and blessings,
Marianne
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Thursday, December 30, 2010

Don't STOP believing in you.

So much has happened over the last month, mostly negative. No that is an exaggeration. It just feels that way in the present moment. I realized in my DETERMINATION I lost my focus on the one solid belief I have, that being God.  How easy it is to get CAUGHT in the turbulence of our emotions and worldly nonsense. How easy it is to lose sight on the center of our being. When you have been captured in the rapture of bliss and then suddenly it is missing you enter into hell on earth. AWARENESS!!!

Today I restart my journey with peace of mind in my heart knowing that what comes first is my presence to the moment. Without it we get caught in a web of misery.  I'm fortunate to have traveled on the path of contentment for extended periods in my life. How awful it is to be lost in the darkness of confusion and forgetfulness. 

I am thankful for the numerous teachers that have shared their experience of peace.
I am thankful that the universe sent me an angel friend from my past to help me through my mind games.
I am thankful for my son who has such clarity that within a brief conversation he can turn my whole emotional dilemma into rational. 
I am thankful for my husband, my hero.
I am thankful for those who have walked before me that continue to inspire me to never give up.

My mindset for today;
Be strong in mind and spirit and remember you are never alone. The Lord is with you. Take your mind off of you and put it on God and watch miracles appear.


Be Determined to make a difference. Be determined to be the change you dream to be.

Walk in the Light of the New Days sun and walk in peace.
Laughingnana

Sunday, December 26, 2010

NEVER STOP BREAKING THROUGH TO THE NEXT CHAPTER

This Christmas Season has brought an awareness to me that is both sad and exciting. Sad, because I am closing a gigantic door on things I believed in. Exciting, because I know in my heart there is a new chapter starting to reveal itself to me. I've cried endless tears from that place deep inside that cries back to you that it is over. It's a new beginning.


I've realized how easy it is to be a humble, loving person when you are ill. And I have been ill for a long time.  I know that the mix of personalities and situations in my new life are more challenging than the years of illness I have been living with. Presently, God is working in mysteries ways in my life but I know when the spirit is with me I am walking into peace and glory along with the fires of hell.  But that is how we shed all the unwanted garbage we have accumulated in a life time. 


So this new chapter begins but the page is not turning easily. It feels more like a gigantic door to a castle that I have to open. A great teacher, St Theresa of Avila, tells us that God's house has many mansions. In each mansions there are many lessons to be learned. I am entering one of the very difficult mansions. I do know when the door is completely open I will discover the challenge I have been waiting for all my life.  This time the challenge is about me. Just me. It's about strength of character, standing up for the things I believe in.  It's about realizing that there are people in my life that I will hurt because of my opinion. For to long I have put the opinions of others above my own just to be accepted, just to keep peace. There needs to be a balance in my internal world so that I don't continue to fill by body with diseased feelings. I have been killing myself by internalizing my feelings and letting the world think everything is OK. In doing so I have caused much damage.


I also want something that I know those closest to me won't agree with because of the fear of my illness. I'm not afraid anymore. I'm 59 and there may not be many chapters left. I want my physical strength back.  I want to feel the passion that drives me daily and fills me with my own inner peace. I want to rise above the ordinary for my age and feel the athlete that I was.  I want to follow this passion and share with those who are weak either physically or mentally to reach inside and find strength, hope and determination to live a full life. 


I've spent the last 12 years of my life devouring information and opinions of scholars, spiritual teachers, gurus. Their wisdom, understanding and insight is precious and profound. But now I want to put away the books and just live my life my way and see how it feels to be me. I want to experience confrontation, attempt new adventures and not be afraid of failure. I want to say NO because I just don't want to and not be afraid to hurt someones feelings. I want to be authentic. I want to throw away all the masks I own and be free to be me. 


Just maybe I can heal myself in this next chapter and be fortunate enough to share my own wisdom. Just maybe.