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.

Thursday, February 24, 2011

WAS I GRANTED A MIRACLE?

It has been a long time since I have written. To my surprise I had several setbacks this years. I have been back and forth to doctors since I last posted. In January I was admitted to Cooper Hospital with a new health issue, congestive heart failure and a weakened heart muscle.  When I left the hospital I  ended up with pneumonia.  It's taken a lot to get back on my feet. I believe first in God and second in myself so I know I will always get through the crisis. 


My daughter is delivering our first granddaughter on Friday. That is our 5th angel. That in itself has kept me treading hard through the storm.  Although I do believe the Lord is the one who carries me.


I prefer not to read blogs that give tons of details so I will get right to the point.  This rare blood disease (Cryoglobulinemia)that I now live with has been quite a challenge since it has been a very cold winter here in NJ.  I can not be exposed to cold temperatures. Therefore, I have become a hermit. Friday I was supposed to start six more five day treatments of chemo.  I have to admit that I was not handling the time frame very well with my new grandchild on the way. Six rounds over the course of five months is a long time to be down again.  I'm almost standing and I feel the bowling ball coming at me to knock me back down.


Two days ago I called my oncologist to find out the results of my  blood test. He was testing to determine if I still was in remission. It came back negative. My doctor was sure it was going to be positive. Everyone is aghast.  Chemo is cancelled for Friday and I wait until all the doctors confirm that this is really possible.


What is it? Faith, hope, prayers, a real miracle?  Does God really test us to our limits? Does this strengthen our faith so we can spread the good news of the Lord and give others hope? Is it just part of the cycle of life. Good verses evil. Nothing last forever. Why? Am I more courageous today? You bet your butt I am. Do I want to spread hope, reassurance and inspiration? Definitely. Why is life so difficult? Why so many challenges?  Did God make this life so difficult so we would search Him out? Or does life just have it's ups and downs. 


How come some people just seem to breeze through life without any real tragedy?  I've always considered myself a selfless person having compassion, lending forgiveness, searching harder and harder for my higher power? At the same time witnessing my shortcomings.  And yet I have had more than my share of serious struggles through my entire life? Why?


As I sit and ponder and question I sit in awe that I may have been granted another miracle. Do me realize all the miracles we receive in life?


I pray today you receive at least one small miracle or at least you feel the spirit enter your heart.


Love and blessings to all,


Laughingnana 

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