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.

Friday, December 31, 2010


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. 

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,
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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.

Sunday, December 26, 2010


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.

Monday, December 20, 2010

ONE GOD Barbra Streisand Johnny Mathis, vocal

For those believers, I know this will touch you and fill you with the living spirit of light and healing.
There is no getting around it, we are one in spirit one in heart.


So many emotions, feelings, travel thorough us especially at this chilling time of year. Do you know what you believe in? How important is it to you or are you just to busy to even worry or think about it.  I'm not here to judge,  just question. I wish someone would have asked me that questions many years ago so I would have realized how important it is to search for something, someone to believe in. No one has to agree with you. No one has the right to judge you for your discoveries. But life is clearer when we believe.

Thursday, December 16, 2010

DIVINE HEALING-DIVINE LIFE.....acceptance of what is!

Where is the Divine in your life? Where is the Divine in mine? How do we picture in our minds eye that which is beyond our understanding? Why is life so difficult even when you follow the rules of life, the understanding of Divine intervention? So hard I have tried to accept what is. It shouldn't be this difficult to be all that is within me. It shouldn't be this difficult to be the I Am, the selfless person that wants only to be one with all. How impossible it feels TODAY to be that soul that sits with the Creator, in complete understanding of acceptance, compassion, unconditional love. WHY? 


As my mind wonders through the thoughts of all my readings, teachings and exposure to what is, I sit and say, "Divine Creator what now?" How do I step into tomorrow without fear, anxiety and worry once again.

Yesterday, I received blood work that was less than acceptable for a clean bill of health. Although the test results say that I am not healed of this disease or even in remission, I believe I AM HEALED.  I was not mentally prepared for the results, considering my body is functioning much better. Even my doctor is confused about the direction we should take, not knowing what to do with this rare disease. The Chemotherapy didn't work. What will tomorrow bring?  I have never been more determined in my life to believe in what I know in my heart feels true.  The Divine has put me on a journey in search for that pure soul that lives within me.  Through sickness and in health I will never stop seeking the truth or stop believing in the healing power of the mind.

When I started this one year journey, I got caught up in the business of my ordinary days. Feeling well, I started slipping into the fires of nonsense. Missing my meditation, not stopping to praise the day and the miracles ready to unfold, I easily slipped into the merry go round of mindlessness.  My body was well yet my mind and soul felt the sorrow and loss of peace. Yesterday was a wake up call again from the forces of this universe. Today I  refocus my thoughts and actions and turn the corner once again seeking healing of both my body and my soul. I offer this day to the Divine knowing I will always be heard. I accept what is and will continue this journey of pure determination knowing the powers of connectedness will continue to guide me each day of my life.

In God I trust,

Wednesday, December 8, 2010


I love this sign. When I saw it I felt like a little kid. I wish there were more signs around us like this that said; LOVE, PEACE, PATIENCE. Just as a visual reminder for the times we are out of balance.

I came to this neighborhood today to meet a women that has Fibromyalgia. I lived in this area  many years ago. Somehow we are always coming back. It felt comforting to be in a place that I could recall so many wonderful memories and unfortunately some very disturbing memories. Anyway, our plans were to do a gentle yoga class and then just sit and have tea and chat. Time to share our stories and support each other. Two people creating community. 
Wellspring Center for Yoga and Health in Merchantville.
Myself, Elaine and my new friend Cheryl.
YOGA, one of the many things I love in life. Oh, how it can change you through the practice, stillness, inner work, spirituality.  The benefits are a thousand fold. Today was my first day back to a studio, on this one year journey.  Elaine, our instructor,  spoke about Light today. She mentioned how this Season is the coming of the Light of the World. She reminded us of the Light that is within us, although so many times depression, anxiety and fear engross us in our own darkness.  I am surrounded by the most brilliant Light I have experienced in a very long time. The days change drastically from one to the next. Never knowing who I will meet, what I will discover, what I will experience is emotionally draining and exciting. It's quite overwhelming and challenging. It has been many years since the world is my playground. My job now is to find the balance in this healing process so that I can walk in the Light of peace knowing that whatever happens I will survive and grow in whatever comes my way. 

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.

Thursday, December 2, 2010


My first day at Bell's Bodies. 

Just met Nick today. One of the 8 new people I've met this week. What a thrill. Besides people from the medical field I haven't been well enough to socialize.
This is Chris from Bell's.  I have a long way to go to get re-conditioned. I'm in no hurry.
I am just happy to be alive and well.
Praise God!

I would never have thought I would be in this place last year this time. It is as if I have been granted my own special miracle. Speaking for myself, I have taken my many blessings for granted. During the course of time living with my health issues I have developed a greater appreciation for the gift of each and everyday. I believe I am more present to people, more understanding and more forgiving.  I've learned to stop judging and taking everything personally. I'm still working on that.  Life is not all about me! Life is what I can do for you.

The level of my spirituality has skyrocketed.  I always believed in a God. Now I understand the term I Am. I Am a part of this incredible universe and I am not doing this alone.  The inter connection of our bodies and souls carries all we will ever need to truly heal physically and mentally. I have learned to experience and listen to my soul. Enjoy the peace of stillness.

Today was an amazing day. I felt alive again able to accomplish in one day what would normally take a week. At the end of my afternoon I had the priviledge of picking up one of my grandchildren after school.
This is Johnny. One of 4 grandchildren.  He was the cream on the top of my day.
So just remember;
You are valuable just because you exist. Not because of what you do, or what you have done but simply because you are." -Max Lucado. You are all uniquely valuable. A disease limits what you can do but it cannot limit who you are or your value as a person. (A quote on my Facebook)
Dig deep, search for meaning, pray for others, read about the many souls that walked this earth to share their wisdom. Acquire knowledge. There is more than one way to heal. Begin the journey of self discovery. "Ask and you will receive" Jesus Christ.

Read, read- read! Watch U tube for inspiration. Follow an athlete and discover what determination is. 

Never feel sorry f or yourself. It's a waste of time and emotions. Rise above the challenge.  Healing is finding peace with what is.

Wednesday, December 1, 2010


As I was walking on the treadmill today, I began to think about the treadmill of life. When you haven't experienced a traumatic event in your life unfortunately, sometimes, we don't take the time to reevaluate where we are and why. Perhaps we recognize the presence of our physical bodies but don't NOTICE that we are on the treadmill of life.  Are we looking for the turns in the road? Are we sometimes caught on the merry go round. Do you hear yourself screaming in your head, "let me off of here".  Do me ever stop and just notice. Is it easy to relax and enjoy solitude, nature, the absence of electronics?  The treadmill is definitely a boring method of exercise for me. Just one foot in front of the other going  nowhere fast.  Maybe it's time to Wake Up each and every day and take the time to be a witness to life.  A writer I enjoy, uses these words in his yoga of life;" breath, relax, feel, notice, allow."

I met my cardio goal for the day of one hour. Since I am exercising for health I realized how important it is to be non-judgmental of my accomplishments.  I can set my desired goal that I think I can achieve but as I was noticing the speed in which I was walking  thoughts started rising through my head. I'm going so slow.  I should be able to do better than this speed. What if I don't meet my goal today?  I had to stop and remember what I was doing and why. Who am I doing this for, anyway? Are you going to judge me? Is anyone going to judge me?  Life isn't meant to always be a constant  competition. There's a time and place for competition but not in our everyday lives.  Can I accept where I am in my life? Can you?  Can I place my intention before me and let it happen? Can you? 

Can we put one foot in front of the other each day and be present to our direction, our steps, our body language, our thoughts, our soul?  It takes practice each and everyday. Yoga/Union.  Body, mind and spirit.  Peace


I have been in remission for 9 weeks now with almost no signs of the disease I have been diagnosed with this year, Cryoglobulinemic vasculitis. I was treated with one month of high dose steroids and chemotherapy.  It appears the culprit is either hiding or vanished.  Only time will tell.  Due to my weak immune system I am susceptible to just about any virus, etc that is floating around.  One week ago, I thought I had pink eye. I ended up at Wills Eye Hospital with a virus in my eye that caused an abrasion on my cornea.  Lots of pain for several days but once treated I have had great progress.  The eye specialist said that I will have to be on yet another medication due to the fact that I can get this eye virus at any time.
One month ago my Doctor told me I could start exercising again, not to lose weight but for my head.  I started slow in my home and started watching everything I ate.  I am happy to say that I have lost 6 pounds so far.
Today I am on my own for exercise.  I will attempt to do 1 hour of cardio on the treadmill. Now I will start tracking my speed, distance, and heart rate.  Within in 3 more weeks I hope to have a goal for both time and distance.
I'm sure I can find a chart to add to my blog.  That's a question for my kids to answer or anyone else than wants to contribute.
Last night Chris(husband) and I spent an evening with Deepak Choprah. I have been following his work for many years.  For those with analytical  minds you would have love his facts and and graphs.  The lecture really left you wondering why we do the things we do. Why are we always doing and not just being.  One of my favorite lines he said was "you are the creator of your own happiness".  And "our intention is the the beginning of all results that filter back into our lives"  My intention is to touch those suffering as I have and help them open the doors to happiness.

Tuesday, November 30, 2010

Official Day 1-Entering the world again after illness.

This morning I sat at my computer and tried to imagine where to begin. How do I explain 12 yrs. of up and downs, doctors, test, fatigue, days on the couch, anxiety, panic, despair, loneliness, pain. Is it even necessary. 

 Right now I want to start  my first day with a first class outside of my home. I believe that the windows and doors to life open to us. When we start banging them down we usually are on the wrong path. On FB I saw my friend Mary Start doing a boot camp class with her friend Marv.  Long story short, I found out it was with a company called Bells Bodies, owned by Chris Bell.  We spent a lot of time talking about my health issues and my shear determination to get out of this house and try to become whole again. I knew the window opened for we and I said yes to training with him.  I also said yes to taking a class at Tambussi Studio in Westmont.  When I heard where the class was being held I knew another window opened because years ago I taught a dance class there for the school, John of God for handicapped children. 
Here I am at Tambussi's Studio for my class. I was able to keep up about 85% of the time. But I did it. These are the friends I met on my first day.

                                           A haven from my past.
 I think I remember all the names. Amy, Molly, Beth, Me and Rachael.  My first group of women to work out with.
This is Cindy. She teaches ballet at Tambussi's. I was excited to see an old friend.  Although she wasn't in the class she was a women from my past. We practiced Yoga together at Royal Courts.  She is a beautiful woman inside and out and a wonderful dancer.  So happy to be out there again. Thank God!


Although this is not very clear it is the ending segment of my son John's completion of his first Ironman.  This year as I struggled with a rare blood disease my word of confidence changed from Hope to Determination.  Besides my husband and family, John has been my inspiration to achieve my  dreams. As I watch him train for numerous hours, I found the inner strength to start again on the road to recovery, both mentally and physically.
Twelve years ago my goal was to be a professional body builder.  I made it to amateur. And them all hell broke loss in my life. I was 47 yrs old and in the best shape in my life. Strong, ripped and confident.  That very first year I lost my job as a trainer, my sport, my friends and organizations. I felt like I lost me. I did lose me.
Following is a short article I wrote for the Arthritis Society about my life with Fibromyalgia and Chronic Fatigue Syndrome.  The time period is about 1 year into living with this new disease.


  There are many details about tests, medicines, doctors, supplements, pain, lack of sleep, and a list of others situations to elaborate on.  At this point in my life the details serve no purpose.  If I could help just one person deal with this disease in a positive way then all of my suffering has not been in vain.  I truly am happy for all I have experienced though this year.  For without it I would not have been able to see all that I was missing and the necessary changes that were meant to be made in my life.

 I have learned more about life, people and myself than I could ever have imagined.  Now, I realize that I have so much to be thankful for.  I feel as though I am one of the lucky people in this world because I was given the opportunity to stop dead in my tracks and re-evaluate who I am, what my life is all about and where I want to go for the rest of my life.  I was taken off the vicious merry-go round and placed in a protective shell.  Within my shell a transformation happened. I have grown into a much healthier and simpler human being in mind and spirit.   I realized that all things have a purpose and that something positive generates from all negative.  I began to enjoy the present moment and stopped focusing on the future.  I began to accept help from people around me and realized that it is nice to receive.  I stopped controlling and allowed LIFE TO JUST BE. The world around me became a vibrant beautiful garden rather than a world filled with errands, chores and responsibilities.  It became my loving nurturing friend, one to whom I never have to prove anything to.  Competing, excelling, explaining, accomplishing were needs that began to dissolve.  Instead, a Spirit arose in me and showed be the meaning of peace, stillness and silence.  Within the comfort of this quiet darkness I began to listen, hear and respond to the meaning and purpose of my life. Like a snake shedding its skin, I am working to shed all that I no longer need in my life and all the parts of my life and myself that drained me of my energy.

I thank God for this experience with Fibromyalgia.  Although it is a daily struggle living with Fibro., one in which I have no doubts that I can handle, I take each day as a gift and open it with reverence and gratitude. For without this experience I would have missed the marvelous journey that I was intended to claim.