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, December 8, 2010

FINDING PEACE IN SICKNESS AND IN HEALTH

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.
NAMASTE
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

DAY 1 WITH MY TRAINER.



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

JUDGEMENT-APPROVAL

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

FACTS

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.
FACT
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.
UPDATE
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.