In Recognition of World Arthritis Day: 137/41/54

In recognition of World Arthritis Day, I want to once again share with you my ra onset story and to encourage you to share your story.  Together we can shine a light on ra and make a difference in the fight to find a cure and dispel the myths about ra. To participate, go to the IAAMOVEMENT.ORG 




I was not overweight when I was first diagnosed with ra but instead in the prime of life!  


RA is only one of over 100 types of arthritis currently known.  Getting a correct diagnoses can be a challenge and may take many visits to your gp to determine what is going on and then get the referral to the rheumatologist.

First and foremost…what you are experiencing is real. Don't let any doctor tell you otherwise! Your symptoms are not a figment of your imagination (as many have been incorrectly told), they are not caused by overwork, having multiple children plying for your attention or caused from menopause symptoms and chances are…they will not go away on their own.

I was very fortunate back in 1998 to have a wonderful general practitioner that understood ra and knew the correct tests to do in order to determine what I had. On the other hand, I personally had never heard the term rheumatoid arthritis. Boy did I have a lot to learn! My recognizable ra symptoms appeared in one finger (at least to me). If I remember correctly (heck we are talking 12 years ago) I had what I thought was a possible paper cut infection. At that time several people in Europe had been on tv with a horrific skin infection that took their lives and this was forefront on my mind when my swollen finger wouldn't respond to the OTC medications I tried. 

For the complete story, click here...

Please share your onset story here.  Please help get the word out about autoimmune arthritis.  Together we can make a difference and bring focus on finding a cure.

Imprisoned!

She was studying abroad.  In the prime of her life.  Amanda was enjoying her life in Italy. She was exploring a new world, new friends, new foods. She was at the top of her game and I have no doubt, her mind and soul were souring with the sights, sounds, and tastes of Italy. She was free. So carefree!

It happened so suddenly.  She wasn't prepared for it, she wasn't expecting it and for sure she did not know that it would make her a prisoner.  One innocent day she was taken.  It came for her. From no where she was put behind bars.  Put into a world that was so foreign to her. Put into a world where she barely spoke or understood the language. Thrown into a cold, dark and often very painful and very lonely place that would haunt her for the rest of her life. 

Every day she woke not knowing what to expect.  Would she brought in for interrogation? Would she ever again be able to run, walk, talk, or even breathe like she had done before? Would she ever be able to hug her family without those bars between them? Would she ever be able to return to her previous life? Would she ever be able to be the Amanda Knox before all of this?

At first people didn't believe her. They whispered, pointed and murmured her guilt.  Why should they believe her?  The evidence pointed against her. The evidence was factual.  The evidence on TV stipulated the truth.  One after another each broadcaster spewed the "facts".  Of course TV is factual…right?

Amanda withdrew.  She stayed within those prison bars looking out into the world.  Often one could see the pain in her eyes.  One could often see the worry on her brow.  But the public world had given up on her.  She deserved her sentence. She must have done something wrong to deserve this. Or could it be that she was lying?  And besides, there are laws governing such things as this. There are professionals that know what to do about this.  They will help her…surely they will.

For four years she endured. For four years, for 1,460 days, 35,040 hours, and 2,102,400 minutes she endured. It certainly felt like 1000 lifetimes to Amanda. She felt every second of her imprisonment. She longed for her freedom. She gathered her wits, patience, and hope and began her fight.

Few at first believed her. I have no doubt she wrote and called to anyone that would listen. She pleaded for help.  She pleaded to find that one professional that could lift her up from her imprisonment and put her back onto the road of freedom…her life she once knew.  She was blessed. She found her savior out there, somewhere.  They rallied the forces, they gathered the proof.  They redid all the tests. And they redid them again. The facts started to emerge. The light began to slowly ebb onto the walls of Amanda's cell.  But should she dare be too confident?  Should she dare hope against hope that she would ever be free?

Hope was mostly what Amanda had. Hope is what helped her get through her ordeal. Hope was the food, the very nourishment that fed Amanda's soul each and every day of her imprisonment.  She believed that one day she would be free.  She knew she was innocent and didn't deserve this. She knew and she hoped and she never, ever gave up on hope.

Amanda is free today! She is back home among those that love and care for her. She is now able to hug her family and friends without the prison bars between them.  But she still has that threat hanging over her head.  The threat that she could possible once again be imprisoned in a foreign country, in a foreign place.  A place she never ever asked to be imprisoned in, a place she never believed would have turned on her, a place she could only hope and pray would one day set her free.

Does this story sound at all familiar to you?  Read it again…

You were living your life.  In the prime of your life.  You were enjoying your life.  You were working, enjoying your friends, and possibly raising a family.  You were at the top of your game and I have no doubt, your mind and soul were souring with the sites, sounds, and tastes of life. You were free. So carefree!

It happened so suddenly.  You weren't prepared for it, you weren't  expecting it and for sure you did not know that it would make you a prisoner.  One innocent day you were taken.  It came for you. From no where you were put behind bars.  Put into a world that was so foreign to you. Put into a world where you barely spoke or understood the language. Thrown into a cold, dark and often very painful and very lonely place that would haunt you for the rest of your life. 

Every day you woke not knowing what to expect.  Would you wake in excruciating pain…be brought in for more torture? Would you ever again be able to run, walk, talk, or even breath like you had done before? Would you ever be able to hug your family without those bars between you? Would you ever be able to return to your previous life? Would you ever be able to be you again, like before all of this?

At first people didn't believe you. They whispered, pointed and murmured your ridicule.  Why should they believe you?  The evidence pointed against you (all tests were negative). The evidence was factual.  The evidence on TV commercials stipulated the truth.  One after another each broadcaster spewed the "facts".  Of course TV is factual…right?

For years you endured. For years, thousands  of days, tens of thousands of hours, and millions of  minutes you endured. It certainly felt like 1000 lifetimes to you. You felt every second of your imprisonment. You longed for your freedom. You gathered your wits, patience, and hope and began your fight.

Few at first believed you. I have no doubt you called and called to anyone that would listen. You pleaded for help.  You pleaded to find that one professional that could lift you up from your imprisonment and put you back onto the road of freedom…your life you once knew.  You were blessed. You found your savior out there, somewhere.  They rallied the forces, they gathered the proof.  They redid all the tests. And they redid them again. The facts started to emerge. The light began to slowly ebb onto the walls of your cell.  But should you dare be too confident?  Should you dare hope against hope that you would ever be free?

Hope is mostly what you have. Hope is what will help you get through your ordeal. Hope is the food, the very nourishment that will feed your  soul each and every day of your imprisonment.  Believe that one day you will be free.  Know that you are innocent and that you don't deserve this…you did nothing wrong.  Know and hope and never, ever give up on hope.

Please believe that one day we will all go free from ra! 

Picture credits:

Amanda 1: Amanda Knox (myspace)

Amanda crying: Getty Images

Amanda behind bars: NY Times

Hocus, Pocus, Refocus!

Day after day after day we live in our ra filled bodies.  From our heads to our toes, from our insides to our outsides, ra prevails. If we get any sleep at all, it wakes us in the morning to a sometimes torturous episode of slow movement to just get out of bed.  We then must take our myriad of medications in the hopes of keeping old ra at bay.  Morning, noon, and night turns to hours, minutes and seconds. Our lives revolve around our disease.  Will ra ever go away we may ask?  Unfortunately as of yet, it will not for the majority of us.  We will be with our ra for the rest of our lives. So how do we refocus our lives? Can we convince ourselves into believing that we can live and even thrive with ra? 

Maybe.  Maybe it is time to hocus, pocus, and refocus away from our ra.  If for days, weeks, months and then years we have been living our life for the purpose of treating our ra, what have we lost in this process? Could it be that maybe, just maybe in our very efforts to find that one solution for our own ra we have robbed ourselves of living in the process.

To not just survive with ra but to thrive with it, I am suggesting that maybe it is time to find things that will take your away from your ra.  And even, in the beginning, if you must fool yourself into a distraction, then do it.  Give it a try and take it one small step at a time.  There are a myriad of distractions out there to help you start this process. Meditation, music, aromatherapy, comedy, walking, swimming, playing an instrument, doing any form of art, cooking, hanging out with friends, and probably one I recommend the most…focusing on your dreams.

For the early years, the ones that have just started this journey, you will probably want to start refocusing your mind with something that will distract you.  What this is will depend on you. For me, when my pain is at its worse, I find comedy to help me the best. Humor for me has always pulled me up and out of my dark hole and helped me to work my way back toward the light.  For the first few years of my ra, it was almost impossible for me to think past that day. Just figuring out how to get up, get us out the door and off to work, get through work and back home, was all I could handle. I used comedy as a mainstay during those first few years. Lucille Ball became my late night buddy. There was a saving grace for me in her stomping around in that huge vat filled with grapes or watching her stuff candies into every crevice of her body to escape being fired. Boy, could I relate to the fear of being fired.

But as time went on, I felt like my entire life was ra driven. I was on this merry-go-round of medications, ra doctors visits, orthopedic visits, physical therapy, pharmacy pickups and that was just for my ra. Throw in one's regular doctors visits and the rest of the world became a blur as I traveled round and round and round. It was time to slow this ride down and take stock of exactly where I was going and more importantly, where did I want to go.

I truly believe that at first we are in a survival mode. Almost like a patient diagnosed with cancer we are fighting for our lives. But, unlike cancer patients, we never get the five year cure…your free.  We stay on the merry-go-round for the rest of our lives. Unless of course, we choose to slow it down, find an object to focus on and eventually get off.  

When I was little, there were merry-go-rounds that encouraged you to grab for the golden ring. Round and round you would go and with each pass, you would reach out as far as you could, line up your hand with the gold ring and grab. For me it always took many paces but eventually I grabbed that golden ring. I still remember my pride, my excitement at having accomplished my task…at reaching for that glistening trinket.

Today, I have taken this memory and put it into practice. At first I wasn't so sure at all that I could accomplish anything anymore. Ra had robbed me of not just my physical capabilities but my confidence in myself as well. I set out to change all this and change it for good!

Taking my golden ring memory and the movie "The Bucket List", I knew I was ready to change.  I didn't want to leave this world (no matter when that time will be) devoid of accomplishing things that meant a lot to me. I was ready to fight back. I was ready to fight for my life and not just my physical well being but my mental and emotional well being as well. I wanted my dreams back. I wanted and want to accomplish these dreams.

For each of us, the dream will be different. For me I have written my bucket list and I am daily working my way to accomplishing one or two of these dreams.  Some of my dreams are short term goals and some of them are long term goals but the main thing is…set one goal. I challenge you, here and now to write one of your lost dreams on a piece of paper and hang it were you can see it every single day. I challenge you to figure out how to accomplish that dream (even one small step at a time) until you have lived it. We already know about adapting with our ra and if you need to…adapt your dream so you can accomplish it.  Just please, don't give up on your dreams!

I am currently working on my dream of going to Paris or Italy (just read my previous post about raising money to go to Italy or Paris). That is my long term goal. My short term goal is to spend more time with those I love. Be it family or friends I want to spend time with them laughing and enjoying the world around me. I do this through Fridates with my daughter, being the "Librarian" for my great niece and nephew which entails reading literature weekly through Skype, calling those that are not near, creating children's picture books for my grand daughter that lives afar, and anything else that I can think of to create everlasting memories.

What are your dreams? What one dream can you lasso and bring close to your heart and claim as yours? Let's make this dream a reality for you!