Wednesday, October 5, 2011

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!


Deb aka AbcsOfra said...

"Hi Deb,

This post speaks volumes! Choosing to Thrive With RA the moment I got RA (before I knew what it was that I had), and especially after diagnosis, my dreams have been things -- tangible things to strengthen me and make life more pleasure than pain -- that I have held onto.

I have been blessed with a stream of new ideas and dreams to incorporate into my life since RA, as well as ideas on how to adapt the ones I've had before RA if needed. I have also learned to make other dreams I've been postponing a higher priority.

Most of my dreams involve some form of creativity or volunteer service to others, which is and always has been my way to connect with the world around me, and with other people. This has been an important source of strength to persevere and to retain a wellspring of happiness, as without happiness and the ability to find it even when dealing with a life-threatening illness, life on earth becomes a series of shadowed vignettes of mere existence, and not a fulfilled, THRIVING LIFE.

I have chosen to THRIVE WITH RA. I have chosen to pursue and live my dreams, each and every day. I go to bed at night, seeking to dream of a better tomorrow. I wake up the next day seeking to realize my dreams. Small ones, big ones, short-term ones or long-term ones, for me, a life without dreams isn't a life worth living.

Thanks again for a thought-provoking post. :)"

Deb aka AbcsOfra said...

Sorry if any of you are having problems posting today. Thrive with RA apparently had problems and asked me to post the above comment. Hope you aren't experiencing the same.

Rhonda said...


Thank you so much for this heartfelt post. I have been "sick" for a year now and only diagnosed 2.5 months ago. The diagnosis of RA took the world from beneath my feet. I felt my diagnosis a life sentence and my hope of get me diagnosed and with treatment I would get my life back...that flew right out the window! Today's post touched my heart and reminded me that we are not truly living if we let our dreams die. I might have to change the how and adjust them a little to be realistic within my new reality but I can still achieve anything I put my mind to. ((HUGS)) and a great big thank you from the bottom of my heart.

Anonymous said...

What a wonderful post! I have been trying to move beyond "Surviving" and toward "thriving". I think I'm getting there. =)

Jan said...

Thanks, Deb. You help us so much with your honest posts. My dream is one I hope I can stay with--"All shall be well."

Deb aka AbcsOfra said...

Thrive with RA...thank you for your the well spoken post. I can feel the flight of your dreams in your words! heart is reaching out to you! I remember those times all too well and I do remember them being my most challenging in my journey. Please just know that if you EVER need an ear to bend or a shoulder to rest on, I will be there for you. You got the very reason I wrote this post. I am hoping that not one person with ra EVER gives up on their dreams. And yes, I really do know how difficult it can be to pursue dreams without ra let alone with ra. But the filling up of our souls, our minds and the lifting of our spirits is something that only pursuing a dream can truly do. Again, if you EVER need a comrade in your hand is outstretched.

Joan...And you are doing a good job at it too! Your blog shows just how much you are moving beyond and toward thriving!

Jan...Thank you! How kind of you to say. And I truly hope your dream takes soars..."All shall be well."

Anonymous said...

LOVE this, thank you.
Italy, hands down and in a heartbeat, Italy. Been to both and Italy is by far the most beautiful and friendly.
My dream... to make my writing alive and something that people will love... and I'm getting there... one day at a time, one poem at a time, I'm getting there.
Not just at any more!!!
Thank you!

Deb aka AbcsOfra said...

Calndestinewriting...thanks for the info. on Italy :-) I was suspecting that anyway. Plus my daughter eats glueten free and they are suppose to be the best at that also and sooo very friendly in the restaurants. Blogging was a "dream" of mine also :-)

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