Ringing the Bell for Rheumatoid Arthritis Champions

My monthly Orencia infusions for my Rheumatoid Arthritis (RA) bring me to the cancer center of a local hospital on a regular basis.  The environment is warm and friendly, with a mix of all ages and varying states of illnesses.  The nursing staff is welcoming and good at what they do. Sometimes the IV goes well, sometimes it is the worst moment of my month.  But that is to be expected. bell

What I did not expect was to feel uncomfortably conflicted when something wonderful happened.  As you may know, it’s the custom in a cancer center for someone who has just finished their cancer treatment to ring a bell.  The ringing of the bell celebrates a victory – and is a celebration of life itself.  Someone celebrated that victory while I was receiving my Orencia infusion this month.  I was happy for her. She said it was a struggle, but now she was done with the treatments and could direct her energy elsewhere.

That’s when this thought hit me as if I had walked into a wall.  I would never be finished with my treatment. Or able to direct my energy elsewhere. There is no end to treatment for RA, therefore no opportunity to ring the bell.  There is only transition from one horrid biologic medication to the next – stronger and with more damaging side effects.  All with the intent of keeping joint and organ damage to a minimum.  The side effects are concerning, but not a certainty.  The damage that untreated RA can cause is a reality.  That’s why we continue pumping all those chemicals into our bodies.  Infusions for RA are also chemotherapy. Yet I’m ashamed that I went from celebrating with this lovely woman to wondering where the celebration is for RA patients. Cancer is a horrible disease.  And so is RA.  I think of this woman often since then and am sincerely happy that she fought through the chemotherapy and radiation. And those of us with RA also need to fight through our treatments – and also to celebrate.  Where’s the bell for us to ring? bell

I will keep the sound of that bell within me as a celebration of life.  A celebration of my ongoing daily victory over RA. A celebration of all our battles with RA, no matter how small the victories. Some days a victory will simply mean getting out of bed.  Other days a victory will mean opening the peanut butter jar (with the help of a device that does the gripping for us, of course). Or hiking on vacation. We all do what we can, when we can.

We are all RA champions. We deserve to celebrate our victories, too.

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Don’t Call Me Princess

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A trip to Disney World was not on my list of places to go.  Because my husband is interested in animation and technology, I fully agreed to a vacation that included four days in the magical world of Disney. And I did have fun. A lot of that had to do with animation and technology, which are interests I share with my husband.

We stayed at a beautiful resort on Disney property, so the transportation back and forth to the parks was simplified.  Buses to all of the parks were plentiful.

My first moment of “was I out of my mind when I agreed to this?” came when we first entered the park.  As I entered the Magic Kingdom for the first time since 1980, I was greeted with “Have a magical day, princess”.  Really??? Take a good look, I’m more the family matriarch, queen mother type of person.  Princess? Ugh.

And then I noticed them.

The dozens of little girls in their princess dresses, ready to to have their princess make-overs, their princess lunches with other princesses, and being called princess by all the Disney employees (known as cast members).  That should prepare them for the future, right?

Never mind the math and science. Let’s work on their princess skills.

 

 

 

I Look at You and I Wonder

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Your smile does not match the horrible experiences you are conveying to me with your words.  It serves to distance you from these horrors, I know. And I wonder – are you aware of your smile?

I wonder what fortunate events have counterbalanced my own horrors so that I have evaded the dissonance I see in you. Or am I simply not aware of my own incongruities?

There is a strangeness flowing out of you as you speak. Your thoughts wander and then return to the topic at hand, running full circle.

I wonder how firm your grasp on reality remains. Or is your reality so unthinkable that you have released yourself from it?

Traveling with Rheumatoid Arthritis

Before rheumatoid arthritis became my constant companion, I wasn’t concerned with limitations. Never considered that I had any at all.  Until one day I did.

Traveling with R.A. becomes more challenging each time.  And there is no certainty to how I feel, what I can (or can’t) include in my itinerary, or how much energy I require to push through the discomfort and pain. And functioning with chronic pain demands a constant supply of energy.

When I arrived in Costa Rica, I was exhausted. Early in the day is the best time for me to fly, so I took the 7 AM flight. Still, the travel time required for such a simple flight took a toll.  Upon my arrival in San Jose, I longed for someone to say “You’ve done well, You can return home right now.”  But I pressed on.

My first two days of vacation were spent in a state of exhaustion.  I visited museums, walked around the city, and had a delicious meal.  The food is so fresh! (A story for another time.)  I’m not sure I ever recovered from the initial exhaustion. I think I became numb.

And then – the numbness left. The pain and stiffness began.  The feeling of exhaustion remained.  But Costa Rica is such a beautiful country, I pressed on.  I walked, I rode buses, I took taxis, I walked again.  Walls became a means of physical support for me, especially where stairs appeared.

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I pressed on.  This was a journey I waited three years to begin and I wasn’t planning on stopping.  As long as I could move, my adventure would continue.  And what an adventure it was!  I walked further than I ever could imagine I would. Not certain how, but quite a few days my pedometer measured 6 or 7 miles per day.

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I hiked up to a volcano, toured a coffee plantation, walked through well manicured trails to waterfalls, and walked through museums and organic markets.

It was worth the struggle. The memories and the photos tell the story of my trip.  The pain and the struggle are now distant.