Those Rebellious Hands

My hands refuse to cooperate.  I don’t ask remarkable things of them.  No classical piano playing, no awe-inspiring sleight of hand magic tricks, and not even those art classes I’ve been thinking about.

So what ridiculous demands am I making of my hands?  Turning doorknobs to enter a room.  Shaking hands with people. Typing, clicking my mouse, and even picking up my MacBook Air.  Love my MacBook, but it’s a little heavier than air.  Especially to those of us with Rheumatoid Arthritis.

Occasionally, someone will ask me to hold something for them.  I scrutinize the object, quickly estimating its weight.  The last thing I want to say is that it’s too heavy.  Why? Because the response is usually “Oh, it’s not heavy at all.”   Why is it so difficult for me to explain that my hands hurt and they don’t always respond the way I want them to? So, I grasp the object in question, hold it with my hands and secure it with forearms, my chest, or anything else that will prevent me from dropping it.

Learning to make accomodations for all my affected joints – hands, feet, knees, hips, and whatever hurts that day – is a continuing challenge. But my hands frequently give me more trouble than my other joints. At times, my hands are so uncooperative, I think they may belong to someone else.

Maybe…..

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Thing from the Addams Family seemed to enter the scene right on time. So, no… that can’t be the hand(s) I have.

Or… The Hands of Orlac.

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Yes, more likely. Those hands had a homicidal life of their own.  

That movie did not end well.  Here’s hoping I maintain better control of my hands.

 

 

 

 

 

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Why Did I Come in Here and What Am I Doing?

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I’ve had to refocus my wandering attention lately by asking myself those two questions.  Almost anyone can relate to this difficulty caused by many, many distractions and demands on our time.  Those of us with chronic illness can relate on a different level.

With so many tasks left unfinished, my mind moves at a dangerously fast pace. And I can’t keep up with it.  In midstride I forget where I’m headed and what I wanted to accomplish. Faulty memory sometimes accompanies the aging process, but it bursts to the surface with a flare of my Rheumatoid Arthritis (RA). And I’m not that old. Really, I’m not.

The wanderings of my imagination take me to thoughts I don’t yet need to think.  The tyranny of the “what if”. What if I have a flare up of symptoms on a very demanding day at work? What if the next round of medical tests show that my RA is advancing? What if an additional medical problem is discovered?  It turns out that my intuition must also be in high gear because many of the things I’ve been worrying about have recently appeared.

Wondering if I will have enough energy and focus to move through the next series of events.  Enough wondering.  Time for action.  Recently, I tried some audio files that were titled as relaxation sounds and found them stressful.  It’s snowing and very cold outside.  The babbling brook and spring bird calls created a dissonance with my current environment.

In the past, yoga and meditation has been a successful way to bring back my focus and proactive attitude. Pardon me while I lay out my yoga mat.

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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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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.

Patient Power

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Another unbelievable round of phone calls to have a medication authorized (or re-authorized in this case).  The authorization for my Orencia infusions expired and of course, no one notified me of that small detail.  The evening before my 8 AM infusion time, I received a phone call from my rheumatologist’s office stating that since I no longer had current approval from the insurance company, they had cancelled my appointment.

I asked the nurse if there was anything I could do to speed up the process so I wouldn’t be without the Orencia for too long.  I was remembering my last battle – authorization for an increase in my Humira injection.  This battle raged for 7 weeks, leaving me without anything but methotrexate to fight a disease that was currently winning.

In response to my “What can I do to help speed up this process?”, the nurse responded in a very patronizing tone “Oh, I wouldn’t know what YOU could do!”  I was left speechless, unfortunately.  I didn’t expect to be treated like a helpless child.

So, as soon as Blue Cross business hours arrived the next morning, I made a few phone calls.  I learned the authorization was already in place when the doctor’s office cancelled the appointment. Unfortunately, the doctor’s office didn’t make the necessary phone calls to determine this information. They simply assumed that if no one called them, there was nothing happening.

Because my doctor’s office has such a huge voicemail system and patients aren’t given extensions to call, I decided not to deal with the complicated process of leaving a message for my doctor.  I simply called the infusion clinic (who was already aware of the problem), gave them the updated info and rescheduled my infusion to the next day.

But my doctor’s office seemed upset by this process, calling me back at 5 PM and warning me that they had no authorization information and if I kept my appointment I would be responsible for the payment.  Another night of trying to sleep while worrying about my successful treatments being stopped or delayed.  I called Blue Cross again and the very helpful Outreach Nurse confirmed that things were in place for insurance coverage, but the doctor was not responding to phone calls. They again notified the rheumatologist’s office of the information.  And I went to my infusion, knowing that I had the power to make things work.

I’m the patient. This is my rheumatoid arthritis.  And since it’s my body that is being attacked, I am the most passionate to fight for what I need.

And that, my dear doctor’s nurse, is what I can do.

How Danny Thomas Changed My Perspective

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I read the greatest quote today. A piece of advice Danny Thomas provided his daughter Marlo when she was at the beginning of her career.

“I raised you to be a thoroughbred, and when thoroughbreds run, they wear blinders to keep their eyes focused straight ahead with no distractions from the other horses. They run their own race. That’s what you have to do. Don’t listen to anyone comparing you to me or anyone else. You just run your own race.”

Throughout my life, I’ve compared my success – or lack of success – with my peers, with those I admire and have never met, and with my small group of friends.  I’m not jealous, nor overly competitive, merely constantly fighting feelings of inadequecy. Why have I not done more with my talents and interests?  Why am I so self conscious about my perceived lack of lifetime accomplishments?

I have many good years left, I hope, to do something important. But what is that “something” I’ve been chasing all these years? I still can’t seem to identify it.  Of course I can’t actualize what I can’t identify.  This has been a source of frustration for me most of my life.

From this moment on, I will do my very best to not compare myself with other women, others with rheumatoid arthritis, baby boomers, social activists, or accomplished writers.  I will still admire and praise their accomplishments. And my thoughts will no longer jump ahead to guilt for my perceived lack of success. My next thought could be “how can I help this cause” or “is this the something I’ve been searching for?”

And I will think of Danny Thomas and be grateful that Marlo had such a wise and loving father. And I will run my own race.

Rheumatoid Arthritis, Orencia, and Hope

Beginning my 4th month on Orencia infusions and I remain hopeful. Feeling more energetic and able to move more easily and with less pain.  It feels like a heavy fog has been lifted from my physical being.

Oh, I’ve had a few unhappy experiences with IV sticks, but won’t give them any blog space because I’m feeling better and more able to manage my symptoms. Along with feeling better, I’m also cautious about saying those words out loud –  feeling better – almost as if I’m afraid that will change something and the Orencia will stop working.  Ridiculous, right? Or maybe I’m hesitant to say those words because someone who doesn’t understand RA will think feeling better means no pain, no exhaustion, and no disease activity.

Anyone who has rheumatoid arthritis might understand this caution. Aware every day that RA is a progressive, systemic autoimmune disease, it’s difficult to be too optimistic.  But hopeful? That I can do!