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.

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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!