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A Battle with Rheumatoid Arthritis


RA awareness

Most of the time, my battle with Rheumatoid Arthritis (RA) is not with the disease but with  doctors, insurance companies, and mail order pharmacies.

Doctors only treat what they can see – either with their eyes, with MRIs or ultrasounds. If I don’t find exactly the right words to persuade my rheumatologist that I’m having difficulty functioning on a daily basis because of pain and fatigue, it may be another three months before I have another opportunity to state my case.

I recognize her doubtful glance.  The lab results are negative for the rheumatoid factor and she sees no visible signs of swelling or redness in my hands. Which, by the way, is the only part of my body she examines.  I wonder about this. RA is a systemic disease, not merely a disease of the hands and feet.                                                                                                                                                                                                                   protein-biomarker

After agreeing with the doctor that there is no visible sign of RA, I reaffirm that I’m in pain and having difficulty sleeping. Each time I roll over in my sleep, I hurt. And it wakes me up.  I remind her that I’m seronegative for RA.  It doesn’t show up in routine blood tests. I’m not certain if it was the look on my face or the words I chose, but she informs me that there is something else we can do. A biomarker test that may uncover any disease activity.  I agree hopefully. I want to prove to her that I’m not making this up. The Vectra DA disease activity test confirms that even with the medication I’ve been taking for almost two years, there is still high disease activity. I’m relieved and concerned about my future health – all in the same breath.

My doctor wants to double my dose of Humira. Again, I agree hopefully. But the next battle begins.

After waiting two weeks for my new prescription – and numerous lengthy calls to the online pharmacy – I am promised a shipment in two days.  It never arrives.  After even more numerous lengthy calls, I discover another barrier.  The insurance company refuses to pay for the new dose of Humira. I have no medication left and I’ve informed everyone of the urgency.

A message is left for my doctor to call the insurance company and place a quantity override on the medication. I receive a recorded message from the pharmacy that states “they’re working on it”.  Too tired and discouraged to make more phone calls, I wait again for medications that are necessary and yet delayed by unknown forces.

These battles leave me with only a small amount of energy to fight the autoimmune disease that is attacking my system from the inside out.

pain chart

And these battles are not unique to me.  Ask anyone you know who has a chronic illness and you will hear the same stories. The name of the doctor, the medication, the online pharmacy, the insurance company are not important. It’s a universal problem.

Medications are delayed because “Patient Care Representatives” don’t follow through. Patients are not kept informed. Had I known about some of the barriers to receiving my medications I would have made the phone call to my doctor much sooner. The system is flawed because it lacks seamless integration. The pharmacy states it is not aware of barriers until it places the medication in the system to ship. Our medications are being shipped by trial and error.

After a break from all the phone calls, I’ll be back full force and taking command of the battles.  Onward!

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4 thoughts on “A Battle with Rheumatoid Arthritis

  1. Pingback: The Battle with Rheumatoid Arthritis Continues | Geeks and Goats

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  4. Pingback: Patient Power | Geeks and Goats

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