Living with Rheumatoid Arthritis

With the news of music legend Glenn Frey’s passing came a question for many: How could a form of arthritis–specifically Rheumatoid Arthritis (RA) –cause someone’s death? Isn’t it just achy joints and extra misery during cold weather?

RA is an autoimmune disease much closer to the Lupus that shortened the life of Charles Kuralt than the Osteoarthritis that tells your grandma it’s going to rain tomorrow. With RA, the body’s immune system attacks itself, primarily in the synovial fluids in joints. Any joint. Every joint.

I was diagnosed with RA in 2013 while I was recovering from surgery to replace my knees. A veteran knee patient, I had them done the same day. One morning about 7 weeks after the surgery, I awoke in a whole new world.

My hands and wrists were on fire with pain. I couldn’t grip my bed sheet to pull it over me. In comparison with double knee surgeries and childbearing, this was near the top of my “impressive pain” scale.

As the day wore on, I had the ache and misery that we all remember as the feeling you have when coming down with the flu. That first day as a slow-rolling sense of “this is getting worse” comes over you. I describe it as full-body tendonitis.

I tried to sleep, hoping it will resolve. It didn’t. I’m a person who rarely runs a fever, but my thermostat couldn’t figure out what it wanted. I sat up in my bed, sweating, with chills, wrapping myself in towels and blankets, then throwing them off. It was like an Olympic hot flash.

I went to physical therapy as planned. My wonderful therapist suspected RA right away, gave me a very light day’s activity and got me an appointment within a day or two to see a Rheumatologist. These symptoms were a classic presentation for RA, she said. I was diagnosed immediately.

Many RA patients have a very different experience, however. Their symptoms can be more vague, more gradual. Misdiagnosis is common and the delay in starting treatment can come at a great cost.

Treatment for RA suppresses the overactive immune system.  Without it, RA patients will suffer deformities in their joints, most commonly in the hands. You’ve probably seen hands with crooked, swollen fingers. That’s the signature of RA, but not the limit of its wrath.

Left untreated, RA can attack throughout the body, striking with inflammation in the organs, tendons and the vascular system. RA patients are at higher risk for heart disease, pneumonia and lung complications.

Some of the disease modification drugs that treat RA have been around a long time and are still used to treat cancer. The new “biologics” are very effective in driving the disease into remission, but can make patients more vulnerable to infection and some forms of cancer.

We’ve all been bombarded with advertising for these biologic treatments. You see a young father working on his daughter’s doll house, a woman cheerfully running her catering business. The ads emphasize that these people can do these things that are stressful for their hands, thanks to these drugs.

In the RA community, we have a name for the people in these ads. We call them “actors.”

In reality, living with RA is about mitigating chronic pain and restriction of activities. It’s about fatigue. Lots of fatigue.  It’s the frustration of a kind of brain fog that’s hard to describe. I’ll tell you about it when I find my keys.

It’s also about avoiding getting sick with colds and stomach bugs. Less hugging and kissing. More waving and sending emoticons for events we have to skip because there will be a crowd of people. This time of year, it can be very isolating to be an RA patient.

For me, the development of voice-activated word processing and Siri have kept me connected to the world and the work I love – writing. Some days, everything hurts and that totally stinks.

Every now and then (a day or two each month) I enjoy the miracle of a full night’s sleep, a hot shower in the morning and a day where almost nothing hurts at all.

Imagine that!