“Hit by a truck?” my friend David asked. “It’s exactly how it feels.” I went on to tell him that a few weeks ago I was hit with sudden severe pain in my arms and shoulders. At that time I could not turn my head and probably looked goofy when I had to turn my whole body to face him at the restaurant.
I mentioned how bizarre, electrical cattle-prod like shocks would assail me randomly. Just that afternoon, I told him, “I had to leave the office because the pain was so intense from typing a report that tears were streaming from my eyes.”
“It might be Lyme disease,” he said. “With all of the time that you and Katie spend hiking around in the woods, it wouldn’t surprise me.” He advised me to get in to see my doctor as soon as possible.
When I saw my doctor and described the symptoms, she said that it most likely was not Lyme disease. I was tested, just to be sure. By the time I was in her office, I had begun to have trouble with balance, and my left leg was periodically going numb. I had also begun to fall down while walking. That was terrifying.
She did a basic neurological exam and ordered a brain scan. She also expedited a referral to a neurologist. Luckily, I live in Boston, where there is plenty of health care, and the scan was scheduled for the following week.
The Lyme disease test came back negative.
My symptoms continued to worsen. The two weeks I spent waiting for the neurology appointment became dark, long, and depressing.
Finally, the day had come. I barely hobbled in to the neurologist appointment. On the way in, I glanced at my reflection in a window. I looked awful. I was hunched over, using two canes, and looked 30 years older.
As I sat in the waiting room, I looked down and noticed that my hands were swollen and my fingers looked like sausages. I was also acutely aware that my left leg was dead weight, with the left foot unable to bend, and that both of my wrists were on fire from using the canes for support on the way to the appointment.
The neurologist took an extensive history and did a neurological exam. She ordered three additional MRIs and more blood work. Ten days later, I was inside an MRI machine with contrast dye running around my veins. My entire body was in terrible pain. Lying on a cold metal table and holding still did not help. After the last MRI, two attendants helped me off the table and into a wheel chair. To their credit they were very kind and patient as I composed myself.
At the follow-up appointment a few days later, the neurologist figured out that I had skeletal issues. I knew she could see visible signs of my rapid decline. Right then and there she got on the phone and arranged for me to see a doctor in the rheumatology department that same afternoon.
The “rhuemy” did another extensive history, looked at the files from my other two doctors, then promptly ordered 36 x-rays, a couple of gallons of blood, and a urinalysis. A few days later, I went in to his office and I was told I had psoriatic arthritis disease. I had no idea what that was. I had never even heard the term.
With the diagnosis came trepidation about the heavy-duty medications that would be required. There was also a sense of power from knowing that I could once again (perhaps) get in control of my life that had been rapidly spinning out of control over the past two months. I remember thinking that at least whatever was happening to me had a name and could most likely be managed with proper treatment. As the rheumatologist was talking, I began to wonder what this would mean for the rest of my life.
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Merri Pearson is a lifelong advocate and policy wonk. She holds undergraduate and graduate degrees in education, leadership, and policy studies. Most recently she completed her doctoral studies at the George Washington University. An avid traveler, she has been to every continent, including Antarctica. Active all of her life (running, kayaking, rock climbing, and hiking), her favorite professional role was being the executive director of a non-profit providing accessible activities for people with disabilities from 2008-2012. Little did she know she herself would become disabled with psoriatic arthritis in 2017.