Several months later, my symptoms had improved, but not as much as I had hoped. My next challenge was to get a TNF inhibitor approved. Again, I found myself caught between wanting to be a well-behaved patient and wanting to take control. After my office visit, I politely waited a week before calling the office. When two weeks had passed and I still did not have approval for my medication, I called my insurance company, then two pharmacies and then the doctor’s office again. Finally, the shipment was arranged. All told, it took about a month before I received the medication. I understood my patients’ frustrations to a much better degree. However, I had something that most patients don’t have: rheumatologist colleagues.
When my first dose was delayed, a colleague offered to give me my first TNF inhibitor injection. Initially I declined, because I felt guilty about going outside the system and taking advantage of this perk—one not available to my patients. The following week, as I continued to hobble through the halls of the hospital and still did not have the package at my doorstep, I shamelessly went to his office for my first injection.
Simple Tasks
During the ACR/ARHP Annual Meeting that I attended that first fall, the Simple Tasks campaign had personal meaning for me. On the morning of the first full day of meetings, I attempted to open a small travel jar containing a liquid with which to tame my curly hair on a humid day. My hands would not cooperate. I used a dry washcloth and then a wet washcloth, again without success. Next, I held the jar under warm running water, but again, I could not open it. I filled a glass with hot water and soaked the jar in it, but even with this maneuver I could not open the jar. At this point, my options were either to bring the jar to the front desk and ask for assistance or to live with frizzy hair for the day. I opted for untamed hair. When I returned to my hotel room that evening, I opened the jar without difficulty. As the meeting progressed, the simple task of walking from place to place in the large venue became more difficult for me.
At the most recent Annual Meeting, I felt a sense of privilege. It’s the rare RA patient who gets to peruse and understand the latest posters with her own interests in mind. During sessions on RA, I thought not only about how this information might benefit my patients, but also about how it might benefit me. How can I lower my risk for cardiovascular disease? How I can I optimize my use of methotrexate? The presenters’ frequent use of “we” (i.e., the rheumatologists) and “they” (i.e., the patients) also caught my attention.
I counsel patients all the time & felt this should somehow make me better equipped. I discovered instead that there is an enormous emotional component when the patient is me.
Lessons Learned
My experience during the past three years has taught me many lessons. I have a greater appreciation for my patients’ experiences, especially those with inflammatory arthritis. Although each patient’s symptoms may differ, I now have first-hand experience with joint pain and morning stiffness. My own experience has helped me better understand my patients’ daily limitations and fears, including the fear of not being able to do what they love. It has made me quicker to realize when someone needs better control of their arthritis in order to function. The amazing resilience and ability to cope some patients exhibit are even more apparent to me now.
