Through 29 years of living with rheumatoid arthritis, I have experienced both painful flares and periods of remission. I have tried many different medications and treatment regimens. I spent years in physical and occupational therapy and had many, many splints and other funky contraptions to straighten contractures and reshape slowly deforming bones. I have had several relatively successful surgeries, though maybe not with my ideal outcomes. Detailing my whole history of arthritis would take pages and pages, so I’ll try to give a few illustrative stories and then move on to the present.

I generally had an odd case of JRA to begin with. When I was very young and the disease was most active, I did have the hallmark morning stiffness. There was a period of time in early elementary school when I couldn’t walk in the morning. I would commando crawl to the bathroom and pull myself up to the sink to brush my teeth. My parents woke me up extra early every day, so I would have time for a long soak in the tub to get my legs moving. However, it did not begin in the wrists and hands like adult RA usually does. It began in one toe, then moved to the knee on the same leg, and after a few years, jumped to one finger on the same side, until finally affecting both elbows several years later in elementary school. I also didn’t have the fever and chills or skin rash now commonly associated with JRA. Also, I’ve never had an elevated sed rate or a positive rheumatoid factor.

And after the first few years, I didn’t have the hallmark swelling and stiffness. The arthritis would affect my joints and I didn’t have pain until after the damage had already been done. For example, I started having pain in my jaw my senior year of high school. That was also the time that I decided to get braces on my teeth for the second time, because I was embarrassed about how my teeth had shifted after the first short session of braces. When I saw the orthodontist however, he saw what my family hadn’t noticed looking at me every day, that my face had grown a little asymmetrically; the right side being properly developed with a longer jaw line than the left side which had an underdeveloped joint and shorter jaw bone. No wonder I was having pain on the right side of my jaw. In order to close the underdeveloped left side of my mouth, I had to grind down hard on the right. Looking back through my school pictures, we realized that starting around the 9th grade, my face did look a little more changed each year, but it was never enough that we noticed it.

At the time, the maxillofacial surgeon advised against surgically correcting my jaw. I was in pain, but wasn’t unable to eat solid food. The dangers of the surgery at the time (which involved breaking both parts of my jaw and inserting rib bone then wiring my jaw shut for six weeks) greatly outweighed the pain I was in. Today, I am a candidate for TM joint replacement surgery, with custom-made titanium TM joints, but that story and the related insurance issues will be left for another blog.