This week is significant for me. Today is World Arthritis Day, a day where we can unite globally to raise awareness and funds to battle various forms of arthritis, like Rheumatoid Arthritis.
RA is complicated disease. It’s hard, but not impossible, to see. It can control some days and weeks, and barely impact others. It is a rollercoaster, but it reminds me of how strong my body is, how strong my will is, and how strong my mind is.
This week is also my birthday. I turn 31 on the 15th, marking 15 years with RA. This is the last year that I can say that more of my life has been lived without RA that has been lived with it. This realization a few weeks ago has caused my diagnosis journey to surface in my mind more and more frequently and I want to share it with you today.
When I was young, under 10 years old, I remember having “growing pains” in my knees and feet. One evening I was on my grandparent’s deck, frozen in place, with pain in my knees that stopped me from taking the steep staircase to their backyard and across the lawn to my own home. The next moment I remember is being carried in my grandfather’s arms to my house. I thought that this type of “growing pain” was normal so I kept it to myself. These memories of “growing pains” were buried so deeply in my mind that I didn’t recall them until this week.
Occasional pain and achiness went ignored. It was attributed it to the way I sat and walked, the way I played, the way I practiced sports. I was young, it couldn’t be anything more. I told myself that it wasn’t that bad, it didn’t last that long, and it happened infrequently.
Finally, one brisk morning, it didn’t seem normal. I was 14 years old and had just finished an early morning track practice, but once again, I was frozen. My knees throbbed and I couldn’t, just couldn’t, bend my knees and lift my feet up. I looked over to the parking lot to see my parents’ car. Eager to get home to rest, I mustered up the courage and shuffled off to the car. I was worried that something was seriously wrong, but the solution that was presented was that I was running “flat footed” and that if I fixed my technique, I would fix the pain.
During my sophomore year of high school, I started experiencing a noticeable change in my body. I would step out of my bed in the morning, put my feet on the ground and feel like I was walking on gravel. It would last for about a half an hour and then pass. I mentioned this lightly to my parents and we thought that it may have been my less than practical shoes. We tossed many of them away, which was a sad day for a 16-year-old me.
During the spring of that same year, I went to a concert with my best friend. We were on our feet on concrete for hours. We woke up the next morning in our hotel room where getting out of bed was extra difficult. I turned to her and asked if she was experiencing any pain in her feet, and she agreed. I then went on to tell her that this happens every morning, and she looked at me quietly for a few seconds before saying, “I think you need to see a doctor.” It was at that moment that I realized something could be wrong.
I told my mother about the pain in my feet and that it had been occurring every day for months. She decided to take me to our family doctor who did a variety of tests. He told us that it could be Lyme disease, Rheumatoid Arthritis, or something else entirely. He ran a few more tests and we ventured out on our annual family vacation to the beach. We spent a week in the sun and all seemed fine, I wasn’t concerned at all about my health and enjoyed time with my family and friends.
On the last day, I walked away with a nasty sunburn. This was very unusual for me, and I was certainly annoyed that I would spend the next week applying aloe and peeling. By the following morning the sunburn had turned into a rash all over my body. I feared that I had Lupus (a disease that I was familiar with because of my father). I spent the six hour drive asleep in the back of the car. I was sick to my stomach, sore, and angry. This anger wouldn’t fade for several months.
The following day, my parents informed me that the doctor had called while we were at the beach and he believed that I did, in fact, have Rheumatoid Arthritis, but that I would need to see a specialist to confirm the diagnosis and start treatment.
The pain was mostly limited to my feet now that track season was over. I didn’t think it would get any worse. However, this beach trip seemed to mark the beginning of a downward spiral. I’m not sure if this was because of the answer to a question that I asked myself for several months, or just the natural progression of the disease, but I started feeling immense pain in my shoulders, in my hands, and in almost all of my joints. Drying my hair was difficult, getting up and down off the floor was nearly impossible, and keeping my energy for an entire day wasn’t an option.
I was intolerable to be around, I’m certain. I was in pain, I was exhausted, I was frustrated. It took all of that summer and the beginning of fall for me to finally find a specialist that would treat me because I was a minor. I went without concrete answers and without treatment for several months.
My mother worked diligently to convince someone within a few hours drive to take a 16-year-old patient. She finally had luck in Charleston, WV, just under a two hour drive from my house. I saw the doctor, had a great experience with him and his staff and started treatment right away. There was a wave of relief to find out what my disease really was and that he had a plan.
Everyone’s diagnosis story is different, but they all show us one key principle, we are not alone.
Since my diagnosis, I’ve had triumphant moments, and moments of pain. I’ve found doctors who listen and those who ignore me. I’ve changed my diet, and changed it back, and changed it back again. I rest when I need to, challenge my body when I want to, and follow my inner compass.
Like I mentioned earlier, this disease is like a rollercoaster. Instead of fearing the next drop or anticipating a corkscrew, I lean into it.