I’ve just passed my six year anniversary of the first time I felt symptoms of Rheumatoid Arthritis. Honestly I spend most of my time doing my best to not dwell on this stuff, but I feel like I need to look into the past and share it.
Everyone’s journey is important, even if it is sucktastic sometimes, and maybe hearing mine will help others with theirs.
The Beginning
When I was seventeen, my family moved from Virginia to Mississippi. What I left behind was a whole lot of stress and discouragement, and the move itself was a huge release. In retrospect I’ve often wondered if the tension I left was part of what made the symptoms start when they did.
A few days after the move, my right thumb started to swell and hurt. I’d wake myself up in the middle of the night because of the pain. We waited about a month, thinking it was just a freak occurrence, before we went to my primary care doctor. She ran a ton of bloodwork and, though she didn’t give me a firm diagnosis, I was referred to a pediatric rheumatologist.
I had a variety of other health symptoms going on, too, and there was a lot of concern among my doctors that they really didn’t know what the hell my immune system was doing. At this time I started seeing just about every pediatric specialist in the area. I counted them up at one point, and I saw about 14 different specialists that year.
Meanwhile, the nearest pediatric rheumatologist was in New Orleans, about two hours away. Both times I saw him, he spent a max of 15 minutes with me. Plus he misdiagnosed me. Twice.
After turning 18, I was finally allowed to see a local rheumatologist (who was amazing and once explained RA to me by comparing it to Neuschwanstein Castle). He diagnosed me with Rheumatoid Arthritis and, after monitoring me for a little while, started me on methotrexate and HUMIRA.
I left for college right after starting my hard treatments. Aside from retrospectively minor worries (due to complications I ended up on my nemesis Prednisone for extended periods over about three years), stuff went okay for about two years.
My Fingers Protest Against Normalcy
In 2011, in the summer between sophomore and junior year, I went on a pretty intense trip to Central Asia. When I got back to school (where I worked every summer), I went out with a friend to tell her about the trip. I was gesturing with my hands and suddenly my left pointer finger bent and froze. I couldn’t straighten it. But after a few minutes, it snapped back almost by itself. Another freak accident, right?
The next morning I curled my fingers around my backpack straps while walking to work. When I arrived, I couldn’t straighten my finger. I saw my rheumatologist that afternoon and he couldn’t figure out what was going on. Eventually he sent me home and told me to call if it got worse.
Within 24 hours, the pain was so intense that if I knocked my finger against something I had to press my face against my desk to keep from crying. I got juggled from my rheumatologist to a hand surgeon. He took x-rays and showed me how my joint had completely come apart. He straightened the finger (not as painless as it sounds), put me in a brace, and we arranged for a surgery. Then I went to the car and cried for a very very long time.
Soon I was having surgery to fuse that finger. My parents flew in to help me with the recovery. My hand surgeon also did a thorough check for damage on my other fingers and found that my right middle finger and left pinky were in danger. I had two more surgeries in the next three months (though these were just to clean out the fluid and reduce damage, not to fuse the bones). I remember the nurses joking with me, “You here again? Didn’t I see you last month?”
By the time of the third surgery, everything was pretty black to me. I was 21 and my body was literally starting to fall apart. I told my mom that I thought I needed a counselor. When I made my first appointment, I remember my counselor asked something like, “What prompted you to reach out?” I briefly explained the surgeries, etc., and trailed off before I said, “It’s just so dark.”
That time with my counselor was one of the most challenging, healing experiences I’ve ever had. I’ve since learned that a lot of people believe in order to have a healthy lifestyle with RA it’s important to regularly see a counselor. Something I probably should be better about now, honestly.
The Study Abroad Almost-Crisis
I was all set to study abroad in Spring 2012. About a week before, as I was reading a book on a Sunday afternoon, my right middle finger bent and froze. Just like the left pointer had.
A note about this: Part of what was so terrifying and scarring about these collapses was that you never knew when it’d happen. Even today I feel like I’m just waiting for something else to break.
Luckily I was able to get in to see a hand surgeon (I was with my parents in Virginia, so away from all my regular doctors). He put in an order and got me a silver ring brace, which looks like real jewelry and has kept my finger intact for the past two years. With this, I was able to study abroad, and I had a fantastic time. It was a period for a lot of wrestling with God and a lot of healing.
Since Then
Aside from minor problems here and there, my RA has been pretty okay since then. There are bad days. There are days when I can feel the disease in new fingers, and I know it’s going to start all over again. But there are good days, too—days when I walk up steep hills and don’t even have to stop and rest my ankles. Days when I write by hand. Days when I break out my flute and play for a while.
Even having my story divided into sections with nice bold titles is a symptom of me trying to create order out of chaos. The thing about chronic illness is that it doesn’t fit. It doesn’t move in smooth arcs with nice resolutions. It just melts on and on through hours and days and years until it’s this mess that doesn’t make any sense, never will make any sense.
A recent TV show I watch had a character with an arm injury. Some of the physical therapy they showed him struggling through was the same I remember post-surgeries. Suddenly a hole in me opened and I was a shaking, sobbing mess out of nowhere. I found myself frustrated. I thought I’d moved on.
What I am learning—what I imagine I will be learning for the rest of my life—is that RA isn’t something that progresses or regresses in a reasonable way. My whole life will be me learning how to die. Which isn’t so different from regular people’s lives, because we’re all dying. (I know, cheerful stuff.) The difference is I don’t get to put it off for another forty years before I start to feel it.
But that’s okay. I’m a soul, not a body.
I wanted to end this with some sort of rallying, witty, funny one-liner that would make people walk away saying, “Wow, I really want that on my wall or perhaps tattooed to my arm.” But I don’t have anything particular upbeat to say and I’m okay with that. Honestly Rheumatoid Arthritis sucks and that’s the way it is .
Six years down, one step at a time. I’m going to keep walking.
Resources:
RA Guy’s 60 Second Guide | Creaky Joints | American College of Rheumatology | Moms with RA
