Trina "My Twisted Gift"

PHOTOGRAPHY BY RANDY BACON

When it was suggested to me that I submit my story to 7 Billion Ones, my first thought was, “which one?” I had a pretty good idea it wasn’t the one about my career crisis, broken heart, or family drama but the other one. The one that begins with stiff knees, red swollen fingers, and a pediatrician that said, “don’t we all have a little arthritis?” when my parents made the initial inquiry concerning my development.

My mom and dad knew for some time that something wasn’t quite right with their first born daughter. I woke up at night unable to bend my knees and had a nodule on my left forefinger that made me look more like E.T. than a happy little girl. They might have been new parents but they knew this wasn’t right. They took me to doctors in town, out of town, and finally a doctor in Columbia, Missouri, confirmed their initial speculation. At six-years-old, I was diagnosed with Juvenile Rheumatoid Arthritis (JRA).

For a long time it was an enigma to me. I didn’t quite understand what it meant to have “this”. I knew that old people got it, I knew I couldn't outrun the boys on the playground anymore,  and I came to terms that I had to get a shot from a nurse every week. I was embarrassed to have a disease (an “old people one” at that) so I didn’t tell anybody. The kids at school just thought that I was terrible at sports and had a bad wrist. By the time I was in junior high my right wrist was showing damage and it wasn’t easy to conceal.

I struggled with P.E. in junior high school. The running test nearly ruined my G.P.A. Fortunately, I excelled in a few classes and could stay afloat. The teasing got pretty bad when kids saw my awkward running style. Thankfully I had a supportive family, a few close friends and made it to high school. It was a whole new world from junior high. A better experience where I managed to make the cheerleading squad and play tennis in addition to being involved in numerous clubs and organizations.

It was still difficult to talk about JRA but I knew that knowledge was power. Slowly, I began to understand the different types of arthritis and that not just older people are affected. The autoimmune disease (JRA and RA) that I have is different from the osteoarthritis (OA) that most people are describing when they say arthritis.  Osteoarthritis is when joints wear out from overuse and this does typically happen to older adults. However, rheumatoid arthritis is when a person has an overactive immune system and the body attacks its own joints. It can happen to anyone at any age.

There is not a cure for RA at this time. A regimen of medications can help slow down joint damage, keep swelling and inflammation at bay, and help manage pain. Chronic illness is a life-changing event and can cause worry and sometimes feelings of isolation or depression. Thankfully, there are vast improvements in treatments but there’s still a lot to be resolved. Every individual is affected differently and the degree of damage varies person to person. Most of my visible damage is in my hands and feet. It’s because of custom orthotic insoles that I can walk and run with a reduction in pain and effort.   

Staying active is imperative for human beings, especially those with JRA. While stiff and achy joints make it difficult, my parents made sure I got my exercise.  After my first semester of college I had a painful surgery to fuse my damaged right wrist. It helped with the appearance and usability. Classes made time for exercise a challenge but I got some in from time to time. Once I graduated and had time to commit to running, I did. I started slowly and progressed to a few races, and eventually finished a marathon! With the support from the people around me, I have been able to run eight marathons (two were the infamous Boston Marathon) and make running a tremendous part of my life.

The process of running connects me to my faith, gives me hope, and teaches me that life is a marathon and not a sprint. A few running milestones have blessed me in 2016. After the tragic Joplin tornado in 2011, I decided to participate in the Joplin Memorial Run and have every year. This year, at the Joplin Memorial Half Marathon, I set a PR for the 13.1 mile race with a time of 1:39:44. Earlier this year I was also grateful to have set the Missouri state record for the 25K and broke the 20K time for my age division.  I’m grateful every time I run and plan to do it for the rest of my life, God willing. On my Road I.D. I have Hebrews 12:1 engraved - “Run With Patience The Race Set Before Us.” And I plan to keep running with that etched in my heart.

To be fair, I do wonder what I might look like if my body didn't have the intrusive disease to interrupt normal bone development, if I didn't have to watch the slow damage right before my eyes, or have to feel some of the aches and numbness that is my "normal." I realize that we all have trade-offs in life, no one person has it all. The triumphant part comes where you make the most out of what you have to deal with. Some days I'm better at trying than others but that's when you have those people to make you laugh and the faith to know that all things are possible.

JRA has made my life better because I can be more compassionate to what others might be going through even when obvious signs are not visible.The silver linings are that I might not have ever tried to run or push myself beyond imaginable limits without the disease demanding me to do so every day - even for simple tasks. If I could advise others going through something similar, I would suggest to surround yourself with understanding people. Not people who feel sorry for or pity you, but who understand and root for you; and also be that same person to yourself. Root for yourself and give yourself compassion and grace, not pity. Find a way over, around, or through this obstacle. Have faith, laugh a lot, and a good dog helps too. ;-)

Thank you:

While much credit goes to the great doctors, nurses, and my encouraging family (my mother was diagnosed with Type 1 Diabetes as an adult in her 30s - so she was dealing with motherhood, my JRA, and trying to  figure out what was going on with her own body), there's no doubt that my life would not have the quality that it does without my super husband. He possesses compassion and support that I am beyond blessed to be on the receiving end of. In 2014 he was diagnosed with a rare neurological disease and is still determined to live a fulfilling  life and make the most of every moment. When I get upset about the medical setbacks that the people I love have, and that I have, I stop and think that we are probably placed in each other's lives so we can see what it's like to watch someone get back up, again and again, and to offer a helping hand when the going gets tough. My partner in life is also my teammate, cheerleader, and a valuable asset to my twisted gift.

For more information about JRA and support consider:

Arthritis Introspective: arthritisintrospective.org

Arthritis Foundation: arthritis.org