A Day in a Life- Living with Rheumatoid Arthritis
I was a healthy baby until at 10 months suddenly one morning my mom noticed that one ankle was swollen and painful to me. Soon my elbow became painful and I cried a lot and stopped crawling and moving. My parents took me to more than one doctor and after ruling out child abuse and many tests, at 11 months they diagnosed me with JRA.
Starting at age one; I was a patient of Shriners Hospital for Children, where I went to several times a week for therapy and checkups. Dr. Borzy, was my rheumatologist for 20 years and genuinely cared about me and my condition; he always treated me with the utmost respect. I became used to the usual blood draws, to the point where I actually enjoyed watching the entire procedure; not to mention earning a free ice cream from the cafeteria afterwards. After I turned 21, I had officially graduated from Shriners, and sadly said my goodbyes to the people there that I had grown up knowing as a part of my life. I was then referred to a rheumatologist for adults in Portland.
But my RA did not only just affect my joints, but also my eyes. At age one, I also began going to Casey Eye Institute at OHSU for Uveitis, which is inflammation of the fluid in the eyes; another indication of RA. Valves were implanted in both eyes when I was very young to relieve the dangerous buildup of pressure. Once there was a minor problem with one tube and they had to do an emergency operation while I was awake! I was only a kid, but I was brave. They treat this condition with eye drops, though these drops controlled the inflammation, the side effect had caused Glaucoma in both eyes, as well as creating cataracts in both eyes. Since then, I’ve had these cataracts removed. I have been a patient at Casey Eye my entire life, and still am. The doctors there have taken wonderful care of me and have been outstanding in their knowledge; they have never given me a chance to doubt their skills.
Though all these doctor appointments became a way of life for me and helped keep the diseases under control, there was one thing that they could never control…my pain. The constant chronic pain has been with me every second of every day of every year. I think out of all of it, the worst part was/is knowing that no one would ever understand the amount of pain I bear on a daily basis. From the outside, after starting Enbrel injections at age 10, and hydrocodone at age 22, they have helped me look more “normal” but it also has made it harder for people to tell I am in pain. So when someone asks me, “why don’t you do that? Why can’t you do this?” How to answer them has always been the toughest. If I tell them the truth, 9 out of 10 times they don’t believe me and laugh it off as if I am making a joke. So I try to keep my emotions on the inside, knowing it’s better to just let them think I am lazy than to be called a liar and over exaggerating.
Once I had started my first job, the pain became even more miserable as I was not used to the hours of running around 5 days a week. Coming home limping as if I had ran 1,000 miles in 8 hours slowly became normal for me but I never let it control me and what I wanted to do with my life; it only made me stronger. My RA had enough years of crippling my life, now it was my turn to show it who was boss.
But despite all my pain, the friends that have come and gone, the loneliness, the sleepless nights in bed crying…there is one who has always understood my pain, heard my silent cries, never judged me for who I am, and loves me unconditionally; that is my Lord and Savior, Jesus Christ. He knew me and formed me before I was born. He knew exactly who I would grow up to be, and tells me I am His. No matter what life has thrown at me, He has been there to guide and strengthen me. I could never dream of living my life without Him as my first, true best friend.
This short movie/slideshow I posted below I made in hopes to encourage others who have JRA, RA, or any other invisible chronic illness to not give up, to keep moving, and to know that anything is possible, anything. We fight an invisible chronic autoimmune disease that is so often misinterpreted and misunderstood. We fight pain that most can't even begin to comprehend, as well as loneliness, anger, and depression. We are not weak, but stronger than many. Pursue your dreams and your goals no matter how small or how big others might think they are. Those dreams/goals are yours, and you have earned it!
“The greatest risk we’ll ever take by far is to stand in the light and be seen as we are.” ~ Jordan Smith
Right now, what RA tips would most be helpful for you?