Joints and Rollerblades
I loved rollerblading as much as I loved reading. Flying around the skating rink’s smooth, yellow floor. My blonde hair whipped my face as I skated as fast as I could– around and around, but I had to put the rollerblades away and find another activity such as swimming so as to not to aggravate my joints. My joints? You ask why such a young person should be worried about their joints. Well, I will share my story if you have the time. I promise to keep it short; I make no promises on it being sweet though.
I was 12 years old when I was diagnosed with rheumatoid arthritis. Rheumatoid arthritis (RA) is an autoimmune disorder and occurs when your immune system mistakenly attacks your own body’s tissues. I remember my left knee is swollen and hot to the touch. I can’t even put my weight on that leg, so I have a friend help me to the office at school to call someone to pick me up. As soon as my mother sees my angry swollen knee, she rushes me to my primary doctor, where she inserted an extremely long needle into my knee to pull out the fluid collecting on my heated joint. I didn’t cringe at the size of the needle, yet when the syringe begins to extricate the murky fluid, my eyes rolled in the back of my head and I was gone. Out like a light. I wake up to a funny smell as the assistant runs the ammonia smelling stick under my nose.
The doctor tells my mother that I will most likely be in a wheelchair by the time I turn 18. It was scary thinking that I might lose the use of my legs, especially since I was so active. There were also other things that my condition could affect such as my eyes. I have to have them checked every six months because I can go blind. Rheumatoid arthritis attacks at my body from the inside, so that no one can see the immense pain I might feel. It’s a disease that destroys my organs, affecting my heart, joints, lungs, blood vessels, and even my skin. The doctor also told my mother that the immune disorder could cause my appetite to wane causing weight loss. During a flare, the smell of food turns my stomach and it takes an act of Congress to get anything past my tongue.
It can also cause deformity of the joints, especially my fingers, which already hold the tell-tale nodules that are forming on my knuckles. This, of course, worries me as I have always dreamed of being a writer. What happens if I wake up one morning and I have no mobility left? I am sure there is software out there that will allow me to go on, but I love the scratching sound of pencil on paper just as I loved the sound of my clean wheels gliding on the skating rink floor.
There wasn’t a rheumatologist in the small town I live in, so my doctor referred me to a doctor at Egleston Children’s Hospital in Atlanta, Georgia, which is only four hours from where I live. At first, I went monthly. The doctor prescribes medicine and low impact exercises to help keep the mobility of my joints. Then I went into what they call remission and went every six months after that. Basically, my SED rate finally dropped to where it needed to be and the other blood work came back normal, but a flare-up could occur anytime.
I entered high school using a cane to help me get around the huge campus. I was embarrassed as other students would stare at me as if it was all a show. They can’t see my diseased insides, only the outside, where everything appears normal enough. It’s still the same even though I have aged a bit since high school. I get those saying, “Oh, you are too young to be complaining of hurting.” And my most favorite line of all, “You are too young to have arthritis.” Sometimes I want to respond by telling that person to tell my body that; maybe it will listen to them over me.
Living with an invisible disease is tough. I feel like I have to explain myself when I limp, wear my wrist brace, or am just plain wore out. I wake up to stiff joints that refuse to work, like Dorothy’s Tin Man, creaking and rusting, without his oil can. There are days when I can’t open a jar or even pop the tab on my can soda. And there are those days when I am barely able to get out of bed or off the couch because I am so fatigued. I have days where it hurts to take a step, but to most people, they think I am lazy or a hypochondriac. I certainly wish it was something like that, then maybe I could enjoy being in my body.
I want this article to speak to others and let them know they are not alone. There are those of us out here that understand your pain.
And to the ones who take one look at me and think they see a healthy person or someone strung out on drugs, (depending on remission or a flare-up) you haven’t a clue as to what it’s like to live in my body. Don’t judge just because I look mostly normal from the outside, because on the inside my body wages a war on itself, every single minute of every single day.
I still dream of those nights zooming around the rink filled with other kids having fun.