I Am a Canvas.

July 21, 2011
"If you were to rush into this room right now and announce that you had struck a deal...in which the ten years since my diagnosis could be magically taken away, traded in for ten more years as the person I was before - I would, without a moment's hesitation, tell you to take a hike." –Michael J. Fox

When I was fourteen, I was concerned with remembering to brush my hair in the morning, boy troubles, acne on my forehead, and my cruelly-fair complexion. Life was simple, I spent my days being cheerful and enjoying the simplicity. I spent a lot of my time researching beauty tips, makeup, lip glosses, lotions, and cures for petty imperfections. My childish vanity quickly alerted me to something odd: small dots on my cuticles. I noticed them during a long marching band practice when I was merely a freshman, so I ignored the dots and concentrated on the pulse of the music and the movement of my body. I had higher priorities than a minor defect.

Due to the consistent stretching warm-ups and demanding nature of marching band, I, once again, noticed the bumps as my body struggled to loosen. I was unbearably stiff. My knees would lock as I moved about the field. To combat my shock, I questioned my mother the following weekend while venturing through Wal-Mart.

“Mom, It hurts whenever I bend my legs.” “Jamie, if it hurts, don’t do it.”

Dramatically, I sighed and brushed off my dilemma.

The pain was slight, and my flexibility diminished gradually. When sophomore year began, the rash had spread to every knuckle on both of my hands. It was bumpy, knobby, and once again took a toll on my imagined idea of beauty. It was a struggle to tie my shoes, and I forgot what the bottoms of my feet looked like. My elbows also wanted to receive the coveted rash, to my dismay.

My mother was shocked. I was sent to a dermatologist close to home. Dr. Gross(yes, really) examined me and I was sent to the General Hospital for bloodwork. Unknown to me, before the bloodwork, Dr. Gross told my parents that I surely had lupus.

Lupus is an autoimmune disease described by the Lupus Foundation of America as “a chronic, autoimmune disease that can damage any part of the body (skin, joints, and/or organs inside the body).” The immune system attacks the healthy aspects of the body. The Lupus Foundation also says, “Autoimmune means your immune system cannot tell the difference between these foreign invaders and your body’s healthy tissues ("auto" means "self") and creates autoantibodies that attack and destroy healthy tissue.”

A parent does not want to hear that their child has a chronic illness. My mother called my band directors. At band practice the next day, I spotted Mr. Everett leaving the field and hugging my mom. I was puzzled. I questioned her, and she avoided answering.

When I went to get the bloodwork done, I asked the technician why I needed bloodwork. She said, “The doctor ordered a lupus test.” I explored Google. Of course, I was terrified. How could I have a disease with no cure, no help, and no way out?

After my lupus “diagnosis”, I returned to see Dr. Gross. My ANA test came back negative. A second test was ordered, and I had to undergo a skin biopsy. A small circle was cut from my elbow in order to preserve my ability to play the flute.

The second ANA test came back positive. Something was wrong with my immune system. Dr. Gross admitted, “I have no idea what is wrong.” I stared at him in frustration, analyzing every word he said. “You’re an enigma.”

In this confusion, my legs were becoming more weak, and my arms were wasting away. I wore Sperry Topsiders without socks to eradicate the need to tie my shoes. If the laces were undone, I kicked the shoes off, picked them up, and tied them from there. Washing my hair was a taxing activity for my minuscule arms. My scalp had begun to itch constantly and flake. I was falling apart.

In December, I was referred to UNC Chapel Hill. Then, I saw Dr. Stein, an accomplished rheumatologist, and Dr. Morrell, a dermatologist. Both of them were bald.

In the clinic, I noticed 3 butterflies painted on the ceiling, and I smiled for a moment. Things changed as soon as the door opened. Dr. Stein examined me for over two hours, looking series and goal-oriented. This intimidated me. At the end of the appointment, Dr. Stein only said, “It’s not lupus.”
Dr. Morrell was, surprisingly, Dr. Stein’s opposite. He came in with a cheerful disposition, a friendly voice, and an inquisitive nature. He looked at my hands and smiled with satisfaction. “This is a classic case of Dermatomyositis.”
I left the hospital with an answer. Overwhelmed with joy, I went back to Google again as soon as I returned home. I was shocked by pictures of children far younger than I. Infants and young children looked sullen and lifeless as they were photographed. Some were immobile, using wheelchairs to navigate.
Mayo Clinic defines Dermatomyositis: “Dermatomyositis (dur-muh-to-mi-uh-SI-tis) is an uncommon inflammatory disease marked by muscle weakness and a distinctive skin rash. Dermatomyositis may occur at any age, but it mostly affects adults in their late 40s to early 60s, or children between 5 and 15 years of age. Dermatomyositis affects more women than men. The signs and symptoms of dermatomyositis usually develop gradually, over weeks or months. Periods of remission, when symptoms of dermatomyositis improve spontaneously, may occur. Treatment can clear the skin rash and help you regain muscle strength and function.”
Due to the weakness of my muscles, I was told to see a physical therapist. I met Kelly(a male physical therapist), Sharon, and Frank. I went two to three times a week after school to participate in an hour session lifting weights, struggling on the treadmill, doing water therapy, and enjoying banter from the other patients. One man, a preacher, would yell “Oh, Jesus” every time he performed a painful exercise. Rambo, a man in the military, was always there as well. There were very few patients near my age.
At my next appointment a month later, Dr. Stein brought in residents to look at me. He asked me about what the paint felt like. Did it hurt? Did it ache? Was it sore? How much pain? When did it hurt? Rate your pain. Dr. Stein wondered why I knew so much about Dermatomyositis. I was faced with the accusation that I was using the internet to “fake my symptoms.” He suggested that the pain was merely in my imagination. I spent that appointment with a box of tissues and a grimace. Dr. Morrell, once again, said “We vote Dermatomyositis.”
I ranted to everyone at physical therapy. Rambo called me Web M.D from then on.
To rule out problems with my legs, I was sent to get an MRI. The MRI machine looks like a giant tube designed to swallow patients. There is an opening at the end, and a patient lays on a platform and is transported a short distance into the machine. Bangs and rumbles resonate around the contours of the machine. Lights are also inside the tube.
The technician, Bob, seemed eccentric. He inquired, “What do you like in school?” I shyly answered, “English and band.” “D’you read any Billy Shakespeare?”

Sadly, the MRI revealed nothing. I still had no definite answer.

During the summer, Dr. Stein ordered an EMG and a muscle biopsy to see if my leg muscles were damaged. An EMG, or electromyogram, consists of needles being stuck into the muscles and receiving a shock of electricity. Of course, I had slight anesthesia, but I was aware the entire time. That was interesting. I remember my limbs twisting, twitching, and jerking with each shock. It was painful, but with the anesthesia, I didn’t care for much. The muscle biopsy was slightly pleasant. I was given cherry laughing gas. I remember the surgeons saying that “House M.D” is nothing like a real hospital experience. Then, I could not feel my body. I was merely thinking inside a vessel. Then, I was gone. I woke up, and I looked at the stitches on my left leg.

After weeks of limping even more than usual, it was confirmed: I had Juvenile Dermatomyositis. Inflammation was rampant throughout my body. I started taking 80 mg of Prednisone. Also, I received a Methotrexate shot once a week. Methotrexate is a chemotherapy drug that shuts down the immune system. My hair began to thin out, but at that point, vanity was beyond me.

I was dismissed from physical therapy, unfortunately. I missed listening to all of the therapists and patients talk about trivial things. Every time I walked through the door for my session, I was asked how school was, if that boy talked to me today, how I was feeling, what music I wanted to play because it was my turn today, and if I wanted to use the Chuck Norris machine.

I still had the rash on my hands and elbows. I continued to go to Chapel Hill, even though my strength was normal. I met a doctor from Greece, and he took pictures of my hands for a medical journal, considering that Juvenile Dermatomyositis affects 3 children in every million. He was the “Greek God.”

In order to eradicate the rash, I underwent an IVIG. IVIG is an infusion of cells from healthy donors to create a healthy immune system. I received a day’s worth of infusion. I woke up the next morning, ate a muffin, and got into the elevator to my room. I turned to my mom and said, “My head hurts.”

What was supposed to be two days turned into four. I threw up profusely, and I survived on crackers. I had the worst migraine of my life. As I was transported in a wheelchair by a large man, I realized the neurologist was sending me into the MRI machine. Yes, I had an MRI with a migraine, sadly.

After IVIG was determined to be out of the question , I started taking Tacrolimus, which extinguished my rashes completely. But, ironically, I remember and appreciate my scar on my left leg. It shows where I have been and the battle I have won.

I am fairly normal now, but I still see my doctors. Dr. Morrell gives his residents and interns medical Silly Bandz, Dr. Stein is slightly more pleasant, and my visits are somewhat delightful. I will never forget what Dr. Davey, a resident in Dr. Morrell’s office, said to me. “Medicine is an art.” Doctors never have the perfect answer. Doctors merely make educated guesses and hope for success. A patient is a canvas, and healthiness is the finished work.

Do I remember when friends affectionately called me a “cripple?” Of course, I remember. But, I remember being unique in my situation and growing as a person. I remember meeting lovely people and experiencing life as it was meant to be: fruitful. My disease is not gone. I am only in a stage of remission. I will remember the butterflies in any situation that forces me to grow up, if only for a few years.

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