Before the summer of 2007, "moderation" was not a word I liked to hear. I had severe fear-of-missing-out syndrome and would stay out all night on weekends "just in case" I missed something major. I was working long and late on everything at a new job (the coveted magazine fashion assistant position!), ate terribly, and looked forward to summer weekends of rushing to the beach, blowing it out, and rushing back to hectic city life. I was living off my vanity and confidence, and I was burning the candle at both ends and straight through the middle.
That all came to a full stop in September of that year, when I developed a hard, painful, and itchy rash all over my neck and face. I felt nothing but disappointment initially -- here was my chance to make a killer impression on my new coworkers, these chic and well-established women whom I worshipped. They had given me this amazing opportunity "a million girls would die for," and I had given them what I considered to be a shameful representation of the magazine. I was devastated -- nothing could be worse to a 23-year-old's ego. But I figured it could be fixed by a quick visit to a dermatologist, so I found the first one close to the office and went.
Only the rash didn't get better. It got much worse. I ended up in the hospital three times before the end of the year, including on Christmas Eve and on New Year's Eve. I dropped from a healthy 140 pounds on my 5-foot-8-inch frame to a scary 113 pounds. My naturally tan skin was losing color, my hair was falling out, and I was mixing up dates and numbers -- hardly an asset to the busy (yet patient) director I was assisting. To this day, my friends ask me how I got up and went to such an intense job every day. The answer is still "I don't know."
After a year, a team of six specialists, eight medications, and countless nights mourning my "old" life and feeling desperately sorry for myself, there was a conclusion: I had lupus. Systemic Lupus Erythematosus (S.L.E.) is a chronic autoimmune disease that has no known cause and no known cure. It can attack any organ of the body at any time and affects each patient differently. My targeted organ was my skin; others have problems with their heart, joints, lungs, or kidneys. My initial inflammation flare lasted about a year, during which my body just went completely haywire and began attacking itself, unable to distinguish between foreign invaders and healthy cells.
Every day more than 5 million people worldwide deal with a very personalized form of this disease. They are overwhelmingly almost all women -- more than 90 percent -- and are usually struck in the prime of their lives, between 15 and 44. When lupus goes unmanaged, it can be fatal. Novelist Flannery O'Connor died from it, as did Lady Gaga's beloved aunt, Joanne Germanotta. Through a life of moderation, patients do have a better chance of not having flares, which can last for anywhere from six weeks to years.
So now what? I have chosen a career path that in no way helps my situation and live a city that makes my life decidedly harder than it would be somewhere else. With exercise, a healthy diet, taking breaks when I need to, sleeping enough, and a strict regimen of medication, I am living that dreaded life of moderation while still keeping my dreams and goals intact. Turns out, it's not so bad: Getting older coincided with self-control. I'm now a freelance fashion consultant working for magazines and event companies, which allows me to work project-based and take breaks from life when I need it. I'm celebrating how I live with lupus on World Lupus Day, May 10. Please help the fight against lupus by visiting www.lupusny.org and www.worldlupusday.org for more information and how you can help spread awareness.
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