Today, May 10th, 2011 is World Lupus Day!
It almost feels wrong to put an exclamation point at the end of that header especially because Lupus tends to cause a person to not feel so !. However, it's beautiful to know that one day out of the year, us Lupies get some love.
In honor of Lupus Awareness Month (and World Lupus Day- May 10th), I'm telling my Lupus story in a series of blogs throughout this week. I'll speak about being diagnosed, complications, my personal battle, as well as where I am with Lupus now. Hopefully this will give some insight on what Lupus is and the way it impacts a person's life.
Part 1 : The Magically Appearing Symptoms
In 2004, I was diagnosed with SLE Lupus. When did it start? I'm not quite sure. The earliest abnormal thing that I remember is getting these severe headaches on random nights that would awake me out of sleep. I'd have been asleep for several hours, and my eyes would just dart open out of nowhere in pain. It hurt so bad that I'd cry myself back to sleep. I went to my college medical office where I was told "It's probably a sinus headache," and given Sudafed. (Score 1- Lupus, 0-Medical Practitioner).
Later, I would notice that getting out of bed started getting harder, not because I was a college sophomore partying every night. I wasn't. I'd try to go to bed different hours of the evening and night, hoping to find the right time and the correct amount of hours to make me feel rested. To no avail. I almost had a narcoleptic style of sleeping. I could sleep anywhere, at any given time: in class, behind the register at work, on a party bus (hey, I was tired), in the cafeteria, wherever my body required it. And I couldn't control it. I was ALWAYS tired…but I attributed it to just being busy. I couldn't fathom that anything was wrong with me. I ignored the joint pain in the morning that seemed to cause a slight "pimp walk" on my right side. I ignored the fact that my roommate on a few occasions had to put my bookbag on my shoulder because my wrists hurt too much to pick it up myself. When she said, "Shanelle, something is wrong," I explained "I'm probably just sore from practice with my hip-hop dance team." I figured I couldn't donate blood because I was anemic "like most women are." I ignored the American flag colors my fingers would turn in the cold. Hey, I went to school Upstate New York. That weather is liable to do something to you, right? Wrong. When I came back to NYC for the summer, riding the train more than two stops was painful for me because the air conditioning would cause my feet and hands to go numb and hurt. Crazy, huh?
So what finally made me go to the doctor for a diagnosis? It was summer break from college, I assumed all these symptoms would go away with rest in my own bed. Those evil twin beds were the problem, and my Queen-sized pillow top would provide the necessary healing. A few weeks past and I forgot what it felt like to feel normal in the mornings. I was preparing to go out one weekday in June, and I noticed something felt different as I combed my hair. I got a hand mirror to see what it was and THERE! Two patches of hair were gone right in the middle of my scalp. Clean like a baby's bottom. No scabs, no redness, nothing. It almost had a shine to it. I yelled "MOM!!!" and she came running like I said Oprah was giving away free trips to her show. I showed her and she suggested I go to the doctor. I made an appointment that day. If it wasn't for vanity…
(Continued tomorrow- Part 2: The Happy Doctor with the Diagnosis)