I seemed to have taken being diagnosed with a chronic illness REALLY well, huh? Well, for the summer, I kept it moving as usual. I didn't do too much during the day other than work. I took my medication and my hair came back, slowly but surely, so Lupus wasn't a big deal to me. The drugs kicked in and I started to feel a lot better. I got back to college upstate to begin my junior year very optimistic. A little too optimistic. I didn't tell anyone about my new illness except for a handful of the people I was close to. Between folk telling me they knew someone who died from it (I heard that wayyyy too often) and others trying to coddle me ("Shanelle, why are you here? You should go home and rest" even though it's like 9pm on a Saturday night), I didn't like the responses I'd get. I didn't want anyone to worry about me or think I was now handicapped so not only did I stay active in the MANY extracurriculars I was involved in on campus, I pushed myself into overdrive. Like the woman who gets plastic surgery before she actually needs it, I figured I'd work even harder to make sure that people never think to see the Lupus in me. I went harder in dance troupe practice even when my joints hurt, I continued to be the lead volunteer for everything I could be a part of, and I took on the positions of Junior Class President, Gospel Choir Director, the radio station manager, and was on the line that rechartered my sorority Alpha Kappa Alpha Sorority, Inc on my campus. I went home for fall and Thanksgiving breaks and I'd sleep like med student between rotations: dead to the world and like it was the only sleep I'd get for a while. My friends that knew I had Lupus didn't know enough about it to tell me that I was only damaging myself more by doing this. I showed them all smiles so they believed I was fine. "Never let 'em see you sweat." I remember thinking that if I ignore it, it'll go away. If I pretend it doesn't exist, it won't bother me. However, now that I knew what to look for, my body began speaking to me a LOT louder when it was overwhelmed. It seemed like I was always achy and drained but being busy meant I didn't have to think about it. If I didn't catch my breath or give myself a moment, I could easily overlook the fact that I was tired. To me, ripping and running was better than the thought of being laid up in a bed. Ironically, that's where I'd end up in a few months…
(Continued: Part 4- My First Visit to the Emergency Room)
It was my first time seeing my PCP, Dr Mahoney since I'd just changed insurance companies. He tried to do all the preliminaries and I interrupted him. "Look at this!" He examines my scalp, then pulls away confused. He looks again, asks a few questions that I said no to, and then proceeds to write notes with a baffled look on his face. I think to myself "Oh no! I have one of those diseases that, like, 3% of the world population have!" I offer suggestions to help his loss for ideas on what my hair loss could be.
"Could it be stress?"
"It wouldn't look like that."
"Um, I had a relaxer a month ago. I know it didn't burn, but maybe…"
"No, you'd have at least a scab."
He's rubbing his forehead staring into his notes. I give up suggesting things and he decides to run some blood tests. On my way out, I mention that I had a few other complaints but we could get to it after we figure out what's wrong with my scalp. I'm not one to get people worked up, so I told my mom the doctor said I'll be fine. When my answer sufficed for her, I stopped thinking about it.
I return a week after and Dr. Mahoney is ecstatic. He immediately sits down and says, "Shanelle, I think I've got it. Do you know what Lupus is?" He's like a kid who discovers a tub of water balloons on a hot summer day. I say no, then correct myself. "Yes. Mercades from America's Next Top Model has it." He runs off a checklist of symptoms. Low and behold, my list of issues above were ALL listed on the 11 symptoms of a Lupus patient. The blood work supported this theory, but I needed a rheumatologist to officially diagnose me. In walks Dr Dvorkina, a blond-haired, bright eyed, sweet Russian lady with a heavy accent. Dr Mahoney introduces us, and Dr D goes straight to work flipping lab results, touching joints, squeezing my fingers, and asking questions. She then looks on my face. "Look at the Butterfly." I'm confused because the last time I was on South Beach, I KNOW at the last minute I said no to that tattoo. "It's just a dark area on and by the bridge of your nose. It's said to resemble a butterfly. Dear… Yes, you have Lupus." She schedules another appointment, tells me to get off birth control (darn, back to having cramps again), and speaks about medications. I'm relieved. "Whew, it's a disease they have medicine for. I'll be fine." I go to work. Yes, I get diagnosed with a chronic illness and I decide to go to work. SMH...
I get to work, which was a record store called Beat Street in downtown Brooklyn. I tell my co-worker of my doctor visit and results. Her hands flutter to her mouth. "Shanelle, my aunt died from Lupus." Um, okay. Not the best response for someone newly diagnosed. I hadn't even had time to google it. She seemed concerned for me but I figured her aunt was older which made it harder like adults with chicken pox. I head home and my internet was acting up (darn dial-up), so I went into my handy dandy Encyclopedia Brittanica from, oh, 1989. I look for the section on Lupus. Very accurate information on the symptoms, however the prognosis written there said "Most cases of Lupus result in death." I close the book, and still refuse to face my mortality. I told my family and they didn't believe it. Me having Lupus would make me the first person in our ENTIRE immediate family to have anything other than asthma and skin allergies. They told me to go for a second opinion. My mom just felt like I needed to rest because I'm always so busy. I get the second opinion from a Rheumatologist in Park Slope and she confirms it. I start taking Plaquenil and Procardia, the first of many drugs.
(Continued tomorrow- Part 3: Never Let Em See You Sweat)
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)
Check out my boys Phase One & Asa Buchanon's new video for "Crystal AX." ILLLLLLL!!!!
Colorist: Eric Alvarado