My family really never believed I had Lupus, especially my mom who felt it was a lack of rest and all in my head. "Your mind can do things to your body." It wasn't until December that I think they all accepted that I had this disease and things had to change for me. I'd gotten an internship during Christmas Break at EMI Music Marketing Group since at that time I didn't think a career as an artist was possible. I began learning all about the financial and marketing side of releasing a record and made some good connects. However, on the fourth day of working there, I noticed this really bad chest pain that hurt when I breathed or leaned back. I ignored it because I didn't want my boss to think I was unreliable or sickly, but then it got worse. I asked to leave early. I called my mom before I got on the train and told her I was going to the ER once I got back. I got on the train and the pain subsided a little bit. I convinced myself it was just really bad gas, and didn't go to the ER. Matter of fact, I went to the movies. The pain wasn't as bad so I thought I was getting better.
The next day, I get to EMI and the pain comes back. I leave an hour early and my boss tells me not to come in the next day if I'm still sick. I get on the train and it subsides a bit. I meet up with my dad who at the time drove the city bus for the MTA. I take the B46 up and down Utica Ave with him, talking and laughing. We get to Empire Boulevard, and the pain comes back with a vengeance. I ask him to let me off the bus at Church Avenue and I catch a dollar (shared ride) van to my house. By then, breathing sends stabbing pains thru my body. I call my mother to tell her that when I get home, we're going to the ER. She says, "Shanelle, you just need to rest. Your body is just tired," and hangs up on me. I walk to my house slouched over, clutching my chest. I get there and my mom is doing whatever it is moms do in the house when they aren't cooking. I tell her we have to go, and she proceeds to yell, "Since you've been back from school, you haven't rested. You just need to rest." Somehow this convinces me to attempt to lay down. It hurts even more, so I sit up. She stands over me and tries to push me back down. I tell her it hurts. She argues with the air as she leaves me in the room, saying things like "It's all in her head. She doesn't know when to stop. Her body needs rest." I call for back-up: my sister Lianne, the other nurse in the family. I tell her I have chest pain and I can't breathe, and that Mommy wasn't listening to me. She comes over, sees me in pain and says, "Shortness of breath and chest pain? We have to go to the hospital. Mommy's just scared. She's never been through this, seeing her child be really sick before. Forgive her. It's a lot to take in." We get up, and I suggest we go to SUNY Downstate since my rheumatologist practices there.
Lianne drops me off as she looks for parking. I've never EVER been to the Emergency Room for ANY reason, so I didn't know what to expect. I walk in, approach the counter with the glass window and see that it's covered with blinds. I can't tell if anyone is behind it in the office or not. I see a sign on the wall that says, "Write your name and complaint on this slip of paper, stamp it with the time, and slide it under the slot by the window. I follow the directions and sit in pain. There are a few other people waiting with me in the room. I try to relax and wait my turn. Ten minutes later my sister rushes in and stops abruptly when she sees me sitting down alone by myself. She yells, "Why haven't you seen a doctor?" I tell her I'm waiting my turn. She looks around for a sign that's supposed to be highly visible but ends up being all the way beneath the counter a foot from the floor that says "If you have chest pain or shortness of breath, see a doctor IMMEDIATELY." How the heck was I supposed to see that? She starts knocking on the covered window like a mad woman then proceeds to knock on the door to the medical office. A nurse happens to be coming out mid-casual conversation with another nurse. My sister interrupts her.
"My sister is having chest pain and shortness of breath."
"Did she sign and stamp a slip and slide it under the window?"
"Yes, but you mustn't have heard me. She can't breath and her chest hurts. That means she needs to see a doctor immediately. I'm a nurse."
"Well, the doctor is upstairs so she'll have to wait."
"The doctor is upstairs, so she'll have to sit and wait. He'll be back soon."
As the woman casually goes back to doing what she's doing, Lianne says, "This place is a hot mess. Let's go. Folk could sit out here and have a heart attack while waiting for them to get to a 'slip of paper'." We rush out. She calls my mother, who we pick up on the way to NY Methodist Hospital in Park Slope, Brooklyn. MUCH different experience. I get in, my sister tells the front desk nurse what's wrong, and immediately I get wisked off in a wheelchair to the medical office. They take my vitals and my medical history, and give me something for the pain. My mom's a different person now, rubbing my head and wiping my face. The doctor tells me they want me to stay overnight so they can figure out exactly what's wrong. This was my first time admitted to a hospital. I'd never needed more than a check-up growing up, so this was a new world to me. I tried to think of it as a bit of a holiday, except for the constant needle poking and med students asking the same questions over and over. "Have you been hospitalized before? When were you diagnosed? On a scale of 1-10 how bad did not being able to breathe hurt? Are you sexually active?" (No clue what the latter has to do with my chest pain.) I slept through the night and wake up in pain again. I must've sounded like an addict the way I begged the nurse for "whatever it was they gave me when I came in." The doctor comes in and explains that the hospital doesn't have a rheumatologist so they're working with what they have. They contacted my doctor at Downstate and were waiting to hear back, but in the meanwhile, they tried to figure out what was wrong.
Hospital life wasn't so bad. The food was edible, I had all the apple juice I could down, and sleeping on an adjustable bed was pretty awesome. I got some reading and writing done, but sadly realized that I probably won't be able to go back to my internship at EMI. They ran a series of tests the next day. Because Lupus causes a series of inflammation in various parts of the body, it turns out I developed a common complication of Lupus called Pericarditis, inflammation of the membrane around the heart. That's the reason the complication that felt like a freaking heart attack. They prescribed me some medication and I went home.
After this visit, I noticed that my chest was more sensitive to flares than the rest of my body. For example, if I got worked up, I'd feel tension in my chest and the next day it would be just as sore as my achy joints. The Pericarditis didn't go away fully though; I woke up a few times in the middle of the night in pain. When it happened, I'd stand over the bathroom sink, repeatedly dampen a washcloth with hot water, and compress it to my chest. I didn't tell anyone about it, especially since I spent the last few days of my Christmas break arguing with my mother about me going four hours away back to school. She felt believed it was too far from my support system (my family and my rheumatologist) to go back. But because to me no one believed me when I said I had Lupus in the first place and that telling them too much about it usually caused an overreaction, I felt like I had to go at this alone. I didn't feel like I had a real support system. It's almost as if I wanted to protect them from the Lupus as well. So, I went back to school.