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Friday
May202011

My Battle With Lupus: "Partying with Lupus...Sounds like an oxymoron"

The last few blogs talked about me dealing with Lupus personally, but how does Lupus affect interactions with others? Since Lupus isn't always a disease that is visibly noticeable, it's hard for others to grasp the concept that just because you "look" okay doesn't mean you're okay. Once I started learning how to listen to my body, I was a lot more responsive to when it told me I needed rest. Now, my high school crew (we called ourselves The Fab Five aka Femme Fatale) liked to party. Our meet-up night was Saturday, after a full day of being in church for Sabbath School at 10am, Divine Service from 11am-2pm, and Youth Service from 4:30-7pm, with an occasional meeting right after till 9pm. The plan would be to get home, shower, and hit the club. For those of you not familiar with NYC-style partying, the clubs don't close at 2am like most places. We'd stay till after 4am, and a few times we'd see the sun rise while having breakfast at a diner in full club-attire. I loved being around them, sharing jokes, dancing, sweating my hair out, and all that, but the next day...was like murder on my body. I'd have to sleep the entire day away just to feel halfway normal. I'd be achy and groggy for two days from the partying, not to mention from just being tired from being busy in church all day. Sometimes when I went out, I'd be ready to go home but didn't want to be the kill-joy and say anything. Eventually, I began missing the club-outings. I'd have every intention on going, but while waiting for the others to get ready, I'd just sit down in the living room for what seemed like a second that would turn into an hour later, me half asleep whispering into a phone "Y'all, I'm not coming. Have fun." I could tell they were aggravated but my body had already shut down not only because it was weary but even at the thought of running the streets past 2am. Soon, they stopped inviting me out.

The other issue they had was with the fact that while I wouldn't go party with them, I was in poetry spots every other night. To them, I just didn't want to roll with them. Maybe they thought I preferred my poetry friends to their company. They didn't understand that the average poetry venue let out at least by 12am, good enough time for me to have sufficient rest that night, I wasn't pressured to drink so my body wasn't dehydrated the next day, and I wasn't on my feet in 4 inch heels all night. Poetry spots were the perfect blend of work and entertainment for my achy body. But my friends really thought that I just didn't want to be around them anymore. I looked fine, I could go to the Nuyorican Poets Cafe any given night. Why can't I be the same fun, down-for-whatever Shanelle I was before?

In talking to other people with Lupus, I realized this battle was very common to us. Many of us lose friends because some people can't understand how difficult it is to pretend to feel "normal" and to act as if things within us haven't changed. Lupus changes your interactions with others; you can't do all the things you used to do without paying the consequences. I have friends that live in the Bronx that I don't always get to visit because while getting there when the sun is up is easy, I know the ride back home late at night is gonna be tiring. I have learned how to adapt a bit though. Now, I schedule naps prior to me hanging out late. I make sure I have nothing to do the day after I go out. I drink a LOT of water because the more dehydrated I am, the more drained I tend to feel. I don't go out EVERY night of the week; I pick and choose which events and hangouts I NEED to be at. Sometimes, instead of clubbing, I'll suggest we go out to a restaurant to eat. Bonding over food can be just as fun as bonding over a dance floor. Or we'll search for something cool to do that isn't as strenuous on the body. The key is finding the right balance because to end your friendships because of Lupus would mean you're ridding yourself of another positive outlet and support system in your life. Maintaining your friendships can keep you grounded, optimistic, and feeling some sense of normalcy in your life.

Monday
May162011

My Battle With Lupus- Part 5: Accepting Lupus; Accepting Life

 

One of the hardest things about Lupus is that your mind thinks you are the person you've been for the last __ amount of years, but your body becomes this unpredictable thing that contradicts who you feel you are. You've been a track star all your life; all of a sudden you get this disease that now makes you feel as if you're just "a person with Lupus." It changes the way you view yourself. You were once this strong, invincible being and now you're this fragile, achy weakling. Your optimism is challenged with every flare and bad test result. You feel as if you don't have control of your body so you can't possibly have control of your future. Every day is "Lord willing." It's so easy to slip into depression or get stressed out. Ironically, stress triggers Lupus flares so you end up worrying yourself even more sick. You go from seeing doctors once a year for a check up, to seeing one every few weeks, giving a gallon of blood each visit, and running tests anticipating further complications. How do you deal?

I went back to Utica College for my second semester in 2005. I already felt like I was on my own, so I acted as such. I didn't let people know about what I was going through on a daily basis, even when my pericarditis returned. I think one person saw me walk back to my dorm from class really, really slowly, clutching my chest, and asked what was wrong. I doubt I gave her a real answer. I'd still wake in the middle of the night to put a hot washcloth on my chest repeatedly so I could go back to sleep. I noticed this mainly happened on busier days, and I started to make a connection with how my body felt and how my day went. I went to the college medical office and the doctor gave me Arthrotec which cleared it up right away. I think around that time was when I began to see the value in taking my medications EVERY day and on time. (I used to miss doses pretty often.)

When I finally realized that being a part of so many organizations was draining me both physically and emotionally (the drama I was having with my sorority and with the radio station was just too much on top of everything else) I began to be able to predict the nights and mornings that would be difficult for me. That made me honestly say to myself that I needed to slow down a bit. I took a long hard thought about what made ME feel good and not what I wanted to prove to everyone. I defined myself by how 'necessary' I was to others and to my college. Being a part of all these things made me feel important and kept my mind off my ailment. However, what actually made me happy and gave me peace? I finally confessed to my dance team that I had Lupus and that that was why I avoided practicing 'full out.' I missed some campus parties to spend the night in relaxing, watching The Muppets Take Manhattan or the Matrix Trilogy in a robe while sipping on sparkling cider. (Calming, huh?) I learned to say no to organizations that needed my help but would really put me out of my way. I eventually stepped down as choir director. Instead of focusing on the sorority drama on my campus, I focused on the community service required and found healthy sisterly bonds with Sorors and other Greeks elsewhere that made me remember why I joined Alpha Kappa Alpha Sorority, Inc in the first place. I stopped fighting my body and overcompensating for the fear of losing these titles that defined me. I zeroed in on the organizations that best fit me and where my heart was. It became less about keeping busy and more about impact. (Thanks for opening my eyes to this, Paul Lehman.) I started to speak to a few people about what I was going through: Carolyn Carstensen, Alane Varga, Ken Kelly, and a local Lupus support group where I was the only person under 35 there. I realized that at the end of the day, I have to take care of myself and surround myself with people who want the best for me. Lupus doesn't define me. It's a part of me. When you let something define you, it controls you. I do not want Lupus to control me or my thinking. The fact that I am walking and speaking and living means I'm capable to be more than just a person with a chronic illness. Lupus is a part of my life. I had to stop fighting it and start working with it. 

 

Sunday
May152011

My Battle With Lupus- Part 4: My Heart's Emergency Room Visit

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." 

"What?"

"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.

Friday
May132011

Video: Lauryn Hill Tributes Bob Marley On ‘Fallon’

Most of you know how I feel about Ms. Hill...I love her for who she's been and the talent she has, but this is one of the few times I saw the spirit in her that I loved so much. I pray that this is a marker for things to come. 


2115131235 by yardie4lifever2

Friday
May132011

My Battle With Lupus- Part 3: Never Let Em See You Sweat

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)