NYC! Come eat & drink & dance while raising money for Lupus!

An Especially Sweet Thursday @ Honey Lounge

AN AFTERWORK SOCIAL EVENT TO BENEFIT TEAM LIFE WITHOUT LUPUS 

Thursday, February 2, 2012 @ 5:30pm until...

Suggested donation: $10+
(All door proceeds go to the S.L.E. Lupus Foundation)

Honey Lounge
243 West 14th St
New York, NY 10011

Hosted by Shanelle Gabriel (Singer/ HBO Def Poet/ Lyricist)
Music by the one and only DJ Kaos

21+ Over Only

Dress code: Sexy and chic
Gents: Collared shirt, No sneakers, No hats

$5 drinks for Happy Hour is from 5:30 to 9pm!
Also, bracelets and information on Lupus will be distributed

Lupus is an auto-immune disease that affects 1.5 million Americans each year. Visit:www.shanellegabriel.com/Lupus for more information.

For 40 years, The S.L.E. Lupus Foundation has led the way in delivering care, raising awareness, and educating people about lupus as well as in pioneering discoveries to find a cure through their national research partner, the Lupus Research Institute. 


***Not in NYC or busy that night? Please still DONATE in support of LUPUS by visiting: 
http://www.firstgiving.com/fundraiser/shanellegabriel/2012NYCHalfMarathon

30 Things About My Invisible Illness You May Not Know

Many prominent bloggers were asked to participate in this simple blog post to help spread awareness during Invisible Awareness Week (September 11-18th). I'm a lil late, but I still wanted to contribute, especially since many invisible illnesses, like Lupus, don't get the press or attention they deserve. 

30 Things About My Invisible Illness You May Not Know

 
1. The illness I live with is: Systematic Lupus.  

2. I was diagnosed with it in the year: I was diagnosed in July 2004, right after my Sophomore year.

3. But I had symptoms since: I remember the serious ones beginning in 2003 (migranes, joint pain, stiffness in the morning, and more). I'd had many of the symptoms for a while but I chalked it up to being a college student, being achy from my dance troupe, even from being a female. But when I lost my hair in June, that's when I couldn't deny something was wrong.

4. The biggest adjustment I’ve had to make is: not being able to rip and run 24/7 the way I used to. I'd feel guilty for not helping everyone, for saying no, or for not supporting every event out there. Now I have to balance more than the average person, relying on naps and rest days to keep myself healthy. I have to listen to my body or risk being achy and flared up the next day (or few days).

5. Most people assume: that I don't have my insecurities about the illness. I worry that I will get worse, that I'll develop more accompanying complications, that I'll have trouble having kids, or that it will effect my quality of life. I stay positive and try not to let the illness take over my life, but I have my fears.

6. The hardest part about mornings are: the initial wake-up process. There are days when I'm perfectly fine, and others when it takes a mental yell to my joints to get them to move. Also, how I wake up can actually determine the kind of morning I'll have. I've been abruptly waken up or had a REALLY high anxiety dream, and woke up so tense that it put me in a flare for the whole morning even achy till the afternoon.

7. My favorite medical TV show is: House. I always get excited when they say "Maybe it's an autoimmune disease? Lupus? Start them on 60mg of Prednisone." I'm like, "Yea, I take that too!!!" lol.

8. A gadget I couldn’t live without is: my cell phone. I handle EVERYTHING with it: phone, scheduling, poem/songwriting, business, etc. I swear, I've forgotten my mom's birthday because it wasn't in my phone calendar.

9. The hardest part about nights are: not always being able to enjoy the nightlife. I wish I could party till the sun comes up, but in most cases, unless I get a serious nap in, I'm super drained for at least a day or two. My body takes so long to recover. I also hate how drained I am at the end of the day...damn near narcoleptic. 

10. Each day I take: 10 pills & vitamins. (Trying to get off of prednisone... sigh)

11. Regarding alternative treatments I: believe in a healthy combination of both. I think the idea of totally ignoring western medicine is crazy. If something goes wrong, best believe you aren't going to a herbalist. However, it's also crazy to think that an illness INSIDE of you isn't effected by our diet or an influx of meds in your system. I detox and take supplimental herbs & teas in hopes of finding a balance in my body.

12. If I had to choose between an invisible illness or visible I would choose: I would choose to have an invisible illness. In the beginning I hated telling people I had Lupus because it made some people treat me like I was an invalid. I can only imagine if it was visable. It'd be more likely to control my life. However, it does make it hard to explain to others when you're feeling sick.

13. Regarding working and career: I've become such a structured person. It helps me get work done when I need to. Also, being diagnosed with Lupus made me see how valuable life is and how important it is to do what you love. It helped me choose my career.

14. People would be surprised to know: that I have used Lupus to get myself out of some sticky situations. I don't like to do that because I feel like that puts out bad karma that will come back to bite me later.

15. The hardest thing to accept about my new reality has been: thinking of myself as a person with an illness. Prior to Lupus, I'd never even been to the ER. Except for one minor surgery, I never saw a doctor for more than a check-up and ringworm when I was 12. Now, I see my rheumatologist every month, different specialists every few months, giving everyone damn near a pint of blood each visit. I can't always get everything I want to accomplish done, and I have to think about things that "normal" 20 something year olds don't. Yet, my mind is the same healthy person it believed it was before I even knew what Lupus was. 

16. Something I never thought I could do with my illness that I did was: live a normal life. It took a while to realize that there is no such thing as a "normal" life. We are all given our own obstacles and trials to deal with, some more than others, but not without our gifts, blessings, and the ability to find light in dark situations. It's our job to take OUR lives and make it a meaningful, amazing, and love-filled experience. 

17. The commercials about my illness: There are no commercials for Lupus, but I was excited to see a few print ads throughout NYC. Lupus is the disease where many have heard of it or know someone with it, but have no clue what it is. Hopefully more awareness can happen in the future.

18. Something I really miss doing since I was diagnosed is: organized dance. It always feels like I'm putting so much strain on my body when I push it to get choreography or do too much jumping. I still take a few classes from time to time. 

19. It was really hard to have to give up: not being invincible. Many of us think we can treat our body like a machine, overwork it and play it till it's run down. It's what we're told life is. "We'll sleep when we're dead." For a person with an illness, we can't afford to treat our bodies that way. I miss the freedom of being able to just wild out, but in the same breath, I have learned the true value of optimal health and taking care of the gift God has given me: my body. 

20. A new hobby I have taken up since my diagnosis is: I'm a movie girl... Netflix is my way to relax and get lost in the plot of another world.

21. If I could have one day of feeling normal again I would: I would spend an entire day outdoors, in the sun, exercising, eating grapefruit (as much as I love it, some of my medications conflict with it), and dancing.

22. My illness has taught me: Value your health and love life!

23. Want to know a secret? One thing people say that gets under my skin is: "Why are you taking that medication? Oh, I know a cure for Lupus. Just go to this website about this doctor in the East Congo/ France/ India/ etc." I'm so tired of people, who aren't medical doctors, trying to tell me what I'm doing wrong and that they know how to make everything ALL go away. While I do practice elements of Eastern/Alternative medicine, I cannot completely abandon Western medicine. I know you mean well but stop trying to fix me, people!

24. But I love it when people: open up to me. I appreciate the kind words, the understanding, the laughs, the deep discussions. It doesn't just have to be about Lupus. Sometimes just remembering how a like we all are can brighten my day.

25. My favorite motto, scripture, quote that gets me through tough times is: "There is always someone out there who has it worse than you do; count all of your blessings." Puts things in perspective.

26. When someone is diagnosed I’d like to tell them: to learn how to listen to their bodies (it'll let you know when to expect a flare), to make sure they fully take an active role in understanding & managing their disease, never be afraid to go to the doctor, and to always stay positive. The mind is a powerful thing. 

27. Something that has surprised me about living with an illness is: that you can actually LIVE with one. So many people think life ends when bad things happen, but there is SO MUCH worth living for. I really value every moment I get and I'm proud of how strong I've been in dealing with this disease. I surprise myself constantly.

28. The nicest thing someone did for me when I wasn’t feeling well was: surprised me with a massage. I thought we were just going to hang out and I ended up at a spa. My joints felt so amazing afterwards.  

29. I’m involved with Invisible Illness Week because: so many people ask me questions about this disease. Although I'm a week late, I still want to do my part in spreading awareness that you don't have to look ill to be ill. Also, I want people to know that just because you're ill, doesn't mean you have to live your life as a sickly person.

30. The fact that you read this list makes me feel: exubriant and optimistic!

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.

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. 

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.