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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: optimistic!


What Is Your Cupcake Worth?

As a Utica College undergrad living in Bell Hall, I frequently made use of the kitchen that they had on each floor of the dorm. It was my way to relieve stress and to stop myself from binging on creations from the cafeteria waffle maker. One Sunday morning, I was up making what Trinidadians call "Bake & Saltfish," a traditional breakfast dish of fried dumplings and seasoned salted codfish. While making her rounds, my floor's Resident Assistant (who happens to be White American) walks into the kitchen to see where the lovely aroma was coming from. After explaining to her what was in the pot, she says, "That smells great! Wow. You people are ALWAYS cooking." She leaves, and I have one of those delayed reactions. "Wait…who are YOU PEOPLE?" Then I thought about the demographic of people that really do cook in my dorm (myself, the african student upstairs, the other West Indian girl down the hall, and an African American guy who used to be a chef). I shrug my shoulders, and continue cooking. 

Funny how food can lead to sharp discussions on race. We see this in the battle against the UC Berkeley Republican Student Group regarding their controversial "Increase Diversity Bake Sale" scheduled to be held tomorrow on campus. The goods sold would be priced according to race, gender, and ethnicity as a satirical way to show opposition to the SB 185 bill in the works that would allow the University of California and Cal State University to consider race, gender, and ethnicity in student admissions. So, that freshly dorm-baked cupcake you might want to buy will cost $2 if you're White, $1.50 for Asian/Asian Americans, $1 Latino/Hispanic, $0.75 for Black/African American, and $0.25 if you happen to be Native American. And, even better for me, all women get $0.25 OFF!  The UC Berkeley student senators voted yesterday to condemn discriminatory behavior and they believe this falls into that category. I disagree. I don't believe that's the real cupcake issue.

My problem with the bake sale is not that prices were put to ethnicities and genders. If this bake sale was ACTUALLY about increasing diversity, I would have been all for it. This would have been a creative way to illustrate to the campus the way value is placed on people of different backgrounds in our society. However, this event was strategically placed "across from the Affirmative Action Phonebank" which supports the passing of the SB 185 bill. The bake sale wasn't meant to reduce the value of the ethnicities and genders represented, but to show how they believe Affirmative Action works to make it so terribly easy for things to be attainable for Native Americans, Black/ African Americans, and Latinos. This is just another round in the perpetual battle against Affirmative Action which many Whites, see as a form of reverse racism while some ethnic minorities view as a form of unwanted coddling. Even Francisco Loayza IV, the treasurer of the Republican group, stated "People are being judged by their skin color (in Affirmative Action policies). I don't want to be judged because I'm brown." Sorry to break the news to you, Francisco, but you will be judged because you are brown. That's the way America works.

Affirmative Action is NOT the act of bringing in unqualified applicants to take the space of "good ole American White Folk." When used the way it was created, Affirmative Action doesn't give preferential treatment to minorities. It understands that educational and economic biases and barriers still exist in the world we live in. It realizes that resources are NOT equally distributed throughout our country, and this puts some individuals at a severe disadvantage. As documented by the National Assessment of Educational Progress, we see there is an achievement gap between the races. Children of color tend to be concentrated in low-achieving, highly segregated schools, and this plays a role in the quality of education they receive. During my career, I have witnessed extremely bright students in the inner city public school system that, if given better access to higher standards and exposure to better surroundings would have excelled beyond even their own imaginations.

Affirmative Action also realizes that certain races and ethnicities HAVE been wronged throughout America's history and that there are some lasting effects on their growth as a people. Fighting against this is almost saying, "How dare they offer new opportunities to the descendants of Native Americans who were victims of genocide in order for us to have this lovely land we live in. They should be happy with the tax-free reservations we gave them that shrink in size every year." Also, due to the negative experiences and labels given to women and many races in the history of our country, what Claude Steele labels stereotype threats exist, where these groups are "at risk of confirming, as self-characteristic, a negative stereotype about their group" regardless of actual high-ability and talent. Women are still paid less than men for the same jobs, Latinos are viewed as illegal immigrants used for cheap labor, and African Americans are viewed as ebonics-speaking thugs. Without the proper support, it's easy for members of these groups to fall prey to self-fulfilling prophecies and stereotypes. Affirmative Action sees these exterior barriers to their success and tries to help balance the equation.

Diversity should not be such a dirty word. Promoting it doesn't mean lowering standards, nor does it mean the 33% of White undergraduate students enrolled at UC Berkeley will end up much closer to the 4% of African American/ Black or the 1% of American Indian/ Alaskan Native student percentage presently enrolled. In fact, it may actually help White males since there are 6% less men than women enrolled and 10% more Asian/Pacific Islanders in the UC Berkeley population than Whites. Diversity doesn't just mean more women or minorities; it means more EVERYBODY. It is not a hand out to undeserving individuals especially when studies show that "black students who attend the most selective schools in the country go on to do just as well in postgraduate programs and professional attainment as other students from those schools" and every year, we see a large increase in the undergraduate enrollment of women. The UC Berkeley Republican Club should seriously take note of their prices and understand the implications of how races are actually represented and viewed in the education system. Instead of discussing the Affirmative Action way for a "cupcake" of equal value to another to be attained easier, they need to question why the White "cupcake" is for many places valued at a higher cost.  


Learning How To Shoot (A Poem for My Dad)

Learning How to Shoot 

Labor Day is family reunion to me

My blood runs thick with Trinidad, T&T

So when my Daddy tells me to meet him on a late August Day in Brooklyn 

I know who I'll see

Him, he pardnas and dem

This time was no different

He introduced me to a man and his son

The son eyeballed me like I was a junie mango

As he said "Wow, Mr Gabriel. Your daughter is beautiful."

My father paused to see my reaction

His father half-laughed and made an interjection 

Between the failed pick-up line & the dead air

He said, "Son,

You better watch what you say to Clyde's daughta. 

The man has a gun."

He said it just for fun but on the real

Every Mas Camp knows for a fact my dad has one.

The son's mouth was emptier then when a party was over 

As my dad put his un-ironed hands on his shoulder

"Young man, to tell you the truth,

You don't have to worry about me 

Cause I taught my daughter how to shoot."...


This poem goes out to the Daddies girls 

Who's father taught em to take shots of Grey Goose

Long before the legal limit

So you'd know not to

Go back to

A glass you left and walked back to

Who showed up at school when that lil boy hit you

And none of the lil boys bothered you ever again

This is for the Daddies girls

Who know the statistics

But who's experience was different

Who's father taught you to walk 

On the inside of the street cause "you aren't for sale"

Daddy's girls who moms beat their tail

When they misbehaved

But the true moment of fear came

When "I'ma tell your father" was said

Daddies girls who fed 

A grown man imaginary cookies on a Rainbow Brite tea set

Who gambled in card games with them

Peppermints to make bets.


See, my mommy taught me to be nurturing

How to love everyone else outside myself

But my dad taught me not think it vain to give myself compliments

How to balance the emotional me with thinking logically

This goes out to all the girls

Who still call their daddies at half past 3

When their car won't start after they've left the party

This is for the Daddies girls

Who've gone to school with their hair in a lopsided ponytail 

Cause clips and bows only made him more confused

Daddies girls taught to flash firecracker laughter to light up a room

Taught how to create the perfect blend of fear and admiration

Taught how to shoot vodka without the chaser

Dads who taught that the man should be the one to chase ya

Who raised their daughters like sheltered sons

Made them appreciate old westerns and the NBA

Who told em to go for their MBA even thought they only made it past the 12th grade


This poem goes out to the Daddies girls 

Who's dad taught em to take shots with sarcasm

Told em they inherited handguns for eyes

Scalpels for smiles

Could form a masterpiece with a kiss 

Or let those same lips be a man's demise

Who told them it's okay to cry

But only the first time cause it shouldn't happen again

Kryptonite to new boyfriends

Didn't scare them all away

Only the ones who's casual attire and career goals didn't make sense

This is for the Daddies girls

Who were taught how to shoot free-throws

Who are trained parallel-parking pros

Can quote his unconventional wisdom like

“You know, 85% of people in this world are stupid...Look, look, there another one goes.”

or “Give it your best and there’s no limit to where you can go.”


This is for the Daddies girls

Who know that a woman scorned can make a bitter mother

Mothers who think their failed relationship

Should end the one dads have with their kids

Wishing they could suck out his DNA 

Like it was poison and erase any trace of lineage in their kid's face

This is for Daddy's girls

Who's father may not have stayed

Maybe even played the heck out of their Mom

But while he didn't give her the love and respect she was due

He gave it to you

At the end of the day

He showed you what a man should and shouldn't do

Daddies girls who know that perfection 

Isn't part of the human equation

That it isn't about getting all the answers right

And even if he messed up more than a few times

You appreciate that he took the time before he closed his eyes

To try.

To my daddy/ It seems the older I get the more I think we look like/ although I was born high yellow/ and you're more like quarter to midnight./ Skin rough like Chaguaramas beach./ Voice vibrates like steel pan melodies./ Sandpaper skin singing within the crevices of the present me./ I swear I'll never grow too old for nicknames and I'll still open the car door for you from the inside./ I never believed in your infallibility./ Maybe that's why/ you're still untarnished in my eyes./ I love you for all you've taught me./ You taught me to shoot but on most occasions,/ to put away my gun/ Taught me how to wine,/ how to get my way without wining,/ how to be wined and dined./ The first man to tell me I was beautiful and to look at me in awe./ All these dudes get their lines from you,/ So it takes more than speeches of silk spilling from slick jaws to get me to pause./ You set the bar high for anyone desiring to take your place as the man in my life./ And whoever it is that I deem worthy to bring/ will be a reflection of you,/ in honor of you./ He'll be my prince charming/ but you'll still be my King/ I'm a daddy's girl,/ gunning down stories of all black men being absent or in jail./ Firing at tales of failed fathers and dead-beat males/Your love for me/ my love for you is living proof/ That there are still a few strong women out there/ who's dad's aim in life was to teach their daughters how to shoot.


My Birthday Wishlist! (Mark June 27th off on your calendar!)

It's that special time again! In 10 days, I'll be celebrating my Golden Birthday... I'll be turning 27 years old on the 27th of June! Just in case you lovely people have NO CLUE what to get me, as always, here's my birthday wishlist. 

โœ“โœ“โœ“ (Thanks, Daddy) 1. Sega Genesis (in new or near new condition):
The Cancerean is known for her nostalgia, and this is DEFINITELY a throwback. A Genesis is the only gaming system I've ever owned. Call me old-fashioned for being perfectly content with an arrow pad and 3 buttons to work with, but I would rather my old 24-bit Genesis to the complexity of any other game system. Besides, I recently got ahold of the Sega game "Michael Jackson MoonWalker" and I'd LOVE to be able to play it.


2. Piano and/or Guitar Lessons:
I think guitar lessons were on my list 3 birthdays ago, after I first got my guitar (which presently serves as a decorative piece in my bedroom). I think it's time for me to get on it. But lessons in either instrument would greatly help me as an artist.

3. Tickets to Jill Scott's Summer Block Party Tour:
Just the samples of her new album have blown me away. Seeing her live is always inspiring, and this new album sounds AMAZING!

4. Studio Time:
Chris Belmont aka Rock from
Jah Rockin' Productions would be glad to help you help me get this 2nd album done. *smile* (347)-240-4881

5. Bella Cucina Cupcake Maker:
I love food...End of story. But I really love making things to eat with my own hands. This machine would make it easier, and hey, whoever bought it for me would benefit from it as well. 

6. A Copy of "A Belle In Brooklyn: The Go-To Girl for Advice on Living Your Best Single Life" by Demetria L. Lucas:
I love her blogs & articles in Essence, I've met her briefly, and I believe in supporting the great work my sisters do. That being said, I want this book!

7. Services for "Bobby Drake":
My Toyota Corolla named Bobby Drake always welcomes gifts from friends, whether they're gift certificates for Oil Changes and Engine Flushes or a full detail. Bobby's engine will purr with gratitude. 

8. A Bedazzled Microphone:
Nothing says, "I'm a star" like a mic covered in sparkles. I have the mic, I have a friend that does it, just haven't gotten around to paying her to do it. $300 is a bit of change.

Sidenote: I honestly don't usually get anything from my wishlist for my birthday, but I really get enjoyment from thinking and writing about the things I want. I'll probably just get them myself later on in the summer. lol. 


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.