Thursday, December 16, 2010


I've been in love lately and I thought you should know. You're the first to know...

It isn't something new. I've been in love multiple times. I won't say "I thought I was in love in the past" or "Oh that wasn't love" because I actually loved every boy/man I was with. Every love was different and each time a relationship ended in tears, curses, or ignorance...I was able to grasp a better understanding of the qualities I did and did not want in or from a relationship. Past relationships were kinda-sorta fucked up, but love is love and to be in love is so damn lovely.

It's been a little over two years that I've been single now. My ex-boyfriend dumped me while I was in the hospital and that was that. I was that stalker ex-girlfriend who just didn't understand why he would do such a thing. After the break-up, I called him non-stop and even creeped him during work. I never cried for anyone as much as I did for him. I didn't think I could ever love again, I was so fuckin' miserable. I loved him so much that life became unbearable without his presence. Saving dates, candy wrappers, and every other emblem that represented him...this was love. Well, he didn't understand me. However, if you my friend are reading this, just know that I've moved on and you were right, you're not for me and the bigger truth, I'm not for you.

Because he dumped me around the time of diagnosis, I became very self-conscious about myself. I felt ugly and unwanted. And with all the physical changes I went through, I was a complete reck. Guys weren't checking me out like they used to. That was the biggest shock for me. And also the biggest realization.

Now, I won't lie and say, looks don't matter. Looks matter. I know they matter to you. And they matter to me. But obviously, looks aren't everything. I like my men tall and built, with big hands and a nice neck. Don't ask me why hands and neck. So, anyways, all except for one guy fit these characteristics. And if that "one" person is reading this, don't kill me...even though we are neighbors.

Now for the juicy stuff. I've been talking to a man lately. He is a man. A total hunk. Patient, relaxed...caring, honest, trustworthy...makes me feel beautiful...asks if I've taken my medications or not. Understanding, funny, cute laugh...crazy, I'm telling you, words are not enough. He's my jaan. My jaantush. My baby. I feel so good around him. Our initial conversations were...I don't know the word, but I was always nervous and picky about what I said and how I would say it. Loss of words, disarray of thoughts. And for a person who talks a whole lot of shit, when I have nothing to say, I know something is wrong. Especially if it is with a man so cool, calm, and collected...this is attraction. I'm so attracted to him, all I want to do is hug him. And of course the other X-Rated stuff, however I won't go into those details. I feel like jumping around the house. Sometimes I'm so energetic while talking to him, I go up a flight of stairs without thinking about the existing pains.

Over the span of two months, he has become a friend, boyfriend, and soon to be husband. We're thinking too much into the future, but basking in these beautiful thoughts makes me happy and smile. Sometimes we talk for hours and sometimes we bask in each other's silence. And even his silence makes me smile. I'm attached to him, yet I am able to easily detach myself.

He also loves me. And after openly telling him about my life and Lupus, his affection and respect gives me hope. His love gives me hope.

No picture, clear description, or name will be provided. Some things are better left unsaid.

There's more to say, but I'll leave that for my next post.

Monday, November 29, 2010

Friends, Food, and Fierce Times.

This is going to be a legit post. I haven't written in a long ass time and I've had the topics in mind but haven't had the time to just sit and write. I'VE BEEN LAZY. BUT I'VE ALSO BEEN HAVING SO MUCH FUCKIN' FUN. Don't mind the caps. The past few weeks and days have been filled with fun, fun, and more fun. For once the oh-so-infamous quote: "Live your life to the fullest," is true with me. I've been spending each day living as if it's my last. Okay, maybe not last, but I've been livin' it up and also drinkin' it up. I've realized "living" can mean different things to each person. To me it means to enjoy the company of friends and family (this can be iffy sometimes as some family and friends are a big BORE), go out and be somewhat reckless (but make sure your ass don't end up in jail, even though that would be an experience), eat good food at good restaurants (try KOSHER), minimal study time (but get your work done), and being a risk-taker or at least man-up to try new things.

My friends continuously poke me to mention them on my posts (trust me, it won't make you famous. And if I write about you, it will be something embarrassing!). But I love my friends. These people, too many to name (I'm fortunate to call many people my friend), don't judge on my disabilities and really make me feel special. Hence, why I'm such a diva. But without these boys and girls, I wouldn't be livin' it up as I am right now. Adventurous, smart, funny, dramatic, sometimes all, my friends are amazing.

However, before I talk about some past events, I'd like to update you on my health and academic situation. I'm only taking one class now, as I've dropped BIOLOGY and PHYSICS. Taking 'Women's Studies' is the best decision I've made in my academic career so far. As for my health, the MRI results for the left and right ankle show Avascular Necrosis - bone death A.K.A what I have on my shoulders, hips, and knees. The talus (foot bone), below the talus, and next to the talus are pretty fucked up. There is extreme deterioration in the bone. The left ankle is worse. The right, I'm managing without pain. Everyone is telling me to stay positive and optimistic, but I know I won't look good on a wheelchair. I'm certain about getting bone graft surgery on my right hip...but as for the ankles, surgery is uncommon especially when it comes to ankle replacement or even bone graft surgery. I'm in a complicated situation but let's see what happens.

During that week's appointment (11/17/10), Dr. Sinha suggested I get married and have a baby. Apparently your immune system changes after giving birth...he's dealt with other women with similar conditions to mine who gave birth and were fully cured! I don't want to take the risk of getting married or having a baby! Living with a man? Are you out of your mind Dr. Sinha? But then he did say that it might be time for a boyfriend...and I think he's right. So all the fellas out there, I am single and looking. Call me!

This post is dedicated to the good times I've been having, the major events. The first of many is Ruqayyah and Chopra's bad-ass Halloween party which took place on October 28th. It was way beyond bad-ass. If you lived in or around Glenwood, this was the party to be at. I was a a good ol' ladybug, flappin' all the haters away with my wings. The wings were huge! I knocked out a lot of people. But aside from that, the two-bedroom apartment was packed. I was literally up against a wall, swayin' my hands in place dancing to "Like a G6." Alcohol, music, decorations, people in ridiculous (some hot) costumes...then it went out of control. Cops, blood, people sex'ing against apartment walls, drunk fights, and the super's wife yelling at the top of her lungs in the middle of the kitchen with her hair wrapped in a bandana of some sort and pajamas. As horrible as all this sounds, I was sober and all this shit was pretty damn hilarious. The apartment complex was covered in blood. And as the boys were fighting outside of the building, heads were poppin' out of windows as if some serious shit was goin' down. Just imagine: fat women and their heads stickin' out. Hahahaaaaaaa. Ruqayyah ended up losing her phone. The party was cut short, way short. Instead of ending at 4am, we barely made it past 1am. We went to bed scared. All windows and doors locked. And we woke up the next day at around 3pm in the afternoon.

November 6, 2010, of course after Sabbath was over, my Jew Crew and I celebrated Danielle's birthday. Her 19th birthday at a lavish kosher restaurant, Orchidea. I've mentioned Tomer in my other posts, but this is probably the first time I'm mentioning Danielle. These two + (Joseph Gotesman) are my favorite Jews. Though Joseph wasn't at this particular event, we still had such an amazing time. Kosher food is pricy and it took me a while to acquire the "kosher taste", but nonetheless, I enjoy my food kosher. (I should've mentioned this in my intro: one must also experience some culture other than his/her own.) So after the long wait, we finally had a table. All starving and ready to eat just about anything. The roll of bread was first but it was our mishap that each time the waiter came around Tomer would sneak the bread away. All to himself. That fatass. And since we went to a "dairy" restaurant, we all had some sort of cheesy food. No meat. For dessert, we had Tomer's favorite, (I know, it's Danielle's birthday, but he runs the show), chocolate cheesecake. I only had one bite, now that I'm on a diet. Hahahaaaaa.
Friends Forever.
After dinner, we went to Bar 4 in Park Slope. Jammed to some hipster/Park Slopian music and drank some booze. I feel so cool typing this right now. And since I still haven't acquired the alcohol taste, I had a fruity drink. Amaretto sour. This drink is soooooo delicious. After about two glasses, I was grinding on Zary...luckily the hour changed that night and instead of getting home at 3am, I got back at 2am. A night to remember.

Tomer, Danielle and I always have spontaneous outings - whether Tomer is in the mood for cheescake at 1am or French onion soup at 2am. Other times we have kosher sushi at 12am and go for some ice cream. November 11th (because it was after 12am) was one of those spontaneous nights. We intended on having cheese cake but ended up ordering French onion soup. (It was the pregnant woman's fault (Tomer!)!) After some really good soup, we were driving around and parked in front of a sex toy shop. On Kings Highway! In front of Jennifer Convertibles! I know. Never knew Brooklyn had those and especially didn't know it was so close to my house! So I was in the mood to fuck around, not literally though! I wanted to laugh and see what the store had. Tomer was anxious. Danielle was ready - car parked and everything. We went in and it was pitch black. I yelled "Hello?" And a man replied from behind the cash register. Of course I wasn't going to buy anything, but I wanted to look around and poke fun at sex toys. Immature. The man turned out to be of "Desi" descent (Pakistani/Bengali/Indian - something). And right away my heart was beating faster, my body temperature was rising - no I was not in love nor was this man cute. I don't know how others feel about this, but when two people of similar cultural background find themselves at a place they really shouldn't be at, the situation becomes really, really awkward. And so I didn't want to laugh at the hanging dildos or strap-ons, I just wanted to go away from the shame. The man kept his eyes on us as he heard us laugh in the beginning and screamed out "21 and older only." Danielle was looking at sexual birthday cards while Tomer was looking up at the ceiling. I began to feel really claustrophobic and everywhere I looked there was way too much sex. Oh my God. And finally we left and I was able to breathe.

I celebrated Eid on November 16th. For those who are confused, this Eid is the second Eid Muslims celebrate. The first one took place 3 months ago. This one basically comes out of the Quran where Abraham is sacrificing his son, Ishmael - but God is just testing his faith, so instead he sacrifices an animal. We pretty much interpret that and sacrifice goat/lamb/sheep/cow and have a big feast. And on these Muslim holidays, I don't go to school, get money from my parents or any other elders, and wear fancy clothes to run the streets of Brooklyn. Hah! Of course, I eat a shitload of food. And I also hang out with my Bengali friends - I don't have that many as being Bengali means being Dramatic. Most Bengalis who I considered my friend in the past have given me nothing but stress and shit. They're good to keep around for the holidays, of course there are exceptions. This Eid I celebrated with Naz, Tareq, Airen, Juhi, and Muntaha. And while I can't disclose most of the information, it was the most memorable Eid ever. Driving in the rain, lookin' for Red Mango because we were in the mood for frozen yogurt...and that's all I'll say. Oh and I'm sick of eating meat now, might be the only time I feel like becoming a vegetarian.

Muntaha, Airen, Juhi and I. Love you girls!
Another month has passed right by and even though this means I am closer to my right hip bone graft surgery, living each day with laughs and crazy adventures has kept me walking and going places. I'm weak but at the same time, stronger than ever. So for those "Oh, I'm so busy with school and work" people out there, take a break and do something crazy. No one has time these days, seriously not a good excuse. Make time for fun bitchesss.

Friday, November 19, 2010

4th Annual Spit Poetry Slam

I haven't written in a while, I know. For the first time ever, I participated in a poetry 'slam' at Brooklyn College (11/18/10) presented by the Omicron Gamma Chapter of Sigma Lambda Beta International Fraternity, Inc. co-sponsored with the Hispanic Society. First off, all of the participants were amazing. And at a school like Brooklyn College it is hard to realize such talent exists. Musicians, singers (who wrote their own songs, and can actually sing!), poets, rappers...I mean, it was an arrangement of talented individuals. I was inspired, in so much fascination, and just obsessing over every piece presented.

My poem was a short one and of course dealt with Lupus. Not depressing, but quite serious. Usually, I'm informal and sarcastic...but this was different. And also this was my first attempt at writing poetry, Lupus-related. I've written some poetry before but never performed. Another wish off my bucket list can be checked off now.

And also at the end of my performance, the hottest performer of the night (he was hot and his performance was my favorite) came and shook my hand and said, "Your piece almost made me cry and I know it came from the heart." Something around those words...but it touched me and I promised Ruqayyah and Chopra that I would never wash my right hand! Ever!

I'm posting the piece here as a memory and for my readers:

To Appreciate
Hi my name is Shahana Hanif
And I have Lupus.
With a noticeable limp, I walk.
And hips.
Bones all gradually decaying.
The mechanisms that keep a body in function. Mine no longer work.
However, this piece is not about me.
It’s about you.
As I walk to class…breathing in the Fall air,
counting the 1, 2, 3 benches,
I stumble upon a rock.
It tickles the heel of my foot as it clenches…
I feel my right knee buckle…
And my hip tries to juggle
That one struggle.
I pause for a moment to catch my breath.
And I look to my left, and I look to my right as everyone around me does not stare.
Still standing, I realize how fast everyone is walking.
With their very somber face. Trying to win this unexplained race.
That was me one day.
Walkin so fast, runnin’ from place to place, not givin’ a damn about anything.
Face serious and all.
And only two years ago the doctor reminded me I should be thankful that I’m living. “You’re alive, be thankful.”
But I didn’t understand her till now.
Why be thankful when you’re limbs are so weak?
When to go up a flight of stairs, to walk one block, to sit, to stand…is of course all that we take for granted.
Can’t run, can’t jog, can’t jump. But you can. You can.
And as I continue walking, I appreciateI appreciate.

Thursday, October 28, 2010

No One to Talk to

You know what I don't like? Neglect. I also don't like fake people. People who claim to actually hate or dislike a person and pretend to like them with the biggest of smiles. This is our world right now. Full of neglect and fakeness. And I don't like it one bit.

Friday, October 22, 2010

'We're All in this Together'

It's 8 in the morning. I'm never up this early unless I have a reason to be up. So why the fuck am I up?

You know those days when you just have to go the bathroom so fuckin' badly? I'm having one of those days. Those days when your father, who sleeps upstairs, could and should be using the upstairs bathroom, but decides to spend hours in the downstairs bathroom...when I really need to go!!!

I was trying to hold it in as much as I could but it wasn't one of those days where it could be held back...I had to let go. So, I rushed upstairs, and seriously, my mother and youngest sister thought there was an intruder. They know when my father is going up the stairs...but they've forgotten how my footsteps sound because I rarely go.

But anyways, I did my thing. And now I'm good. And no this post isn't about my 15 minutes in the bathroom. I needed an introduction. Don't roll your eyes, it's early.

Thursday, October 21st, I attended Karaoke Night at Brooklyn College organized by the BA/MD Club. I know how to sing, a fact that most of my friends do not know about me. But I never sing alone.

My mother's side is very much talented in singing/theater/drawing, basically the arts as a whole. And I guess my sister and I acquired some of those talents. We both grew up singing in house parties and shit, nothing big because my father was strict. He didn't want us to sing around places and think that we'd be singers in the future. We didn't take classes or get any professional training. We'd memorize songs our own way and sing. Hindi and Bangla songs. In recent years, we'd even harmonize and put in different voice effects (without the machinery).

Sabia (Kumkum), my partner (sister), definitely has the more dominant voice and she really knows how to sing. Like a singer. She is also the well as the actress. And she is good at all of these!

So, I went to karaoke night for fun as all my smarty-pant friends who are in BA/MD were going to be there. When Jefferson Lounge was filled to capacity, all I could really see were Brown people. There might've been two White people. I knew I had to make a tribute and sing a Hindi song. And so I did. All alone. Nervous as hell. Spontaneous. Spontaneous behavior makes life so much more exciting. The spotlight was on me and I sang my heart out. Ruqayyah, Chopra, Jasmine, and Ayesha were my background dancers.

For those who are wondering, I sang "Zara, zara" from the movie Rehna Hai Tere Dil Mein. This is my ultimate favorite song, my comfort song.

I also participated in group-singing. We sang "We're All in this Together" from High School Musical. No, this was not my idea. This was Ruqayyah's idea. Who also thought she was Nicki Minaj and was rapping like no other. Good times.

Nicki Minaj.
Ruqayyah Batts.
Don't Kill Me.

Literally, twins.

So, why am I writing this at 8 in the morning? I don't know, to be honest. But there's a take-home message. If you have a talent, don't hide it. If you want to do something spontaneous, even if it's not spontaneous to someone else, do it.

Yeah, I thought I was going to end this with a Nicki Minaj rap or quote. I can't seem to find one that I understand.

So, I'll end with Frou-Frou, "So let go, jump in, whatcha waiting for? It's alright, 'cause there's beauty in the breakdown."

Thursday, October 21, 2010

Life as it is. October so far.

We grow up with instilled values and traditions.

Well, at least in my household.

All my life, there has been one goal. No, not marriage. Thank God! A shared dream that I was to fulfill. My father's dream of me becoming a doctor. And with the type of person I am, I was on the path of making his dream come true. I'm happy with whatever you place me in, at least that's what I think. I'm not the rebellious type. And for those who know, know that I was on a pre-medicine track pursuing some science and humanties-type major. But this cannot be done. Dramatic, yeah.

The past few weeks of my life have been more than dramatic. I don't remember when I started working-out in the Brooklyn College gym - fabulous gym by the way - but it triggered a series of events. Well, at least I think it triggered what I've been going through. The funny thing is, I only exercised two days. I was working-out with three other girls, one who ended up on crutches/wheelchair due to a severe ankle/foot accident, and the other two just stopped going after me and the other girl were "injured". We know they just got lazy. Just our luck.

I used the machines I was allowed to use: the treadmill, elliptical, and bike. After each session, I felt pretty damn good. I was getting into the zone of working-out, thinking maybe this time it wouldn't be a fail, that I'd actually work-out, eat right, and lose a pound or two. But of course, life came in the way of my work-out session.

My left ankle and right hip began to hurt quite severealy. I don't know which side felt worse. All that was running through my mind was, "No, I cannot be going through this shit again. Every semester something happens." I was literally wobbling from side to side as I couldn't put pressure on either leg. I was definitely concerned, but I know if I were to go to the ER (emergency room), they'd keep me there. But boy was I wrong this time...

I went to the ER on Wednesday, October 6th. And let me tell you, it was a fuckin' fail. Not only did I wait for about 6 hours just to be seen, when I was actually seen, I was seen for about 2.5 seconds! This is how the system works. They make you wait for hours and hours and see you for a millisecond. That's the ratio. I explained my situation to the ER doctor, and at first I thought, okay, he might give me some pain medications or something. No, that didn't happen. After looking at the multiple X-Rays, he told me, "Yeah, so there seems to be some inflammation but nothing to worry about really. Take some rest and keep your feet elevated in bed." Bullshit. The nurse printed out the discharge papers and I was out the door. Literally, wobbling and all, and they saw me walking out like that! In the meantime though, the doctor was explaining to the nurse how crowded the ER was that day and how he had missed his scheduled lunch. Really? Are you fucking kidding me? The future of medicine really scares me because I don't think there will be or there are doctors who are actually passionate about taking care of the sick. Everyone wants to be a doctor these days. It's overrated and highly commercialized. And no one truly cares. No one. Maybe one.

It's the truth. Of the 6 doctors I see (nephrologist, orthopedic (upper extremities), orthopedic (lower extremities), rheumatologist, endocrinologist, and general pedicatrician), only one is truly committed to me and the field of his study. I'm not going to say who because you're going to find out.

After coming home that day, I was upset and in a lot of pain. I didn't go to school that Thursday because I really couldn't walk, every limb was hurting. Luckily, Friday the 8th, I had an appointment with my rheumatologist. This was another fail. It seemed as if she tried to rush me out of her office. After explaining how I felt, crying a little to add some drama, I came home limping twice as bad. No changes to medications, no further advice. This is when I really started to lose hope. When doctors have hope, they give me hope. But if they act shady and just try to make things seem fine when they're really not, I lose hope. And this is exactly what began to happen.

I didn't mention this earlier but I started a 12-week acupuncture treatment in the Swedish Institute. So far, the acupuncture hasn't changed anything dramatically or even slightly. I go every Friday at 7 pm and the treatment lasts for about an hour. The acupuncturist checks my pulse and the color and texture of my tongue - these two give information about metabolism, digestion, pain, and just a shitload of Chinese medicinal things. Umm, so, yeah, I haven't seen much change yet. After the first treatment I felt a boost of energy and completely relaxed. I was so happy and thought to myself, "Finally, something that might work." But the treatments that came afterwards made me feel worse. The acupuncturists were trying to figure out why their treatment failed. They reasoned, because I got 3 flu shots during one Friday morning, it switched and rotated the bodily "energies." Yeah, I don't understand what that means and neither do you, so it's okay.

Still, Chinese medicine fascinates me. The acupuncturist, a student at the Swedish Institute, examined my medical history and came up with a treatment. And for those who know and don't know, acupuncture is done with needles - tiny needles that are placed in different points (areas of the body). Sometimes I feel the prick, sometimes I don't. And if I really go in-depth about this, you'll be confused and just stop reading. The focus of my treatment is the lower extremities (feet, legs, hips). So that means most of the needles are on my legs, right and left hip and feet.

I started acupuncture thinking some of my pains and aches would be healed, as I've heard many positive stories from others. Of course, I'm the one exception who comes out with worse symptoms.

So anyways, after my treatment on the 8th, I had the worst Saturday of my life. I literally did not brush my teeth until 7 pm. I couldn't get up from bed to walk over to the bathroom and when I tried, I couldn't stand still. Though doctors are supposed to be on-call 24/7, weekends are a rough time to reach them. But one doctor was available for me...Dr. Sinha. My orthopedic (lower extremities) surgeon was there for me. I have this man's cell phone number, e-mail address, just about everything. And I know some doctors give out their information but when do they actually reply or answer your texts and e-mails? Exactly. So I texted Dr. Sinha right away, he called me up, and I was on the path of some type of relief.

We had a quick conversation on the phone before he prescribed me Celebrex and Valium (some pain and inflammatory medicines, Valium is strong and addictive). He was very honest in telling me that I was the biggest puzzle in his medical career. He has so many awards in his field of research and what-not but he was disappointed that there isn't a clear-cut solution to my illness and random flare-ups. He didn't understand why I was going through what I was going through. He assured me that he would do the required research and take everything step-by-step. And over and over he made me repeat, "I will not give up." And really, I will never give up.

I visited him for an appointment on the 13th (which I had to fight to get because my initial appointment was scheduled for the 18th) - and I cried hearing some of the procedures I needed to get in the near future. More X-Rays of the ankles proved that nothing was wrong with the bone, but it could be a case of Avascular Necrosis (what I have on my hips/shoulders/knees; bone decay and loss of blood circulation). And if that's the case, I'm seriously fucked. The plan as of now is to get bone graft surgery on the right knee and right hip - making a hole in the decayed area will allow new bone to hopefully grow, but eventually I'll need to get the areas completely replaced like my left hip. I'm not concered. But I'm scared. Scared of recovery time.The estimated recovery time is 6 weeks. Two surgeries = 12 weeks. Three months. Three months of not being able to put weight or pressure on that side and three months on fuckin' crutches. I don't know what the fuck to do.

After this appointment, I knew I had to make some changes, some major changes. The work-load in school was really aggravating my symptoms of Lupus and I knew I had to do something about it. I thought to myself about withdrawing from all my classes. I thought about maybe just pushing through like the other semesters. So many goddamn thoughts were in my goddamn mind, I was going to explode.

I texted my best friends right away (Ruqayyah, Chopra, Tomer). They all called me right away. And these people are legit individuals who are in the pre-med track taking some crazy-ass classes like organic chemistry and analytic chemistry; I know, crazy shit. But they never fail at being a true friend and there for me when I need them the most. Everyone is good at saying, "I will always be there for you." But in reality, how many people have seriously been there for you? Tomer showed up in front of my doorsteps at 12 am and stayed till about 2:30 am. We were goofing mostly, but were also serious for about 3 seconds. Thursday night of the same week, Chopra and Ruqayyah were over until about 5 am. I don't know how I'd be without these people and so many others. I'm the luckiest bitch on Earth, and if I take you for granted, slap me in the face.

For once I think I made a logical, well-thought-out decision. I dropped my science courses (Physics and Biology). A load of unnecessary stress is completely gone. I didn't withdraw from my Women's Studies course because there's no added stress and it meets only twice a week and I need some shit to keep me sane. And I'm a feminist, and I'm proud.

I started this post talking about values and culture. From birth, literally, one career goal was instilled in my brain: becoming a doctor. And as I began to understand the world during my high school years, I realized hmmm, I have other interests. But I kept them aside (broadcasting/journalism/something in the writing field). I knew I could do whatever I put my brains in. While I am passionate about becoming a doctor in the field of Lupus/Rheumatoid Arthritis/Bones, I realize it is not something my body can tolerate. With my condition, medicine is not the path for me. And as much as my friends keep saying, "If you have your heart in it, you can do whatever you want." But I know how much my body can tolerate. As it cannot tolerate much. I take naps everyday and I'm sure in med-school that's not what students do. It's sad how depressing this sounds right now. But it's a fact that I needed to realize before it was too late. Life throws you shit, and it threw me a lot of garbage, but I have to act accordingly.

And really right now, school doesn't even matter to me. The past few days I've been enjoying like no other. The world is beautiful when you take a second to breathe and look at the surroundings.

I want to live, God. I want to live to walk on Your streets. Life as it is...

Monday, September 27, 2010

Lupus Photoshoot in 2009.

These pictures were taken during the summer of 2009 by my cousin Rezwan Noor. The location: my backyard. These images capture the changes I went through physically. I wanted my scars, otherwise known as striae (similar to stretch marks, but not stretch marks) to show. Striae is a side effect from Prednisone, the steroid medications I take. I have striae on my arms, stomach, legs, feets, and lower back. You'll rarely see me in short sleeves. The piece on my head in the first three pictures is a wig. One of my favorites! You can also see a clear "moon face". I was very swollen at the time. The last three pictures show my real hair while it was growing. I was too shy to go out like that because I've always had long hair prior to losing almost everything.

I took these pictures not only to remember what I went through, but also to show me how much I've recovered since 2008. 

Recovery is good.

Visible striae on my arms.

You can see that my right foot is swollen.

Humped back. Abnormal double chin.

Sunday, September 26, 2010

Part III.

The main reason why I was in the hospital for so long was the fact that my blood pressure was unstable. My nephrologist did not want me to go out and collapse or something. So, there was a valid reason for my elongated stay. It wasn't boring at all, and recalling some of the memories are making me laugh. During that second week, I was still hopeful about returning to school. Ruqayyah collected all the notes for every class and even demostrated First Aid/CPR instructions in the hospital (we were both taking this class). The "hospital teacher" would come to my room every day wanting to teach me. I told her I was taking AP classes and everything was going to be taken care of. She still wouldn't leave me alone. And that's why whenever I knew she was coming in, I would act like I was sleeping. Hahahaha. Good times fooling the teacher.

In a pediatric facility, patients are taken care of with so much love, almost too much love. There was random guitar players (one guy sang for me, and I just couldn't keep a straight face), massage therapists, people who gave gifts (I brought home a lot of shit), and arts and crafts people. I was probably the oldest patient in the pediatric floor at the time, but I enjoyed all the amenities. My favorite day during my stay was when I made a plaque for my mother. Her birthday was on September 16 and early that day I called my father to bring a cake during the night. At the time I was switched over to the regular floor which had a game, computer, and art rooms. I printed out pictures of my mother and I from Facebook and used beads and stickers and markers to make a gift. And that same day I was switched back to the ICU room because I wasn't making enough urine! Thank God I was able to finish the gift! We celebrated and shared some tears.

My blood pressure was normal whenever my best friends came to visit me. I was never lost in the conversations because I was always updated on the new gossip and daily drama. They would circle around my bed and just keep me smiling until visiting hours were over. I also experienced times when my blood pressure was high due to unsupportive people. My neighborhood Bangladesh'ians came to see me every day. About 10-15 new visitors visitors every day. For those who don't know, I live in a close-knit Bangladeshi neighborhood. My father is a very well-known man here and that is why a shit load of people bothered to see me. Some people were cool. They would say a prayer or dua out load and touch my forehead. Others would make nonsense remarks and say that I needed to lose weight in order to get better. Or that the doctors were giving me wrong treatments and I should research my symptoms on the computer. I was annoyed and tried not to hear or listen to these unsmart comments.

I underwent chemotherapy twice during my stay. I vomited a few times and felt a metallic taste down my throat. I didn't notice symptoms of hair loss at first. But when I did, it was horrible. I lost all my hair. It came out when I combed. A chunk of it would appear on my pillow. It would fill the bucket when I washed my hair. I couldn't run my hands through my head. You just have to imagine losing chunks of hair. It was loose. I didn't have to pull. But I never allowed myself to get fully bald. After coming out of the hospital I went to the hairdresser to shape the few strands of hair that was left. I didn't rock the 'few-hair-strand-look' because it was creepy. I wore wigs and became obsessed with wigs. Short, long, layered, straight, curly. I have everything. And two years later, I have a full head of my own hair, and it's thicker than what I've ever had. When God gives, God gives graciously.

I also underwent a blood transfusion during my stay. It was funny because I remembered the few times I donated blood. 'One pint saves three lives,' the famous line that is always advertised. Someone had just saved my life. It's fucking amazing, like what else can I say? Donate, now!

After being discharged from the hospital, I felt freedom. Leaving the hospital doors and feeling that first breeze of fresh air was scary. I couldn't recognize it. I went down the first flight of stairs feeling anxious. I climbed to sit inside the car and kept thinking I was going to fall. Everything seemed new and unfamiliar. Sleeping in my own bed that first night was peace. No noise. Finally, home-cooked food, even though I was limited to 6 cups of liquid each day and no salted foods. My diet is normal now.

The recovery process was tough because I was on at least 15 medications. Some of the side effects of these medications were more servere than the symptoms of Lupus. I already had joint problems, but medications such as the steroids worsened my condition. Prednisone is my enemy. Low doses don't affect much, but I was on doses higher than 60 mg. The Prednisone was responsible for the "Moon Face" I mentioned in the previous post: swelling around the face and a very apparent double chin, bolging eyes, and unequal distribution of fat. My legs became very thin as well as my arms while I had a humped back and unusually large tummy. Both of my feet were swollen. I couldn't fit into any shoes except for my black Converse sneakers. I wore buy diabetic socks.  

I was so weak in the bones. It was hard for me to bathe myself. I never went downstairs to eat with my family. Each meal was brought upstairs. I only went out for appointments. I was too embarrassed to leave my house. I didn't do much at home. I utilized Facebook to share my story, watched some TV, and completed my college applications. But before I knew it, I ended up in the hospital again because of too much potassium in my system. My stay lasted for two weeks.

When I was well and back home, I knew I wasn't returning to school that semester because I wasn't well enough. I was unable to walk or go up the stairs. And I was always falling asleep. For the remainder of the semester, I was homeschooled. I had finished the requirements to graduate, so I took a random english and history class just to stay busy. Homeschooling was interesting. My teacher was on Weight Watchers and she would update me on her weightloss. She was a good lady...

I returned to Kearney during the Spring semester. I returned to my safe zone. And from then on the story continues...

This piece is segmented into parts as if there is an ending. But there isn't an ending because I live Lupus everyday. And for me, aside the pains, that means the countless laughs, eating good food, being a college student, and hanging out with friends and family. It's a good balance. And when you realize, you're life is actually no different than mine. 

Part II.

As I write and recall the events that took place two years ago, I realize that I'm very weak. However, to me, writing is the same as crying or screaming out loud without any boundaries. My emotions and memories are released. And after a few paragraphs, I feel relaxed. Anyone who hears my story, aside from being inspired, is shocked by the fact that I haven't suffered from depression. I'm significantly ill and I won't deny it. But I'm a 'healthy' sick person. Support from family, friends, professors, college advisors, and Facebook acquaintances who read my blog keep me strong and smiling.

In my previous post, I ended with an introductory synopsis of my diagnosis without talking about any of the juicy stuff. I soon learned the name of the diagnosis that fit the symptoms of losing proteins and hypertension (high blood pressure): Nephrotic Syndrome or inflammation of the kidney. But the doctors were concerned about WHY I was losing proteins, swollen, and suffering from hypertension. I was in Coney Island Hospital for one week, without a real diagnosis. Blood-work after blood-work, but no results. On the 7th day, a specialist from Maimonides Hospital analyzed my symptoms and blood-tests. Dr. Laura Barinstein had answers.

On the 7th day, (how ironic), Dr. Barinstein came into the room and took a seat. In her hands were articles and a magazine titled Lupus _____. I was telling myself that the Lupus magazine wasn't for me. I just saw the word Lupus and was trying to recollect where I had heard about Lupus...and I remembered Mercedes from America's Next Top Model cycle 2. Dr. Barinstein introduced herself as a Pediatric Rheumatologist from Maimonides. Rheumatologists focus on treating diseases affecting the joints: hence, Lupus. She was very casual and told me, "Shahana, you have Lupus, and we're going to take care of you. Here are some information you should read up on." Of course this is not word for word, but it was a pretty quick conversation. I took the booklets and articles and began to read.

Lupus is an autoimmune disease. My immune system is working against me attacking both good and bad cells. This makes me more prone to catching shit from others who are sick. Joint and muscle pains are the symptoms I feel daily. And I'm constantly swollen. Some days are worse than others. Lupus hurts, I'm not going to lie. But I always remember, God gives us what we can handle. And I must say, the Big Guy up there made me strong as hell, even though physically, if you bump into me I'll bruise! I have the most severe type of lupus, Systematic Lupus, in which an entire organ is damaged. In my case, the kidneys. So basically, what I just wrote is my understanding right now in simple words. Back in 2008 when I read all these "autoimmune and chronic illness" crap, I thought to myself, "Great, I'm gonna fuckin die and I'm 17 and still a virgin!" And yes, the disease is chronic meaning I'll have it for life with flares (times when I'm sick as hell or in significant pain) and periods of remission where I'm not sick at all. I'm not in remission. I am stable, but my joints are always a reminder that Lupus is partyin' it up.

There was a booklet on supporting a person with lupus. I remember reading how I was going to undergo many physical changes and would become weaker, but more importantly ugly. It didn't say that, but come on, with weight gain, weak bones, and a moon face which I'm going to discuss later, how the hell can you look pretty? I'd have to pace myself and say no to endless nights out with friends. I'd always feel tired and sleepy. Oh, there was a section on how I should sit with my friends and discuss what Lupus is all about. It went on about how some people would not be accepting of my condition or stray away from me. And yeah, you get the jist of it...

Accumulating this new information  definitely made me feel relief, but at the same time, my entire life had stopped. I cried, I cried a lot, to myself mostly because if I cried in front of others, it would always make them cry, especially my mother. I kept asking God, "Why the fuck is this happening to me? What did I ever do?" I'm good at putting up a strong front, but in all honesty, I'm not that strong. Once I think about Lupus, there's nothing to smile at, nor is there anything to feel strong about. I should find joy and happiness in the fact that I'm a crippled? It's easy for the world outside to tell me I'm a strong person. For me to tell myself that I'm strong, doesn't make much sense.

After entering the Intensive Care Unit at Maimonides, I was fuckin scared. I was in a jail. One chair, a window to look out at random buildings and ceilings, a sink that was so far from me, and my commode (my own toilet seat). I was locked up. Machines and wires were attached to my body monitoring my heart rate, pulse, blood pressure, and other nonsense. Moving an inch or two would make the machines yell the fuck outta me. It was annoying to hear the beeping noises all the time. I couldn't walk out because of this and was confined to my bed 24/7.

I lived in this ICU room for a month or so, but it felt like 10 years. Everyday around the hours between 5-7 am, I would get blood drawn and do a weigh-in to see if the water pill (supposed to get rid of the excess water in my body) was working. I was always cranky when doctors would try to get blood from me. What I've learned from the experience is that doctors are not good at drawing blood. This is a fact. Especially the resident doctors. Fucking poking me like it was their job. And at desperate times, they would draw blood from my artery, which is probably the most painful place to get blood drawn. I had bruises everywhere because of the constant failure to find a vein. My IV line would never cooperate and would have to be changed almost every other day. I've had IV lines placed on both arms, hands, and even feet! This one crazyass doctor told me casually, "If anything, we'll just put an IV line on your neck." And just try to visualize this statement as if nothing's wrong with it. Yeah, that's how the doctor spoke. At that instant, I called my mother crying like a baby, telling her that this one crazy doctor was going to put an IV on my neck! Thank God it never happened.

Living conditions were horrible. I was too scared to take a shit the first few days in the ICU. The curtains were my only means of privacy. And for those curtains to be closed, I had to call the nurse. Like the entire fuckin floor knew when I was taking a shit! I didn't take a real shower until my last week at the hospital. My mother would just wash me while I sat on my bed. And I remember when I actually used the floor bathroom, a nurse aide was standing outside like a guard. I told her I would be okay but instead she said, "You are not well, okay." And just stood there.

Over and over I was reminded that I was not well. Why was it that others knew how I was, and I didn't?

Thursday, August 12, 2010

It's a Lupus Story. Part I.

I'm aware of the fact that a lot of my readers don't know what Lupus is, what it entails, and how life-changing it is. Lupus is an illness that isn't advertised or given much attention to. Regardless, I feel that everyone is entitled to educate and be educated. In this segment of my blog, I'm going to focus on Lupus and my diagnosis - don't worry, I won't bombard you with medical terms.

I was diagnosed with SLE - Systematic Lupus Erythematosus in September of 2008. I was a senior in high school and it was my first week of classes when I noticed a toothache. My gums were swollen and brushing my teeth was a 'bloody' scene. I went to the dentist and took care of that shit without delay. No one wants stank teeth. Especially not when you have a smile like mine, haha. I also noticed a lot of physical pain - high fevers, headaches, and body aches. These headaches were severe. I'd be knocked out for the entire day. Medicine, sleep, massage. Nothing helped. But the pains were a good excuse to get my youngest sister to massage me. Alongside the headaches and fevers, I had no apetite. And knowing me this was definitely a sign that something was wrong because I love food and usually never say 'no' to food. However, I brushed it off and didn't mention anything to my parents. Though I didn't mention anything, my mother knew something was wrong and asked if I was depressed. I don't know? That definitely was not the case, so I just stayed away from my parents. Ah, 17 years old and the desire to be left alone. Classic.

I continued going to classes and noticed a lot of swelling on my body. Unusual swelling. I mean I've never been a stick, but I was never a fatass either. Day by day it was becoming harder for me to walk and even hold a pen while taking notes. I remember the first or second class of AP Psychology, I couldn't hold my pen. My writing looked like scribbles. Walking from class to class was becoming a journey. Luckily, Ruqayyah and I were taking the same classes and she would carry my books because I was weak in the shoulders and was unable to put weight on my arms.

During senior class picture, which took place during that first week, the entire class of '09 was seated outside of the school. I was on the ground, and oh my God, I don't know what I felt, but I felt that I would faint any second. I couldn't hold my body straight and kept swaying and bumping into the other girls sitting next to me posing for the pictures. I was waiting for the friggin' photographer to hurry the fuck up, but he was taking his sweet ass time. When the photoshoot was over, I called Ruqayyah over to help me get up. As we were walking up the stairs, I struggled and told her, "I didn't know how difficult it was to be overweight until now. I don't want to be overweight." My problem was far worse than being overweight. 

It wasn't until I noticed my right foot - it grew to be the size of a football somehow. I mean, how often do we analyze our feet? In gym class, we were assigned to run 8 laps, which I didn't want to do but also knew it was impossible to accomplish with this foot. I spoke to the gym teacher and she suggested I go to the nurse. Of course the day I needed the nurse, she wasn't in her office. I went back to the gym and the gym teacher told me to put an icepack over the swelling. I tried her method at home, but noticed my foot mysteriously getting larger. My ankles and the top part of my foot were swollen. I tried pressing into my foot realizing that maybe it was water weight. My mother noticed me dabbing ice on my foot and asked me what the heck I was doing and I explained and showed her my foot. And the next day we were in the emergency room.

If I didn't have a patient mother, I don't know where or how I would be. The wait in the emergency room was unbearable. It was Ramadan and my mother and I were fasting. I was getting hungry and impatient. I was so close to leaving the hospital because I had shit to do: homework. It sounds lame when I look back now. It was a relief when I was finally called and  after checking my vitals, the nurse knew something was wrong. My blood pressure was high, unbelievably high. I was seen by the ER doctor immediately. First, they checked my weight. Though I didn't look it (I hope) I weighed 215 pounds! The urine sample also showed something I had never heard of: large amount of proteins were leaking out through my urine, which indicated I had some sort of kidney disease. And because my kidneys were not functioning, my blood pressure was high.

When the doctors came with all this kidney and protein talk, my mother started crying. It was a dramatic scene. Seeing her cry, I couldn't help myself. I didn't know what was going to happen to me. Though I didn't know what was going on, I didn't think the situation was serious at the time. I thought I would stay at the hospital until my blood pressure was controlled and be able to return to school.

This didn't happen, at least not for another 5 months...

Wednesday, August 11, 2010

Renewed Life: Ramadan

I've been a total lazy ass. I sit online for hours and do absolutely nothing. I've become so consumed with Facebook. There's an addictive factor that is so hard to control. I could easily open up this site on another tab and be somewhat productive, but shit, my entire focus is in Facebook. In reality, I am a pretty busy person - to make plans with me, I'd have to check my schedule. You know how it is. Aside from all this junk, I haven't been inspired or motivated to write. You might be wondering what inspired me to write tonight. I am celebrating my two years with Lupus. This disease has given me such new life to celebrate.

Everyone goes through shit. We all endure different levels of pain in different stages of our life. If we didn't, life would definitely be easier to live, but in all optimism, it's good that we suffer. Suffering makes humans human.

Today is the first day of Ramadan. A month devoted to fasting, I'm hoping to make the best of it. Not just in the matters of losing some pounds perhaps, but finding inner peace, patience, and purity. When I was diagnosed with Lupus, also during the time of Ramadan, everyone was fasting and praying. I can't even describe the abundance of people that came to pray by my side. It was such a holy time that I spent in the ICU room. But I didn't realize then and maybe that's why I was in so much distress during my stay. I lost most of my faith in Allah because Lupus was not what I wanted. However, I'm a changed human being, as dramatic as that sounds. I realize the strength of prayers and the strength of Allah. The past two years, with all the ups and downs, have been my favorite two years of life so far.

I know I am not the most religious person ever, but when I find faith or at least an excuse to become spiritual, I feel good inside. Hopefully some day, religion will not be a timely excuse. So, my Muslim and non-Muslim brothers and sisters, rejoice in this month of renewal.

Monday, June 28, 2010

Officially One Month With My Baby

I honestly love to write, as if it's not obvious through my writing. But I intentionally try not to follow any taught methods of writing - I don't want this to be conventional at all. I want my readers to realize that not only do I write for myself, to let shit out, but I write for my readers - I don't have/know friends with a chronic illness like mine. I used to know a young girl with cancer, but I don't know how she lived her days with cancer, what her family went through, or how her friends reacted (she passed away). Reading about strangers with illnesses can be touching and emotional, but reading about someone you know and see is a totally different experience. I know my readers enjoy my posts and anticipate new ones because they want to know not just about me, but about this illness that has taken so much away from my life but at the same time allowed me take greater initiative in life. I might not be 'close' to all my readers but I hope you take away the lessons embedded in each post and understand a piece of my world. We all suffer, and I must say, writing about suffering gives me freedom. And I know as a reader, I like reading about suffering, of course I get emotional and shit, but nothing compares to pain-worthy words.

Getting to the matter at hand, my baby, my new left hip, is officially one month old. I know, I'm getting attached, though it's attached to me. Literally. Haha. But my days are for the most part painless - I almost forgot how it feels to be without pain. And even while walking with Jimenez (my physical therapist), I had the tendency to limp because I was so used to limping. But after a while, after showing me how to walk right, I was getting the hang of walking. It feels abnormal to say I'm learning how to walk, a skill I conquered at age 1 (from my mother's account). I'm happy to say that I'm walking hands-free - no cane, crutch, or walker. To be honest, I'm overwhelmed with happiness. I feel so good to stand for more than 5 minutes and walk around without the urgency to sit right away. I love to walk, what else can I say. Being able to walk in normal motion is freedom.

My staples were removed on June 21st and Dr. Sinha (the best surgeon/humane/selfless doctor I've ever met) evaluated my left hip. The X-Rays of the hip looked beautiful - I'm pretty sure if you saw that new hip, you'd say the same. It was gorgeous - right in place, precisely measured. I was speechless. However, I also had X-Rays of my bad right knee, and the images weren't pretty at all. The cartilage/bone tissue of the knee is shattered, it doesn't look normal at all. Dr. Sinha wanted to fix the knee right away - not a knee replacement - but a simpler procedure that would require him to drill 4 corners of the bone to allow blood to circulate within the area. Sounds simple and clean, but...recovery is 6 weeks and for those 6 weeks I wouldn't be able to put any pressure on my right knee - I'd have to get shit done with crutches. He had a date set and everything, but I just need time to think about whether or not I'm ready for another procedure. Getting a procedure done is an easy task, but recovering and not being able to move around freely is just a burden. And I'm being honest. Even though I'm walking much better, I always need assistance with everything I do. Besides, my right knee is still 'okay' - I don't feel hardcore pain. It's arthritic - stiff and swollen - hard to bend and stuff. But I rarely bend around, I'm thinking I'll continue with this bad knee until life gets rough. And if I decide to get this procedure done, I know life will dramatically change. But then I have my shoulders and right hip. I still have a constant worry about these pains I have and I know are coming...everyone tells me to stay positive, but this is something I know I will have to face no matter how positive my attitude is.

I had an appointment with my rheumatologist on June 25th and I courageously asked her if I could stop taking Prednisone (the steroid medication that has played a huge role in the Avascular Necrosis - bone disease - don't get it confused with Lupus). She looked over at me and said, "You know Shahana, Prednisone is not the only enemy in all your bone problems." And she continued by remembering how I first came into the hospital in 2008 with complete kidney failure and higher than imaginable blood pressure - Lupus wasn't so visible - it was her decision to save my kidneys and stabilize my blood pressure before I died with a stroke. High doses of steroids were necessary to save my life and because it took so long to stabilize my blood pressure, I was prone to the hideous side effects of steroids - Avascular Necrosis. Lupus itself had a role in weakening my joints...but this is just a preview of what's to come in the next few posts. I want my readers to know about Lupus - and I will write about it in my own words with medical lingo in a simplified version. I'm at 12.5 mg of Prednisone - I've been on 60 and higher.

All the home care services (nurse, nurse aid, physical therapist) is complete. No one shows up anymore. Thank God! I start outpatient physical therapy soon for the next 8 weeks. Tomorrow to be exact at 11 AM in AquaHealth Physical Therapy on Ocean Avenue. I had trouble finding an outpatient facility that accepts my health insurance. I directly called my insurance company and got their representatives to hook me up. I'm excited - excited to once again ride on a train, bus, walk to Target with my Brooklyn College friends - and just do random shit. I just want to walk to random places and leave a mark: Shahana's LEFT HIP WAS HERE!

That is all for now...and my readers, enjoy walking! 

Thursday, June 17, 2010

The Other Stuff After Surgery

In my previous post I only spoke generally about my hip and stay at the hospital. I'll go a little more in-depth in this post. Of the 8 days I was in the hospital, I had a catheter (a tube allowing me to urinate without using a bed commode or a bedside commode) inside me. It was actually very weird. The first 5 days, I had no bowel movement and would only urinate - peeing while a catheter is inside is the most awkward feeling. I always had the urge to urinate - even when I wasn't urinating. When it was time to take the catheter out, I was anxious, because I didn't know what the hell would come out of my urethra. The nurse just did her thing and in one shot pulled out a snake-like tube. It was rather disgusting - the thought of it.

Because I was still in bedrest and unable to use a bedside commode, one that was right next to my bed but would have to make me walk to it, I was given a bed commode, one that went right underneath my ass while in a sleeping position. After the catheter was out, my first few attempts at trying to pee was very unsuccessful. I was bloated and knew I had to pee but nothing was coming out because none of us pee while laying down (hopefully not)! So, after complaining to the nurse, another catheter had to be placed inside. The first time around, I didn't see the catheter being placed in me. But the second time around, I had my legs spread out, with the world seeing (nurse and nurse-aid), and the rubber-tube just slid right into the urethra. The nurse rubbed my belly and urine was flowing out. Damn, I felt so much better. You can't even imagine. Not being able to urinate freely is deathly. I rather be dead.

The next day, however, the catheter had to be taken out because with a tube inside, I was more prone to infections. The nurse took it out and I was sad because I knew I would have a hard time peeing. But I actually didn't. Somehow, I don't know how, after the bed commode was placed underneath, I just prayed, adjusted the bed so I was in a sitting position, and damn, it was a good flow.

But the next challenge was to make bowel movement. It was impossible to take a shit while on the bed. I just couldn't. But I was constipated. And with all my medications, I was on stool softeners that weren't so helpful. By the 6th day, when I was kind of up and walking with a walker, the nurse agreed to bring in a bedside commode. And on that 6th day, I legit took I don't know how many hours, but the curtains on my side of the room was shut and I let the nurse know that today would be the day. The day I take a good shit. This may be funny, but the reality of it is that I was in a lot of pain. Unbearable pain. And for those who have ever been constipated, you know what I'm talking about and recall those harsh memories of when you just couldn't - just couldn't let it out.

While all of this was going on, I managed to start physical therapy. I looked forward to physical therapy because I knew I would be able to get up, sit, stand, walk for a bit, and regain some of what I had lost. To walk, stand, sit, all these little activities, we take for granted, are so important in our lives because once you lose the ability to do one of these, life will change forever. I remember not being able to sit properly in a chair before the surgery or stand for more than 2 minutes at a time or walk because I'd always be in pain. And I always told/tell my friends that without our legs, we're not human. Without any part of our body, we're not human.

I started physical therapy at the hospital and was supposed to continue at a rehab facility. Unfortunately, the plan did not work out with my health insurance and my doctor decided I should stay home for PT (physical therapy). My physical therapist, a Filipino man, is quite a character. He's very active and always happy. I just love it when he comes. We do simple leg exercises to strengthen the muscles on the left leg. I started off by doing leg exercises on the bed to walking down the hallway to going outside and up the stairs of my basement. The day I went out, which was after 14 legitimate days, I was just thankful for life. I saw the world once again and it was an amazing feeling. I love being outside. The weather was fresh too. In previous posts I mentioned not being bale to sleep in my own bedroom, well, two days ago, I went up the stairs in my house up to my bedroom, which I hadn't seen in a months. Wow. I can't even descrive how I felt being upstairs. I went from being on a walker to two crutches to one crutch. By next week I'll be using a cane. This is called a quick recovery. I don't want to jinx it.

I also have a nurse that comes in every morning to take my vitals and give me a blood thinner injection to prevent blood clots. I actually hate it when she comes because it's usually mad early and I like my sleep. I'm usually cranky as hell when she's checking my blood pressure and shit.

After the nurse, the nurse aid comes to help me bathe, clean my room, and help me with my exercises. Gail is from Guyana and she is so selfless. My mother is always feeding her even though she's not supposed to be eating or drinking during duty. I'm just thankful to God that all these people I'm meeting and continue to meet are good human beings. It shows God is with me in every step.

I have an appointment with my surgeon on the 21st of June - upcoming Monday. I'm actually very excited to see him because he's going to remove my staples. I feel legit with staples up the side of my thigh. It's like a zipper. And I love showing it off to people because I'm just cool like that and because most of my friends are future doctors, they are just amazed every time they see the staples.

Though I don't do much during the week, my days seem to be occupied well. My best friends accompany me and we just have good ass times laughing and fooling around.

I just hope this post makes my readers take time to reflect upon their lives and think about the body - without one part, we're not the same.

Wednesday, June 16, 2010

Left Total Hip Replacement: Done.

It is now June 12th and I'm writing with my new hip. Everyone keeps asking me how I feel and whatnot, and honestly, I don't feel that I have a ceramic head and a plastic body inside. Amazing, isn't it? There is a dull pain, a feeling of heaviness and tightness when I begin to walk, almost like I'm dragging something, but what I used to feel before is not comparable. I suffered a lot and don't know how I actually survived more than 8 months of hip pain and almost 2 years of chronic joint pain (which is still with me). Though I suffered, I think about what my mother always tells me: God doesn't give us more than we can handle. God knows I can handle this shit, but no one likes to suffer. No one likes pain.

The surgery took place on June 1st in Mount Sinai Hospital of Queens. The night before, I got my nails and hair done, because of course, I had to look good going into surgery. The day of, I awoke at 4 am and arrived at the hospital by 6:30 am. By 9 am I was inside the operating room and on so much anesthesia, I don't recall anything after that. The procedure was complete by 12 pm. I felt a relief coming into the recovery room but it wasn't until much later in the evening when I received some bad news. After taking X-Rays of the new hip, the surgeon noticed there was a trial hip piece that was left behind. After sharing this news with me, I was in shock. I started crying, scream-crying. I couldn't understand why they would do such a thing, or why it would happen to me after going through so much - I was questioning everything and everyone. My parents quickly drove over to the hospital to sign an extra consent form for me to go back into the operating room to have the piece taken out. This is when my strength broke. I was so confident going into sugery, never did I imagine coming out frustrated. Nonetheless, the piece was taken out and the second time around, the replacement was a success.

I was in the hospital for 8 days - I was pretty much an Amish living in room 401 bed two. The room was tiny as fuck - literally no place to move around. I never turned on the TV. Never used the room phone. I was legit just there, sleeping and being a lazy ass. But doctors told me it was okay because apparently a hip replacement is a major surgery. Anyways, my days were consistently exciting because of all the people who came to visit - my friends and family. I would name names but it's almost impossible to do that. My room was a party room. Literally. I remember my first roommate who would always complain that there was 80 people on my side of the room. Yeah right. And she would complain to MY doctors. One of the hot doctors would come to me and say, "I hope you guys are able to resolve this issue among yourselves." My dad always said the other patient was jealous. She definitely was. I would overhear her conversations (of course she was Bengali). She had 6 children and I don't think any of them ever came to see her - she was just bitter all the time.

Anyways, so I had the worst apetite, as in no apetite, during my stay at the hospital. My relatives would bring food and I wouldn't eat - I'm missing the food now. But I remember the one night I had a craving for the crispy chicken burger from McDonald's. It was amazing.

I have a new hip, something that I never imagined I would need, but I pray that this hip will give me a new life. I'ved limped enough.

Saturday, May 29, 2010

Hips Don't Lie, Literally

The past two days have not been well. The day of the 27th, I couldn't get off the bed. Both my hips were killing me. I couldn't walk over to use the bathroom - the bathroom is a few steps away from my room. I no longer sleep in my bedroom - I sleep dowstairs in my parent's bedroom. My legs are no longer mobile. But I had to get my ass up from bed because I had an appointment at Mount Sinai for 3 MRIs (both knees and right right hip) and 1 CT Scan (right hip). The procedures took forever because there were so many patients. You realize how many ill or sick people there are once you enter a hospital. From the outside, it always seems that everyone is living a good life. But it's not true at all. We all suffer. We all suffer pains in different ways. You can never understand my pain and I can never understand your pain. That's how God set it up.

The CT took 5 minutes. The MRIs, each about 20 minutes long, took forever because there were so many patients ahead of me. One lady was so scared to get her MRI done, she was crying and screaming. While I could relate to her pain, she was really getting on my nerves because I wanted to go home. And that day my pains were so severe I was using my crutches. Even with my daily pains, I try not to make use of the mobilized wheelchair or crutches because I hate the feeling of handicap or disability. I hate the stares and especially when everyone is trying to help you like you are incapable of doing shit. And for those who know me, it is rare for me to accept help. I like to get shit done myself, when I can. I mean I am a Diva and I love when people do stuff for me, but when it comes to aid - aid in walking or getting out of the car - I want to be able to do it myself.

The day after, my pains were still there. Dr. Sinha called with the MRI and CT results and gave me a list of bad news, which I knew I would receive. Both my knees are gone and my right hip, which was the good hip a few weeks ago, is now my left hip. He gave me strength though and said we'll just have to take it one step at a time. He knows I can do it. I know I can do it too. I know that I'm destined for more than one major surgery. I could be sad if I want too - and I am some days, some days I just cry because I forget why I need to go through all this. But then I remember, I'm going through this because Allah knows I'm strong, stronger than most. And also, I feel that people (friends, family, strangers) have learned so much about humanity and pain being around me. More of them are patient, and more of them are understanding.

I'm not the only one being tested. Everyone else around me is being tested too.

Good Times

After handing in my last final, I made the effort to buy Ruqayyah a birthday gift. Though I couldn't go far, I walked to the nearest gift store and bought her a humorous card and a picture frame. I didn't want to get a readymade gift - anyone who knows me, knows I get creative with gifts, at least those who get gifts from me. After looking for pictures, I found some from the fashion show we participated in during junior year at Bishop Kearney. I wrote a few sentences about our growing friendship - for anyone who doesn't know Ruqy, she is my best friend. She's always been there for me through every thin and thick. There's nothing fake about her. Nor is she two-faced. Nor does she change personalities. And I've had best friends over the years, but some of them are no longer in my life. Friends these days, for the most part, end up being temporary. With the rise of technology, "friends" are all made and built through texting and social networks. However, me and Ruqy are not text buddies. She is that one friend who calls me everyday. I'm serious. And our conversations go on for hours. That's how I know I have a true friend, through phone calls.

After walking one block to buy her gift, my hips were out of control. I felt miserable and had no strength. I came home, made her gift, and rolled around in bed. But I was determined to get my ass up and take her out in the evening along with Jasmine and Chopra. And for those who know me, if I plan something, I get my ass to do it. So there was no way I was going to back out. Ruqy kept telling me we didn't have to go because I felt sick, but I really wanted to make her happy the day before her birthday because I wouldn't be able to spend time with her on the day of due to more surgical pre-testing at Mount Sinai.

Later that night, I took a cab to Beet Restaurant in Park Slope. We all caught up on gossip and ate good ass food. The night didn't end there. We ended up taking a cab back to the apartment to party in 4D. I had my first blue jello shot. Interesting. That's all I have to say about that.

I ended up leaving with Danielle and Tomer, two of my other best friends. They always call me whenever they hang out. We went for a drive and bought some ice cream. Our nightly excursions always end with us eating. Haha.

The day of the 27th, Chopra planned a surprise party for Ruqy which I knew I wasn't going to attend due to my appointment that ended at 7pm. However, I ended up surprising her a little before 12 am with Danielle and Tomer. After surprising her and getting to know some of her other close friends, Danielle, Tomer, and I ended up eating at Famous Pita on Coney Island Avenue. Whenever I'm with them, I become a Jew. Sometimes, I'm cheap like a Jew. And other times, I'm a Jew eating kosher. I love it! And I love them. I ordered the schnitzel while Danielle had a shwarma and Tomer a falafel on pita. I wasn't home till 3 am.

You live life once, and waiting to have fun in the future, does not make sense. Do what you want to do, nowwwww. I mean now. Get your ass off the computer and enjoy life.