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?