Sunday, September 26, 2010

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?

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