Friday, July 27, 2012

nothing specific

This is a long post.

In my last piece I questioned the functions of my mind and body in disabling my personhood. I eventually accepted that what I'm living is not living. Since that post (July 15), I've become stronger.  Cliché, but I can't get over how perfect some things seem to work out. As much as I sometimes feel that states of sadness or depression will last forever, they don't.

I'm 21. And when I was diagnosed at 17, I had never thought I'd be the person I am right now. I imagined a different me at 21 when I was 17. It's very interesting because I pictured myself away from my parents in an out-of-state college. I'd be in my senior year of college, probably getting ready for medical school. Today, none of this is the case. Today, I have a list of medical problems. I'm not pursuing medicine, rather, battered women. I'm barely a junior in terms of credits. My close friends are graduating in the spring of 2013, I'm not. And lastly, I'm still living with my parents in Brooklyn. But surprisingly, it all feels right. But I'll come back to this.


Some Updates
I have completely transitioned to an adult rheumatology (lupus specialist) and orthopedic (hip/knee specialist) clinic at the Hospital for Special Surgery and nephrology (kidney specialist) clinic at the New York Presbyterian/Weill Cornell Medical College... all located in Manhattan. The switch was arduous and time-consuming... some days I thought, I'll never find a doctor. I'll just be my own doctor. Thank God that didn't happen. The transition is a success so far. New city, new doctors, and perhaps, a new me.  Cliché  might just be the title of this post. 

Since the shift, I underwent another kidney biopsy -- a procedure in which kidney tissue is tested for further analysis. Due to the increasing protein levels in my urine, the rheumatologist and nephrologist decided they needed to know what was going on and why. Finally! For all my friends pursuing the medical field, please take that shit seriously. I know there's money involved, but let's be mindful about treatment options and actually catering to the patient's needs immediately. I had protein during diagnosis (which indicated kidney disease/Lupus Nephritis), and now, four years later, it's still the case. Why? Is a question I asked as well. But the past doctors relied on answers such as "Well, it could be many factors...bla bla bla." "Bla bla bla, surgery." "This new medication may help, but... bla bla bla."  And conducting my own research online to solve the mystery wasn't the best idea as I found answers that terrified me. 

We've all done this.
After the biopsy, the results indicated Lupus activity in the kidneys -- one reason why there's an elevated amount of protein. Secondly, I had to stop the only working anti-inflammatory pain medication, Diclofenac. Such a beautiful medication. Now I am forbidden to take it because of its severe effects on the kidneys. Why didn't the doctors warn me about this before? Maybe around 2008 when I started taking Diclofenac? I'll never know, but now I'm always in pain. The kidneys are being treated with a new medication, Cellcept... I take 5 a day. If Cellcept doesn't save me or my kidneys rather, the options left are dialysis (filtration of the blood and removal of wastes...yea, research this) or a transplant (replacement of the organ to a healthier one). I'm not sure how soon I'll need any of these other options, but I'm not worried. Cellcept might work for me. 

Stopping Diclofenac was heartbreaking. Every ache that was cleverly hidden, is now alive. With my progressive bone disease (Avascular Necrosis), I have already accepted that one by one my joints will need replacement or some sort of surgical manipulation. However, Diclofenac was my only hope for putting off some of the major ones by at least a few years. Though I have taken narcotics before which have not worked to cure any pain at all, I was given Ultram (Tramadol, narcotic-like). Instead of feeling better, I felt nauseous, dizzy, and sweaty. Currently, I'm not on any pain meds. My handsome nephrologist, Dr. Patel, actually he's hot even though he's about 3 inches shorter than me, thinks this is "brave" of me. No, not that I am totally in love with him even though he's a midget. I'm brave because I'm not taking any pain medications. Is this bravery?

No pain meds, more pain. It's officially time to dress my hip with a new one. Next Tuesday, July 31st, I am scheduled to have my right hip fully replaced. Plastic body. Ceramic head. I'm looking forward.

Awakening
I wrote the previous post (mind/body dilemma) while feeling shitty. No pain medications. Only worries. About my future. Will I ever graduate from college? Why me? Did Lupus have to happen? When will the pain stop? As much as I try not to, I find myself occupied with these overwhelming thoughts. Though I'm very public about my series of illnesses, my feelings and emotional dialogue are repressed. Sometimes apparent in writing, but never in person. 

Since diagnosis, I've built myself to stay strong not only for myself but also for my family and friends. I know I have their support for when I'm an emotional mess, but I don't want them to feel worried or sad. Which is why I make sure that whoever I'm with, it's always just laughs and even if we get into a serious conversation, it's never an emotional one. 

I broke the cycle. Psychological problems are a taboo where I come from. Depressed? Keep yourself busy. Anxiety? You'll get over it. Stressed? Think positive thoughts. I used to take these mental downs lightly...very lightly. I didn't think they were so serious until I knew emotionally I was going through something more severe than just the manifestation of Lupus. Growing up in a family and culture where problems of the mind are up to the individual to fix or treat is how I tried dealing with it. When I realized some of my behaviors and moods (I don't want to go into detail as writing this is very hard for me to do) were out of the norm, I decided to see a therapist. No one likes to talk about this because while it is private, it is stigmatized and stereotyped. It took me eight months to build up the courage to see one. As the sessions continue, I'll write more about this. But so far, I know it won't hurt me. 

Support
My parents. The most supportive people I know. However, I've overlooked this tremendously. I've been attending my doctors appointments alone since turning 18. Going to appointments and college alone mean independence and the ability to take care of myself by myself. Recently, with all the emotional stuff going on, my rheumatologist suggested maybe you should bring a family member for support, maybe they need to see these tears. It's usually in her office that I find solace and the freedom to cry. In almost every visit, I've cried. I try not to look at my doctor because I know it's awkward and she's probably thinking to herself must she cry every time I see her? I don't know why I cry. I do, but I'm not sure why I find comfort among a complete stranger. I have no shame in looking hideous with my eyeliner and mascara running down my face. It's strange, but I always leave the appointment feeling much lighter. Another reason why the therapist is working, I can cry all I want

Last week and onward, my mother and father have been accompanying me. It reminds me of when I was in my pre- and elementary-school years where during the yearly/monthly check-ups, my mother, who knew very little English then, dealt with Sabia (the runaway) and I so patiently and never missed an appointment. Their support has stayed constant. It's interesting to think how before turning 18, I yearned to be 18 (an adult) and independent, something I defined as being able to do things alone. Now, 21, being with my parents and having them accompany me in these appointments makes me realize independence is shared. With their presence, I'm more confident. And though they still continue to ask a million and a half questions about things I simply do not want to answer and usually do not answer, it's okay. With them, my life is worth living.

The Parents. And might I add, they are the funniest people I know.

Sunday, July 15, 2012

Unsteady Balance

I feel compelled to ask What is life? Why is it? Is there any purpose to my particular birth? My being

Lupus is such that every day my body decides whether or not it will let me live. How I'll feel, how long I can stand on my feet, sit on my pitying ass, and walk the old bones. And most likely, I don't argue about it or get my parents or friends involved. I live in hope. And patience. That each day will be fine, regardless of the physical pain followed by the growing emotional distress. I'm actually contemplating about seeing a therapist, finally. Do you know how difficult it is to live in hope, patiently waiting for that day when I'll possibly be pain-free? Don't know how plausible it is, but it is possible. Isn't it? 

Every now and then I ask Allah (God). Why produce a being so useless? But the last month or so, I've become so faithful about my existence through prayer. I don't question existence. Rather, I question the virtues of patience and hope. I ask Him to bestow me with patience and the willpower to endure the pains...as if miraculously it will all be gone one day. It's possible, isn't it? Is it enough? 

I really wish I had my body to myself. Though I believe my mind and body are separate entities, the two fundamentally work together to produce what I am. I believe after four years of living Lupus, my mind is all I've got. The body is essentially present, but I know, it's not with me. 

Walking. I miss it. I'm mobile, but not mobile enough. And my ego is such that I'm ashamed to carry a cane. And ironically, I rather limp. But I know what it is. It's the yearning to stay absolutely independent. Or I'm probably afraid of embarrassment. It's mind boggling to me that I rather limp, a visible weakness and imbalance. At least with a cane the walk would be less wobbly and more steady. I don't understand myself. 

Some days, I walk with ease and comfort...I don't want to stop. The happiness that comes from a day of pain-free walking is unlike any other feeling of pleasure. Well, I'm still waiting for sex to happen. That might top walking. Other days, it's as if I'm dragging my legs to do the walking. The mind, trying its best to push and persuade, fails. I remember the time when walking was so automatic. Without any thought or attention, I'd walk and walk. Now, if I'm lucky, actually it's not luck anymore. The body is too stubborn to walk with me. 

Is the mind enough to live a life like this? I'm alive, but without the support of a body, am I living? 


Questions or comments? shahana.hanif@gmail.com. Please nothing anonymous.