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! 

1 comment:

  1. You mentioned Chadni. her family really kept things under wraps til it was too late. lol i give u full permission to tag up my room with your left hip thing lol youre so adorable