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.