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.