Awake

This book is for those people who only read in bullet points. Thanks to everyone for their support by visiting me in the hospital or after and for sending all the gifts and cards! INTRODUCTION Here’s a summary of my illness from the beginning: In October of 2004, I started feeling pain in my joints, first my wrists and elbows, then my knees. I had gray scabs forming on my skin, mostly on my knuckles, but eventually on my face like my nose and neck by the back of my head. I went to see four different doctors. They all diagnosed me wrong, with dermatitis or carpel tunnel or ringworm or all of them. Then, after months of suffering and not getting my health problem fixed, I went to Brazil in January of 2005. My father was born in Brazil, and we went to visit family. I saw a doctor there. When I told him my symptoms, he right away examined me and asked if I had been tested for lupus. I heard of it, but I didn’t know anything about it, like most people. Apparently, it’s common in Brazil; I don’t know why. When I got home to Chicago, I asked Dr. Palacio, one of my doctors, if I could be tested for lupus. It’s an expensive and complicated test. There’s no one test for it. There was a series of blood tests. After taking the blood tests, the results came back positive for lupus. My doctor couldn’t believe it. He thought it might be a false positive. He tested me again. And again the results were the same. He told me and was so melancholy it was like he was telling me I had cancer. My mom had gone with me and she cried. I didn’t understand the gravity of it. It turns out, I would be on medicine all my life…or so I thought. Lupus, I learned, is an autoimmune disease where the immune system attacks the body’s healthy cells. No one knows how I got it, but about eighty percent of lupus sufferers are women, and it usually starts showing up when someone reaches his or her early twenties. I was having kidney failure, but the medicine, Plaquenil or the generic Hydroxychloride, helped fix that. I no longer had signs of kidney failure. I thought I would be okay after that; I just had to keep taking the medicine. I would take ibuprofen for pain most days, when the rheumatoid arthritis was so bad that I couldn’t get out of bed. After 30 minutes or so, the ibuprofen would start to work. A lot of times I’d still go to work with no ibuprofen, if the pain was bearable. I didn’t like taking medicine, but it was worth the hassle if it helped the symptoms of my illness. I was photosensitive as part of lupus, so I couldn’t even enjoy a sunny day. I had to be under an umbrella on the beach or wear sunglasses inside my office building because a lot of sunlight would come in through the tall windows. The shades were thin and perforated, but I would still pull them down. They barely blocked the light, especially in the summer. If I had been exposed to direct sunlight for more than 15 minutes, I would get really fatigued and sometimes get skin rashes, like those of a sunburn, but blotchy. I never got sunburned as a child. I would spend hours in the pool and get a really dark tan. The fatigue probably plagued me the most. I could handle pain from my bones because of rheumatoid arthritis, but there was no help for the fatigue I felt. I would drink coffee or walk around, but that would only help a little. I had to take precautions when winter came. I wore a lot of clothing, hats, gloves, a scarf, etc. I even bought a snowsuit jumper. It was for kids, but I got a large; that’s how small I was. My coworkers would joke about the jumper. It did make a lot of swishy noises when I walked. They would ask me if it was that cold outside. I wanted to tell them my problem, but I would just say I’m sensitive to the cold because I was anemic, which was true. I bet I looked frail enough to be cold a lot. I guess I never got used to Chicago’s weather. I was in my senior year of college when I was diagnosed with lupus. Like my life wasn’t hard enough…I quit my part time job at the Federal Reserve Bank in March. I didn’t want to, but I was already so tired; I couldn’t go to school and work at the same time. I graduated with a bachelor of architecture degree with honors. I was able to focus on school now that I wasn’t working. It was hard to find work when I graduated. I found a part time job at a sushi restaurant, Mirai Sushi, as a hostess. I didn’t even like sushi. I still don’t like fish, even cooked. The restaurant would open at 5 pm, so I had to be there a little before and I would work until 10 pm. I got the job by just walking in and applying and interviewing in person. That’s how I got my part time job at Leopard Lounge as a cocktail server. Then I walked into KLLM Architects and got a part time job there. So I was working three jobs, part time, at once. I don’t know how I had the energy to do that. I used to feel so fatigued in college. I partied a lot as a young adult in my early twenties. I thought the lupus was payback; that it’s what happens from going out too much. I used to dance at least three or four times a week. I loved salsa and bachata. I hated that after the coma I couldn’t dance anymore. I still listened to the music a lot. But not being able to dance made me realize that I hadn’t appreciated it before. Now that it’s gone, I miss it a lot. I still know how to, like with everything else, I just can’t physically do it. My legs and feet are not fast or strong enough. When I first came out of the coma, I asked “Why me? What did I do?” And my parents would just say they didn’t know why. These things just happen. Maybe I have something to do in life and it wasn’t my time to go. I still don’t know what that is.