When I last left off, I was ramping down my Prednisone dosage in anticipation of starting Remicade infusions. I had to get a previous negative TB test result from Georgetown and a chest x-ray to show that my lungs were fine. If someone receives Remicade with TB already in their system, they often start having TB symptoms. As I have mentioned before, Remicade is an infusion of immunosuppressants normally administered every three months in a hospital visit. When I showed up at the doctor's office for my first infusion in the first week of August, I was in very bad shape. While I hoped with all my heart that I would soon feel better, it seemed like nothing worked or ever would. In typical Emily-fashion, I managed to bike three miles to the doctor's office for my infusion (it was flat and still took me 40 minutes). I persuaded the nurses not to give me Benadryl through an IV - Benadryl is used to reduce fever frequently induced by Remicade - because otherwise I would crash on my way home. They didn't have much choice.
At that point I started losing my emotional composure whenever I went to the doctor. When I actually had to think and talk about all the pain I was going through, it made the experience seem more real. It was hard to explain to a concerned nurse why I looked like I was about to cry all the time. If I had been honest, I would have said, "I feel like my life is falling apart and there is nothing I can do about it." Tactfully, I usually just told them that I was in pain - true, but not something that would usually make me cry in front of anyone. Sometimes I thought, "Is this really happening to me?" I almost felt like I was losing track of who I was because the only things I thought about were pain, sleep, where the bathroom was, and trying to pretend like I was not thinking about only those things. I honestly don't remember most of August. I slept, took pain killers, ate a little, took anti-spasmotics and read Roald Dahl books. My ability to read greatly decreased and I went back to books that were easier.
At first Remicade completely stopped my system. I just didn't move much. I was in significant pain unless I was laying down. The first of my walking troubles commenced. I was able to walk a couple of very very slow blocks at a time. My uncle came to California to visit me and he realized that we couldn't really do anything together. I wasn't just altered physically, but also emotionally. I was in a very different place than the people around me so I just didn't say much because there wasn't anything to say. Remicade is front-loaded, like Humira, so I was scheduled for a second infusion two weeks later. I got up early so that I would feel better by the time of the infusion but I still wasn't used to the incredible pain that tore me apart every morning. The only pain killer strong enough to reduce the pain was morphine, which was obviously not an option at home. My mom finally picked me up, brought me to the car and told me that I would be okay eventually. In addition, I was bleeding what seemed like buckets of blood. All I saw was blood blood blood. It was like my insides were just dying. I thought, "How could I bleed that much every day and still be alive?" Sometimes, the body is surprising. It can seem like it is killing itself, but can also stick it out even when your mind feels like you're done.
Although Remicade definitely made me feel different, it did not make me feel better. My doctor then first started discussing surgery with me. Since I was in such bad shape, he thought that surgery was the next option. I hadn't yet tried the pill that takes three months to work, but I simply did not have three months in my condition at that time. First, however, my doctor wanted to do another colonoscopy to make sure I hadn't healed at all before giving up on Remicade. Of course, I was overjoyed. My third colonoscopy in less than one year! Hurrah. This may sound odd, but I actually couldn't wait to be sedated. I was miserable when I was awake and woke up every hour or so from pain when I managed to get to sleep. I could get no relief and the idea of not being conscious was quite appealing. Because my body was so exhausted, the preparation was much more difficult than it had ever been before. I had no endurance and went into sedation in tears. I saw no way out. When my mom and a nurse were talking as they waited for me to wake up for sedation (for some reason I didn't wake up for hours), the nurse took one look at me and told my mom, "She's not going back to school."
Surprisingly, my doctor found that I had healed significantly, just not on the left side, where I still had severe ulceration. That was what was causing all the pain. It seemed like Remicade was working and he even recommended that I go back to college because he predicted that I would just get better and better. He said that taking a semester off would be the "most cautious" approach and doubted that I needed to. Perhaps because I had been minimizing my symptoms, I simply did not agree with him. There was no way I could go to class or get anything out of the college experience in such a state. I spent hours every day lying on the floor waiting for each pain wave to slowly recede from my body. I also didn't go anywhere except the doctor's office. Jigsaw puzzles were as advanced as my cognitive abilities went. How could I do function at school? Although I did seriously consider going back to Georgetown, after talking with my dean, I realized that I was in complete denial about how sick I was (Is this a recurring theme?). I would go back to school when I could, but my health was the absolute biggest priority. I thought that maybe if I got better a month or two later, I could have an internship and take advantage of the situation. It was the first time I couldn't do something that I wanted to do on account of my health. I felt like I was letting something go and losing control. However, I also told myself that everyone faces obstacles in their lives. Many people my age haven't faced such challenges, but most of them eventually will. My time came earlier, and in some ways, I am all the better for it.
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