No Way! Not Me!

by Marisol Cortez, SUNY Cortland, April 30, 2008

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My problems all began with a rash. Why me? Why did I have an ugly little rash on my cheeks and nose right before I had to go to college? I wanted to make a good first impression. I wanted to look my best. “Oh, it’s just a dermatitis,” said the doctor. “This cream should help.” Did the cream help? No, of course not. I started my first week of college with lots of cover-up on. Hey, make-up can do miracles.

It was 7 am when my eyes met the daylight. I was ready to start my second week of college. Adapting to school had been a little difficult the first week, but I was certain the second week would be better. As I sat up, all I could see were spots in my eyes, then suddenly everything went black. Why was this happening, I thought. Was I going blind? I managed to lay back down and when I awoke I noticed that hours had passed by. Oh no, I missed all my classes; there is certainly no excuse for that! As I started to get up, I felt this weight on me that I had never felt before. I was weak and, surprisingly, still tired. I had to go to work, so I forced myself up, showered and got dressed. When I was ready to leave, I locked the door to my room and headed down the stairs of my dorm. As I was going down the stairs, everything went black again. I grabbed the railing, somehow made my way back to my room and fell onto the bed again.

Falling asleep in classes became a routine thing for me as the days went by. I was always so embarrassed, especially since I had never fallen asleep in a class before. Getting up in the morning to even go to class at all became very difficult. All I ever wanted to do was eat and sleep. I knew something was not right. Something had to be wrong with me. But maybe nothing was wrong. Maybe I was just being lazy, or maybe college was really getting to me.

I was finally able to go home for October break. Oh, how I missed my family! While I was home, I noticed my ankles were swollen. Wow, how did that happen, I thought. The next day my fingers started to swell and they hurt very much. Opening and closing my hand became difficult and I couldn’t even carry anything. I kept my symptoms to myself hoping they would all just go away. A week later, when I went back to college, walking around became very difficult for me. I tried to avoid hills and stairs as much as I could. Infinite pain in my ankles and knees took me over completely. Three days before Thanksgiving break, I noticed that lots of my hair fell out every time I washed or brushed it. I have always had very thick, long hair and it was getting thinner and thinner. I stopped washing and brushing my hair for a few days. When I went home for break, I told my mom about everything that had been happening to me. Tears filled my eyes as my mom took me to get my hair cut. When I looked in the mirror, I could not believe how short and thin my hair was. I did not look like the same person I was before. I could not stand to look in the mirror. However, combing my hair without seeing so much of it falling out made me feel better.

When my mom took me to the doctor, I received the worst news of my life. The doctor’s words hit me like a knife. “I’m sorry to tell you this, but you have systemic lupus erythematosus.” Systemic what? I thought I knew what lupus was, but what was that other stuff? I knew the news wasn’t good. My mom began to cry, so I did too. I am going to die, this means I am going to die, I thought. After the doctor explained to my mom and me what Systemic Lupus Erythematosus was, I felt a little better even though the doctor said the disease was chronic. I knew that my entire life was going to change. I thought that I was going to go bald, because the doctor began talking about wigs. I was going to be weak for the rest of my life, get sick, and die.

Later that day I was laying down in my grandmother’s room when the phone rang. My dad answered and went to the other room. When he hung up the phone I could hear my dad whispering something to my grandparents and my mom. Everyone came quickly to where I was and my mother told me to get dressed. “Why,” I asked. I did not want to get dressed, I wanted to sleep. I had had enough for one day. But I had to go to the hospital, my condition was an emergency. My red blood cells were so low I could have died or something. Anemia is what the doctor called it. I had heard of anemia before. I thought, people do not die from anemia, it can be fixed. When I got to the hospital my parents finally told me that the doctor was going to give me a blood transfusion. Oh my goodness, I thought, they are going to take my blood out and put new blood in me? How am I going to survive that? It turned out that the doctor would just put blood into my body, not take it out. My transfusion lasted 4 hours and I felt so much better afterwards. I wasn’t pale anymore, and I had so much more energy.

Today I am a senior in college and have been diagnosed with systemic lupus erythematosus for almost four years now. I can definitely say living with the disease has not been easy, but I am glad to still be alive today.

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