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  1. 1. I'm now 16 years old, and am now re-accounting a traumatic event for me that led to my diagnoses of WD around 1.5 years ago when I was 15. I went to the emergency room after becoming so anemic and passing out a couple of times on Sept. 26th, 2008.<br />My mom was always there for me. Every night, she sometimes stayed up thinking of how to diagnose and treat me because she was a nurse herself. She worried and cared so much about me. I meant everything to her. She cried so much over me and told me she loved me more than anything else in the world, even more than my little sister. Without her, I wouldn't be here. I love her more than anything else in this world, and I'll never stop owing her. Currently, she's constantly sick because of taking care of me back then. She was so stressed that it took a toll on her health and she even looks older than she should. I'm very worried and am desperately praying for her because I'm only 16. I’m lucky to have a mom like her. I don’t think any other mom would have done this much for her child.<br />It all began when I went to this social for my school. I binged on chocolate candy and cookies. After that, I felt incredibly sick and my face turned very pale. I looked extremely yellow. A week later, I had the worst stomach cramps ever and went to the nurse. I couldn't stop moaning and doubling over. Another week later, I got up around midnight to get a glass of water. I went downstairs, and as I took out the micro waved hot water, I blacked out and fell. My mind was fuzzy when I woke up on the kitchen ground, my forehead bleeding (apparently from hitting the counter while falling) and feeling very weak. I hauled myself back upstairs and fell instantly back to sleep. <br />The next morning, I woke up feeling at least 10x as weak as the day before. It took me so much energy and willpower to get up and move myself to get ready for school. I went to my parents telling them that I didn't think I could go to school that day because I had absolutely no energy. My mom took me to our family doctor to get some blood work. Later on that day, the doctor called in saying my hemoglobin was around 5 (normal is 12-16) and told her to send me immediately to the hospital. I felt very confused back then, but didn't have the strength to worry about it. I waited a while in the emergency room before it was my turn. When I saw the doctor, I needed to use the restroom. <br />I passed out in the restroom. I woke up a few minutes later with my mom shouting for help and supporting me off the floor. A couple of nurses rushed in and lifted me onto a bed. I fell asleep around 7 PM , missing dinner. When I woke up, I found my mom crying beside me. It was already around 9 in the morning. I was in the ICU in this huge room for a single patient. I felt so much better, but my hemoglobin dropped to 4.4 by then. Immediately, I was given a blood transfusion and had 2 IV's stuck into my arms with liquid pumping into them. <br />I was impatient about returning to school because I wanted to get of there, but the doctors couldn't figure out what caused me to have anemia. I had many tests performed on me: CT + MRI scans, ultrasound, and about 3-5 (INSANE, right?!) blood draws A DAY! I was so weak that I couldn't even get up out of bed to use the restroom, so I got a cord attached to my urinary tract. My kidney was starting to fail from extreme dehydration, but the doctors saved it. The days spent while in the hospital passed by so quickly, but overall it felt like an eternity. Every time I looked at the clock, it would always be a couple of hours later, not matter how short it felt. <br />I had NO idea what was going on, but I knew my mom worked on her laptop beside me and was on the brink of getting fired for missing so many weeks of work. All her vacation days were used up. Over the next few weeks, my stomach grew insanely huge and bloated. The doctors were crazy and thought I was pregnant (IMPOSSIBLE!). It turns out that my pancreas wasn't functioning properly. My liver was badly scarred. I put on about 30 lbs. of weight!! In addition, I haven't taken a shower in over a week, or even moved out of bed. My tailbone started hurting like crazy, and just when I was discharged out of the hospital, I had to go back. It took a few days for my stomach to shrink back to normal, but I never officially returned to school at that period of time. When I did, my boyfriend would help me carry my books and go through the elevator with me, but I would throw up constantly and have these horrible migraines. <br />My blood hemoglobin has never been normal since then. On my 2nd blood transfusion, I had a severe allergic reaction in the middle of the night. My head was incredibly itchy and I couldn’t stop scratching it. My mom came over as fast as she could, and I told her I wanted to pull my hair out because I couldn’t stand how painful it was. My mom cried at the sight of me scratching my head non-stop and yelled at the doctors for messing up the blood transfusion. She thought the blood was being transfused too quickly, thus I made a reaction to it. Eventually, the itching stopped after I took some medication. My mom comforted and held me. From that night on, she never let me out of her sight and stayed with me every night at the hospital and at home. She didn’t go to work most of the time. The several times I went back home, she would sleep with me in my bed. I love my mom dearly, and nothing could replace her. Whenever the doctors were performing a test on me and she saw me in pain, she would secretly do everything possible that she could’ve done to lessen my pain. Like, when the needle was too big it left a bruise on my arm after the blood was drawn. <br />Then, I started losing weight too fast. They gave me something to increase my appetite, but my face became puffier as a side effect. I ate 5 huge meals a day: it was insane! I was almost underweight. The doctors were getting desperate, so they did a bone marrow. This was a critical turning point in my mental stability. After the bone marrow, I had the worst migraines. I couldn't sit or stand because of how much my head would hurt. I slowly started losing my sanity. I hallucinated and eventually came to truly believe that I would die if I fell asleep by the time I was diagnosed with WD. But before, the doctors put me on chemotherapy for 2 weeks because they had no other choice. A pick-up line was installed into my left arm. To this day, I still have this big hole in my left arm from it. I didn’t even have cancer. Slowly, my hair fell out until I became completely bald. My mom cried so much and thought I was too unfortunate. She knew what a good student I was. I worked so hard at school and made the top grades in my class. All my classmates liked me, but no one but my boyfriend and 2 other friends visited me. Though, I was sent several cards and presents.<br />One day, while lying in my mother’s lap (bad migraine) before a session of chemotherapy, I told her, “I don’t want to live anymore. I can’t take this anymore.” She cried so hard after that selfish remark of mine, but I just wanted my pain to end. I couldn’t stand the migraines and terrible cramps I was getting. I got one more blood transfusion because of all the blood work they did on me on any time of the day or night. My hair is slowly growing back now, but I’m glad the days when I had to wear a scarf are gone. My room was so cluttered back then (I’m the most organized person I know.) because I had no strength to let it stay clean. I would sleep all afternoon and only half of the night, getting up around 2 in the morning to eat another meal (frozen dinners). I craved American food, so my parents spoiled me to no end by letting me order whatever take out food I wanted, whether it was pizza or spaghetti. When I had the energy, I would sit in my bed and do my homework, but usually I would never leave my bed unless it was necessary. My parents would bring me anything I needed.<br />After 2 weeks of chemotherapy, I got my pick line taken out because of the results from the 24 hr urine copper test. My mom requested it because earlier on a doctor came in and suggested it, but she had to take some time to decide whether or not to do it. Then, I went to the eye doctor and they found out I had Keiser-Fletcher rings. The doctors were very happy to find out the cause of my anemia and all the other problems I had. Because of WD, I had liver disease. I mostly displayed liver symptoms because my liver was badly scarred. I’m very emotional and tend to get depressed and angry easily, but these extreme emotions go away quickly. To confirm that I have WD, I even got a genetic test for WD, but that test took several weeks. <br />Then, the doctors got increasingly worried about my liver levels, so they recommended me to go to the Cincinnati Children’s’ Hospital in Ohio because over 300 WD patients were diagnosed there. Plus, it was the 3rd best hospital in the U.S. I took the private jet there, and was strictly and closely monitored for 2 weeks. This period of time was the most degrading. I couldn’t tell if I had slept or not because I tried to stay awake as long as possible. I was so insane and out of my mind that I came to believe that reality was all a nightmare. Nothing seemed real to my anymore. I had hallucinations of people on TV addressing me directly and saying my name. I was seriously lacking sleep. I wasn’t functioning as a normal person anymore. I thought the doctors at Cincinnati were testing me or tricking me. I thought it was all a game of saving my life. I didn’t know how to act. I kept on thinking I wasn’t at the hospital but in another world. My imagination went wild and I was scared. I thought everything was made-up. I didn’t remember moving from the top floor to the bottom floors of the hospital. My mental illness had an impact on my physical well-being. <br />I wouldn’t eat, and was very depressed. I truly believed that I was in hell and wasn’t alive. I thought it was a cycle of a never-ending nightmare and that my real body was back at home. I was completely insane. I didn’t believe anything that happened. I rejected my parents being there with me. Things were too unreal for me. I tried to escape my room multiple times. I ran down the hallway screaming for help. I sat at the window in the wheelchair looking outside to what I believed to be fake scenery. I thought I was in a doll house of hell. I desperately wanted to go home. I cried myself to sleep almost every night and told my mom about my nightmares, which were actually real things that I experienced during that time. Sometimes, the doctors wouldn’t let me eat for the whole day. They had to ask me what day it was and where I was over and over. It confused me so much. They even asked me for my name and birth date every day. I would panic at how they expected me to respond and look down at my bracelet, which had my name and birth date on it. I pretended I forgot my own name because of how mentally ill I was. It got so bad to the point where I thought I was dying over and over again. I would scream out “Emergency! Call the ambulance! I’m dying!” to the nurse, but when the nurse said that nothing bad would happen, I saw her as a bad person trying to confine me.<br /> I was afraid of everything. It wasn’t until the day before I was discharged that I realized that everything was real and I was safe again. I fell asleep normally for the first time in many weeks of restless sleep. It was an 8 hour drive back home, and I was way too tired. The entire time I was afraid of forgetting, forgetting about my past and who I am, and especially my family and friends. The entire time at the hospital, I would daydream of how my life was before I ended up this ill and how wonderful it would belike to go back to that lifestyle. I knew it wasn’t going to be easy. It wasn’t until the end that I thought of myself as an unfortunate being. My mom would always say how unfortunate I was, but the nurses would tell me of how strong I was going through all of this.<br />During my time at the hospital, I have done nothing but eat, sleep, and talk to my doctors, nurses, and especially, my mother. I remember the hospital food being nasty, but I had no choice but to eat it. My mom would also eat some of the stuff I didn’t finish. My dad, sister, and neighbors came to visit often. They are all praying for me to get better now. I’m slowly getting better and recovering from WD, but I can’t get rid of this disease because it’s genetic. I couldn’t believe that WD wasn’t discovered until the 1940’s! I’m lucky to be born into the 21st century. When I finally returned home from Cincinnati, I didn’t have to go back to hospital after that. I was still mentally broken down, so I would sit at home all day doing nothing. I didn’t know how to act normal. I would impatiently write down a bunch of reminders of what to do- basic procedures such as brushing my teeth and getting dressed. I was afraid of forgetting these simple tasks, but it turns out it was impossible to forget implicit behaviors (as learned in Psychology). For the first few days while back home, I would gradually return back to my normal daily life, little by little. I would try hard not to sit and stare at my laptop and the walls and actually do something productive or something that I enjoy. I was a little impatient at that time. <br />Finally, when I returned back to school, I got so stressed out over all the school work I had to get caught back up on, especially since I’m in the IB (International Baccalaureate) program. Being in the IB program is a challenge and there’s so much work to do. But luckily, my teachers were lenient on my exams and I got to take them at home with help. My parents wanted me to repeat 10th grade, but that would hurt my pride so I worked extra hard to stay in. I get embarrassed easily and didn’t want to lose my identity. 10th grade has got to be the most troubling year of my life. All I could think and talk about was my health and how I was fluctuating between good and bad results when I visited the doctor. My boyfriend got tired of me only caring about my health, so he broke up with me. Now that I think back on it, having this disease probably plays a large factor in determining the outcome of my relationship with him when coming back out of the hospital. But I learn more about life every day, and how to be as happy as I can be. <br />Right now, I’m also praying for my well-being and speedy recovery. I’m lucky to be diagnosed early, but I’m very lucky to be alive. But I’m luckiest to have such a wonderful family to support me. They genuinely care about my personal happiness and would do anything to help me through in recovering. <br />