I have Wilson's disease which is a rare inherited disorder that causes too much copper to accumulate in your liver, brain and other vital organs. Symptoms typically begin between the ages of 12 and 23. Copper plays a key role in the development of healthy nerves, bones, collagen and the skin pigment melanin. Normally, copper is absorbed from your food, and any excess is excreted through bile — a substance produced in your liver. But in people with Wilson's disease, copper isn't eliminated properly and instead accumulates, possibly to a life-threatening level. When diagnosed early, Wilson's disease is treatable, and many people with the disorder live normal lives.
I was 21 when I was diagnosed. My first symptom was when my ankles and feet swelled up and I went to have an MRI to check to see if I had blood clots, which I did not. I also wore a holter monitor, a machine that continuously records the heart's rhythms. I wore the monitor for 24 - 48 hours during normal activity, because I would wake up with horrible chest pain. The test results came back "normal."
My senior year of college, I started having trouble writing by hand, so I had to type all of my work. Then I started falling a lot and I had to get glasses because my eyesight was deteriorating. I became very anxious and depressed, which is really abnormal for me because I'm a happy and outgoing person. My doctors prescribed me anti-depressants and anti anxiety medication. Nothing helped. I started talking very softly even though I have a loud voice; I was even the captain of my soccer team because my voice carried. I graduated college in three years and had just started my first semester of the physical therapy doctorate program at Rockhurst University. My professors said that it seemed like more than depression and anxiety and told me to have a neurologist look into my symptoms. The neurologist had me do an EEG to monitor my brain's activity and to see if I was having seizures. Again, the results were normal.
I began feeling like a lab rat and like I was crazy. Luckily, my mom didn't give up and asked for an MRI on my brain and that's when they found the copper in my brain. Since Wilson's is extremely rare the doctor's in Springfield sent me to the University of Michigan, which is a center of excellence for Wilson's disease. The doctors diagnosed me with Wilson's and put me on Trientine to get the copper out of my body. Then I went into the hospital a month later because I couldn't swallow anymore. I was terrified but my family promised they wouldn't leave me there alone. I was walking and whispering until they put the feeding tube in. After that, I couldn't walk or even whisper. My muscles became very rigid. The pain and the fact that I couldn't communicate scared the (pardon my French) shit out of me.
Then I was moved to another hospital in St. Louis, MO. I guess you could say I have a high pain tolerance or that I'm a "walk it off" kind of person, but I was literally bawling and writhing from the pain. Since I was three hours from home, my mom was the only one who could go with me. My parents both have full time jobs so it was too hard for them to stay awake with me 24/7, so we moved back home so my family could tag team staying with me.
The 12 weeks I was in the hospital were a nightmare. I even told my family I would rather die than keep living because I was in so much pain. The only way I could communicate was by blinking. Two blinks meant yes and one blink meant no. My body kept building up a tolerance to pain medication so I had to keep changing them. Even opioids, like morphine, wouldn't touch it. My jaw would spasm open so my family had take turns holding it closed. Finally I got Botox, which helped. I coded twice and was intubated once. I was only in the ICU for 24 hours but it was awful fighting the tracheal tube. I also had a picc line for blood draws because the lab technicians couldn't ever find my veins. I did physical, occupational, and speech therapy. I kept throwing up my tube feeding until a nurse had the idea to heat them up.
My life has changed dramatically. I went from being a completely independent adult to needing help for everyday thing, even like brushing my hair. I'm a very proud person so sometimes it makes me sad that I can't do that but I have faith in myself to achieve being able to function on my own. I live with my sister, who's my very best friend. I'm very lucky to have her. I love her more than anyone else in the whole world. She's been through everything with me and has never complained about dropping her life to take care of me.
I have learned who true family and friends are, because I've lived through many heart breaks. When I was a freshman in college I met a guy who ended up being my boyfriend and best friend. We were together for three years and we had made a lot of promises and plans for our future together. He stayed with me the whole time I was in the hospital. I got home from the hospital December, 2013 and he broke up with me a few months later, and I was miserable for almost a year. I lost contact with my high school and college best friends. Most of my friends were guys because girls were always mean to me. If I had any girl friends, it was usually one at a time. I quit believing in God, because I blamed Him for my pain and suffering. I tried to think of reasons He would give me this awful disease when I had my future all planned out. I started thinking it was His way of punishing me, for not always doing the right thing.
My sister was my lifeline. I felt ugly and unwanted. I was so frustrated with my life and was really suicidal. I cried practically every day. When I started crying, my sister made me say "my affirmations." The affirmations were; "I'm beautiful, I'm a normal 21-year-old dealing with abnormal circumstances. I believe in myself, and I'm proud of myself."
Now, however, I have many girlfriends.They all started out as caregivers but they have stood by me through triumphs and failures. Even though some have moved on for other jobs, they still keep in touch! I count all of my friends as family. I also have a restorative nurses aide, named Brent. We work out four times a week to achieve my goals - my main goal was to walk again. With his guidance and pushing, along with my hard work and perseverance, I'm walking and achieving things some of my specialists said I would never be able to do again.
My positive outlook comes from my own progress, friends and family. My advice to others is to never let someone say you can't do something and to never give up on your dreams. I will never give up. My dream is to be a motivational speaker to others who have Wilson's disease. I know how hard it is to fight through the pain and I understand how some days all anyone wants is to give up. I am believing in God again, because somebody had to bring all these wonderful people into my life to be on my team. My personal mantra is "everything happens for a reason" and I believe God gave me this disease for a reason.