02 May This is My Lupus Story
It all started at the end of August, going into September in 2015 when I went to get my physical done to play sports for the upcoming school year. I was 12 years old going into 8th grade. The doctor said everything was fine, until he saw my urine sample. The doctor noticed some protein in my urine and he wasn’t for sure why it was there. He also noticed my butterfly rash on my face. At first, we thought it was sunburn, but then the doctor said it was a butterfly rash. The doctor said he would call us in the morning because he hasn’t seen anyone with these symptoms before. The next morning, the doctor called my parents and said I need to get to Helen DeVos Children’s Hospital right away and that he already called them and told them we were going there. At first, I wasn’t super worried. I thought it was going to be a one day thing and that I was just going to have a regular check up and then go home after that. Besides, I never get sick anyway so I’ll be fine. I was wrong. The doctors had taken blood samples and a urine sample, and then they said the 3 words I will never forget for the rest of my life. “You have Lupus.” At first, I wasn’t really for sure what Lupus was. I never even heard of it until that moment. The doctor explained to me what Lupus was and how they don’t know how I got it. They also told me how it affected my kidneys and how they would have a kidney biopsy in the morning. I was thinking, okay, so, they are just going to treat me and I won’t have it forever and I will be healthy again. But then the doctor told me that it is incurable and only treatable. I couldn’t believe what he said. I would have this the rest of my life. When I had my kidney biopsy the next morning, the doctor told me that if I waited another week to come in, I would have had permanent kidney failure. It was also very rare for me to have it at 12 years old.
I ended up staying in the hospital for 12 days. These also happened to be the first 12 days of school. I struggled so much in the hospital trying to drink lots of fluids to help my kidneys function better. I had to drink 2 liters of water everyday and I had lost some of my appetite, so that was super hard. After I got released from the hospital, I went to school. It was very hard trying to get caught up with my work. I would get cramps from writing or typing and I would be tired as well. I also missed out on playing Volleyball that year. But as the school year progressed, I began to feel a little better. I had to get infusions once a month for 6 months. The two treatments were the Cytoxin which took about 6-8 hours, and Rituximab which took 4. I also gained weight from Prednisone. I used to weigh 100 pounds, but then I ended up weighing at the most 130. I ended up having to cut my hair as well because it was so thin.
The first year was super hard for me, it still is, but I have so many supporters supporting me and it has helped me battle Lupus. I used to take 12 pills in the morning, and 6 at night, but now I take 5 in the morning and 5 at night. I thank God everyday for letting me be able to do things that I thought I would never do and for letting me feel good everyday. I look forward to living my life because “I can do all things through Christ who strengthens me.” Phillipians 4:13.