Story by Gabrielle Sawh
I was 13 years old when I was diagnosed with Systemic lupus erythematosus (SLE) or Lupus as it is commonly known. Back and forth between doctor’s appointments and being told I have to stay in the hospital, I thought I was dying. At 13 years old I didn’t know what was happening. All I was worried about was starting high school.
I was put on high doses of apo-prednisone (60mg) to help boost my platelet levels. Along with boosting my platelets I was having sever headaches and brain fog. I stayed on it for quite a number of months. The medication affected my body a lot. I was gaining a significant amount of weight very quickly, my mood was up and down constantly and my joints and muscles were beginning to become very weak. I developed acute arthritis. It was tough dealing with this throughout high school because none of the other kids knew what I was going through.
When I entered into my senior year of high school, my lupus started to affect my brain which affected the way I was thinking. I couldn’t remember what was being told to me and I was constantly forgetting everything. That’s when I knew I was having a flare. I received the necessary treatments for it and responded well. Thankfully it did not render me from graduating and moving towards a post-secondary education.
When I left for school the following fall, I had gone a whole year without significant flares. I still continued to have joint and muscle pain and still had the headaches, but I was able to tolerate it. When I entered into my second year second semester, I could feel myself having a flare again, but this time it was in my brain. I was forced to leave school and get the treatments I needed.
After a second treatment, I re-applied to a new school closer to home. And it was the best decision I ever made. I was able to get myself better with my family by my side and was able to slowly reduce my medications. I am now currently on 5mg of prednisone and have high hopes to be completely off it by Christmas 2014.
I get a lot of questions from people saying why I don’t look sick or what exactly is lupus? Although it can get frustrating having to constantly explain to people what it is and constantly reminding then, “no it is not like cancer”, I don’t mind it anymore. I want to be able to educate people on what I go through everyday. And although I have to work a lot harder to accomplish things throughout my day, I appreciate life a lot more than someone who doesn’t have an obstacle they have to overcome everyday. I’ve educated myself in the benefits of exercise and healthy diets and in the end although I am still sick, I appreciate the little things in life. In a weird way, I am grateful for my lupus.