Joslyn - Diagnosed Age 16
I want to start at the beginning, meaning before I had lupus—in high school. I always heard your best moments would be in college, but boy, were they wrong. My best moments or years were in high school. Before lupus over took my life, I had the best life. I was dancing, singing, and making all kinds of friends. I would not say I was popular in high school, but I knew a few people. All that was taken away from me my first year in college and after that, nothing was ever the same. It started like the flu, and then I just got worse and worse. I became more secluded from people. I started to have this rash on my face between my cheeks and nose (called the butterfly rash) and I was constantly, and I mean constantly, in pain. I had to stop dancing because I could barely walk. At one point I had stopped eating. Every doctor I went to told me it was the flu and it will pass. It never passed. Not until ended up in the hospital for about a week.
Then, I finally learned what was wrong with me. I had lupus. Then the medicine came and what I thought was a miracle - prednisone - my happy drug because that's what it did. It made my happy. I took all the other drugs for lupus, but prednisone was my happy drug and my down fall at the same time. It gave me energy, but I was unable to fall asleep. It helped me eat, but I gained so much weight. I started to lose my hair. Now, prednisone has taken my hips from me. My happy drug is no longer my happy drug.
As of right now, my future with lupus is unsure. Having this disease has changed my life for better and worse. I'm only 26 but what is so funny is I call lupus an old people's disease because at 26, I feel like I'm 50. I have already had about three surgeries and now I might need both hips replaced. I look normal but feel awful and tired. It's like pulling teeth just to get out the bed but I do because I want to have a future. My future is to help people with my disease and help people understand lupus anyway possible.