My name is Megan. I am 19 years old and have Lupus(SLE). I currently attend Elizabethtown College in Elizabethtown, PA. I went to high school in Lebanon, PA. I was a three sport athlete in high school. One day I was playing softball and went to throw the ball and realized I couldn't move my hand or my fingers. I looked down and couldn't see the bones in my hands, wrist, or forearm. My arm was swollen twice the size of my other arm. I immediately went to my athletic trainer. I had tons of pain in my elbow but I didn't do anything to cause it. It just all of the sudden hurt. From there I was sent to an orthopedic surgeon. He did blood work and told me I had Juvenile Rheumatoid Arthritis. Looking back into my family history, my great grandmother had Rheumatoid Arthritis. I was sent to a Pediatric Rheumatologist and was seen frequently to monitor the condition. This disease made it difficult to play sports because I was always swelling up in random joints and would wake up every morning very stiff and in pain. The winter was the worst time because the cold made my joints very stiff and achy for no reason. Nothing I did seemed to make it any better. I kept up with my medicine the doctors put me on and just hoped it would get better.
Years went on and during the winter of my senior year of high school things started to go downhill. I would wake up in the middle of the night not being able to move my arms or legs. My hands would be clenched shut I would have to pry them open using my nose and chin. Every morning was a painful mess. I kept doing what the doctor told me to do and we tried some new medicines. Nothing seemed to be working.
The summer after I graduated college, things started to go further downhill. I would develop rashes everywhere on my body. The rashes would show up and disappear in the same day or stay there for a week or two. Each rash would look different and would show up randomly. With the heat, my skin was so itchy and irritating, I would have to spend days inside on ice just to numb my skin so I could get some amount of relief. When the rashes got really bad I would end up tearing my skin up so bad. The doctors would get more concerned and confused at the same time. Medicine after medicine after medicine and nothing was helping.
Once I turned 18, I had to leave Pediatric Rheumatology and go to an adult Rheumatologist who could better help my needs. He reviewed my chart and became immediately concerned. He had some answers for me. He did some blood work and tests and found out my symptoms fit perfectly with Lupus(SLE). Lupus is a disease that affects the immune system. It means the immune system is hyper-active and along with attacking the bad cells and bacteria in your body, it attacks the good bacteria, your cells, tissues and organs. Your immune doesn't recognize the difference between good cells and bad cells. So he put me on a medicine called Methotrexate which I would inject every week. He put me on another medicine that was supposed to help my skin rashes. Methotrexate is an immune suppressant and a form of kimo therapy for some cancer patients. As time went on I started to feel better. My weekly blood tests looked good, so we upped the dosage. After a few months I was up to a very high dosage of this medicine.
Now I was starting college. I was excited but a little nervous at the same time. It was coming into winter time and all of a sudden I got really sick. I had a high fever, a sore throat, trouble breathing and a rash. I immediately called the doctor and got an appointment. After a blood work and x-rays he told me I had pneumonia. So I spent the week at home and on medicines. Because I was on Methotrexate, which weakens my immune system, I had to stop taking that medicine for the week I had pneumonia so my body could recover. In doing so my immune system will start attacking again. It helps kill the pneumonia and fight it, but in return, all my symptoms come back and I am at risk of my immune system attacking my organs again.
Once I got over the pneumonia I was better again. I wasn't in as much pain, didn't have rashes flare up as much and could wake up in the morning and function normally. Later in the winter around Christmas time, I got sick again. This time I ended up with a fever of 104 for two nights. I had to go into the hospital and make sure I didn't have meningitis since I was at such a risk of many infections. They had to do a spinal tap to check for that. I ended up just having pneumonia again. So I take another week and recover from that.
Later in the year around March, I caught pneumonia and a tonsil infection. This was the third time I got pneumonia in less than 6 months. Another week of missing classes and school and more medications. Still trying to figure out how to manage Lupus and be a college student at the same time.
