Hey everyone I'm a new member
My names Kathleen (or Kat) and I'm 19 years old. I was diagnosed with systemic lupus June 30, 2008 when I was 18. I had been suffering from significant joint pain and inflammation along with fatigue. Lupus prevented me from playing softball (my life) my senior season because of the symptoms and the doctor I had been seeing had overlooked it. I then went to a doctors appointment at Brigham and Women's Hospital in boston where I saw Dr. Austen (such an amazing guy). He first diagnosed me with polyarthritis and then said that I might have rheumatoid arthritis, writers disease, or lupus. He put me on prednisone. My next appointment confirmed that it was indeed lupus and thats when i began plaquenil.
I must admit that the beginning was probably one of the toughest roads I have ever been down. I didn't want to talk to anyone about it and felt so alone...for the first time in my life I truly had an understanding of what being petrified meant. I didn't tell my best friends until two weeks after my diagnosis because I did not want to be treated differently or judged (I told them because they thought I had been blowing them off when in fact I was sick in bed because of the plaquenil). On August 22nd I had my appointment to see whether or not I would be in remission....I had improved a great deal but unfortunately I wasnt at that stage in recovery. This brought up the huge question of whether or not I would attend college this fall...well me being me I was like "of course I will!"
Adapting to college life itself is hard enough but I've learned that it's even harder when you have an autoimmune disease. The fatigue I experienced (and still sometimes experience) is so intense...especially factoring in pulling all-nighters for exams and papers along with trying to maintain a social life. I was frustrated with the fact that I had begun playing rugby but then couldn't continue because of the symptoms (I am aiming to play in the spring season though!) My current obstacle is running. I have always been a fanatic of going for runs however my legs don't seem to want to cooperate so I'm going to try biking and the elliptical. It was hard to open up to my new friends about my disease but then I began noticing that talking about it became easier. I have several friends now who are very supportive. It's still tough because they don't know exactly what I'm going through but my faith has truly become a guiding light in my life.
This Friday (November 7th) I have another appointment to see whether or not I'm in remission. The good news is I recently lowered my prednisone dosage on October 17th and have not had any pain or fatigue. Also, when I asked my doctor whether or not I should have bloodwork prior to my appt. he said no.
I'm really glad that I was emotionally ready to join a support group. I have to say that I have always wanted to ever since I was diagnosed but I just wasn't ready. I'm really eager to meet anyone who can relate so please don't hesitate to talk!