Yvonne's Story

While growing up I was a very energetic and athletic girl. I was always outside running around or playing sports. My mom could never get me to sit inside or take a nap. My favorite sport was softball and I played it as much as I could. When I was 13 I started to notice some chronic pain. It became so bad during the next year that I could barely walk in the morning or even get out of bed. I was the type of child who didn't run to my parents when I got hurt. So, I didn't complain when I started to get this extreme pain.

I continued to play softball and stay very active while taking Aleve to try and manage the pain. When I was 14 and in my freshman year of high school a small growth developed on the back of each wrist. I went in to get them checked out and the doctor said they were cysts. He removed them and sent the tissue in for testing. He told me there was a trace of Rheumatoid Factor in the tissue but insisted I was too young to have Rheumatoid Arthritis. So, I continued on with my daily routine. Softball became harder and harder to play but I didn't want to give it up so I played through the pain. Later on in that year I broke down and told my mom I just couldn't deal with the pain anymore and so we went to our family doctor. It was very hard for me to tell him how much pain I was in because I was so young and scared about what was going on.

My family doctor had me go see a Rheumatologist and I was then diagnosed with Rheumatoid Arthritis at the age of 15. I then went through a series of different kinds of medications to figure out what worked the best for the pain and inflammation. I was still in a lot of pain and we couldn't find a drug that truly worked for me. When I was 17 and in the fall of my senior year my doctor wanted to try a new pain medication that I would inject into my thigh once a week. My Rheumatologist sent me in for more testing before starting this new medication. She called me hours before I was supposed to get my first injection. She told me I wouldn't be able to take that medication because of the results of the test. I found out later that day that the tests she ran showed I had Systemic Lupus Erythematosus. I had no idea what that was. I remember asking a lot of questions and doing research about lupus and what was going to happen to me.

I continued playing softball my senior year but definitely lost some athletic ability and strength over the last few years of high school. I went on to college in Green Bay and tried to live a normal life. I got involved with programs on campus and got a job with the school's volleyball team. Up to that point in my life I had not had any serious problems with lupus other than the Rheumatoid Arthritis and the typical headaches and tiredness. When I started my 4th year of college I had my first big flare which affected my central nervous system. I became very emotional and depressed. Out of nowhere I went from being my normal happy self, to someone who was sad and not motivated. I became paranoid that the people around me were talking about me and didn't like me. I had to go to a psychiatrist and was put on medication to stabilize my emotions. This was a scary time because I felt like I had no control. Eventually I was able to manage my emotions without medication.

During My 5th and final year of school I was hospitalized for a week with extremely high calcium levels. After various tests and seeing medical specialists, the doctors still couldn't figure out what was wrong. Most likely this was a problem caused by Lupus but the symptoms vary so widely in Lupus patients that we aren't sure why it happened.

During this difficult time in my life an acquaintance, who also has Lupus, told me about a Lupus support group in Appleton. I was really nervous to go because at this point I only really talked about it with a couple of close friends and family. I started to go once a month and eventually became more comfortable talking about what I was going through. It was nice to be with people that understood what I was going through because they have gone through it as well.

I am turning 25 this March and my everyday life is still affected by lupus. I am thankful for my friends and family as well as the members of my lupus support group. By going to the support group I have become more confident in myself. I know that there are many obstacles coming at me in the future but I know I have the strength to get through it.