My Lupus Story

My first symptoms were at age 19: my face swelled, my lymph nodes in my neck were swollen and my eyes were almost swollen shut. The fatigue felt like I was waist high walking through mud. At the time, I was in college and transitioning to live on my own. My Mom drove me to the doctor, and they did all the things- blood work, physical exam and declared that I had Mononucleosis. The Mono test was negative but my white blood cells were extremely high, so he believed it was Mono. Instead of joining my friends at the beach for Spring Break, I stayed home and slept. I felt good after the rest. I continued to Work 3 jobs and study for my degree. Then a year later, I was taking a strength training class, and my professor noticed me reducing my weights instead of increasing them. He also noticed I had lost a great deal of weight; He told me I could not come back to class until I had a doctor’s note. Dang, I did not realize anyone noticed my fatigue. Weighing 102 I went to the doctor to get the required dr. note. The doctor did an exam. I was sore to the touch and was exhausted. He asked about my schedule. I explained my 3 jobs and going to school full time. As I was telling him about my schedule and fatigue, I broke down sobbing. He looked me in the eye and told me he was putting in a consultation to psyche. Not liking his response, I told him I wanted him to take all the blood he could. He also wanted me to take 72 hours and rest. Off to the lab I went. Since I usually passed out every time I gave blood, I  was not looking forward to the poke, but knew I had no other choice. When I got to my apartment my roommate was waiting to tell me a doctor from the hospital called and I needed to call her back. I was alarmed to hear someone had called; this person was not who I saw. I phoned and the doctor told me that Walter Reed was visiting the lab and picked up my blood to view and there was an abnormality with it; I needed to come in and see her as soon as possible. So, I called my boyfriend crying and he picked me up immediately and took me to the hospital. I met a new doctor, a rheumatologist. She said my platelets were low and I had to be admitted to the hospital. Now, I am a 20 year old, alone at the army hospital;, my parents live in another state, I had my own room. They did tons of tests, including my first bone marrow biopsy and put me on massive dose of prednisone. I was eventually discharged with Lupus and given a recommendation for a rheumatologist to follow outside of the army base. I did feel better, my parents had me see another specialist to confirm my diagnosis and my Lupus journey began.

I am so thankful for the visit from Walter Reed, thank God they picked my blood. I knew I was sick and was just not listening to my body for a year; I realized how lucky I was. Many chronically ill people with Lupus take up to five years to be diagnosed. I got along well with my new Rheumatologist, and we started a young adult support group. We had fabulous speakers, and I spoke at business meetings and was featured on a fund-raising tv marathon for the arthritis foundation. My life had some setbacks, but I was able to finish my degree, a little later than expected, took only over the counter medications, went to graduate school and married my boyfriend who brought me to my first frightening appointment and hospital stay.