After having lupus for so many years, many of us look back at our lives trying to figure out when the symptoms began. For me, my first flare was at age 9.
It was a few month into the fifth grade. (I skipped a grade; it made me younger than the other students) This was a very important year for the students at my school. A week long field trip was planned, three hours away from home, and away from our parents. We’d stay at a summer camp that was closed after the season. This was a rite of passage for us. My grade was loaded on buses and off we went to camp. Just two days into the trip, I started experiencing a lot of pain in my left knee. The ground wasn’t paved and was hilly and I just thought I twisted it. The next day the pain worsened and I could barely walk. Fortunately, one of the parents was heading home that day so I left with him.
When I arrived home, my aunt rushed me to a clinic to have my knee examined. By then my knee was extremely painful and the other one was beginning to hurt. The clinic visit left us with more questions than answers. They took a lot of blood and ran tons of tests to get to the bottom of things. I went home and was still in a lot of pain. There aren’t a lot of things they give to children for pain from an unknown source.
My dad then began shuffling me from doctor to doctor. They thought I might have had scarlet fever or juvenile arthritis, and never brought up lupus. It was 1988 and I was a 9 year old child, who would think lupus? One of the specialists I saw told my dad to give me aspirin for the pain. The original dose made no difference, so he increased, and increased, and increased the amount I was to be given.
At this point, it was 3 weeks since my pain began and I’d lost a good amount of weight. . My days were spent on the couch too ill to attend school. Then I started vomiting and was admitted to the hospital. My illness was still unknown and now I was experiencing another symptom. Petrified, as it was my first stay in a hospital, I begged my dad not to leave me. He spent the night in the most uncomfortable chair, by my side. I was only in the hospital for a few days, but it seemed like forever. When I left they still didn’t have a clue about my joint pain. As for the vomiting, it turned out that a child is never supposed to take the amount of aspirin I was prescribed.
The visits to specialists continued. They all ran blood tests, examined me, but still couldn’t arrive at a diagnoses. Finally I was scheduled to see one of the best specialists in the country, luckily located in our metro area.
While waiting for my appointment, the pain receded and I began to feel better. I did keep my appointment with the doctor, but my symptoms were all but gone. My father was told that it must have been a passing virus, in other words, “We don’t know.”
After recovering from the virus, my childhood continued. I completely forgot about the incident until at 19, I became ill again. Luckily, I had enough symptoms for the doctors to consider lupus. My dad reminded me about being sick at 9 and how it was 10 years to the month from what I now believe was my original lupus flare. My first flare contained many of the symptoms that I have now: joint pain, fatigue, and weight loss. They say lupus mainly affects women of childbearing years. My period started at age 10. I’m not a doctor, but I do know my body and how lupus likes to treat it. At age 9, that undiagnosed virus was my first encounter with lupus.
Mission Accomplished: Spreading Lupus Awareness by sharing my story