I was a colicky baby. I've had headaches all my life. Some of my earliest memories are of
drinking aspirin-laced coke. My mom dragged me to specialists because I got headaches so much. I heard Elvis had died while I was laying on my
bed reading on a perfect August day because the sun was too much. I had trouble in PE, as a majorette, and band for the same reason. Parades wore me out.
In my
early 20s, I had trouble with my fingers. My doctor did tests, but the symptom
went away and I went off to Japan. Looking back, it was in Japan when the trouble returned. It wasn’t
the sun, because I had good sunscreen. It was the humidity and the heat. I remember
being in karate class just emptied of all energy. It was excruciating. I had to
quit. Later, I began to get the kind of headaches I get now in the sun. I lose all my energy on a hot and humid day. I joke that I'm a delicate flower. Except it's not a joke.
I came back to the US to finish my Bachelor’s degree. It was
in my fourth and fifth quarters that my hands started swelling up like
sausages. It took a hot shower and sometimes more than that before I could straighten
them – with or without pain. It was weird. Soon, other joints became
troublemakers. Before I knew it I was in pain all the time, had a hard time
getting out of bed, and wanted nothing more out of life than to sleep.
I went back to the doctor, who referred me to a rheumatologist.
That is how I met Dr. Spiegel. He was awesome. Told me it was probably one of
three things: scleroderma, rheumatoid arthritis, or lupus. There is no downer like being told you'll have to live with some illness for the rest of your life. He told me as a
student, he knew I’d research all three. Then he told me to come back in six weeks
because he had a hunch I’d be feeling worse. Um, thanks? In six weeks I felt
better. The next summer, the year I turned 30, everything went downhill. I spent
two weeks in a fever I couldn’t get rid of. My leg kept swelling and I had
trouble walking. Finally, early in 1995 I walked into Spiegel’s office and
begged for help. That’s how I met prednisone.
I lived in Santa Barbara and it rained so much that night
that the entire city was flooded. When I woke up my first thought was, “I need
to buy an umbrella.” It was my first pain-free morning in a long time, a
miracle. Well, it felt like a miracle to me. I could walk, I could move, I could
work without feeling horrible. Sadly, prednisone eats your bones and so I couldn’t
take it forever. If I was an addict, prednisone would be my drug of choice.
Dr. Spiegel was correct. I did my research. For the two years
following my initial appointment, I had panic attacks at the grocery store so
bad I had to leave my cart there and go home without groceries. I could not
stand one more minute in the fluorescent lights. I had panic attacks in the
sun. I had headaches from the sun. I never felt right in the sun. Are you sensing
a theme? I suspected I had lupus because of the light sensitivity and he
agreed, but would not diagnose it for insurance reasons. I wasn’t officially
diagnosed until 2010, at the University of Chicago, DCAM. I had gone there for
refills on meds and when I told the doctor I had lupus, she asked what made me
think so. I gave her my
patient file from Dr. Spiegel. They confirmed it. By then, it was obvious from
my blood tests, though not from my health.
I now live in Cleveland, OH; home of the Indians, the Cavs, the
Factory of Sadness (Brown’s Stadium) and the Rock and Roll Hall of Fame. I am
one of the lucky few. Lupus has never attacked my organs. It’s my skin that
gets the brunt of it. This allows me to “pass,” but not for long. I wilt even
with meds and super awesome sunscreen. For a sick person, I’m extraordinarily
healthy. But, I have a disability that rules my life. The passive oppression of
chronic illness can be as devastating as active oppression from others. As I write this, I am having to miss
marching with others against 45’s policies in Public Square.
