I had always been an athletic, healthy person, but in my late 30s my body
started sending signals that something was wrong. I was tired all the time. I
had no energy. I even started losing my hair.
When I went to my doctor, the staff ran blood tests, but nothing ever
pointed to a specific diagnosis. I lost weight. I couldn't keep food
down. I developed a butterfly-shaped rash on my face. I saw other doctors; they
thought it was all in my head, and, for a time, they didn't believe I was
Amanda Greene, 43, stashes a tube of sunscreen in her purse and car so that she can reapply it throughout the day -- as frequently as some women touch up their makeup. Using sun protection is second nature for Greene, who was diagnosed with lupus (SLE) at 15 and is photosensitive.
"I use it from head to toe 365 days a year, whether it's gray or sunny," says Greene, a Los Angeles lupus advocate. "Some women reapply lipstick -- I reapply my SPF. It's part of living with lupus."
Women who have lupus...
It was 1992 and the Internet was in its infancy, so I went to the library
instead. I was very active in trying to figure out the problem, very vocal, and
very angry -- whatever was wrong was interfering with my life. I was 39 years
old, I had a 3-year-old son, a husband, a home, and a full-time job as a nurse,
and I had doctors telling me they didn't know why I was ill.
It took two years and four hospitalizations before my doctors figured out
that I had lupus: a chronic autoimmune
disease that causes inflammation, then swelling and pain (episodes are called
"flares"), and eventually tissue damage throughout the body. I was
relieved -- but also scared -- to finally know what was wrong.
You don't take a water pistol to a gunfight, so once diagnosed, I began
seeing a specialist, a rheumatologist who prescribed some pretty powerful
After my symptoms were under control, we backed down on the medication. I
also made some major life changes: I started exercising again, ate more healthy
foods, and tapped into my network of friends for support. (My husband and I
decided to part, as well.)
Now when I have a flare, I bounce back so fast. I discovered that exercise
-- rowing especially -- is an important ingredient in keeping me healthy.
There's just something about being in a boat and going out early in the
At first my rheumatologist wasn't too happy I was doing it. He thought
rowing would be too much stress on my system, so I
decided to prove him wrong.