Lupus Health Center

Living With Lupus: Lenaki's Story

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 physically sick.

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 drugs.

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 morning.

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.

Today, I do up to 15,000 meters -- between eight and nine miles -- in a row. My doctor changed his mind; now he encourages his other patients to exercise.

Rowing gives me self-worth. I feel I have some control over my disease and my life, which is very important for fighting lupus. I get such a positive feeling, and even on days when I'm tired and think I can't even pull on an oar, I'll go out and do it, and the satisfaction is wonderful.

Originally published in the March/April 2008 issue ofWebMD the Magazine.