Living with lupus: Maria's story

Twenty four years ago, not long after leaving home for my freshman year of college, I began experiencing a laundry list of baffling symptoms. Every week something was wrong; joint pain, rash, headache, weight loss - my parents thought I was a hypochondriac. When I came home on break, I was still sick. Then one morning I awoke to find I couldn't move; my whole body was stiff. My doctor admitted me to the hospital, thinking I had poly-arthritis, but several days and numerous tests later, I was diagnosed with systemic lupus erythematosus (SLE), most commonly referred to simply as lupus. When my doctor told me I had lupus, I told him, "Okay, fix it." He told me it could be controlled, but not cured. The worst blow came, though, when I asked whether I might die and the doctor told me that, yes, it was possible.

I was very lucky to have a doctor who knew to look for something unusual and who knew it was something he couldn't handle. Back then much less was known about lupus than is known today. My doctor referred me to a rheumatologist, Dr. Thomas Kantor, who admitted me to NYU hospital where I spent the next several weeks undergoing tests including kidney biopsies and bone scans. Treatment followed. I was given massive doses of prednisone, a steroid, and Imuran which, at the time, was experimental, but without which I wasn't expected to last more than six months. I lost a tremendous amount of weight and the prednisone caused my face to puff up.

Once I was home again, the medication began taking a toll on my body. My hair fell out and my body blew up like a balloon. My dosage included twelve pills in the morning and additional ones throughout the day. To reduce the side effects of my medication I had to take even more medications. Finally, when I was 20, my lupus went into remission. I went back to college and, although I wasn't completely off the medication for about a year and still required close monitoring, I began to feel whole again. Eventually my mother and I opened a dress shop and I fell in love and got married.

When I was twenty-eight and a newlywed of six months, my husband Ralph and I went out to celebrate on New Year's Eve. At the restaurant, I noticed my feet were swollen. My remission had ended. I had lupus nephritis - my kidneys were involved. Another, briefer, hospital stay was followed by weekly doctor appointments and tons of pills. Finally, after a year, my doctor began to again wean me off my medications. Although many doctors discourage women with lupus from becoming pregnant, Dr. Kantor, seeing how badly I wanted children, encouraged me to go ahead. My husband and parents were concerned that the stress of pregnancy would result in another lupus flare, but my pregnancy resulted, joyfully, in the births of full-term twin girls. Three years later, my husband and I welcomed our son into the family. I always felt the pregnancies would be okay. Others were afraid my pregnancies would be difficult, but they were wonderful. The births of my children were my happiest moments.

Sadly, my husband died of a ruptured brain aneurysm in January 1998, leaving me to raise our children, then 11 and 8. When Ralph died, the doctor upped my medications for several months to ward off a potential stress-induced flare and checked me monthly for nearly a year. I now see him every three months. Since my diagnosis, I've enjoyed tremendous support from my family. I've decided that, while I may have lupus, it doesn't have me. My parents and family have been with me every step of the way; they've been my greatest source of support. My dad was in the medical field so my parents gathered all the information available at the time of my diagnosis. I firmly believe that being well-informed and maintaining a positive attitude helps. My doctors have always involved me in pretty much every decision. Never once, even when I was younger, did I not know everything that was going on every step of the way. I'm the type that needs to know everything. It makes me feel more in control.

Choose your doctors and your care. Become knowledgeable about the disease and your medications. Learn your family history. It's your body - you're in control. I haven't felt the need to look into alternative therapies - things are going pretty well - but I might if the lupus becomes truly horrible. I live daily with the side effects of my medications including painful bursitis. I'm getting a lot of dental work done because one of my medications has caused bone loss in my jaw. I have stomach problems and I know the time isn't far off when both of my hips will have to be replaced because of damage caused by prolonged steroid use. With the exception of a few small flares with no kidney involvement, I have been in remission since I was thirty. Now, at age forty-two, I work full-time in marketing for an assisted living facility. I helped run a lupus support group at the facility where I work, and attend school programs and my children's sporting events. I have had to make adjustments. Once an avid sun worshipper, I no longer go to the beach because I can't be out in the sun. I am learning to relax although I find it difficult, and to get plenty of sleep. I exercise regularly, but I know my limits.

My lupus sometimes affects my kids because there are things I can't do. All-day trips, for example, are too wearying. I can't take them to the beach. But I've found there's always something else to fill the space left by the things you can no longer do. I do wish I had known, when I was diagnosed, that there is so much hope for people with this disease; that you can lead a normal life. I wish I had known more about the disease and its symptoms. The educational materials available from the Lupus Foundation are very good. There's so much more information out there now than there was when I was diagnosed. I have a favorite quote hanging on my refrigerator. It says something like "God never promised that life would be easy, just that He would be there walking with us along the peaks and through the valleys". When I was first discharged from the hospital after being diagnosed with lupus I felt awful and my prognosis was uncertain. I was in a valley. My father picked me up to take me home, and he asked me then what I most wanted to do. I told him I wanted to go to the jewelry store and buy a bracelet to replace my hospital bracelet. He was somewhat apprehensive because I could hardly walk and parking on New York City's Canal Street was difficult. So we made a deal. We wouldn't shop unless we could get a parking space in front of the store. God was with me. We found a space right outside the door. There have been a lot of peaks and valleys since then, but that bracelet is still on my wrist - a reminder of my journey and all those who have traveled it with me.