My name is Marisol Caswell. I'm 34, I live in San Antonio, Texas, with my husband Neto and our daughter Paloma, who is nine and runs this house. I was a receptionist at a dental office for eleven years and now I go in three mornings a week, which is what my body lets me do. I have systemic lupus erythematosus. Most people just say lupus, and most people I tell say "what's that?"

I made this page because when I was diagnosed I went looking for somebody like me on the Internet and mostly found medical pages that scared me half to death. I wanted to find a regular person who said "this is hard, and I'm still here, and I still go to Paloma's softball games." So this is that page. I'm not a doctor. I'm a person with lupus who reads a lot.

My story

For about three years before anybody said the word lupus, I was just tired. Not regular tired. Tired like somebody unplugged me. My hands and knees ached in the mornings, I ran low fevers for no reason, I got sores in my mouth, and my hair came out in the shower. I went to three doctors. One said stress. One said I was a young mom and young moms are tired. One gave me something for depression, which I did not have, although I was starting to.

In the summer of 1996 we spent a Saturday at Canyon Lake and the next morning I had a red rash across my cheeks and nose, in that shape everybody with lupus knows. It's called the butterfly rash, and that's where this page gets its name. We had just changed insurance, and my new family doctor looked at it, asked me about the tiredness and the joints, and ordered a blood test called an ANA. It came back positive, and she sent me to a rheumatologist.

On October 15, 1996, the rheumatologist sat down with me and Neto and told us I had lupus. I cried in the car for twenty minutes. Some of it was fear. A lot of it was relief, because I wasn't crazy and I wasn't lazy. It had a name.

What is lupus? (the short version)

Lupus is an autoimmune disease. Your immune system is supposed to fight germs, and with lupus it gets confused and goes after your own body too: joints, skin, kidneys, blood, heart, lungs, brain. It's different in every person, which is part of why it's so hard to diagnose. It comes and goes. A bad stretch is called a flare, and a quiet stretch is called remission.

• About nine out of ten people with lupus are women, and most of us find out between our teens and our forties.
• It's more common in African American, Latina, Asian and Native American women.
• It is not contagious. You can't catch it from me. It's not cancer and it's not related to AIDS, which somebody at church actually asked me.
• There are a few kinds. Systemic lupus is the one I have. Discoid lupus mostly stays in the skin. Some medicines can cause a lupus-like illness that usually goes away when the medicine is stopped.
• There's no single test. My rheumatologist explained that doctors look at a list of eleven signs, blood tests and symptoms together, and most people with lupus have at least four of them.
• There's no cure yet, but it can be treated and most of us live full lives. That last part is the part I needed to hear.

What helps me

This is what works for ME. Every body with lupus is different, so please talk to your own doctor before you change anything.

• A rheumatologist I trust. I bring a written list to every appointment because my memory is not what it was.
• Plaquenil. It's an old malaria medicine that a lot of lupus patients take. It took a few months before I noticed a difference. I get my eyes checked once a year because my doctor wants that for everyone on it.
• Prednisone during flares. It works, and I hate it. Round face, hungry all the time, up at 3 a.m. cleaning the kitchen. My doctor told me never to stop it or change it on my own, and I pass that along to everybody.
• Staying out of the sun. Sun sets me off. I wear sunscreen every day, long sleeves and the biggest straw hat in Bexar County. Paloma says I look like a mushroom. That's fine.
• Rest before I need it. I used to push until I crashed. Now I lie down at 2 o'clock whether I feel like it or not.
• Saying no. Still working on this one.
• My support group at the hospital, second Thursday of the month. I didn't want to go. Now I'm the one who brings the pan dulce.

Please don't say...

I know people mean well. But in case your friends need a hint, print this out:

Where to find help

• The Lupus Foundation of America. They have chapters in a lot of cities, with booklets, meetings and support groups. Look them up in the phone book or ask your rheumatologist's office.
• The Arthritis Foundation. They cover lupus too and have good free pamphlets.
• The Lupus Book by Dr. Daniel J. Wallace. This is the one book I tell everybody to get. It's written for patients and it's honest without being scary.
• Your hospital. Ask if there's a lupus or chronic illness support group. There usually is, and nobody tells you.
• Me. I'm not an expert but I'm a good listener. [email protected]. I answer everybody, it just might take me a few days if I'm flaring.

Write to me!