LUPUS. What a long, strange trip it's been! The first time I heard the word Lupus was in 1987. I was 22 years old and taking three allergy shots twice a week, in an effort to get control of my asthma-causing allergies. One day I just happened to mention to my allergist the amount of pain I was suffering. I've had pain since I was a child and just assumed it was 'normal'. But, this day, it caught the attention of my allergist and he suggested running a panel of lab tests.

At my follow-up appointment, I was stunned to learn that some of the testing had come back 'positive', in particular the ANA (antinuclear antibody). The doctor said to me 'I think you may have Lupus.' Well, that just about floored me! The only person I had ever known with Lupus, a schoolmate's mother, had died young and suddenly!

This revelation started me on a path looking for the 'right' doctor with the 'right' answers and the 'magic cure'. Consequent tests all proved 'negative' and the diagnosis was different with each doctor. I've heard everything from MS to fibromyalgia to depression to brain tumor!

Upon introduction to my local Lupus support group, I learned I was not alone in my symptoms. Here there were actually people who felt just like me - young and old. My current physician was a speaker at that first meeting. When I mentioned my symptoms to her, she was not at all surprised. It would still be several years of bouncing around from doctor to doctor before tests, symptoms and criteria confirmed Lupus.

Looking back to my adolescence, it is obvious now that Lupus may very well have been lurking in the shadows. The sudden and dramatic weight loss in high school after prolonged exposure to the sun. The days in bed, too weak to function, but not really 'sick'. The intense and unexplainable raised sunburn - I'd always been a tan sunbather before. And then there was always the rash on my face, looking more like 'too much sun' rather than a 'rash'.

As the illness progressed, my social life plummeted. I felt that nobody would want to saddle themselves with a sick partner. I also found that people I thought were my friends quickly vanished when the going got rough. Boy, you sure find out fast who your true friends are in the face of illness.

Any idea of career aspirations suffered, too. Too sick to work full-time any longer in 1992, I worked part-time at the local hospital in data processing/reimbursement. September 1998 saw the end of my working life when I had to resort to disability in order to preserve what "energy" I had left.

I am currently on medication and disability in an effort to get the Lupus to 'back-off'. Lupus has affected my central nervous system, making it difficult to function 'normally' most days. Memory loss, headaches, irrational behavior, visual disturbances, increased intracranial pressure, neuropathy, and confusion are just a few of the symptoms I experience, along with the usual fatigue and pain of Lupus. Not to mention the affect the medications have - that’s a whole other ball of wax! Nonetheless, I have hope for a cure in the future and, for myself, a return to better days.

A final word: I believe that two things are important in the treatment of Lupus. First, listen to your body. You're the one living in it and you're the one most likely to know if something isn't right. Second, find a good physician. One who is knowledgeable about lupus and other immune disorders. One you can talk freely to and who isn't afraid to investigate every avenue to help you.

- Julie, California

I think the first time I had a thought that something more was going on with me was at age 16 when I was hit by two cars at the same time walking to school. I knew that I had Rheumatoid Arthritis, but it was so mild I could still do all the fun things in high school that I enjoyed, like being on the girls baseball, basketball and swim teams. After my bout with the cars, I just couldn't get over the extreme fatigue and exhaustion. I was only 16 years old!!! How could this be?

I did recover from being hit by the cars and I went on with my life. I couldn't play sports anymore because I was in a back brace for 2 1/2 years. I had a good life now and I was getting married right out of high school.

Then I got a phone call from my doctor saying he needed to talk with me about my blood work, to please come in and see him. My mom and I went to see him and I was told that I had a false positive test for syphilis. I knew I couldn't have syphilis, if you know what I mean (lol). I was told that another test, according to law, had to be done along with many other tests because something was going on. The test never showed anything. I was told that I had so many blood disorders and felt that I wanted to call off our wedding. I thought I was dying and I sure didn't want to marry someone and then just die on them. After many tests and no answers, I just went on with my life, was married to a wonderful man (I still am!) and together we had a beautiful daughter.

About 10 years ago, I became ill again - this time it was bad. I had just started a new job at a doctor's office and had lots of stress. One Christmas Eve morning, I woke up and my whole body was killing me. It wasn't the pain from having RA, this was different - I couldn't move without crying! But I got myself up and made it to work. Even though it was a half-day, it was so painful for me, but I made it through the day. By the time I got home my legs and hands were 3 times the size they should have been! Now being as it was Christmas, there were no doctors around (of course). And I had about 15 people coming to my house for dinner and I couldn't walk! We had to move the dinner to my mom's.

I lost my job because I couldn't go back to work after Christmas. My regular doctor just kept saying it was the RA, but I knew it wasn't. I spent the next 2 months in bed. I couldn't move without so much pain. After so much time and pain I told my Doctor something more had to be done. He sent me to a Rheumatologist. I had always seen my doctor for my RA so this was new to me. As I went into his office and sat down with my husband I saw a big sign on his wall that said 'LUPUS.' I didn't know what that was but I told my husband 'That's what I have.' I still to this day do not know how I knew, but I did. Two weeks later, my new doctor called me and told me that I had LUPUS.

After fighting many battles with LUPUS over the last 10 years, in my heart I feel I am still going to beat this thing someday. I won't give up - I can't let it win! I am in a wheelchair and can sometimes use a walker to get around. But I am still here! And I'm fighting all the way! LUPUS has changed my life forever, but it hasn't won!

- Linda, California

I was first diagnosed with Lupus 8 years ago. My story is like many others with this disease. All my life I was ill with pneumonia, infections and such. I remember being told I had "growing pains" with joints so painful I could not walk. Playing outside was torture for me as I always got sick and my rashes were just attributed to an allergy. Sound familiar?

When I was 16, I woke up one morning and my legs were the size of tree stumps. After going to the doctor and many blood tests later, I was diagnosed with Rheumatic Fever, never testing for Lupus. I spent the next six months in bed sleeping and taking aspirin since at the time, it was the only thing available.

I graduated high school at a young age and married when I was 17. Before I got married, the blood test showed syphilis. Well, you can only imagine what that did to me. After being tested again, and my husband's test being normal, it turned out to be false/positive. Wheew.... another obstacle. We started our family right away and would have been blessed with five children if it weren't for the miscarriages that I had. We did have two beautiful children though. After giving birth though, I was riddled with all types of complications. Bleeding, infections, surgeries and the list goes on. This went on for twenty years and never was I tested for lupus.

In 1993, my husband and I were on a camping trip. I woke up the morning that we were to leave and I was swollen all over. I looked like the Pillsbury Dough Boy, in pain and oh-so sick. The next day I went to the doctor and I was tested for Lyme Disease, which came back negative, but I did have a positive Rh factor (rheumatoid) and a positive ANA. I got the news within a week that I had Lupus. Well, I finally got all of my life long questions answered. I am one of the many people today with Lupus that was misdiagnosed for years and years.

Finally, having a name to the disease and rationalizing all that has gone on in my life, I realized that I needed to learn all I could about the disease. I was on a mission from God...lol. I went to support groups, conferences and joined an on-line support group and this has been my salvation. Although my friends and family know what I have, it is still difficult for them to know what someone goes through with this disease. Learning how to cope with never being able to make plans because you never know from one day to the next how you will feel was the hardest part of this disease. It felt like speeding along at 100 mph and running smack into a brick wall.

I don't want you to feel all gloom and doom. I have learned to adjust my life to my limitations and I am optimistic. On my good days, I live to the fullest. On my bad days, I "listen" to my body and most importantly I take care of me.

- Karin, California

Aloha, my name is Karen and I am 40 years old and have recently been diagnosed with lupus. As with many others who have lupus, I have gone through many doctors, many diagnoses and much confusion. I now believe that I have had lupus since I was about twelve years old.

I have always had the red face rash, fatigue, pain in joints, migraines, confusion and a variety of other symptoms. I have been told I was lazy, making things up, trying to get attention and other hurtful things. As a young child I was molested and told the same things when I tried to tell. So in keeping with my family's dysfunctional way of "dealing" with things, I was made to feel responsible for these bouts. I grew up believing that they, along with many other things, were all in my head.

I was finally taken to a doctor at fifteen because of painful cramping and fatique before my period, which caused me to miss school. The doctor confirmed my family's "diagnoses" and also told them that I tested positive for syphillis. I was ordered to be seen by a psychologist. This psychologist decided I should be placed in foster care. I was "shelved" there and forgotten. (I now believe that it was a false/positive syphillis test, but I was given the drugs anyway.)

At this time I started to use illegal drugs to try to cope with my many symptoms. At the age of twenty-one I quit doing drugs and set out to find a doctor who would listen to me. About this time I also got married and had a child. After giving birth I was thrown into a tale-spin of symptoms ranging from fatigue, rash, extreme pain in my back and legs, mastitis, extreme confusion and depression. My OB/GYN diagnosed me with post-partum depression. And once more I was referred to a psychologist.

Since then I have made my rounds with psychologists, psychiatrist, internist, dermatologist, you name it. They have basically all told me that everything was in my head. I have pointed out to them that I have started a business and have ran it quite successfully so I must have some sense!

Five years ago I was denied life insurance because of a problem with my blood test. They indicated a problem with my liver. After taking this paper to my internist she agreed to run a series of tests on me. The diagnosis was Epstein-Barr and fatty liver disease.

I did much research on Epstein-Barr (the fatty liver problem disappeared in 4 months) and I was convinced that it was not the only problem. I sat down and wrote an extensive list of all my symptoms and about when they started and how often I had them. I then took this list to a new internist and begged her for help.

The first test came back low thyroid. I have often tested positive for this over the years but have only once been placed on medication. I knew that this did not cover all of my symptoms. Further tests reveled Lupus.

I am now trying to learn everything I can about lupus and how to combine natural, holistic, and modern medicine to lay this "beast" to rest. The only drug I am taking at present is an anti-depressant called Serzone.

It is difficult most days - but not impossible. The hardest part is trying to go through this alone. I am not in touch with my family, and do not have close friends. I filled my days with starting and maintaining a business, raising a child, volunteer work and coping with my symptoms. My husband decided five years ago when I was diagnosed with Epstein-Barr that this was too much for him (he wanted a "healthy" wife) and I am sending my daughter off to college this fall. However, I plan to join a lupus support group and a lupus chat line. So maybe this is the "kick in the pants" that I needed to start living my life. Wish me luck. And much aloha to you all.

- Karen