As a child and up until the diagnosis I've experienced many problems. As a child I was sick a lot and my mom didn't know what to do with me. She took me to several doctors and they told me it was psychosomatic, or hypochondria. I knew my problems were real and I had no control over them. The one that sticks out in my mind the most is stomach problems. Spastic colitis and acid reflux began in my childhood and have been constant up until now. Just last year, in 1998, the colitis was so bad, accompanied by vomiting every day for 3 months, that I eventually went to the emergency room one evening. All the lab tests were normal. The ER doctor therefore believed it was stress and anxiety, suggesting that I visit with a counselor. I even told him I have lupus but he insisted that it had nothing to do with lupus and I really needed a psychiatrist.

During my teen years I developed Asthma while still dealing with my gastrointestinal problems, and suddenly became very sensitive to the sun. But, living in San Diego, California, you can't be without a tan. So, I would tan with friends, go to the beach, get a bad sunburn and by that evening I would be exhausted and feeling very ill. I had even missed school because of what my mom refered to as sun poisoning. Then, when I was around 18, I was diagnosed with Mitral Valve Prolapse. My pulse ran from 160 to 180 beats per minute. I couldn't get my head off my pillow or I would pass out. I had bouts of passing out a lot as a small child also, and the doctors told me to breathe into a bag because I was hyper-ventilating. Then, at 18, I finally had the diagnosis of Mitral Valve Prolapse. However, that diagnosis was later discovered to be wrong.

As of last May, my Cardiologist re-tested me and with all the new technology he discovered my valves were working fine but that I had a "short circuit" in my heart that would need surgical repair. I refused, saying the medications seemed to be controlling my heart rate just fine and I didn't need a pace maker at the age of 37! The final diagnosis was "Paroxysmal Suparventicular Tachycardia" (PSVT).

In early adulthood, more symptoms developed. At 18, I was diagnosed with endometrosis and by the age of 22 I had cervical and uterine cancer which required immediate surgery. My OB/GYN is a physician that I trust as much as God. She was able to preserve my reproductive organs, but concluded that I would never be able to have children due to the scar tissue. By the age of 22, the same cancer which had been removed internally returned, but that time it had grown all over my vulva (the external tissue of the vagina). My OB had tried her best to take small areas that were cancerous, but it kept comming back. She told me that for some reason, my system wasn't fighting this as it should. She felt the treatments she was doing should have been effective, if my immune system were functioning properly. She finally asked me to submit to an AIDS test. I agreeed, and it was negative. I eventually went through another surgery, called a Vulvaectomy, to remove the cancer. I finally made it 5 years and didn't develop any more cancer.

In 1986, at the age of 25, I now realize was when my Lupus truly began. I had developed a severe Discoid Rash covering both of my arms, my chest, neck, and back. It was horrible. These rashes were very welted. I went to a Dermatolgist and he performed a skin biopsy on the rash. Each type of test he requested was negative. And even though my many other unexplained symptoms were invisible, there was this horrible rash which was quite visible, yet my lab results were all normal.

I had to quit my job in 1994 due to severe fatigue and pain. Having been accustomed to two incomes, it has been a difficult adjustment, but necessary. My husband was concerned about my health and supported my decision to stop working. Since that time, I've seen so many doctors that I can't even remember them all. Each of them were curious about the rash, but just decided to call it "Dermatitis." Since none of them could explain my pain or fatigue, they all concluded that I just needed to consult a psychiatrist! By that time, I did need a counselor, because after all the tests and turmoil I'd been through, I had become depressed and anxious. Who wouldn't? I had something very wrong going on inside my body and no one could find what it was. I had no idea why I couldn't do the things I used to be able to do, nor why I was so tired all the time. From 1994 until I was finally diagnosed in 1998, I had suffered such extreme depression and the physical pain had become so unbearable that I attempted suicide 3 times during those 4 years. I didn't want to be a burden any longer and I couldn't tolerate the fear of having more pain. I was hospitalized all 3 times.

My lupus diagnosis finally came about in 1998 after going to the dermatologist again for another cortizone injection in the rash. These injections made the rash temporarily disappear. That particular day, the physician asked me if I had any other symptoms going on in my body. I began to list the problems and diagnosis I had over the years. I told him about the surgery on my right hand in 1997 for carpal tunnel syndrome, and that I had developed a rare disorder as a result of the surgery called Reflex Sympathetic Dystrophy (RSD). He said he didn't like what was going on and ordered an ANA test and complete Rheumatoid profile. Two days later, he called, asking that I come in to discuss my lab results. During that visit, he stated that he was very concerned about how high my ANA was, and that he wanted me to see a Rheumatologist right away. He phoned a Rheumatologist while I was there in his office, and was able to get me an appointment for the following day. This same Rheumatologist is still caring for me today and I feel very blessed to have him as my physician. I have to give the greatest thanks to the dermatologist for taking the time and having the interest to ask about other symptoms and to perform the blood tests. All the many doctors I had seen during those prior years, including many specialists, had never even bothered to order these blood test.

Since my diagnosis in 1998, I have yet to enter remission. Up until very recently, the lupus had affected only my upper body. I have migraine headaches a lot, I have Arthritis, Fibromyalgia, Discoid rash, persistent stomach problems, thinning of my hair, and Sjogren's Syndrome. But, for some reason, I thought the lupus would remain in my upper body. Unfortunately, I got a rude awakening over the last few months since it is now affecting both my legs. They are very weak and painful, and I can no longer depend on them to hold me up. I also experience numbness and tingling. I've become forced to use a handicap cart in the stores or have my husband push me in a wheel chair. I have been unable to drive my car due to the severe weakness in my leg muscles.

My husband is even more concerned about me since my legs are affected, and he is an extremely supportive man. I have had a very hard time dealing with this, but I am glad to have such a loving, caring husband and supportive family. I will someday be able to make the best of this, but right now I am still grieving the loss of my active life, my energetic body, and now grieving the loss of use in my legs. I am just going to have to find a new way of living and I haven't quite figured it out yet. I am thankful for having a good doctor and for having a forum on the net that I can go to everyday and visit my friends there. They are my life line right now and with their help I will find a new me and come to accept this disease.

Thank you for reading my very long story.
One day at a time.... 12/05/1999