It all began over fourteen years ago. I had been married twenty years, had two children whom I adored and held various secretarial positions since high school. Now I was working full time for a computer company in their engineering government contracts division. My title was Contracts Administrator. I was paid a handsome salary with accompanying benefits. I was very happy with my career.

One particular summer the company decided to submit a proposal to the government for an engineering contract. I worked day and night on this along with marketing personnel, engineers, finance department, etc. A computer was installed in my home so I could work at night. I worked approximately 75 to 90 hours a week for over four months. Upon completion of the proposal I asked for my two week vacation so I could catch up on much needed rest. This was granted because I was told I had done an exceptional job.

The two weeks passed very quickly and before I knew it I was back at work. This time it was different. I had that time off and slept most of it away but I still felt exhausted. Moreover my shoulders felt like they had cement blocks on them all the time. I had lost my enthusiasm, cheerful attitude and mostly my desire to work at all. I would tell people I felt like "Who hit it and ran". I found myself late every morning and not caring I was late. Finally I decided to see a doctor. He listened to my story and after examining me concluded I was suffering from a "High Tech Burn Out" and needed time away from work. He wrote his findings for my company and I was placed on short term disability. Now I had three months to get myself back to normal. I thought this would do it. Wrong!

I returned to work after my three month leave on a part time basis. I worked every other day and found I was able to handle this. Not bad because I slept on my days off. I did not pay attention to the fact I was sleeping more than normal because I was working well on the other days. Finally I started full time again. I held my own for about a month. I would work then go home to bed. That's all I could do. By the second month it started again. My shoulders ached, my whole body ached, my sleep requirement rose and I was late every morning. It got so bad that some days I just didn't bother to go in or even call. Then the depression set in. I had been to doctors and they couldn't find anything wrong. Now I began to think it was all in my head. I kept telling myself there was nothing wrong but my body kept telling me there was. This went on for a year. Finally the company who once praised my abilities as an outstanding employee was showing me the door. I lost my job. I don't blame them because I would have done the same thing to me. They kept me on for a year and I did nothing. Hardly showed up and when I did all I did was wish it was time to leave.

There I was unemployed, a daughter in college and a son in high school. I needed to work but I knew I was not capable. Still I had no answers and now I had no insurance! I bounced from one doctor to another and finally gave up. Even my family began to think I was making it up. This continued for months but I was getting worse with each passing month. I became crippled with pain. Christmas Eve I was planning to attend midnight mass at our church and I could not walk down our stairs. I remember sitting on the top step crying. That following spring my husband insisted I see another doctor. I did.

I saw a doctor who had been recommended to me. He was a general family physician. I told him this story and he listened patiently. I asked if he thought maybe I had arthritis. He never answered that but quietly checked my hands, ankles, knees and then said he wanted to do some blood tests and would let me know the results. I received call to return to his office for more testing. This I did. I asked why and he told me my arthritic count was high and he just wanted to rule out various ailments. I left thinking I had arthritis. The very next day his office called again. They said the doctor wanted to see me right away. This scared me. I know if you are called that soon and want to be seen immediately it can't be good news. After all it takes awhile just to get an appointment.

I sat in his office staring out the window all the while wringing my hands. I was so terrified. He finally entered and was speaking with such warmth. His soft voice asked how I was feeling and then asked several other questions. One question was did the sun ever bother me. I thought this an odd question; maybe that's why I remember his asking it. I told him how I always avoided the sun because it felt too hot on me and I would get awful burns and blisters from it. That we had moved to the country because of my love for trees. He then asked if I had ever heard of Lupus. I replied no because I hadn't. He gave me a brief description of the disease which I could not comprehend as I was taken back with such a diagnosis. I tried desperately to pay attention. He then said he was referring me to a rheumatologist who specializes in lupus. I panicked. I felt it had taken me so long to find a doctor who knew what was wrong with me and now he wouldn't treat me. He assured me this doctor specialized in lupus and could offer me the best treatment. I drove home tears flowing down my cheeks. I was filled with many emotions from peace of mind knowing I wasn't crazy to complete fear of what this illness was. Then the name of the disease itself was such an awful name. Just my luck to be stuck with that. All the different names of diseases and I got "Lupus" yuck!

I saw my husband's car parked in the driveway as I approached our home. "How am I going to break this news?" I asked myself. He was waiting for me in the family room. We sat together and I told him everything I could remember. He immediately headed for the encyclopedia. "Lupus from the Latin word meaning Wolf" he said. What did a wolf have to do with it? He continued reading about the facial rash resembling a bite of a wolf and so on and so forth. There was very little information. He then turned to me and put his arms around me. He told me we would handle this. That somehow we would get through it. All he wanted was for me to see this new doctor and get as much information as possible. He offered to go with me but I told him it was more important for him to work. We both knew we were in for hard financial times. He was a contract worker with no benefits and I had lost all mine. We also knew I wouldn't be working so it was going to all fall on his shoulders. We knew all this without saying a word.

I remember telling my son and he asked if I was going to die. Once I explained that I thought I could live a long time he didn't seem to be too bothered by it. He was only worried I was dying. Other than that he never talked about it. I tried to find out from him what he was feeling but he never would say. I still wonder what he really thought. My daughter was away at college. When she came home for a visit I gave her the news. She asked general questions e.g. what is it, what causes it, can she get it, is there a cure, etc. Like her brother she didn't have much to say about her feelings. Unlike her brother she attended meetings with me and listened to what others had to say. I think when she returned to college she did some research on her own.

About two years ago I had major surgery. I needed a new heart valve and a double by-pass. Before I left the hospital the surgeon informed me the test results showed that lupus was the cause of all the damage. It was a long healing process. Within six weeks I was back in the hospital with a severe infection in my incision. My white cell count was through the roof and aggressive antibiotic treatment was required. The doctor also opened my incision to drain the infection. The entire treatment lasted twenty days. Once I got over that hurdle I began my healing process. That took a good year. I am lucky to live in such an advanced medical era.

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