Hello

My name is Lydia, I also have SLE Lupus diagnosed in December of 1989. I never heard of this dreadfull disease. This point in my life I worked two jobs both jobs with joy and peace. The full-time job I worked in the hospital in the laboratory and the part-time job at a church as an Administrative Secretary. See I am a single parent with two children; my first child was ten years and the second one was eight years of age. I was able to take care of all my bills. God, blessed me to own a house and car. I am head of my house hold. I never knew what was happening to me when I started to make mistakes on my hospital job. When the mistakes was called to my attention I could not for the life of me understand what I did wrong so I could correct my mistakes. I through I was stupid and losing my mind. The one good thing that was on my side the doctors in the pathology lab, helped out a lot to inform me of this SLE Lupus. The rheumatologist was very good. He would come by to see how I was doing on my break. I haven't found another reheumatologist like him ever. The medicine of this disease is very expensive but, at this time I had health insurance to cover everything. As time went on I quit the hospital job from the stress of trying to do my job correctly and working on both jobs. I was restless, depressed, my joints in my hands hurt. They were swollen and tender. In the beginning before the diagnosis I through I had arthritis. I went out to the drug store to get all kinds of rubs. You could smell me before you saw me. I smelled bad but after a few days or weeks of this I told my medical doctor about my hands. He started the tests to see what was going on. Then He suggested a specialist. From then I was finally diagnosed. The diagnosis of the disease is very hard to detect. The DNA Double Strand test may detect a positive result. In one to two months later. In my case it showed and is sending me on a trip of my life.

After leaving the hospital I went to work for the church full-time. If I was in a flare I would be allowed to be out until its over. I could take a nap for lunch. But I did not have health insurance. So the doctors bills began.

  As far as the medicine I went to agencies which helped one time only. My medical doctor said he did not have much. Knowledge of SLE Lupus but he was starting his research. I could not afford to see the rheumatologist any more because I did not have the money. My medical doctor would treat me and I paid a little at a time. At the end of each year my income tax money would pay the past due doctor bills and others. As for the medication my medical doctor would issue me samples to help. I really love Dr. WO Black for sticking with me in this illness. He stood by me in pneumonia, fever, flue, kidney infection, high blood pressure, diabetics, joint pain, fluid, weight gain and loss, depression, feet swollen, sun burn, hair lose, nail on my foot infection.

My children could not understand my mood swings, or when I wasn't able to help with homework, or go to the park or movies. It was very hard for them to understand I was sick but yet I don't look sick at times.

My family had to change our eating habits. No red meat: No Pork Chops, Ham or Hamburgers. It was hard but I did it. "I had to say, "Some foods are not my friends." My son suffered the most, he was in and out of trouble. Now he's trying to get his life to- gether. Jamal is in college now and trying to find a job. When you have a record it is very hard to do just that. My daughter, Kimberly went through a bad period also. She did not do well in high school, she had to take the long way around to get into college in Greensboro, NC at Bennett College.

My life with employment came to an end with the church after 9 years when the pastor moved on to another church. I felt lost. How would I find another job so I started looking? I went to American Express, they hired me. I started working in 10/23/95, I enjoyed it for a while. I was able to get another house near American Express. I will say "God gave this house to me." In July I had to have surgery on my right hand (pointer finger). The joint was gone. American Express has good benefits but poor pay masters of payroll checks. I went back to work in October "96," things went down hill from there. In November I began to get so ill I could hardly make it. My hand hurt badly turn black and I could hardly use it. My life has gone down quickly. I had to get another Medicare doctor in the Carolina area. The doctor asked me about social security disability. So, I had to set out in December of 1996 to sign up. Then their is a six month waiting period without money. I couldn't pay my bills, the lights was cut off for 2 weeks, there was no food or medicine, the gas is off because I didn't have enough to pay it. The Social Security Disability turned me down seven to eight times before I received payment. In between times I had my car repossessed and insurance canceled.

Doctors sewing me for money. Hospital bills kept adding up. Scared someone will come and put me out of my house. I had to go to an agency to help me with my award payments. I finally did in December of 1998, I thought my payment would be $906.00 a month.

My children was out of school and they will not pay after high school. My payment month is $649.00 a month. After Medicare is paid its even lower $603.00 minus out my Medicare choice with Partners of $40.00 which leaves me $563.00 a month. This does not cover my house payment in which In 3 payment behind and the mortgage may foreclose. The payments are $588.00 a month. My gas bill has been disconnected now from since June to prosecute. I've been taken to court for electrical bill for my house rewired. My house needs a new roof when it rains I have to pull out the pans. I have less than $3,000.00 more on my car. They will take it if I'm over a month past due, so if I pay one bill I'm in trouble. My mother has retired and it's just me. She will help when she can. Right now my phone has been disconnected. I really cannot take anymore. I do have faith but this dreadful illness has claimed my life. I have tried so many things to work at home and have been taken by the medical claims and billing service with no luck. God has made a way for me to get a computer from Rent-A-Center. I rent to own for $53.33 a month because my credit is bad now. I cannot get a dryer, which has blown out and my hot water heater just recently bowed its head. I am at home now with my leg swollen with pain, fever, and an upset stomach. I am afraid for Monday to come because it starts a new billing cycle. I would like to work from my home so badly, so that I may make use of my good days and do what I am able to on the bad. I live at home alone with my black dog, whom I call Lady. She is my friend for life. Please, we need help to get the in formation out to others who would be able to help in the research to find a cure. It is just as bad as cancer and HIV.

  We need the funding and support of everyone. We are dying and no one wants to hear or believe. It is real, this disease which has claimed my friends and my life. I truly hope you can help.

Sincerely,

Lydia