My Story

It all started around July of 1996. I started to get terrible pains in my joints. They were crippling, and the joint would be completely frozen so I couldn’t move it. The pain would slowly go away, and then it would move to another joint. The worst part was that no one believed me except my Dad and Grandma. I thought that I was going crazy. Then the arthritis went away everywhere but in my hands, which were swollen, stiff, and numb.

Then I got a rash on my hands. It was all over my hands but it stopped at the wrist. By this time I was 13 years old. School had already started and I asked my teacher at the beginning of school if I could go to the school nurse about the rash. So I went to the nurse and she said that I had to go to the doctor to make sure that it wasn’t contagious, so she called my Dad. My Dad took me to the doctor, (who’s name I will not reveal but he knows who he is), and he came in and said that it wasn’t contagious and that I could go back to school. So I asked what had caused it, and he went in to allergies and asked if I had gotten any thing on my hand. (Several days before I spilled Downey on one of my hands and washed it off right away.) I told him about the Downey, (big mistake), and he said that it was that, even though I said I only got it on one hand. So I went back to school, and the rash continued to spread.

Then I had extreme fatigue, a rash, and arthritis. (Although I had been tested for arthritis and was negative.) I would get up in the morning and go to school, come back and go to sleep. I would sleep the whole evening and get up and get a bite to eat and sleep ‘til morning. Then it got to where all I did was sleep I couldn’t get to school., and I stopped eating. If I did eat I got sick, and I wasn’t hungry anyway. My Dad would make chicken or beef bouillon for me and that is all I had. This whole time I keep going to the “doctor” and he keeps blowing me and my Dad off. He said that I had Mono. I said that I couldn’t have mono because, 1. I don’t drink or eat after anyone. 2. I don’t drink out of water fountains. 3. I hadn’t kissed anyone. Well that wasn’t good enough for him, and he kept testing me for mono.

October 30, 1996 - Finally it got really bad, I was so sick and weak. The doctor’s office called and wanted to move the appointment a week or so later. My Dad lied and said that I wasn’t holding anything down to get me in that day. (God bless him!) So we went to the “doctor” again., and he checked my eyes and knew that Dad had lied because he said I wasn’t dehydrated., but he said that he could put me in the hospital if my Dad wanted to. (Can you believe this guy?) So he runs more tests, and the lab technician said that it wouldn’t take very long to get the cell count results if we wanted to wait. While my Dad
is setting a new appointment, the lab technician came out and said to wait because the doctor may want to talk to us. If that doesn’t sound ominous, I don’t know what does. When she comes back, she tells us the go ahead and that he would call us.

So we went home and about two hours later the phone rings. My Dad answers at the same time that I did. So I listened in while the “doctor” talked to my Dad. I don’t even remember what he said except that he thought that I had leukemia. (Yes, he thought that I had leukemia.) I started to cry. He had made a reservation at the nearest children’s hospital for me to go up and get more testing, so we headed up to the hospital that night, and when we got to my room the leukemia doctor was there to talk to us. He was pretty sure that I had leukemia because I had such a high white blood cell count. When they
took blood for testing, it was bubbling out of the vein. I had a 107 temperature. And I felt so bad that I didn’t care what they did. They ran me around all night running tests. At 3:00 a.m. they got x-rays.

October 31, 1996 - Halloween, what better day to find out that you are sick. They ran a bone marrow test to check for leukemia at 7:00 a.m., and I bet that you could guess that it came back negative. They sent in the Rheumatologist to tell me that I had lupus, which I had never heard of, and my parents said isn’t that fatal. We learned that it was treatable, and I stayed in the hospital for a couple more days and started taking steroids for the lupus, which made me feel a lot better, and very hungry. (Needless to say I never went back to that “doctor”. From now on when I refer to a doctor, it is my Rheumatologist.)

Two weeks after I was released, I had to go back for a kidney biopsy. (After you start to feel better you really do care what they do to you.) But it wasn’t bad, and it sounded a lot worse than it was. Then I found out that I had stage three kidney disease. From July to October the lupus had done a lot of damage, and I had to start Cytoxan treatments. The plan for the treatments was one treatment every month, for seven months, and then every three months for three years. I started to get sick after the third treatment, and the doctor said that was unusual. Then when my doctor tried to stretch me out to every three months I went into a flare. This time it went after my platelets, so she told me to try not to get cut. She shouldn’t have said anything, because I started to get cut on anything that was the slightest bit sharp. So I had to get the treatments every two months.

They didn’t put me into remission but they did help to control it. They stopped the treatments, and now I am taking Imuran to replace them. My new Rheumatologist is trying to get me off my steroids by replacing them with Plaquenil. So far so good. I think that the most important thing is to have a positive look at life. It is so easy to get down and out, and I remind myself that it could be worse.