My name is Marian and I live in the eastern part of The Netherlands in a beautiful city with two dogs. My S.L.E story begins in 1975 with a stiff finger. I was 16 and had just left high school: my goal to become a nurse. But there was this stiff finger, and in 3 weeks I couldn’t move anymore. I have an 8 year older sister who was treated at that time for rheumatoid arthritis by a rheumatologist, so our family doctor sent me to him too.
At the first visit I was examined, pictures were taken, blood samples were taken, etc. After 3 weeks I got the results, but they were very unclear and I was very sick, so I had to be hospitalized. It took several weeks before there was a place for me in the hospital. I had, of course, several complaints and doctors were sure that I had something, but what? They could not get a clear case because tests were false positive or false negative.
This hospitalization lasted 11 months. When I got home everything went well for about 7 months; I even got a very nice job in this hospital! In May 1977 I was in the hospital again, but for a shorter time. Among the already known things ( sick, fever, pain) I had little lumps that could appear one day and disappear the other! They were painless, but gave a nasty feeling when rubbed. The result of biopsies were unclear.
And so I lived on pretty well until 1981. My rheumatologist (a very nice and understanding one) told me that though I was treated as a rheuma-patient he was sure that rheumatoid arthritis was not my illness. He could not tell me what it was because one thing didn't fit with the other; it was a big puzzle! That year I became sick again and had to stop working. It was a time of fever/no fever, pain/no pain, eating/not eating. In the hope of getting better, a vacation with my mother and her friend to the Dutch Antilles where one of my brothers lived at that time was taken. And for two weeks I felt good! My brother, a male nurse, could give me my Gold-injections and other medicines so that worked pretty good.
The third week however one of my knees got "locked" while I was swimming in a bay with a water temp. of 24 degrees Celsius. I was saved from drowning by my brother and my Mother's friend. The medication (gold, Plaquenil, Indocid) didn't work anymore so I had lots of pain. I was sick again, especially on the flight home. That was hell with diarrhea, fever, vomiting, etc.
Back home, I went to bed and did not get out for several days. Our family doctor thought about a kidney infection, and gave me antibiotics. They helped a bit and in about 4 weeks or so I was on my feet again, at least for a short while.
Then in May I saw the hospital again from the inside. Several tests and researches where done including a liver and sternum biopsy. The liver biopsy showed that the gold had stapled to its tissues so that was stopped immediately and after 6 weeks I was home again.
For about two weeks everything went good and then I started to be sick again! Thick feet, unable to eat, unable to breath properly, and fever. My weight sunk to about 50 kg, My body stored fluids everywhere, so there I went again, back into the hospital.
For the first time I was given a dose of Prednisone, which worked for about two weeks before everything started again--now with high fever and breathlessness, and a disturbing sound of the heartbeat. A cardiologist came to join the team of doctors and he ordered an echo (pretty new and expensive at that time), and more x-rays. These showed that the heart was bigger than it should be and the echo told also that something was very wrong.
In the mean time, I got used to sleeping half sitting because that was the only way to get some more oxygen while trying to sleep. More medicines did not help and another echo had to be made. The night before this had to take place I had high fever and was very sick during the making of it. Back in my own bed again my cardiologist came to me to tell that I had Pericarditis and that there was a lot of fluid in the pericardium (a sack surrounding the heart--Cathy) which had to be taken away by puncture. A younger doctor was asked to do this because he had not done this before. From this announcement on everything went very fast and before I knew it I was on my way to the O.R.
There was no O.R available at that time so it had to be done in an x-ray room with a monitor! All I cared about was to get some air! Saying goodbye to the world and my life, I arrived to the place where it would all happen. We only had to wait for the doctor who had to come from another hospital. And was I glad to see him! Immediately after the beginning of the puncture I had a big relief. I could breath again, had oxygen!
After what must have been 1 and a half hours some 370 ml. of fluid was taken away, and in the next days more taken away through a cannula that was placed. That was on the I.C.U. unit.
Back to my own department in a regular bed again, I was told that my illness had a name. That name was S.L.E, and it was a very dangerous disease. In 5 years I would be sitting in a wheelchair!! The Pericarditis was the last piece of a big puzzle, he said, and that was solved. How right he was! I got proper medications, got stronger and better and left the hospital. I have not been back yet. With ups and downs it was pretty quiet until 1993, and since then it has not been quiet. Every year I appear to have a " down"-period. In 1993 I was at home in bed for 4 months.
In the meantime, I live alone with two dogs and they give me lots of fun. One of the hardest things to deal with is the reaction of some very dumb people who see you walk around, looking healthy and not working for your money. Now I'm done with it, but I had some hard times. If I didn't have such a good family I do not know if I would have been able to manage it the way I did. Me and S.L.E are always in a state of war, you know. I want to be sure that I have S.L.E, and that it is not going the other way around so that S.L.E gets me! Because it never will, you see?
I know that lot of Dutch people live abroad and maybe the next page is interesting to them, for it is in Dutch and has S.L.E too: http://www.reumadorp.nl /

Marian