My Story
It began as a fever, so high I hallucinated.
Next it was my skin. I was all red, as if I had been in the sun for hours, had some patches of rash, especially on my face, like a red butterfly on my cheeks. All my soft tissue had ulcers, my mouth, the inside of my nose, my esophagus, stomach and intestines burned as if with acid reflux. I could only eat very bland food. The fever had not abated. We thought it was one of those mysterious viruses I got so often as a child.
Next morning, I could not move. Every joint in my body was swollen completely and I could not bend any single one.
Christmas Day 2001 came by, that morning all my muscles were gone. It had literally eaten up all my muscles, my legs and arms were limp, if you raised them you could clearly see the bone, and a mass of skin hanging down from it.
I remember only the supreme effort of answering questions I really didn’t understand through the mental fog and trying to smile.
Everyone was worried now, but all the doctors we knew were on holiday. I refused to be taken to the ER, so my mother called a paramedic friend of hers. He said everything sounded really bad, but I needed to see a specialist. He recommended something, but still stubborn, I refused all medicine. “It will pass eventually, as it always does”, I thought.
25th December, my spinal chord was inflamed and horribly painful, the fever was back to alarming temperatures, my whole body arched in spasms and I could not deal with the pain anymore.
It was only until this moment that I got really worried, stopped making light of my symptoms and asked for help.
A doctor, a geriatrist, was the only physician available in the holiday season, so I was taken to him. When he saw me, doubled over in pain, on a wheelchair, unable to move, burning in fever, he was appalled.
I sat there listening while my mother recounted the week’s events. Listening to the story I could not believe it had taken this long to see a doctor. By his face he couldn’t believe it either. In my mother’s voice I could hear despair, guilt, helplessness. He could hear it too because he didn’t say anything to the fact that we had waited this long. He just uttered the ominous pronouncement: “I think she has Lupus, an incurable disease, and by your account, she has an incredibly virulent attack. She has only a couple of days to live.”