I was to celebrate my 21st birthday when I was diagnosed with pneumonia.. “Nothing serious”, said the doctor. “You will be fine in a month “, he said. As a student of violin in the local Music Conservatoire, a month in a bed was a huge bother for my plans and commitments, but I thought I could wait.
I did not know I would wait 2 years and a half to understand what was going on to my lungs, and to recover.
When we realized the antibiotics were not working, I accepted the idea of entering a hospital. I felt so bad I could not oppose any objections. Since the infiltrates had shifted from one lung to another, apparently without any reason, I was confined to the infectious diseases ward in the local hospital. I thought I had some viral disease and was afraid to infect other people.
Not far from my room, which looked like a jail with iron bars at the window, there was a boy with encephalitis who screamed day and night. Of course doctors were baffled. I was given huge amounts of different types of antibiotics, and lastly prednisone, not because they had reached a diagnosis, but as their protocol for respiratory crisis. As soon as I was given steroids, I fully recovered. The doctors said the lab test did not show evidence for tuberculosis, but I probably had it. So I was given a treatment for that, which caused a serious allergic reaction.
I entered other hospitals three further times, changing wards every time for every new hypothesis, and saw dozens of other consultants, but nobody could figure out what was happening. My ANCA tests were negative, so I could not possibly, according to them, have an auto-immune disease. My eos were high, up to 37%, but they found some intestinal parasites and justified the eosinophil number with that.
I saw the effect of prednisone on my body and asked desperately for it to physicians. “You look like a drug addict”, they would say. “This will mask the symptoms but will not cure you”, they said.
I spent 2 years and a half getting in and out hospitals. Most of my friends thought I had some contagious disease and simply disappeared. My mother thought it was all in my mind: to her, I just was not strong enough to fight the fever with my own will, like if it was a somatic one.
I went to an homeopathic doctor who wanted to convince me of the evil of chemical medicine and to follow another, holistic, approach. I think I nearly died for that.
The saddest thing was I could not play anymore. In a field in which daily practice is everything, I was forced to leave the instrument in its case and forget about it. I simply had no strength, no more. I decided to enroll in another faculty, a literary one, not to waste my time, something I could study in bed, in a lonely ward surrounded by ladies in their mid 70s.
Then, I went reluctantly to see a young doctor who was a friend of a friend. I did not trust doctors anymore, but, as a last chance, I went to see Dr Mario Campanella, a brilliant nephrologist in Pescara hospital. He explained me what I went through. He gave a name to my illness and told me what to do. I was 23 years old then.
I’ve spent 12 years, since then, pretending I was not ill. Of course I had my ups and down, but I nearly never moved from my 8 mg daily dose.
I graduated both in Music and in English. Aware I was not exactly ahealthy person, though, I decided I could not cope anymore with the strain of playing as a professional and I decided to teach.
My boyfriend Stefano stayed with me during all that time. We married 8 years ago and are hoping we can have a baby soon.
So far so good-until my father got ill, only four months ago. The same nightmare, variations on a frightening theme. He was loosing his renal functions, and they were doing nothing but giving him huge amounts of antibiotics. He was diagnosed with glomerulo-nephritis, in another hospital. And once again, even if both ANCA tests were positive this time, the doctors could not detect the vasculitis, until they decided to make a biopsy that confirmed my suspicians. We also have a cousin with rheumatoid arthritis: itís definitely a rare case of familiarity! Now my father is fine: he ís currently under prednisone and cyclophosphamide and he’s getting better, followed by the same Dr. Campanella who had helped me before.
CSS has changed my life. I could have been a different kind of person without that experience of suffering. Neither better nor worse, just different. When I went back to “normal life”, I was full of energy and enthusiasm, like I had never been before. The disease helped me to see life in a different way, and to evaluate things around me from another point of view. Now I am working as a teacher and I do enjoy it, even if I still play my violin every day, and play in concerts when I can.
I still believe in medical research. There might be other drugs with less side effects to heal us. But most of all I hope that medical doctors will be better trained on auto-immune diseases, to spare patients so many frustrations!
I also learned, more recently, not to hide anymore. My father’s disease urged me to be more aware. This is why I browsed the internet, and found the css association. I decided to sign in. Only by talking, and by sharing experiences, feelings and fears we can cope with it. There might be other people with similar stories. I hope mine can be of some help to somebody.
Cinzia, CSS 1994