I met my Lupus on a sunny day of April 2003 when I was 23 years old.
A year ago, I was hospitalized because I fainted with seizures. At the time, the doctors told me that anyone can have such episodes once or twice during their life. However, a neurologist in training thought that I was suffering from Multiple Sclerosis so I went through a lot of blood tests and other examinations, until my diagnosis was confirmed. It was early Spring. Everything in nature was colorful and vivid, but my body was going to have a “roommate” for the rest its life. My doctor told me that I didn’t have MS but “Systemic Lupus Erythematosus”. “What is it? What do I have to do?”, I asked naively. “If you follow my instructions and have a healthy diet, everything is going to be o.k.”, he said. Unfortunately, my lupus was more aggressive than we could imagine at that time.
It started with intense epilepsy. I had several seizures, one after another. I felt like I was dying and reviving, over and over. I had pain all over and it was very hard for my family to watch. I had to quit my job. Eventually, after a lot of drugs, my epilepsy started to stabilize.
Two years later, my lupus decided to attack again. Myositis! My whole body ached. I couldn’t walk, I couldn’t comb my hair, I couldn’t even get dressed! 40 days in hospital, many drugs and a biopsy which confirmed that my muscles were affected. I was desperate! My fiancé was understandably anxious about our future. At the same time, my kidneys were affected too! That made things even more difficult. Yet more new drugs and a lot of nights which passed by with me watching drug infusions drop by drop. I had to learn to walk again, like a little child, one step at a time. I was so weak! During this period, doctors and nurses stood by me, always with a smile. I was their “Barbie” because of my pink pyjamas and my colorful blanket which they always let me have. During those years, I had several infections, most of them indefinable. I was prone to almost everything! That flare lasted for about two years. There was an ongoing problem with my CPK, which was always high! New prescriptions and new restrictions followed. I was always a disciplined patient, like a soldier. Every word the doctors said was law for me. Finally, with a lot of trying, many prayers and a strong will for life, we managed to get my flare under control.
Two peaceful years followed until the end of 2008, when I got pregnant for the first time. So much happiness, so many dreams and then, in the seventh week, I had my first miscarriage. Tears returned to my eyes again but this was a different pain. Another try five months later and I dared smile again. I was pregnant for a second time but unfortunately that pregnancy also ended, this time at nine weeks. Five months later, I was pregnant for a third time and I went through the most painful experience so far when I gave birth to a still born baby in the seventeenth week. I wanted a baby so much! I wanted to see my husband happy! After four months, we decided to try in vitro-fertilization with pre-implantation diagnosis in order to increase our chances. We were defeated again in August 2010, in the ninth week of my pregnancy. I was crying non-stop, my heart was broken! I couldn’t stand seeing babies and it broke my heart when I was invited to children’s birthday parties.
All these bad thoughts provoked another lupus flare, the worst so far. Summer of 2011, I was exhausted even by a tiny effort. I had a severe cough and I was breathless. This time I had pulmonary fibrosis. I was devastated. No, it couldn’t be true. My lupus was slapping me again and again, stealing my oxygen. I couldn’t even speak! My doctors were insistent: chemotherapy! I refused because I really wanted to have a baby. I asked for alternative medication. That led to a lot of prednisolone and many hospitalizations. My spirometry result started to improve from 18% to 25%, even 35%. I was happy and ready to try again for a baby, despite the high risks. On April 2013 my fifth pregnancy ended in the eighth week and my dream went away. My fibrosis got worse and I finally accepted chemotherapy. My doctors prescribed me injections in order to protect my fertility and even though I was terrified, I started. It was really hard for me to accept my situation and I started to suffer from depression. I didn’t want to see anyone, I cried non-stop and I lost a lot of weight without controlling it. I decided that I needed to see a psychologist. Right from the very first visit, she made me see things differently, she was really helpful.
Since October 2013 I have been on Cellcept® and things are getting better and better! My spirometry result is up to 60% and my doctors are proud of me.
Over these years, I have learnt to love my lupus, despite so many difficult moments. I know that I need to relax and be as happy as I can. My lupus has made me strive to always try my best. We live together in the same body. When I am content within myself, it is reflected in my body. I have been lucky to receive so much love and tenderness from my doctors, nurses and everyone who is involved. I have learnt from all this that we should always be positive thinkers and never give up. After all, what counts in life is not how many times you fall, but how many times you get up!
Anna from Greece
Anna is a member of the Hellenic League Against Rheumatism – El. E. AN. A