The story of Mónika
My name is Monika Demeter, I am 47 (forty-seven) years old and I live in a small town near Baia Mare, called Seini, in Maramures, Romania county. I am married, I have 2 (two) children, I work as a primary teacher, and I would like to share my story with you.
My first symptoms appeared in 2000 (two thousand) when I was 26 (twenty-six), after 3 or 4 months after I had given birth. I initially thought it was because of the lack of calcium in my body, because at the beginning my fingers started to go numb and become white. It was, actually, the Raynaud syndrome, to which I hadn’t given the smallest importance, unfortunately, not even when my fingers started to become blue. During the next 3 or 4 years the calcinosis and ulceration started to appear, but I didn’t even know what they meant back then. In the meantime I had another pregnancy and multiple health problems started to appear and I spent most of the time in hospital.
I got to a speacialist doctor only in 2002 (two thousand and two). After a few days spent in hospital I got my diagnosys: systemic scleroderma with a dermal form with SCL 70. This disease was never explained to me, though I was desperate and got panicked after reading a lot about it on the Internet. Nothing changed, only me and the family members knew about the disease. The only thing I knew about it was that it was a very rare and autoimmune disease and that I will not live long. I was tormenting myself and I was ashamed of my blue-purple hands and of my disease. I was afraid, I felt as if I was lost, I was sad and furious at the same time: why me? Why? I kept asking myself numerous times. I got pentoxifilin for 3 months and nothing more. I’d like to mention that no one asked me to come to a medical examination and got no advice. The next winter I got the same treatment, given with the same lack of interest by another rheumatologist doctor. I was so upset that I said to myself I won’t visit another doctor again because they do not help me with anything. The whole winter my fingers were full of ulcerations, I was in pain and the gastroesophageal reflux and the tiredness was disturbing me a lot.
My stubbornness of refusing to go to doctors and of treating myself took other 7 years, until the winter of 2015 (two thousand fifteen), when at the insistence of my family, colleagues and friends, I gave up and I decided to give it a try once more. I looked for a rheumatologist doctor on the Internet and I found one at 200 (two hundred kilometres) distance from me, in Cluj Napoca, at the Rheumatology Clinic. This time God took care of me and I met the right doctor, the angel that saved my life, bringing back my smile and giving me hope. The doctor that is at the same time a HUMAN BEING, with an exceptional training and professsionalism, a fine psychologist empathysing extraordinarily with her patients, and last but not least, very attentive, opened and honest – Dr. Laura Damian. Her presence alone is healing and she knows how to make the pain go away only with her smile and her words full of optimism. At each medical visit I am informed in every detail with the procedures and treatment that I am going to have, and if I have any questions she kindly answers to them, calming me every time. As well trained and prepared professionally, understanding and dedicated to her job is her nurse, Miss Ciursă Gabriela. Two wonderful people… I declare myself extremely lucky, happy and blessed because I had the chance to meet them. I wasn’t afraid anymore and I wasn’t ashamed of my disease anymore. The doctor, together with the nurse, made me understand that I can beautifully live with this disease, that I have chances to a better treatment and they made me believe in doctors again. Then, I understood that there is life even after such a diagnosys, but unfortunately, during the 15 (fifteen) years without proper treatment, the disease took hold of me and of my body, cruelly attacking almost all of my internal organs. It so happens that with the aggravation of the disease I contacted various autoimmune diseases – my friends – , as I call them, because we learnt how to live together: Hashimoto, the Lyme disease, pulmonary fibrosis, and these are the haviest that I have. This disease can cause numerous symptoms such as: tiredness, joint pains, palpitations, anemia, arterial hypertension, telangiectasias, the thickness of the skin, cardiac insufficiency, finger acroosteolysis, etc. Specific to this disease is the CREST syndrome, with which I am confronting and which is characterised by:
– Calcinosis (calcium deposits) hypodermic in fingers
– The Raynaud Syndrome: it blocks the blood flow in fingers and toes, ears or nose and cheeks.
– The esophagus is affected through the loss control of the esophageal muscle which can lead to difficulties in swallowing.
– Sclerodactyly (tightening and thickening of the skin of the fingers which can cause the fingers to curl inward and the hands to form a clawed shape).
– Telangiectasia: the apparition of vascular spots on the teguments of fingers and mucous membranes.
Now I have the right treatment, immunosuppressant drugs and biological treatment. I am part of the handicap category of people, so a part of my medicine is free, but I also have medicine which I have to buy on my own.
Unfortunately not everyone realises what living with such a disease is, but I am still a lucky person as I have God by my side, always, who is holding me in His hads, I have my children, my parents, my sister, my friends and some members of my family, and last but not least, my colleagues and the managing department of the school I work at. My students give me a lot of power and energy. They are another type of treatment in my life. I LOVE this job so much that I hope I will be able to do it for many years on from now. Another purpose of mine is to help other people who are ill, to be better persons, to live a calm and happy life leaving traces of love in other people’s hearts. In the end, this is all that truly matters and I know that every day is a blessing.
This cruel disease brought some good things in my life as well: wonderful people! Both from the medical department and from the patients with rare disease.I would recommend these patients to never forget that even after a cruel diagnosys like this one, there is still life afterwards. They only have to see things with optimism and keep smiling.
Thank you for your attention!