"Learn To Live Again" (Invata Sa Traiesti Din Nou)
I was first diagnosticated with Systemic Lupus 3 years ago. It started after a strong emotional events in my life. There were no warnings, just a complete collapse. Pain, awful pain in my joints with no "medical explanations" and leukopenia. I was immediately hospitalized and for 2 weeks the doctors tested me with no final results.
But I was lucky - one doctor from the Colentina Hospital in Bucharest correctly diagnosticated me with Systemic Lupus. I had no "butterfly" mark on my face, no other skin related signs except photosensitivity. Doctor's name is Stefanita Tanaseanu and he is one of the few Lupus' specialists in Romania.
At the beginning I was terrified because I had no good info about lupus. I almost thought that I was going to become "wolf alike" in matter of days :). It's hard to have no official info about Lupus! No national websites with related infos, no published books about it, NOTHING! Not even non-governmental foundations related to Lupus.
So, that anger I felt back then was a good start for the "www.lupus.ro" idea. The next months after the diagnostic and after starting the medication I've noticed the first improvements in my general condition. I could walk with no pain! I've taken Plaquenil and Medrol according to the latest international medications. I felt well and hopeful until the start of the side effects of the drugs. I had to get accommodated with my swollen face, weight loss, anxiety, sleep deprivation, nervousity and depression and I hoped it all would pass soon. Unfortunately, after three years of treatment I still take 200 mg of Plaquenil and 8 mg of Medrol a day.
The most recent results of my tests shows that I'm better and I feel this way. But, more than all the flares of my lupus and the side effects of the drugs, what really made me upset all this time was the fact that I didn't know how to live as a lupie person, I didn't know which were my new limits and I couldn't make myself understood to the others. All this situation made me choose the slogan "Learn to live again" (Invata sa traiesti din nou) for my website.
As for the www.lupus.ro it was made to be a "experience talk" platform for all the Romanian lupies. It was also intended to have useful infos for those close to the lupies like relatives and friends. The family and friend's support is crucial for those with LES as I've noticed myself too. That's why we already have a forum and we plan a live chat system for the website. In few days we'll start the online photo gallery for the site members so that anyone can upload their own photos.
For the long run plan we are starting to gather info about a Lupus Foundation in Romania. We already have all the media related means as my friend Stefan, the other admin of the site, has an advertising agency. He also made the structure of the site and hosts it. So, it will be easy to design some lupus brochures, print some lupus awareness t-shirts, organizing lupus events and contacting the right officials and also the sponsors. I guess it will be a "hit" for the lupus acknowledge. This are the main objectives we follow in the next years. The beginning is hard but we are optimistic.
Romania is traditionally known as a francophone country, but the new generation changed this tradition and almost all young people speak, better or worse, English. As for the recent integration of Romania in the EU, well...we know there is a long way to cover till will get the bright side of our European status. However, I hope this will open new opportunities for us to search new ways of improving our condition and to have an easier access to the most recent scientific results.
We wish you a wonderful new year and, as the following traditional Romanian song for this season says:
Sa traiti, sa imbatraniti,
Ca un mar, ca un par,
Ca un fir de trandafir,
Tare ca piatra, iute ca sageata,
Tare ca fierul, iute ca otelul
La Anul si La Multi Ani!"
"Sorcova*, happy sorcova*
Live your life and get old,
Like an apple tree, like a pear tree,
Like a rose
Strong as the stone, fast as the arrow,
Tough as the iron, sharp as the steel
A happy New Year!"
Patricia & StefanLupus Romania