The story of Gjurgica
Today is my 36th birthday. Three years ago, I was diagnosed with a rare disease – “Pulmonary Hypertension”. When this happened, I didn’t believe that I would ever turn 36 and that I would overcome the statistic of 2.8 years. I’m living a life without a proper treatment of my disease.
It all happened unexpectedly, during a typical winter’s day. The snow was falling beautifully and the snowflakes were dancing. It was all magical, but for me it turned into a nightmare. Out of a sudden, I fell on the ground with a huge pain in my chest, losing my consciousness. I wasn’t aware of what was happening.
It felt like the whole world has crashed on me. As a twisted mirror – the same me but now
I have no strength, i can’t walk…1, 2, 3… I’m breathing heavily; I can’t even take a breath.
My nightmare has begun. When I was 33, my life has changed for 360 degrees. From an active and young woman, I turned into a disabled person whose disability in unnoticed until I start walking.
Fortunately, I was diagnosed on time. But unfortunately, I come from a country where there is no treatment and no expertise, and people are unaware of PH.
The disease doesn’t reflect externally. It works mentally because of the change of the life course. First of all, you relatives start to have a doubt. They start to think that you are lazy and that instead of working you want to sleep all day. However, they are unaware that every step of mine is a challenge for me. I am unaware whether I can make the next step or I will fall. There are some changes too – such as hair loss, swelling of the legs, stomach. And all that you hear is “there is nothing wrong with you… IT is all just stress, anxiety… Be strong…” But how? You are becoming a hostage of you own bed. Your sleep is where you can run to, but for your condition, the sleep is just a luxury. What you want the most is to fall into a peaceful sleep, but in reality you are drowning in your sleep and you are waking up breathless.
I didn’t know anything about this disease. I didn’t know that it is fatal and that there isn’t a cure for it. I didn’t know that if you don’t receive a proper treatment it can lead you to death. The only medicines that I could get in my country were beta blockers, but they didn’t do any good for me. With a large dose of sedatives and depressants, I became a shadow that only survives.
However, at the end of this dark road, I came to some new tests and receiving therapy, the controversial one – Viagra. Even today, some doctors laugh about that, but that is my cure, my savior that keeps me into breathing, and if you think better, it is just a simple mechanism, a drug that opens the arteries of the lungs and allows the body to receive oxygen.
Therefore, I started searching for PH; the social networks became my home, the family that I found searching for salvation. With the help of our PH family, I learned a lot: how to deal and how to live with a deathly disease. So, I started to live on a PH planet, in a PH family in PH Europe. After a year, PH Macedonia based an association for the patients from my country –A Moment Plus. Why was it called A Moment Plus? – Because every moment is important for us, and it all depends on time. Thanks to PH Europe and the support from the people who share the same fate with me (the people who understand me and know that I am not lazy and that i cannot walk, that I am an invisible disabled person, the people to whom I should not explain why I cannot sleep at night or that I spent a whole day in bad), thanks to them, I began my mission – Improve awareness and getting familiar with PH.
This is how my story begun – the story of the mermaid who lives between two worlds and doesn’t belong to anyone.
Once upon a time, I was a woman, a Woman who was walking, climbing, singing, dancing…Later came some bad horror weather …I became mermaid…Now I am a mermaid.
A mermaid in the sky,
I can’t walk any more, I can’t breathe anymore, because I need sea. I live in the sky; I’ll die if I don’t find the sea that is my home now. I need oxygen.
Please give me the oxygen to live like a woman, not lake a rare mermaid who is trapped in the sky breathless.
Yes I am mermaid in the sky….
Even though it was hard, I have learned how to live with my disease and to share my problems with my PH friends, my PH family. But if it wasn’t for this, I would have never met all the people who I know today, and even though I haven’t met some of them, I feel them as close to me. They are the reason I’m writing this story now.
I hope that soon there will be a cure for this severe disease and that there won’t be lost friends. This is a challenge for sure and a mission to live with. We should fight in order to raise awareness for PH and to be equal in the society because with a proper treatment we would have, to some degree, a more normal live than a live that makes us lazy.
To connect with others who understand join the international PH community: https://www.rareconnect.org/en/community/pulmonary-hypertension