I love to write, about everything but I have never openly written about my scleroderma, lupus diagnosis. When I was diagnosed, I wanted to tell others about it to raise awareness for an underfunded disease, a disease which is not seen. I wanted people to understand but all I got were demeaning eyes, pity looks that made me crawl into a shell, where I became hostile and guarded. Guarded with my feelings, to my scars.
For the ones, who have never heard about these diseases, Lupus is a long-term autoimmune disease in which the body's immune system becomes hyperactive and attacks normal, healthy tissue. Symptoms include inflammation, swelling, and damage to the joints, skin, kidneys, blood, heart, and lungs and Scleroderma is a chronic connective tissue disease generally classified as one of the autoimmune rheumatic diseases. The word “scleroderma” comes from two Greek words: “sclero” meaning hard, and “derma” meaning skin. Hardening of the skin is one of the most visible manifestations of the disease.
Fun, right? Haha
People and even doctors not yet have good knowledge on these diseases, when I was diagnosed, a doctor told my family that 2 years maximum will be the time frame of my existence, and this was 12 years ago. My mindset on life changed that day, and no it was not one of from the movies that I started to jot down a “bucket list” of things to do, I did what any normal person would have done, I crawled inside a dark hole of loneliness and depression and wherever I went, the idea of death followed me.
I questioned the higher power,
It finally took me 12 years to pick up a pen and write, write about who I truly am with no shame, with no regrets because if this had not happened to me, I would not have been this amazing strong woman that I am today. And no it did not happen like it happen in the movies, that a prince charming comes on his high horse and saves the female lead, to be honest there is no prince charming in this story, well not yet. I am my own HERO that changed her mindset from Why Me to “Why the hell not me”? And saved herself by having a strong support system to having the authenticity and vision of saving herself, not giving up cause I believed in my gut that I have this disease because I have a purpose to serve and that purpose is to serve the ones who are going through what I went through and I still go through, to this very day.
This life, the second life as I like to say, comes with many experiences, many changes, constant changes. In a second you can go from 10 to zero in energy, from having the best day ending up in ER, it’s all unpredictable, but isn’t that what life is all about, isn’t that what keeps it interesting?
The best part of having these lows, is, I fully appreciate my good days. With no cure in sight, it depends only on how you react to it and being mentally stable, happy and content makes a big difference because no matter how your body is acting you can suffice it with your mental health. In my case, being humble, empathetic and loving who I have become, taking zero talk from everyone is the best remedy to having this incurable disease because you can’t gamble on how you want to live your life, you don’t know in which state you will wake up the next day.
I always knew I was different, but now I know that I am strong, strong enough to embrace it, strong enough to raise a voice, strong enough to start an awareness.