As a 30 year, young (as I would like to be called) woman today, I look back at the life I have been through from every aspect and realize it’s been a roller coaster with the situations I have faced.
By the age of four approximately, I started having symptoms such as an extreme high fever that barely went down, severe weight loss, abdomen enlargement, and extreme hair loss. No solid or liquid would last more than few minutes in my system before my body rejects it. I was then diagnosed with systemic lupus erythematosus, an autoimmune disease in which the immune system attacks its tissues, causing widespread inflammation and tissue damage in the affected organs. I was too young to understand what was happening, but thankfully my mother gathered as much information she could find about the illness through meeting with doctors or from books and pamphlets. Google was not an option back then.
“When I was diagnosed, not many children here were detected with it; therefore everything was a new experience to us; since we did not see other children here with it. Trial and error kept going on for a few years until my mother mainly and families understood the dos and don’t to keep this illness stable. I then grew up following these restrictions to be able to live a normal life. Yet, I always stood out in many situations, such as not being able to join the school swimming classes always, nor being able to always join in the outdoor events such as camping and sports day. The reason was; a lot of sunlight causes the disease to flare up. I constantly received questions like; why I have thin hair or why I had to always wear sunglasses when playing outside. I had questions such as why did I not swim with the rest of my classmates and why I skipped out on activates at times. I never knew how to answer because, I did not even know what was wrong with me, so how would I even be able to explain it to others?”
By late elementary the life I was living was the “normal life” but I always knew there was something different in me, I just never managed to understand it well. Since I was on remission during that time, which means that the person with lupus is taking medications and is doing well with no evidence of lupus manifestations such as arthritis, rash, kidney involvement. I realized that I could have an extremely beautiful life as long as I accepted lupus since it was my other half; it is what makes a unique version of myself!
I led a very joyful, mischievous, adventurous, and fun-filled life for years thankfully. Until the year 2014 came along. It was a year of extreme emotional, physical, and mental stress. Why you may ask? Because it was a year that was filled with EXTREME excitement, anxiety, joy, sadness, shock, and all the emotions you can think of combined. This caused my stress level to shoot up leading to a severe lupus flare-up. The flare-up led to vasculitis it is an inflammation of the blood vessels. It happens when the body's immune system attacks the blood vessel. Vasculitis can affect arteries, veins, and capillaries. In my case, it attacked the brain vessels leading to three strokes. The strokes left my body paralyzed. I lost my Peripheral vision: Side vision, and the ability to see objects and movement outside of the direct line of vision in my left eye.
My family sent me to Germany for treatment, there I was told to expect and accept if it happens, the inability to drive again, or to go back to work one more time, I was then told that continuing my master's degree (which I have begun before getting my stroke) would be unadvisable and dangerous for my case. I remember my extreme anger at the doctor and his team, refused to accept what he said. Unfortunately, I was rude and yelled back, “you do not tell me what I can and cannot do, I believe I will and you’ll see. With my faith in God, family’s support, and determination I will do everything you said I wouldn’t”. Time passed by, we spent almost a year in Germany, between chemo doses to reduce the inflammation of the vacuities and rehab center to walk. It was hard, uneasy and there were many moments where I broke down and gave up. The month before heading home, I contacted my university to continue my degree and they approved. I came home and went back to work driving alone. All I remember was I had an annual check-up after my graduation and I went to my doctor laughing, telling him I had something to show him, it was a picture of me holding my degree.
Time passed and my health got a lot better, but I still went to the hospital for annual checkups and immune system boosters at times. During this year, I got to know many women who have lupus, some who have just recently been diagnosed, and some who have been diagnosed for years. It is then when I realized, I want to be there for them, I want to show them they are not alone, we are one family and a community that understands one another. I want to help them feel and understand that they are not alone and we all support each other. It is then when I decided to initiate a WhatsApp support group; where we discuss many things and became a part of a family and community. Believe it or not, we all came to one conclusion that we always thought we knew enough about the illness but we learned more and more through the group since there are no two individuals with lupus that are the same.
I then realized it is not enough; we need to educate ourselves, our families, and the people around us more. I cannot change the world but I can try to help lupus patients to feel less pain and sadness when comments are thrown their way about their thinning hair, skin rash, and weight fluctuations. That is when I decided to put myself out there to the world and society through Instagram through the account @zone.goodvibes for two main reasons in my head.
1. Lupus warriors can live a life that’s full of accomplishments, fun, and adventures just like any other person.
2. To help lupus patients understand what they are going through, and to let them know they are not alone, we are all here to support one another.
We are all born special in this world in our own way, and my uniqueness came through my other half; Lupus only after we made peace with each other. This is when I started my journey to try best to help other lupus patients find themselves and make peace in accepting their other half-life the same I did. I aim to spread awareness about Lupus in Oman since there is a lack of information. I dream that the day will come where Lupus patients will be understood and without any judgments. Lupus made me who I am and it is the reason I am here to spread good vibes.