“Just wanted to share my story of a chronic illness which has no cure and fighting with a spirit for a lifetime. This is more severe than cancer, and we just need recognition about this disease. People with this disease in India are suffering for everything, from education to job. In the US, the same disease – systemic lupus erythromaetus (SLE) has got quota under disability. Understanding about this disease among Indians is what we are fighting for.
I was studying in my school and just had the loss of my beloved father who passed away due to severe pulmonary embolism and severe PHT. The loss was big but we managed to cope up and live. I was in the exam hall for my tenth standard board exam when I felt pain and tenderness in the palm where I was holding the pen. Six months were normal and again I felt pain and swelling in my ankle. As I could not walk, I was carried to the hospital. The doctors were confused and finally, they sent me to a hospital nearby.
I was seen by a pulmonologist and he arranged for series of tests and it took 2 days for the reports. It was my mother and me in the hospital. The doctor was initially silent and told us in a low voice that I have a problem and I need admission. The rheumatologist came to the hospital as a visiting doctor and prescribed me injection through IV for steroids, anticoagulants and other medicines. I was 16-year-old timid girl at that time. I even don’t know what my illness was. I had the medicines on time and gained some weight and got discharged from the hospital.
In 2007, the wolf attacked me again. I browsed the internet and got educated myself about my illness. SLE APLA syndrome. This was the title written on all my prescriptions. I entered my college in 2006 and in 2007 I noticed severe pain in my toes, feet and I literally could not take a single step to walk. I was rushed to Apollo hospital Chennai in the wheelchair. The doctor prescribed me 3 days of Solumedrol injection with 1000 mg each day through Intravenous injection. I was in the middle of my semester exams that time. My body was in complete pain and I struggled to bear it with patience. I shouted in pain became angry. Within 1 week, my body and face became fluffy I lost my hair and I was sent to a vascular surgeon again. He explained me about my clotting disorder and told me I have severe vasculitis and this could be because of my Deep Vein Thrombosis (DVT). My International Normalisation Ratio (INR) value should be tested periodically and maintained between 1 to 2.
The struggle continued. I gained some confidence and started smiling through the tears. In 2008, I started getting crying spells and panic attacks and was sent to a psychiatrist. Yes, I was put on a lot of anti-depressants and mood boosters. I had a tough time sleeping and all my pillow got wet with my tears.
In 2010, I successfully finished my graduation in Biomedical engineering. I was on cloud nine about my success in spite of these hurdles. I got placed in a multinational company. Needless to say the support from my family to keep on motivating me at every stage. I was into a lot of ups and downs. I fell down many times and got up with the courage to fight.
I had suicidal tendencies at times when I spoke to my heart, “You have crossed so many bridges, don’t give up now”. Despite all the negative thoughts I had overcome my disease, I kept moving on with successful education and career which gave me the strength to face life and fight it back hard.
In 2013, I suffered breathlessness and was rushed to a hospital and was diagnosed with pulmonary hypertension and embolism. I was put on IVC filter to prevent clots from spreading to the lungs. That was the hardest phase of life when I started losing complete faith. Thoughts about my dad, how he fought with all his willpower and then finally left us alone, struck me. He has been my hero from my childhood and I got the same illness which he fought. I decided not to leave the fight this time. We lost one life already and I would become a warrior. Though under a lot of stress and weakness, my positivity was creeping as well. It’s not gone yet. However, positivity is inside all of us. We just need to awaken it.
In 2014, I met my partner. My soul mate. His love and support introduced me to a new life with new hopes. Why will I suffer anymore with such lovable and loving husband? Yes, we got married in 2015 and still, the fight with Lupus is on but with even higher spirit.
The power of love boosting me each day to stand up and fight with all my courage!”
Submitted by : Hema Siddharth
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