Posted On: June 16, 2017
In the year 2005, I got into the University for my graduate courses. I was just 17 yrs and my health issues had already started way back before. It was during my first semester when we realized I had S.L.E. Yet, my condition was still manageable, and my first semester went quite well despite the little ups and downs in my health.
However, it was in April of that same year that my real lupus fight story started.
During my second semester, when my period came, it was not the kind that went away after ‘a period’ of some days. The drastic thing about my menstrual flow was that it couldn’t stop. Alarmingly, the flow increased with each passing day. My family and I were unable to find the reason. We rushed to one hospital after another; yes, we tried quite a number of them to find a solution to my sudden nonstop bleeding issue. So, after several trials, without further ado, I was admitted to one of the hospitals where I underwent a blood transfusion. We were told that it was nothing but a mere hormonal disturbance. So, I took some hormonal medication and my condition got better.
I wished and still wish it was that simple—a mere hormonal imbalance.Well, wishes are merely man’s way of trying to escape the reality. Perhaps, they are meant to be crushed hard.
Because that was exactly what happened. My wish was thrown into the bin as soon as I got my period the next month. I experienced the exact same issue again—‘nonstop menstrual bleeding leading to heavy blood loss’.For months, it repeated every single time. The worst one, however, was in the month of August; I lost too much of blood. In fact, I was left with only 3.5 gm of blood; I was in coma for a while.
In the month of September 2005, after a series of admission to different hospitals for almost 3 months, doctors referred me to another city hoping to get better health treatment facilities. And, after a long series of blood tests, alas! I was diagnosed with ‘S.L.E. with APS’. To put it in simple terms, you can say—the SLE I was diagnosed with in my first semester went rogue and had decided to bring a sidekick called APS or Antiphospholipid Antibody Syndrome along with it.
Doctors started the treatment ASAP. I took high doses of steroids; I gained my weight and lost my hair. Apparently, I have lost my beauty and spirit altogether throughout this life struggling process where my own immune system attacked my body; yes, I attacked me. I literally looked like a zombie that came straight out of the Hollywood movies. My friends couldn’t recognize me. They were shocked by the make-over my Mr. Hyde (SLE) had given me. I was shocked as much too, but more sad and disgusted.
WHAT DID I DO TO DESERVE SUCH HELL?
Sucked-in physically, emotionally, mentally and spiritually; my doctor did more than just treating me with medications; he didn’t let me pulled in completely. He talked me out of the negativity that was eating me through. I began to hope and found the strength surfacing again. He helped me develop a positive mindset, reminded me that SLE is just a disease and I shouldn’t let it conquer me. It’s not some curse specifically thrown at me. I was not the cursed ‘Beast’; what I had was simply a sickness. More, I was not alone. I could go on despite the shadow cloaking upon me; for it is just a shadow and cannot swallow me up unless I let it scare me.
There’s light at the end of every tunnel!
I put myself up together again; took all the mess and the pain, the little bit that’s left of me. I started to hope again. Life and me started moving again, trying to forget and keep cruel lupus behind—to never look back.
Life goes on……..
TWO YEARS PASSED. ALL WAS WELL... UNTIL ONE DAY
During my exam, I had a severe headache.
Yes, headaches are common and overrated. That’s exactly what most of us normally think—including me. Therefore, I did not take it much seriously then.
Well, every little thing means something…..that’s what they say.
To put it more clear…
I wonder if anyone of you has been in a situation where you got a spam message and ignored it saying it’s just a spam. And then, afterward, all you knew was that it attacked your software with an crushing truckload of viruses.
That was just me with a headache.
Turns out headaches can be awfully serious symptoms and one shouldn’t ignore it. Because, sometimes headaches bears the signs of brain haemorrhage—yup, just as I did when I ignored mine back then.
First, an unstoppable menstrual bleeding. Then, a simple headache that led to the brain hemorrhage. Can life be any more surprising and vulnerable?!
I went through a major brain surgery. For 4 consecutive days, I lost contact with the world around. I didn’t even know my own existence until I woke up on the 5th day. And, life welcomed me back with some disability yet again—I had a minor paralytic attack.
Dear Zindagi, balloons and needle-free parties would have been the right way to say a ‘hello again’.
I couldn’t remember the things that happened in the past. You can say, I lost my memory. Well, I went bald due to the severe hair loss and gained more weight. It was a difficult year for me. It was quite a testing time for all of us. However, I could not let it defeat me. So, I stood up and started going back to the University despite all the odds I was facing in my life. It took me 2 whole years to come out of the lupus flare. I was diagnosed with Vertigo and Epilepsy during those two years. The first epilepsy attack I experienced was quite life-threatening. But, by God’s grace, my dad was with me, when it occurred and saved my life.
Nevertheless, I managed to get through my exam despite all these. I graduated. And I tell you, the very fact of being able to graduate while struggling with life is simply amazing! And, with much irony, I figured most of us have taken such things as granted. We don’t know that the ‘little’ things are the biggest blessings in life that some people fail to own/achieve.
My whole issue—epilepsy, hair loss, weight gain and all the drastic things continued throughout the following years. However, fortunately enough, I could complete my studies and even got a job!
Trouble seems to come as soon as it leaves. Perhaps, it is habituated to tear people apart and that—here, in this particular episode, SLE is the main actor who plays role of the sneaky disease with a thousand faces. For, in the summer of 2012 I began to have another flare up again. This time it hit my joints. My joints swelled up pretty badly and I had fever almost all the time. However, I ignored these new issues again, as usual. But unfortunately, yet again, it got worse with time; I eventually had to be admitted to the hospital. There the doctors treated me with infusions of steroids and pills—with an increased dose than the last time. Then, came the usual—hair loss and weight gain.
No matter how much S.L.E. bend me, I always try my best to stand up and straight again.
“Fall down seven times, stand up eight.” Probably, I am not the only one to follow this Japanese proverb because on the following year .i.e. 2013, in the month of February, my S.L.E. flared up again. This time, it decided to affect my multiple organs together; I was diagnosed with pulmonary oedema, lupus nephritis and lungs pneumonia all at the same time.
All the worst things started to happen. It was like my worst nightmare coming to life. I struggled for my dear life in the HDU. My doctors made their every move in rush — trying hard to save my life. They struggled hard to save my major organs as many as they could. The battle was both mine and theirs too. After a series of rush hour—tensions, tears, brain straining and life battling processes, I was finally discharged from the hospital. I was supposed to be glad about it, but so much has happened to me in one swift moment that I was not sure if I was sad or happy!
My doctors told me to take good care of my health and wished me well as I was coming out of the hospital door. My water intake was reduced to 250 ml a day; it continued for a year. The North Indian summer climate was not helping me at all, and I really found it difficult to go through the day.
I resumed back to my job as soon as I could. The staffs at my office were really co-operative and understanding; they helped me in every possible way so that I could cope up with all that I had missed during my absence. But, when I re-joined my work, I realized that I have lost my vision. Therefore, I went to meet an eye specialist and I was told I had a hemorrhage in my eyes. He gave me a laser therapy treatment, and luckily enough, I was able to see again. However, that was not the end. For as much as life goes on, so does life’s trouble and struggles.
"I AM TOTALLY FINE NOW", I TOLD MYSELF.
Even my doctor thought the same, so, he suggested that we do a kidney biopsy just in case, for—to the both of us, I already seemed strong enough to go through such test procedure. But “sigue la lucha¡” with the kidney biopsy result out, I was diagnosed with class 3 and class 5 lupus nephritis. I was given immediate treatment. And, by God’s grace, the medication was indeed such a wonderful help for me; it saved my life!
With all the flare ups that I went through, I gained weight, lost my hair and beauty every single time. In fact, sometimes, I would even weigh up to 80 kgs. I’d be all bald after surgeries or would be left with a thin head of hairs. Even till today, my hair has become thin unlike before S.L.E. attacked my health and life as a whole. Moreover, the sneaky disease has affected my skin and my face too. Throughout all these life battling processes, lesions developed on my face. In 2013, it affected my whole skin which resulted in the formation of new skin. Perhaps, I’m lucky to have owned a new skin in one lifetime!
Like every other ordinary girl, I wanted to be fit and well and look flawless! But, the sneaky thousand-faced S.L.E. has ruined my dreams, my life, my chances. It has curbed me from being a typical ordinary girl like everyone else. In fact, one can easily say, the disease is nothing but a ball of disaster that makes life and people miserable.
So, I guess, it’s no surprise that when I was first diagnosed with this awful disease, I was unable to digest it. The very knowledge that it is incurable kept pressing me with the horrid idea that it will haunt me throughout my entire life. And, that made me scared and despaired too.
Maybe, we have fought face to face for too long, or I have grown accustomed to its scars, or I’m already too fed up and tired of being scared and pushed down; because today, I no longer feel defeated, only even more determined to get up and fight every time lupus hits me.
Finally, I have learned to accept it. Today, I have learned to accept that the blows I get from lupus will not be permanent and that it will not cause my complete downfall unless I allow it to.
I have been trying my best to overcome all the odds of life since God knows when. And, I continue to do so even now. For I’ve been told, nothing that stood up time and again after its downfall—can be conquered by its enemy; rather it achieved its strength from the blows and took control of the latter.