My Battle With Autoimmune Disease, Lupus

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Auhor: Does not want to reveal her identity

When pain comes, avoid locking yourself away – for a while, give yourself permission to sink into it, feel it, deal with it, learn what you need to learn and when you’re ready move on – it will be ok. So today all is well in my life, the pain could not stop me and I am walking on the path of success……

HERE IS MY STORY TO YOU ALL:

I was born as a healthy baby in December, 1982.  The youngest in the entire family, most pampered and loved one. Like any other child use to love games (though was weak in it), studies, reading, and full on with life. However, the entire fun in life lasted only till the year 1994. My dreams tumbled and my life changed forever and ever.

A simple school picnic and exclusive roaming in the sunlight by me was the start of my ordeal. In month of January, 1994, I became very weak, lost my appetite and after the diagnosis was detected with Typhoid. Treatment lasted for about 5 days and was happy to be back home in care of everyone in the family. However, due to typhoid I missed my 6th grade 3rd Semester exams that year.

I recovered from Typhoid and suddenly, a new problem popped up. The appetite issue continued adding to woes along with paleness and further weakness, as per our family doctors view it was the side effect of Typhoid and I was given some tonic to recover further. However, the recovery as such was not happening and the result was I felt asleep in school lectures / classes in a period of 10 days twice, finally my parents were called and explained, but as any other parents would do, “They scolded me for my behavior and ask me to pay attention in school”. However, the result were the same, no interest in whatever I do, be it studies, games, watching television, etc., Though on day to day basis I was scolded, the health did not showed up any improvement and I had almost lost 5 to 6 kgs of weight. As opined by our family doctor, my medical test was done the very next day and I was then detected with UTI (Urine Track Infection), my health improved just for another few days. 

In March, 1994 my health deteriorated and further worsen with no relief to me health wise. Everyone at home thought that I am just trying to seek attention and was running away from my studies. I was punished for the same as well, but my health had already gave up with no improvement signs in it.  The appetite issue continued, I became very thin, was not able to seat down on floor, drowsiness etc. Finally, the family doctors decided to shift me to Sion Hospital, but I was keen to write my 4th Semester or final exams of my Sixth Standard. To the rescue of my family, my School Principal, Mrs. Roseamma Mathew and my favourite math teacher, Ms. Meera Naik came and told that on the basis of my average performance I am being promoted to standard 7th and my seat for 7th Standard is waiting for me .. I just need to go and take proper medication and be back. Who knew that my life was going to change forever and ever.

Everyone in the family was more keen on my health now as no one was in a position to understand, how and why I am being affected with such a problems and what next for each of us this New Year 1994 has brought? Its true a family stand on bond of each one to which I term as “Pillars”, any one Pillar damage, the entire bond crash down. It’s not that I have suffered in 1994 but the entire family be it my brother, sister, father or mother. Truly in your distress you learn the truth of the one called as your blood relation and the one who is far relatives.

We decided to move our base from Dombivli to Mahim, where my grandmother stays for my treatment. We have decided to stay at my grandmother’s place since it was near to Sion Hospital and other in family could commute well. The medical papers, clothes and the entire 2 months grocery were packed along with us all. I remember my cousin who is also a doctor drove us all to Sion Hospital. Later from there aai, dada and tai all went to Mahim house for their further stay. Myself and baba where at sion hospital. Thanks to cousin who also being Doctor got me a well off room in the Hospital. Else the general ward was worst, though people do stay there.

 TREATMENT AND STAY AT SION HOSPITAL:

In Marathi it is said that you should stay away from a Doctor, Police and Lawyers, cause once you stuck up in their world there is no get away, very true saying. Isn’t it? The pain and worries in the eyes of my parents can never be forgotten by me. I still remember the sleepless night they both had due to me and my health issues, the prayers offered by them for me to the almighty and their world just revolved around me. It was me the most important person for them. What’s next in our life? The system of debit or credit card was not available in 1994 the way it is available today. People dealt with cheques and / or cash. We did carry with us some few money thinking that it will suffice our need to treat me and I will be back very soon to my home.

The next day after allotment of bed and room at Sion Hospital, Dr. Lokeshwar visited me (Dr, Lokeshwar also happened to be my cousin’s senior). On examination of my health and the family background, he has suggested many medical test, to ascertain the cause of my deteriorated health. Frankly speaking as a Eleven year old, I hated Dr. Lokeshwar, thinking him as devil, who has suggested so many medical test for me. The next five day where full of test, some blood, urine, stool, chest x-rays, eye test, ECG, scan, sonography etc. Each and every day, the Dr. Lokeshwar would suggest some new test and Dr. Nismita use to come to collect the blood samples, initially I co-operated but the day to day ordeal I was irritated and remember it categorically of hitting the matron in her stomach and running in hospital full of tear in my eyes, when Baba hold me and told me to stop and co-operate. I used to cry, why me? The said question even today brings tear in my baba’s eyes.

 The breakfast in Sion Hospital was served around 8 to 9 am which comprised of banana and egg, but I use to leave my room prior to it for the prescribed Medical Examination. By the time I return back to my room, my legs use to ache like hell and the daily running from one dept to other for medical examination made me feel very hungry. Till my mother after completing all the daily cores at my granny’s place returned to hospital, it use to be around 3 pm. So what I use to get I ate be it the blackened bananas or badly smelling and chilled egg at the Hospital. Today, my nausea towards egg and banana is due to whatever I did for my hunger at Sion Hospital.

At Sion Hospital in between my test, a small boy use to watch my daily drama of crying when a matron or nurse came to collect my blood samples or sometimes when I use to play card with my father. Initially I use to thing the boy as a thief, who wanted to steal something from my room. My father once confronted him and learnt that  the boy was taking treatment for Cancer and had came to hospital from Jalgaon. I now don’t remember that boy’s name though.

The boy was full of life and energy, though he knew that his life his for few day but had a powerful willpower to look towards life. His story was he was the eldest amongst the sibling, was in last stage of Cancer so brought at Sion for treatment, mother use to do household works at Jalgaon and father a drunken. His dream was to learn a lot and give his mother a well off life. He was well aware that his life was hardly 6 months, but had big dream for self and his mother. Today seating at my office desk my mind goes to boy and a question struck me is, “whether that boy was so lucky to execute all his dreams? May be no.

Days where passing in the hospital by meeting new people and at last a final test was advised by the Doctor to be done, for which my blood sample was to be sent within 45 minutes at Hinduja Hospital, Mahim. Who would execute the task of carrying the blood sample to Hinduja Hospital? When my brother and Sister where assign, though there were many elders in the family not so busy with their lives and could have easily done or executed the task. Anyways, the blood was collected in a vask to be continuously stir up so that the blood does not get cloat and the same was to delivered within 45 minutes at Hinduja Hospital for further testing. The job was well done by both my brother and sister. I still don’t know how they felt then?

Next day after the sample was sent to Hinduja Hospital, I was discharged from Sion Hospital and Dr. Lokeshwar told us to follow up after a week time to his clinic at Dadar.

I was happy to go at my grandmother house, though I wished to visit my own house at Dombivli, However, I was also pale and weak and other reports were awaited as well.

DAYS AT MY MAHIM:

The transition period after Sion Hospital, at my grandmother’s place waiting for the report of Hinduja Hospital was the worst period. My health had already gave up and by then my weight which I lost was almost 10 kgs. I could not sit down on floor or even could not bend my legs, it was very hard for me to go for toilet. The weakness was so severe that I use to be almost for the entire day asleep in the bed.

I remembered that I was so fast asleep and following a light in my dreams and at the end meet my paternal grandfather (who passed away somewhere in 1986) holding my hand. I was about to walk with him that I heard my mother’s voice though it was feeble initially but gradually it became clear, the voice of my mother was followed by father. They were calling me Sonu Wake up, Wake up Sonu. I suddenly opened my eyes and my brother, sister, Mother and father all were surrounding me with tear in their eyes waking me for past 10 minutes. Aai-baba still call that phase as returning from death.

Almost all my reports were normal and finally the eagerly awaited report was out which was going to be my destiny for life. The report was shown to Dr. Lokeshwar, who has advised us that the problem which I suffered was treated by Dr. V. R. Joshi at Hinduja Hospital, Mahim. The appointment for Dr. Joshi was next to impossible and hence after lot of follow up by my cousins and through their efforts, we came to know that one bed was available at Hinduja Hospital and we had to pay Rs. 5000/- as advance for the same.

As told earlier then the concept of Credit and Debit card was not so common. Hence, we had to pay by cash and a simple Rs. 1000/- was less with us. We ask for all the near and dear one for the help but the answer came was not at all expected, it was pertaining to our status. If we did not have the status to afford such a big hospital, I should not be treated in the same. Gone are those day but the memories do haunt me till date. Somehow an unknown person came to our rescue, who happened to be my uncle’s friend and on his word had helped us with the money, this was how I got admitted to Hinduja Hospital.

LIFE AT HINDUJA HOSPITAL:

The Black Day arouse on 4th April, 1994, the much awaited report was revealed to us and I was diagnosed with a disorder named SLE i.e., Systemic Lupus Eruthematosus, which is a Systemic autoimmune disease or autoimmune connective tissue disorder that can affect any part of the body.  My medical doses contained “STEROIDs”. I still celebrate 4th April as a Black day of my life.

Within next 3 days my health improved and I was being discharged on 8th April, 1994. My happiness seems to have no boundaries that day. I love sea shores and most importantly the sun sets, and as a memento of happiness… I decided to make a wish to the Setting Sun and was looking out of the window along with my Baba and before I could make my wish, Dr. Joshi came there and informed us that I should refrain from going in Sunlight and one of the cause of this disorder was direct exposure to ultra violet rays which are emanated from sun.  Further, I was told that just like Diabetis and any other disease I will have to live with this Disorder for life or rather till I die and be on medication.

LIFE WITH THE DISORDER:

As promise by my school teachers, I was welcomed back but life was not normal thereafter, I was on medication on daily basis. As the entire world know that Steroids has its own side effect and I was not going to be spared by the said side effect. I gained weight, my face looked like Moon face, hair loss etc. and to add to it few school friends started teasing me. Till date I am not able to understand whether my annoyance was on my friend or on my conditions?

I remember a school friend Kshamata, who was also suffering from other health issue, but I used to get really very annoyed when her mother use to taunt that you both are sailing in same boat. But, during our school computer class visit, she (Kshamata) and me use to sit beneath a tree and watch other school friends playing games, my heart use to be with other school friends playing football and other games. Thought physically I was beneath the tree.

The situation at home was even worst, some closed relative told mom and dad that my life is just for 6 months, how insensitive was that person? On the comment of that insensitive person the entire world for my mom and dad started revolving around me. Even if I called my mom to give me water she use to run and get the same for me as if there was an emergency at my Home? To rescue of this situation came my Aaji (paternal grandmother). She badly scolded my mom and dad, saying that “even if we believe her life is only extended to another 6 months behave as a normal person and stop crying in front of me”.

Gradually, the family came to normalcy, but the outside world was not in the hands of my aaji, I have to fight each day, every minute and second with their special comments on me. To add on my woes, the steroids side effect i.e., water retention in body, got me flare on my hands (rather ugly flares). My favourite sleeve less frock and dress suddenly looked very ugly on me because of the flare on my hand, the people around me knowing my health issues where much keen to know how it happened? My first lie to self was, it is nothing but since I am becoming thin, these are the stretch marks. Thanks for the advertisement of stretch free which I saw on the television. I learnt one thing that day and it was instead of making my problems propaganda and gaining sympathy from the world, which is not required by me and reserved for someone really needy, I will become independent and show the world that even I am someone. MY LIFE GOT CAUGHT INTO THE HALF SLEEVES DRESS THEREAFTER.

It is not that a person having some medical problem or with special abilities need to be looked always with sympathy, GOD has created all of us with some ability to do something on this earth. We all are here for some purpose, but till that purpose end, we won’t get the MOKSH. This Strong belief in my mind, I started hiding my problems from the world around me. Now you may say that I may be wrong, but it was not a logical sense for me to gain undue Sympathy from the world around me.

In my Standard 8, my health further deteriorated, the condition affected to such an extent that I was not able to climb the stair case. My school classes were then conducted on 2nd Floor and it was then next to impossible for me to attend the school. My father my back bone of life, stood up and took a decision to lift me in his arm and climb the stair case. The daily exercise by my father and alternatively by my brother helped me to attend school classes. The question of exam writing was solved by my favourite School Teacher Ms. Meera Naik, she gave her own house, which was on ground floor, enabling me to write my exam. I passed my standard 8 and my life was then never to look back. Gradually, there was also some health improvement.

With the help of School teacher, family, Dr. Joshi and most important few friends, whose name I wish to write is Padmashri and Pravin Nair. Cause without the notes from these friends, I would have not passed my exams. Thanks a lot to all of them. Though everyone may be busy with their lives today, I do remember my school teachers and friends.  It was next to impossible to enjoy my first ever HAPPIEST MOMENT of life without the support and help of my FAMILY, SCHOOL TEACHERS AND FRIENDS.

College Days:

Like any other individual rather teenager, I dreamt of having a boyfriend in my life, who will cuddle me and be with me. But Dreams not always turn into reality, I had many friends, out of which many were BOYS as well. On some I had crush and some had crush on me. Whenever some person who loved me (rather had crush on me) ask me, my mind use to immediately respond say YES, however, brain use to reject saying or rather reminding me, “WHAT WILL HAPPEN WHEN HE KNOWS ABOUT MY DISORDER?” I myself had refrained my heart many a times to be happy to the so called HAPPINESS called LOVE.

Though my friends used to call me a flirt, I never told them what was in my mind then. My heart and mind then had been captured in the so called walls raised by my brain. Apart from this distress in my mind, I was happy with the entire college life. I enjoyed completely! Made many friends and also retrieved many school friends. Days passed and my 2nd HAPPIEST MOMENT arrived and that was passing the graduation. I still remember it was afternoon when Madhura gave me a call that the results are out. I still can feel the BUTTERFLY in my stomach. Madhura asked me for my examination seat number and with lots of fear I gave her the same. After around 2 minutes Madhura called me that I have cleared my exams in FIRST CLASS. I fell on the TOP OF THE WORLD. I asked my brother to accompany me and when on the terrace climbed upon the Water tank (it being the highest top) and SCREAMED I HAVE PASSED MY GRADUATION.

I always wanted in my life to be a professional, either a doctor, Chartered Accountant, Company Secretarial or A LAWYER. Since in my graduation I choose Commerce as my field, the former i.e., Being a DOCTOR was ruled out. I decided to be a LAYWER.

My Life at law school first year was very good, but in between my health again started troubling me and now the disorder had taken its main chunk that was my KIDNEY. To recover from it my doses were HIGH on STEROIDS. The Night mare began, almost for five to six years the SLE wave which was silent again rose up and to such an extent that I was given injection, medicines, which were very unbearable. The Pain I used to suffer was intolerable. Once you are big or crossed certain age, you even cannot show it to the world. My entire dreams were tumbling and I was very disturbed then. My flares on hands grew larger and I had to restrict my life further to FULL SELVES dress.  I felt like shouting on the GOD, WHY ME? People around me in the College were even worst. They teased me to such an extent that at one point of life, I felt like committing suicide. I was really very depressed. However, to my rescue came Mrs. Srividya Madam our principal of law college and few friends like Priyanjali and Sandhya along with my family. They stood by me and I could go through this bad phase of life.

I was now HAPPY for the 3rd Time, the cause was my GRADUATION IN LAW.

MY PRACTISING DAYS:

After getting the Sanad from the Bar Council of Maharashtra and Goa, I for a few days associated self with Mrs. Vrinda Kulkarni, Advocate for learning my Advocacy under her guidance. Almost after 9 months being dissatisfied with the outcome of the association, I left her job and joined Mr. Burzin Somandy, Life with Somandy sir was rocking, I learnt many things under his guidance and would term him as a first person to boost my Career. I daily handled matters ranging from High profile to normal matter and was very busy in my life. But then was my health going to leave my back? NO. It took a stole on me again, this time not due to the disorder but because of the medication. The heavy doses of steroids taken by me for curing my kidney ailment, had affected my health and I started limping. I told my boss about my conditions but on day to day basis I was called as DISABLED person, which annoyed me and my life’s first wrong decision was taken by me or right one, I cannot understand till date. I took a break in my career for 2 months and got Joint Replacement surgery done. The 2 months of my life, wherein I used the crutches. Again people’s expert comments cannot be given away. I still think, why can’t a person just mind his business? The struggle and the comments from people that now for my life I will always need support and the thought that I will be dependent!

The decision of undergoing the operation was very big not only for me but also for the Doctor, I was asked to do many test and finally Dr. Vivek Shetty, decided to perform the surgery. It was 8th March, 2008. After almost 2 months I could stand on my feet without any crutches. In between the extensive physiotheraphy and medicines were undertaken by me.

After the operation, I took a big decision of my life, it was quitting the practice and got self a job in some of the reputed companies. Without waiting for a long time, I got job in one of the Reputed Service Sector Industry. I learnt a lot of things and met many new people. It was some time hard to cope up, but I never gave up. It was all because of a school teacher who in one of our classes told us that PAST IS DEAD, FUTURE IS TO COME BUT THE PRESENT IS WITH YOU… WHEN WE PLAN OUR PRESENT THE FUTURE IS DEFINITELY GOING TO BE A BIG SUCCESS.  On the basis of the teaching and the blessing of all elders, I walk on the path of thorn and today the rosy floor is waiting to greet me. Just like the finger on our hands the days are not going to be the same every day, sometimes happiness and other the bad phase.. but living with it and smiling on each situation is definitely going to reduce the pain of what we don’t have? This is what a human nature.

I may not know what my future has to offer me, since I don’t hold a crystal in my hand. But indeed Life is beautiful for me.. I think I am so lucky to be with my family and the pillars are so strong that today flaring up so well in my life and career… any difficulty can be curbed by me.

I just learnt one thing in this all,

Life is full of challenges, its how you respond to them that makes a difference to your life.

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