Living with autoimmune disease – SLE

Author: Manasi K

Systematic Lupus Erythematosus (SLE) or lupus, it is an autoimmune disease in which the body’s immune system mistakenly attacks healthy tissue in many parts of the body.

When pain comes, avoid locking yourself away

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. I’ve survived lupus for 24 long years. Probably the longest anyone has survived with the disease. Pain could not stop me and I am walking on the path of success. Hope my story brings motivation to you in your battles.

HERE IS MY STORY TO YOU ALL:

I was born on 16th December, 1982 to a middle class family. The youngest in the entire family, most pampered, loved one and like any other child use to love games (though was always weak in it), studies, reading and full of life. My paternal grandmother use to always say to my father that she is too lively and beautiful every fortnight she use also perform the ritual of keeping away the evil eye on me. Cherishing all the attention and love I got from my family I was growing in the family not knowing what written for me in future. The entire fun in life lasted only till the year 1994. My dreams tumbled and my life changed forever. Indeed happiness never last for a long times!

A simple school picnic to fantasy land around December, 1993 and exclusive roaming in the sunlight was the reason of my ordeal. In month of January, 1994, I became very weak, lost my appetite and after the diagnosis was detected with Typhoid. Doctors gave me treatment which lasted for about 5 days and was happy to be back in care of everyone in the family i.e., my aai, baba, dada, tai and aaji. However, due to typhoid I missed my 6th Standard 3rd Semester exams that year.

I recovered from Typhoid and suddenly, a new problem started in my life, it was February, 1994. The appetite issue continued adding to woes along with paleness and further weakness, as per our family doctor 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 twice in between the school lectures / classes in a period of 10 days, finally my parents were called and explained, but as any other parents would do, “I was scolded for my behavior and ask to pay attention in school”. However, the result were the same, no interest in whatever I did, be it studies, games, watching television, etc. the liveliness in me was amiss and the real me was losing in the entire process. Everyone tried their best making me understand the importance of studies by means of stories, scolding me but the health was not improving and I almost lost 5 to 6 kgs of weight. My family doctor opined on my weight loss to carry out further medical test, which were done then and the very next day I was detected with UTI (Urine Track Infection), my health improved though for another few days.

In March, 1994 the 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 given up with no improvement signs in it. The appetite issue continued, I became skinny, unable to swat and seat on floor, drowsiness etc. Finally, it was decided by the family to shift me to Sion hospital on advice of our family doctor, but I was keen to write my 4th Semester or final exams of my Sixth Standard. I categorically remember my School Principal, Mrs. Roseamma Mathew and my favourite math teacher, Mrs. Meera Naik who came to rescue of my family then and informed me that on the basis of my average performance I am being promoted to standard 7th and everyone is waiting for me and wished me for fast recovery. I was more happy meeting my school teachers and the assurance they gave me boost my will power to recover and go back to school.

Now the entire focus of my family was on my health and speedy recovery. Everyone had a same question, unable to figure it out what has affected me? How and Why I am being continuously suffering? What’s written next in our lives for the year 1994? It’s true a family stand on bond which I always term as “Pillar”, any one Pillar is damage, the family is crash. It’s not that I have suffered in 1994 but the entire family be it my brother, sister, father or mother. Truly in our times of distress we learn the truth of those who are our near one and distant relatives.
My parent took the decision to shift at Mahim to my maternal grandparent house as the same was near to Sion hospital and easy for everyone to commute. The medical papers, clothes and the entire two months grocery were packed as it was decided to shift our base from Dombivli to Mahim for my treatment and stay. I remember my cousin who is also a doctor drove us all to Sion Hospital where he I was admitted and allotted the best room by my Cousin and later aai, dada and tai all went to Mahim for their further stay.

TREATMENT AND STAY AT SION HOSPITAL:

In Marathi it is said that to stay away from a Doctor, Police and Lawyers, cause once you stuck up in their world there is no way out. Truly said, 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 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 availability of quick money by debit or credit card or through any other mode of transaction was not available in 1994 the way it is used today. People relied more on cheque transaction and cash, though my parents carried with them some amount of money thinking that it will suffice our need to treat me and I will be back very soon to my home.

The next day, 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 an 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 even hitting the matron in her stomach and running in hospital full of tear in my eyes, when Baba held 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 and by the time I return to my room, my legs use to ache like hell and running from one department to another for medical examination made me feel even more hungry. My mother even when she stayed at my grandmother house had to complete the daily cores and bring me food around 3 pm. So what I use to get I ate even the blackened bananas or smelly 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.

During my stay at Sion Hospital in between my test, a small boy use to peep from the glass watching my daily drama of crying when a matron or nurse came to collect my blood samples or also 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. That my stupid thought and to get further clarification and some solace to my soul, myfather 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 he will be leaving his life for few more day but he had many dreams and a vision to look towards life. He told us that 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? .

The doctor had carried out almost all test to ascertain the exact cause and finally it was decided to carry out the test for which my blood sample was to be sent within 45 minutes at Hinduja Hospital, Mahim. Though I had many relatives none was ready for the same. There priority were more important than my life. I had became more weak and almost lost 10 kgs in the entire process so my baba and aai was always by my bed, wanting to spend each moment of my life. But then who would execute the task of carrying the blood sample to Hinduja Hospital? We need to ascertain the cause of my deteriorating health. As everyone had more priority work in their life and taking into consideration not to trouble other, my baba asked my brother and sister to take up the assignment and just like an elder brother and sister would do they readily out of the love they had for me decided to take the blood sample to Hinduja Hospital. The blood sample was to be continuously stir so there wont be any cloat and the to be delivered in 45 minutes in a vask. I appreciate the task done by my sibling and especially my brother who is really scare of seeing blood and even a syringe. Its difficult to say how it must be felt by them both cause they too were not so big enough to face and understand certain realities of life.

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, but till the diagnosis we had to stay back in Mumbai and to add further I was not even in condition to go back home due to severe weakness.

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 deteriorating day by day, weight was further lost and now it was really hard for me to swat.In the 24 hours of the day I only woke up for food which too I could not swallow.

In this waiting time, I remembered following a bright light and end of it meeting my paternal grandfather (who passed away somewhere in 1986) holding my hand and walking with him. Suddenly, I heard my mother’s feeble voice calling me with the pain followed by the voice of my father“Sonu Wake up, Wake up Sonu”. I remembered leaving the hand of my grandfather and turning back and 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 further referred me to Dr. V. R. Joshi at Hinduja Hospital, Mahim. The waiting period for appointment of Dr. Joshi was almost for months and taking into consideration my health it was advisable not to wait for too long.My cousin, did a lot of follow up with Hinduja Hospital and due to his efforts, a bed was made available at Hinduja Hospital. We had to pay Rs. 5000/- as advance for the same.

As mentioned above, the concept of Credit and Debit card or any other mode of transaction was not so common in 1994 and the Hospital authority refused to accept the payment by cheque. Hence my parents had to pay the entire amount by cash. However, unfortunately the cash amount was short by Rs. 1000/-. Today we just spent Rs. 1000/- on a mere hotelling or any other gift but then it was a big thing for my father who wanted to save the life of his beloved daughter. He actually sort help from all the near and dear one but the replies he received was not an expected one more on his status. I still feel and wish to ascertain the answer from those near and dear relatives, how it was a matter of financial status of my father, whose aim was only to save his daughter’s life? The answer was if you did not have the status to afford such a big hospital you should not treat your daughter in the same. How mean the answer was cant event be thought by that near and dear relative but the scare it left in my heart are still afresh. Though all days are not same and nor are all people the same, to rescue of my family a friend of my maternal uncle stood up without asking any question he lent the money for my hospitalization and wish me a speedy recovery..

LIFE AT HINDUJA HOSPITAL:

The much awaited report was revealed to us at Hinduja Hospital on 4th April, 1994 and I was diagnosed with a rare disorder named SLE i.e., Systemic Lupus Eruthematosus, which is a Systemic autoimmune disease or autoimmune connective tissue disorder. There is no medication for the said disorder or yet the accurate reason for its occurrence is not known, I was given the medication of steroids. In next 3 days my health improved and I was being discharged on 8th April, 1994. My happiness seems to have no boundaries on the day of discharge I decided to make a wish to the setting sun which was quiet visible from the Hospital window and to hear the soothing sound of the waves. I stood in front of the window and seeing the setting was about to make my wish when Dr. Joshi came there and informed us that I should refrain from going in direct sunlight, as one of the cause of this disorder may be 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 who was also suffering from other health issue, but I used to get really very annoyed when her mother use to say that you both are sailing in same boat. During our physical training class, I use to seat beneath the tree watching my school mate enjoying the game of football, kabadi or any other games. My heart use to be with them but I use to be beneath the tree somewhere missing the fun they had.
The situation at home was even worst, some closed relative told aai and baba 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 ? My paternal grandmother used her experience and stood like a pillar and came to rescue of my family. She was illiterate but was sensible enough to understand the situation and literally scolded by parent to be normal in front of me saying “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 8th standard my health was 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 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 Mrs. Meera Naik, I wrote papers in her supervision in her house which was on ground floor. I passed my standard 8 and my life was then never to look back. Gradually, there was also some health improvement.

I wish to thank my famly, school teachers, Dr Joshi, Dr. Balakrishnan and few school mate especially Padmashri and Pravin who lent me their note whenever I missed the class. I wont have been today if this people have not stood by my side then 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:

The trauma of my health issue now was not known to all except for few school mate who to were with me in the same college but had their own set of friends. I too had my dreams just like any other teenager be it for the special someone in life or fun as a teenager.. But I have one thing so clear in mind which was imbibe in this entire process of health that I have to achieve a position in my life where I wont be dependent on anyone. Hence at time I had kill my dreams and walked on the path of education Love was kept far away as the question always bother me was “What will hapen if someone come to know about my disorder? Will I be accepted? The feeling of rejection was something haunted me.

I enjoyed my college days with my friends, somewhere the lively me was coming out, I 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. I could not like a child cry, 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 out loud and asking the almight 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 3rdTime, the cause was my GRADUATION IN LAW.

MY PRACTISING DAYS:

After getting the Sanad from the Bar Council of Maharashtra and Goa, I was associated for a few days with Mrs. VrindaKulkarni, Advocate for learning my Advocacy under her guidance. Because of the family matters, I use to be disturbed and almost after 9 months i decided to joined Somandy & Associate, with Mr. Burzin Somandy. 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 and 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 their 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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