The After Story!

Hey! Been a while, huh? So, you must be wondering what next after the big transplant. You’ll be delighted to know that my story doesn’t end here. That, There is more to the story than there has ever been. Life works in mysterious ways. Its nerve wrecking in my case mostly. I was really happy, you see. It felt like the most amazing feeling in the world. I felt more alive than I had ever been in my entire life. I had this feeling that now was finally the time for me to shine. Little did I know that life had different plans for me. That my life wasn’t ever going to be normal. Ever wondered what the word normal really means? The term means different things to different people. Its totally different for a person like me who is battling with an auto immune disease. For example, for me getting to drink an entire glass of water would mean normal. Its equal to a luxury
I can’t afford. I am a stage 5 CKD (chronic kidney disease) patient. It means my kidneys have stopped working and my source of survival is a machine that filters my blood and removes the water from my body. Truth be told, dialysis can be really painful. But trust me when I say this, after my transplant, the amount of excruciating pain that I had to go through is far much worse than dialysis. I would take dialysis any day. So to begin with, in my previous post I wrote everything about my journey and my transplant. It ended on a very happy note. But. Two-three weeks later my body started showing its true colors. It started rejecting my new kidney. I was admitted and had to get an anti rejection treatment done to try and save the kidney. It worked for a few days and was back to rejection. Soon, several kidney biopsies and anti rejection treatments were done. Nothing could salvage the new kidney. We even tried plasmapheresis but nothing could save it. I faced rejection 5 times within the 6 months post transplant. In the end I got CMV viremia as well. The treatment for rejection and cmv viremia are totally opposite. There was no way we could salvage the kidney. There is only one hospital in the entire world that has created a vaccine to treat this kind of a problem. Every time I was admitted I had to get a central line done in my neck for the treatment and kid you not, getting a central line catheter can be really painful. A catheter is placed into a large vein that helps in intravenous therapies. In my case it was used for the ivig infusion. Every ivig infusion caused major migraine attacks in my case. The infusions took an hour long and I had to take 5-6 bottles per day which meant 6 hours maximum. The nerves on the side of my forehead felt like they were going to explode. I couldn’t shake the feeling of tearing them apart with my own hands. My eyes hurt and sometimes my entire body. My blood pressure would strike up and sometimes I would even get a little bit of temperature. These were mostly all the things that happened during the ivig infusion. I had to get a central line catheter done 5 times post transplant to treat the rejection. each time it kept getting worse. When my doctor decided to try plasmapheresis which is basically a process where the plasma is separated from the blood cells and replaced with albumin. After every plasmapheresis session I would suffer from a really bad stomach pain along with body aches. I was glad that my brother would stay with me while i was at the hospital alone. I would feel so lonely and tears would roll down my cheeks involuntarily. Only one thought kept bothering me. “why me?, why so much pain” oh, the unending, intolerable pain. My insides were eating me up. The 5th time when things had gotten worse and the treatment could have killed me I took a step back. My blood pressure had strike up so bad that I wasn’t supposed to survive it. My head was going to open up. The pain was killing me. I kept crying and begging them to give me something to make the pain go away but nothing seemed to work. My reports were bad. My condition was getting worse. Hematuria, acute attacks on my surgical site etc etc. In the end they had to stop the treatment and take a break. During that break i thought a lot. I realized that if I am breathing right now, its probably for a reason. My reason of existence must mean something. Maybe, after all, there is a grand plan for me. Maybe I was born just to give out to the rest of the world. Just give. You know what I mean? Today, its been one year since my transplant failed and I have been on dialysis since forever. but trust me when i say this, I am fine. I am okay. i have accepted life the way it is. Yes. I will have to be on dialysis for the rest of my life, but that’s okay too I guess. There is a quote from my favorite movie which states, “life will be over before you know it” And so I say, breathe and live like nothing else in the world matters. Do it while you can. Everything and everyone around us is so so beautiful in their own specific ways. My pain, my sorrows, my experiences and my life has only made me stronger and wiser. I am proud to tell you that I am a 20 year old whose life depends on a machine but finds life from things like art and the people she loves nearly and dearly. so, live better. Every. Day.

The Burden Of Emotions.

Life was falling apart. Everything hurt a little too much, every emotion became intolerable. She felt used and vulnerable. Every memory hit her hard. every feeling ripped her apart. She felt hollow and empty. She started to grow in it promising herself she would never feel anything ever again. Lost and lonely she felt heavy carrying all the burden of emotions that brought her down so she decided to let go of every feeling. Every encounter spoke louder to her than the others. Every time it left a deeper meaning that forced her to question her sanity. Emptiness, calm and drenched in sorrow of never fitting in is what started to embellish her. Life is easier emotionless, she told herself. She learnt to let go of the sadness, frustration and endless pain.. everything that haunted her in every moment of every day and night. Maybe all that was needed to stop the agony was to feel numb. All the emotions drove her insane, all the pain and sorrow was killing her from within. She felt angry with life, with herself. She lay in the dark for hours, tears rolling down, it felt like it was the end. Slowly, she let the pain grow in herself. She promised herself that she would burn down every thing that made her who she was. She buried her old self that night. She build walls around her thicker than ever. She was never going to let anyone in ever again. All she wanted was to stop feeling, to never cry again, to let go of expectations and build herself in a way where nothing could ever hurt her again because she knew she had no thoughts at all. Just an overwhelming desire to never feel again. .

Don’t Try_

The Ocean In Me!

I have in me, a tranquil pride
Of the life I hold in depths of me.
What lies beneath are like the shells you see.
Peaceful In my shoes, where I stand.
The ocean has its caves,
I am incapable of finding.
The young, the bright, the fair. For there is purity.
On the earth that has guilt and care, but peaceful is beneath the dark blue waves.
I find myself drowning in the ocean without feeling the need to swim.
For I find solace in it.
The waves of the ocean touches my feet making me think of the solitude, the solitude that I deeply crave.
Little white waves come running at me,
Splashing over my toes
As I stand still, away it comes and goes.
Swept away by life’s tide,
I struggle to return.
The ocean in me tells a story.
Listen close and you’ll hear it.

•☽ Ró ☾• #dark #blue #moody #ocean #aesthetic #whale #seashore #calmness

2 AM

What is the first thing that comes to our mind when we are awake at  2 am in the morning? What is so special about this hour? The rush of endless thoughts, the tranquility, the sound of the breeze passing by the window giving us a sense of relief. The time of the night when you think of the unthinkable. We usually think of the things we would have done differently. What we don’t do is think of the wonderful opportunities that are yet to come our way. We think of love, friendship, hatred, past, future etc etc. The most beautiful feeling of this hour is the pleasure of solitude. Its the divine silence amidst all the chaos in our lives. Some nights are highly motivating while the others are full of regrets. Everyone has a 2 am and 2 pm personality. It’s about who you want to be at 2 am rather than the person you pretend to be at 2 pm. Face your demons. Challenge yourself to do better every single day. Think of all the good things you want in life. Silence is a powerful notion. It can awaken the inner you. The quietness, stillness, the most powerful hour of the night where you explore your mind. Explore the possibility of the life you want. A positive thought and you are ready for the world. So don’t limit yourself. Expand and explore the endless possibilities of life.


Spread Your Wings!

Our mind is an endless ocean of unpredictable thoughts. We come across various kinds of thoughts. Positive and negative thoughts to be more specific. Most of us fill our minds with negative thoughts because we are afraid of letting in the good. Why? It’s because we are afraid that it won’t last long. You know it’s not true when they say that negativity and bad things dominate the good part of our lives. The fact is that the fear of failure dominates the positivity in us. We go through bad things and start assuming that only bad things are bound to happen in our lives. But that’s not true. Every person comes in this world with equal shares of good and bad experiences. Everything we through is an experience, a lesson learnt. Be it laying under the sky and feeling the warmth of the sun or feeling burnt by it. Life is an experience with various categories under it. Physical, emotional, spatial, creative, desired, affection and much more. All I want to say is feel. Feel everything. Open yourself to various possibilities. Spread your wings. Don’t hesitate to fly high. The joy that you end up feeling is worth every ounce of energy you put into it. Don’t let fear overpower you. Tell yourself every single day that no matter what happens today, you are ready to conquer the world. That you are ready to learn and cherish everything you feel. Be it joy, be it pain. You are ready for the world to offer you whatever it has in store for you. Don’t ever give up. Rise and shine.


The Story of A CKD Survivor!

Where do I begin from? I’ll start by introducing myself. My name is Deepina and I am 19 years old. Today I will be telling you a story. My story. Story of a girl with loads of hopes and dreams but not a normal life. It took me a long time to feel the abnormality of it all. My story could help a lot of people struggling through diseases that are hard to beat. But trust me, it’s never impossible. Everything happens for a reason. There is always a reason behind everything that we go through In life. Yes, it is also true that some diseases are unbeatable. But the most important thing about such diseases is the way we try and handle it. It’s in our hands to not let it consume us. Consumption by something can be deadly. You must not give anything the right to control you. No matter what happens don’t let it consume you. Face it, fight it and rip it apart. Be so strong that even life gets tired of questioning your abilities. Be so worthy that no one dares to challenge you. I’ll tell you a little about my disease now. I have a chronic kidney disease. Kidney patients have increased rapidly all over the world. The disease I have is common in my age group which is between 13-35 years. The most painful thing about a kidney disease is the fact that you’ll bound to be restricted to a place because you’ll be under dialysis. Dialysis is a technique through which all the toxins and water stored in our body gets removed via a machine.

So to begin with, 8th April, 2019 is when I got admitted in the hospital for my transplant after what felt like forever. It was scheduled on 10th April, 2019. I am basically going to take you through each and every day of my stay here at the hospital. I want you to know my journey. My story. A battle I have been into 2017. I want to tell you that a survivor is truly not a survivor without their share of sufferings. Let me tell you, the sufferings are endless. But trust me at the end of it, it’s all going to be worth it. To give you a glimpse of my journey, I would like to begin from the place I was first diagnosed with this disease. It was my hometown. I started to show up some weird symptoms a few months back in 2016 when I had typhoid fever a few times consecutively. When I got tested for typhoid, I went to a local doctor who did tell me that I was losing protein from my body. We got worried in the beginning but then he insisted that it’s nothing to worry about. Little did I know that my negligence would lead to something so huge and massive. Anyway so back to the story. I started showing up teeny tiny symptoms like swelling in my face, a little irregular bleeding etc etc. People at school would look at me and ask if I was actually okay but then I thought it was because I was into severe depression and always falling sick. I used to be so sick that everyone assumed that I was making it up. I was in my senior secondary and bullied most of the days at school. My health was affecting my studies. I would always be into stress, feel restless and mentally sick. All of it was very hard for me. So when I was preparing for my boards that were as usual scheduled in March, one day in January, 2017 I complained my mother of severe itchiness and dryness in my eyes. So we went to a opthalmologist. While checking my eye sight the doctor out of nowhere told me that you do know that your eyesight is getting affected due to your thyroid problem right!? I said to the doctor very confidently that I don’t have thyroid and then he tells me, are you sure? Because that pretty well seems like a goitre to me in your neck. Although I would be very honest, a lot of people have have pointed out my neck quite a few times. My brother is a doctor, so when I told him that the opthalmologist insisted on getting me checked, we got a few tests done. So it did show up that I had a thyroid problem. I went to my family doctor and he told me that I don’t have normal thyroid. So I got a tiny biopsy done to know what the actual problem was. Later the biopsy showed that I have a different kind of thyroid. It’s called “Hashimoto thyroiditis.” It’s usually a surgical procedure so we decided to visit a general surgeon. The doctor told us all about it and also mentioned that a person usually gets this type of thyroiditis when there is another potential disease in our body. To get to know to the root of the problem, we get a huge number of tests done. After the results come out, the doctor refers me to a nephrologist. To be followed, I was monitored for a few months to see if the problem of losing protein was improving or increasing rapidly. Unfortunately the problem was increasing. So the doctor asks me to get a renal biopsy done. This was the first time when I actually felt so much pain on my journey to this disease. It was the first procedure and an essential one to know what we were dealing with. I was kept for an entire day to do this procedure. Even though they had localised the area, I could feel the doctor remove tiny pieces and God I was in so much pain. It felt like breaking a bone but slowly. Soon my results got out and I got to know that I was suffering from an auto immune disease called “IgA nephropathy.” In the beginning I never really understood the severity of my disease. As time passed by and I had more frequent visits with my doctor, I realised what I really was into. It was that day, when I clearly remember what the doctor had written on my prescription, “Rapidly Progressive Renal Failure (RPRF).” That is when it finally hit me. Admist all this I had given up my boards and had picked up the option of home schooling. My brother knew the severity of my disease but didn’t tell us openly because he didn’t want to panic us. He wanted to give us some peace of mind until we could have it. Soon after a month or two I left my hometown and shifted to my native place for the treatment. My brother had got his pg seat there. I needed to be guided and for that I needed my brother.

Now, comes the first phase of this disease. The initial treatment was high dose steroids. Let me tell you, steroids are the worst thing out there. Steroids can mentally and physically destroy you. Steroids have a lot of side effects. I started with 60mg prednisolone. To begin with the side effects, the obvious ones are rise in appetite, massive weight gain, moon face, edema, depression, anxiety, insomnia etc. I experienced all of it, bit by bit. The worst thing was that within a week I had gained around 25-30 kgs and I hell looked like a big fat balloon. I couldn’t look at myself. I started self hating and self loathing myself. I couldn’t move because my legs and toes had rapidly filled with water. Until then I was already on food and water restrictions. Let me tell you another thing, renal diet is the worst there is. Out of 10 dishes on the table, 9 aren’t allowed. I would have such bad cravings. I would end up watching food related videos to satisfy myself and then later feel guilty about it. But at that time that is what kept me going. It was really difficult for me. My whole body had this huge blood red stretch marks. They weren’t normal ones. Eventually the steroids didn’t work and all my suffering had gone in vain. After the steroids the doctor prescribed immunosuppressants to give it one last shot. 5 days of immunosuppressants and I land up in the hospital. The day I get hospitalized, I get a massive seizure due to uremia. I lay unconscious for a day or two. The seizure makes me extremely weak and this was the first time when they insert a urinary catheter. Urinary catheters gave me a sense of what hell must really feel like. The pain that you go through due to a catheter is inevitable. You will only understand the degree of the pain is when you go through it. Like I said in the beginning, the sufferings are endless. And this was one of them. Soon after a 15 day stay at the hospital I get back home. My steroids get reduced to bare minimum to none by the end of six months and I start my dialysis during my stay at the hospital.

September 12, 2017 I have my first dialysis. It started with 2 hours. I had to get a central line done on the right side of my neck. Dialysis through a central line can be really painful. How would you feel if one stuck a huge pipe through your neck for 2 whole months. The discomfort was real. My first dialysis was horrifying. I suffered through various symptoms like tingling in the body, rigor, extreme body ache etc. The worst thing was that I wasn’t fully unconscious when they made my central line. They had given me no local anaesthesia. I begged the doctor for mercy as he cut through my throat and inserted huge needles through my neck. Eventually I got discharged and joined a hospital nearby for hemodialysis thrice a weak. 2017 to mid 2018 I suffered greatly. I would have severe headache and vomit post dialysis almost every single day. Each dialysis would be of 4 hours. Staying still for entire 4 hours is not an easy job. There were endless complications. It’s not going to be easy. There will come days when you’ll feel helpless and would want to give up. That is when you’re going to have to stay strong. Now the only betterment option for my disease was a kidney transplant. The procedure of it all took almost two years, which meant more and more dialysis. I won’t lie, even if you end up feeling weak and exhausted, you’ll definitely feel a lot better because the bloating will be gone. Water and diet restrictions, no urine output etc can make you feel awful. I could only have 500ml of water including all the liquid in my food. Too much liquid in the body could cause breathing problems, vomiting etc. It’s important that we maintain low potassium and sodium levels.

In 2018, May I was admitted again because my lungs had filled up with water and my heart’s pumping capacity had reduced to 30%. I was unable to breathe. I still remember that night vividly. I couldn’t go to the hospital that night because I had a very important blood test that was essential for my transplant the next morning. I suffered the entire night. I couldn’t sleep. I kept vomiting, my lower abdomen and stomach hurt like hell. The minute I tried to lay down I got up the next second because I couldn’t catch my breath. You know that feeling, to not being able to feel air in your lungs. I hope no one has to go through it. It’s worse than an anxiety attack. We CKD patients don’t respond much to nebulization. Our only constant source of relief and comfort was dialysis. I have had around 300 dialysis till date. My last dialysis was scheduled the day before my transplant on 9th April, 2019 for five whole hours. It really hurts when they stick two giant needles in your arm every other day. But in the end, no matter much pain you feel, you get used to it after a while. That’s the thing about pain, the more you go through it, the less you start feeling it. The more it becomes bearable and beatable. After a point you start feeling numb to everything that’s happening around you. The most important thing I learnt in my journey as a CKD patient was learn how to be patient enough to accept what life has to offer. The faster you accept it, the easier it becomes. The important starring point is to recognise and acknowledge the double nature of mind. Those who are magnetised are full of confidence and faith. You know you are born to succeed and to win. You just have to believe in it. It’s not going to be easy but at the end of the day you are going to feel a lot better. Train your mind. The conscious mind is like the navigator or captain at the bridge of the ship. You direct your ship. It’s upto you to fight the storm and make it to the shore. Only you can handle and control your life. No external being can give you instructions on how to fight your own battles. If you repeatedly tell yourself that you can do it, you will do it. And it’s a fact that there will be scenarios in which you’ll be repeatedly reminded that you cant handle it, that you can’t do it but that is when you constantly have to push yourself to the edge. Expand your boundaries. You’ll feel so good when you get the taste of what being free feels like. Learn to find all the things you need and that my friend is the treasure house of eternity within you.

Now I will be telling you about my transplant. Just like I mentioned earlier I was admitted on the 8th. The first day of my stay at the hospital was normal. The second day I had my last dialysis followed by which my doctor made a channel on my right arm to start with the pre operative medications. The second day was quite satisfactory because I knew I was done with dialysis. I was so happy about it. It was painful as usual but I was ready to say bye to dialysis forever. The doctor on the day of the transplant asked me if I was scared or nervous. And to be very honest even though I couldn’t sleep the entire night I didn’t feel nervous at all. I felt ready. Ready to start a new life. A life, a chance that I was lucky enough to get for second time. I was prepared for what was about to happen after the surgery. I knew it wouldn’t be easy but I kept picturing all the things that would happen after I get past it. That kept me going. My transplant was done within 7-8 hours. Even though I was extremely drowsy, the first thing I heard was my brother calling out my name. The sound of my brother calling out my name felt soothing and I drifted back to sleep again. Whenever I kept gaining consciousness, I would feel this intolerable pain run through my body. The catheters attached to my body hurt and burnt like hell. They kept supplying fluid to my body in order to monitor the kidney. Fortunately I was responding well. Whenever I regained consciousness I would beg them for water. My mouth was so dry. The nurses were kind enough to give me a cap of water whenever I asked them for it. So this was all about my first night of my transplant. The next day, real early in the morning they made me sit up. The pain was excruciating. I screamed and begged for them to stop but they kept assuring me that it’s going to get better. I have to hold on to it. The only thing that I kept constantly thinking was everything is going to be fine. Just a few more days of pain and I get to relive a completely whole new life. Life with possible hopes and dreams. Admist all this I lost a lot of blood. My hemoglobin got down to 6 so I was supplied two units of blood. My legs got a little swollen too due to so much liquid being supplied to my body. On the third day I started sitting and slowly walking in my room. I was starting to feel better but then there was a lot of pain too. I kept reminding myself that on day 5 it’s going to removed. Nights were really hard for me due to the catheters. They would hurt the crap out of me and I would cry and beg them to remove it. I tried as much as possible to avoid painkillers. I didn’t want to be dependent on them. I wanted to fight no matter how much pain I felt. I kept picturing all the good things that would happen after all this was over. I feel so lucky when I think of all the people who took care of me. My doctor’s, my nurses, the entire team and my family. I can’t thank them enough. There was not a single moment when I felt left out. They were constantly by my side through it all. Finally on day 7 I got discharged and got back home. Before getting discharged I made sure that I wrote tiny bits of appreciation for everyone involved in my speedy recovery. I feel privileged to be surrounded with such magical and kind people who believed in me and stuck with me through thick and thin.

Today I feel better than anything I have every felt. I feel alive and whole again. I feel joy, happiness, strength, wisdom and overpowered. I feel proud of myself. I thank my inner self to have kept it going. I want everyone out there to know who are suffering that you are not alone. That there are others like you out there with whom you can talk to and express yourself. You are not alone and you’re never going to be. You hold the power of telling your story anyway that you want. It’s yours to narrate. It’s your struggle, pain and strength to fight it all that makes you a warrior. Always remember, you have nothing to lose. You can always try harder and harder. Your boundaries define the person you are.

Every thought is a cause and every cause is an effect. The law of life is the law of belief. A belief is a thought in your mind. Do not think of things that will harm you or hurt you. If they harm and hurt you, train yourself to fight against it. Heal, inspire, strengthen and prosper. Change your thoughts, train your mind and you’ll be the one changing your destiny. Peace of mind and a healthy body are inevitable once you begin to think and feel the right way. Never forget that you and your experiences in life matter. Whenever life puts you down, think of all the things that you have gone through. Think of how far you’ve made it and appreciate yourself. Don’t underestimate yourself. The most amazing thing about being a human is that you know you have no limitations and boundaries.

Everything around me feels so much brighter. I get to look at life in a completely new way. I know how to value my life and I am going to make every single day of my life count. Thank you to everyone who were by my side during my journey as a CKD patient. Thank you for hearing me out. It’s never too late to value the things that matter in life. We will rise and shine even in the darkest of nights. Do you know why? Because the fire inside us burns brighter than the fire around us.

Thank you.


Childhood (#BhaiDoojSpecial)

My childhood was very different and special from others. I grew up with my brother who is 8 years older than me. My father had to be away due to work. So I spent the 18 years of my life with my brother and mother. Why am I telling you all this? Something really special happened when I was a baby. I was only a few months old. My mother had gone out to get some groceries leaving me alone with my brother. He was a kid then. Mom was really tensed on her way back home because she was certain that if I woke up from my sleep I would cause trouble to my brother. She for sure knew that my brother wouldn’t be able to handle me. But, when she came back home, she was surprised. She couldn’t believe her eyes. My brother was rocking me in his lap and singing me a lullaby. When asked, my brother said that he had already fed me warm milk and cleaned my clothes. It was the sweetest thing a brother could do for his sister. Since I was a baby my brother has been taking care of me. The tiny little things that he has done for me, the way he has been protecting me, I consider myself extremely fortunate to have had a brother like him. My brother always let me cut his birthday cake along with him, he would always shared all his gifts and toys with me, he would always feed me with his own hands, cry with and for me, cover for my mistakes and Never forget his responsibilities towards me. My childhood was special coz of the magical relationship I had with my brother. All these memories make my childhood extremely special and memorable for me. One of the luckiest thing is to have a happy childhood. And I am proud to say that I have had a beautiful childhood and more than that an amazing brother 🙂


What is happiness!? Happiness can mean anything to the each of us. Happiness for me would be making a cup of tea for my parents and getting an applause in return. It would mean going on a late night drive with my brother in winters. It would mean finishing an art piece within the time limit I have set for myself. Happiness is letting go of what you think your life is supposed to be like and celebrating it for everything that it is. The moment you realise you are responsible for every aspect of your life is when you are completely free. The self is always changing. What matters is how we create the self we wish to be every moment. No matter what situation you are in, it’s you who gets to decide whether you want to see the bright side of it or be upset about it. Everything we do is in our hands. Every situation, every moment, memory is all our doings. Little things in life can lighten and brighten up our life. Doing what you like is freedom. Liking what you do is happiness. Your only goal in life right now is to be happy and cherish every day of your life. Happiness within a soul is that strength that helps you build your life with moments filled only with joy rather than grief. Happiness could mean feeding a dog or getting wet in the rain, it could mean going on trek with a bunch of unknown people and still enjoying it immensely. It could mean going on a solo trip with your own money. It could mean so many things to so many of us. So rather than wasting your life thinking about what all you couldn’t do, work forward towards all the amazing things that you could do and feel happy about. Everything will happen for you all of a sudden and you’ll be thankful that you didn’t give up. Blessings are coming. Believe that.

My Beautiful Aunt! 

It felt like home. Wait. You must be wondering what felt like home. My aunt’s lap and her pampering me felt like home. There I was laying in her arms and sobbing. I am so incredibly attached to her that I think the only difference between my own mother and my aunt is that my mom is my biological mother and she, well she raised me like her own since I was a little baby. She is such a beautiful person inside out that I look up to her with awe. She is the most incredible aunt one could ever imagine to possibly have. Its my privelige to have her in my life. Whenever I demanded of something, be it anything. Be it food, clothes, toys etc etc. She always made sure that I got them. Whenever I was sick, she was by my side helping me get better. You have always encouraged me to do better in life.  Today as I suffer, she cries for me and prays for me. What have I ever done to deserve someone like you Aunty? You always look after me. I miss you so much. You have given me beautiful memories. Hyderabad was beautiful because of you, Tina Di and Uncle. Thank you so much for everything. Never have I felt so happy as much as I felt today laying in your arms. I love you Shikha Aunty. You are the best aunt ever. Thank you so much for coming today. 🙂 You know what I miss the most about you? It’s the sound of your bangles whenever you came home. 🙂 

Did I Face The Worst Yet?

When it comes to telling a tale, everyone has got a story to tell. Today I am going to tell you a story. Story of a 17 year old girl fighting for everything she has ever wanted to experience in her life. Fighting for that one day when she will breathe normally, again. Live a happy and healthy life. She believes that if she ever wins this fight, she would never look back at the memories that caused her pain all her life. She is ready to rise. And she will rise again and make fresh and happy memories. Memories that will last forever.

I am that girl. And this is my story.

My life isn’t quite extraordinary. I am a girl with an ordinary life with extraordinary problems. Problems attract me the way magnets attract each other. It’s so frustrating that I end up wondering what’s so interesting about me. Am I really so bad that I deserve so much pain and sorrow since I was a kid? Horrible things have happened to me. I was hurt through many ways but with time I told myself to get over it. Where was the benefit in holding on to the past and crying about it?
Every worst thing that ever happened to me took a piece of me. Like a chunk. I was losing myself in facing the worst. The thing is, until now I used to think that maybe I have already faced the worst in life. What worse could possibly happen? I went through a lot mentally and physically. What else could happen to me. Boom. Now here comes the interesting stuff. Just when I thought life was maybe gonna get settled I was surprised with the best thing that could possibly happen to me. I discovered that I have an auto immune disease called IgA Nephropathy. Well to make it more simpler it means that both my kidneys are of no use. They don’t work anymore. Until I realized i had this disease it was too late. Initially my treatment started with steroids. I started with 60mg. As you are aware steroids have many side effects. Life changing, heart breaking, self loathing changes. Physically my appearance DRASTICALLY changed. I started thinking too low of myself. I became extremely puffy, lost a lot of hair, faced insomnia, edema(swelling of hands and legs), acne problems etc etc. You know what the worst part is? After 4 months of having steroids there wasn’t any positive feedback. Rather my disease became worse. Then comes the second part. The doctor suggests that before heading with dialysis let’s give a shot to immuno suppresants.
Immuno suppressants are the shittiest medications you could possibly ask for after steroids. But the funny part is that these medications also didn’t work on me. I had them only for 5 days and ended up in the hospital on the 6th day because of severe edema. I literally couldn’t walk. It felt like I had elephantiasis. That’s how bad the condition of my legs was. The pain was intolerable. But I still tried not lose my shit. Honestly I am extremely terrified of needles. They scare the hell out of me. I was admitted in the hospital for two weeks. I had an episode of seizure on my second day there. It was horrible. Then came the next horrible thing and it was when the doctor was placing a catheter in my neck so that I could start with dialysis. Oh. My. God. I cannot express in words the excruciating pain I went through. He had not given me any local anesthetic. He literally just slit my throat. And I was crying and begging for some mercy. That day, that feeling, still haunts me. Next up was my first dialysis. Every dialysis session is for 4 hours. My first time was horrible I kept shouting and screaming in the ITU hall and the nurse kept saying, “Don’t lose it, just a few more minutes. You can do it.” I don’t know how, but I fought it. It was bad but I got through. In total I had 4 sessions back when I was admitted in the hospital. In The next three sessions I face terrible shivering which I tried hard to tolerate and I did. After the body lost sufficient amount of water I was discharged but the doctor said that until the transplant happens I must have dialysis twice a week. So I start with dialysis at this hospital close to my place as I am not capable of travelling too much. Firstly because of the catheter in my neck and secondly because after every dialysis I become extremely weak. So my first dialysis at this hospital goes terribly wrong. The minute It starts I became breathless. This breathlessness lasts for almost an hour. Then just when I start to feel air in my lungs, I start vomiting. After the vomiting my BP drops and I lose consciousness. After god knows how much time I regain consciousness and then start having these horrible muscle cramps. So basically out of the 4 hours, I was tortured for at least 2.5 hours. Since that day I’ve had another 3 sessions and faced most of the problems I mentioned above. It was just last time that they had to re-stitch the portion in my neck where the catheter is placed as the previous stitches tore. I know everything happens for a reason but sometimes I wish I knew what the reason was. Sometimes pain has no boundaries and limits.
Coming to the point, I am still on dialysis and I will be on dialysis until I get a donor. In the past 4 months the amount of pain I’ve suffered isn’t something I can express in words. There was a time when people said I always made false health excuses and skipped school on purpose. They said some horrible things. Put me through depression. Looks like all of their wishes have come true. But hold on. Why am I telling you my story? Am I doing this for attention? Sympathy? No. I want neither of them all I am trying to say is after all the horrible things that have happened to me, and are still happening, even though I lose hope and faith, even though I have my loved ones to keep me going, I know that I have to fight this battle alone. And trust me, I will. This is not the end. I might even face worse things in life in the future. A lot of things will change in the future but what will not change in the trust I put in myself. The one thing you should constantly remind yourself is that you are all you have. You are your strength, energy, and support system. When something goes wrong, you feel the pain, no body else does. No body else feels your pain. So feel proud about the fact that you feel pain and take it all in like a fighter. You are a fighter. Tell yourself that you don’t need anyone to fight your battles. I am fighting my own battle. Why can’t you? Honestly if I can fight my disease then you can fight any sort of problems in your life. Just have patience. Things will always fall in place.
The night is darkest just before the dawn. And I promise the dawn is coming.