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.