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nikkialltimelow

United States

How Being Sick Changed My Life

April 4, 2016

PROMPT: Open Prompt

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In the year of 2002, I had just turned five. I enjoyed all the things normal kids my age had such as faking naps and playing outside. A month after my birthday, I started to get sick and I couldn't enjoy doing my favorite things because of the pain I was in. I couldn't play outside with my best friends. All I could do was nap and lounge around the house. I was supposed to start kindergarten that year but things weren't looking up. I was still sick and the doctors weren't able to figure out what was wrong. I, fortunately, was able to begin school but that didn't last long. Two days after my first day I ended up being rushed to the emergency room where they discovered that my large intestine was slowly dying so I had emergency surgery to have it removed. I lived with an ileostomy for a year after my surgery but then it was reversed into a J-pouch. Things really never got better at that point. I continued to be in and out of the hospital. My doctors weren't able to control it with medications. So, I spent many days in and out of the hospital due to bowel obstructions and other complications with my J-pouch. I wasn't able to have a normal childhood due to this. My only "friends" were my nurses because I spent more time with them than I did with children my own age. At the time, I hadn't really minded it, but as I got older I started longing for friends my age that I could actually relate to. Around 2007, things started to look up for me. I hadn't been admitted to the hospital in over a year which was a plus but my symptoms were never really relieved. We thought Remicade was going to be my miracle, but after 2 years of being on it I developed an allergy to the antibodies in it. My doctors were stumped from there. Everything they had prescribed never did much for long. All the medications I was on were just temporary fixes. I had multiple fistulas that wouldn't heal on their own so I had lived setons for most of my life. The drainage from the fistulas made my life especially hard because now that I could finally participate in school, no one wanted to be around the girl that had all of these medical problems and "accidents'. Nothing just seemed to work for me and there was nothing I could do to prevent any of this. I was just so desperate for someone to relate with me. Finally in 2011, I discovered Camp Oasis. This was what saved me. I could finally have people that would understand my struggle and to this day, I still consider some of the people I met here my best friends. Camp is what got me through the year. I never wanted it to end. I had went again in 2012 even though I probably shouldn't have due to how sick I was getting. I was miserable and the fact that I was missing out on all the fun activities made it even worse. When I got back from camp, things had started to get bad again. I started to develop perianal abscesses. This caused me to miss a good chunk of my freshman year of high school. I was admitted to the hospital on September 22, 2012 which caused me to miss my homecoming. I was absolutely devastated. I remember I just kept crying and thinking "why me?" but then I quickly pulled myself together because i'm not one to throw a pity party. I just accepted my fate and moved on for the most part. I was put on home instruction until about the middle of November. Upon my return to school, my new high school friends I had made were so excited and we started planning all of these fun things we were going to do during winter break but it never happened. I had developed another abscess shortly before winter break which put me in the hospital for most of it. I started to get discouraged at this point because the doctors couldn't find a way to get it under control and I kept missing out on so much because of this. I went for a second opinion at the Cleveland Clinic to see if they agreed with my gastro's opinion on getting a permanent ileostomy. This had given me so much hope because everyone talks about Cleveland Clinic like they're miracle workers and it was just a very prestigious hospital so I expected the best but I got the worst. They agreed with what my gastro had said and that was the first time I had ever cried in front of a doctor. I can't remember her name but the last words she had said to me were "You don't hate me, do you?" and I, of course, replied no because I didn't. How could I hate someone who was just trying to help me? I wish I could've gotten the answer I had wanted but she was just giving me her professional opinion which I respect. 2013 was just a bad year for me due to hospital admissions and surgeries. I had started to look into clinical trials and I found a very promising one at UPMC. I wrote to the doctors over the summer but after months of waiting, I didn't think I was going to get a reply until I finally did. They said I seemed like the perfect candidate and they were very excited to meet me. So, a couple of months after that letter we packed up and made our way to Pittsburgh for some testing. After two days of blood work and MRIs, we discovered I was too sick to participate in the trial but they had given me more options which I was thankful for. After my adventure to UPMC, I sat down with my surgeon and we talked about the possibility of a temporary ileostomy for the second time in my life. He hesitantly agreed but I was definitely elated to have that option if I decided that's what would be best for me. A month later, I got drastically worse. I spent Christmas and New Year's Eve in bed and that's all I could do. I was in so much pain and moving made me unbelievably nauseous. At that point I had decided the temporary ileostomy would be best for me.
In January of 2014, I had sat down with my surgeon and planned my surgery for January 14th. I was ridiculously nervous for this but I had great things planned for this year and I wanted to be able to participate in the last couple of years left in high school. After I had finally healed, it was like magic. I felt brand new. I wasn't in any pain for the first time in almost 12 years. It was an absolute miracle. I could actually live my life. I was finally happy. I didn't have to stress as much about every little thing. I wanted to get out of bed and be around people. I believe I truly came out of my shell because of this. I started to make friends and go on adventures with them. I could actively participate in softball without needing to sit out every other inning like I had to in the past. Even though I was healthy enough for camp, I was still getting used to having an ostomy. I just couldn't believe it was possible to be so happy but here I was, the happiest I had ever been. It was truly phenomenal.
My family had played a huge part in my comeback, but I'd have to say that the most influential person was the greatest nurse to ever exist, Nurse Beth. She really was the greatest nurse anyone could have asked for. Since I had basically grown up in the hospital, she and I became very close over the years. She made me feel safe like I was at home. She did everything in her power to make me smile. She was the first nurse I ever grew to trust. Beth did everything for me and I couldn't have been more thankful for her. There had been a time when I was extremely stubborn when it came to taking my medicine. I wouldn't take it without her there. Her special trick to getting me to take it was doing cartwheels and handstands throughout the hallways. After all of these years, we still stay in contact on a regular basis. I could've easily called her my best friend growing up. Nurse Beth is the reason I want to change lives because she changed mine when I most needed it. I'm immensely proud to call her my hero. She never had to do any of that for me. She could've just been like all of the other nurses and did only what was expected of her, but she made sure I was happy and my stay in that hospital wasn't horrible. That is what being a nurse really means in my opinion.
As I had said earlier, after having my ileostomy surgery I could finally enjoy softball for the first time in my life. I have been playing softball for almost 14 years now which makes it a pretty huge part of my life, but since I had been sick the entirety of my softball career I never really excelled in it. I had to always sit out on the bench and watch all of my teammates enjoy this game that I loved so much but couldn't participate in. I still loved being there but once I was able to actively participate it become so much better. I felt my best when I was out on the field. This surgery had also helped me find out who I was and what I wanted to be. I slowly discovered I was highly interested in photography, hiking, and traveling. Although traveling is still a scary part in my life because of my Crohn's Disease, I really want to experience what life has to offer. I want to go out and explore all the different cultures and learn everything I possibly can. My biggest goal I hope to accomplish in the upcoming years is to change someone's life. I just want to make my mark on this world even if it's just one person. I want to do something big whether it's nursing or helping people get what they need through a non-profit organization. I want to save the world. I want to do great things with my life because I know I can now. I don't really care what I do as long as i'm able to help people. I want to prove that things aren't as horrible as they seem. That's all I want in life.
The biggest and most important piece of advice I could give is don't let your disease control your life. Even though your disease is a huge part of your life, it should never stop you from living your life and doing what you want. I spent a lot of my teen years letting it control me so much that I never did anything besides watching Netflix. I let it stop me from being happy. As scary as this is, you're going to have this disease for the rest of your life and some days are going to be harder than others but that's okay. Every day doesn't need to be good as long as you remember that there are still going to be good days to come. I know it’s not always easy to get out of bed when things seem so horrible but do what makes you happy because you're going to be in pain whether you're exploring Europe or laying in bed so I recommend making the most of life. As cliche as this is, life is short so enjoy it while you can. Try to find the good in everyday even if it’s something as little as your pet. As Fleetwood Mac says in one of their songs "If you wake up and don't want to smile, if it takes just a little while, open your eyes and look at the day, you'll see things in a different way." Don't worry about others. Just let yourself be happy because that’s the best thing you can do for yourself sometimes.

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