I haven't really introduced myself so here's a little more about me that you probably didn't know. This is the me behind my illness.
I'm Nasie Bayley, said "Neigh-sea", and I ironically love horses and the sea; thank you for the name Big Bro! He obviously knew before I myself did. I also am passionate about yoga, health, fitness, creating, writing, reading, my family, being happy and loving my animals.
I created my Facebook (Nasie's Story) page to share my story with you all and help motivate you to live your life no matter your restrictions. I also started it because I had so many people asking for updates and I needed a place to update everyone all at once while helping others who feel they've lost their power in life because they're going through some difficult battles. I wanted to help those who are sick, know someone who is and spread the word about invisible illnesses and that you can take charge again.
My dreams are to attend university, become a yoga teacher, publish my book, help others live happily and be able to live pain free, or near enough. I have many other goals such as travelling for a holiday, making friends, go paddle boarding, go on adventures with Red on a road trip after my surgery and many more. I plan to live my life as much as I possibley can and help others do the same, even with my illness and finances holding me back.
I have an extremely rare condition that has caused many other complications. I was born with it but was misdiagnosed a few times. At the age of 13 I was finally diagnosed but no one knew what to do and I was left as I was "okay" up until I hit 15 and puberty was in full swing. Because of the hormones during this stage in life my malformation begun to grow at top speed. I was admitted to hospital many times in 2012 and after months of tests, haemorrhaging and ICU visits they had a rough plan. On November 21st 2012 I had my major surgery where they took out most of the malformation and I now had an ileostomy. Over the next few months I was back and forth having surgeries for my other conditions and then on the 13th of March 2013 I had my ileostomy reversal surgery and it was successful. Over the next two years I had monthly operations and many hiccups along the way. These operations slowly decreased and now are yearly. We missed the signs of my health depleting once again and now the remainder of my malformation is growing quicker than before. I am now facing another major surgery during which I will be getting another ileostomy but this time it'll be permanent. My surgery was planned for the 13th of April 2016 but has been postponed due to more issues and I am now awaiting a new date and plan for the surgery. There will be some big consequences for having this surgery but there isn't much choice and if it works then I will learn to live again. I am trying to come to terms with having a permanent bag and most of the time I am okay but sometimes I feel disgusted and think others will find me so. Ostomies aren't disgusting, they save lives. So I keep reminding myself that by being brave and sharing my journey I am not only helping myself but others too, whether they have an ostomy or not. We need to be open minded and grateful for the things we can survive and be accepting of what others live with in order to survive. Thank you all for supporting me on this very long and treacherous path, you help me beyond words and more than you will ever know. Each and everyone of you are sparks that ignite my fire to fight.
I have a dog named Red. She's a red Heeler and was given to me six months after my ileostomy was reversed. At this time I had started getting out and about a bit and Red motivated me to keep going; she still does. Without her I wouldn't have gotten this far this "healthily". She's my best friend and always knows when something is wrong before any of us notice. Red is there for me in the night when I'm in so much pain I can't sleep or when I'm up vomiting; it doesn't matter what it is she's there through the good and the bad and she always makes sure I remember this.
I also have a pony named Buddy who I've had since before my major surgeries. He's what motivated me to get out of hospital after my major surgery. The day after I was released I went and saw Buddy for the first time in over 6 months and he came running up. It felt weird and unreal to see and feel him again. It was like I'd wake up and be stuck in the jail we call a hospital. During our reunion I couldn't walk or stay awake for long periods of time, Buddy was also grazed away from home because a kind friend was looking after him for us, but I was adamant I was riding and I did. My big brother lifted me onto Buddy and made sure I didn't fall or hurt my new ileostomy. I felt alive again. My muscles shook within seconds but I refused to get off. I needed to get strong again so I relished in a few moments of freedom by sitting there for a couple of minutes and then managed a tiny few steps riding. From that day on I slowly rode a bit more each day and gained my strength back quicker than the doctors expected, quicker than walking ever could. My fight was back and I felt life again.
I live with my Mum and younger brother (my older brother recently went flating) along with our furry friends. We struggle financially because my mum lost her job while I was in hospital and she now has to be with me most of the time in case I haemorrhage again. It's tough and we do what we can to survive which is why we are asking for your help. Please donate and help me and my family live again. www.givealittle.co.nz/cause/helpnasielivegain
