For those that know me you can skip past this bit but for the others who don't, hello! I'm Rosie (Ro), I'm twenty and from bristol. I am currently not in education anymore or working due to severe illness but previously studied health and social care and finished with total distinctions throughout and over all. I hope one day to go back into education and meet my dreams and aspirations! I will tell you about those in another post. For now this is some information on me and my health.
I unfortunately have a huge range of serious life limiting medical conditions, so from this event we are hoping to raise some money with the raffle at st silas club at the Robbie Williams tribute act night on the 4th of October so I can do something special in-between all of my up-coming hospital appointments.
Some of my illnesses include intracranial hypertension which means there is too much pressure in my brain so I have had a VP shunt surgically implanted into the brain to relieve the pressure and to drain any excess fluid from my little old brain brain(yep!!! I do have one, which will be a surprise to many ;)). I have total autonomic system failure which means all of my major bodily systems have failed, including my stomach, bowel, bladder, my heart and all the other major body functions/ systems that you cannot control yourself like blood pressure, heart rate, body temperature, sweating, breathing and digesting. I have dilated cardiomyopathy and dilated left ventricle in my heart which cause her very unpleasant symptoms every day. Basically we could say that I'm heart broken!! I have extremely hyper-mobile joints which come out of place daily, including my wrists, fingers, shoulders, hips, knees, ribs and ankles. This causes severe pain along with all the other conditions which cause pain and horrible symptoms too. I have Gastroparesis and am tube fed into my bowel by a surgical jejenoustomy tube, I also have a venting peg which drains constantly to get rid of stomach waste, all my medications, water and food go down my feeding tube which is my LIFE LINE. I can eat food but I don't get any nutritional benefit from it because my silly stomach rejects it straight away so I get all my nutrition from my feeding tube.
I think that just about sums up what is going on with my health. I try very hard to not let being poorly take over my life and try my best to be 'normal'. It's not easy and it never will be but life is worth living. You never know when it will end. Live ex day like it's your last, love like no other and laugh,always..
I never thought anyone would want to do something like this for me and I am completely overwhelmed by the support myself, my mum, Trudy and Alison have had.
This was Trudys idea to do the raffle at the Robbie Williams tribute act Alison had organised after getting back in touch with my mum Gail after a few years.. Mum and Trudy seem like they were never apart and Trudy & Alison have become even bigger parts of our lives.
Without those two this wouldn't be happening and I wouldn't be getting my day out.
There has been a great response for the raffle and there is some AMAZING prizes up for grabs and the tickets are as little as a £1 for a strip of 5!
Even if people are not there on the night they can still get involved and have a chance at winning something lovely from the raffle!
I once again want to say a huge thank you to Trudy, Alison and mum! You are three amazing ladies and I love you all.
I also want to say a huge thank you to anyone and everyone who has been involved so far whether it being buying raffle tickets, selling them, donating or collecting prizes, sharing and spreading the word! Everything! I am just SO thankful! Peoples kindness has really touched me and I feel completely blessed.
Last quick words to finish off this first post is I thank you for reading and send love to all. If anyone would like raffle tickets etc then please use the links provided or contact me directly through Facebook.
Love and kisses
Rosie 💜
Links: http://www.gofundme.com/Rosiesdayout
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