Update from me!

Hello Well since i last blogged ive been on my holiday to fueterventura whuch was fantastic lovely sun and eat well! Up on my return from the Cannaries i've seen my consultant and had some Amazing news i have only got TWO active joints and two tendor joints which means that my rheumatoid is reacting well to my battle with RA. My consultant was really pleased and decided that we could start physio and we have decided to restart on methrotrexate which as i explained before is a type of chemotheropy drug so thats nerve wracking but some thing that i will face again. I am off to France next week to see my friend and fellow rheumatoid suffer so thats exciting. I am hoping i get some warm weather in france to top up my joints good mood lol! Here's to a hopefuly pain free summer 2013!!!!!

Life

So its been a tough winter as always. I went to see the lovely olly murs in March with my cousin which we really enjoyed because it was our annual Manchester Lowry Hotel stay! We even did spa and room service this time! Enjoyed the night, but as olly likes to produce snow you guessed it snowed so we came home early! Infact every time ive seen Olly there have been crazy weather snow and very hot weather (for the UK!!). Im having a new kitchen fitted that will better equiped for me to use with the rheumatoid so thats exciting. Also a new door mechanisum that will enable me to have it all electric so that ill just press a button and it will automatically open and shut behind me so again thats exciting. Im excited to be going on holiday to the Cannary islands for a week i booked it in 2012 so its been a long wait! Very excited to see the sun again and have a relativly pain free day, just got to get the flying out the way which i hate!! Then im off to see my friend in France which im really looking forward to. Medically wise, everything is stable or as was since i last updated. I hope that in the coming months there will be improvements. Friends i am very lucky to have amazing friends always there when things get tough. family always lucky to have you by my side :) Tracey always there to help reassure and look after me. Im looking forward to another holiday with my lovely cousin :) lets get you back up on the stage .. canarries 2012!! RHEUMATOID ARTHRITIS you may cause me pain daily you may take away my confidence my dignity at times but you will not take away my spirit and i will carry on living life to the full. Here's to many more adventures with family, tracey and friends we wont let RA beat me in your face!!!! V xx

Male friendships!

This past few months have been testing for me rheumatoid has been bad and I've struggled along had bad news regarding my health but I kept on fighting through mainly from my own spirit but also because of my male mates, my female friends u know I love you all! But the lads just I dunno humour me with sport lol. I don't know where to really start but some times you sit back and go wow look at my mates my rocks my ears my football sanity! They support many teams even villa and man city haha!! Southampton man united WBA Birmingham but they all have a cheeky convo and I have to admit many say I'm the only man united fan they can tolerate haha you know who you are (yes reading and Southampton fans!!) I could sit here and name you all and tell you how fantastic you are but to be honest Im abit lazy today I, dreaming of title number 20 and helping villa get I'm trouble .. I mean hoping a fella midlands club can get out of trouble HAHAHA who am I kidding!! You guys have kept me going through some times if it be a laugh a joke sharing sweets or just telling me it's going to be ok. Or even volunteering to run 10k (hehe) you have made the last few months bearable, you are my best friends my rocks my energy. .... Added this bit Big love to you guys cuz u know its vicky!!!! Xxx

CHD auction

As you are all aware this week is CHD awareness week and CHD UK are holding a 5 day auction for a one of canvas that was made for them. It's a great cause so I thought I'd do my bit and show my readers the auction and hope we can help raise some funds to carry on the great work they do. Please find the link below: I'm hoping that works as I've not tried to do a link on my iPad! If not ill paste the link again so you can copy paste it into your browsers. http://pinterest.com/pin/238550111484498262/

Tetralogy of fallot

I have never really opened up about my condition but this is some basic information about it I'm sharing to it being CHD awareness week so please feel free to share this. In 1888 a French doctor, etienne Louis Arthur fallot which is where the name comes from it was mentioned by other doctors previous to this. It occurs more in men than women. It is a complex condition as it had four different heart abnormalities although they may not all be present each child with TOF is different. These are, pulmonary stenosis this is the narrowing of the ventrical. Ventrical septal defect (VSD) hole in the heart. Over riding aorta and thick right ventrical which means the heart is working harder due to narrowing. A baby with TOF can have tet spells which is when a baby is blue. A TOF baby is Likely to have a BT shunt which improves the blood supply to the lungs and later has a major repair which the babies heart will be stopped and put on a heart and lung machine to keep blood flowing. The surgon will then stitch a patch of the hole and repair other abnormalities. After the repair it is important to know that the heart will never be normal it will simply be repaired. An adult TOF will continue to have cardiac appointments all there life's and this is very important. An adult TOF often develops a leaky valve which may require further surgery. They may also get pulmonary regurgitation which is when the ventrical has to work harder which causes the heart to enlarge over time which may lead to a valve replacement. I myself have this currently at a mild level. Risks to adults are heart failour and sudden cardiac death. Thank you for reading x

CHD

So today marks the start of CHD awareness week 7 February to the 14th February is week is about raising much needed awareness on CHD congenital heart disease! As many of you know I was born with a heart condition TOF my mum new I was a poorly baby. I was born in a normal community hospital in the town I lived in then I was taken to Birmingham children's hospital for more specialist care. I wasn't I'm great shape I was given a BT shunt which helps sick TOf kids live until yes have there major repair now back in the 80s they didn't automatically do this so early on like they do now in days of being born for the very sick. so my Bt shunt was to help me until I had my repair later. I spent many many weeks in hospital! I was christened in hospital because they didn't think I would live. I was lucky enough to go home and my family and town folk were raising funds for me to have my hear operation as soon as possible they raised a lot of money I was on TV and I cried! The time eventually came one November day in 1989 when I was to have my life saving heart operation now I don't know how long I was in theatre for as my mum never told me but I'm assuming it was a long time I bet it was scary for her and my family. I eventually came through the operation with a repaired heart thanks to my surgeon and consultant who I will forever be grateful to. I started school I'm 1990 with every other child and enjoyed it I had a lot of time off because I was a sick child. In 1991 I had my arteries widened via a ballon procedure. That was the last surgery I've had I've been lucky. Over the past 28 years I have had stress tests running in a treadmill to make sure my hearts ok, echocardiograms much like an ultrasound on the heart and E.C.Gs I've been poked and proded by hundreds of doctors but I don't mind because they gave me the gift the greatest gift of all life. I'm still under cardiac care I always will be my heart is not cured it just repaired in the future it's likely ill need another open heart surgery when that time comes ill face it when the time comes. Special thanks to my heart hospital I'm London for continued support. To the staff and specialists who saved me at the children's hospital Birmingham. Also those who I have met a long the way from young at heart as we grew up together and we still keep in touch today. Xx

Untitled

I was lay on the sofa earlier with rheumatoid giving me a lot of pain in my back and hips and I thought you know what I'm a survivor I live every day in constant pain but you don't hear me moaning! I also have a heart condition which I talk about when needed. I have fort from day 1 and now as I approach my 28th birthday I want to say thank you THANK YOU to all my friends past and present my family and my long suffering medical team .. Why? Because you help me get through every day your belief in me keeps me going through the tough days and your willingness to allow me to be me even in pain makes me realise how special you all are to. With out the support of my GUCH team I'd be in a lot worse place I'm thankful every day that I can call you up and talk about what's on my mind and ask for advice. My rheumatoid team it's quite a new team as I changed team but you came through for me when it got tough you told me it was OK to be scared you told me it was OK to say I'm in pain but most of all you showed me my inner strength to get through the tough days. Xxx