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

Rheumatoid the truth

I've had rheumatoid since I was 23 years old and I'm now approaching my 28th birthday. When first got rheumatoid I knew things would change, the doctors told me it would but I never expected it to change to the extend that it did. I don't want to sugar coat rheumatoid for my readers so this is probably the hardest post I've wrote. I was 23 years old loving life then my mum passed away in the August next thing I knew I was getting joint pain and I was really confused by it I eventually got diagnosed with rheumatoid and that is when my life changed. Pain - This is the one thing that no one can fully understand unless they to suffer with this condition. You are in pain from the moment you wake up to the moment you fall asleep and often while you are asleep you feel the pain of your joints. Every minute every second of the day you can feel pain in your joints. Which means you have to take painkillers to allow yourself to live with less pain. Insomnia - This happens because your in such pain you can not sleep your physically tired but you just can not fall asleep. Depression - This hits most people with chronic illness at some point. We are in pain we can not sleep then our brain starts to over think things. Loneliness - We spend a lot of time on our own because of pain so we end up becoming lonely. Fatigue - If we aren't suffering with insomnia we often suffer with fatigue and then we are sleeping all day and half the night 12-14 hours a day if not more we just crash because our bodies are flaring so they are fighting us which makes us tired. Isolation - People tend not to make plans with you because you have to cancel some times because of pain or fatigue so people start not inviting you places so then you become isolated and lonely. Other conditions - The thing about rheumatoid is once you have it you know you could get other things such as fibromyalgia because of the way our body works also if we get a bug we often have them longer than most so getting sick is normal. Shame - This may surprise you but when your a grown adult and you have trouble getting dressed some days and have to ask others to do it for you it hurts a lot. You try and make jokes about the things that upset you but it hurts more than you'll ever know even if we laugh about it. Medication - This is scary because its not just the painkillers it's the many other medication you have to take such as methotrexate which is a type of chemotherapy or the biologicals or other Medication. Yes we take them even though they make us sick tired headache bad stomachs why because its a chance to feel better but then the disappointment kicks in when it doesn't work. If it does work it's in the back of your mind will it stop working as it does happen then what? Doctors and specialists - You often see them more than your friends and family! They become a part of your life and not just them but their nurses. The rest of the team they have from occupational therapist, physiotherapist, dietician, surgeons and other such people. Pharmacist - This person knows you by your name and knows your medical condition because you see them so much they are like your friend! They know what medication you take and ensure you don't have antibiotics you can not have with your rheumatoid medication. Family - Your family try and help you when they can but they don't really understand what your going through. They try and support you but it's hard for them because they don't really understand how ill you are. Family often stick by you and you become a stronger unit. Friends - You often loose friends when you have rheumatoid for many reasons they can not cope or they don't like being told you crnt do some thing and get fed up of it. On the other hand though you find out who your true friends and they stay with you through the good an bad times of rheumatoid. So you see rheumatoid isn't just about the pain of the condition there are many other aspects both mentally and physically it's not easy living with rheumatoid for any suffer. My own rheumatoid nurse said to me recently "people with rheumatoid are some of the strongest people I know" we have to be because of what we have to go through every single day. I dedicate this post to my fellow rheumatoid suffers and people who live I'm chronic pain every day.