Wednesday 17 April 2013

My inspiration and reason for fundraising - please read, be inspired and help.

My #30things began as a fun, slightly crazy idea, to help with the prospect of turning 30. However now it has become so much more. In doing these challenges, I realise how lucky I am to be doing them and how there are people all over the country and the world, that these challenges would be an impossible dream. One of those people is my cousin, Annette who has Rheumatoid Arthritis.  She has become the inspiration and reason that I complete every single challenge. I complete them for her as she has spent most of her life in pain, in and out of hospital and has had several operations including 3 hip replacements. She turns 32 this year and has suffered with this condition since she was 14. She has not been able to lead a normal, healthy life - free from pain. Opportunities and experiences that many of us take for granted she is unable to do.

Earlier this year, Annette was refused an operation she desperately needed to reduce her breast size. The medication she had been taking to help her arthritis caused her breasts to grow to an excessive size that they are now so heavy they are causing damage to her shoulders and back. She has recently had an operation to repair a torn ligament in her shoulder resulting from heavy breasts. Clearly she needs the reduction on medical terms, however her consultants believe it is for cosmetic reasons and refused the operation. We are sharing her story as we fight and appeal for a reversal of their decision, so she can have the operation and get her life back.

Please read her story and be inspired as well. Share the story and leave comments, the more people pledging their support may help her campaign. Perhaps you can help her or know someone that can? Thank you for taking the time to read this.


To,
Please take just five minute's out of your time, to read this and don't push it aside,as this is my life, which is awful right now and I really need your help! Back when I was a child, I had the whole world in front of me and the world within my hand's and if there was something I wanted more then anything, I wanted to be a mum. Little did I no, my whole world was just about to shatter all those dream's and maybe forever? At the age of 15, I was diagnosed with Chronic Systemic Juvenile Rheumatoid Arthritis (which looking back now, my family and I, didn't even no, Juveniles could get Arthritis, the whole thing just seemed so surreal.)
I'm telling you my story because I want you and need you to understand, that I'm not putting myself through all this, to do a breast reduction for cosmetic reason's but because I have and need too. Just like all the other operation's, tests, medication's (including ones with nasty side effect's,) plus medication's from the U.S.A, which my body rejected more then any other medication I've had and some time's left me fighting for my life and in hospital. Doctor's and Surgeon's, who I must say, are the best I could have been blessed with but also the so many nurses, I've met along my journey. The different hospital's and everything I've had to deal with, since before I can remember but the real people who have always been there, are my amazing, wonderful, loving 
family because believe me, I'd not be here now, if it wasn't for them because each one of them,  has played a part to why I should be here and every time I needed them, they came to my rescue.

Walberton & Binstead
C of E
Primary School.
When I first started primary school, every now and again, my mum would be called, as I wasn't feeling well but when asked what was wrong, I couldn't explain, I just didn't no the answer's. As time went on and I was getting older, my mum was coming to get me from school, at least once a week but every time my mum took me to the G.P's practice surgery, they would tell my mum that I had a chest infection, flu, virus, stomach bug's and so on.
One question I find myself asking over and over again, is if the doctor's had done a simple blood test, would we have known sooner and would we have been able to do something sooner? All I no is that it's no one's fault and we wouldn't have been able to stop it, it was just eating away at my body.
St' Philip Howard
High School
   
By the time I was in high school, my mum was picking me up, at least twice a week but then it
struck...I had just turned 15 and a few months later, I broke up for the Christmas holidays and as always
we had a wonderful, magical, loving, caring, family Christmas (none of us knowing this would be my last
healthy one!) On the 28th December 1996, my friend's and I, decided to go into Worthing and have some time
just being the teenagers. By the time I got home, I wasn't feeling very well and went to bed early.That was the day my life changed forever and the day I would have to fight, to keep myself alive! Only thing is, 16 years later, I didn't no I'd still be fighting, and at time's, my poor parent's and 3 sibling's, now and then, didn't think I'd be coming out of hospital again but one thing though, what the illness didn't no, it had picked the wrong person to mess with and deep down inside, I was a fighter and that I was going to fight back and as hard as I could. I wasn't going to let this win...
When I woke up on the 29th December 1996, I was like a baby. I couldn't walk, eat, wash myself or get to the toilet and so on. My parent's were calling doctor's out at all hour's, even during the night but they wouldn't do anything and put it down to the flu or virus's, again. I was loosing weight, getting worse every hour and looking awful. My parent's worrying more and more, as they called the doctor's on call, yet again! By this time, I'd been laying on a mattress in the front room and my mum laying on the sofa because I would wake up with high temperature's and in total agony and didn't want to be alone.
It was around the 10th of January 1997 and although my friend's had gone back to school, I didn't no, if I'd ever be joining them again. Mum called the doctor's out again and a doctor Spear came, taking one look at me, he told my parent's I was very sick and that I need to be in hospital, as soon as possible. I was admitted to Howard ward,
where my condition worsened. I was having very high temperatures, rashes all over my body and my family thinking the worst. I was in hospital about three week's, until they were able to stabilised me and then mum and I, went to St Georges Hospital in London for three days, to have test's done, to hopefully find out what was wrong. My mum and I went by ambulance car to London. It was only three day's but it felt like forever and all I wanted too do, was go home.The doctors done many tests and also an operation, to remove some bone marrow from my hip, to find out what it was for sure. They did this heart echo sound, my mum there but all I can remember was screaming for my mum not to let go of me and of course, the great mum I got given, wasn't ever going to let go of me... I can't begin to understand how my mum dealt with it on her own up there, or how my poor dad, my two sister's, a brother and my very first precious little nephew Max were back at home, just waiting for any news.
In the end, the doctors diagnosed me with Chronic Systemic Juvenile Rheumatoid Arthritis. I was discharged from St, Georges and came back home, which was lovely because I got to see my dad and family.

It wasn't long before I was back in the children's ward at St, Richard. As there were no Rheumatologists to deal with such a serious case, which involved such a young person and only a paediatrician, who did his best to make me well but he really needed the help of a Rheumatologist. My parent's would have to take me back and forth to London, once a week, to see a Rheumatologist and at time's, I was so sick, I had to lie down in the back of the estate car, on a sort of mattress, as I needed to be lying down as that was more comfortable position.
My New Rheumatologist
Dr S, Menon
Finally a Rheumatologist that could cope with my Arthritis, came to work at St, Richard's in Chichester and Bognor Regis War Memorable hospital. His name was Dr S, Menon and he also worked with my paediatrician, a Mr T, Taylor. Dr Menon being the best Dr I could have wished for...
Medication
I had to take massive of doses of steroids, which had awful side effects and made me increase in weight, which was awful at the age of 16. I also had to take a number of different medications from America, which involved me going into hospital, for monthly drips but also having to inject mysel for having my mum do it for me at home.     
I also have Pernicious Anaemia, which is a very severe blood disease, which sadly was down to myself, as I was very ill and heavily depressed and had stopped eating, so now my mum has to do
my injections for me, as she's a trained nurse and injects me every three months, with vitamin B12,
as my body has stopped producing this vitamin.
August 2012
Dr Menon, my G.P's and psychiatrists, have tried on many occasions to contact the P.C.T for a breast reduction for my awful body. It is not for cosmetic reasons. I am really sick and became so upset, then the depression kicked in and because of all the thing's I've had to deal with, I just couldn't cope and the disappointment of being rejected for my breast surgery, after being asked to loose weight and stop smoking, which I did well and was very proud of myself for doing so, as were my family. After all my hard work to get to were I was and looking forward to being given the right to have the surgery, I started to go down hill because I was being rejected over and over again (which is so, so sad because if I hadn't have got ill in the first place and hadn't of had to take such awful medication's, with outrageous, side effects, I wouldn't have been the way I am). I have so many people in my corner, fighting for me to get the operation, I need so bad. After being rejected once again, I started to go down hill. I wasn't eating, I was vomiting all the time, I was starting to loose even more weight and then started falling over, due to fatigue and weight loss. I ended up in hospital in St, Richard's Chichester hospital again, as my sodium levels were dangerously low, as were most of my other blood tests. I was also hallucinating whilst in hospital, even trying to call the police and all sort's of other nasty thing's were happening to me and I ended up under Psychiatric care but only for depression, once at home and as you might have guessed, more medication's.
My
Operation's and so on.
Since I've been ill, I have had bilateral hip replacement's, one when I was nineteen, the other when I was twenty one, of which the latter, I had to have re - replaced, due to the hip dislocating so many time's.  I use to have many fall's and have had the ambulance services, taking me to hospital on so many occasions. I have fractured my wrist and on one occasion, I had a nasty fall in the kitchen and broke my  fibular and ankle, to which I had thirteen screws and two metal plate's put into my low leg. I have been very depressed and even use too, over dose and also a self harmer, to were I cut my arm's up, to release the pain I was trying to deal with. I no it sound's funny to someone who doesn't self harm but for that five minute's when your bleeding, it take's the hurt from everything else your trying to deal with and get through that day. I ended up in Graylingwell, which is a mental health hospital, totalling about four week's. The amazing people who work there, were just that... Amazing. They didn't judge, make you feel small, it was as though they could feel are pain and would listen and talk, they made you feel safe.
This is only a part of what my life and my hospital life is like but I wanted to share it with you. I have recently recovered from shoulder surgery, due to torn ligament's because of the weight of my breast's and am now having to go back on the 29th April, as the weight of my breast's have torn it again but this time is worse, so I don't no what they'll do about it now? They also discovered I have the on set of Osteo arthritis.
I am also awaiting surgery for my right hand and wrist, due to outrageous pain and deformity and will be seeing a consultant in April for this, as I can hardly use my right hand. It has been increasingly difficult to cope with dressing, especially my heavy breasts, to put my bra on and my mum has to help. How depressing is that and how sad to have to reduce myself so low.
Just Me.
At the end of the day, I'm a 31 year old, who feels like I'm trapped in a body which some time's feel's like
I am 80 odd. Do you really think that's right? That I haven't suffered enough already? That I haven't already
had half my dream's shattered? I just want to be the fine, young, beautiful lady, that I should be but every time I look in a mirror, I feel disgusted and heart broken because that girl that's starring back at me, I have no idea to who she is any more. I lack in confidence and have a massive lack of self esteem and more and more each day,
I hide myself away, a little more. I try really hard to make it work for myself but my bodies very weak and some time's it's hard to fight 24/7.With the help of a breast reduction, I can see myself not being so ashamed and being able to do more for myself and maybe even find myself a partner because I deserve to be happy and have a lot of love to give to the right man. Plus another reason why I would do it for cosmetic reason's, the scare's are hardly pretty looking... I just want to be normal again.
Thank you so much for taking the time
to read this because I really need
all the help I can get right
now! 

Thursday 11 April 2013

#No22 - Visit to film set- complete!!

On Wednesday, 10 April I completed another one of my 30 things. For my 30th birthday my family purchased two tickets for me to go to the Harry Potter studio tour in Watford As they know how much of an Harry Potter fan I am. It did not take me long to recruit some fellow potter enthusiasts and we began our adventure in search of Harry Potter world! Thank you Lorraine, Shane, Seana and Mum for coming!

What I discovered there was beyond my wildest dreams. The whole tour encapsulated all the magic and wonder of the seven Harry Potter books and eight films. I was truly in awe. From the sets of the Weasly Burrow to the Great Hall at Hogwarts every turn was draw dropping. They told us in detail how each and every film was made revealing trade secrets and the magic behind the films. I love how all the books in the Hogwarts library were actually telephone directories covered over and How they use computer animations to create spectacular effects.

During the tour we had our own wand training and learnt the different positions fore wand combat. You get to sit inside Hagrid's motorbike and sidecar and the Weasleys car; stand on the Knight bus and enjoy a Scrumptious glass of butter beer! However my favourite moment was when I turned a corner to find myself looking up Diagon Alley itself! It literally took my breath away. It was just so real And I was desperate, oh so desperate, to go in to the shops and buy something. Just when you think it can possibly get any better you turn another corner and discover a large model of Hogwarts itself- It was beautiful. Sadly I found the whole experience quite emotional and felt rather sad to be leaving at the end.

I cannot emphasise enough how this is a must visit for any Potter fan, You will not be disappointed. As JK Rowling said 'No story lives unless someone listens' and I will never get bored of the story of Harry Potter.

Please enjoy some my favourite photos from the day.