Saturday, 28 August 2010

Im gonna be in a magazine!!

Im going to be in 'Love it' magazine!!

I was put forward to the mgazine because they were looking for someone who had had a tough time recently and they wanted to talk about weight issues. I had a car pick me and mummy up to take us up London to Holburn studios which was lovely and we was looking at all the pics of celebrities that had been there!! I had a hair and make up stylist and a clothes stylist. The photographer was also there and so was Kerry, the lady who was writing the article. I ended up wearing 4 different outfits - 2 daytime and 2 evening. The best one was the glamour one which was a gold sequin dress and they made my hair big so i felt like Tina Turner lol.

Had lots of pictures taken which i will get to keep on a disc once the magazine comes out - i couldnt have them yet because of damn copyright. I then sat down and spoke to Kerry. She asked all about my CF, how it has affected me and then spoke about the recent problems with my PEG. I had to have my iv's while there too so that shocked them abit i think!! We got home by 4 so it was a long day but fun...then came the task of removing the make-up. They have to put on loads so the camera picks it up, so 3 face wipes, 2 eye makeup remover wipes and countless amounts of washing my face later, most of the makeup was off!

Kerry rang me on Friday to read back the article and i think it sounded good as far as i can remember. It said what CF was but it was mainly focused on weight, diet and body image because it is a womans magazine!! It was a paragraph about what went wrong with my peg and then the rest was about what happened on the day of the shoot. I am so nervous about it coming out as i have never done anything like this before and i just hope i have promoted CF in a way that pleases most people. I tried my best!! Ive been told its out on September 9th xx

Finally finished iv's on friday too!! Had a amazing 'end of iv's' shower lol xx

x Lots of love x

Tuesday, 24 August 2010

In loving memory x

Just a short blog this time. Both to do with CF and passing away unfortunatly.

Firstly Monday 23rd marked a year ago that my close friend Vicky passed away. It seems like yesterday that Lance turned up on my doorstep early in the morning and gave me the news that broke my heart. Even as i write this i can feel myself getting teary. I miss her more and more everyday and still sleep with her picture looking over me on my bedroom wall. I wrote a special blog for her when she passed away so I said everything about how much i loved her then. Will love you always x

Tuesday was my other friend James' funeral. I regret not going to his funeral and I kind of knew i would...its just at the time I couldnt face it. I really hope that doesnt make me sound selfish but i honestly didnt think i could cope and didnt want to turn up on my own as I dont know his family or friends as i only spoke to him at the hospital or over emails.

I went to the cemetery later on that day and took some flowers to Vicky and to James as they are both at the same cemetery. I had pink roses for Vicky and white roses for James. I got absolutly soaked as it poured with rain but i needed to go...i proberly looked like a right wally with my hood up on my own in the rain but i dont care.

So a horrible few days of sadness but great memories keep the smile and the fight going. Im also very nervous for tomorrow but that is a blog post of its own and i dont want to let anyone know until its over.

x Lots of love x

Friday, 20 August 2010

Extra iv's and no pilates

How shit is pilates!! It was soooo boring and all the woman kept going on about was making sure my alignment was in neutral and for most of the session, i was lying on my back (which i dont like as its harder to breathe) and this is not my idea of exercise as it just made me sleepy!! A friend mentioned yoga instead and i was interested in it so me and mummy are looking at doing a class next week. I have found a boxfit video from years ago which is done by a boxer and we watched it first and it is ok to do. I did 10 minutes of it today and was quite tired so aim to do more and more as time goes on. Its quite fun actually :)

I have to have another week of iv's as my cough hasnt totally gone and i didnt want to risk coming off them and my cough getting worse...scott also has a cold so want to make sure i dont get that too so he is staying away from me as much as possible lol. I had my needle changed today as you can not have the port needle in for longer than 2 weeks due to risk of infection. While i was up the hospital we went on the ward to check my weight and i had put on even though i was on iv's so i now weigh 45.4kg thats up from 44.2kg 2 weeks ago :)

Me and Jen (the dietician) have decided to try changing my feed so i get more calories per bottle. At the moment i have 1500 calories per bottle but you can get 2000 calories bottles so i have said why not have the maximum amount if i can tolerate it!! I really want to reach my target weight by xmas which is 50kg...if i havent i am putting myself on 24 hour feed and staying in the chair on it until i am a blob ;)

Oh I have added a few new pages to my blog so take a look and any fellow CFer's feel free to send me any other traits that distingush us from the 'normal' person lol xx

x Lots of love x

Tuesday, 17 August 2010

Jobcentre fights :)

Im still on my iv's and they will finish on friday - woohoo!!

Last week i felt sick for a few days (so didnt have my feed) and had really bad headaches aswell...eventually i got a blocked nose so realised the headaches were due to that as it is sinus related and really hurts!! My nose is better now so need to make sure it stays off my chest. Im coughing alot less but there is still a cough there but its moving about so i need to focus on getting it out!

I have been busy doing lots of little jobs everyday and i do not just sit on my arse like many people think i do everyday. Really annoys me when people say that (even in a jokey way) as the people that really know me, know how hard it was for me to admit defeat and give up work...i have tried many avenues into part-time work but its not going to happen at the moment and its hard for me to accept so for people to comment doesnt help my feelings or the situation. Thank you very much!

This matter was not helped by the fact that I got a result from my medical assessment which put me in the 'work-related group' which means i have to attend meetings in order to get me back to work...if i dont attend them they will stop my money. I now have to appeal this decision in order to get put into the 'support group' which means i definatly can not work at this time which means more form filling. Which reminds me....

Last week mum dropped me off at the jobcentre to pick up the appeal leaflet. I had to go to the 2nd floor so i got in the lift. As the doors opened, a big fat chav woman was standing there with her buggy and practically tried to get in the lift before i had even got out, so i had to step over the buggy and she tutted. I heard her say to another man that was nearby "i dont know why some people just cant take the bloody stairs". Normally i would ignore it or just give a dirty look and moan to everyone about it later but i was in a bad mood anyway so turned back round and told her why i didnt flipping take the stairs. The security guard who was nearby shut the lift on her and then gave me the leaflet and walked me back to the lift to go out. Mummy found it really funny outside as its her company that watch over that jobcentre in CCTV so her work buddies may have heard about me on the radio :) Well people shouldnt be so ignorant should they...and even if she didnt have the buggy i bet she wouldnt have walked up the stairs, fat bitch. and mummy have signed ourselves up to some pilates based exercise classes and the first one is tomorrow morning. Im in a state of panic but will do my very best...will let you know how it goes!!

x Lots of love x

Tuesday, 10 August 2010

x Loving Lego x

Lets get the horrible bit out the way first....

I went up London with mummy to the medical assessment on thursday. I knew i would hate it as it makes me feel useless and depressed at having to admit that im not well and cant work even though i would love to. I just had to talk to the man and go through the form that i had filled out for them. He asked me to walk across the room and touch my toes but didnt make me do lung function as i was coughing lots. It was a tiring day after travelling there and back and now I have to wait to hear the result which will be in about 3 weeks.

Friday I had to wait for my iv delivery and then take my first dose with me up the hospital to start my iv's. Lance put the needle in my port and i got weighed and stayed the same. I wasnt happy but considering i had an infection and hadnt lost weight i suppose that was a good sign. Then came the news that one of my friends, James had died the previous day. I was shocked and didnt know what to do or say. I spoke to him alot about things and my mum also knew him from the gym. He died quite suddenly of an infection that he just couldnt fight back from....i cried all the way home :( will miss you James xx

So a very depressing 2 days in a row being swamped down with hospitals and CF so needed to get away from it all. A cuddle from Scott helped friday night and then saturday we decided to still go Legoland. I was going to pull out as I was tired from the busy days and just starting iv's makes you feel rubbish before you get better but I needed the day out to take my mind off things.

Legoland was great and we had a really good time. Yes we prob looked sad and maybe slightly peodophile-ish as we were there without a young child (well...i look like a young child so we may have got away with it lol) but it was worth it. Our new favourite thing is lego now and we spent saturday night building houses, cars and a fire engine - how exciting and sad are we?? Our plan is to buy a big lego set for when we go on holiday to York - possibly the Taj Mahal which is 6000 pieces and looks amazing!!

Sunday I had a well deserved day in and yesterday, i had to go hospital for blood tests on my tobi levels to make sure they werent too high. Normally Lance comes to the house to do them but he has decided to have 2 weeks holiday which i told him is just rude as its inconvient ;) My iv's are working as i spent most of yesterday sounding like a train and coughing up loads of crap so although its nasty, its a good sign!!

x Lots of love x

Wednesday, 4 August 2010

x Stubborn chest x

I have a cough. Bummer. Started some oral antibiotics on Friday and they still havent really helped so rang Lance to moan. Apparently i am now resistant to all oral antibiotics that treat the types of bugs that my chest grows so ivs are really the only option - so i start them Friday - which is shit :(

Had a great day out up London with my friend Steph and we ended up at Madame Tussauds which was really funny. I got barged by so many foreigners so decided to stick my elbows out and join in....when we got back to the car i had a parking fine for £120!!! I was parked on a yellow line which was infront of some bays. I had my disabled badge in the window and was only in there 2 hours (you are allowed to park on yellow lines with a disabled badge for 3 hours). I am now as I speak writing to contest it - bastards!! Then whilst driving home we spotted a man dressed as a clown on Regents Street so I told Steph to take a picture...then some man got in the way and the clown saw we was trying to take a picture so he ran at the car whilst we were stuck at traffic lights....I screamed my head off (which meant a massive coughing fit of course) and made everyone laugh and stare at times :)

I have also been abandoned by my boyfriend!! He has started a football team with his friends - in a proper league and everything and Scott is the manager so I didnt see him alot last week and at the start of this week as he had meetings and then a few training I sulked and he brought me mcdonalds breakfast and we are going Legoland on Saturday :)

Im pooping myself about tomorrow as I have a medical assessment for my Employment and Support benefit. I dont know why im nervous as im obviously too ill to work and am not claiming anything i shouldnt be but i hate the fact that im going to have to go into a room with some random doctor person who is going to judge me and state whether i am fit to work. Trust me if I had the choice between feeling ill everyday or working full-time, then I know what I would choose - no question!

Will let you know how I get on x

x Lots of love x