Ant's 21st!

Firstly, I am ashamed to admit that if any driver saw a spaz dressed as a grey dog dancing and yelling at you on the side of the road last Friday night – that was me. I would like to make a formal apology. The worst thing was I hadn't even drank anything. Still waiting for that day where I finally grow up. I feel mentally trapped as an 11 year old because I'm still waiting for my letter from Hogwarts. With that being said, Anthony's 21^st fancy dress was A-W-E-S-O-M-E. Everyone looked amazing and we had the best time. The people in the photo are my oldest friends and I love them to pieces. No homo <3

Secondly, I have one more assessment to go doing make-up application in college! Yay. Even though I made a terrible mistake on my lovely model Reyanne I still managed it. I swear the amount of rubbing with the brush I had to do on her eyeball to correct it I could have started a fire on her face. Another thing to apologise for. Lol. Then my exams on June 5^th. I haven't been well and had two big coughing/breathing attacks during the last two assessments but so glad I still passed. Due to this and the fact that I've been needing oxygen during the day I'm waiting on a hospital bed in Liverpool Heart and Chest hospital. Hopefully after my stay I'll be full of energy and can make the most of summer. I'm just hoping with my recently good news about my A-typical Microbacterium being cured that this big drop in health hasn't happened because I came off all my medication when it's actually still there... They've done that to me before too early and if they've done it again - BITCH I'M GON' BE MAD. Lol.

Also, I NEED to tell everyone to watch ''Game Of Thrones''. It is the best thing ever and I'm more than obsessed. I've tried enthusing my Mum about it but all she had to say was that Daenerys Targaryen sounds like a brand of noodle soup. I have to be adopted.

Decisions.

So today I got the definite news. I've known this for a while, but didn't want to say anything because I was skeptical and it sounded too good to be true. The bug I contracted at 15 years old, Atypical Mycobacterium , the bug that completely deteriorated my lung function to the 27% that remains, is gone. This is probably the reason I have started to gain weight and recently reached 7 stone (98 lbs) for the first time in my life. As from today I stop all my treatment for it BECAUSE YOU DEAD MUDDAFUKA. Which brings me down to around 40 pills a day. That feels weird.. lol. But there's more to it – now that I don't have this bug I am now a candidate to be evaluated for a double lung transplant. Not that I feel I need one yet, but now I have a decision to make. Transplant holds many pros and cons and I think before, I was comforted by the relief that I wouldn't have to make that decision. If worst came to worst I couldn't have a transplant because of this bug, but now I could. So right now instead of stressing myself out whether I should have a transplant when the time comes I'm just going to appreciate that I have the choice. Hope that makes sense.

Here is a photo showing how much air lungs can hold at what percentage. Being lower than the last image at 27% you can get an idea of why I sound like Darth Vader with laryngitis when trying to climb stairs.

But for the record in case anyone with CF thinks they have me beat in the bug department think again, losers. To join my Pseudomonas, Aspergillus and Stenotrophomonas Maltophilia I now have a new addition – Pandorea species. I like it, it makes me sound like something out of Avatar. So if everyone could just call me ''Neytiri'' from now until forever that would be great, thanks. 

I'm serious.

Not much else has happened recently. I learned to write in runic to add to my priceless large variety of useless knowledge, I registered to vote, passed my college exams and I'm pretty lucky to be alive today because my dog sat her ass on my face while I was sleeping last month and I nearly suffocated.

I really need to update this blog more often. I'll make it my 4 month late new years resolution.

I think that's all right meow. Until next time :)

 

What's been going on?

I haven't wrote in so long. So much has happened the last few months, not all of it very happy news. But first of all I got accepted into College! Yay! I'm doing skincare and make-up and I can't even begin to explain how great it feels not being at home and doing something I enjoy. Being in college is just what I needed. Although I wish I hand't worn my hair up for my College ID photo, the crappy webcam makes me look like Sinead O'Connor, and not in the good days. I seriously cannot wait for my make-up kit to arrive and start practising on my mothers face against her will.

Today. I have waited for today for 5 long months. Rocking back and forth in anticipation in what seemed to be a dark, never ending abyss of nothingness. I was beginning to loose my mind, I was lost, confused and loosing all faith. But it came -THE VAMPIRE DIARIES SEASON 4 STARTED TODAY. AAAARGHHHH!!!!

On my health side of things... Last weekend I took a bad turn. So this Monday my Nanna and Grandad drove me to Liverpool as my parents were out the country. I am so grateful that they took me, but considering my Grandad's track record of life and death situations I was a little apprehensive about him driving to say the least, but eureka we arrived alive. The Doctor wanted me admitted but me being me I was having none of that of course. So we agreed to have 2 weeks of at home IV treatment. This week has not been easy. I've been unable to walk to my room so I've slept downstairs on the sofa and stayed on Oxygen. My cough has been so bad I've coughed until my my lungs have no air left and even then I carry on coughing unable to get a break to breathe back in. It can go on for so long it's scary and it hurts. BUT, today I have not used my Oxygen and walked around the house. I'm not 100% but I'm feeling so much better. Only downside is I'm coughing up a load of blood. But that's to be expected after the amount of strain on my lungs the past week. I think I'm over the worst though so I'm super relieved!

On a very sad note, on September 22nd my dear friend Lucy Wilton tragically lost her battle against Cystic Fibrosis at 15 years old. We talked so often about when she would get her shiny new lungs and how this time next year she could be outrunning her brother, ditching the wheelchair and just simply, breathe. She was so optimistic and bubbly that it didn't really sink in that this was only a possibility, an ''if the lungs came''. So last week Ceri and I took the train down to Birmingham so I could say my goodbyes. The funeral was beautiful, her parents Jo and Ryan did a more than exceptional job. She did have requests for her funeral if the time came and had her Dad dress up as Michael Jackson on the day. That was just so Lucy, she was always hilarious. We'd call each other fat cow insults but as neither of us could ever gain weight they were always compliments. A song that was played was ''Affirmation'' by Savage Garden. I think everyone should go and listen to the lyrics on it. I've had it playing non stop all week. I will always, always remember all the good laughs we had, and from now on I'll dance for the both of us. There will never be anyone like you Luc. Gorgeous, witty, One of a kind x

Luc's funeral in the Bham paper :

http://www.birminghammail.net/news/top-stories/2012/10/05/colourful-farewell-to-tragic-kingstanding-schoolgirl-lucy-wilton-97319-31969867/?fb_action_ids=472179636150148&fb_action_types=og.recommends&fb_source=timeline_og&action_object_map=%7B%22472179636150148%22%3A414647201923964%7D&action_type_map=%7B%22472179636150148%22%3A%22og.recommends%22%7D&action_ref_map=%5B%5D x

Please become an Organ donor. You have no idea how much this means. Be someone's hero.
Sign here : http://www.organdonation.nhs.uk/ukt/ x

Eventful Week

So the last week has been pretty eventful, I visited my Nanna for her Birthday who is probably a hundred by now, and spent the evening listening to her jokes that were hilarious. Not because they're funny but because they suck on a whole new level. I love my Grandparents. On a sad note, my beautiful rabbit died. He was 8 and a half so had a long run, but being so hot this last week I wish he could have hung on a little longer to enjoy this weather. I'll always remember my species confused rabbit, forever trying to hump the neighbours cat. In the face.


Also this week I went wine and cheese tasting with my besties. At first I was disappointed to find that none of my favourite cheeses were there such as Babybell, Dairylea cheese triangles and Cheestring - but I found the blueberry cheese very nice which made up for that. At least I think it was blueberry, the cheese was blue? It was in aid of the Darren Rhys trust. Darren was an amazing, caring, out of this world friend who tragically lost his life at 18 in a motorcycle collision on Boxing Day 2009. I remember my sick days home from school and he'd be on webcam with me lining up all his booze on a table and teaching me the names for each one through the computer. He always had time for everyone even if you just wanted some company. I constantly made fun of him for having a pink girl phone. He was a legend to say the least. His brilliant Mum Hazel now raises money for better Youth Facilities in Gwynedd. She is carrying the Olympic Torch today and is going to hike up Kilimanjaro! What and amazing lady.

Today was clinic. So drove up to Liverpool at 7. Lung function was 35% so pretty normal. All is good! For those not clued up on lung function -  It's a machine that measures the amount of air I can blow out in one second. A healthy person's is between 80% and 100%. When you're around 32% that's when you get considered for a lung transplant. But I am very lucky as I cope very well on my low numbers. Hopefully won't have to think about transplant for a few years! During my consultation with the doctor I noticed a spider on the floor, fearing that he was a ''stomp on the bug'' kind of guy, I got down on my hands and knees mid conversation to pick it up and put it out the window. I realised this was a weird thing for me to do but my Doctor just waited there for me to be done. I think they all have accepted I'm not very normal. This makes me happy.

Well I am undecided at the moment what I'm going to do with the rest of my day.. We shall see what happens! Until next time..

The Beginning

So I've decided to start a blog. I don't know how this is going to turn out.. I'm no writer, last time I ever wrote in detail about myself was in my diary at 12, which was mainly adventures of me and my first hamster. I think those adventures killed him. I have 4 others in the back yard who will probably agree with me. Anyway, I'll probably treat this like a diary, following my life, my health with Cystic Fibrosis and thoughts. So this will be something different! I hope it's not boring and people will enjoy reading the absolute crap I have to write. Here goes nothing...

So basically a bit of background. It's only the last 3 years I've become open about my CF. In school I only had a few friends and teachers who knew I had it, and a couple of best friends who were supportive. I wont go into detail, there's no point dwelling on the past. Once I was in college my health declined rapidly to a point where I couldn't pass it off as Asthma anymore. I started needing Oxygen and my daily pill intake was upped to 47 tablets per day and I would collapse taking 12 steps to the next floor. To my surprise everyone in College was so supportive when I told them, and I didn't have to hide that part of my life any more. They told me not to hide who I was as it was a part of me. I was the happiest I'd ever been in my life and still am to this day. These people changed my life and a huge weight was lifted off my shoulders.      
        Hiding my CF was like having a third leg and spending my whole life covering it up because other people didn't like it. I was stressed and unhappy. So now I have started raising awareness for a cure. For all my friends with CF to breathe easier, deeper and longer.