Monday, 27 July 2009

...From the depths of boredom.

Have you had your dose of irony today people? If not, no worries, I always carry extra...

There is a programme called 'MyDeafLife.com' I don't know what its about, and frankly, couldn't care less. But the irony? Oh yes, it's on a channel which doesn't have subtitles.

Sing it with me: 'I-R-O-N-Y!'

I haven't done much. Still waiting for Monday, my well awaited 18th. Over the years, I've definitely grown up, birthday wise. 10 years ago, I would have been irritating everyone I could reach with 'Its my birthday in a month!', 'It's my birthday in a week' and 'It's my birthday in [insert number of hours here].' Now, I'm not actually bothered. People, well, family, keep asking me what I want for my birthday. I can only think of one thing. A book. A book, people! That's all I want for my 18th. It's a good book though. The last in a series of 10 books by Louise Rennison. And I don't care if the book (Ahem, 'Are these my basoomers I see before me?') is a teenager-y book, because they're good to read and laugh at. Other than these books, and things like 'Harry Potter' I don't have any favorites. I don't even have a favorite genre yet. I really need to branch out, but the problem is, if it's a crap book in the first few chapters, you've lost me already.

Sign language is still bugging me - should I learn and admit I'm deaf, and give myself another way of communication (both my Dad and Gran have said if I learn, they'll learn too) or should I refuse to learn on the grounds that a, I don't think I'll retain enough information to successfully sign and b, I fucking hate being deaf.

I've slacked a lot on my running, but mainly for reasons like the rain. There is no way you can make me run/walk for 15 minutes in the rain (and that isn't including time for me to stop several times and gain my breath back). I think its a good idea not to go traipsing in the rain anyway - the only thing it would amount to is a cold. I did, however, find a wall covered in ladybirds on a run last week. I stopped by the postbox for a breather, and noticed a little red dot scuttling along the little wall. A closer look around the wall revealed another 14 ladybirds running about, and a few weird bugs that looked half Caterpillar, half centipede. I went back down the next day with my little sister, armed with my camera. When I got there, I managed about 5 pictures, and then the batteries died. And I just couldn't be bothered to go back up the hill for more batteries. It's a pity, as I wanted a cute picture of about 6 ladybirds who had crammed themselves into a small chip in the wall.

Oh, and I found that the network that my mobile phone is on, is shutting down, or moving to bigger companies or something along those lines. So I'm annoyed, as this network (for 16-24 yr olds) would give you £15 worth of credit, in exchange of getting a few adverts in texts throughout the day. They didn't bug me much, so it was worth it.

My laptop has only just recovered from having some sort of mini-fit. All I did was accidentally plug in a USB cable the wrong way, and for some reason, the USB hole bit is missing something - the black bit that stops you from putting in a USB cable upside down. Anyhoo, so I plugged it in, realised that it was upside down, went 'oh shit' and my laptop died. It refused to even switch on the little light that means it's charging. After begging it to switch back on for probably 1 1/2 hours, my Dad came home and fixed it in 10 minutes. Even though he doesn't know what exactly is wrong with it. I know whats wrong with it - technology hates me.

Oh and I got my hair cut yesterday. In any picture I've got on here, I've got long hair. And do you know what I've done? I've had almost half of it chopped off. When I got out of the chair at the hairdressers, the amount of hair she had chopped off was probably enough to be ankle deep. Although I did ask for that much to be chopped - it was just far too flipping long, and kind of like a split end party. So now my hair is what you can call 'shoulder length' and I like it, but I'm not used to it yet. I'll put up a picture eventually.

And as you can probably guess, I'm bored. I'm even bored of Facebook. What does that tell you?

Wednesday, 22 July 2009

Such is my life.

Ah, waiting for my A2 results is SO nerve racking, and it's not for another month. Great. If only I had something to occupy my time with, say, going to a party or two. Oh yes, that's right. My mates don't tell me when they're having one. Don't get me wrong, I love my friends to bits, and more, but I'm really hating this new decision to exclude me from having fun. They're either forgetting about me or thinking that they'd rather I weren't wherever, as you can't claim that a party is totally last minute when pretty much everyone you know is there. It just means by the time you've remembered the one person you didn't tell, it's most likely past 1am.

I'm so fucking bored its just not funny anymore.

I went to see Harry Potter and the half blood prince on Tues. It was good, but they did miss out a few things, and replaced them with bits that weren't in the book *cough* Lupin-and-Tonks-totally-weren't-supposed-to-be-together-yet *cough*. But I saw a subtitled version, and I'm glad I did. It was only half way through the movie when I realised I've followed the entire thing, rather than sitting there, trying to understand the odd sentence. I think the only downside was that I was sitting in front of the kind of person who kicks your seat throughout the movie. And she was an adult too. I mean, geez, keep your feet to yourself! (Or sit at the front of the damn theatre!)

I think the sad thing is that this movie is what I've been looking forward to for weeks, and now its done.

Before the movie started, everyone was talking, like you do. But it was different. Bear in mind I said I saw a subtitled version. This meant being surrounded by other deaf people, and it was surreal. Groups of friends were talking in sign language, and I wondered why I've never bothered to learn. I've always thought that I'd find it difficult - learning foreign languages were never the simplest thing for me, so why should sign language be any different? Plus there is the fact that I've been against learning sign language as that would almost be like admitting I'm deaf, and being Ok with it. For the record, I don't think I'll ever accept my deafness with open arms. After all, just 8 years ago, my hearing was 100%. An even funnier (in a deeply sarcastic way, if you will) thing is that my entire family, all generations and all ages have perfect hearing.

I'm happy that my 18th is less than two weeks away. First off, I'll have less chance to be classed as 'some teenager', as 18 qualifies as an adult (yeah, I know the age still has the word 'teen' in it, but surely it has something to do with the new totally legal ability to buy alcohol) and you get treated with more respect rather than 'kid, piss off, won't you?'. I'm kinda directing this to some woman who bogarted the CF boards a short while ago. And I'm totally Ok with a bitch session about her, as she was frankly, totally rude, and I really, really doubt she's reading this - I was one of the main people she, well, to put it in a light and fluffy way, didn't really like.

So, she wanders into the CF forum, and starts banging on about this herbal method that she's been using for years, claiming its much more effective than any of our Doctor recommended things, and pretty much tells us that we're taking poison. (When people argued about this, she quickly changed her previous posts and said we were lying.) So, many people were wary, I mean, she was pretty much mentioning these products in every single post, and sounding quite like your average door-to-door salesman/woman who just won't go away. I argued about it a bit, and then in every single fucking post, she mentioned how she was being 'attacked' by us (because apparently, we aren't allowed to have our own views) and that a few stupid teenagers were causing the main argument. Now, me and Rob -yo!-, a guy who is also on the board (and has a blog, it's in my blog roll) were the main arguers, and he is 18. Regardless that we're both old enough to have our own views and prefer the adult section rather than the teen section of the boards, and the fact that many people believe that a teenager with CF is relatively more mature than a random healthy 17-18 year old, this woman pretty much calls us stupid teens and in short, it sounded like she'd rather we'd go back to the kid section of the board.

Was it because we're 17/18 that this woman chose to pick on our responses, saying that we're a bunch of kids who are just looking for an argument? Either way, I'm glad that at least some people will stop treating me like a kid. No offence to anyone on the CF boards, as you're all totally amazing and wonderful *insert many more lovely fluffy words here*, but at the moment, I can't help but feel that no one actually reads whatever the hell I put on there. There's completely random topics that people will flood with replies, and mine don't even get much of a look in if I'm honest. I think that others just think I'm a kid right now, and I've got nothing interesting to say. That, and my amazing ability to ramble on several paragraphs.

Friday, 17 July 2009

London photos!

For your enjoyment, my photos from London! My Dad took a lot more (when we added my own photos onto a disk, there was a total of 1300 or so files, including a few videos, like rides on the limo and stuff.) The pictures on the slide show are all of MY photos that I took, bar one or two that included the 'rents or my sis. Sometimes holding onto a tiny bit of anonymity is a good thing!

http://static.photobucket.com/flash/rss_slideshow.swf?rssFeed=http%3A%2F%2Ffeed273.photobucket.com%2Falbums%2Fjj225%2Fmeggzzie16%2FLondon%2Ffeed.rss

This is a link to a photobucket slideshow. It took f o r e v e r to upload these pics as my laptop is slow and hates me, so everytime I uploaded photos, it would either freeze or take in excess of 5 hours. But it's done now, so I'm happy.

EDIT: Yeah, I'll be adding more pics, ones of which I'll be in, but these are the ones that I took on my own camera. I'll have to sort through my Dads 1000 odd pics, which will probably take plnty of time :)

Saturday, 11 July 2009

My memory is officially crap.

God, I'm stupid. I've only just realised, I'd probably have a better job fighting off these infections (thank you, Pleurisy) if I gained some weight. I've already decided that my legs are far too skinny - in a way that my skinny jeans are still loose. Fashion nightmare or what?! Anyway, as I was saying. I need to gain weight. So for however long it's taken for me to realise that (Ok, I've always known it, but something has only just clicked - Skinny Minnie = crap health. Duh.) I now just have to figure out how. I've had a nice boost from pred, and it looks like our faithful little steroid is worming its way into a more permanent fixture of my tablet routine - its now 10mg a day 'long term'. I'm fine with that. Without it, I eat less than a dormouse.

So, can everyone just chuck their calories my way? Much appreciated, thanks.

Oooh, you know what I did... I bloody went and forgot to mention the stitch/pain thing whenever I run. I know mentioning it in this blog is practically becoming mandatory per post, but somehow it slipped my mind when I was at my latest appointment. I don't even know how. It bugs me basically all the time, and when I was actually talking to the Doc, the one guy who probably has a faint idea of what it is or if there is anything they can do for the crippling pain associated with exercise, (ergo, minimum of moving in a brisk pace for more than 50 yards) I bloody went and forgot, and have to deal with the pain for a further 4 weeks till my next appointment. I mean, geez.

My slide show of London photos is still out of reach - I made one in Windows movie maker, and every time I try and upload it, I get an error before it's finished loading. So I tried splitting it between two slide shows instead, thinking that it was maybe the sheer weight of 200 photos causing the problem. Obviously not, as the same thing happened again. I tried several times with Slide.com and other sites similar to that, but after uploading 20 photos, every time, some stupid thing says something about a 'run time error' and 'must end in an unusual way' (i.e. close the browser automatically and leave me completely frustrated and screaming into a pillow.)

*Sighs* Hopefully you won't mind waiting for the photos until I find some miracle way to put them on here. Because frankly, you don't have much choice till blogger lets me!

Ok, this is well and truly pissing me off. Cinemas are supposed to show subtitled screenings of at least the top 5 box office films at the time or something like that, and the only reasons why they won't show a subtitled version at least once is usually because its been shown at a nearby cinema or they've only got a certain number of screenings. Anyhow, you'd think they'd show a subtitled Harry Potter and the Half Blood Prince, right? Well I've been checking the Odeon site now and again, and the nearest place showing a subtitled version is in Harrogate. That is like 1 1/2 fucking hours away. And the next nearest place is more than double that I think. So I'm furious. Its practically discrimination -we just can't be arsed to show a subtitled version of basically the most popular movie at the moment. Grrrr.

I was really looking forward to that movie too.

EDIT: I found a subtitled screening, via sending several emails complaining on why there weren't any subtitled screenings as far as I knew. Funnily enough, one of the replies I got said 'I don't know who you've been talking to, but we do have some subtitled screenings....'. I hadn't been talking to anyone, I'd been searching several official cinema sites in vain trying to find a screening. I managed to find one at the Empire, in Newcastle/Gateshead/whatever side it's on, and because I ordered it online I therefore get a free upgrade to the comfy seats. And its £2.20 cheaper than the Odeon. Hahahaha....

Tuesday, 7 July 2009

Unaccomplished expectations.

I've had a fairly uneventful week. I went to clinic on Friday, and my PFTs are holding steady at the exact same number they were last month. That's good and bad. It's good as it means the numbers haven't declined, but it's bad as I was hoping for an increase after all this effing running. I feel like I've accomplished nothing, even though I've only been running for a month and a half, and I'm sure that the incessant heat has had some effect on me (and not necessarily a positive effect either). I was so hoping for an increase of my PFTs, even just by a few numbers, and instead I get the exact same numbers as last time. I suppose you could argue that I haven't had IVs for a while and that had I not started running, my numbers would be lower, but I still have an empty space where I was hoping for some feeling of accomplishment.

I've got a month till my next appointment, where I'll be getting IVs. Ceftaz and Colistin. I haven't seen the 80's in my PFTs since before I went on Meropenum IVs around Feb or March, and I'm still annoyed about that. I was SO against Meropenum, and the Doc pretty much forced it on me, even bringing in another Doc into the room to argue with me. I mentioned this when it happened. The stupid thing is, the argument was pointless as both doctors hadn't listened to me - they thought I was against IVs full stop, which is ironic as I was the one who suggested the need of IVs, having not had them for about 4 months at the time. I was doing great then. It was the first in a long time that I'd gone 4 months without IVs. In fact, I would have been better overall without IVs rather than the Meropenum. Plus there's the pleurisy. It apparently takes a while to get over it, so when I get higher PFTs, I will consider pleurisy well and truly whacked out of the park.

I'm giddy for the 6th Harry Potter movie to come out. Probably even more so this time as I'll be finding a subtitled screening to see, and actually understanding the movie at the time :) And then it's my 18th on the 3rd August. My IVs are scheduled for the 5th. Just as well that I don't feel like going on benders to celebrate my 18th! However, my friend is having her 18th party on the 16th and it always bugs people when you're the only person who refuses to drink at a party. I have my priorities about me now, and I won't be drinking whilst on IVs, and hopefully I won't spend the night coughing either, as I'll be more than halfway through the two weeks. I do have to figure out times though - we're trying to avoid the need to make me have a dose at the party, which is easier than in the past, as now I just get two doses a day rather than 3. We'll just have to wait and see!

The heat seemed to go away recently to be replaced with relentless raining. How fun(!). Whilst I was at London, I ate a serious amount, including having loads of smoothies. When I was at clinic on Friday, I was sure to see a nice whopping boost in my weight. And I'm still waiting, as I only gained 0.2 kg. I thought I'd gained at least 1kg, but I didn't manage anything near it. And all because of the stupid heatwaves we've been having. I obviously lost all the weight I'd put on through the stupid heat. So there is another sense of un-accomplishment joined with the lack of big PFT numbers.

I'm enjoying Torchwood, season 3, which started last night. I didn't realise how much I missed it! The other channels on Sky which show Torchwood never have subtitles, except from the episode I saw on Saturday night. I was so giddy to finally watch Torchwood with subtitles, but I expect that next time I get my hopes up about Watch or whatever the channel is having Torchwood with subtitles, they'll go away. Kinda like when I would watch old Casualty in the morning, and then the next day, subtitles were never seen on the programme again! It's almost like discrimination against deaf people to be honest.

And finally, my London photos. I've made a video on Windows Movie Maker, but blogger kept having errors when I uploaded it. I tried making one on slide.com, but with the amount of photos I had, the screen kept shutting itself off. I'm probably at the point where I wouldn't mind crawling into a small hole and screaming. But I'll try and solider through and get my wonderful pics on here. Y'know... somehow.

Wednesday, 1 July 2009

My trip to London.

Soooo much happened. And it was unbelievably fun. There was ONE downside, which was completely uncontrollable, which was the weather. I swear I melted. I did actually think my converses were melting onto the pavement until I realised I was standing in chewing gum. I found it hilarious.

Anyhoo... After the 3 hour train ride (sped up mostly by reading Harry Potter) we taxi'd down to the Radisson SAS hotel and dropped off our bags, then went straight onto one of those open top bus tours, which you can hop on/off when you get somewhere you like. Which we did. A few times, involving more walking about in the sweltering heat, and then getting back on the top of the bus and enjoying a nice breeze, interupted by those charming traffic lights. I took about 150 photos on the bus alone, and LOADS more over the next two days.

Tuesday, we got up fairly early, around 7ish, which to me feels like the crack of dawn. The limo (Yeah!!!) arrived right outside the hotel for 9.30am and took us to Topshop. When we got there, we went to the 'style advisor' area, where we talked to two style advisors and then they went round the shop to pick out some clothes to try on. Basically, pretty much everything from the 'Petite' section (seeing as I'm such a small kiddy). After about two hours of jumping in and out of the changing room, and also having lunch brought down to us (the style advisor place is actually underground, as is most of topshop, but its really nice and bright) I chose the stuff I liked and bought it with some of the 'Shopping money' that was given to me from Make-a-Wish. I spent £300! But sooooo worth it, as now I'm gonna look much less like a 12 year old kid in a naff t-shirt, and I've got plenty of skinny jeans and t-shirts to go with leggings (despite me complaining that I hate my skinny legs, the style advisors had a lot of leggings and t-shirt suggestions).

After we left topshop, we wandered down to Primark, because who doesn't love that shop? Actually, to say we walked was an understatement. I didn't realise it was actually on the other side of the mile and a half street, and we were all once again knackered in the heat, so getting into a A/C'd shop was a nice slice of heaven. I went into a few other shops on our way back down to Topshop as that was where we said we'd meet the limo, to go down to Harrods. And Harrods - defiantly different than what you would imagine. Although I could happily marry the sweet department. Mmmmmm.

After that, we went to the Hard Rock Cafe and....um... wow! I love it in there. I had a hurricane berry smoothie, where you get the souvenir glass for free, a normal cheese burger, but obviously much better than your typical burger, and then I had a sinful hot fudge sundae for pudding. YUM. I'm surprised I could walk after that. We went to the shop after and I bought a Hard Rock Cafe T shirt and keyring, and I also bought my little sis the T-shirt she chose. After that we waiting for the Limo and went back to the hotel. We'd also bought some little champagne truffles from Hotel Chocolat for the Limo driver, as a thank you.

Then today was the last day. Still getting woken up at the crack of 7am, and we went to the aquarium first, until it was time to go to the London Eye. I got a load more photos from the eye, and it was boiling hot again when we left. We pretty much just walked around (much to my protests - I can't stand walking around aimlessly when my feet hurt and it feels like 100 *C.) until we went to the train station. We did have a bit of a wait, but eventually the train came chugging along and it was the glorious 3 hour ride back home. Where it started to rain. Typico.

I've put all my new lovely stuff away and I've kept all the things like receipts and daft stuff like that. My Dad said I should make a collage out of it, as half of the stuff is things like the tickets to the places we went, and its actually a good idea seeing as I'll be bored again pretty soon. It's getting on now, so I'll catch up on my sleep tonight and upload the photos somehow tomorrow. I'll have to check out the slideshow idea I thought of, I'm not sure I can actually put the slideshow in the post or not. But I'm tired, so that's tomorrow's issue.

My annual ridiculous hospital adventure

I find it annoying I only ever blog when something like an admission happens, and even more annoyingly, thats why I'm blogging this ti...