Thursday 30 December 2010

2010, It's been a long year.

I think everyone had massive expectations for 2010. I know for one everyone was expecting summer to be amazing, full of days just dossing, nights out, BBQs, beaches and way much more. It got to the middle of August before I'd realised I hadn't done shit. I definitely took a LOT of photos. Completed the Saturday course (which you might not think would be too difficult, but we started as a class of 30-odd and ended as a class of about 10). I met my fair share of amazing people and complete bastards. I probably got ID'd more than some people will in their lives. The best parts, in my opinion, are the little things like finally getting that tattoo I'd wanted for so long, managing to get on the FdA course, and then strapping on a pair and getting over myself when I was freaking out about how much was really going to be expected of us over the next two years. Oh and the learning to drive thing. Considering I was always putting it off b/c of my hearing I'm happy I finally bothered to start learning and really just wish I'd done it sooner. Okay, so I've been learning 6 months and can't even pass my theory but dammit I WILL get there. I mean, I haven't killed anyone whilst I'm in the drivers seat so that has to be a plus, right? And driving into a field narrowly missing beheading a few sheep doesn't count as a huge setback, right?

Good.

(In fairness this was back in July when I'd first started learning, and was probably a tad over enthusiastic with the accelerator.)

Plus the zipslide was awesomely cool. I'm doing it again next year. But instead from off a bridge, it's off a building. Did I mention I hate heights?

Not so amazing parts of the year have to be considered, like the fact that I've had plenty of IVs this year, enough to piss me off to the maximum for sure. And I'm not saying I didn't fuck up during the year either. I'm 19, put it that way. It's what we do, it's our job to fuck everything up and I'll happily keep that occupation for as long as I can (and then a little bit longer).

Ooh and, Port-take-3 (er, yeah, I need a better name for it) is 3 years old on 24th January. (I got it in 2008). I'm quite pleased with this. Considering my first one lasted about 3 months, and my second lasted 5 years, I'm hoping that this one lasts even longer, cos I just hate the idea of needing another one. I know it's a simple op, but I'd definitely go for general rather than local, no matter what anyone said, cos I'm set in my ways. But it's the being put to sleep bit which I hate as it paralyses you and I fight against it. I'm claustrophobic so it's a horrible feeling not being able to move. Obviously the out come is good, freedom from bitchy long lines/cannulas and PICC lines, which I hated so much. The one and only problem I have is that it's on my right side, therefore gets a bit annoying when I'm driving, especially on the tube sitting in my neck and if my port is accessed - I always sit on the left side if I'm a passenger. At clinic, they always mention the patient who had a port for about 18 years or so. Frankly I'm just happy this one is still going.

K so... photo time, cos we all know I'm surgically attached to my camera. These are my favourites I've taken through the year.. (There's a fair few. And this was me narrowing it down)
















So yeah, it's been a long year, not necessarily an amazing year, but 2011 better kick arse.

Wednesday 22 December 2010

Driving fails and christmas-ness.

No blogging for two weeks again. I guess it's a combo of not having much to say, and not really having the time to write anything... despite the fact that I've essentially been on xmas holls since about the 8th Dec, as that was my last lesson except from the deadline on the 10th that I had. That just consisted of trekking up to college, handing in work then going alllllll the way home again, which was a bit annoying. I've actually done the majority of my college work set over the holidays out of pure boredom (and also b/c if I don't do it now, I never will. Deadlines always look a lot further away this side of xmas and new years, and the deadline for this ungodly amount of work is only the 7th Jan)

But yeah, nothings happened. I've seen friends a couple of times and had a good couple of days, but what really destroyed my mood was failing my theory test for the second time.

WHO THE FUCK DOES THAT?!

Really... The first time I failed the entire thing by one question (I got 42 out of 50, when the pass mark is 43) and passed the hazard perception fine. The second time I got 41 out of 50, and again, passed the hazard perception part without a problem. Someone hates me. Now I'm out of £60, loosing the will to even bother b/c I do actually try, I know what different road signs mean, stupid bullshit like tyre tread depths and all sorts of crap like that, and I still get asked the most retarded questions I've never come across before, and they're just there to confuse you. I want to pass my test so badly and I can't even seem to do this stupid bit. I know I'm hardly gonna be taking my full drivers test next week or something, but god, my confidence just shreds itself up when I can't get those stupid questions right. The even sadder thing is that the bloke at the test centre remembered me b/c he had to give me script for the hazard perception bit the first time as I can't use the headphones. That's pretty ridiculous.

More to the point, if I ever manage to pass my test this side of the century, I don't have a car and hardly have the cash for insurance, bucket loads of fuel, tax, etc etc. And I don't get motability so I don't get the joy of a car with that. The thing that fucks me off is that there's people (actually, CFers) who are healthier than me, can walk further than me without feeling like death and they have a motability car. And they can't even drive... I hate things sometimes. If you want to say sorry for having shit lungs and not being able to walk up the hill to your own house, yes, a car would do nicely thank you.

Obviously I'm pissed off about this. I don't even care any more. I just wanted to be able to pass my test so I can eventually get a car and stop taking those stupid taxi's to college, seeing as they fuck up and make me wait ages, or the account gets wiped clean and no taxi turns up, thus me being late and getting flack for it. The worst one was when college was closed early due to the snow, I texted the woman who changes the taxi and she said there would be one ready to take me home for 2pm. I waited. And waited. And waited. In the freezing cold entrance, and had an argument with the security guy who wanted to lock all the doors and I refused to leave and stand out in the artic conditions (not that the entrance was any warmer but it helped a minuscule amount.) Anyway, the taxi didn't turn up till 2.50pm. I was so fucking pissed off at that point. Those taxis are beyond shit sometimes.

I finished my IVs on the 16th so I was able to go out with my friends on Monday night. It was freezing but I'm pretty sure the drink warmed us up. Either that or you're just enjoying yourself too much to care that it was about -9*.

For the record, yes I did have my theory test the next morning but it wasn't till the afternoon and I don't get hangovers. I just felt really knackered by Tuesday night. My theory was that if I didn't pass when I was perfectly fine, then I can't do much worse after a night out. And to be honest I didn't do much different so... you win some, you loose some. And you apparently get some really fucked up retarded questions when you loose.

But ah... I'll shut up about my driving fails now. As nothing else has happened I think I'll wrap up this crazy ramble now (ooh that reminds me, I still need to wrap up presents..)

Tuesday 7 December 2010

Rambly goodness.

I feel like blogging but I don't think I've got much to say... so we'll see.



I started IVs on Friday, talent on actually getting to the hospital earlier than my appt as we thought the roads would be a mess due to the snow but they weren't too bad. When my colistin was going through, it was almost finished so I lowered the trip a bit to eye level so I could watch the final few drips (yes, I get that bored). I started talking to my dad, and two minutes later I realised the line was backed up with blood.

WHAT THE FUCK!

Apparently it's normal, due to the pressure or something cos of when I lowered the drip. Whoops. But it's never happened to me before so it unnerved me the hell out. Not before I took a photo though... (naturally).




Oh and cos they're wise, they gave me another one of those scales to fill out. Which I ripped up to make a snowflake; I thought this was a vast improvement. When my nurse came back in and saw I'd done this, she stuck it onto the wall :D I think she's my favourite. Seeing as it was a quiet day she hung around for a chat, and I love talking to the nurses there as I get on really well with a lot of them.



I've got a week (or, a day out of the week) left at college till we start our crimboly holls, obviously not before they drive us insane with 3 whacking great big deadlines. A few of us have been saying how I should start selling my notes from my note taker to the rest of the students in the class. I might be forced to consider it, a student loan only goes so far. Then there's the joy of repaying it...

Oh and the dr has finally agreed to let me try something new for IVs next time seeing as I've had *plenty* this year and lets face it; they've done very little except from pickle my liver. So next IVs will be Colistin and Tazocin. Never had taz in my life so this should be interesting. Except now, I'm a tad worried, as my hosp don't seem to keep you in (or at least they never keep me in) for trialing a new IV - they do the first dose in clinic and presume you'll be fine after that, which is bullshit, as anyone worth their salt knows that if you're gonna develop a reaction, it won't be until you've been exposed to something at least twice. So yeah... if I decide to have a complete spaz on my 2nd dose, I'll be screwed, seeing as they never give me an epi pen or anything like that on home IVs.

I dunno. I'll have to double check more nearer the time. I'd rather be alive when I go to Barcelona. I've already paid my deposit, so I'm bloody going somehow (and I was slightly down heartened to learn that my port won't be setting off the metal detectors. Cos you have to admit, a bunch of college students going on a trip, the beepy thing goes off, the faint-hearted amongst us will probably crap themselves.)

My eflow decided it didn't like life and died on me the other night. I think someone stood on a bit of the lead that connects to the eflow as it looked fairly bent (as i picked it up off the floor. Cos I leave stuff in the perfect places). We took it to hosp and finally got it serviced for the first time since I got it when I was 11 or something. They gave me it back with a new serviced sticker and a new chamber and shizzle like that. I forgot what it was like to have a lid for the chamber that actually works...

Ah and I have a new project for myself starting in the new year. I'm thinking of doing a 365 photos project. Just random stuff, there'll be no rhyme or reason to the photos I take, and a lot will probably be shit quality when I take them on my phone, but I think it's a cool idea, and would look really good when it's done.

Bagsy not paying for printing out the lot when 2011 is over...

Wednesday 24 November 2010

Radio silence.

Woops. Forgot about this a tad.

Right then. I had a hosp appt on Monday, which I went in to with the full intention of if I was going to be given cipro, I'd source out the nearest crackheads and sell it to them. Luckily it wasn't prescribed (and I jumped onto my whole trail of reasons why I won't-go-near-the-damn-stuff-ever-again before it was even suggested.) So IVs it is. Brill. B/c they weren't started immediately and they're scheduled for the 3rd Dec, I've just narrowly managed to score November as my first IV free month since June or something. I loose count how many times I've been on IVs. It's a narrow win, but a win none the less.

Given the fact that I've been on IVs so frequently compared to how I used to be, and how I keep catching colds (I'm blaming pred for probably interfering with my immune system therefore colds take the piss and take major advantage. I might be wrong but it's what I'm going with) you'd think that maybe they'd think about changing my IVs as clearly these ones aren't quite up to the job anymore. I suggested, he finds a third drug, and as I always have two drugs for IVs, he could alternate between say the second and the third drug every different round of IVs. Clearly I wasn't listened to again as the dr said 'Well the problem with Tobramycin is due to your hearing...' I stopped listening. For fuck sake, I didn't mean go back on the drug that has pretty much destroyed my life, go use one of the other bloody drugs! I don't understand why they find it so fucking hard to listen to me properly! Ironic that...

Oh and my port went weird. They flushed it and when the nurse took the needle out, blood, everywhere. Gahhh. My port never bleeds back and rarely ever bleeds when you take the needle out so I was a bit 'woah' about that. I have no idea why that randomly happened but my port still works fine so it doesn't matter. The bruise right where the needle went in hurts like a bitch though.

College, in a word, is busy. I can't be bothered to go on about it. But lets just say that 2 months in, 9 projects and 6 essays later, I'm a lot more busy than I was last year. I suppose that's a slight disadvantage to being on the Saturday course all last year. We did about 6 projects in total, or something and they were so short, and pretty much consisted of a brief, sticking in the worksheets we were given, the final image, and an evaluation if you could be bothered. Oh we're supposed to be going to Barcelona in March. Which is about £230. Plus I need a passport. Yay, forms(!) I'm just looking forward to explaining my sheer amount of drugs to the Spanish customs. It's 3 days/4 nights so I might think about leaving my eFlow at home just to avoid the extra stress of them freaking out and thinking it's a bomb or something.

The Barcelona thing was quite unexpected - I knew we go somewhere in the second year (no idea where - students before us have been to London or New York) so it's pretty cool. Cept I can't remember any of my yr 9 Spanish. Frankly I'd be amazed if I could.

I think xmas holidays start on the 10th or the 17th dec (3 deadlines on the 10th, so I'm hoping it's then, and we're not back in for almost a month) If you're realllllly interested in the stuff I've been doing at college, I usually put up the photos on flickr [clicky here] I don't have everything on there - I forgot to scan my first project and a couple of projects are just a few essays (or 5). Trust me, you don't want to read them.

And um... yeah I think that's it. It's not been a very interesting radio silence.

Friday 5 November 2010

College, boredom, and a potentially broken nose.

Boredom. Naturally. So obviously we toss about with the webcam on my mac :D





I should probably explain the broken nose thing first. It's most likely not broken (lack of black eyes is a bit obvious) but it seriously hurts, still, and there is actually a bruise but its just faint and across the top of my nose. With my inability to clearly bruise much, it tells you that I've had a hard thump to the face. And erm... how it happened is a bit ridiculous. I was lying on the floor, as you do, and the foot stool was in the way so I went to move it. Cept I sort of caught it instead and it fell on my face. Those corners hurt. 

I still feel like crap unfortunately b/c this stupid cold has done a number on me and now I'm basically back to where I started before IVs a few weeks ago. IVs which I had to have b/c of a cold. Fucking typical, but such is my life. We phoned the Dr b/c having hemos and coughing all night aren't really my favourite hobbies, and he said as it's too soon for IVs, it's Cipro or nothing, as cipro is apparently the only thing, without resorting to IVs, that will work on my pseudo. B/c I never see the point in cipro, it jacks up my appetite (and I'm eating next to nothing b/c of feeling like shit, so I'm not risking loosing what I've still got) I feel like crap whilst on it and once it's finished, I go back to how I started, if not get worse b/c it's done nothing in the first place, when my dr suggested cipro, I said no. No one will fucking believe me when I say how crap I feel on it, how useless it is and how I loose my appetite on it (despite that being a listed side effect) and as those stupid little tests show I'm technically still sensitive to it, they're gonna keep suggesting it till the cows come home. And I'll keep refusing it b/c I'm not wasting my time.

Basically the gist is, it was cipro or nothing. So I got nothing. That stupid hospital won't treat me. It's not my fault that cipro doesn't work, or how last time on it I ended up feeling so crap I never left my room for a few days. I don't know what it'll take for the dr to believe me on anything I say, I'm doubting he ever will. Pretty sure he thinks I'm lying about the chest pain b/c when it's mentioned, there's just this look he gives me that seems to say 'Seriously? You're still going on about that?'

It's so typical really, I changed from paediatrics to adults sooner than I had to so I could get away from bastard drs (I hated my paed drs with a passion, and I'm pretty sure the feeling was mutual) and I'm basically in the same position now. I'm trying to change consultants as I know theres two others. But no one will let me. Fucking sucks...

Ok rant over.

College is going really good now I've gotten used to it and managed to sort stuff out the best I can. The newest project we've started (they're still having us do several at a time) has us taking photos based on low lighting. One of these photos has to include the 'painting with light' technique, and nothing is more fun. Seriously. You just jump around like an idiot with a torch (or glowsticks and car lights, basically anything you can make light trails with) whilst the camera is on a slow shutter speed, and you get some seriously cool effects.






Too cool. Funnest project I've done so far. Plus it's on digital which makes it better, as you can see the result straight away rather than when you're using film and have to develop it first. I've done a lot of film. We've used 35mm, medium and large format, so we're basically covering everything. It's weird to think we started about a month and a half ago, and we're onto project number 6, and then each project has all this stuff attached - we have to do PPD AD101 which includes stuff like safety reports, 500 word evaluation per final photo (some projects are more than one photo) contact sheets, cost breakdown, etc etc. And then we also have history, and as well as that, we have visits to places where we have to write a 500 word report on each too. Busy, yes. But I don't mind it (until deadlines loom...) and I have a laugh with my friends there. I know I freaked out entirely when I first started but that was b/c I had no idea what I was doing, there was a lot more work than I realised and things like my note takers were screwed up so I had no idea what was happening half the time. But that was then. This is now.

Funny how things can change in a short amount of time.

Friday 29 October 2010

Maybe I should invest in bubblewrap...

I had IVs in August to make sure that I was well enough for starting my new college course in Sept. Although logic in starting these IVs mid august when they only last for 2 weeks, is fucked, cause college doesn't start till 21st sept, and we all know how fast things go to shit the second you finish IVs.

I got a cold mid-IVs. Tres unimpressed. But by some miracle the cold disappeared a few days before IVs finished and I thought 'YES! Still a few days for IVs to potentially work'. Basically, the second I finished these IVs, the cold came back, and IVs were thus rendered useless. I was coughing worse than before and felt horrible. Literally had no energy or breath and when I have a cold, or feel crap in general, every single task seems 10x bigger than it actually is. So I started college feeling like shit and with all the work they threw at us I just felt like I wasn't coping. I kept saying 'I don't have time to be ill' and I was just generally frustrated at my lungs deciding to be little shits to me. We had my hosp appt moved forward a week, and I was straight back on IVs, for 3 weeks. So I spent 3 of my first 4 weeks at college trying to make sure that you couldn't see my port. Or rather, the tagaderm covering the gripper needle. Although unless I'm about to adopt some nun style up-to-the-neck get up, you're gonna be able to see it.

So I spent 3 weeks fully aware that people were generally looking south of my face, and not for the typical reason you'd expect blokes to be. I finally finished my 3 weeks of IVs and then a week later had a clinic appt. My weight and LF were identical to the previous results, which were taken just before I started IVs and felt like hell. Weird, considering now I felt better. Not 100%, but definitely way better than I would have been feeling sans IVs at this point if I'd never had them in the first place.

It was a fairly annoying appt where everyone stated the obvious. After 1 1/2 years with pleurisy I got an upgraded offer from paracetamol to codeine, but I refused it. I also refused to schedule my next IVs just yet, as the plan was to wait till my next appt in four weeks and see how I was doing then. I was fairly adamant to stay off IVs as long as possible as they just annoy me now, and they just don't work as much as they used to. If anything, they just stop me getting worse rather than get me any better.

So yeah, now I'm 1 1/2 weeks out of IVs.

Guess what:

I HAVE A FUCKING COLD!!!!!!

Gahhh, I might just start kicking small children that get in my eye line just to satisfy how pissed off I am about this. Add it to being on top of concussion *sigh*... break please?

Ah yeah, the concussion.

I apparently whacked my head on Tuesday (or thereabouts). Tues evening I had a headache and noticed a bump on the side of my head, with what must be a bugger of a bruise as I could barely even go near it.

The only weird thing is, I can't remember hitting my head. At all. I bump into stuff plenty but I think I'd remember this one. Plus, add this to the fact that I rarely ever bruise so for this to hurt this much, it must have been a proper whack.

By Weds I still had a headache, and had to go on two visits with college to the digitalab and the biscuit factory. Visits that were important as you had to write a 500 word report on each. I felt fairly spaced and wasn't really taking much in all day. My headache was getting progressively worse and I was starting to forget stuff - I had to go and pick up some negatives from Jessops, and I couldn't remember the words 'it's just negatives' when the woman asked me what size my prints were.

I managed to get home in one piece, just remembering my stop at the last minute as I took the bus. My headache was now trying to form it's own persona that probably had the power to bring down cities with pure mind power by now. And I started to get a temp and talk like a spaz. I generally talk too fast and trip over my words so people weren't noticing when I had to stop and think of what I was trying to say. I tried para two times to shift the temp and it never worked and never even expected it to touch this soul destroying headache. I managed to sleep off the temp and my headache was halved by Thurs so that was improvement, but it was still on/off all day. Added fun trippy dizzy moments continued till Thurs too. 3 day headache and I was ready to break out the mallet. I never bother with para for headaches, Ibu doesn't work and weirdly neither does codeine. So I just suffered rather than become a drug dispenser. Mad, maybe. But I don't like being high as a kite but still in pain.

Pretty sure my temp was from the cold which jumped onto centre stage on Thurs. And all the joy that comes with a cold. I woke up so many times throughout the night from my sore throat which has swollen up and is now restricting my breathing, so I realllllly hope it pisses off soon, cos every time I (pathetically) cough, it hurts, loads. My headache has almost gone so that's a plus.

At least I'm as caught up with my college work as I can be. Four 500 word reports written with concussion... maybe I should spell check.

Monday 25 October 2010

You can't please everybody...

But pissing everyone off is a piece of cake. Truer words never spoken.

At clinic, as usual, I got one of those piss-annoying 'anxiety and depression' scale things where you circle the chosen answer to each question and then they add up the result from each answer (from 0 - 3) and decide if you're depressed, or something. Probably a way of seeing if the patients need to maybe talk to someone about stuff, or something along those lines. Anyhoo, these scales annoy me and my answers are always the same b/c I'm not depressed. So this time, I just didn't bother filling in the form they left with me (in the treatment room, joy, b/c all other clinic rooms were full) and I just shredded it. Irony really, cos that could point towards being pissed off and stressed. Which I am.

And I've renamed my dietitian 'captain obvious' b/c all they ever do is point out I need to gain weight. I'm annoyed at myself b/c I'd managed to get to 46kg for the first time ever, then lost it over the summer and went back to 44 kg, grrrr. I find it impossible to gain weight. I don't even know how I managed to get to 46kg b/c I'd been stuck at 43/44 for ages before that.

And now I get to sleep for a week. Sort of. I've still got to go to the digitalab on Weds and then try and find the biscuit factory (which isn't actually a biscuit factory but an art gallery, let down of the century or what) and write a report on the exhibition they have there.

I knew I'd be surgically attached to the darkroom and photoshop during this course. But I forgot to think through how many reports and essays were involved, so it looks like Word is my new Siamese twin.

Monday 18 October 2010

Not-so-nice comments.

Awesome.

Someone just had a go at me for my attitude and choice of language.

Funny thing is, this was taken through the hardcore route of the keyboard. I'd like to see them say that to my face.

It was a blog comment through that 'wellsphere' thing. I signed up ages ago and forgot about it. Basically, it publishes my blog entries on there as well as blogger. And this morning, it said I had a comment, which never happens, so I decided to check it out. It said this:

When I first saw your pic I thought you were a cute girl, right until I saw you prefer language suitable for the gutter.  May be your problems stem from an attitude that needs adjusting.  I personally don't feel compelled to offer advice to someone so immature and out of touch with the real world.  I wish you luck in the future.

Ooooh scornful(!)

It was on this blog post. I don't care what people think of my 'attitude' or the fact that I swear. I'm gonna swear if I want to and if you don't like it, I'm not forcing you to read my blog. So I'm pretty sure you know where the door is. Or the little cross in the corner.

Comments like these never bother me b/c I have the sense to be able to ignore it and realise that it's been written by some sad person who pretends they're hardcore, but in reality, they're hiding behind a computer screen. I really don't care on people's opinions on swearing. Besides, this is My blog to talk however  I want. If I wanted to type in french I would. Although personally, I do have limits. As in, I try to avoid swearing around old people or kids. (that one involves a funny story where me and my cousin were talking, and saying how something was shit. Then her 9 yr old sister stood up - she'd been lying on the floor and we couldn't see her over the bed - and walked out. Luckily she wasn't listening to what we were saying. But the second she stood up, and we noticed, we went 'oh fuck. CRAP!')

Anyway, this comment. I don't know what 'problems' they're on about. B/c that post was about coughing/needing IVs etc. So... do I have CF b/c I swear and I have an attitude? That'd be a new one.... Besides I've always thought how you need an attitude to live through all this shit. And am I really 'out of touch with the real world' and 'immature'? To be honest, I don't give a fuck. Maybe I am living in my own reality. But I'm surviving here just fine.

So do one.

Saturday 16 October 2010

MACBOOK!!!

Ok, ok, I know, I'm such a hypocrite. I've said so many times that I hate macs, mainly back when I was on the Saturday course at college, b/c they were new to me and I didn't know how half the stuff worked. Although I think half my annoyance was that there was a 15 minute limit on facebook and other sites like that. There's only so much enjoyment you can have out of photoshopping the death out of a few photos.

Anyway.

I have a mac book pro :D There's literally no space left in my room now.



I got it through disabled students allowance, so I got a bunch of lovely stuff which is meant to make my course easier, like the mac, a printer, the programmes I need (microsoft office stuff, adobe stuff -photoshop, reader, bridge etc- and lightroom) and shiz like that. Total and ultimate lining in feeling like crap all the time. This along with note takers (which I'm really greaful for but they're fucking dropping the ball big time by not turning up a lot) and taxis which I'm only paying the equivalent of public transport on, is definitley helping. I mean, it hasn't solved everything. Like me managing to develop my film wrong (apparently, although I'm sure it was just loaded wrong) resulting in a blank film and me needing to reshoot my entire project. Yeah there's no magical fix or cutting corners for that, so I still have to do as much as the average student.

Yeah it's tiring, it's exhausting, and I've only spoken to a couple of people. But I'm getting there. Sometimes I think way too seriously about just walking out and not looking back. And then I get to know another student and have a laugh on a photoshoot, and the world seems less pissy.

We'll see how it goes. In two years from now I really really hope I'll be looking at a shit photo of me holding my degree in one of those sad hats. Cos it'll mean that I did it.

Sunday 3 October 2010

Cause a brighter star is on the way.

-Apparently my course is going on a trip to the biscuit factory
-My heart actually sank a little when I found out that it's an art gallery type of place that used to be a biscuit factory
-They really should change the name. I keep picturing people walking in, looking all excited, and then being totally let down when there isn't a biscuit in sight.


-One week into IVs, and Colo finally hit me.
-I was getting a tad suspicious when I wasn't walking into stuff or feeling like I'd been to the dentist cos of a numb face. But ah, it hit me on Saturday when I went out for a drink with some friends.

      -The most amazing thing (in my opinion) happened in Spoons though - When I bought a drink (Pimms, YUM!) I didn't get ID'd. First time that has ever happened.
      -And probably the last if we're honest...
      -I just keep wondering if he's a really slacking barman or if he saw me get served earlier by someone else, who did card me. 
      -In fact she took the piss on carding me and checked to see if my licence was genuine.


      -My hands feel horribly numb (Thanks colistin)
      -I've discovered that I write like a 2 yr old whilst on IVs due to hand-numbness not letting me properly hold a pen
      -So thank fuck for note takers
      -I would have noticed this earlier only I bearly picked up a pen to write anything for the last year and a half


      -I'm driving tomorrow, and I still love it as long as I don't make mistakes (cos then you panic and more mistakes follow)
      -Cos of my amazing talent to make it rain wherever I drive, I decided to do that 'walkers rainy day' thingy-ma-bob
      -(Y'know, where you choose a place in the UK, a date and morning, afternoon or evening, and if it rains on your chosen grid, date and time, you win a tenner)
      -I'm pretty sure I'll be cashing in. I chose Hexham on the map as I usually drive through there, and it's rained literally all (bar maybe one or two) lessons I've had.


      -And will someone PLEASE stop this goddamned cough!!


      -Also, Gem needs mendy-ness *Throws mendy-ness at her* Feel free to jump on the train soon stopping at 'finally feeling the fuck better' cos I'm hoping to be a passenger soon too :)

                I quite like making posts in bullet points. Stops me having to actually think and join each sentence together, so I can just randomly mention something and move on. My brains so tied up in college I can't even pretend to have the ability to string proper sentences together anyway.

                Plus, I like lists, cos they help me feel more organised. Something college is totally not letting me do due to the fact that we currently have 4 or 5 projects on the go at once. Yes, I would gladly throw my shoe at the tutor when they open up a powerpoint of yet another project. 

                ((Yes this was random, and yes I don't really give a fuck.))

                Friday 1 October 2010

                The IV train never ends.

                And I'm back on IVs again.

                Annoyed is one word for it. 3 weeks out of my old IVs and boom, I'm back on the fuckers. I suppose I should shut up, I know people who are on them for a lot longer with even less time in between. But it's just such crap timing. If there was ever a time to not decide to get ill, constantly feel like death and need IVs again (for 3 weeks this time, something I rarely do as 2 weeks can usually last me)  it's during the first couple of weeks of starting a brand new course at college. The stress and exhaustion of the course is enough. But I hate feeling knackered at college. I point blank refuse to walk up the stairs. And if I've needed to be on the second floor I've either gone at a completely ridiculous snail pace, or used the lift, which I'm allowed to do cos it's for shifting loads of stuff from floor to floor, and disabled students.

                Clinic on Monday was so annoying. I was ill and bitchy about it. My Doctor asked 'which are your favourite IVs?' when it came clear that IVs were my only port of call. Cos hell, even if cipro did work, it wasn't gonna pull me out of this hole I've landed myself in. I got annoyed straight away and said 'well it doesn't matter which IVs I like cos I'm gonna get the same ones anyway aren't I?' And I was right. It just bugs me how I've had Ceft for every single dose of IVs (and that's a minimum of 4 times a year) for the past 13 years, and I've had Colo for the last 2 years or something along those lines. (I had Tobra every time before that). It just bugs me how they say that the IVs work b/c their stupid microbiology tests show that I'm still sensitive to the drug, and yet I repeatedly say that they don't have the right to say what does or doesn't work b/c they're not the ones going through 2 or 3 weeks of antibiotics and finishing the course feeling just as shit as you did when you started. Fuck the tests. I consider the meds work when I FEEL better myself.

                It's the cipro thing here mainly that no one seems to get - just b/c the tests say that I'm still sensitive, I don't think that actually proves it still works. For the last year, every time I was on it, it did nothing, and then the last time I was on it, I felt terrible until I finished the course. My Dr has agreed that I'm refusing cipro 'for now' but I don't think he actually agrees on my reasoning.

                The dietitian pissed me off a treat too. I worked really really hard for the past year or so and got my weight up to 46-odd kg, for the first time ever. And then I bloody lost it and I'm back at 44kg which I was pretty much stuck at for ages before. (I sort of bounced between 42 and 44kg). So yeah, the dietitian said 'So why do you think you've lost the weight?' Uhhh cos I'm ill? They don't seem to grasp the fact that when you're ill, your appetite buggers off, and then you loose weight (which in turn gives the infection a boost, so it's a pretty evil cycle). It also reminds me of the time when my Dr pointed out that I'd lost about 0.4kg one morning at clinic... a clinic where I was having a glucose test.

                Yeah, so this glucose test means you're not allowed to eat after a certain time the night before and you have to fast all bloody night and morning so they can steal some blood, give you a gross sugary drink and steal more blood. My point is cos you have to fast for 12 hours or something like that, I hadn't eaten since 9pm the night before. So obviously I was gonna loose a bit of weight. As small and pointless as the amount was. But the Dr pointed it out. Clearly captain obvious was in the room. Admiral common sense hadn't joined him though...

                Basically I'm annoyed about the medical staff which I see way too often. And also, if I get a cold during these IVs, I'll actually single handedly kill the person who gives me it.

                Friday 24 September 2010

                I miss it...

                I seem to be making this whole mental list on how life would be way easier if I could hear. It's stupid, I wish I could stop doing this to myself. Thinking about how things would just be simpler to cope with if I could take out that extra factor that hinders so much from what I try to do.

                I'm not saying life would be perfect. But not being able to understand what people say, even if they're directly in front of me, which in turn makes me shy as hell around people and feeling useless cos I can't really have a proper conversation, so many of my friends I've lost touch with cos they're busy and have gone off to uni, so they'll keep in touch with the odd phone call, which I. can't. fucking. do. I swear, if you tell me talking on the phone is overrated, I will be determined to smack you silly b/c you know what? It's basically like saying to a paralysed person 'hey, don't worry about not being able to walk, it's pretty shit anyway'. You'd still miss it, wouldn't you. You'd like to have the option to, right?

                Ok so yeah, I sort of hate college at the moment. I'll get used to it, I'm sure. But for now I'm feeling really small and shy. The only problems I'd have, if my hearing would some how fix it's good-for-nothing self, would be exhaustion from shit-timing CF and trying to keep up with the warped idea of managing to start, and complete two projects within two weeks. Call it induction week all you like. I call it 'seeing how far we can push the students to see if they'll last'.

                I'm feeling absolutely rubbish on the CF side of things. Coughing basically 24/7, and I can't stop. I got a cold during my IVs and so they basically did nothing. I hate how you can get a cold in a matter of seconds and it ruins the whole load of work the IVs (and you) have done to stay well. I've had my hosp appt moved from the 4th Oct to next Monday, and we'll see what the dr says with my lovely combo of exhaustion, hemos, non-stop coughing (which sounds horrendous, apparently, I'm actually getting the whole concerned look off my family and they never do that cos they're so used to me coughing), chest pain and getting breathless doing simple stuff. I hate feeling like this and I rarely feel this crappy.

                On the other hand, I know I'm not the worst off, and other people are feeling much worse then me so they need the get-well-ness hugs and thoughts.

                Tuesday 21 September 2010

                It's gonna be a long two years.

                So, first day... scaryscary, yeah?

                Ok, yeah it was. First day involved a fuck load of walking around and tours around campus (yeah I know I've already been here but I've not been around the entire place so we kinda had to go). I didn't really speak to anyone, I'm too shy to, and exhausted, and I can't hear what people are saying and they mumble, and it takes more energy than I had today to really listen to people so I sort of just kept with that one person who I already know. Minimal energy me means sticking in the comfort zone rather than talking to people and getting to know the others on my course.

                And you know what? I'm so tired after my first day, that I've just been thinking constantly 'I can't do this'. One day, and I'm knackered. This is a 4 day a week course for two years. How the fuck can I do that?

                We've already been given the outlines of two projects to start, which have to be done and finished by the end of Oct. DSA are taking their sweet time, and I don't have anything from it. Main things were the taxis (cos it's stupid to ask my dad to run me to college and then drive back every day) and a note taker. There's someone from student support who was signing away for the other deaf person on the course, and she had my name on her sheet, so she's there to help me too. We're pretty sure she'll end up being my note taker too b/c it'd be silly to have two support workers in one class.

                My first project is dark room stuff. I hate that, I'm not that good at the enlarger process and I really HATE the actual darkroom b/c I can't understand a thing anyone is saying as you can't see their faces. 

                And I'm just so fucking tired and worn out. I don't want to admit this to anyone cos they'll just tell me I'm just worried over nothing and I'll be fine. Clearly my logics a bit warped with writing this on the blog... but yeah. It's not like I can just pick up the phone and rant to one of my mates about it. Texts can only convey so much.

                Saturday 18 September 2010

                Rant time...

                Been feeling very *blah* lately. No idea why. I think it's still the impending college thing. Please stop fucking telling me I'll be fine b/c it's either gonna go really good, or really shit, and I can't help but think, however it's gonna go, I'm gonna have all this extra stress generated by that woman who was on my previous course but who is on this one too. Once a week for a year was enough. So a sense of dread creeps up when I think of 4 days a week for two years. Deep joy...

                There's nothing to get ready for college really. I'm thinking of not even taking my camera in for the first day - I was told that the first year is mostly film, and I really hate the darkroom part of that, so thats another sense of utter crap-ness that adds to the fun.

                I just seem to be finding stuff that pisses me off lately, not a lot seems fantastic. My last IVs were basically a write off when I got a cold during them, thought it left early by some miracle, only for it to return the next day, so I ended IVs with a cold, pissed me off royally, as I'm coughing worse than when I fucking started the things and that's not something that makes me want to jump up and down celebrating for some reason.

                Oh and driving is a fail lately. I suck at reversing round a corner. Last lesson was really hot, specifically for the time we worked on maneuvers (and then it cooled down when I drove off, talk about timing) and the sun kept catching me in the eyes a lot too. I was starting to get really frustrated, I know it takes practice but I'm not any better from when I started on the damn things. My heart just sinks when I'm wonky in the middle of the road, miles away from the kerb, and my instructor says 'ok, try again'. She's really nice and we have a laugh, but one thing that really annoys me (and why I kind of despise the dual pedal control system) is that if I stall somewhere, or stop too slow, she'll break and clutch, and then tell me to start the car back up but won't take her foot off the clutch, so I can't find the bite and start driving again. Really annoyed me when that happened at a crossing. I didn't see the old bloke on his scooter in time (woops...) so she slammed the break on, I ended up stalling and she said to start the car back up and drive off. I would have... if she would take her foot off the flattened clutch. It was even worse that a whole crowd of charvs were sitting watching at the time. I pretended I couldn't see them but it really knocked me one when they were laughing at my spectacular almost killing a pensioner, stalling, failing to drive off... grr.

                Yeah so that's my rant. Probably has a few things I haven't mentioned, not really blog stuff or things I'm trying to ignore that are making me crazy. I don't deal with stuff well. I let it collect up and it probably has some sort of amazing volcano affect to be honest. Feel sorry for the people I vent to. Really. I hate feeling like this. I'm really trying to see bright sides in stuff, have a laugh at things, but something always crops up and wrecks my mood.

                Although I've discovered hugs are a nice temporary fix to this :)

                Tuesday 14 September 2010

                Liar liar.

                All over facebook, people seem to be having a mini implosion over the fact that a CFer called Karalynn Davies, who apparently passed away not too long ago, was actually a fake. Now I'm hardly someone who's following this perfectly. To be honest, I can't follow a lot of it as it just gets more and more confusing with other people being involved and things that have happened with no explanation, but this is really starting to get stupid. It's not the first time I've come across someone who's faked to have CF. In fact there's been loads, mostly over Facebook as its a simple way to fake - all people really need is some woe-is-me, I-feel-crap statuses and if they want to 'prove' they're really stuck in club med, they'll add photos which could have actually been ripped off from god knows where.

                Kinda reminds me all about the whole Gina/Pepe/Blake shit that went down two years ago. CF (and cancer, so I've heard) seems to be a magnet for people with Munchhausen's syndrome. No idea why. I'd never wish any of this crap on anyone, even someone I hated.

                From what I've heard (although it could be just grapevine stuff that's gotten a bit confused through out the re-tellings) A woman called Claire, who actually did have CF, branded herself as 'emo' along with another friend. They apparently decided to create the fake Karalynn profile to see how much attention they could get based on looks, so they used photos from an LA model (who clearly has her shit ripped for a LOT of fake profiles, basically everywhere) along with extra fake profiles of the dutiful best friend (called Corrine, who's photos were also someone else's) and then a whole load more for Karalynn's friends and family, probably so they could cover all bases.

                I have no idea where the CF came into this to be honest. If you're going just for attention on looks, why add CF into the mix? Although some people do actually like to squeeze every ounce of attention they can get out of genuinely having CF. Sounds stupid but it's true.

                I'm gonna carry on, that's if you're still with me here. It's confusing to write out, must be just as confusing to follow.

                So... 'Karalynn' did get the attention she was after. Something started up with a bloke called Paul, and they'd message/text/call each other everyday. But they never met. Paul believed that Karalynn was real, even though his family apparently had their doubts, from what I've heard. I'm pretty sure it was Paul who brought the whole fact that this was all fake, to light, after what must have been a fair amount of digging.

                The real Claire died, and then so did Karalynn. Corrine kept posting, memorial pages and a Just Giving page (which money went straight to the trust to) were created. And then the shit hit the fan when Paul did his digging. Claire's friend who was posing as Corrine, took everything down and no one knows who they really were, if Claire wasn't just another persona to take the blame.


                There's probably more that I've missed out but it's just getting more and more confusing and I don't think anyone is really following it that well anymore.

                But either way, no one is happy. Whoever did all this lied. No one likes to be duped. But when things like this hit the CF community it really does rock the boat b/c it makes everyone paranoid and no one knows who to trust - the main reason being that CFs can't meet, or may be on the other side of the globe. So you really don't know if the person you're talking to is real.

                I'm not sure on my opinions on it to be honest. But I'm pretty damn confused myself b/c it takes a sick fuck to fake all this, to basically glamorize having this shitty illness. It's scary, it's fucking down right difficult a lot of the time, and yet someone thought it would be fun to fake it like they did. And when these things happen, it really makes you question the integrity of some people.

                Friday 10 September 2010

                Randomization.


                •  It’s 1 am(ish). I’m eating frosties (with more sugar) and I have a cup of tea begging to be drank
                • I’m aware that I’m bloody lucky my glucose tolerance test came back basically perfect, as I came to the realisation of what a diabetic nightmare I’d be
                • That realisation struck me as I was eating golden syrup with a spoon
                • Out of the tin
                • And that’s only b/c I was bored and impatient waiting for the last crumpet to pop out of the toaster
                • Along with my insane worries about college, I’m now wondering how many huge college students are going to ask me if I’m lost
                • Y’know, in the whole ‘aww it’s a tiny 14yr old who’s wandered onto campus’ way
                • I have no idea if that’s me being strange or something that has the genuine possibility of happening
                • I’m fully aware that one day I’ll probably love being thought as younger than I actually am, and be flattered to be asked for Id at every turn
                • But for now, being hit on my random 13yr olds is starting to really piss on my chips
                • In the meantime, it’s a student’s dream being able to get into places on the cheap b/c you still look young enough to pull a child fare
                • And I’m pretty impressed with myself for not spilling my frosties whilst writing this

                Sunday 5 September 2010

                The countdown begins.

                I start my college course on 21st Sept.

                Bricking it? Me?

                WELL FUCKING OBVIOUSLY!!

                I know why I’m freaking about it though, and there’s nothing I can change about that. It’s not the place, or the staff, or the photography processes that you have to do (although I hate the darkroom as I’m useless – I can’t understand a word anyone says to me as I can’t see their face and lights are banned in there). What I’m all antsy about is the meeting new people thing as I tank badly at this. The hearing thing digs its heels in here and I have no idea what people are saying to me. So I come off a bit thick, cos I’m agreeing to god knows what, or I seem rude b/c they think I’m ignoring them.

                Sucks, but what can you do?

                I get Mondays off though. The first two Mondays off I’ve got are already booked up with appointment-fun-ness. The first one is on the 27th, I’ve got the joy of going to the dentist b/c who doesn’t like being asked questions from upside down that you can’t even answer b/c someone has their fingers in your mouth poking at your teeth? And then on the 4th Oct I’ve got clinic, which my Mum is coming with me to b/c I’m really sick of my dr right now.

                There are two other consultants for the chest clinic. One who’s been there for ages but apparently is ‘really on the ball’ and he’s a laugh too, b/c I’ve spoken with him a few times. And he also doesn’t take any shit, if you piss him off or act like a moron, he’ll call you on it. The other dr is new, young, and fucking hell he’s fit. And to me, he’s way better than my current dr b/c when I had to go on the pred increase to 30mg for 5 days, it was his idea – my lungs were being temperamental bastards, as always, and had been increasingly painful for a few days, till I just got beyond tired of it and asked my Dad to call the hospital, to which they’d just said to bring me in to morning clinic. That’s the first time I saw that younger dr (b/c my normal one wasn’t there that morning, or something to that effect) and he sent me for an xray and then told me to increase pred for a bit. Which is a damn sight more than my dr has ever suggested. Even after I’d landed myself in hospital from it, he never gave me any pred. It was a few weeks later at a clinic appt, that he decided to bring up my IgE levels of 2000+ (from blood tests taken whilst I was in hosp) and say ‘hey, pred might be an idea’.


                At least theres someone who knows what they're doing in that hospital.

                Wednesday 1 September 2010

                Photo-splosion.

                Bear in mind, I have over 6000 photos since I got my camera last year, and these are only randoms that I've taken recently. And the crappy ones of me are off my webcam about 5 mins ago whilst waiting for IVs to finish. Fuuuun. Oh, and I mentioned the Spoon Theory in my last blog. Here's the link if you want to read more. It's definitely worth the read xx

                Thursday 26 August 2010

                The truth.

                Lung disease is a harsh bastard.

                I wish it would make up it's mind. Sometimes I feel really good, like I'm not even ill at all, and I feel so far away from friends with CF or whatever who seem to struggle on a daily basis. Then I have those days when I lack the energy to even get out my own room, and it feels impossible that it's just a 'blip' and you'll get better b/c each and every task is so taxing. It's all very 'spoon theory', when some days you have more spoons than others.

                I can't help but think that people see me as a hypochondriac. Especially if they only generally see me on good days, or hiding the bad days. Then if you get a really bad day that you just can't hide, no one seems to fucking believe you feel like shit, that every breath feels like you're being stabbed in the side and you don't have the energy to even sit up properly. The main reason I reckon people see me this way, is the whole pain thing. It's not something you can see. So you have to rely on the person in pain to tell you how bad it is. B/c I've had basically a year and a half of on/off pain, (and yeah I'll tell people b/c if I'm gonna suffer, they've got to suffer my whining too) which my dr seems to think jack shit of it. I'm sorry my lungs are complete arses, and are temperamental and sporadically like to make me feel like death, which doesn't necessarily look that way (I probably come off as a whiny child) and yeah I apparently seem to be looking for a miracle cure for this irritating-like-hell pain that won't piss off, but that's just how it is. I don't consider someone a competent dr when 'paracetemol' seems to be the answer for all.

                I'm not after sympathy, by the by. I'm just telling it like it is b/c that's what I do. And I didn't really have a funny way to convey any of this, so it's sounding very 'woe is me', but fuck it.

                First and last of 2018

                Oh dear. I think this is a new record, one post for the entire year (Technically. I wrote on 1.1.18 but its likely I wrote it a few days bef...