Saturday, 28 May 2011

Finally finished.

Year 1 at college is DONE!!

Wooohooo!!!

Right, if we're getting technical, I've still got one last tutorial - a 10 minute one on one talk with the tutor to find out the results of my last 2 submitted projects, and to find out if I'm into year 2. A lot of us aren't worried about this - one of the projects is part 2 of something, so if you passed part 1, then you've passed the whole thing as the two grades just get added together. Plus, you can still fail two projects and get into year 2 anyway. Most of us have passed everything so far, so it wouldn't even matter if we failed the final project (But yeah, that would kind of be a kick in the balls). I actually finished on 20th May as that was the final hand in date, but I have been, in fact, sitting around doing fuck all since.

That people, is what I do best.

Msn is so boring now. I used to talk to Bree a lot on there. And whilst we hadn't talked for a little while due to her eye sight going, it was different b/c I knew she was at least alive. And now shes gone I find myself looking for her name when I sign in. It's the lungy people who are usually on msn the most and you can usually find someone to talk to. But now I've noticed it's really quiet. It kinda sucks.

In other news, I managed to completely forget about a driving lesson, b/c I'm a total winner and misread the date - I thought that the lesson was on Friday at 1.30. But it was actually on Thursday. So I got a text whilst I was in nandos (Again. My god, people, that food is heaven) asking if I was okay, b/c I've never missed one before, so it was a bit out of character apparently. I'm still getting charged for the lesson I missed (booo) but she managed to fit me in for a lesson on Friday to work on maneuvers cos that's what I suck at most. And that's what she wanted to work on in Thursdays lesson - I don't practice maneuvers in my car when I'm out and about, and I just park shittily in any space I can find. I also use the hell out of my disabled badge just b/c I can, and b/c I sort of enjoy the annoyed look on the faces of the old jealous people. So, I'm not looking at missing Thursdays lesson as a fail b/c a, I went to nandos, b, I drove there, which is what I'd do for 3/4 of my lesson, in between chatting and being crap at parallel parking, and c, I got another lesson for Friday anyway.

Isn't my life fun?

I'm trying not to be a whiney bitch (aka, some of my recent posts in the past couple of months) but sometimes the only way out is to bitch and then you can just carry on with life, kicking small children in the face when they piss you off and so on. But the odd outburst is inevitable and you either feel better for it, or you feel all your good karma evaporate and it can only be solved with.. oh, this would do nicely:


Yes please :)

Wednesday, 25 May 2011

RIP Bree



Rest in peace doesn't seem right for Bree. She was always the loudest and brightest soul, so she'll definitely be the same no matter where she is now.

I know people are a bit confused by this, and I don't want to drag it out so I'll just keep it short.

In January, she contracted a neurological virus. It made her dizzy, and sick, and messed up her eye sight. Eventually, the dizziness started to fade but her eyesight got worse, to the point of being registered as legally blind. Then things just got worse from there. She was in and out of hospital a couple of times as they tried to figure out what was going on. And then suddenly out of the blue, I heard that she was in ICU and unresponsive. Next, was that she was on life support. A week ago, she was taken off life support but kept holding on. People got confused and thought that she'd passed away at this point; this wasn't true, but she was still unconcious and not really getting any better.

This morning, 25/5/11, she passed away. Bree was only 25, and had her lung transplant due to Bronchitectasis on 7th August 2009. She was doing amazingly, accomplishing loads with the new lease of life she'd wanted and needed so badly. I know she was a big believer in signs and spidey senses, and she was a cracker for decoding dreams (If I ever had a dream that made no sense, she'd be the first person I'd tell and everything would make sense again) so I'm sort of going to keep my eyes open for any little signs that let me now she's okay where she is. It's definitely the kind of thing she'd be looking for - I know she'd found signs from people once they'd pass and things would make sense, or have a dream about something that would actaully end up explaining something that hadn't even happened yet, but when it did, everything would fall in place.

She once told me, the reason why she never panics when she looses something, is b/c she'll have a dream which will help her find where she lost whatever it was. 

I'm talking shit. I can practically hear her going 'Smarten the fuck up!' which always helped knock some sense in me.

Basically, I'm going to miss her like crazy. She was the first friend I had who had a lung disease. We read each others blogs, talked on facebook and msn, and even tried to skype despite my fucked up hearing. I think what made us close was, it wasn't widely known but her hearing had been affected by the drugs too, just not as badly. I've got way too many memories of hilarious webcam chats on msn which kept me laughing for ages and we'd call them good physio. We shared an insane tea addiction, seriously, I've never been able to talk about tea and different types and so on for so long to any one person but her.

So Bree, this cup of tea is for you xxx

Ignorance is your new best friend.

I'm tired of being a voice that is never heard. No one believes a thing I say when it comes to the medical side. They're always the ones that are right. Fuck how I actually feel as long as they believe the bullshit they're spouting and my sats are good, what they say is basically gospel and MUST be right. Its so frustrating and has happened so many times its irritating. A massive example of this is the cipro argument:

I won't take it, I refuse to take it, b/c the last couple of times I took it (Last time was Jan last year) I felt like crap and finished the course not feeling any better, but almost worse, if anything. But I'd have my lung function tested and the numbers were good, a bit higher than they were just before starting it. So therefore it worked, regardless of how shit I feel. What everyone chooses to ignore, is that once the drug is out of my system, my LF will go back to what it started at, if not lower, and I'm still feeling just as lousy as ever. Everyone - Drs, nurses, my parents, will just refuse to listen to me and keep suggesting it. I can't even stress this enough. It's like saying 'Hey, why not try Tobra IV again and see if this time it wont fuck your hearing up a bit more'

When I think something's wrong, no one believes me b/c they refuse to believe the words of someone younger than them. It doesn't help that I look literally 15. So somewhere in the back of my head they're thinking 'she doesn't understand what shes talking about, so shes wrong'. I've self diagnosed (to myself) and been right when eventually other people have confirmed whats up with me in the past. Like Pleurisy, 2 years ago - I suggested that the pain I was in was pleurisy. I was told I was wrong, and sent home on IVs. Ended up in massive pain which resulted in me going up to the CF ward. After the dr fucked about with tests checking my gall bladder, he eventually said it was pleurisy. That's what I said a week ago. But I was ignored.

As always.

My parents side with the dr. If he chooses to ignore me once again and suggest cipro again, I get pissed off looks b/c I refuse it. Again. Despite the fact that I'm the patient and I know how I feel, where the pain is, what drugs do and don't work, whatever the dr says is right and I'm always wrong.

Y'know, I'm genuinley worried that one day I'll actually be ill. As in, really ill. And no one will step up the game. They'll be clueless as usual, or give me the drugs that I know don't work. Or they'll make a fucking idiotic response like the following over the last few years (and believe me, there's more, but I can't remember any others as A, my memory is shit, and B, I'm tired)

Me: 'I feel like I can't breathe'
Dr: 'That's b/c you have CF'

Me: (On being told that one sugar level is the tiniest bit high) I don't want diabetes
Dr: 'But you can get free prescriptions'

-Dr walks in-
Me: 'I feel like crap, I have no energy, I've been having hemos, my weights gone down, my sats are 92% and my Lf just dropped 25%'
Dr: 'Lets hope the IVs work then -walks out-' (that's literally all he said)

Upon phoning the dr to say how crappy I was feeling back in the day when I tried out mero, and the fact that I felt like I had the flu and slept almost 2 days (and I never do that) he replied 'That's the IVs at work. You'll be fine' (Fast forward at clinic about 4 weeks later and I'm back on IVs, WAY sooner than I ever used to be, and waving goodbye to my old 'IVs every 3 month' routine b/c I start needing them every 4-8 weeks)

(when I was in hospital in March)
Me: 'So what's wrong with me? Why am I in so much pain?'
Dr: 'I don't have a clue' (and this was WITH all the fucking test results over the last day right in front of him!!)

Knob end. 

P.s. There are other good drs in the hospital. I'm trying to switch. But whenever I try I get told that this dr is 'a good dr', despite the fact that I'm so sick and tired of the bullshit way he considers as treating me. One day, I'm going to make someone fucking listen to me.

Sunday, 22 May 2011

Yet more driving adventures

Taking inspiration from Clarey and her blog post on car adventures, I've decided to make my own. And now I'm slightly worried considering the fact that I've only had my car almost a month now...

1) I've parked so close to another car that my passenger had to climb out of the drivers side as there wasn't enough room to open the door. In fairness I was parked fine in my bay, it was the person next to me who was parked basically on/over the lines...

2) Parking in a suitable not-too-far and not-too-close distance from the petrol pump to not look like, for lack of better words, a knob, is really difficult

3) Failing so badly on a parallel parking attempt that the front of my car was right up against the front of the car infront of me (so, number plate to number plate) I'd gone slow so there was no scratches or marks but GOD that was embarrassing. Especially the people who decided to stop and laugh.

4) Ticket machines. I've only had to try this once so far, at the hospital, but I parked so far away I was literally leaning (head, shoulders, entire torso) out of my window to reach the button, then had to scramble back in to make sure I got through the barrier

5) It's worth remembering that it helps to take off the handbrake when you want to move

6) I fail on so many levels at opening my petrol cap. It's got to be unlocked turning it one way, and then you turn it the other way, and I can never remember which way is the right way

7) I'm not the best parker... basically I'm still in the lines, just a little bit wonky

Bare in mind I haven't passed my test yet. So there's still hope for me yet...

Wednesday, 18 May 2011

B/c having a quiet, unembarrassing life, is overrated.

I've signed up for a Level 1 sign language course. This is big to me - for years I've refused to learn as I'd thought it was a way of maybe accepting the fact that I'm basically deaf. I hate it and fight with it every day, so learning something that essentially says to a lot of people 'I'm deaf' didn't appeal to me, even though on another level I knew I had to learn as it's a handy skill, not just deaf people know how to sign, and it'll make things like lectures easy as I can follow the signer rather than sit there clueless with no idea what is going on.

The course starts the week I finish my first year of the photography degree (and obviously, fuck-me-I-can't-believe-I-got-through-that). It's a fast track course so will be about 20 hours a week, and only takes 3 weeks. Theres assessments after each module to show you've learnt the stuff. The only thing I'm wondering is if I'll actually remember it - I have THE worst memory. I can't remember what I said 5 minutes ago. So even if I do actually manage to get through the module assessments, I have no idea if I'll remember it during the 3 months I have off until 2nd year starts. I don't know anyone outside of college to sign to.

Also... I have a habit of monumentally fucking up my first day. Your witness...

First tutorial in the beginning of year 9, starting a new high school. I'd been sitting in the classroom with my friend for a good 30 minutes, the teacher went through the register. And my name wasn't called out. I was in the wrong classroom. Always a way to hold onto your 13year old dignity, walk out of one packed classroom, and walk into another full class, half an hour late.

Throughout middle school/high school/6th form, I've done the whole walking into the wrong classroom, and walking into the correct class, very late, tonnes of times over the years. But it's still slightly more embarrassing when its the very first day and you're walking into a class full of people you don't even know yet.

The first day of this foundation degree I'm currently on, I walked in 10 minutes late. I'd been standing in the foyer with all the other people in my class, but I had no idea who they were, and I didn't hear the tutor come down the corridor and call for the new photography FdA students. So I stood about until I recognised someone and they took me to the right room. That one wasn't too bad. I definitely wasn't the very last person to walk in late, at least.

The winner for this though, was my Saturday course. Not only did I walk into the class, over an hour late, I was also pretty drenched from the downpour which decided to accompany me on my walk to the college after my monumental fuck up of the buses, fairly exhausted, and basically resembled a drowned rat. After walking into the completely packed classroom, I managed to locate one empty chair all the way on the other side of the class, at the front. Sat down, and started to listen to the tutor.

Then I realised I didn't even have a pen. Cos I'm a fucking winner like that.

So yeah, to say that I'm slightly interested, and also apprehensive on how this new course is going to go, is maybe a slight understatement.

Monday, 16 May 2011

Happy birthday Gem!

Woo, twenteen! Hope you have a brilliant day :) xx

So, I was *meant* to be having some sort of reflux test today. I got to the endoscopy unit, and proceeded to be incredibly unhelpful once called into the room. I realised what it entailed (tube down my nose, no thanks...) and didn't want it done, and was pulling every excuse possible - the fact that I feel like crap, have a cold, and have been coughing so much I'm bound to throw the stupid tube up at some point in the next 24 hours meaning it would be slightly pointless. Didn't work and eventually I realised I wasn't getting out of there easily. I felt it was kind of pointless though - its a test for reflux, I'm already on meds for reflux which I had to stop for 2 weeks for the test, and then I'd go back into the meds anyway. The bloke kept on about how it can determine if I'm getting the correct dosage but I don't exactly have a massive reflux problem anyway so I think the drugs I'm on now are doing the job.

They kept stressing how it was a tiny tube, I've had NG tubes before but this would apparently be a hell of a lot smaller. Was it fuck! The actual tube was small, I'll admit. They left out the part that to start with they'd be using a great big huge tube that was, well, massive. The dr tried to put it down my nose. I say tried, cos it hurt like hell and I backed off and after listening to him repeatedly tell me that if I change my mind I can go back (not likely if I'm honest) I left. But, as I couldn't eat anything before the test (Aka, I was a grumpy bitch to put it lightly!) I got breakfast from the cafe and my dad phoned clinic which was just downstairs, basically saying that I feel like crap and we need to do something - I have the most impressive disgusting cough, and I'm getting no sleep for it and have basically little to no energy so it's getting so ridiculous. This is what happens when I get one stupid little cold!

They phoned back and I've got to go to clinic at 2pm, which to me seems a bit pointless as I'm at hospital next week on wednesday anyway. But I can't wait this long with this sort of cough. Whatever they suggest, I won't be taking cipro - I had the oh-so-fun argument with my dad last night when he suggested that I take cipro for the week and then get IVs at clinic next week. Just b/c cipro has a habit of temporarily increasing my lung function whilst I'm on the drug, everyone thinks it works. Despite the fact that I feel like shit on it, and that my lung function goes back to what it was, if not lower.

*Le sigh*

Wednesday, 11 May 2011

Deactivation & driving adventures.

I deactivated my facebook the other night. Not entirely sure why I did. In honesty it's like I've just cut myself off from a hell of a lot of communication, especially with other CFs as that's basically the main way (bar texts) that I talk to people, seeing as I don't go on the forums anymore and I'm inconvenient and can't talk on the phone. Oh well. The people who give a shit have my number so I can still talk to them :) Dunno how long it'll last for, probably only a few days tbh! I'll admit I still go and look at Loz's page, like, daily.

I'm not sure how I'm doing at the moment. I think I'm starting to go down the 'I need IVs' hill again. Yay. It's always gradual so it can be hard to tell. But the more and more frequent hemos are a nice smack in the face which remind you that *maybe* the lunguars are actually being diligent little drug addicts and want the hardcore stuff again. The taxi driver dropped me off at the lower building at college this morning. I couldn't be arsed to say I go the building at the top and just decided that it's a 2 minute walk up the hill so I'll be fine.

I wasn't.

I spent the two hours of my lecture just suffering for it. Massive headache, clearly low sats, even my fingernails were a bit blue which was just wonderful... that is the last time I think of that hill as a 'quick 2 minute walk'. I'm not sure when I'm back at hospital, I think it's in a couple of weeks. But on the 16th I have a reflux test so that'll look glamorous. I go back the next tuesday to have the silly tube taken back out and then I just cabbage about until college at 1pm that afternoon. I've agreed with my dad that I'll drive there as my tuesday afternoon lessons in the digital room are short (and a bit boring) so he won't have to wait long till I can drive back home. Can't wait until I can drive on my own and don't have to annoy people by making them wait about doing nothing!

I have actually already had an erm... 'encounter' with someone whilst driving. I was in the Ikea car park, and a bloke completely ignored my (bright red) car, and stepped out in the middle of the road forcing me to brake. I parked in a disabled bay (which tbh probably pissed him off more even though he was parked in a bay too b/c he was with someone who uses a badge too) and when I got out he came over and started yelling at me that I shouldn't have stopped in the middle of the road like that. Apparently he would rather I knock him over!! The fact that he got into an instructors car (I'm guessing he's an instructor unless that little old dear is the instructor, which I doubt) and that I have L plates on my car means he really should take that stick out of his arse and cut me some slack.

He should also invest in some glasses. Wouldn't go amiss.

I've shrugged this off and don't care about the bloke. I am wondering how long till I start getting people bitch at me cos I get out of the car with no wheelchair/visible disability in sight. Old people stare a lot. Clearly they're jealous. Just like when you leave the pharmacy with 4 bags stuffed with drugs.

Here's a picture of my car :D

Friday, 6 May 2011

The list

Looking at my list, I've realised that a lot of things on it aren't that difficult to achieve, they're just the things you never bother to get round to doing.

Take yesterday for example : I went to Nandos.

Going to nandos was on my list. Mainly b/c I've heard so many people rave about it and I've never been before. Its not the most difficult thing to go there and order some food, I live near a few of them. But I'd just never gotten round to it. I went for lunch yesterday and I have no idea why I've never been before. They're so kind in there, and I'll be honest, it's not very often you get a restaurant with such nice staff. We said we'd never been before so they gave us a 20% discount which was unexpected coolness :) I'll definitely be going back. The fit waiter was just an added bonus on top of realllllly nice food!

Back to the list... I've decided to add a few more things onto it. Things that are more challenging and will actually involve effort, not just things you can just tick off day to day cos that gets boring. So this'll make life more interesting.

Finally... I'm not sure how many of you know Bree, but if you read her blog you'll know it's been quiet for a while. She doesn't have CF, but did have a double lung transplant in August 2009, due to having bronchiectasis. She was doing great, and then in Jan/Feb she started getting ill. It progressed into her eventually loosing the majority of her sight and now shes legally blind. I read an update on her facebook page the other day where it said shes in ICU, being fed through NG and pretty unresponsive. Her body is attacking itself but they're not sure why. They think she can hear everything they say and can tell when shes distressed but that's about it. They've got some of the best people from north America working on her I've heard. But I'm not gonna lie; I'm scared. I'd talk with her a lot on msn, and haven't been able to talk with her since she got sick, she was online less and less as her eyesight got worse. I miss her. And she NEEDS to get better. A 25yr old shouldn't have to be going through this. All I can do is hope and send mendy vibes that she'll get better. She has to. No other option.

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...