Monday, 29 December 2008

Christmas cheer.

Had a great Xmas, favourite present was a digital camera that I totally didn't expect (A 'bridging camera' apparently, not 'look how small this thing is, la de da).

Anyhoo, I went to the Dr today for a check up, and typically, whilst I'm there, my chest doesn't rattle of any sort, so I can't really explain to the Doc what its like, and he said today 'Well, I think you're pretty healthy for now' which, yes, is a great thing to hear, but I certainly don't think it while I'm rattling away. Which incidentally I have done since I left the chest clinic. Plus, there's that annoying supposed-to-be-a-stomach-muscle thing, which also disappeared as the hospital appeared into view. Bugger.

I did get some other good news that I'd gained weight. Yey! So far, for the past two visits I've gained a kilo on each one, which is good for me, considering the whole crap appetite, and the fact that CFers supposedly burn calories twice as fast and stuff like that. As I was saying, next time, if I've gained weight again (trust me, over the next 5 weeks, you'll find me covered in chocolate wrappers) I'll have this irritating PEG out, which is a gastrostomy tube that, instead of going through my nose and down my throat (an NG), goes directly into my stomach, which I used to be fed through overnight. That feed stuff was disgusting. What is weird is that when they do (and they will) take out my PEG, it leaves a small scar, obviously, but as its round and about 3-4 inches away from my actual belly button, it'll look like a second belly button. That, frankly, sounds weird to me. It'll keep in match with the whacking great scar I've already got across my stomach though (When I was born, I had the menocum illeus surgery. Lovely. That scar goes all the way across my stomach, and freaks the hell out of my friends when I show them. Teehee.)

I do have one rant though. On Tuesday I had to go to the Freeman hospital where they have the Ear, nose and throat dept, so I could get my 6-monthly ear check up to make sure I haven't gone more deaf (Is that even possible anymore?!), and we find out that the Dr is there, she just isn't going to see me. Uh, why? We were meant to see her about a month ago but the hospital phoned up to say that the Dr wasn't going to be in. So we turn up for the appointment after driving the obligatory 30-40 minutes from home to the hospital, through some of the busiest routes through Newcastle, and when we finally get there, and wait the typical what feels like 3 hours in the waiting room, I eventually get called, and then told that the Dr won't be seeing me. Well, I say I was told but the truth was that the nurse only spoke to my dad. I may be mostly deaf, but I'm the patient and don't appreciate it when people refuse to speak to me because I'm deaf. And, is there a reason that prevented them from picking up the phone and dialling 6 numbers? That really pissed me off, and it was an entire morning wasted when I could have been doing anything else.

The hilarious thing, is that all over the hospital are posters saying 'so and so many patients didn't turn up for their appointment last month' and yet on Tuesday, there was about 10 or so patients, possibly more, that travelled all the way to the hospital, waited patiently, and then was told that the Dr wouldn't see us. Then, of course had to spend 10 minutes in the line for reception to get a new appointment.

Wednesday, 17 December 2008

Quel est le point!?

I never understand why, after I've had an impressive coughing fit, people, namely my friends or nosey as hell teachers, ask if I'm OK, or if I need a drink.

First off, half the time the coughing fit is because the water goes down the wrong way (constantly!!) but when I'm really coughing, everyone stares at me like I'm a complete loon, but A) its not my fault, and B) if I could stop it, I honestly, honestly would. But every time, someone will ask 'Are you OK?', and I'm sick of giving the exasperated response of 'Yeah' as I can't be bothered to go into it and they know perfectly well, that its a ridiculous question anyway.

At the moment I'm attempting revision (And failing!!) as I've got A2 level exams in January that I need to pass so that I can get high enough grades to get into college. That is, if they ever send me an offer. We have to send our forms through a site called UCAS now, as its all done there and you can apply for multiple courses/colleges. UCAS still hasn't sent my form through yet, even though I sent it off more than a week ago. I need to know! I can't stand the suspense! The exams I'm taking are for Health and Social Care, and as Art doesn't have any written exams, I usually end up with about 5 less exams and everyone hates me while tearing their hair out with revision for another two or three different subjects (H+SC is a double, it counts as two subjects).

So, college. I'm applying to Newcastle College, which has its own art building, and I want to do photography. It’s the only thing I have EVER considered as a job in my life. And that was only a year ago or so. It’s so weird, but if we'd never been given the offer at a place called Venture Photography for that photo shoot and photos, I probably never would have thought of photography. But I've come to realise I love it.

The handy thing about applying to Newcastle is that it's only a 30 minute drive from my home, so I can live at home and not have to pay an extra 6 grand a year to live on campus. Plus, Newcastle is where I go to hospital, as it’s got its own chest clinic with CF nurses and Doctors. I guess I was lucky to automatically be living relatively near a CF hospital before I was even born.

Friday, 12 December 2008

Biting your tongue.

I hate CF. It just seems to get worse. The past couple of weeks, my chest has been rattling. Yes, rattling which sounds like a cross between Darth Vader and a rattlesnake. Its irritating as my chest rattles inside too. I'm worried with each rattle it could be damaging my lungs just a bit more. Plus, rattling is usually a sign of a chest infection. Or rather a new one. Which shouldn't be there, as I've just had a two week course of IVs which finished yesterday (Freedom!) which means that I should be better. Yes, I'm coughing just a tad less, but its not as horrendous as it is when its bad. Unfortunately I had a cold for the majority of my IVs, which basically made them almost useless.

With the IVs came a few interesting side effects. I never used to get side effects from my IVs, but I seem to be getting them now for two reasons: A, the dose has been upped up, and B, one of the antibiotics are still relatively new to me; Colistin. (In a way; I'd had it before in a nebuliser, but in IVs, its more frequent and its a lot stronger.)

So, these 'interesting' side effects included coming in the hilarious form of drunk walking. And no, I'm not joking. Ive heard some weird side effects in my time, but when the Doc first mentioned a common side effect as drunk walking, I thought he was just joking. But no. I had minimal control over my legs in a way. Its sort of like when you stand up and get a head rush, and you stumble. Only it continued into all my walking so I'd end up walking in a diagonal line when I was trying to walk in a straight line. Plus the inevitable walking into walls which some of my friends found hilarious. This side effect was only there for the first few days, but last time I had IVs, which was the first time I'd had colistin as an IV antibiotic, I was a complete mess the entire fortnight. I also had a weird headache for a week or so - it felt like my head was being squashed from all angles. Plus a tingly mouth and tongue (which, by the by, is not a pleasant sensation), and a lot of nosebleeds (I had no idea why till my mum found in her medical drug book that it was from an increase of ceftazadime).

Basically, it wasn't fun.

Wednesday, 3 December 2008

Karma has a warped view of... karma.

If people knew me, they'd probably not laugh at me when they notice I didn't hear something, for example, when someone calls for me and I don't notice. If they knew me, they'd know full well that if they laugh and I notice, I'm very tempted to go over to the arsewipe(s) and punch them there and then right in the schnoz. But, unfortunately, I give off the impression of a (slightly grumpy) small, blonde kid, who is clearly younger than she'd like to appear - which is good when you're older, but not quite so great when you're 17. Also, as I don't exactly go parading around in my karate suit, they have no idea I was a blue belt before I jacked it in. (Long story, involving some sadistic karate teacher who would only seem to let the guys go to grading. Basically, if I was a guy, I would have had my brown belt ages ago. So I had a perfectly good excuse for getting sick of the place).

Anyway, back to where I started. Last Thursday I went to the hospital for more IVs (Joy unbounded, I just can't stop coughing). I was sitting opposite some woman, who was with her two daughters, and after the youngest daughter (who had CF) went off to see the doctor or something, the nurse called for me, and when I didn't hear her, the two women started to snigger.

Now, I think this is incredibly rude, plus, seeing as their daughter has CF as well, she could also end up with her hearing affected by antibiotics. (Well, if karma gets a shift on, yeah). At hospital, its the last place you expect to be laughed at because of something medically wrong with you. At school I got used to it (And the threat of being punched in the gob soon took effect) but I really hate how people will laugh at things like that when they're not even my fault.

But basically, I thought it was time for another hearing rant. As far as I'm aware, people with CF who have had their hearing wrecked by antibiotics are at least in their 20-30's, or if they're my age, they're on constant antibiotics. Yes, I know I am too, but I mean constant as in never actually being off IVs. If you ever saw that channel 4 programme about a boy called Alex, who was 17 with CF, he mentions how he has a significant hearing loss because of the constant stream of IVs, as he basically never had them off, yet my hearing got wrecked when I was about 9 -10, when I was having IVs about every 3 months, minimum. Every time I come across some CF person who's hearing isn't wrecked, or at least not as bad as mine is (I haven't come across another CF person who wears hearing aids) I get a bit pissed off. Quite rightly too.

Speaking of karma, I mentioned in the first post that I made, that I haven't found a reason why I have CF, or a reason why I'm so ridiculously deaf (Ironically enough, my whole family has bloody marvellous hearing. Typical.) I really want to know why these things have happened to me as I tend to live by the phrase 'Everything happens for a reason' (Yet when I think about it, there's so many significant things that have happened without a proper reason). I thought, there must be a reason why I've got CF, but if its a karmic reason, what the frig could I have done as a foetus to deserve something as crap as CF?

Swearing on an ultrasound springs to mind...

World mental heath day

So today was World mental health day. It seems a shame that so many people only feel able to speak out about mental health on one day of the...