Thursday, 31 March 2011

The pain saga, continued.

Let's see... the condensed but informative version of my last week:

Go into hospital on Friday night after being in pain for a few days and actually sick to the back teeth of it. Get admitted, have bloods taken and Xray, etc. And those fun little things like MRSA swabs.. :|. Have port accessed and start IVs. Next day Doc comes in and says Xray and bloods 'didn't really show anything', and as it was the weekend I expected things to be a bit slow. On Monday I get a kidney scan to check out anything there, as that's specifically whereabouts the pain was. They were mainly looking for kidney stones or something like that. Bloke who was waiting for his own Xray at the time asks me if I smoke cos of my cough(!) Anyway, scan shows nothing of significance, and Doc comes in and says it must be a muscle. But I'm still not going home and still on IVs. Getting paracetamol 4 times a day which is doing jack shit as per. Physio comes in and gives me some funky little stretches to do, cos if it's a muscle, then this will help. She also gets them to bump up my pain relief to codeine and ibuprofen. Woo. This helps mostly and I can walk a bit further now compared to when I needed a wheelchair just to get out my room. Get discharged today (Thursday) and read the discharge letter, find out I actually had a chest infection (ta..) and that's probably why they kept me in on IVs, rather than just let me trot off home with a few painkillers to deal with my ever pathetic 'pulled muscle'.

Enjoy the whine?

Haha. Oh well. I'm free now, I can drink endless tea again, not that I wasn't whilst I was in, but that stuff tastes like gnats piss, so I mostly lived in Costa when I could, as there's two Costas in this hospital. All in all, it could have been worse. I'm not the worst off health wise, and I had tv, bought a dongle to keep me sane, and got on with all the nurses and HCAs. Is it mandatory for the guy HCAs to act a little bit gay? I swear one of them flounced out of my room after asking me what I wanted for breakfast one morning. I took a few photos mostly on my webcam out of boredom, and took photos of every culinary delight of the NHS kitchen. Plus I had one late night, very slow, very painful wander, where I got lost but took a few photos on the little camera I'd left in my bag.

I'm sure those nurses are going to miss me with a passion. Especially me swearing at 1am cos I'd hit my foot and knee off the table for about the 3rd time going.

Majorly happy to be out though. Besides feeling like a bit of a burden to the parentals, as they visited me every day and the car park is ridiculously priced, and its just a bit stressful etc, and when they weren't visiting me I was left on my own (throughout choice, I don't mind, but when you're stuck in hospital you don't have much of a choice and it sucksss) and then you're just left with your thoughts too much. I can be my own worst enemy and got upset a few times. It's mad, I never cry, I hate crying and being a snivelling wreck, but the past 2 months have been pretty, shit, for lack of other word, and it's sort of turned me into a human tap! Plus my cousin reached out to a friend almost 2 weeks ago, saying that I could do with a friendly face and need someone to talk to, I haven't spoken to him for a couple of months and we used to be really close so I miss that. He told her he'd talk to me but never did so that just feels brilliant..

Ha, anyway. Photos...

Mostly abusing the webcam out of boredom

Nebbing off O2 cos I'm silly enough to forget my eFlow



 <3



 Lots of painkillers to go home with

 My ever sexy view out of my window..
 Okay I reallllllly didn't get this; I was on the 6th floor, and my window opened far enough to climb out fairly easily. And yet they lock up my meds in the little safe. What am I going to do? OD on vits?

 Night time wanderings with costa :D (and enough painkillers to actually let me walk)

 The cafe from the 6th floor view

 Empty spooky corridors

 Stupid wrist band, as per

 'Nother view from one of the higher floors (the multicoloured thing is a cinema...)

Pretty bored just waiting to go home. Apparently Gem likes my socks

Much love for everyone who sent me texts or messaged me and kept me a bit on the sane side whilst in prison ;) Lots of love for Gem who needs it right now with her argumentative lungs (and yet never stopped texting me all week, you legend!) and everyone else (there's a few of you!) who's been having tx talks/assessments/becoming active on the list :) xx

Sunday, 27 March 2011

Temporary freedom.

I've been admitted. Brilliant(!)

Maybe I should start from the beginning:

A few days ago there was pain in my back and side (I guessed kidney area but I'm not sure it's actually kidneys?), I have no idea what it is, or what's causing it, but I know it bloody hurts. It's more of a horrible ache all the time but when I walk it gets painful to the point of not being able to walk any further, so I've been wheelchaired around places with people's wonderfully bad steering as entertainment and also making me fear for my life, even more than when confronted with the hospital food. I also put the fear into tesco when pushing myself round the place and crashing into a woman's ankle within 2 minutes of getting through the door.

I've escaped for a few hours and I'm at home at the moment. I don't have internet in hospital as I don't have a dongle, and I'm limited to checking facebook now and again through my phone. The room itself is nice, I'll admit. Last time I was on a bay for most of the time, then a room. And I had those shitty patient-line TVs, and the clock stopped halfway through the night. Now they've got a new CF unit which is basically an extra corridor down the side of the ward with a few rooms in. Each room has it's own bathroom, flatscreen with freeview, and a fridge, as well as the obvious bed, table-thing and bedside storage thing. I say 'thing' a lot as I don't know the actual word.. haha. But yeah, it could be worse. Freeview has made the stay bareable as I can put subtitles on and watch stuff I normally would, which is saving me from insanity.

The night I was admitted (Friday, after just getting sick of the pain and wanting to find out what the hell it is) they took blood, gave me an xray and started me on IVs. Not entirely sure what the IVs are accomplishing to be honest. And I'm not leaving on them cos in all honesty I don't desperately need them. I'm on colistin and Tazocin again so colo is making me feel properly stoned as per. I've seen my dr once and I don't think he knows what it is either. He didn't say anything about my xray or blood results (if he even had them? I'm not sure how the hospital works over the weekend) and they've been giving me 2 paracetamol 4 times a day. Not helping at all, won't shift it in the slightest. In fact I was taking co-codamol at home and that was doing nothing too. It's really confusing me! Hopefully they'll let me go home properly tomorrow. I'm not getting any further whilst in compared to at home. If anything, the pain has just increased.

Quite liking it at home even though its just for a few hours. Decent food, company and I can check my email properly! 106 emails after 3 days. Isn't that a *little* excessive?

Oh and just for the hell of it, if anyone's seen Junior Doctors, whilst being put through the terrifying journey to the cafe in my wheelchair, I passed the blonde Dr who was working in the A&E bit in the programme, I think she's called Susie? I found it quite funny! I've not seen the bloke who was actually working on my ward from time to time (Adam, I think) so maybe they've changed which departments they work in, or he's not been on duty. Either way, he wasn't my favourite of the show!

Sunday, 20 March 2011

A little bit of everything.

Reading over my last few blogs I've realised I've missed out a fair amount! I'm trying not to write too many long rambly posts as they bore you off your collective arses, but I tend to have a lot to say in one go! I've been called a chatterbox far too many times in my life.

Lets see...

I was thinking over the past year how so much as changed. As in, personally, for me. Physically, I've gotten two tattoos, had my ears pierced 3 times and had a lottttt of my hair chopped off (and you either get people who say they love it or people who see an old photo of my almost waist length curly hair and they go "WOW, why did you cut it off?!") Mentally... I have no clue but I don't tend to go into those territories.



A fair difference, at least to me. I got my ear pierced on Friday, when I went out with my sister. It wasn't as straightforward as it was meant to be...
  • I abruptly decided I wanted the 3rd hole on my left ear pierced as we passed Claire's, and they do ear piercing. So we went in...
  • They asked me for ID, obviously. Cos I look 12. My sister actually FORGOT my age and said I was 18, till I pulled out my provisional [sigh] licence and it shows I'm clearly 19, much to everyone else's, and my own, disbelief
  • They asked if I was on any medication. Usually I'd say no. I said no when I got my tattoos as I wanted them done and I didn't want to risk it. And frankly, the only dangerous thing really would be blood thinners, which I'm not on
  • My sister said I WAS on medication. Lovely, thank you. So they said they couldn't pierce my ear without a drs note.
  • Fuck
  • So we left, and just went to the other Claire's around the corner, hahaha
  • They asked the same questions and I said I wasn't on any meds at all (I can dream...)
  • Unfortunately the first Claire's phoned the second one to say that two girls had been in and were refused as they didn't have a drs note and one was on medication
  • So my sister said it was her, not me :D
  • And the result was this:
 

(The third one) I did actually want the 4th done too, but that's cartilage and you have to go to a proper piercing studio that uses needles. Claire's uses guns.
[I got the second ones done in August, on both sides and I've had the first done since I was 6]

And I'm aware that you'd probably not be interested in that story but I felt like telling it.

On Monday I had my driving test. And I failed. I was so angry and pissed off. I don't care that it was just the first attempt, I don't care that I can retake. It probably sounds silly, but I wanted to prove that I can do this one thing. Everyone treats me like a kid, which is annoying enough. But I'm crap at tests and exams (ahem, three attempts for the theory...) so I wanted to do this, not just to prove I'm not a stupid kid, but also for myself, to prove that I can do it. The reason I failed was cos my examiner hated me and made me do parallel parking, on a hill. My instructor has never had me practice on a hill and in the stress of the test itself I forgot about keeping my foot on the brake whilst reversing and went a bit fast. Not too fast but enough to hit the kerb before I could stop it. Instant fail. And I hate that as once you've passed you don't give a fuck about hitting the kerb or not.

Over all, I got 5 minors. Most of those came after I'd done my manoeuvre so I didn't care really. I knew I'd made those mistakes and just wanted out of the car. The examiner was a bastard anyway. We explained that I can't hear well, and that rather than speaking he'd have to point to which direction I'm going. Which he didn't seem to grasp! Because of that, I missed right turn within 2 minutes of my test and he said to turn left instead, do a 3 point turn (which went perfect of course, but didn't count apparently >.<) and get back to where I should have been. He mumbled loads too. Oh and here's the kicker, which distracted me throughout the entire test itself:

THERE WAS A FUCKING CHICKEN IN THE ROAD!!

I'm not even kidding. It was in the other lane, about 50 feet from the main street, flapping for all it was worth. SO many chicken jokes went through my head, but I fought not to burst out laughing. I didn't think it'd help! But yeah. That basically distracted me a LOT. Stupid poultry.

At clinic the other week, Monday before last I think..? My memory is so screwed. It was my annual review, so blood results, longggg chat with the dietitian, xray, etc. My xray is almost identical to last years which is great, as it means that theres been no extra major scarring or anything. It's a mess enough anyway so I'd rather do without more. I did notice a few more marks when last years and this year's xray were next to each other but basically no hugely noticeable changes. My IgE level has finally gone down to 500 ish after being up at 2000+ two years ago. I have no clue what my CRP was as my dr didn't show me that despite me asking. Essentially, nothing was notable according to him, aside from one sugar level which was a tad high. I told him to get lost if he thought I was going diabetic. Add this to sore joints which I've never had before and already being on meds for my liver, I'm not keen on those sort of things! CF itself is enough. CF related diabetes, CF related liver disease and CF related arthritis (which I've been told to keep on eye on my joints for), basically, takes the complete and utter piss. No thank you.

I went to see the Script LIVE last night, and pretty much, it was amazing. They're my favourite band, ever. When everyone was screaming and raving out, they looked so overcome with the support, and that itself was really touching as they love their fans :) I got a few photos, they're not brilliant but it shows I was there, and saw them live, so that's good enough for me! Thank you Ayesha for the tickets!!! (She would have come with me but couldn't as she's now 1 month (ish) post tx! So crowds like that were a serious no for a little bit longer. I called her throughout the entire concert though and she got to hear her favourite song.)

And now I'm packing for Sheffield. The second to last project of my first year of my course (Excuse me whilst I fall over at the thought that I've almost gotten through year one!) is a HDR Panorama. Essentially, it should look cool as fuck when it's done. I'm staying with my friend for a few days, and I'll try and find some places that look good. It'll be an urban-y style panorama, I'm aware that Sheffield isn't the most glamourous place in the country. But I can get there by train and I've got somewhere to stay, so it's done. We've also gotten the brief for the final project, and it's a bit annoying, but I've got 2 months for it.

FdA photography, bring. it. on.

Sunday, 13 March 2011

Maybe one day.

[Slightly behind on the times here as the blog has been a little bit neglected but I still wanted to write about it]

I've always been a bit pessimistic where a cure for CF has been concerned. I know a lot of people hope and get excited whenever a new drug comes along but frankly I don't want to waste my energy or have false hope on something that might not even work. I don't go about searching for articles about potential cures and drugs etc, mainly as they're just really really long reports or boring articles that can't hold my attention, and I don't have have a degree in biology and all that fun stuff that would give me even half of the knowledge to understand half the stuff they say, although I do understand more than the average person seeing as I'm surrounded by doctors, hospital staff, technical terms, drug names, etc all the time. It wasn't that long ago when I had a conversation to Gem about this sort of thing; one of the main reasons why Cfs reach out to other Cfs is to be able to talk about medical stuff casually as it's a huge part of your day, and not have to stop and explain what every single thing means.

My whole point to this was, that there is actually a drug in the pipeline, called VX770, which may well actually progress to something good for once! Not just a drug that treats the odd infection or symptoms and so on, but one that digs down to the base of the problem, fixing the CFTR gene and all it's issues it seems to have with us trying to live a normal life. It's explained best Here in a post on Gemma's blog (Her daughter Sophie has CF). It's a pretty good explanation that explains everything really well without having to crack out the medical dictionary!

But like Gemma said, whilst this is a major positive step forward, I agree with what she says when she doubts that we'll see a proper cure in our life time. But all the same, it'll be cool if they do get this current drug all the way through the trails and available to Cfs everywhere, and even cooler if they got the one targeting the DF508 mutation being just as successful too. Not that I'm biased. Well, I am, cos my mutations are DDF508 (Common as hell :D) but it would also mean good news for a hell of a lot of other Cfs b/c of how common the DF508 mutation is, compared to the G551D mutation which is only about 4% of the Cf population.

I'm not holding my breath though (despite the fact that I can't anyway >.<) But I'm hoping to keep myself well enough, long enough for a drug like that to come about, which could possibly hold off the big scary decisions that I have to make one day, just a bit longer.


P.s. A beautifully written entry was posted on Lauren's blog, by her mum. It was honestly the hardest thing I've ever read as it made things a tidgy bit more real, and it means that the past 3 1/2 weeks really did happen. I will find acceptance one day, I just have no idea when that'll be, as I still fall apart as much as I ever did when I found out the night she passed away. Her mum mentioned how Loz was worried about being forgotten (and it was on her bucket list to 'Be remembered'). She should never have worried about that in the slightest b/c I can promise her than anyone who knew her will remember the impression she made on them.

Friday, 4 March 2011

Photography is dangerous.

Considering I'm really, really clumsy, you can imagine it's a brilliant combination.
  • I have walked backwards into (very hot) studio lights and burnt my back and arms
  • I've tripped over said studio lights and leads more often than strictly necessary
  • I've hit my head off cameras. In all honesty I'm not entirely sure how even I manage that
  • I generally drop my film in the darkroom. Seeing as I've usually opened the film from it's casing at this point, I'm not allowed to switch the light back on and there's no red light in the processing rooms, so I spend a good 10 minutes, sitting on the floor, trying to find said film rolling across the tiny room. In the pitch black darkness
  • This usually results in me hitting my head off one of the baths with the chemicals in them
  • And walking into the door
  • And due to the darkness I've possibly put my film in the wrong baths and resulted in a blank film. My tutor enjoyed proving me wrong when I tried to blame it on him loading the film wrong in the first place. No such luck...
  • Hitting my head off various over head things in the studio
  • Dropping developed film on the floor of the dimly lit darkroom. This place results in many a trod on foot, hitting your head off the enlarger, and lots of paper cuts
  • On location shoots are dangerous as hell - I went to an indoor skate park and almost got flattened countless times... it's not really my choice of ways to go
  • General heavy equipment that gets dropped on various feet and heads
  • Static shocks when the plugs don't agree with you... urgh
  • When your food shoot goes wrong, and you have no choice but to eat the melting chocolate gateau and just use another random cake for the shoot. Yes, that was a very difficult day..(!)
  • Fingers getting caught in various scanners. 
  • And weird props people tend to use in their own shoots in the other spaces in the studio, including a stuffed life sized sheep which near gave me a heart attack (and giggles from my friends..)
Clearly I've chosen the right degree. And as I've still got another year and a half to go, I'm bound to have many a ridiculous story to go along with these injuries once I've finished the course.

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...