Monday, 28 December 2009
Anyways. 2009 has definitely been different. I've certainly had good points which I won't be forgetting - I started college, learnt a hell of a lot of awesome photography stuff, made friends that have literally changed my life, had no major LF drops (yay!) laughed till I've cried countless times, got a job, went to London... I could actually go on, but if I did the list would never end.
We've lost too many people this year, that's for sure. That's the only bad thing about this year - it's the first time I've really lost a friend with CF. That's the downside of being on the CF boards, but it's just something you have to deal with, as without the boards, you would never have known those people in the first place. And when those people did die, it made me take a double take over a few things, and hold on a hell of a lot tighter to what I've got.
Swimming failed this year. I swear I've barely gone at all, although I blamed things like the -20*C weather or having a cold. Good excuses in my book, but I kinda just want to avoid things like what happened the last time I went there - someone standing outside the cubicle I was in, having one of those loooooooooovely coughing fits (and I didn't hear her talking at all given I didn't have my HAs in) so god knows how long she was standing there asking what was up. I eventually saw her feet, opened the door and she was pretty much like 'You're coughing a lot you know.' I just wanted to say one thing to her, and if I had the energy to, I would have said it.
I'm guessing you already have a hint to what I wanted to say to her. Something along the lines of 'Piss off!!!!!!!!!!' would have gone down nicely. I'm still at a loss to why people like pointing it out. 'Yeah I know I sound bad, but now you've pointed it out, I'm even more aware of how crappy I sound. So thanks for that.' I might actually go as far as wearing a sign that says 'I know I'm coughing. If you're gonna point it out, kindly fuck off.'
Attitude is clearly getting a win here.
Short of getting nostalgic on everything that has happened this year, I've got nothing else to write. If the good times of 2009 are any indication, 2010 is going to be so much better.
At least 2009 goes out with a bang. Jessica Wales, who has been waiting 4 years for her double lung transplant finally got her call last night. With 9 false alarms, and the 10th one being the charm, everyone is incredibly happy for Jess getting her call in time - she's been on a very bumpy road these past few weeks/months, so getting her call now is clearly the best belated Christmas present and start to 2010 anyone could have.
Now... all we have to do is get all those other lovely people their calls. One of those people include the amazing Rachael Wakefield. Rachy has done brilliantly getting SO many people signed up on the organ donor register. But we'll always need more people. So if you're not signed up, make it your New Years resolution.
You could save someone's life. Hell, you could save up to seven people. Now that's finding the silver lining in something as terrible and scary as dying.
So why not?
Wednesday, 23 December 2009
My port works fine, which I found out when I went to the hospital on Monday (again with the wakings at stupid o'clock). It still kind of hurts, which is annoying, but the important thing is that it works as I've got IVs in a few weeks in Jan, and a broken port would sort of affect those plans.
I swear I was pretty freaked out all weekend cause had no idea what it was, whether it was the port or just me being my weird self (or possibly caused by yet another injury), and I was pretty scared that it was this port packing up for good. I mean, I've already had two other ports so needing a 4th one already would have pissed me off a bit. I was freaked that if this port buggered up, I'd have to go through the whole thing that happened last time I had a port op - having crap sats for days afterwards and spending more time than I bargained for jacked up on oxygen. It was definitely my most difficult recovery that I remember, although as that was almost 2 years ago, anything could go different next time.
Plus, there's basically zero chance of me letting them do a port under local. I'm such a wuss it's unbelievable. If anyone ever tries to give me an op of any kind under local, I'd be such a difficult patient they'd be begging someone to knock me out.
Trust me on that.
At least I can stop freaking out about it, and another port op is not something I have to think about right now. I got 5 years out of my old port, so I'd be pretty damn pleased if I got more out of this one.
That's it I guess! Hope everyone has a wonderful Christmas! (If anyone needs me, I'll be surrounded in the calorific goodness known as most xmas food. So, try not to need me.)
Sunday, 20 December 2009
I bet they're fucking getting tired of me having impromptu clinic appts, and if the nurses weren't incredibly nice, I'd hate going there.
It could be anything really. Maybe just the cold, maybe it's just being strange, or maybe its in major need of a flush to stop any clots that are plotting away. By the by, I had it flushed already this month, so it's not like I could have prevented this happening. What I really think might have caused this whole fuck up is b/c it's right next to my right shoulder. And as I'm right handed I usually automatically use my right hand to pick something up. And I'm stupid b/c a few times I've over stretched my shoulder to the point of going 'Argh, that hurt'.
Aaaaaaaaaaaaaanyway. Besides obsessing over my port like an insane person, not much has happened. The forum has been bombarded with some crude talking prick who basically really needs to learn the words 'That's too much information'. When people told him to at least clean up what he spoke about, he got pissy. Jenni and me decided a new spatula thread was in order to lighten the mood, and he got pissy at that too.
Dude, it's called a chill pill.
Basically, he got annoyed we were talking about utter rubbish (ahem, spatulas) just for a laugh. And actually said something along the lines of how he didn't want us to talk about stupid things like that on his forum. Oh yes, 'his forum'. B/c apparently it's his (It fucking isn't mate) and whilst he is allowed to talk utter bollocks, we aren't. So I've just decided to ignore every other thing he says. He insults people and finds it hilarious, and everyone else knows he's just being an immature 2 year old (With poorer spelling skills but a slightly wider vocabulary than you'd rather a 2 year old would have).
But on the other hand, it's provided plenty of entertainment for those boring days where you're stuck in the house b/c the only way to go outside and stay even slightly warm, is to resemble an Eskimo.
Oohh, I've added a link to my Flickr page on the sidebar ('Photos I've taken'), so if you ever get bored enough, you can go be all nosey at the pics I've taken. There's plenty of wintery ones in there (which in the process of taking, I practically froze, but I think they turned out ok).
Thursday, 17 December 2009
But then again, this was a few months ago, so I want completely different results (of the better kind, not the crappy kind, please). Y'know, if they ever tell me the results. If they don't I'll just have to steal my hospital folder. A task I've been working on for quite a while now.
At the moment my port is being a bit... odd. It feels like there's a sharp pain going through it. It goes away and comes back, and it's definitely there when I cough. It's odd and kinda verging on painful. My neck is uncomfortable too - where the tube for the port is. My mum actually said she'd take me to hospital if it gets worse, but I don't see what they could do about it. Part of me is worrying that it's my port trying to give up the ghost there and then, but it's not even 2 years old. (I'm not saying new ports can't kick it though. My first one lasted mere months before needing to be replaced). Obviously I worry like hell thinking that I'll need a new port - my last port op went ok, it was the recovery that was a bitch.
Not only that, but I find lines in my arm/wrist/hand sting like a mo-fo, which is also why ports are pretty much a god send. Oh well. I'll find out in Jan if my ports still clinging on or not (And it better fucking be, or I'll be having words).
Friday, 11 December 2009
I was fine on Monday morning but by the afternoon it started to hurt again, probably a mixture of being outside and those lovely coughing fits. But I ended up leaving work early b/c of it. My Mum phoned the dr and he said to bring me in as early as possible to clinic the next day. Which meant I was woken up at the ungodly hour of 7am. I think we should be able to follow a rule - if the moon is still visible when you wake up, you're allowed to sleep in. On the way to Newcastle the sun came up. That's how freaking early it was. All that happened to hospital was the basic tests (I lost weight dammit) and then seeing the dr who ordered me an Xray. After the Xray (Where both me and my Dad realised that we should turn off our mobiles b/c the Xray dept. is probably the last place you want your mobile phone on) we went back to clinic where my dr said there was nothing different on this Xray compared to my last one. Um, I was ill when I had the last Xray.
The weirdest thing about the impromptu clinic appt was my LF results. I was expecting the same numbers, if not lower, b/c I felt like hell. When the technician showed me the numbers I was pretty damn shocked. My dr did the clever turning the Litres into a percentage, and there was an 8% increase. In 6 days. And 8% is a fucking massive jump for less than a week. I don't even know what caused it. Cipro? One thing about my LF increase is that I feel guilty. I mean, on top of those pretty elated and greatful feelings that my lungs are finally being kicked into shape. When there's people with lower LF, or their LF is dropping, I feel bad that I'm doing better. I just keep hoping that everyone who isn't doing as well is just going through a blip and they'll get back to normal soon. With all the confusion, I said to my Dr: 'I feel like hell but my LF has just increased loads. I'm weird'. He said 'Yes you are.' Lovely.
Soooo I went home and then had to go get my arm assaulted by the swine flu jab. The nurse I saw was a tad annoying. She repeated the 'are you allergic to eggs' line about 3 times. When she was satisfied with my 'No' and going through my medical info on the computer, to be sure (I love it when they do that, they always look so shocked b/c I'm on so many meds), she stabbed my arm without warning. Now the being stabbed in the arm part doesn't bother me - I've had enough flu jabs (and not to mention use of my port) to not be bothered about it, but its the stuff inside the jab that hurts like a mo-fo. OW! I mean, holy christ on a cracker that fucking hurt! And then 5 seconds later I could feel my wrist stinging in the same way. And now I have a lovely red mark, there's a bump on my arm and in the place where the jab went, its all warm, like when you get a temperature. I have the fun of looking forward to that again in 3 weeks - the nurse said, alright, wrote on a note (I couldn't understand a damn word she said. It's like I'm surrounded by mumbling idiots) that I need the jab again in 3 weeks, b/c of the amount of meds that I take, it's possible the jab didn't work the first time round. So 30th dec is 'lets stab Megan's arm again' day, and that should be fun for New years(!)
On the bright side, at least I won't get swine flu. But potential drunken antics on New years suggests my arm won't forgive me in a hurry.
Saturday, 5 December 2009
But... I had to work this percentage out by looking at my old lung functions. But this works, in theory, b/c its based on your height and age, and I'm only looking at recent results. Anyway, I had to do it this way b/c trying to work it out via an online thing fucks everything up - none of my results from the past matched up with the results on the online thing, so I'm guessing that maybe its based on the LF of a healthy person (or so according to my Mum) so it probably won't give me the same results that my Dr gives me.
And if he was giving me wrong results, that's beyond messed up. So I'm sticking with saying I have 70% rather than the lower number that the online calculator tried to depress me with.
Whatever the number, it increased nonetheless. And I'm thoroughly convinced that it was down to swimming, and obviously laughing. A LOT. Maybe no one else believes that laughing so much you actually fall over can increase your lung function, but I do. I'm glad that I finally got some good news for this year, even if it's almost over - I'll obviously not forget the bad things, and especially not the people we've lost, and I can take the lessons I've learnt to make 2010 be nothing short of awesome.
I also got other good news - I got information about an interview for my college course. I didn't even get that far last year, so I'm really hoping the course I'm on (and have almost finished) will get me onto the commercial photographic practice course I originally wanted to do. I haven't gotten a secure date for the interview, but the email came before UCAS told me whether I've been accepted. I think, when you get an interview to determine whether you'll get on the course, its called a conditional offer. I'm probably wrong though.
The email said I need to show my work from the last two years or so, which means if I decide to make a portfolio of my work, printed out, that's a hell of a lot of printing. I've also got the work I've done for this course, and someone suggested taking in one of my art books b/c they wanted to see work such as sketches too, which that book is full of. Actually I have 6 art books full of that stuff (two years of 6th form art) but I don't want to drag them all in. For starters, they weigh a lot when you carry them together, or so I learnt when I left school carrying 3 in one go. And secondly, the tutor who'd interview me would probably hate me for that. So one portfolio, one art book from 6th form and one college course art book should be ok.
Oh, when I went to the hospital for my appt on Wednesday, I didn't see my usual Dr. I saw a younger Dr who works with my usual Dr... or something. And I sort of instantly hated him. He came in, and instead of sitting at the desk like everyone else does, he... uh, sort of crouched on the floor to be face level (ish) with me. Sort of like when you kneel down to talk to a 3 year old. The second thing he did, that made me want to kick him in the face, was mumble when he spoke. I told him to speak up b/c I'm deaf, and he spoke to me like I was a fucking foreigner.
I really hate that about people! You tell them you're deaf, and that they should speak up, and instead they speak to you like you don't even follow the same language. I swear, if he hadn't been holding my folder, he'd have been doing the exaggerated hand actions along with it, that help no one. He decided that I'll get IVs at my next appt in January. And I swear if I'm doing better (like I am this time compared to my previous appts) I'll be tempted to refuse IVs b/c they've done fuck all for me, all year. And I can't help but wonder if they'd be more effective if I had more of a break between IVs. Oh well.
RIP Ginger. I can't take any more deaths right now...
Wednesday, 2 December 2009
Yeah, really hardcore guys.
I'm sorry, but no. You're gonna be doing this your whole life, you might as well get used to it. And if you need to be knocked out every time you need a line to get IVs, well that's just going to make matters worse. When I was a kid they'd use the emla cream if I was getting a line or bloods, and that's it. And this is stuff starting from about age 6. And I'm talking about teens who need gas and air for a needle stuck in their hand.
Yeah, ok, so maybe it might make it a tad less traumatic for them, but if the older CFers could do it when they were younger, you shouldn't have to sugar coat it for the younger ones. But gas and air? I can't seem to get over that. I do once remember being in hospital when I was 11, and I was on the ward, actually on the ward b/c they kept shifting me about from cubicle to a different cubicle to being on the ward itself. Anyway, my point is, I was on the ward, minding my own, when this boy, about my age, was kicking up an unbelievable fuss. He was kicking and screaming and making a tremendous racket, and his Mum was clearly trying desperately to calm him down. It turned out he was freaking out over getting a new long line put in (I think his current one had given up the ghost). Fair enough, no kid likes having to go through that. But, he was freaking out over being put to sleep for it. So technically he wouldn't even be awake for the ordeal.
He obviously subsided and got carted off and about 30 or so mins later he was back in the bed next to me and all groggy from being knocked out. Now, I may have been 11 at the time, but I was totally aware that this was a... hmm... slight over reaction to getting a line put in. I had them for 6 years before asking for a port. And the only time I was asleep when getting a line was when they gave me a bronc when I was 6, and decided to swap the venflon in my hand for a line.
It's just ridiculous.
Saturday, 28 November 2009
I mean, really, even in the swimming pool.
Oh well. I'm gonna have to learn to deal with it. Right now, my favorite way to do this is to just flip them off when they turn around. I clearly swear too much, but what the hell. Why not?
I think it's the cold that did it. The stupid thing is, the IVs I've not long finished were b/c I was coughing a lot, although not really considered as that ill at the time as my LF was stable and my weight was up. So, the IVs were more or less to try and stop my cough, as coughing all day and night takes too much energy and it's harder to gain weight when all said energy is going towards coughing and fighting infections.
Where was I? Ah yeah. Basically, the IVs probably didn't work as much as they should have. I've no idea why, but I was still coughing afterwards. If you add that to a cold, you're gonna be coughing more and might as well have not even fucking bothered with the IVs. I don't want another round this year. I've already had loads. More than I usually have, I think. I'm just terrified of becoming resistant to things; I used to have Cipro whenever I seemed to be getting ill but didn't want to resort to IVs. And now it's stopped working. It used to work fine. In fact, it was working fine a year ago - back when I started blogging, and I found out I had MRSA. They put me on gigantic sized bricks they called a tablet (It wasn't a tablet, it was honestly a fucking brick) for the MRSA and also the fun (also fecking brick sized) Cipro tablet, presumably for... I don't know, insurance, or something like that. Anyhoo, on those two tablets, I came back to clinic one week later (they were only for two weeks) and hit 80% in my pfts. And I rarely hit 80%. I'm not complaining about the 60 ish % I have, but I honestly miss my 80%.
I haven't seen my PFTs since I had my IVs started b/c that was the last time I was at clinic, and I'm not back until the beginning of Dec. I really hope that I've improved from 64% b/c if I have, it means that two things have worked - laughing so hard you fall over (Which I believe helps, even if no one else does) and swimming. I've only been twice, as last week, I had my cold in full blown 'Urgh I can barley get out of bed' mode and the week before that, I had to help my sister with something. But I went this week and managed another 10 lengths, which I'm happy about. I would have tried to stretch to 12, but I was knackered and getting progressively pissed at the people pointing out my cough (Why do people feel the unending need to point out the obvious! Yes, for fucks sake, I KNOW I'm coughing! Leave me alone already!)
The main reason why I want my LF to be over what it was, is b/c at 64%, its about 9% higher than what it was when I felt at my worst. It was a bad dip that took me down to 55% and when you get a sudden dip like that, it's not fun. I couldn't walk around school properly, and even though I'm not at school now, if my LF dropped suddenly I know I'd struggle at work and at college. I'm not saying 55% is the end of the world - hell, I know people with much lower LF than that on a daily basis. But my point is, when you loose a load of lung function, whatever it is, its hard to get used to. Hence, why I'd rather my LF crept up rather than crept down.
It might seem difficult to increase your LF when you're coughing a lot and just had a load of (seemingly pointless) IVs... but it's fun to do the impossible.
Wednesday, 25 November 2009
Monday, 23 November 2009
It's painful to find out that another person has lost the battle. Or that they've made the decision to go with dignity b/c they've fought all they can.
When I find things like this out, I react in two ways: I either get upset (obviously, which is understandable and how you'd expect people to react anyway) or I bottle it up. And I don't think about it. I try and keep busy with pointless stuff. And then when you're not expecting it, *boom* it all washes over you and you realise the truth.
And no amount of ignoring it, trying to pretend its not real, can fix it.
No matter how hard you try.
And then there's other people. Those who are waiting for the call that'll change their life. And it's painful to hear about how hard things are for them. But they're the strongest people you can know. And all you can do is hope they get that call in time.
I just.... I wish I could fix this.
Monday, 16 November 2009
My Dad tried to explain film cameras to me again, and showed me how to use the flash gun for it too, but in all honesty, I was incredibly uninterested. I don't think its the cold - I just really hate film cameras when I can use digital. I don't agree with darkrooms (I stand about like a total pleb b/c I can't hear what my friends are saying, and my job is the shortest job of the lot and takes about a minute.) and to be perfectly honest, film cameras hate me. They utterly perplex me.
I think I've accomplished a lot today, which surprised me given the total lack of energy. I've done a few loads of laundry, the proper way by separating stuff, so things like my jeans don't ruin my hoodie (I love my hoodie!) and folded everything, made my own lunch (and we all know how tempting it is to just sit and whine for someone else to make it when you've got 0 energy, but I hauled ass to the kitchen anyway. I would have made breakfast too but I slept in till 12.30) sorted out some college work, attempted to fathom my film camera before my Dad helped and tidied the sitting room. This is all probably b/c I've drank several fortijuices and an enshake in an attempt to have enough energy to stay sitting up. (Which I fail at. A few times I gave up and just decided to lie on the floor in front of the electric fire.)
Oh and my painkillers have finally kicked in. I've had a wicked headache all day and painkillers never work on me until about 2 hours later b/c obviously they hate me too. Which is why I never relent to painkillers for pleurisy b/c they NEVER work. And that's not for lack of trying. When I ended up in hospital from pleurisy they had me drugged up on some pretty strong stuff, and I was probably a bit lucid for the day but I was still in pain. And its been the same way everytime I do crack and dig out painkillers.
I will admit that I haven't done nebs for the past two nights b/c it just hurts my throat too much, but I told Kate I would tonight. Kate has her own blog too, and whilst she doesn't have CF, she has PF. I will admit we talk on msn, webcams on, WAY too much, but it's still fun. B/c she lives in the US, I'm usually her personal alarm clock via facebook. B/c that's obviously how the cool kids do things now-a-days.
(I had to write the above bit b/c I've been wanting to blog all day and all yesterday, and as you can gather from the title, I had nothing to say. So she said 'Blog about me'. I have no idea why that is everyone's response but it's always a place to start I guess.)
Oh well. At least I finally wrote something.
Tuesday, 10 November 2009
Fuck. I was proud of that.
The guy on the forum still won't piss off. Grr. It's so annoying as he doesn't even talk about anything to do with CF. When people ask him why in the hell is he on a forum relating to CF, he says 'My mate has CF' and then bangs on about whatever crap it is at the moment. So yes, homicide is looking ever appealing now. That guy clearly brings out the worst in me. I'm not usually this pissed at someone I don't even know.
I started swimming last week. I sort of underestimated how much effort goes into swimming. Like I've said before, it's been years since I actually went swimming that wasn't on holiday, and the first length in the pool practically wrecked me. When I was younger, I could do several lengths without stopping (although I went swimming every week back then, I didn't just randomly jump in the pool and shoot off) and halfway through the first length, I had to stop and hold onto the side railings whilst I registered that this wasn't going to be as simple as I thought. (I said to my Mum afterwards 'I'd forgotten how much effort goes into swimming. I thought it was just floating about a bit'. She laughed.)
Anyway, even though the first length took a lot out of me, with a few rests I managed to knock the tally up to 10 lengths. Which I'm quite proud of. I don't know when I'll next be going swimming but I know once a week is a good place to start, and then twice a week. To be honest, I can go whenever I like given my free swimming in public times.
I went to town today and discovered the following things when I had a coughing fit (b/c I'm that classy)..
*Yes, I'm coughing
*Yes, it does 'sound nasty'
*Yes, it's rude to stare, and I'm very aware of it
*No, I don't think you've 'had what I've got'
*No, I don't have swine flu and the people overreacting from my cough really do piss me off
*Yes, if you don't leave me alone I'll spork out your eyes. I just need to find a spork first, b/c they're pretty nifty.
Any CFer (or crappy lunged person) can sympathise with those things. People always stare when you have a coughing fit. A lot of people get the remark 'Oh, you should stop smoking' but I've never had that, maybe b/c I look like a kid, but then again, I've seen a stupid amount of kids who smoke.
On the bus on the way back, it was packed, so I had to stand. But I'm ok with that as all the old people and pushchairs need the room anyway. Something tells me all the 30-something perfectly healthy workers and business people who had seats of their own were just too rude to give up a seat for little me, but then again, you can't see my CF unless I decide to have a coughing fit there and then and pretend to cough, choke, splutter and practically die all over them in order to get a seat. Which is just too much trouble.
Something that is much better, however, is that I got my DLA into my account. A few weeks ago I got on at my Mum that she was still getting my DLA and I should get it now that I'm 18. So she phoned up the people and they had a mini shit-fit b/c they 'weren't sure' whether I was capable of having it going into my own account rather than my parents. So they sent a form round and I filled it in. And they finally got round to checking it and deciding that I can have my DLA .Which is why I had to haul my arse up to town and suffer the bus: to find a hole in the wall and get my mini statement to see if I got anything deposited into my (pretty empty since I bought my camera and laptop) bank account.
Anyway, yay. I've got nothing else to write but wanted to blog. And I'm sure that once I've posted this I'll think of something else to write. But sod it.
Sunday, 8 November 2009
And to be honest, to hell with it and I'm gonna blog about it b/c the main person involved probably wouldn't set anywhere near this blog should he think I've rigged his computer to explode or something.
Some people just take paranoia to bullshit levels.
Anyhoo, so this person wanders in, saying he has a friend with CF. Fair enough, I've seen people post in the past maybe asking questions about CF as their friend/boyfriend/girlfriend/complete stranger has CF, and they want to understand more or... whatever. But this guy asks questions completely unrelated to CF, which begs the question why didn't he go onto a forum more related to his problems.
All in all, arguments ensued and caused several threads to be locked due to everyone (including the Mods) getting severely pissed off. As it started on Friday, and I was at work that day, I missed the majority of it and when I checked the forums after getting home, I wondered what the fuck had gone on. In one day, this guy had managed to post like 30 times and get two threads locked. And then another thread had started up and the first post I made was to ask a mod to lock this thread too as even though I'd been reading for about 5 minutes, I already knew it was out of hand.
I got a cocky half arsed reply from the trouble maker saying something about if I'm gonna keep getting all the threads locked b/c I don't like what he says, it's my problem. Which proceeded to baffle me b/c if the fuckwit could learn to read, it was my first post in the whole thing and he was the one causing the arguments thus leading the mods to get all trigger happy with the 'lock thread' button. Oh, and if he could read, he would have spelt people's names correctly. (For god's sake, my name on the forum is Meggzzie, not Meggazie. And spelling mistakes really piss me off!)
The second reply I wrote was along the lines of 'Mods, please, or else I could actually kill this guy' which I believe is a perfectly acceptable response to some guy who continues to piss you and many others off. Funnily enough, he practically crapped himself in worry that some 5ft 18year old is gonna set out into the night after him, welding a meat cleaver, and he mentioned that if he showed that comment to the police, I'd be in big trouble. Which leads me to imagine, if he ever overheard someone say a comment like (in a jokey way) 'I could kill you for that' or anything along those lines, he'd clearly panic and trot off to the police station.
I mean, come on dude, strap on a pair or else we're gonna think its your time of the month or something.
Honestly. Fucking people sometimes.
So, the fact remains that there's someone somewhere quaking in his boots b/c of an offhand comment I made. It would actually be fairly amusing if he DID go to the police and say 'Um, so there's this 18yr old girl on a CF forum who says she wants to kill me...' (never mind the fact that I don't know where he lives and frankly, I'm quite happy not knowing).
I'm glad that people on the forums stood up for themselves and told him where to go, b/c otherwise he probably would have stayed around and asked other pointless and irritating things. He's said about 5 or 6 times that he's leaving the forum and then he comes back on and starts another fucking argument. So I'm sure I'm not alone in being driven to the brink of insanity by people like that.
On a brighter note, I didn't go mad from it all as I went out on Saturday night to the Hexham bonfire. Is it typical that for half of it I was standing behind the one 7ft person there? Of course it is. But fireworks are in the sky, not on the ground, so it didn't matter. After the bonfire I went to find my friends and a few of us had a good night going to the pubs and into Donnies. As a lot of our friends are now Uni students, and have probably pissed away half of their student loans in the local bars during fresher's week, not many people did come out with us, but the bars were completely chocka anyway. There was a stupid line to get into the club, longer than it usually is but the world and it's mother seemed to come into Hexham that night and decided to overflow the pubs and bars after the fireworks. We eventually got in and I was reminded why I don't like going out to places with loud music... I can't breathe in there.
I mean, does this happen to everyone with crappy lungs or is it just b/c I'm spectacularly weird like that? I couldn't keep dancing about like my lovely (ahem, drunken) friends for long as my boots were killing my feet and I was seriously not catching my breath. Me and two others found a sofa to collapse on and I left at 2am, which isn't too shabby considering the 8am wake up call I got that morning for college.
Speaking of college, I got my college ID, and I can officially say I have the worst photo ever. When people compare their photos, and they say 'oh, but mine's so crap', I'd think they're lucky they're actually looking at the camera, as smart arse that I am, I'm looking in the wrong direction as the woman who took the picture (on a crappy grainy web cam) spoke when she was taking the bloody thing. And I'm sure it hates me as when I wear the ID (you 'have to have it visible at all times on campus') it flips round so the photo faces to me rather than outwards, like it should.
Oh well. I'm sure it'll just be an interesting talking point.
Wednesday, 4 November 2009
Ok, so maybe that last part is new.
I'm gonna be stuck with it forever. I know it. The other night, I was laughing, and I had to [attempt to] try and stop laughing b/c it really hurt. Some days its bad, but other days it's barely even there, and thus it makes it twice as painful when it comes back. There HAS to be something I can do to get rid of it. I'm not pleading for more IVs b/c frankly, I'm too afraid I'll become resistant to them when I'm not technically ill, I'm just in agony when I hiccup, or laugh, or obviously if I sneeze b/c that pulls at your lung muscles like you wouldn't believe. Pleurisy aside, I hardly have a cough and I went on a walk the other day, armed with my camera as planned, and must have walked for more than an hour. It didn't really wear me out (aside from a massive hill, but that's to be expected) which is a plus, and it's the only exercise I've gotten lately.
My physio disagrees that walking around town and going through all the shops is proper exercise.
Anyway, I think the point I wanted to put forward is that I still feel shit where pleurisy is concerned, even after that mammoth of a walk, but IVs have worked in making me better in general. So... I can and I can't win. Which means I can wrap up this blog entry with...
I REALLY FUCKING HATE PLEURISY.
Um.. yeah. And now I'm sick of complaining. Can someone slap me please?
Sunday, 1 November 2009
At college. Yes, I know we were meant to be working but you can only edit 20 something photos for so long. And bear in mind we were sitting in the same place for about 5 hours, and we left an hour early b/c we'd done all the work. We used Macs, and I'm on the fence about those things. Sometimes they're quite fun, easy and simple to use, and other times you want to run to the nearest bridge and drop the fucker off it. Like the time when it took forever to load the facebook page (oh, I'm a student; do you honestly expect me not to go on facebook when presented with a computer to sit in front of for several hours?)
And then there's these ones. I can't decide whether I like the full colour one or the part colour, part black and white. And then I noticed that this blog, and also CF, is sixty five roses. And that this picture is a rose. I'm an idiot. But I love it.
Photo madness aside, very little has been done. I haven't even started swimming yet, which is clearly down to pure laziness. I'm also wanting to go out and take more pictures b/c I'm now addicted to photoshop, despite the fact I'm limited on what I can do on it. I just click about and see what happens, and if I bugger the picture, I just click 'undo'. I didn't even do anything for Halloween. My sister cancelled her party for not feeling in the mood, but I'd decided I'd be too knackered after college to go, even before I knew she'd called it off. Turns out she and some friends had a pretty good night anyway and now have the resulting hangovers to nurse. It would have been funny if I had gone, as I'm at that young age where I can drink stupid amounts and not get a hangover, and thus piss off the other people who DO get hangovers.
Ah, the life of an 18 year old. We're so precious...
I'm pretty hopeful that these IVs have actually worked. I do still have pleurisy about b/c it clearly just wont fuck off, and I've no idea why considering that I know other people who've had it and completely gotten rid of it. Even with crappy lungs. At work on Friday I was lifting some boxes about and noticed that it seemed to make me out of breath, which I've not noticed before. But these are pretty much two tonne boxes with a hell of a lot of stuff in. I also noticed I didn't stop to cough, all day. I mean, I did cough in general but I didn't have to stop to sit down and catch my breath before I went a probably very attractive shade of blue...
I was running the other day. I can't remember why, or where to, but I was definitely running. Probably up the stairs to my room. But what I do very clearly remember, is that it didn't wear me out like it has done in the past. Which is always a really good thing.
Wednesday, 28 October 2009
It scared me feeling like that, b/c its just not like me. And it can honestly take a lot to scare me, CF wise. The last time I was most likely shit-scared was probably the whole 'pleurisy nightmare '09'. Which is easily justified b/c I was on the verge of suffocating at one point. And before that it was when my lung function had taken a 15-20% drop (luckily, after that I managed to increase the 55% all the way back up to 80+% on more than one occasion).
I hated feeling lost like that though. And both times it happened I was on my own and the house was quiet, so it sort of intensified the feeling. That, and the fact that I can get jumpy in the house at night when it's dark and your own shadow freaks you out. Weirdly enough I don't think I'd feel the same spacey/being on edge feelings if I got out the house. I want to go on another camera mission and just go mental taking pictures as that can always make me feel better. I might go somewhere next week, but I'm quite apprehensive about taking my Nikon out somewhere. With the amount of injuries I do to myself, I just hope it doesn't stretch to my camera (my phone, on the other hand, is an invincible little fuck, who luckily refuses to self destruct whenever I drop it).
My IVs finish tonight, and when I was coughing earlier, I realised it was one of those pointless coughs which means the IVs have definitely worked this time. Which is great, as I was starting to loose my faith in IVs! There's only so many times you can put up with them when they're not doing the job. And now I'm soon to ditch the port needle and can re-start swimming. It's the only thing that is gonna get my lung function back up when I can't run anymore. I never did find out what that stitch thing was, and I'm convinced its some sort of temperamental hernia. I'm honestly falling apart at the seams.
As swimming means getting out the house, which is incredibly appealing when I don't leave for much other than work or college, I can't wait to get started. It's been a seriously long time since I last took a dive into a pool that didn't include catapulting off a water slide. Speaking of college, when I went last Saturday, we started a new project (one project takes about 3-4 weeks). I went round Newcastle with two others, armed with a Nikon D40, from college, as I'd not brought my own camera with me. Which is lucky b/c it began to piss rain the second the teacher said 'go for a walk around Newcastle...'. All we had to do was choose a certain area and take pictures no further than a 5 minute walk in and around that area. We chose central station and got some good pictures around there, through some tunnels and around the Life centre. I know for a fact that if I'd not gone with the two other people I was with, I would have seriously lacked the motivation, as its just not fun to walk through 50 gallons on rain on your own. But with other people with you, it turns into a laugh, and before you know it, you've walked beyond a mile and not even noticed.
By the time I'd gotten back to college (drenched, but happy) I clicked through the camera and saw I'd taken about 50 photos. We only need 24 max, which means I can ditch the pics I'm not too happy with, which is good. There's always one or two pictures that aren't that good, but if its like last time, when we used film, you can't delete any pictures, and once you've taken them, and taken the film out, you can't go back. Being in the darkroom was insane, pitch black, and I did very little considering how useless I am when I can't hear people (Ok, so I could hear them, but I couldn't understand them. My hearing is so fucking confusing).
Blah. I've got nothing else to write. But for that last post, I'd barely written anything and then wrote something like 'Oh well, no news is good news' which seemed to trigger the edgy feeling. So nothing worth writing about may have happened, but I'm damned if I'm writing that phrase again.
Saturday, 24 October 2009
I am a walking injury.
Only I can manage to practically skin my knuckle when replacing an attachment of the hoover. And b/c of the fun-ness of IVs mean that you have to use heparin after each dose (the stuff that stops clots forming in the line/port/whatever) I bled for ages afterwards. B/c I'm a clear winner. Plus I almost chopped another finger off as I was designated the fun task of smashing melted candles to bits to remove them from the stupidly shaped vase they were in. When will people learn that I can practically render myself A+E bound with even the simplest tasks, so handing me a knife and a load of vases with melted candles stuck inside, is hardly the smartest thing for me to do.
As for IVs, this might actually be the fasted two week dose ever. It could be b/c since my last dose and before this one started, I was remembering what it was like to have a line in my hand or wrist, and I remembered what painful little bastards they were, and then when you get IVs in a port again, its odd b/c you don't feel IVs in a port. Unless you've just taken them out the fridge, and it feels like ice water going through your veins. Which happens to be quite nice on a hot day :)
I'm trying to remember if I've done much this week. Or, besides work and college, if I've done anything. Or left the house for anything. And I clearly have a tres boring life b/c I've realised that I haven't. Bright side, I'm going to my sister's Halloween party next week, I have the added joy of the flu jab sometime next week too (normal jab, not swine flu) and I get to see all my lovely friendies when I go to bonfire night on 7th November (yes, yes, I know bonfire night is actually the 5th, but the 7th is the nearest Saturday. So shush) and that night will see my friends attempt to get me into the one and only (and apparently incredibly crap) club in Hexham. I'd rather just be in the bar and get smashed, but hell, I'm seeing people I haven't seen in months. So bring it.
Ah. At the moment, I feel kinda on edge. Its hard to describe. I've done nothing to warrant feeling like this, but I don't feel what can be classified as 'normal'. I think I feel jumpy, in a way. It can't be IV side effects as they usually wear off long ago (i.e. after the first/second day IVs start) and even then its just tingly hands/drunk walking. Oddly enough I've continued to have the tingly hands and odd smacking-into-things moments usually for a few hours after my IVs but its not strong and I can usually control myself not to fall up the stairs more than necessary. Where was I? Oh yes, feeling jumpy. Meh, I've no idea what has caused this, but it'd an odd feeling which I hope goes away.
Hopefully it'll be solved by ice cream. And even if it's not, I'm still eating the rest of that tub of strawberry ice cream anyway.
Monday, 19 October 2009
Hmm. But I'm still hell bent on improving them. My physio suggested I start swimming, which I'm going to. Unfortunately I have the craving to go swimming now, and with a port needle in, that's sort of out of the question. But the second I get it out, I'll hop on the bus and make a (probably knackering) walk to the pools. She suggested it as swimming is 'brilliant' for your lungs, and I admittedly haven't been in a while. I used to swim every Friday night, and now it's more or less just swimming in the pool when we go on holiday. But at least when I do get my port needle out and I do get my arse back to swimming, I won't be thrashing about like a new born seal, and I'll be making lengths in a kick ass way like I used to.
Even after I slipped on the edge of the pool and ended up with a scar on my chin. (And I still don't know what the hell happened that night to be honest).
Oh, I've just found out I can get free swimming at the local pool until I'm 19. Score.
I escaped work unscathed on Friday, and fell over at college on Saturday. I was picking up my pen that had escaped across the floor, twisted round and landed on my arse. Ow! Luckily there's no major injuries this week. I did fall up the stairs a few times whilst waiting for the side effects from colistin to wear off, but to be honest, its no more than on a usual day. These side effects seem to only be on the second day of starting my IVs, each time I've had colistin, which causes the oh-so-fun drunk walking. But the good thing is, these side effects are getting less and less with each time I have that antibiotic. Which is great b/c I get to reap the benefits of Colistin without feeling like crap anymore. Walking into things and having the slightest headache, I can deal with, especially as it goes away the next day. Having those side effects in three-fold on the first time I ever had IV colistin, not fun. But I still felt ridiculously better afterwards.
I wish I could say I've done something exciting, but I really haven't. I suppose the highlight was college, as I love it. Coming in a close second was getting the IVs. Which seems kinda sad, but I have no life. Haha. I like seeing the nurses and I quite enjoy the IV pole skating whilst waiting for my hours worth of IVs to go through, as I always get the first dose started at clinic, and it's always in the IV gravity bag things. Luckily at home its one syringe and one intimate thing.
For the Heparin flush, my hospital generally uses the brand that comes in a purple box which has an image of a hand with a canula in it. I've forgotten what the proper brand name for that stuff is, and we don't have any lying about in the house, as I can't use that stuff (I'm getting to it... hold your horses.) Anyhoo. As I said, I can't use this stuff as it causes the tinnitus in my ears to go really really loud, and I get a headache from it. Eventually, the hospital decided to change the brand just for me (as in, they go to more trouble when ordering my IVs and such to make sure I get the right brand of heparin, rather than just getting the usual generic stuff they give to everyone else) and now I use a brand called Canusal. This stuff does the same job (it prevents clots in a line or port) but without wicked headaches or louder ringing in my ears.
I'd put links to show what the brand/box of the different heparins look like, only google is tres unco-operative and doesn't actually have an image of either box.
Funnily enough, the company which sends me my IVs sent me the 'wrong' brand of heparin (I've no idea how they managed to cock that up considering its stressed on the order form which the nurse sends out) but it didn't matter much - we've always got extra stock piled from my last IVs that there's enough should there ever be a heparin emergency. Anyhow, so there was more than enough to last for a couple of days, before the delivery people sent round more canusal and picked up the other stuff.
I consider that quite funny, but then again, I'm weird like that sometimes.
Right, I'm off *waves spatula*
... yeah, a little inside joke for those UK CF forum peoples. I love them like that :)
Wednesday, 7 October 2009
And my bus pass came found it's way home :) It must have dropped out of my pocket at school on Thurs, as the school posted it back to me and it arrived on Monday. I was going spare without it. But now I can make any random and pointless trip to Newcastle or Consett or wherever the mood strikes, as I can now yet again, travel on the bus for FREE!! (From 9.30am to 11pm on a weekday, but whenever I like on a weekend!)
My three weeks of IVs are looming ever closer. I don't know whether I'm apprehensive about them (given the fact that they're the 2nd three weeks of IVs I've ever had) or excited. I can't explain the excited thing, but I think it's b/c I'm not feeling crappy right now, so I'm hoping these IVs put me on-top-of-the-world kind of 'feeling great'. That, and they get rid of my cough, which is the main reason for going on them. The highly ironic thing is that I'm going to a party yet again with IVs. My sister's Halloween party, but a party nonetheless. And I know and like people who are going to it, so it'll be fun. But the stupid thing is that I'm yet again on IVs when this party is planned for, and I don't get out much these days. Such is my life. But I'm betting my liver is glad that I'm being very teetotal at the moment. Not so much out of choice, but the few times I do go out and have the opportunity to have a drink, I'm on effing antibiotics. They seem to love me in that way.
I did go to the Freeman ENT on Tues as per my appointment and to be honest, it probably wasn't the best. Every time I go there, I have to take another hearing test and I hate doing them. Its hard to distinguish between the beeps from the test and the ringing in my ears, so its probably not the most 'sure thing' test. This time, apparently I have literally no hearing for the most half. Which confuses me as right now I can hear the TV and hear myself tapping on the keyboard. Albeit with hearing aids, but still, if you've got no hearing, no amount of HAs are going to help that. I did ask if there was anything they could do about the nerve damage - she said my only options are HAs or a cochlea implant, which I put my foot down against. I know some people like them but I just do not want a brick sticking out the side of my head. That, and the fact that surgery is kinda frowned upon with CFers - anaesthetic is nobodies friend, but it can cause major havoc in the lung department when you have a respiratory illness.
My attempt at getting newer or smaller HAs also bombed - she just doesn't see the point as she doesn't believe they will help. Which pisses me off as surely newer HAs (which aren't the size of bricks) would have better technology, right? (See previous post about how they said these HAs would make everything clearer, and they didn't...!). *Sigh* I hate my hearing, I've given up on it. And I'm sick and tired of getting pissed off, embarrassed or upset about it.
On a much happier, chipper and all around better note, I got an extra lens for my camera. When I bought the camera I got a few money off vouchers for other stuff, and I decided to get a 55-200mm lens. It cost a fair bit, but it comes from my grant, and I got £90 off it, so I thought I may as well go for it - whilst I probably won't need the lens this second, the voucher was only valid for 3 months. Now my camera bag really does look the part - I've got the camera, two lenses, a flash gun, a battery charger (ooh yes, I need to buy a spare battery) a spare memory card, and the USB lead. I've also kept the instructions and things in case I get a bit lost (which is fairly likely, knowing me). With the boxes for my camera and lens, and the box for my brand new laptop I bought myself (adding together my wages and left over money from the grant) my room is starting to look a bit like the store room for an electrical goods shop.
Also, you'd think after a whole lifetime of having to take enzymes every time I eat something, that they would be something I always have on me, whether it be in the car, in my pocket or in my bag. Um, no. On Tuesday, before we went to the ENT, I had a cheese and onion bake thing from Greggs. After finishing it and cracking open my coke, I rooted through my bag and started to look for my enzymes. After I couldn't find them, I looked up and said to my Dad, 'Do you want to know something really funny...' and he guessed I'd forgotten my enzymes. Its funny b/c he asked before we left the house if I had some, and I said I did. I was sure I did but I must have taken them out of my bag rather than put them in. I've said about 100 times we need to keep some enzymes in the car or something, as I'm always forgetting them when we go out and I eat something. We still haven't put any in the car though. Personally, I think we're just a family of procrastinators *looks pointedly at the list of 'things to do' which include getting my e-flow serviced and getting my DLA switched over to me now that I'm 18*
Oh and before I forget, b/c I find this funny, I was on the bus today, and it was one of those old and pretty much 'had it' busses, that are loud and shake the seats. I was in the back so my seat had a fair bit of shakin' and I instantly had a thought... 'Hey, free physio!' Heh. Not that I'm charged for physio b/c that would be barbaric but I found it funny all the same.
It's officially one week until my three weeks of IVs. Why, please tell, am I bricking it?!
Saturday, 3 October 2009
The bruise was from accidentally whacking my head off the corner of the sofa (which isn't soft). When I stood up I realised I was dizzy - and laughed at the fact that I've probably given myself concussion, b/c it's apparently just that funny. After that, probably only 10 minutes later, I walked into a fence (Ok, fell over it when trying to jump the little bugger) and now I have an impressive bruise on my right leg, thus, limping. And I know its painful as A, it's my leg, and my bruise, and B, I rarely ever bruise. I'm constantly walking into things, whacking my head off open cupboards and alternating between falling up and down the stairs, and rarely have a scratch to tell my tales of clumsy-ness.
But injuries aside, its not the only tale I have to tell today. The other day, I went up to school to ask if I could claim back (ok, more like 'rescue') my 3 art books of my work from my last school year. I was told I had to wait till November, which I wasn't pleased with, and wished I'd followed through with nicking the keys to the store room and just taking my art books. I got halfway through this plan when I realised the door was open, so I left the keys on a table and headed straight for the door, thinking 'finally, things are going my way!'. Um, no. I turned around to check no one else was there, and lo and behold, the art teacher was walking up the corridor. I legged it around the corner and hid, b/c I knew that if she saw me, she'd know I was after my art stuff and probably guard the door like a trusty Doberman. So I waited until she'd left (incidentally, she was actually going into the art store room, hence the open door) and unfortunately, locked the door behind her and took the keys I'd ditched on a nearby table (Dammit!). Giving up, I followed her and pleaded for my art stuff, and this was when I had a (light hearted) argument about wanting to take my art stuff before people destroy it, as someone had already pretty much wrecked one of my final pieces by bending it in half, and to hell with what the Exam board wants - I couldn't care less and I just really really want my work that I spent months slaving over, home, before someone really does destroy it.
I went off empty handed and after a whole explosion of UCAS college application stuff, I was able to get home. Unfortunately it wasn't that straight forward, as I realised, after going through my bag and my pockets at least 5 times, I'd lost my bus pass. I figured it must have dropped out of my pocket at some point when I was carrying my coat, and retraced my steps. I didn't find it, and just as I was thinking about scrounging a lift off my old school bus, I saw that it had already left. I remembered I still had a £20 gift card for a jewellery store that is in Hexham, and decided to make a detour on my walk back to the bus station. I got another charm for my Pandora bracelet, and now it's looking pretty full :) Actually, I think I'll take a picture of it b/c I think it really is the bee's knees.
Anyhoo, reluctantly realising I'm going to have to pay for the bus for the first time in more than a year, I went up to the bus stop and checked the timetable. The next bus that went past my house wasn't until 5.15pm. It was 3.45 at this point. A tad pissed, I texted my Dad asking him to pick me up, and walked up to my sister's house. I didn't mind this part as I like going to my sister's though. I think the one thing that annoyed me (more than the lack of art stuff, or loosing my bus pass) was the fact that I'd walked all the way from the bus stop, up to school (which is probably about a 25 minute walk by my standards) and then having to walk from one building to the other a few times, as QEHS is two buildings. Then having to walk all the way back to the bus stop, and then finding out the bus wasn't turning up for more than an hour, and having to walk a further 5-10 minutes to my sister's house. Bear in mind I'm not in tip top condition. I think the right word here is probably 'crap'. Tip-crap condition, if you will.
So, after murdering my lungs with all this walking, huffing and puffing and inward screaming from the frustration, I finally got home safe and sound, and my Dad was fairly tickled at the fact that I lost my bus pass. And then I realised I needed it to get the bus to college on Saturday for my course. I like having my bus pass b/c it means I don't have to talk to the bus driver and embarrass myself with crappy hearing moments, as I often do. With my bus pass, I avoid this b/c all I have to do is show the pass and I get my ticket, and I don't have to say a word, which probably suits many people quite fine.
My college course started today. And whilst the course itself was good, and I love the fact that we jump right into work as opposed to pissing about watching slideshows and such for weeks on end, the start of the day was pretty crap. After realising that the bus I was on was actually taking longer than I realised to get to college, it took a different turn and completely avoided the college. I ended up at the Eldon square shopping centre, which is about 30 mins walk from the college. It was now 10.15am, and my course started at 10am. Damn. The next bus that went anywhere near the college wasn't for another 20 mins and the dude at the information desk said I was better off walking there. So I set off. And it began pissing rain. After getting lost about 5 times, getting soaked through to the skin and getting progressively upset through the whole being wet/lost/completely out of breath thing, I finally found the college, and walked into my course 1 hour late. I didn't get any flack for this though, as I explained the whole bus cock up and anyway, all I'd missed was the tour (and the introduction bit), but it wasn't a bad thing as I'd technically already been there before.
So, the course was good, getting soaked wasn't as good, but right now I'm watching good TV, chatting on msn and have a tub of strawberry ice cream, so things could be worse.
And that was my last couple of days. No word of a lie.
Wednesday, 30 September 2009
I just don't learn, do I?
I didn't manage to sleep until about 3am, which was starting to get annoying, but I did eventually drop off and woke up at 10am this morning, which isn't too shabby.
As much as I love the CF forums and such, I just can't seem to get over the feeling of not really belonging there. Why? God knows. But it's always when people are having a laugh and creating a ridiculously long and wonderful to read, and not to mention, bordering on physio b/c of how much it makes me laugh, topic, I just don't feel part of the group. It's like when you meet new people, say at a party, a meal or what have you, and whilst everyone knows each other, you're the one person who is standing there, quiet and keeping out of things b/c you don't know anyone.
I just don't like that feeling. I suppose from the CF2 site, it could be b/c that's an American site i.e. you get the odd person from UK, Australia and where ever else, but the majority are American (or Canadian). I don't know why I don't feel more involved in the UK forum though - maybe it's b/c whilst I do hover around I don't post on every single topic. And when I do say something in one of the bigger topics that everyone always likes to be a part of, whatever I have to say ends up sounding stupid, and sometimes off topic.
Anyway, abysmal blogging, social life and sleeping aside, I haven't done much. My cold finally buggered off, and I finished Cipro today, and it's probably had no effect. I'm probably going to end up resistant to it with all the times I take the thing and it doesn't even work b/c I apparently like to have a cold at the most inopportune time. My college course starts Saturday. I'm nervous but that is to be expected. And then I get to go to the Freeman hospital at some point in early Oct (I want to say the 10th, but I'm not 100% sure on the date, and checking the date involves moving from where I am. So sod it.) And I'm going to raise hell about my crappy hearing aids. I know that sounds bad, but these things are really rubbish. When I got them 5 years ago, I was told that they were 'digital' and that they'd help me focus my hearing more, i.e. I'd be able to block out background noise and hear the person I'm talking to, better, and this would help my hearing.
Did it fuck.
Anyway, as I'm sure my hearing has decreased in the last 5 years, and the simple fact that these HAs are just bordering on ridiculous b/c of their size, and the fact that I've heard that new HAs have different ear bits which would be ideal as I break the ear bits on the ones I have. This confusion over ear bits aside, new HAs are smaller and are probably much better than the ancient things I have. I know they obviously wouldn't be the best, as these are from the NHS and I'd have to pay for more expensive and advanced HA technology, but surely the NHS version that they have now is much better than it was 5 years ago.
Saturday, 26 September 2009
Anyhoo, there was something I wanted to mention that I don't think I've mentioned properly before. Organ donation. Its always been on my mind since I found out about the whole CF = possibility of needing a tx, but I've never thought about who, out of people I know, are actually signed up. It's not the easiest thing to bring up, b/c most times organ donation is what happens when you die, to put it bluntly. People don't like thinking about the deed itself just as much as they don't spend their hours planning their own funeral, b/c one of the first things that many people link organ donation to is morbidity. What you should see it as, is an opportunity maybe to give someone the life they've never really had. Plus, surely its comforting on some level, for friends and family to know that you didn't die in vain, and that its one of the most selfless things you can possibly do in your life.
It was on my mind a lot whilst filling in the form for a provisional license. I've never been signed up as an organ donor before, as I suppose, many people with CF wonder if they've got anything worth giving. When I was 17, a letter came through the door saying 'Now you're 17, why not sign up to give blood.' My Mum told me that I probably shouldn't, given the fact that I probably loose pints via the hospital and could probably use the blood I've got. But organ donation is another matter, b/c you can't keep using something once you're floating away out of your body, or whatever happens then. The 'organ donation' section of the form is optional, obviously, but I knew I should tick something. I just don't feel right knowing there's a chance I could need a tx myself, but at the same time, refusing to be a donor should I ever choose to kick the bucket (not that I plan to obviously. I'll still be blogging away 150 years later, complaining of the taste of Cipro, as per usual.)
I thought I'd have to tick the separate boxes (You could say, for example, they could have everything bar maybe your eyes or pancreas or whatever you have an unnatural attachment to.) But then I realised that obviously they'd know not to use my lungs, or my liver (b/c of the shit-sheer amount of drugs we CFers take.) and anything else, say my kidneys, pancreas, heart and eyes, they test to make sure they're a-ok. So I ticked 'Any of my organs and tissue', although I doubt they'd want my skin/tissue either, as CFers are lucky enough to be salty as hell.
I asked a couple of friends if they were organ donors, or if they'd ticked the box when filling in their own provisional form. They said they'd left it blank. I don't understand why people are so against doing something that A, could save numerous lives and B, you wouldn't even notice b/c you're haunting the teacher that failed you out of a class in high school. Plus, they knit you back together after it all, so everyone else doesn't notice either. It's pretty much a win-win situation.
Aside from the six-foot-deep part, but that's inevitable.
Monday, 21 September 2009
I can thank my little sister for this. My throat hurts SO much right now, and at first, I thought it was maybe me adjusting to the hypertonic saline. But it's not. It's just a cold. A bright side is that I've only just started my 2 weeks of Cipro - the cold should be long gone soon and my Cipro can get to work. It never seems to work well when I have a cold. I've learnt that antibiotics of any kind + a cold = no chance in hell of getting better. At least, if you get a cold when your antibiotics are just finishing.
I'm pretty sure I had a cold last time I was on Cipro. B/c I haven't been on it for ages, and the last time I went on it, it never worked. Not only that, but I completely lost my appetite. Thankfully that isn't happening this time - I'm always starving right now. In fact, more than I have been, which is good, could I be bothered to move and go to the kitchen. I'm kind of hungry like I was when I first started pred - I could eat mountains of food and still be hungry.
Other than this, literally nothing has happened. A lot of my friends have started uni now, and some have moved away, which means that our little crowd is getting progressively smaller. Hopefully the laughs will stay just as big though. My own college course doesn't start until Oct 3rd, and I've already got my camera for it :) Nikon D3000, thank you very much. And I'm practising as much as I can b/c when I get to college, for the first two weeks we'll be showing what we know, and finding out which course suits us best- if I get my basics sorted out hopefully I can jump straight to the level 3 award in photography, rather than having to do level 2, then the level 3 course. B/c if that's what happens, it could take an extra year - so far there is no news on whether or not the level 3 course is repeated in early 2010, allowing level 2 students to take that course in January, rather than having to wait until Sept 2010.
And even when it's all over, I have no idea what full time course I want to go on. Ok, so I have a vague idea, but what I don't know is whether the course (s?) I'm taking this year will get me onto it.
On a brighter note, I'm feeling much better compared to how pissed off and upset I was feeling when I wrote the previous post. It helps to write it down, especially if you've not really got anyone to physically talk to. I do know that these scheduled IVs are none-negotiable - I need them whether I like it or not, whether I'm feeling crappy or not. B/c I know full well if I refused them (although to date I can't remember point blank refusing IVs) then everything would hit the fan and I'd get ill at record speed. Because that's just how things work.
Because of the sheer size of the fecking bricks that are Cipro, every time I take it I'm practically coughing and choking and gasping and crying over everything b/c its an unpleasant bugger to take - its just such a gigantic pill that it feels like it lodges itself in the middle of your throat. Especially if you don't take a big enough drink. And if I take a too big a drink, I cough and choke and gasp and cry over everything in the process of trying to swallow the damn thing.
Not only that, but it tastes disgusting.
I will never understand the need for medical medication-making people deciding to literally bottle the taste of vomit and packing it into the fucking tablet/nebuliser/what ever shit we have to take. Although they obviously don't care, b/c they are not the ones who have to take these things.
Oh well. I'm off to drink some tea. Or maybe some of that lemony stuff that is supposed to help when you have a sore throat. I just hope it's better before I have my hypertonic saline tonight b/c I can't imagine salty water will make it feel better. Or the coughing.
Friday, 18 September 2009
My Dr immediately agreed with me trying the HTS, as when I get a bright idea like this, for some reason, it seems to really work on me (Last year, I suggested ditching Tobra IVs and trying Colistin IVs, partly to give myself a break from the constant Tobra I was probably subjecting my leftover hearing to, and b/c I thought that trying something different would have a more powerful effect than my usual IVs. And it did, even with the side effects). Within two minutes, my Dr had written up the prescription for HTS, and also for Cipro (Boo!) as I really shouldn't be coughing like this only 4 weeks after IVs.
When I tried the HTS on Wednesday night, I started coughing immediately, which I suppose is a positive thing -it's working fast. Then on Thursday night I used it again. Again I started coughing straight away and I shifted a fair amount of stuff that would have otherwise been festering around in my lungs for god knows how long. So from now on, my evenings look a bit like this:
- Hypertonic Saline in eFlow neb, takes just over 5 minutes
- Physio (PEP mask, mixed feelings about that damn thing) takes minimum of 20 minutes
- Colomycin or TOBI nebs in eFlow (alternate months) takes just over 5 minutes
- Inhaler x2 (I hate the damn thing. It does nothing!)
When I went to clinic on Wednesday, I had no idea if I'd get higher or lower numbers for my PFTs. I gained weight, which was good (0.6 kg, although I hoped I'd gained more than that at the rate I've been eating) but when I did my PFTs, even though I'd done twice as much physio that morning and my chest felt much clearer having done that, the best I got was 1.95L (63%) for my FVC and 1.75L (66%) for my FEV1. Whilst that is a mere 1% drop, I'm pissed b/c these numbers are lower after IVs, than the numbers I blew last time, right before I started IVs (I hadn't had IVs for about 3 months I think). Whilst I finished my IVs four weeks ago, I had been hoping for an increase.
Guess you can't have everything.
Wednesday, 16 September 2009
For some reason, the idea of this tattoo (or rather what it says) means a lot to me. It's not really a negative reminder of CF, its more or less a word that has inspired me to want to increase my lung function, and its also the word that makes me feel ok with the prospect of lung transplant (even though I'm no where near this stage, I know that when it does come around, I'll have no doubts because all I want is to be able to breathe freely). I know that if people who don't know me/know I have CF would be confused on why I want the word 'Breathe' tattooed onto myself, but to be honest, a lot of people have tattoos that mean something to them, and people can just accept it - they don't really need an explanation.
Another reason why I like it is because it's not every day when you see that as a tattoo. It's not something that is likely to be ripped from the wall of the tattoo place. And it's not something any random person would want to copy, unless they think that the word 'Breathe' has meaning to them too. And it doesn't for many people - breathing is taken for granted too heavily, and it's only when you've got into a situation where breathing is the most vital/painful/difficult thing at the time, when you find out how important it is to you. Not that breathing isn't vital to everyone, but hopefully you get the gist.
Hmm. I like them both. There was another drawing with a more elaborate 'B' but I've ditched that one. It's just too fancy. Which is probably why I prefer the second drawing. Unless I tone down the 'B' even more on the first one. But I can't be bothered with breaking out the pencil at this hour, so it'll have to wait.
But this is going to be my first (and probably last, if we're honest) tattoo. So it's gotta be good.
Tuesday, 8 September 2009
It's taking forever and a day for my cheque for my camera to arrive. I suppose its the excitement of getting a brand new, (freaking awesome) DSLR that's making it seem to take so long. But they did say the check would be on its way near the end of Sept. So my Dad said he'll buy the camera and I can pay him pack when the check arrives. I like this idea because it means I get the camera sooner, and can start fathoming how it works before my course starts. If I ever get the start date. Obviously we would have gotten the camera already but it's a popular camera and every place is sold out. I've changed from the Nikon D60 to the Nikon D3000. Mainly as the shops were saying that the D60 is being 'phased out', so I have to get an upgraded model.
Yesterday me and my Dad went to basically every camera shop we found, and had a look at the D3000, to make sure we're getting the best deal. At a camera shop in Gosforth, we were talking to the guy at the counter, and he mentioned how its much better to buy it from a shop rather than online - there's a chance you can end up with a copy, not the legit thing, if you buy it from somewhere online. Especially if the price is looking a little suspicious. And the guy also gave us the brochure for the Nikon D3000. Now I want it even more! There's also extras to get, like the camera bag, spare battery, filters etc. Anyway, the gist and nub is that we have to wait until next week for anywhere to have both the camera and lens available, because there'll be a delivery of them sometime this or next week.
I finally made my colomycin myself last night (I know, I'm 18, I should have learnt a LONG time ago) and promptly cut my finger on the glass vial for the sterile water. Because for colomycin nebuliser, you have to mix water, the colomycin powder stuff, and something else (which I've forgotten the name of. Well done, me). It involves the sharp metal from the colomycin glass thing, a sharp needle and a sharp glass vial for the water.
This is totally going to go well in future attempts(!)
Wednesday, 2 September 2009
I don't think I've actually ever been free from it the second it took up residence in my right side. Granted, at the moment its seldom painful, and when it is, it's no where near as bad as it was at it's worst. When I was recovering from that time, it was probably weeks until I could breathe without pain, whether intense or just sheer irritating from the consistency of it. I took painkillers for a few weeks too, morning and night (the first week or so I think it was 4 times a day) and then stopped taking them in the morning because it was wasn't as bad as it was. At night it was pretty grim though. I was woken up several times every morning, from the pain, because I hadn't taken painkillers the night before.
Anyway, so I got well enough not to need painkillers. Yes, the pain was still there, but eventually it did dissipate almost completely. I remember waking up one morning and realising it didn't hurt to breathe. Or at least, it didn't hurt to breathe in deeply. I'd probably feel a tiny bit of pain for 2 seconds at some point during the day, but it meant that I'd beaten it, and it was finally going away. When it hurts to breathe every time, your weeks feel like months, and the days feel like weeks. You get the gist.
It was never completely eradicated though. Whilst I'm doing my nebs every day, trying to remember to do physio, taking all my tablets (about 30+ a day, which is what many CFers can do in their sleep) and just generally looking after myself a lot better than I was a few months ago, pleurisy still won't leave me the fuck alone. And it comes for a visit at the worst times. Your witness: At a friend's 18th earlier in the week, it was getting late and people were starting to go to sleep. And I felt this horrible sharp pain. The word 'Pleurisy' quickly flashed before me, and I left the room that I'd been in with a group of friends - I never make a scene with pleurisy (or anything CF related, if I can help it. Hell, I don't subject my friends to a coughing fit, they're not seeing me in crippling pain). I went outside, and at 3am, it was pretty damn cold. But for some reason, the cold helped. All I could do was take deep breaths, but the pain went away. I couldn't bring myself to tell anyone why I'd disappeared though. If they can't help, why worry them, right?
But this sudden, worse than it's been in recent weeks, pleurisy pain, was horrible. I freaked out a bit, if I'm honest. I truly do not think I could go through the bad side of pleurisy again. It hurt too much, and I really think it's the worst pain I've ever felt. And this is coming from someone with numerous un-related CF scars, cause I was a complete klutz when I was a kid.
(Well, falling down some stone steps on a crappy plastic tricycle, not the best of moments.)
Sunday, 30 August 2009
At the top of my 'nice things' list, is obviously getting to go to London courtesy of Make-a-wish. (Although does it make me bratty if, when I look at the 'make a wish' site, and I see that they haven't included my wish in the 'latest wishes' section or the 'we had a wish' bit, I feel a little peeved. Hell, my wish was awesome, and I'd really like to share that story on the site). But, there is another totally awesome thing that has happened, that I haven't blogged about as I didn't want to jinx it. After all, it has only been confirmed in the last week.
I applied to a CF further education grant fund, called the 'Joseph Levy memorial fund'. Its where people with CF who want to pursue further education (i.e. college or Uni) can apply and ask for a grant to help pay for the course or things that they may need. I applied, and completely forgot about it, as it was much earlier in the year when I did apply, and they said that it wouldn't be decided if I would get a grant until June, when the trustees of the charity would decide who deserves what, and how much.
When I got back from London, sitting on the door mat, was a letter addressed to me (A fairly rare occurrence, as pretty much the only things I get in the post is my - ever stationary - bank statement, and letters from the hospital.) So, I opened it up, probably expecting junk mail, and found another letter from the Joseph Levy memorial fund, stating that the trustee's had awarded me £650 towards the cost of buying a camera for my photography course. Of course, this grant would depend on my exam results. However, between the time of writing the grant application form and meeting with the college, I'd changed the course I was going to be on. Now, my results wouldn't depend on whether I go in on the course (which meant that I was probably the calmest A2 student this side of the British Isles on results day) but I did worry I wouldn't qualify for my grant, as I'd applied under a different course.
The letter had stated to reply once I had received my results, to prove that I was going to be going ahead with the further education, and not trying to scam out a charity of £650, I guess. I wrote a letter thanking them for offering me a (conditional) £650 grant, and explained that whilst I was changing courses, I would still be doing photography, and in September 2010, I will be continuing with the photography course I had originally planned on, as this first year will ensure me the qualifications I need to be able to continue on what I had originally wanted.
Two days or so later, my Dad came into the room and said that the people from the grant had phoned. He had a kinda disappointed face on, and I said 'What, have they said no?'. Then he broke out in a massive grin, laughing, and saying that I got the grant. If you've ever watched 'Friends', it was like when Joey pretends he hasn't gotten an acting part from an audition. Then goes 'Yeah, I got it!'
I'm so, so pleased that I got this grant, as DSLR cameras cost a bunch. Since I found out I definitely got the grant, I've been doing research on the ideal camera to get within my price range, and the best place to get it (whilst the camera I've decided on won't change, the price does change from shop to shop.) I've decided on a Nikon D60, and I still have enough money from the grant to get a flash, spare lens, camera bag, memory card, filter covers and a spare battery pack. Then I've probably spent the entire grant, but that's what it was for! And I can start my college course free from worrying about a student loan debt from having to buy so much camera stuff.
Oh yes. I was talking to Bree on MSN before, and said that whilst I want to blog about something, I can't think of anything worth blogging about. Basically, the only ideas I had wouldn't even keep the most easily amused person paying attention. So Bree said 'Blog about me.' So Bree, who is doing abso-fucking-lutely amazing since having her double lung TX a mere three weeks ago, certainly deserves her own little section of amazing-ness. I'm so glad that your PFTs are so far doing really well, and you have, however long it takes, to see even higher numbers (for some people, I've heard that they hit over 100% in less than 6 months after TX, whilst for some, it takes a little longer. It probably has something to do with your rate of recovery or something.) I'm also glad that you can now run/skip/jump about and sing to your hearts content (or at least to your healing sternum's content) without getting out of breath or needing oxygen.
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