Saturday, 30 January 2010

Waiting for an answer.

I really hate UCAS.

I still don't have a reply from the college I applied to. I'm actually getting worried, as pretty much everyone is getting replies left, right and centre, and I'm sitting here waiting for something that just doesn't seem to want to happen.

I only applied to Newcastle, even though you can apply up to 5 different places. You might think I'm being an idiot this way, but its what I had to do - no other nearby Universities had a suitable course, or even a photography course at all (Yes, Durham, you stubborn little fuck). Going to uni further away would mean living in halls or near uni, and I swear I would royally fuck that up. I'd either mess up my health, or my uni work, or be murdered by someone who couldn't take my constant coughing (I've woken up friends at parties from coughing loads at night. Last time, it was Phil, and he looked really pissed off, given the fact it was about 6am). Plus, I like my clinic, and I know and like all the nurses and (most of) the Doctors. So I don't want to either move clinics or travel a stupid amount every 6 weeks.

I wrecked myself in the first year of 6th form, when I lost 20% of my usual lung function but continued to go to school every day. I don't think I actually took a day off, which, when I look back, makes me realise it was pretty damn stupid of me. I mean, I couldn't walk from each class without having to stop at least twice, and the 2 minute walk home from the bus stop started to take me 15 minutes. But I kept on, and refused to stop. I got IVs sooner than usual after my Dad phoned the Dr when he saw how crappy I was feeling, and started to get back to normal. Still, I've never forgotten how hopeless I felt, or the fact that I admitted to Steph that it felt like my lungs were actually giving up. She was the only person I told. In hindsight, I probably should have told the Dr.

My point is, if I'd chosen to apply to other universities, meaning I'd leave home and live at uni, that'd probably happen again, cause I'd have no one to tell me when to stop.

I didn't get a reply from UCAS last year until end of Feb. But that wasn't an offer, it was a decline. Hense the being scared. Cause if I don't get into college, I have no idea what I'm gonna do. When I think about the alternative, not getting into college on the course I orginally planned on, (Again... Grrr) I just feel lost and honestly can't think of what I'd do. Even though I'm not one for thinking of the future much (I'm more of a 'live in the moment' person) it seemed simpler to think of things in the theory that I'd get into college. After all, we were told that the course we're currently on, being an award, certificate then diploma, would get us onto the foundation degree course no problem. So it felt like a sure thing.

It might have something to do with the fact that I applied for photography. I know that art and photography courses take longer, as the applications are sent off later. Which means later replies. Although Steph said she'd gotten her reply in the post. I forgot to ask what she's doing at uni though. If it's not a further art course then that'd explain why her offer came sooner than mine.

UCAS ranting aside, not much to report. I was talking to my Mum earlier, and she wants to phone up my Dr and see if he agrees that she thinks I need some Cipro - I shouldn't be coughing this much, getting so out of breath, and all sorts of other things this soon after IVs have finished. She asked me if I agreed, and I said yeah, especially as all I wanted to do after I got home from college was sleep. I haven't been that worn out in a while, actually reduced to tears from plain exhaustion (and being pissed off, but thats another thing).

Whilst I agree with her, part of me wants to say no. Cipro just doesn't help. The only thing it's actually done the last few times I went on it is make me loose my appetite for two weeks. And whilst it does increase my LF, it goes back to my normal 70% ish when I finish. And I don't actually feel any different. The only way I know it's increased my lung function whilst on Cipro is cause at least twice, I've had appts which overlap being on cipro, and each time I've had LF results in the high 70's. I love seeing those numbers, even if they're cause of Cipro.

Hmm. We'll see how it goes.

Wednesday, 27 January 2010

What's the difference?

I keep wondering whether or not these IVs have worked. It's strange when you can't tell a difference, maybe b/c feeling better was so gradual, you don't notice it straight away, or maybe b/c I'm exactly like I was a few weeks ago. The thing with IVs, is that they make me feel crappy b/c of the whole walking into stuff and just generally feeling worse on the abx rather than off, and then when the side effects wear off, you feel better. But is 'better' any different than before IVs?

I didn't feel that bad before I started them. I was coughing, a lot, but that's basically normal for me. Granted, I did loose weight, but I'm pretty sure that it's coming back now. I really can't stay at 42kg. I'm actually terrified they'd force me back to my PEG. And I fought pretty damn hard to get rid of the damn thing.

More to the point, there's just no room in the house for more medical shit. It's not even a challenge to find CF stuff in any room of the house.

I'm still coughing, still having annoying chest pains (um, and my port still randomly hurts) and getting stupidly out of breath way faster than I used to, and I also found out that if I stand up completely straight, I feel like the top half of my lungs close up when I breathe in.

The bright side, is that I'm not coughing as bad, the chest pains don't last long, so I can deal with them. As for my port... I really don't know. But I know it works, so I still don't know what the eff is causing it.

College is being pretty good physio. Seeing as we have to go round Newcastle taking pictures for each new project, and Newcastle has plenty of walking, it all works out well. When I'm walking with other people, I walk a lot further. And I don't really pay attention to where I'm walking (Which is asking for injuries if we're honest) but it means within 10 minutes, I've gone twice as far than if I was on my own. Cuz, if I'm on my own, I notice when I get tired, and all I can concentrate on is the fact my breathing gets shallower. I do walk slower than others, but my friends don't mind, and just slow down to let me catch up.

Also, the fact that we decided to drive down to the Quay rather than walk, meant that I didn't have to walk for an extra 45 mins (both ways actually) in the minus degree weather. I'm not sure how far we did walk. We went along the River Tyne, across the bridge to the Baltic, and back to the car. It definitely felt further b/c of how cold it was (I did tell my tutor it was piss poor planning not to tell us to we'd be going out. B/c of that, most people didn't have their cameras and had to borrow a Nikon D40x from the store room. We also forgot our coats. Not a good thing.)

And besides, if we're not walking, people are paralysing me with laughter. I've already decided that laughing helps keep my LF good. So I'm gonna damn well continue being incredibly easily amused.

Work is... boring. Although, at 18, if I already had my perfect job, that'd probably be taking the piss. I mean, I'd not complain, but surely there'd be a catch to having a high profile photography job before I'm even 20.

All I do is pretty much fold sheets. And fold. And fold. It gets dull and repetitive funnily enough. Although in the room I'm in, there are two little heaters. Which are surrounded by things like [more] sheets, and boxes and the like. Which means I'm clearly on my way on becoming a little arsonist, as I always switch these heaters on (And um... leave them on when I leave. Whoops). I always wonder if something will catch fire. I'm not attempting to become a felon, per se, as these heaters keep me nice and toasty.

But unless everything is fire proof, something is gonna happen.

Friday, 22 January 2010

Welcome to Bronchiectasis.


I know CFers generally end up with this as it's scar tissue, and we cough a hell of a lot/have lots of infections which causes scar tissue and all that fun stuff.

I didn't think my lungs had gotten to that point though. I mean, I saw my last xray, and sure, there was loads of apparent scar tissue all over these damn lungs. But bronchiectasis? The label makes it seem worse.

I'm over reacting, clearly. What I'm pissed about is that I wanted to increase my LF. I'm at 70% at the moment, which is still pretty damn good. But I wanted to have a ridiculous increase. I don't care how stupid that sounds. Bronchiectasis means it's hard to have an increase seeing as your airways are fucked to hell.

God. CF scares me. It honestly does. Random chest pains, coughing SO much, not being able to sleep, being so short of breath you don't even want to think about walking up those stairs... and now fucked up lungs. Even more so.

I just need to suck it up and deal with it. Stop being such a wuss. Really. Grow the fuck up and stop wining about every. little. thing.

I'm still pissed though.

Anyway. I found out I have the joy of diffuse bronchiectasis through the letter that my Dr sends to my GP recounting my latest appt (seeing as I don't exactly understand what people say, I just wait for this letter to find out what happened). This letter also had my blood test results from my annual review. They all look good. Both my RAST and IgE levels have gone down some since they last checked them, which I'm happy about.

Dammit. I have to stop reading this letter. I know I have CF, and pseudo, and Aspergillius, but this damn letter makes it just seem that more terrifying. Seriously:

'She has significant cystic fibrosis lung disease with diffuse bronchiectasis on chest xray and chronic pseudomonas aeruginosa lung infection with associated allergic aspergillosis.'

If Cfers weren't living medical dictionaries, I wouldn't understand a word of that. And maybe then it wouldn't bother me so much. Unfortunately I DO understand it.

Oh well. Like I said. I'll deal with it.


Wednesday, 20 January 2010

Spark of inspiration.

Yeah I never got one.

I've been trying to write a blog for days. Not even about anything particular. But I like writing when I've got nothing else to do, even if it makes no sense at all to anyone else.

Getting frustrated at the blank screen doesn't help. But it's not my fault I can't think straight at the moment. Which I don't even understand myself. It's strange that you can have too many thoughts and not be able to think of a thing to write.

Anyway, impending mind implosion aside... um, nothing. I finished my IVs on Tuesday (YAY, freedom!) which was pretty damn welcome - I hated waking up early to do morning IVs, which were even earlier morning IVs when I had college or work. And out of the entire two weeks, I only had help doing three doses. Which isn't bad for someone who was stubborn as hell about asking for help doing them.

I only got about 5 hours sleep on Mon night, so waking up at 10am for morning IVs on Tuesday wasn't fun (10am is early for me, thank you). But I couldn't really get back to sleep. So I went out to Newcastle, and wandered about a bit (Which I regretted once I was knackered). The main point of this was to check a bus route home from college. Which I didn't even do. But I know which bus gets me home, so I don't really have to be bothered about that. Anyway. I was completely wrecked when I got home. And actually fell asleep at 11.30pm. Which, if anyone knows, is early for me. VERY early. The stupid thing is, I've been out all day in the past and stayed up to one of those fun stupid o'clock times. Maybe I just used a bit more energy yesterday than I usually do.

Annoyingly I (willingly) woke up at 10am today. Which was pointless as I had no IVs to do. But instead of wearing myself out doing pointless excursions around Newcastle again, I've hardly left my room today (Apart from going on the wii and then laughing at other people on the wii. Both which are good physio). The only thing I accomplished was to sort some of my 6th form art books, and I sliced my finger open in the process. Which hurt. The salty-ness from CF, makes it hurt, a LOT. Ow.

Stupid genes.

Saturday, 16 January 2010

It never gets easier.

This is the last thing I wanted to write.

RIP Jess.

If I'm perfectly honest, I'm in major denial over this. It doesn't seem real.

This isn't fair. Jess fought so long to get those lungs. I guess the fight took it all out of her. We knew she had hit a road block in the recovery, but everyone was convinced that she'd be ok, that this was going to be a long, and slow recovery, but she'd come back from it just like she'd always done.

She never really got a chance to use her new lungs. She waited too long. This shouldn't have happened. It wouldn't have happened if there were more people signed up on the organ donor register.

I don't know why people don't just do it. You sign up, it takes two minutes, and you make sure your family knows your wishes. And with that you can save the lives of people who desperately need it.

I know I've mentioned this a lot. But I'm hardly going to stop now. If you're already signed up, make it a little mission to get other people signed up. The more that sign up, the more lives are potentially saved.

Wednesday, 13 January 2010

The randomness of updates.

Headaches and IVs (and nebs).

Fantastic combo or what?!

Yeah I was bored too.

Anyways. Not much has happened, mainly cause of the snow. I managed to get last Friday off work (and Saturday off college), as I didn't want to even attempt to get there with the roads in a dire state, but also cause Colo was still wrecking my balance. For some reason it's lasted longer than it has in the past, although getting less each day.

It's getting silly though. On Sunday, I stood up and literally fell straight down. Not something I'm used to. (Yeah, we can leave all the 'but you walk into stuff all the time' jokes at the door for this one) It was taking me bloody ages to even stand up in the first place too. I'm sure if anyone had been in the room with me, they would have been falling over laughing. I can see a bright side here though - I'm small, so I don't have far to fall!

And the headaches... Or just the one determined bastard. It stuck about for about two days. And I tried to get rid of it. Hell, I stopped wearing my HAs for the rest of Monday to see if it would help, as sometimes if they're being annoying, it just creates headaches. But no, that didn't work. I both like and hate the silence of not wearing those things. It just continually reminded me of those headaches I'd get in the hospital when they jacked the O2 off me after my last port op. Cuz, they'd take it off, my sats would drop and I'd get a REALLY annoying headache. But, this can't be that, as I haven't had an op, and my sats are bouncing about 93/95 (My average is usually 95. I miss my average of 97 tho) and I can't find any other explanation, like being dehydrated or something like that.

My house is full of wimps - the strongest painkiller we have is ibuprofen. *Sighs* Aha, until I raided the cupboard (I'm gonna call it a mini pharmacy and be done with it) and found some co-codamol.

Well, at least it finally went away. Now all I need is spring to appear, to get rid of all this snow (Boo for being out of breath within 2 minutes b/c of the damn stuff) so I can go all 'Camera mode' on everything. Funny thing - the local pub is interested in my photos and want to look at what I've got, as they're considering having one blown up for a big picture on the wall, cause they like the sound of some local pics I've taken.


Wednesday, 6 January 2010

We make our own fun.

Drip stand skating. It's incredibly fun. This isn't exactly the best video of me, I'm usually much better (aka, not bashing into walls) but I'm gonna blame the colistin and be done with it. Even if that's not technically true.

Getting IVs is hardly the highlight of my week, but it got me out the house. And there were basically zero patients there as everyone is snowed in. Seeing as it was my annual review, that involved taking what felt like several pints of blood. And I apparently only find out these blood results if there's something wrong with them. Which pisses me off b/c I never find out the results for stuff. My Dr showed me the xray they took a couple of weeks ago. It's not the best xray out there if I'm honest. Basically every inch of my lungs are either infection or scarring. Apparently there's a lot of scaring there. It looked pretty bad where I've had pleurisy, but I was hardly surprised about that. But, fuck, that xray was practically almost completely grey/white, whilst healthy lungs with no infection or scarring would come up black (apart from the ribs). I forgot to ask to see my xray before that one so I could see if my port has moved, as I swear it has, just to the left a bit.

It still works though, which is good. Especially after the fantastic 'dropping the hairdryer on my port' moment I had last week. That fucking hurt! But the nurse started the IVs before I even realised if I'd wrecked it or not.

I've also got to go have a bone density scan soon as I've been on pred for months now and I haven't had a scan for years.

What I didn't like about the appt was the fact that I've lost weight. I literally do nothing but eat most of the day, so begs the question where the fuck the weight is actually going? My LF dropped, but technically, my last LF test results weren't my actual numbers, as whenever I'm on Cipro (as I was last time) my LF is always higher. Which meant my LF is still around 70% which is pretty damn good, and nothing to complain about, but my Dr seemed concerned about the drop from 78% to 70% until I reminded him about the being-on-cipro thing for my last LF test.

Oh, that, and the fact that I saw 'MRSA positive' on my next appt sheet. Which lead to me being all confused, as I was told I got rid of it. I know that it was on the sheet to make sure that I only get an appt where there's other MRSA patients (which means that if I don't have it I'll fucking be leaving with it) so... it's a whole confusing thing.


It's been a tres snowy start to the year which has resulted in lots (and lots) of photos with that lovely camera of mine. Speaking of which, I'm back to college on Saturday, and starting the certificate part of the qualification. Hopefully no more darkroom stuff though, as that really gets annoying...

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