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Showing posts from 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…

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…

Welcome to Bronchiectasis.

Fuck.

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…

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 m…

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 t…

The randomness of updates.

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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…

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…