Friday, 22 May 2009

Ode to a steriod.

I've been put on a course of prednisolone. And all I can think about is the last time I was on it (albeit a much higher dose for a much longer period of time) my face puffed up and I looked like some sort of hamster with a big fat potato stuffed in each cheek. I looked through the instructions of the pred as I've never had the chance to before (as last time I was on pred was when I was 11/12 years old) and even though the side effects section includes quite an impressive list (including 'hairiness'. And I'm not lying about that either. I saw it in black and white print) I still focused on the one that said 'puffiness of the face'.

This dose of prednisolone is 20mg (four 5mg tablets) once a day for two weeks, then down to 15mg a day for two weeks, then 10 mg for "thereafter" which is the doctor's code for 'God knows how long.' I knew that he'd suggest pred. I was actually thinking of it days before the appointment today, and I specifically said to him, once he had suggested it, that I will take it as long as I don't get "all puffy faced again". Yeah I think that's the exact phrase I used too. He (and my Dad) said that this shouldn't happen as last time I was on a pretty hefty dose, for months. And I know it was months as I was given soluble tablets, which tasted like... well like every other medication. They always seem to have a specific taste, aptly defined as 'absolutely disgusting'.

The main reasons of being put on the dreaded steriod medication is because I still seem to have pleurisy. The odd bubbling/trapped air feeling in my right side intrigued my Doc and it'll hopefully kick the arse of the stuff and get me back to the health I should have been two IV courses and one course of oral Cipro ago. I'm not sure what my PFTs were, I think they dropped slightly, but I've forgotten the numbers. However, I do know I lost weight. It's been a while since I got a letter summarising the latest appointment, with all my numbers and such (a copy of the letter which is sent to my GP regarding each clinic appointment, even though the guy has never met me) so the most recent one is from about two appointments ago, because in between that time, the chest clinic (and various other parts of the hospital, including all the other outpatient clinics) have moved to the new and improved building which is now finished. And it took bloody enough time too. At least two years, although probably much longer, as I'm rubbish on remembering and time-lines.

The dietitian caught me before we left, and gave the the task of gaining 1kg in the two weeks before my next appointment (mainly to check what pred is doing, and if its even working). I complied with this quite fast, so I'd better get eating...

Sunday, 17 May 2009

London, baby!

Yesss! I heard from Make-a-Wish on Saturday morning, and they said that they've agreed that I can do my first wish - to go shopping and see the sights in London. I'm quite excited, as you can imagine, but I've no idea what exactly is happening, or when. All I know is this:


Yeah, I'm one of those sad people who has never really travelled round England, yet alone abroad. I've been to various places in Scotland and Cornwall and a few places in Ireland, but London will (mainly) be for the shops. Oh yes. We also discussed things like going on the London Eye, which I immediately thought 'Ohh, good photo op!', and they also suggested seeing a show, although I said I'd rather not, as there's no point in spending money on seeing a show if I'm not going to understand them. I've been in many a dance show myself, due to the fact that I spent about 8 years learning Ballet, Tap, Modern and Jazz, and I was in a production of 'Annie' too, but I just cannot stand sitting watching a show. Its mainly to do with the crap hearing thing, and the fact that the few times I have watched a show, I've always had that unfortunate seat behind some 7 foot tall idiot, or the woman with the beehive hair 'do. Its actually the same when I go to the cinema. Seeing as I can barely understand what they're saying, I get restless and from now on, I'm considering only going to subtitled screenings. Unfortunately they don't do many. Damn.

So, this week, I get the joy of no school. Anyone else would have to turn up for the next week, to revise, but thanks to the fact that I have finished my coursework (yey!) my artwork (double yey!) and I have absolutely no exams this summer, I can start my study leave (and do no studying) as of last Friday, and I only have to go back to school next Friday, where its the last day for the year 13s. And because year 13's like to go out with a bang, there's usually a theme, to dress up with. This year, it's the 1990's.This'll be interesting...

I'm not looking forward to my clinic appointment on friday. I think I still have pleurisy, due to the fact I still have the pain at the base of my right lung, and a new one, down the middle of my sternum, which isn't there right now, but sometimes hurts when I cough or breathe deeply, and felt like someone had jabbed me in the middle of the chest with a pointy finger. I also have the damn continuous weight loss issue, and my appetite is still acting like a child. I have food in front of me that I love, and I just don't want it. There's nothing worth eating in the house, and I'm starving. I have yet to clear a plate of food these days, and its getting on my nerves. On Thursday, I struggled to eat an entire McChicken Burger, which usually doesn't last long. I think IVs and Cipro are to blame for this. Before I had Cipro the last time, I was doing OK, then my appetite when down, and it wouldn't go back. I thought IVs would help the issue, but no, its basically made it worse. I know people can loose weight when they're ill, but frankly, I'm taking the piss. There's probably some stupid psychological factor in there too, where I'm just looking for an excuse for my appetite. However, I have no problem gaining weight - It'd be great to wear my jeans and not have to faff about with a belt or have my Mum pointing out the fact that you can see my hip bones. Not to mention my skinny wrists and ankles.

Now, if you'll excuse me, I have the double bill Lost season 5 finale to get to.

Tuesday, 12 May 2009

Dear lungs, I hate you.

My lungs are disgusting little creatures. Yesterday, whilst I was innocently minding my own business and watching some crap on TV, my lungs were crackling. And I don't mean the kind of crackling that a doctor hears over a stethoscope. This must have been in between my lungs and skin, as you could feel it when you put your hand on my side. Disgusting. To make matters worse, it wasn't comfortable, and this got worse when it felt like there were air bubble trapped under my skin (well, that's what it felt like in the moment) and when one of these things felt like they had popped, OhMyGod did it hurt. I couldn't stand the rattling and did every type of physio I know in an effort to shift it - PEP mask, Acapella, CPT, breathing physio, and just a good old huff. But nope, nothing worked, and I discovered that 3 weeks of IVs have actually made it harder to get the stuff up as I'm not coughing much.

It finally went away on its own, and I was left confused and trying to explain to my Mum that it felt like there was wrapping paper stuck under my skin, as when wrapping paper crackles, that's exactly what it felt like.

That's all, pretty much. Just felt like updating you with this lovely piece of information of how insolent my lungs are (and of course, not forgetting pleurisy who must have a hand in this).

Thursday, 7 May 2009

Like clockwork.

Pleurisy is an evil little bastard. I thought it had gone, at least to some extent - its still sometimes painful at the base of my [right] lung when I breath quite deeply, or hiccup. BUT... for the past two mornings, I have woken up at 5am in mega pain, quite like what I experienced on that fateful Thursday, and it pretty much follows the same routine, to the point of thinking that pleurisy runs on a script when it feels like kicking up a fuss, which involves waking up in pain around 5/6am and realising that I've still got till 7am till I have to be up for school so I can *attempt* to sleep through the agony cos I'm far too tired to attempt to reach for any painkillers.

Its plotting something. It just has to be. I have a feeling it may have something to do with the fact that I managed to finish all my coursework, hand it in, finish my final [exam] art piece and get started on my art display for the art corridor (All 6th form art students are given a section of wall to display their art work they have created through the school year).

Despite having a 15 hour art exam, which was the time given to create the final exam art piece, I finished today, with time to spare, and my teachers are quite pleased with the bag I made from scratch and allowed me with enough time of today to start my display, and be able to use tomorrow to continue with the wall (which would have been the last five hours for the art exam if I'd faffed about with it anymore). Even with a looming deadline like that (If you're not finished in the 15 hours, you're screwed, pretty much) on Wednesday, I left 20 minutes early so I could skip down to the library so I could print out my coursework. More than 70 pages worth, which took longer than I thought. And I almost missed my bus handing the damn thing in to the teacher because of her ridiculous demands.

This has been a very pleurisy/school related post. But there's nothing else to comment on. Aside from the fact that I still have a minimal appetite and get unpleasant coughing headaches quite frequently. But, my Mum has just made my favorite fish pie (when you compare this to the shop-bought stuff, well, my Mum's fish pie is Heaven on earth), bought some aero mousse yoghurts and a giant aero bar and made pancakes for tea, to ply me with calories, so yay :D

Long year? Long post

This year has been weird. I haven't done anything. Haven't achieved anything. Some time at the beginning of the year these days, I w...