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.)
I find it annoying I only ever blog when something like an admission happens, and even more annoyingly, thats why I'm blogging this ti...
This country (or in most cases, the world), is pathetic about disabilities and those who have them. I can only speak from my own experiences...
A month ago, we got back from an amazing 9 days in Orlando, Florida. The first proper holiday we've been on in 4 years, saving up for so...
I find it annoying I only ever blog when something like an admission happens, and even more annoyingly, thats why I'm blogging this ti...