Too excited!

London, Baby!!!

So, it's Sunday night, and I have to be up at 7am, possibly earlier, to make sure I'm actually awake and have everything I need, and get the taxi at 8ish, up to Newcastle train station. I'm gonna go nutso with my camera, my Dad has gotten me a new memory card for it so I can seriously take too many photos, and I'll post as many as I can when I get back. I'll have to work out some way to put loads of photos on here without making the page impossible to load. I'm thinking some sort of slidehow thing.

I'm beyond excited. Waaaaaaaaaay too excited. The 3 hour train ride will probably seem to take eons, but it'll definatley be worth it. In the mean time, I'll have to read Harry Potter and the Deathly Hallows for the millionth time.

[Me, on the way to our yr 13 prom!]

Not sure what to think...

Erm, what?!

I just got this email, from a random stranger. It was from some sort of e-card thing, with this message attached:

Meg: Have you been treated by a Psychiatrist? You seem to need one badly. Not only your writing on your websites shows you are a big baby, but you are a bit (maybe a lot) whacky, and too self righteous. I think you have more than what was that? CF? Consider dropping a visit to a pschiatrist, you might benefit from it. I am sorry you have this illness, but consider it urgent to get emotional help. It's only for your mental sake. After reading all you have writen online. specially4u
Hope you'll like it!

Huh.

I don't know what to think when I read this. And for your information, I don't see a psychiatrist. And I don't feel the need to see one as I have this blog to vent through. Yeah, that's one of the whole main ideas for me creating this blog. (A second reason is to connect with other CFers and other wonderful people.)

I clicked on the link that followed the message, it was an e-card of a baby sitting in the middle of the screen, and pulls the message 'You did great, congratulations!' out of it's diaper. Riiiight. I think the whole point was because it was of a big baby sitting in the middle of the screen, and the woman's message said that she thinks I'm a big baby. I usually like it when I get emails from people who have read my blog, offering kind words, and they make me smile to think that someone has spent even just 5 minutes of thir day to write a kind message to someone they don't even know.

What do you think?

And a cough cough here...

So, coughing fits.

Yeah...

I'm sure everyone has been through this. The moment when you're happily in the middle of public, minding your own, then all of a sudden, it happens. The kind of coughing fit that your lungs seem to squirrel away and keep for the moment you're surrounded by people, on a bus, at a party, or in the middle of a school assembly *scowls*. I don't know what causes these, and I've asked myself countless times why these coughing fits have to be in the middle of public. Although that's because you're aware you're having a coughing fit, and everyone is staring at you whilst your face goes beetroot, and you're trying to cough into your handbag/sleeve/whatever you can get your hands on. I suppose I probably do have coughing fits in the privacy of my own home, but I don't really notice them, and to be honest, I usually call them physio.

They tend to be worse in public because you try and stop it. But seriously, it could be easier to stop a speeding train than stifle the almighty coughing fit. You feel it creeping up your throat, you try and hold your breath, you have a drink of water in the hope it'll somehow stop it. But no. You cough. And cough, and cough and cough. Until everyone in the vicinity is staring at you, and you're trying to vanish through the floor.

I do tend to have a coughing fit when running. I can't run and cough at the same time, so I'll usually sit on someone's low garden wall and try and recover whatever breath is actually possible. It's always embarrassing when someone looks out their window to find out who or what is causing enough noise to rival a category 4 hurricane, or if someone is taking their dog for a walk or are getting progressively toasted in their front garden. Stare all you want buddy, I ain't gonna elaborate. The most ironic time this happened was the other week, whilst I'm attempting to grab back some lung function via forcing myself to run every evening, some guy is standing outside his front door, puffing away on a cigarette. I refrained from going up to him and telling him that if he continued to smoke, he'd be the one having coughing fits to rival mine.

It's not just running or public situations that causes your lungs to have the sudden urge to deprive you of oxygen. It's also laughing. It's probably just as well that I can't hear too well, as if I understood everything my friends say, and I laughed as much as they do, I'd never stop coughing. When you start laughing, it's only a matter of time before you're coughing, and depending on who you're with, you're greeted with a deathly silence, or people amazed at the fact you've just totally nonchalant about turning purple through coughing. However, people's responses to the laughing coughing fit don't bother me, as it's usually around people I know. Unless I'm watching a really funny thing on TV. I can actually count watching a comedy show as physio, as it shifts so much crap from my lungs to be honest.

There is also The Coughing Fit That Scares The Shit Out Of Animals And Other Living Things. That's always fun. When all of a sudden, there's nothing you can do but let it rip and it's so sudden, loud, and almost violent sounding, that birds flock from a nearby tree, a cat runs out from underneath a car, and all the dogs in the vicinity have began to howl. It would be funny, but unfortunately this is also the type of coughing fit that causes everyone to once again look in your direction whilst you try and pretend nothing out of the ordinary has happened.

No, what does bother me is when the public coughing fit - the one that sneaks up before you get a chance to escape - causes people to say a bunch of unhelpful stuff. This can range from 'Ooh, that's a nasty cough you have there' (Really, I hadn't noticed...!) to 'You should cut down on the cigarettes'. That comment makes me want to hurt the person who said it. But there's also the third one. The old woman who insists on forcing some sort of sweet down your throat, because apparently, a black jack, or a bonbon holds the almighty mystery of a cure for knackered lungs. I am tempted to explain to people what it is. I figure, hell, I'm never going to see them again and it'll at least stop them thinking I'm a child chain smoker. But I don't. I just avoid eye contact and leave the person who commented without their explanation, and probably thinking I'm a bit rude.

Well, fuck it. When you cure knackered lungs, or at least CF, then you'll get your reply to your insanely rude, yet offhand comment.

That grated feeling.

I've been running. A lot. Yesterday I took about 15 minutes, but this was mainly because I walked half the way - I've been getting these really horrible stitches on my right side near my hip, which start up the second I begin running. So I stop and sit for a second, or walk instead, and the second I start up running again, ARGH, pain in my side. I don't know what the hell is with this thing - its from last year, when this supposed stomach muscle hulked out and pretended to be a hernia, most likely from my non-stop coughing sessions, but I thought that it would have gone away by now. It does get bad when my coughing is bad, and usually goes away for a while after I've been on IVs, but then it comes back, practically expecting a welcome home party, and all I can do is grumble that I want the damn thing to leave me alone. Its definitely not a hernia according to my doc, so there's no quick fix with surgery or anything. Not that any surgery is quick with me. I end up being so oxygen deprived with ridiculously low SATs on oxygen, which means having to stay in hospital for an extra few days. Or at least that's what happened when I had my port replaced in Jan 2008.

I thought that maybe this stupid stitch/muscle would go away when I got used to running, but if anything, each day it comes back quicker, and it hurts so damn much. And its the kind of thing that painkillers just don't help. Its like that area is invisible every time you take a painkiller. Its actually a little bump, which explains why we thought it was a hernia last year, which, just like when I had the beginning rattling of pleurisy, disappears when you get near the doc so all he can do is say that there is nothing you can do about it. Sod's law, huh?

My clinic appointment was yesterday, and it appears that pred is actually working. It increased my appetite loads, so within just two weeks, I gained 1.1kg (or 2 1/4 pounds I think it was), which is usually something I could just manage within 4-6 weeks when I was jonesing to have my PEG out. The dietitian was pleased, although it was a woman who I've never seen before, as I think she's now sharing the patients with the woman who I usually see, and I also kept the physiotherapist pleased by explaining how I run every evening. We've figured it out that it should be running, physio then nebuliser, to maximize getting rid of the crap in my lungs, and the fact that as I breathe deeper after running, it makes total sense to do that last - getting tobi or colomycin into the base of my lungs to get rid of those hefty plugs. Speaking of which, when I was telling the physio, she was pretty interested, but the student nurse looked pretty happy to have a backseat in this conversation. Poor sod.

As of tomorrow I decrease my pred to 15 mg for two weeks, then 10mg for three weeks, and I just hope all the positive sides will stay around - my weight is really starting to piss me off with how easily it can drop off, and how difficult it is to get to a suitable weight. Every 5 seconds someone is saying how they wish they could take their extra fat and give it to me. The problem is with people saying that, even though we're just joking about, say one wrong thing and you could be implying that you think that they are fat. And so far I've managed to avoid anyone thinking that my chuckling along with them, but I'm convinced that one day someone is going to get all offended. Urgh.

So, London :) They have agreed that 29th, 30th June and 1st July is the date that is going to stick. The only problem is that I can see on my calendar the other two dates that have been scribbled out, and just keep thinking wistfully how I could have been in London for the 15th-17th June. I did want to be able to show my friends some cool pictures and tell them what happened when we have our final prom on the 26th this month (Ah crap, we still haven't fixed the loose neck on my halter dress!) But it looks like I'll just have to make them envious by posting a load of pics on Facebook instead or something.

Ooh, and finally, I think my PFTs are holding steady at the moment, as my lung function tests were almost identical to last time, although my appointments are usually 4-6 weeks rather than just after two weeks. I'm hoping that running will strengthen my lungs and improve my PFTs to at least mid 70's - 80's. THEN I can focus getting up to the 90's. I have never been around 90% in my PFTs as far as I know - although I've only been getting the results myself since going to the adult clinic. There's been changes as far as 30% in my lung functions in the past year - being as low as 50% last July, and climbing up to 80/81% in October 2008 and February this year. I've added my results from April 2008 onwards to the side bar, which I'll update when I get my latest results, but there are a few numbers missing where I've lost the letters recounting my latest appointment and numbers back in 2008, where I read the letter and then just left it lying about. I should ask for new copies from my hospital folder.

These letters are pretty interesting to read, especially for me as I forget everything the doc says, or miss things because I didn't hear them. It also means I can compare my previous weights/ PFTs/IVs with others to see which had the most effect, and it also means I'm not trying to persuade my doc to let me read my folder. I don't know why its so wrong for me to want to read the hospital folder that is mine. Its not like I'm reading someone else's confidential stuff, its just notes and my past information, but I have a memory like a sieve, and cannot remember anything to be honest. There is something else though - my letters which are just summaries of the appointments and are sent to my GP to keep him up to date (I have no idea why they send them to him though - the dude has never met me) - they always seem to mention how my doc thinks my IVs are getting pretty frequent, and how he'd rather I'd be able to be healthy enough to stave off IVs just a bit longer, for reasons like my future health, avoiding any more hearing loss and making sure that the IVs stay effective. He says this all to me almost every appointment, but there's just something different about seeing it in print.

I'm trying SO hard to stay healthy, but my lungs seem to enjoy IVs so much, and I just miss it from when I was younger, when I could have a 2 week course of IVs, and usually be able to run about, sleep without needing a gargantuan amount of pillows and laugh, without descending into an almighty coughing fit, for at least a few weeks. Now I'm usually still coughing when I've finished IVs, its just the cough sounds less like a death rattle and more like a tickle, but this doesn't last very long. Before you know it, I'm back to coughing to the point of my throat feeling like it's been assaulted with a cheese grater, and even though sometimes this is not necessarily a cough that needs IVs - if its a cough that's bringing up gallons of crap I'm happy about that - sometimes it just gets on every one's nerves, and I'm totally aware that it's probably scarring up everything too. At the moment I don't think I need IVs, despite my cough - I consider needing IVs being completely worn down and out of breath from just the smallest of things, and at the moment I can run about, and cough a little, and bring up those hefty plugs that are so disgusting; it's just the cough is the kind that can clear a room in 60 seconds because people think I'm contagious. And for a small explanation towards the title of this post - I actually said 'I need a lozenge' yesterday, after coughing like a loon after my lung function test. That's the kind of cough I have at the moment. Oh my poor throat...

I've practically turned my brains to sludge trying to think of a legible way to say this next bit, which was also mentioned in my letter - the doc thinks that there is potential allergic aspergillosis in my lungs again, for the first time since 2001, but as I don't know WHEN the results saying my IgE levels are elevated are actually from, e.g. before/during my most recent IVs, I can't be sure if its still there, as IVs and/or pred may have decided to ask the aspergillous to vacate the building known as my dear lungies. My appointments and little letters have been all confused recently, mainly as the clinic has finally moved into the new hospital building which was being built over the last few years. As the nurses and everyone else tries to navigate themselves through the new labrynthine halls, some things are forgotten, and at my previous clinic appointment before yesterday, they didn't ask for me to cough anything into a gross little pot, which is why I'm confused to WHEN these IgE levels are from - they could easily be from a previous appointment and the doc has forgotten to mention it, or they could be from when I was plonked in hospital with pleurisy and they took a gallon of blood. With this kind of messed up time line, I can only hope that, like I said before, the IVs or pred has told aspergillous to bugger off.

Anyhow, heres a picture of me when I got my hair curled at the metro centre on Tuesday.


I enjoyed getting this done, and it was a bit of a surprise at the time - There are small stalls through the middle of the shopping centre that aren't in the shops either side, and a woman at the Herstyler stall asked if she could curl my hair. I didn't know up until then that these stalls were for free demonstrations for the 'herstyler' brand. I was happy that the curls lastest all day, but it confuses me that if I can straighten my hair and it'll stay straight, how come the only time it'll keep curls that aren't my natural curls are when the woman is using a £150 curling iron, and every other time, they've just flattened out after 30 minutes. Urgh, anyway, you don't want to get me started on a rant about my hair now, or I'll never shut up.

I think I'll finish this here. There's most likely something that I meant to write which I've forgotten about, which I frequently do, but at the moment my arm is feeling pretty dead after getting the final cervical cancer jab yesterday. There's even a small purple bruise to go with the tiny needle mark at the top of my left arm. Lovely.