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.
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