It's all about me

2012-02-13T01:03:00.006Z

A short update for anyone who still pops by almost 5 and a half years later!

This year has been an incredibly busy one so far (always a good thing). Health wise, a few weeks ago I was finally able to celebrate getting through an entire year not requiring IVs, the last time this happened was well over a decade ago. I came down with something a few months ago and was *certain* I was going to need some medical intervention, but luckily I was fine. My lung function while still high had dipped a little bit (not even anything significant but given my obsession for numbers and charts, *I* noticed) and stayed that way for a while. Then one day I went for a swim and noticed when I checked my lung function afterwards it had gone up marginally. It was then I decided it was finally time to give 'getting fit' a real go. When I told my friends about my plan, they decided too that it would be good if we all shaped up. Having this goal with friends by your side is *definitely* imperative. There have been several days where all I wanted to do was go lie on my bed and watch TV but because we agreed to go exercising, it meant that the exercising won out. I also took up running *gasp*. I'm not very good, but have managed to run just over 2 miles a couple of times a week so far. So every other day now we either swim laps or run. Not as 'un'fun as I imagined or feared it would be. And my lung function now is back up to its higher peaks. I would LOVE to get it to go higher to beat my own personal best so hopefully some day it will. But the benefits and good health of exercising are more important than the numbers anyway.

Other health aside, the digestive system is still continuing to rear its ugly head every now and again. And I'm still as useless as EVER at predicting and preventing the bowel blockages. Which means while treatment works, I'm not really sure if it ever clears it as I tend to let it go so bad.

*The next bit may be a bit TMI (as my 'cool' mom would say) so feel free to skip on ahead. Or if you want some insight into what goes on behind the closed doors of the stranger (me) you may sit beside on the bus and wonder why they may act crabby as though they haven't been sleeping, please continue to read*

The other day I was knocking back Movicol sachets every couple of hours until, worryingly, everything stopped working inside me. Total standstill. For those who are not familiar with Movicol, I would imagine if you have a healthy bowel then taking a few would put the fear into you of not wanting to be too far away from your bathroom for a while. Most over the counter digestive tablets go with the motto 'soothing, gentle relief from constipation'. Movicol goes with 'effective relief from constipation'. So it meant I had to move on the strongest stuff available to me, gastrograffin. Which worryingly, also didn't work straight away (cue minor panic and planning about what to do next!). I've read that most people who, from the first few minutes after swallowing, don't leave the house for the day when they take this . But I don't know, clearly I'm strange, as I never have reactions like that. For me it's like taking a sennakot or motillium really.

Anyway, short of the long, is that it eventually did work. I had to take the afternoon off class the next day as this stuff full on dehydrates you where you need to drink several litres of water while you're on it. For me to drink one glass of water probably takes an hour. And plus, everything aside, when it seems like a wise idea to knock this stuff into you at 3am, you tend not think about the fact that you pretty much don't spend much time sleeping afterwards. So while I am continuing to push my body to be fitter and stronger, it would seem someone else intends for me to embrace what 80 year old women go through. I am determined I'm not in need of the bed pan for another few years yet though. God forbid.

I hope you all continue to be well. That wasn't quite the 'short' update i intended it to be...

2012-01-01T01:30:00.002Z

I'm posting this here because I know I'll forget to.

Please take 20 seconds to vote for my friend Rob. You don't need to watch the video, just hit vote at the bottom!

He has come from behind to reach second place.

http://santander.rockaboxmedia.com/youtube/?page=vote&video=m8xYknuIy9Y&competition=trickshot

Thanks! xxx

Happy New Year

2012-01-01T01:29:00.002Z

Wishing everyone a very happy new year! I hope 2012 see ambitions fulfilled and hopes realised for you all.

And most importantly, that you are all blessed with good health! xxx

2011-11-09T20:42:00.002Z

I am still alive. I am (thankfully) still well.

Hoping to avoid the avalanche of flu induced ill health that was last Christmas, I got my flu shot early this year. While it would be nice to take credit for being so forward thinking and responsible, it was actually my GP who reminded me of it when I was seeing her for something else.

Unfortunately I developed a cough/chest infection two days later. I sounded like a smoker. With asthma. My lung function dropped way down. The timing wasn't very good, but luckily, with a lot of exercise (swimming) and some oral antibiotics, and the diagnosis of 'virus' from the doctor (which explained why the antibiotics didn't seem to work), I seem to be back on track again.

Throughout all that I became increasingly paranoid about other meanings for my symptoms. I think it's natural to be cautious and concerned, especially as time goes on with these things. But I will be seeing my consultant/team at the end of the month and hopefully they'll reassure me that there are no long term significant changes with my health. (I should point out that when I say 'paranoid', I don't mean 'freaking out', I mean passively jumping to conclusions about alternate explanations)

Apart from all of that, I have big exams next week. And a undergraduate graduation ceremony to attend right smack in the middle. It's the stress of life, but I enjoy the satisfaction of meeting these challenges, simply because I've been given the opportunity to be able to.

2011-09-13T00:20:00.003+01:00

2 months to the day since I last posted. All is still (thankfully - touch wood) well. The Shingles passed, and I don't think there have been any long term side effects (I've heard that pain can be long term or life long or something involving the word 'long', but amazingly I seem to have escaped)!

I am now embarking on an exciting new adventure.... twelve whole months of productive procrastination! And I'll get a few more letters added on to the end of my name after it as well - always a bonus! In fact, I'm about to start a masters in neuroscience (the title is somewhat more specific than that, but, got to keep my stalkers at bay...you know how it is...). I litreally do NOT know what I want to do with my life. It's funny because five years ago I probably had a list a mile long of things I would do if things worked out well, but in fact they have worked out so well, it's like I have gone beyond the amazing and novel things to strike off that list, and now I have an actual *life* to plan. Shame, I'm pretty useless at planning!

So here's to hoping it all works out well. And if some random mystery illness that nobody has EVER heard of decides to land itself on me, well, guess it will add a bit of spice to my life!

Also, because we can't stay young forever, my brother (the BFg) is getting married to the G-raze! I am naturally highly excited about this! Plus, my actual sister and I really grate on each others' nerves regularly so it will be nice to have another sister! Congratulations to them both :)

2011-07-13T02:32:00.004+01:00

Ooops better retract that 'K' and replace it with an 'S' as in 'S' is for Shingles. Exactly two weeks, one x-ray, one renal ultrasound, three blood tests, two urine samples, four doctors, and one rash (and two misdiagnoses) later... it has finally been confirmed that the mystery pain is from Shingles.

How do I feel? The pain is less than last week, but I still need painkillers at least once a day. And a rash has popped up at the site of the pain. So all in all (unless this gets worse) I feel fine.

The only remaining outstanding part of the puzzle is that two weeks ago, my white blood cell count in my urine was 100. And last Tuesday it had risen to 190. So I'm not sure what that means....

My only concern is that I have a friend who has never had chicken pox before and has a wedding to go to in ten days and I am HOPING I haven't given her chicken pox, because that would make me feel TERRIBLE.

2011-07-05T21:02:00.002+01:00

I take that 'K' for kidney back; after much investigation of joints, hips, bladder, kidneys today at hospital, during a routine 'let's rule out any stomach problems while we're at it', turns out I'm actually quite badly blocked up! ...to the point where paracetemol doesn't touch the pain. Oopsies.

Quite a relief really that kidneys are *touch wood* ok. They're still investigating the possibility of kidney stones though, but the pain and problems are a blockage. So now that I'm treating that, hopefully it will take the pressure off my abdomen and the pain will decrease.

While it's annoying this was missed on Friday and Saturday by two different doctors, I really should know my own body a bit better, however the only symptom I got was pain, so it was a tricky situation.

Anyway, 5 years anniversary last weekend, lung function 101%... I don't have much to complain about! :)

2011-07-01T23:32:00.002+01:00

I hate it when i curse myself! On Tuesday I got a dull ache in my lower right back / hip. Convinced it was some sort of arthritic pain I figured it would be ok. Yesterday I needed pain relief and today I gave in and went to the doctor, so he could confirm I have some sort of osteo-arthritis (inevitable for me, considering the cocktail of drugs I pop on a daily basis).

However, the doctor swung my legs around and about and determined it wasn't my bones. It was my kidney. Amazingly I've never had a kidney infection (except that one time when my kidneys stopped working and briefly went into failure mode, but I was in bed when that happened and the morphine made sure I wasn't really 'with it' when that happened), but this is really, really painful!

Anyway I got drugs and I'll probably pop up and see my team on Tuesday. And I just ticked off the letter 'K' on my alphabet list of conditions and such I have managed to acquire. I already have osteopenia for the 'O' anyway.

2011-06-27T22:00:00.004+01:00

Another Summer is well underway. The last three summers, I've travelled around, whereas this year I'm mostly staying put, since I'll be moving to another country in September.

Healthwise, I'm *touch wood* still doing great. I'm just home from my holidays, which were a LOT of fun. Although, at one point I looked heavily pregnant. I think it was a combination of greasy food, incredibly hot weather, dehydration, and a total lack of physical activity (which was inevitable since that was kinda the aim of the trip), but thankfully with a couple of movicals, this passed by the next morning. And more thankfully, at least I only LOOKED pregnant! I'll have clinic in a couple of weeks, 11 days after my fifth year anniversary - how quickly time flies!

I passed my exams, and was delighted that I came out overall with a first class honours. So barring any random ash clouds or volcanoes going off in Ireland, I'll be home to graduate in November.

This was just a short update, thanks for everyone/anyone (anyone?!) who still pops by from time to time :)

The Other Side

2011-05-23T14:17:00.002+01:00

That 'mental challenge' seems so long ago now, forgot I felt that way haha. I'm officially finished college. I got accepted on to my masters of choice. I will get my results of my exams and all in a couple of weeks, fingers crossed I passed everything! I don't know my official thesis result yet but I do know I did very well, thankfully!

Apart from that, no news really. I may swig a bottle of Gastrograffin later, for the laughs. And to get rid of the pain in my stomach I've had the last couple of days...

Challenges

2011-03-29T02:18:00.002+01:00

When I did my lifeguard training, my body felt like it had been through hell and back for three days; that no matter how much I slept my body felt like it had not rested at all. That was the biggest physical challenge I have ever done. Some may argue that in fact I've been through a lot harder, but in reality, my body in my past medical endeavours - while extremely difficult at times- kind of just went along with the flow...ish.

In exactly 36 hours, I will hand up my thesis. This is by far the greatest mental challenge I have gone through. It's never ending; it's never right; it's difficult.

So if I EVER say again that I wish to put myself in the position where a thesis is required of me, please tell me no.

....I am referring to Monday, when I will be applying for a Masters. Someone save me from myself.

I promise to try harder....

2011-03-19T02:08:00.002Z

I once read -somewhere- that the man who lies is more honorable than the man who just avoids telling the truth, because the man who lies has convictions. Or something? (I'm not sure if 'honourable' is probably the right word there...anyway I got what the guy was trying to say) I should really close this blog down if I'm not going to blog....or leave it open, but blog. As per usual, lack of blogging can be put down to being well and being busy.

In my defense, I did log on last week to update, but then, something happened, I don't know what, but I got distracted and ran off.

I have one week to go before I submit my final year thesis. How scary. Four years have flown by, and in many ways I feel so much older now when I look back. But most of the time, I feel as immature as ever. Last week I paid child's fare on the luas (passing myself for 15 years or younger) and actually got stopped by an inspector who said nothing, but then threatened to throw the sixteen year olds sitting behind me OFF for trying to fool him. I felt a pang of guilt about that one considering they were probably only a few months over the age limit, unlike my EIGHT YEARS ...oops.

My health has been good since January. Another blip with digestion, which I think I caught early, time will tell. I got two bad migraines last week (bringing my lifetime total to three) where my sight completely went screw ways, so I need to go to an optician and get that checked out. In fact Specsavers sent me some reminder something through the post that same day but ironically I couldn't read what it was they were telling me I should have done.

I lost my diabetes blood sugar monitor for a few months there, so got myself another one and have really worked hard at controlling my sugars. I'm proud to say that's going well. I had my thyroid function checked (at this point, I have no idea why they wanted that looked at, probably to find something wrong with me beginning with the letter 'T') and that was fine.

Last week I won an ipod shuffle. So I'm going to try jogging again soon. Because the shuffle won't be as annoying to lug around as the iTouch is. And that's the only reason why I am not a cross country champion by now, obviously!

So many a grand plan, many things going on, once I hand in this thesis I feel I will have accomplished SOMETHING anyway. I will try and update again next week.

2011-01-11T00:40:00.002Z

I feel a lot better than I did a few days ago, and indeed, this time last week! I'm just tired. Very, very tired. Not in a need to sleep kind of tired, but worn out kind of tired. I think of things like going to get a cup of tea and in my head it takes me seconds to get to the kitchen and boil the kettle. But in reality, my legs and back seem to move so slowly and when I'm walking, it feels I can go no faster.

I feel like I'm getting so much better and then I see myself in the mirror and I look like an old lady! Although an old lady with a normal looking face it must be said; the one which looked pale and swollen has gone, thankfully!

I think the Tamiflu (which I stopped today) or the IVs have left this balm of nausea just below the surface too. So I'll be happy when I finish treatment some time this week. Or happier still when the PICC line is removed. Because then mentally I know, it will mean I am better. I had the whole site dressing changed yesterday and having been cocooned for a month in the exact same spot, it's now really tender to move it in any direction except the one it can stay in for the longest.

While the PICC line is great because it means no hunting for a vein, and things can just be done hassle free, in my head it also means that IVs are a quick option. "Hmm, maybe you need IVs...oh you have a PICC? Ok well here's two, take them three times a day for ten days" kind of thing. Not that that's how decisions are really made but still.

Apart from that, I'm taking this week off college; it's the first time I've decided to take time off like that in advance in my four years. I'm sure I'll regret it next week when I have a mountain to catch up on, but oh well!

Ps: I'm reading A Thousand Splendid Suns by Khaled Hosseini at the moment and it's excellent. It's the second book I've read in about eight years - the one good thing about being sick is it leaves you lots of reading time!

NEVER blogging AGAIN

2011-01-07T01:52:00.003Z

Seriously.

Talk about jinxing oneself!!!!!!

I've felt for a while now that I only ever seem to blog when something is going amiss with my health. Probably because when something is going amiss with my health, I'm generally stuck at home and have tired of refreshing Facebook over and over again.

Anyway my health WAS good until hours after I posted the last day.

Then I went to clinic. Everything on the check in assessment looked good. Had my PICC line flushed, blood taken. Wouldn't be needing that bronchoscopy. There was talk of removing my PICC line. I went to wait to see the doctor and......BAM. Suddenly it felt as though the world had jumped into a freezer. Nothing would warm me up. So my mom (who normally doesn't accompany me on such dates but did so on this occasion in case I was having a bronchoscopy) asked for a thermometer and sure enough within about half an hour, I had developed a temperature.

So I got some paracetemol but just felt worse. An hour later my temperature was still climbing and it was suspected I had contracted the dreaded swine flu. I would start Tamiflu; the PICC line would stay in; I would start more IVs (at home as there were no beds which was fine because the thought of having to say no to every hospital "meal" offered made me feel even more tired) and go home to bed.

At home, I got worse, threw up, temperature persisted, my face felt like it had been punched by a double decker bus, I could only really open one eye, I felt plain miserable.

Then yesterday evening, I began to feel better.

BUT me being the complicated me couldn't ever have things run quite so smoothly.

I had a phone call from my team (who I was keeping in contact with twice a day since ideally I would have been in hospital) to say that my PICC line actually showed a growth of e-coli. I don't really know what that is except it isn't too good. Except that as it happened, the IVs I am on are used to treat that kind of bacteria anyway.

So the PICC line has to come out. But then there's no way they'd get another one in. And if I'm feeling better it means the antibiotics are working. So maybe it's ok to keep it in for as long as I continue the upward trend, they think. I still feel really, kind of weak. And tired. But it's only been a couple of days to be fair.

So what about the swine flu? Well, apparently it would seem this 48 hour drama was actually a line sepsis, which all kicked off when the nurse flushed my line at my initial check-in assessment. I'm still waiting to see if I actually tested positive for the h1n1.

THE END.

...ok well maybe, to be continued would be better!

2011-01-02T23:24:00.002Z

It's been over two months since I've blogged, apologies if you're the one person who still checks in here! I guess over the past year or so, my life has become rather monotonous...while not necessarily mundane; but follows a fairly normal routine, with normal goings on. Which if people wanted to read about, well then they could probably write in their own diaries and read back. That's not to say life isn't exciting - it is - but I'm so thankful and grateful that my life has reached a rather predictable plateau.

My health has been good. Not perfect, but good. I have a much greater control and understanding (and acceptance) of my digestive issues which I felt utterly plagued by in the Autumn.

The only unwelcome health wise issue that cropped up was that I developed pneumonia at the start of December. I became symptomatic fairly suddenly (with chest pains) so luckily got myself sorted rather speedily too. I spent two weeks on ivs, and while I was certainly almost near perfect afterwards, I wasn't *quite* perfect. So I got to spend the holiday season with a lovely PICC line Christmas decoration in my arm, which I have become pretty accustomed to now. Funnily enough, the reason for keeping the line in was because on Tuesday I have a follow up appointment (I think a two week check up?) and if things are funny again, they'll want to do a bronchoscopy which requires a touch of sedation, and they don't want the hassle of finding a vein!

Last week, I picked up some relative of that nasty virus that went around. It only lasted 24 hours, but now I'm coughing again. It's understandable since I don't have a great immune system for shooing these things away. And the Christmas season, whilst not the ideal time to be sick, actually reminds us of how lucky we are to *only* be dealing with a virus. Having a crappy immune system is the price I am very much willing to pay, considering the 50 other weeks of the year I am able to run about as I wish. One must not get greedy!

So apart from all that, I took up a temporary job in December, just for a few weeks which I hope to go back to in a couple of months. I'm also writing a thesis. Which I thought would kind of be like writing an essay; it would take a few all nighters and loads of diet Coke. I think that plan is becoming less and less feasible as the weeks pass by. I'm also in college full time. And also going out. And getting away. And having fun, too.

So yes, setbacks like to set in every now and again. But the trick is working out how to get and do what I want and working around the set backs. Or just throwing a load of antibiotics down to deal with the set backs and concentrating on living life :)

Answer to the Riddle

2010-10-21T20:32:00.002+01:00

Interesting. I had a phonecall from a specialist team this morning and they asked me what was up. I said to these people:

"Well it's interesting, I have no appetite. But I'm frustrated because I'm hungry now from not eating. This *does* make sense, right??!"

"Ah. Sounds like you may be blocked. We'll get an xray done in the morning and just confirm that."

I would estimate that educated guess took about 7 seconds.

I didn't get a patronising laugh either.

I love professionals who are professional.

Riddle of the day

2010-10-19T13:43:00.003+01:00

I'm at a loss as to which bit of this is so confusing:

"I have zero appetite at the moment. I'm really hungry because what with having no appetite, I haven't been eating."

I don't personally understand how someone with a reasonable ability to follow basic logic can find it so puzzling. Unless they like to snicker and laugh and be patronising for a living. Because "well if you're so hungry why don't you just eat, then, problem solved?" is the logical advice after struggling with aforementioned problem for three to four minutes which I received.

Hmmmm.

I'm very busy with reading and thesis and going out and general final year stuff, I am happy to report.

2010-09-07T20:46:00.003+01:00

Thank you to everyone who emailed or facebooked me with advice, it's all been very helpful. Knowledge is power!

The latest results indicate I still have obstruction but am feeling better. Not perfect, but better.

Not this cycle again...

2010-09-03T00:16:00.002+01:00

My lung function was higher than I thought it would be, whoohoo.

Every evening lately (well not lately, I would say a few weeks), I look pregnant (and get bad reflux too)and get very sore and swollen. In the morning it goes away again and I look as flat as a pancake, with a little flab here and there (haven't been to the gym in three months). The last week or so, during the day, I've had no energy. Not necessarily lethargic, just apathetic about everything. I don't feel like meeting up with friends or going for lunch or up for shopping.

So on Tuesday, I explained about the nighttime pregnancy and I was sent for an xray. I was beginning to get fed up waiting in an overcrowded, coughing waiitng room and thought this is a big fat waste of time. I had my xray done (PFA?).

I saw the results. Meaning, even *I* could see that the xray was bad. The last time this happened they showed me my xray and pointed here, there and everywhere saying "You see that there? Oh and there?" and I kind of nodded along, not realllly getting it. But this time, yikes.

But, being having to be a-typical about everything, despite this being a bad blockage, I'm not actually blocked, at all (if you follow). In fact, I wouldn't say I have any problems there at all (if you follow...). I would have put pain and big belly and lethargy and heartburn and intermittent nausea down to a wheat intolerance or something. So I'm back on treatments, hoping they'll work and I will want to be sociable and less awkward again soon. But I wonder if I'm eating too much or something?

If anyone has any advice, please share! I'm sorry for talking about stomachs and such. There are a million reasons why I do, but I am tired of typing now!...

2010-08-16T01:33:00.003+01:00

I'm home from America, eight and a half weeks later. This year, it was camp, New York, Orlando/Miami, Bahamas, Rhode Island and home again. I am beautifully tanned despite everyone denying that this for me would be possible due to my fair hair and blue eyes, but yet again, here I am, bronzifed. Not that that's anything to boast about....

I have a month left until I go back to college. For my FINAL year!

Apart from that, it's all quiet. I'll have to see about going to get all my clinic appointments and blood sorted out. I feel like I have a half chest infection but it could be that my lung function is on its bottom cycle. Apparantly it goes in cycles, so I hit highs like 107% and then it goes back down to 98% ish and then works its way back up again.

That's all.

Updayyyuhtttt

2010-06-09T17:17:00.002+01:00

Got my lab results back, and all was benign, phew.

Did my lung functions, they were 107%, and my weight is steady and *touch wood* my stomach problems seem to have gone and found something else to do for the last couple of MONTHS so I'm still managing to stay off my medications for that...phew.

I'm getting to the gym, on average, 4 times a week at the moment, phee-ewww.

Got my exam results, passed, phew.

I have gone deaf in one ear bizarrely. I knew I had problems hearing the other day, but it wasn't until I put my headphones in and thought they were broken (I've broken two sets recently), so switched them around just to check, when I realised, oh no, the headphones were perfect, it's my ear that's broken!!!

I went to the doctor who looked in my good ear and told me, great news, it's one hundred percent clean and clear. He then looked in my deaf ear, hummed a little bit, said "interesting" and told me it was 100% blocked, he couldn't see a thing. I have never had hearing/ear blockage problems, so it's great timing, because I'm supposed to be travelling long haul on Tuesday, off for the summer, and blocked ears can lead to painful infections which carry symptoms such as high temperatures. Oh and did I mention I have life guarding on Saturday 9-5 and Sunday 10-7? Now what was I saying about great timing?? Oh well, it could be worse; I got a stabbing pain in my stomach last week and panicked it was my appendix!!! Luckily it wasn't, it was just a random, temporary stomach blockage of some sort I think. There's always something. It just means I'm finding myself asking people to repeat themselves several times until it gets embarrassing so I just smile and nod. Only once or twice has that backfired and it turns out, it was an actual question I was being asked. Oops.

Apart from the aforementioned deafness, I'm in the middle of running around like a headless chicken, preparing for travels, so that on Monday (when I leave) I will NOT be running around like a headless chicken, phew. They say if you want something done, ask a busy person. I disagree, I seem to be crossing two things off my list and yet it gets longer by the hour!

Anyway, there's nobody in my house this week, because everyone is away, so it's actually VERY nice and quiet. I went shopping today for some basics for travelling and came home with four dresses, two tops and two pairs of shoes. I need to learn to leave my credit card at home.

The side-effects

2010-05-28T14:23:00.002+01:00

This is more for transplant peoples, just thought I'd share.

I had this dark freckle on my foot. Not really too big, a teensy bit raised, but not what I would class as a mole or anything. I don't know how long I've had it, maybe a couple of years, I couldn't be sure. I was aware of it, especially since skin cancer is a *huge* deal post transplant (Usually, when the UV rays or whatever cause cells to multiply abnormally (cancer) the body naturally fights this itself and corrects it. It happens a lot and without a person ever knowing, but without a good immune system this process is damaged, that's my basic understanding of it!) Anyway, my mom caught sight of it one day and pressed me to have it checked out.

My GP wasn't overly concerned. My dermatologist said he'd remove it there and then for me, except when he described what he would do, I freaked and said I'd think about it (since he wasn't overly concerned either).

So skip a couple of months later, and I'm off to America for the summer. My mom is still pressing me to have it dealt with. So I ring my GP who cannot fit me in until July(!). My dermatologist is the same. I then ring the Beacon Hospital who said something similar but we explained about how I would be away for the summer. Their timetable is to have a consult done on a Wednesday and then any follow up work done on a Friday. So they tell us, fine, we can go see them this Wednesday considering how I will be going away. (When I say "I" phoned and "we" explained, I obviously mean my mom, because she's better at these things than I am.)

So on Wednesday morning, we strolled up to the hospital and the lovely lady doctor saw me and I showed her the offending article. She had read my notes that I had had a transplant so was at an increased risk. I was about to ask her to just look at another freckle I had on my shoulder when she interrupted (and immediately, I was like 'ugh' since I loath it when people interrupt) and told me that, in fact, she would like to do a whole body examination as it was best to see if there was anything else. I loved that attitude. Following the examination (where she found one other suspect which should be monitored) she asked me had I found anything else which I wanted her to look at (she had this magnifying thing that looked like what detectives use when they're inspecting diamonds) and I showed her the dark freckle but she said it was ok.

She then said she felt it was best to definitely remove the thing on my foot. So she went out and rang the plastics clinic and sent me right up. The doctor there went through what would be done and said that he could fit me into his procedure clinic that afternoon.

So that afternoon, I had it removed, which was painless after the local anesthetic. I just can't walk now, but I'm trying very hard to put weight on my foot and getting it to work again.

There are two issues with this story. Firstly, I am extremely fortunate that we are able to afford to pay for all this (seeing two doctors in a private hospital and a GP for a referral letter the day before is NOT cheap). If I had waited until my hospital decided to do something and then gone on a waiting list for a public plastics clinic, that could be months. There is something about that that is not right at all; money shouldn't mean better health care, but yet, it does. We caught this one well in time, but it's so important to not get caught in that position when it's too late.

Secondly, I am going back to see this dermatologist once a year for a check up. I would recommend that all transplant patients do this if your clinic does not offer it. Or just do a self check and make a mental note of dark freckles. Prevention is much easier than treatment.

Summer's a coming

2010-05-14T23:01:00.003+01:00

My exams are over. I am beginning to believe that summer is almost here. My passport arrived, I have travel insurance, I have picked flight dates, I am getting excited. It still doesn't feel real yet, as there are one or two more hurdles to be leaped over and I'm a bit nervous that it is mid May already.

I am (hopefully!) becoming a certified lifeguard in a couple of weeks. Yeah, random.

I joined a gym a few weeks ago, and the day of my induction I went to hospital and spent a few days on IVs and fainted a couple of times. Joining the gym is a traumatic experience.

So I eventually went back the other day. It's a circuit system and I highly recommend it. There's no tricking around on treadmills and bikes, it's weights and stretching and jogging. So far, I have been twice, the day before yesterday and today (my aim is every other day). But I really do enjoy it. However, it would appear my heart rate is a bit higher than they would like. You stop every eight minutes and check it and they have a chart which shows where you should be. They assured me it was probably the medications I am on. I think in reality it's because I am not fit AT ALL. I actually got embarrassed about how high it was (it was pushing 200 at one point), but once you go red on the chart, you take a break. I was actually red on the chart after my stretching, which confirms I am very unfit or that the gym thing for me truly is traumatic! So all in all, I look forward to having my six pack by next Saturday. I'm realistic like that you see, which probably explains my previous success with gyms.

In other 'news', I am browsing post graduate courses at the moment, both Masters degrees and PhDs. Mostly because I don't want to have to go get a job when I finish college and without the rich husband, I can't live my life with maids and butlers, playing tennis in the mornings and golf at the weekends *just* yet.

I found a couple I really like the look of, the selection for one seems very competitive, the other more attainable. Our class in college is *extremely* competitive. To the point where some students when they hear certain useful information will hide it from others. I enjoy the competitiveness because it motivates me to do better, but yet I'm not bitter when I don't do amazing either. I also don't agree with the hiding of information, because that's just a bit daft, but thankfully that is just one or two people.

In final news, and I say this because I have just checked I have stocked up for when this backfires, but I have been able to go over three weeks without any stomach/intestinal medications. And I haven't modified my diet. It makes me wonder is this whole fiasco is stress related. But as I say, having just announced that, I have my supplies ready to go for when I am riddled over in pain on Monday having cursed my luck!

I have just reread that last paragraph and feel maybe I'm being a bit... eh personal! But it's just so anyone reading who might be going through similar things, to be aware that stress can clearly have a huge impact on the processes in your body! So therefore, keep an open mind when assessing the need for medication. Not that I am advocating NOT following medical advice or anything....

I should be studying, volume 423535

2010-05-04T23:47:00.002+01:00

It's 11.47 PM and I should be studying for tomorrow's exam. But I started getting distracted and thinking. In our class we had this competition. It was an international competition, but everyone in our class had to enter it. Our group came joint first with another group, but the other group were picked as winners and got to travel to Atlanta, Georgia for five days to go to some conference. It was very cool, actually. Our group were disappointed obviously, but not really THAT much, like we weren't that bothered by it, but would have been delighted had we won nonetheless.

But the group that did win had a lot of problems. Firstly, they had become so strained that they weren't on speaking terms by the time they left to go to America. And they had to spend the trip in the same hotel room. One said that while she was happy she went, it was the week before exams, so she wasn't too keen on being away not being able to study. Which was a fair point.

And *then* the volcano went and erupted and caused chaos. Instead of returning to Dublin on the Sunday, they were stranded - in Boston - until they eventually managed to escape on the Friday (I think?).

So I was thinking, how dreadful would it be, the cost, the fact that the group were having problems, the lack of study. And then it occurred to me, if it was ME, I would have run out of drugs. I usually bring about three days' extra with me anyway, but it would not have been enough.

So then, because I'm "studying", I googled the cost of *one* of my drugs. On this website, where it offers great deals, it would charge €1580 for a month. Now despite the fact that with that deal, I get 12 Viagra tablets, I couldn't imagine the stress of trying to sort that out in America.

It's really true, things happen for a reason!!! ....now back to studying...

The Community Nurse part II

2010-04-25T20:26:00.002+01:00

So there I was sitting in my kitchen, thinking about my phone sitting alone in the dining room, wishing I could think of some excuse to make the community nurse hurry up and leave. That seems a bit unfair, she was a perfectly pleasant lady but it always unsettles me slightly when medical people don't really....'get' it. By 'getting' it, I mean references which I would think would be fairly basic and standard concepts within the medical field. And when my trust in them begins to waver, then I internally begin to panic about whether they are fully able and qualified to do the job they came to do, in this case, change a dressing on a PICC line in my arm. Which runs near my heart. Which must be kept sterile at all times. So the conversation continued...

Nurse: "So the diabetes, that came after a surgery?"
Me: "Yes my tr-"
N: "-And what surgery was that?"
M: "A transpl-"
N: "Oh a transplant, I see it's written here! What type?"
M: "Lungs"
N: "Just the one lung, was it?"
M: "No lungs. Two."
N: "Ohhhh! And what was that for?"
M: "Well I have Cystic Fibrosis"
N: "Ohhhh! Cystic Fibrosis? And was that to cure it, yes?"
M: "Well, no. Like I don't have it in my lungs anymore, but the rest of my body still has it, so I'm not cured."
N: "Ohhhh I see! And how long have you had Cystic Fibrosis then?"
M: "Well, it's genetic. So I was born with it. "
N: "Ohhh! So a long time then, says you!"
M: "Yeah. I was diagnosed when I was six months old."
N: "Ohhh! Six months, so you've had it a LONG time then!"
M: "Well, yeah. I was born with it. "
N: "And when did you get the transplant?"
M: "Four years ago, almost."
N: "Ohhh! And how long were you waiting for it?"
M: "Emm about si-"
N: "For ages I bet!"
M: "Six months?"
N: "Oh that was quick!.... Oh you have a dog! Oh I never even noticed him. Oh isn't she gorgeous?"
M: "Yeah, that's my dog, he's very sweet"
N: "She's like a fox. Or a deer. Or a doe-a-deer! Oh will she bark now?"
M: "Oh no, he never barks, ever really."
N: "Oh I bet she'll bark"
M: "No, don't worry, he doesn't bark"
N: "Oh she'll make strange for me I bet!"
M: "No don't wor-"
N: "- right so I'm here to do a dressing then, so let's see, why do they want me to do that? Where is it now? Oh look at the eyes on her [the dog]..."

And so it continues. Turns out she doesn't have the right supplies, so I agree to go the pharmacy later and buy them. She has what will make do in the mean time. I become very worried that the pulling and prodding will make the line come out, so she agrees to hold it and I remove and dressings. Of course, this is all done through some more bizarre conversation, but seeing as I am studying for exams right now, I haven't the time to blog about it!

Thankfully the IVs are well in the past now, my lung function is back up and beyond where it was (I think about 104%) and I'm feeling much better! : ) I just have to concentrate on passing these silly exams (anyone know anything about statistics, neuropsychology or usability engineering, if you wouldn't mind disguising yourself as me and sitting my exams, it would mean hours more sleep and three less exams for me to do!).

My parents went to the CF conference this weekend, and so when I get a chance I'll blog up all I learned second hand from them.

2010-04-11T22:49:00.002+01:00

Part II of the community nurse entertainment will continue shortly (it does get worse). At the point where I left off, I was planning my fake phone call and then realised I left my phone in on the dining room table. Fail.

In the meantime, we had to put down our lickle dog today. He was about 14/15 years old (a rescue dog so I'm not sure exactly). Although he was 'only' a dog, we miss him so, so much. It's amazing the overwhelming noise that silence makes.

The lovely community nurse part I

2010-04-06T15:37:00.004+01:00

My lovely community nurse called today to change my dressings. She was actually very nice and friendly, bless her. This is part one of our converstation.

Nurse: "Hi. Ok, just need to run through a few things before we start to change your dressing."
Me: "Ok"
N:"So how long are you a diabetic and how are you finding your sugar [control]?" (reasonable question, because medical people need to know these sorts of things)
M:"Emmm...four years? Yeah, quite good"
N:"Oh four years is it? And how are they giving you insulin" (I began to wonder if she thought I was just diagnosed and I had something *in* me that gave me insulin that she was here to look at)
M:"Through injections, in my stomach like"
N:"Oh, oh, I see. Sub-cut, very good. How long are you doing that?"
M: "Well since...fo-"
N:"-forever, right, ok, yes, forever."
M: "Well...four years"
N:"Oh right. And how do you find that?"
M:"Grand"
N:"And are the sugars managed well?"
M:"Yes, quite well."
N:"And have you always been diabetic?"
M:"No. Just since four years ago"
N:"Oh right, just four years. So are you used to it now? I suppose you are, says you!"
M:"Yeah it's ok"
N:"And how did they find that out? Just by chance?"
N:"Well, I had surgery, and they routinely were checking them and they found out. I was on really high steroids at the time so that caused it"
N:"OHHHHH steroids will do that! And has it gone away now?"
M:"What the diabetes?"
N:"Yes, is it all OK now?"
M:"No. I'm a diabetic"

(begins to to plan fake phonecall!!!)

Happy Easter!

2010-04-05T23:02:00.002+01:00

I hope everyone had a nice Easter. I ate a Crunchie egg. And then I ate another Crunchie egg that someone left up on a shelf in the kitchen. It's generally survivor of the greediest in my house so unless you hide things, they disappear when you leave the room to do anything. I once came into the kitchen looking for microwave popcorn but there was none in the cupboard. I asked my sister was it all gone and she shrugged. I then made a comment about how greedy people in this house were. Then twenty minutes later, I smelled microwave popcorn, so I dropped everything I was doing, dashed back to the kitchen and saw my sister standing beside the microwave. I asked her where she found that bag. She pointed to *another* cupboard, which we *never* use for anything. She moved it a few days earlier so she could save it for herself. So ever since then, I keep a close on the income of food into this house, I'm pretty sure my talents could earn me money as a card counter in Vegas someday! :)

And also, turns out I have a community nurse (never knew that!) who, turns out, is coming tomorrow to change dressings on my arm. I have no idea what time, I'll probably get up early and wait for her to arrive and then pretend I am important and I have somewhere *urgent* to be when/if she arrives. Just to entertain myself really. I might even pretend to take a phone call and be all "Ok, I'll be there as SOON as I can". And hope nobody actually phones me when I'm pretending to be on the phone...*awkward*. Actually I do have work, but it's not that important if I show up or not. And I actually was planning on going to my library to study too. Anyway, I just hope I don't make a twat of myself and faint on her!

Anyway, nothing else new going on. The past week or so I've been on holidays, I have laid out all my books on the dining room table so it looks like I'm studying. Actually, I have discovered Survivor: Heroes vs Villains is on so I've watched every episode to date. And then I spent about two hours watching clips from "The Room" on youtube. Seriously, if you have nothing else to do, watch a trailer for this film. HIGH-larious. "Zis is naaacht ok!"

Plans for easter

2010-04-01T21:20:00.004+01:00

I got a new phone. My old phone which had a bad habit of breaking, broke, and so I was entitled to a new phone. It's the Nokia E63 which is like a blackberry but available on pre-pay plans. I feel very pretentious carrying it around; I only wanted a working phone but in my defence all the basic basic models were sold out. Anyway, this thing has wireless Internet on it so it's very useful.

On Tuesday I went to clinic and unfortunately my lung functions had fallen over 8%. I suspected that was the case as I picked up some funny thing in college a couple of weeks ago and had been wheezy since. Having nightmareish veins which may as well be painted on to my arms, they had to put in a PICC line (a bigger line which goes into a large vein and runs toward my heart) for IVs. Administration wise, an appointment is faster dealt with if you're an inpatient, so I went in for "one night" to have the line put in. Except it took them a while to get the vein to put the line in and once they did? I fainted. Passed out. Embarrassing to say the least. Especially when I heard someone shout 'She's fainting!!!' UGH. So that earned me another night. And then yesterday? Same thing happened again. That earned me a heart scan. And another night. To be perfectly honest, I think it's just the pressure of the line or something technical, so nothing seriously wrong. Thankfully my bed was needed today so I got to escape.

My plan for the rest of my holidays include eating, sleeping, drugging, sleeping and studying. Needing IVs is a bum, but it couldn't have come at a better time! The two weeks coincide with my Easter holidays perfectly. Plus I'm just grateful I didn't book last minute to go away anywhere! Phew! The IVs tend to make me really tired so I have plenty of rest and reading time to manage with. Plus it gives me plenty more *geeek* study time too as I have to be up at 7am and stay up until 12am. Yes, *geeek*. It could always be a whole lot worse! And I feel fine apart from the drama.

PS: thanks Sheryl for your msg :)

2010-03-27T23:48:00.002Z

Busy.

I took a break from doing college work for about a week, that was nice. I am a calm speaker when I have to do presentations and then i had to do one last week and got SO nervous, like when your speech quivers, so embarrassing. I think I'm tired!

I'm about to begin a two week binge of study as I'm on my Easter holidays and my summer exams are *weeks* away. A lecturer called me rude the other day - *ouch*. I don't know why, I barely have time to talk to her/them in between all the moaning that I have to listen to from her/them!

Stress.

I think I have finally mastered the solution to my stomach problems (if you can ever master something with so many variables!). I realise I have mastered it once I stop taking the solution and recognise the need to start taking it again.

Busy.

Happy Easter!!!

Updates from less stress more success

2010-03-02T19:57:00.002Z

Life is good. I had a couple of episodes last week where I fainted in my sleep. Google told me this was possible, as mad as it sounds, and it can be a symptom of sleep apnoea. Luckily, I think I was beyond exhausted and a little run down at the time so I think they were collectively once off. Imagine! What a random experience.

College is busy, busy, busy again. I am busy doing extra curricular work at the moment.

I read this on a blog somewhere about study and control. It was interesting. I can be incredibly lazy and procrastinate-y, but I love to do well. Not necessarily insanely competitive (I swear everyone believes I'm genuinely competitive) but I feel like I'm a waster if I don't aim for high grades. Over the years, I really feel like studying and working is something I have a control in.

I was incredibly ill when I sat my Leaving Cert. I was 17 and it was the first time I thought I might not make it home. It was a bizarre time in my life where I wasn't really ''with it'' enough to acknowledge how ill I was, all I wanted was a dark room and to sleep permanently. Luckily, I came through it, but also began to turn the tide on that nasty infection a few days before my first exam. Of course, I sat 7 of the exams in hospital, slept in between all of them, and honestly did no study. The thought of doing that nowadays would make me throw up- being so unprepared!

I got good results despite the circumstances, I mean not fabulous results by any stretch of the imagination, but good, enough to get my first choice in college. The right things came up on the papers too, which really helped! But I always felt sort of.....not embarrassed, but I wish I'd done better. Everyone congratulated me, but I felt I could have done better.

And now I have the opportunity to do better, to learn, to have a free college education, to be taught by very intelligent people, some experts in their field, some whose career paths I would LOVE to follow, I feel like if I don't seize this opportunity, then I'm wasting it.

Now back to this research proposal due soon....

Procrastinating Observations

2010-02-21T20:39:00.002Z

I never do so much learning (or blogging) as when I have a deadline looming. Surprise, surprise, I have to argue for the death penalty in a mandatory debate on Wednesday, and as such am supposed to be looking up information which backs up my point. To date, I have found out one of my friends has upgraded her farm on facebook, another has been rewarded with mystery chickens and about four of my friends are updating their statuses from around the world. So not much the death penalty then! Other random useless information:

1. Some people, however, simply do not exist on the internet. Not that I am a serial stalker or anything, but seriously, the mind boggles.

2. I am embarking on a diet. I think it's time.

3. There are not enough hours in the day, and yet I seem to accomplish so very little some days!

4. Thomas Harper Ince was a big hot shot in Hollywood in the early 1900s-20s and then he mysteriously died aboard his yacht. On his birthday. I mean, of all the days in the year, jeesh! Allegedly Charlie Chaplin was 'aving it off' with his gal. But whether it was murder, foul play or simply a sudden death has been debated ever since.

5. Adidas was founded in 1924

6. The guy who was in a coma for 23 years who supposedly came alive again a couple of months ago and began communicating, is in fact, still in a coma after 23 years and is not communicating after all.

end of midterm

2010-02-21T01:28:00.001Z

I can't believe it's the end of midterm already. How time flies! Here are some observations:

1. All people with a size 5 shoe are wearing black knee high boots at the moment. Because, let me tell ya, there's none to be had in a size 5, anywhere. Oh sizes 3,4,6 & 8 but no 5. An occasional 7, mind.

2. Is a problem still classed as a problem when you can live with it despite the symptoms? Yes, that problem is lurking again. I should really stop saying how marvellously I recovered. But, I can live with it for the moment.

3. Manchester is a cool place to live. Seriously.

4. Tiger Woods is a tool bag. And the world is one collective tool bag for giving a care about his issues.

5. My car. My new car. Sigh, sigh, sigh. It has developed a habit of the back right door flying open while in transit ("OMG MY DOOOR!!!!)". Oh the passenger door has the same habit ("OMG MY...EH...OTHER DOOR?..!!!!"). I DON'T EVEN HAVE CENTRAL LOCKING!!!! Meaning, these two problems are not connected, just coincidental! I swear whoever invented the car (google that and find a definitive answer) put in the blueprints "This will be a marvelous mode of transport for everybody. When the world becomes equal, even a woman will be allowed to operate one. Oh except the following people:" and my name was top of the list. That, or the cars I buy have decidedly weird previous owners! Still, we shalt not complain.

6. Total number of original body parts working today: -1. I am going to sleep until Monday I think.

2010-02-08T00:53:00.002Z

So it's been a week. Or over a week? And I'm thrilled to say I am SO much better.

When I was discharged after the four days, I certainly felt better, but very tired. And then the weekend I spent feeling horrendously ill. But yet I knew the original problem had been fixed, so what was making me feel like I was chronically hungover? I lasted until Monday before I had to put a call in again.

So, following another xray and an abdominal scan, it turned out the new medications I was put on were the cause of the new problem. This was confirmed by the fact that my xray (thankfully) came back as ok and once I stopped taking all these new potions and pills, I felt miraculously better. I haven't heard back about the scan, but I chatted away to the technician during it, and it would seem it looked good. It was funny, because during it, she kept asking me to breathe in and breathe out and used my first name the whole time. Then she went quiet and said 'ok, just take a breath there, pet' and I always think people are nicer to you when they feel sorry for you, so it worried me what she might have seen, but apparently slightly enlarged abnormal vein(s?) seen in my liver is normal considering my medical history. Peeee-hewwww! And the fact that my team haven't phoned me yet about it either says they are sick to death of talking to me, or it's all ok. I would say it's most likely a combination of both.

So the newest remedy in compete contrast to last week's new regime, is to stop ALL the new medications. AND a couple of others that I was also on. I was able to keep up going to college and this week is the final push to midterm or "reading week" as they *insist" we call it. Not that I'm doing much reading when I go on my holidays!!!!! And apparently if 'they' hear that that's how we're doing that 'they' will cancel the reading week. I don't even know who 'they' are and why 'they' would be hanging around listening to my conversations. Or reading my blog...

Thanks for all the good wishes recently too xx

2010-01-29T23:52:00.002Z

One night turned into four days. Four long days. The problem is sorted (they hope) but a lot of the symptoms have not. I am now on four new medications and cocktails and have been let home.

They say these stomach problems may be a once off or a totally new stage in my life, one which I will have to get used to and look after. So one or the other. Got to love vagueness!! Of course I would love the former but am happy, or content, to settle with the latter.

Anyway at the moment it sort of feels like I sort of know what I'm doing, or supposed to be doing. A bit like going through a forest blindfolded and carving out a trail that I can follow.

Everything could be a LOT worse and four days on a transplant unit is a sobering reminder of that.

In the meantime I have the weekend to get used to a slightly altered medical routine, observing myself and observing my dog who has now developed a habit of fainting if he gets too excited. Interesting....

2010-01-26T18:42:00.003Z

There is nothing like a entire night spent out of bed in pain to realise a 'stomach problem' really can only be avoided for so long. A trip to the hospital after college has resulted in me being kept in for tonight and potentially tomorrow while they work on treatments. Well actually, the treatment for the stomach is not that complicated or complex, it's just that they want to observe me over night. I'm not going to complain, if they have nice painkillers in that building which will result in a night's sleep, I will gladly be the first to sign up.

I also notice when I talk out loud to other people (and not just to myself) it's almost like I can pieces of a jigsaw fall slowly into place.

"So this pain came on last night?"
"Yes, and I never want to feel it again"
"Were you feeling ok yesterday?"
"No, I was a bit off yesterday....actually all weekend...actually I had bouts of pain on Friday too when I was in the library...oh no that was Thursday come to think of it"
"So you're nearly a week in this state?"
"Well not quite as bad as last night, but, yes, I guess"

Anyway, my ipod is charged so I am off for some rest and recuperation.

2010-01-25T23:37:00.003Z

I got a new car. A second hand car but a new car to me. I then had a new radio cd ipod thing installed. It means when I put a cd in it actually plays and when I want to eject the cd it isn't swallowed forever. I also discovered the 'City' button on the car which is supposed to be used to make parking easy but it also aides taking corners in 5th gear at 40 m/ph. Good times.

I have been having a few problems with stomach pain lately of which I cannot figure out the cause. I'm blindfolding myself and picking tablets at random each day to see if they help (not really, but essentially that's the selection process) so far with minimal success. Luckily the pain and sickness aren't there the whole time (in fact thankfully a lot of the time it just comes and goes) but when it arrives it makes me really tired too. If ever there was a good time to get insomnia, this would potentially be it.

On other medically fronts, I'm still taking Roaccutane and that's going well so far. I'm still only on half dose and it seems to be working very, very well. I don't know if that's because skin issues are generally easier to treat the second time around? Because I really don't think I'm going to need a full dose in a couple of months, but time will tell.

It must be pointed out that I am extremely well aside from the aforementioned problem(s), and you can never be more thankful for that!

And despite it being January, I am already planning my summer! I am trying to strike the balance between suitably geeky activities and fun ones too. It's all about planning for the future while enjoying the present.

Can't beat good timing...

2010-01-12T18:50:00.002Z

I took my first dose of Roaccutane today. And we've lost water on our road now. NO WATER!!!

2010-01-11T22:50:00.002Z

About three years ago I went on Roaccutane to improve my skin. The drug is a working miracle. And it worked. Until this past August, I noticed my skin began getting bad again. I gave it four months before deciding it wasn't a 'phase'. I went back to my dermatologist today and he prescribed me some more. Yay. I think it's going to be another 180 or so days of treatment. He said that it's a harsh but brilliant drugs, and for nine out of ten people it works first time, but there's always that 3% of people who need a second round (not sure about his maths there but anyway...) and I fall into that 3%. With my history of medical minority lotteries I seem to win, this doesn't surprise me.

The drug is a strong one, and stops your body producing any oil at all. So the risk of side effects is long. And to even get a prescription for it, I had to pass a pregnancy test! And you *have* to go on the pill with it, it's pretty much a legal requirement. Too bad, I fell into a minority of suffering a dangerous side effect of that one too! (I swear they should just post my photo at the end of those warning leaflets and say 'go ask her' for the rare side effects). It also means I have to get my hair done this week before starting because your hair goes crazy dry on it too. Inevitably I will have lots of people offering their own solutions to their skin problems when I tell people I'm on this. Kind of a "what would you be wanting to be on that for? My auntie Josephine always swears by grapes before bed time for her skin" etc, etc. Akin to telling someone your drive took 6hours and they respond with, "did you know it's possible to walk and you'll still get there?"

But I digress. I am vain. I like my skin and my hair. And I'm impatient and this drug works. Or it's supposed to work. Fingers crossed!

FREEEZE

2010-01-08T15:35:00.003Z

Most of the news at the moment is dedicated to the "big freeze" that's going on. My flight home from London was cancelled last week (I did manage to get home later) and when we arrived, what we saw was a scattering of frost. To be fair it has got a lot worse since, but nothing on the scale of the UK or anything, just a LOT of ice.

I was busy during the week saying how I felt Ireland really went to extremes by way of practically closing down due to the ice; I had all of two lectures this week with about 10 people showing up, and the rest were cancelled. It was only ice after all.

Of course, that is, until I went out to my car to get to college at which point I got left with an imprint of my phone on my ass in bruise form. Our driveway is on a slope/hill. I went to put my hand out to open my car door, and the next thing I knew I was thinking "Oh my, I am falling!". My feet left the ground, I was momentarily frozen mid air, and then "clump" "crash" "bang", I was down. I was stunned and unbelievably embarrassed. I popped up and looked across the road to make sure there was nobody gawping over (there wasn't, but you can never be too sure - I once saw a neighbour fall off a ladder and I can bet by the way he reacted he was sure nobody had seen).

If my fall had paralysed me, it wouldn't have mattered, I sprang up and ran back inside to gather my laughter. To add insult to (actual) injury, I was wearing a big black puffa-jacket, and no hat, so I probably looked like a female Mrs Blobby with wild hair going everywhere. My brother came thundering down the stairs thinking I was having a seizure (no joke), turns out my laugh is slightly abnormal.

Anyway I eventually went back for attempt two and managed to keep both my feet on the ground this time. Although I'm sure I looked like a mad person laughing to myself the whole time. Later that evening my bum cheek hip area was naturally rather sore and when I looked at it the mirror, a perfect black, purple rectangular outline could be seen where my bum went down, phone in back pocket. In fact, if it weren't for the jeans I'd been wearing when I fell, I'm pretty sure you'd be able make out the 'LG' logo such was my bang!

Keep safe out there!

Sandy update

2009-12-28T16:35:00.004Z

We brought little Sandy down to the vet on St Stephen's day to be put down. He was miserable as could be and we reckon he must be over 12 years old (although he acts and looks like a puppy). When we got there the vet said his temperature was sky high and he wanted to get some IVs and fluids into him as well as an abdominal scan. It all sounded a bit much considering they were looking for 'growths' and the like in his stomach, but sure Sandy is 12+ so even if they find something is it fair to put him through surgery etc?

ANYWAY, they took him away (cry!) and told us they'd phone in the morning. They phoned and said the scan had found nothing but he was still very ill. So they'd give it 24 more hours and then decide what to do.

Today we got a phone call saying his temperature was normal and he was back to being fine. I swear that dog has nine lives!!! It's been horribly lonely without him around the house, and whilst I acknowledge that he is "only" a dog he still has a major presence in our house!

I don't know what's going to happen next but fingers tightly crossed he will be ok.

Of course this makes me think of people who are ill this Christmas, and my thoughts go out to all the families who are dealing with difficult human situations right now.

Merry Christmas...and lucky socks

2009-12-25T14:33:00.003Z

It's the post morning Mass, pre afternoon snack time, and I'm uploading my new CDs on to my laptop so I thought I may as well pay here an ole visit. And, well.... I didn't get a car. Yet. I still have my fingers crossed...ahem.... I did receive lots of equally nice things though. My sister, the copycat, managed to buy my brothers and my mom the *exact* same things as I did. Only she bought hers up the north so had no way of returning them (although I suspect she would have found another excuse if she had bought them down the road). Luckily, because I ~~am extremely nosey~~ like to make conversation, I discovered this a few days ago and managed to change mine. And nobody had to know. Until now.

The sock factory must be very grateful for our family this year, I think we are responsible for at least half their profits this year judging on the number of pairs of socks that we all got. I think I alone got 12 pairs (no joke). And then bizarrely, last night I was coming back to my car after visiting a friend and I stepped on this Kenneth Cole bag that was beside my car door. Only when I stepped on it, did I realise there was something inside. I was a bit dubious about picking up what was essentially a piece of rubbish from the ground (not that I don't care about the environment or anything..) but luckily because I ~~am extremely nosey~~ am rather curious, I bent down and peered inside. And lo and behold, there were four pairs of socks!!! New socks I might add. So I instinctively kicked into Jessica Fletcher mode (without the murder) and thought if I could find the receipt, if it was paid by credit card, there might be a name or some clue of some sort. But alas, it was paid by cash (who would spend €20 on socks???) and it was purchased a week ago :( So not entirely sure what to do, I put the socks in my car, left the bag back on the ground and brought them home. I was told by my family to give them to my brothers. So that's what I did. They now own about 18 pairs of socks each, two of which are luxury wool socks.

In order to ''pay it on'' I think I'll go give some money to charity or something.

On a sadder note, my doggy is not so festive today. We were going to bring him to the vet to "say goodbye" but he seems to have perked up a little bit but unfortunately it doesn't look like he'll be with us long. I got a present from him today too, a Topaz gift card, seriously. We were joking last week, because the Topaz gift cards were being advertised on the radio. And I was like, who on earth would buy someone a gift card for a GARAGE?!?! It's like giving someone money...only unlike money, they can only spend it in a particular shop, in this case, a garage. Well obviously my Sandy didn't hear the jokes!

SNOWWWW!!!

2009-12-21T00:42:00.003Z

Has not come...yet. Quite frankly, I'm content without. For two reasons.

1. My car doesn't start when it's cold outside. At all. So I do not relish walking in the snow for a bus. (Still have my fingers tightly crossed for a new Audi for Christmas though ahem)

2. My college is about 3miles from my house. It takes about 20 minutes to drive in the morning, 25-30 on a bad traffic morning. Last year we did have snow. And the whole city came to a complete standstill, literally, nobody knew how to drive. So it took me 3 hours and 45 minutes to get home from college. And I think that snowfall measured about 2.5cm.... !!!! Seriously, and people freaked out.

So while I'd love a white Christmas, I'd be happier with my Independence and my ability to drive quickly!

2009-12-06T00:23:00.002Z

Oh dear, another couple of months have passed and no blog post. This is a good sign though. I am incredibly busy with college and work and life and *thankfully* my health is great. *Clunks head off wooden table here* I am back to clinic for bloods on Monday, but I think I have made it a year without IVs and about 6 months with no oral antibiotics. The only trade off of this is that I have no anecdotal stories to tell you about hospital life or appointments and, weird to say, no even complaints, imagine!!!

Whilst I was away this past summer, one of my doctors left. One minute he was there and then *poof* he was gone. And now one of the transplant nurses is going too. The good people seem to be dropping like flies in that madhouse. It's true to say you don't know what you have until it's gone. Despite this nurse only ever managing to successfully taking my blood once the entire two (three?) years she was there, she was definitely a good 'un. She'll now be teaching the nurses of the future something about being nurses of the future. Bah humbug!

We get our Christmas holidays start this Friday and I can not wait! My brother (the BFG) comes home from Australia/the rest of the world next week. My car has also developed this attitude whereby it does not start if it's too cold outside. I'm serious. It means I now check the weather every night so I can make plans of how to get places the next day, ie if I need to take a bus. Ridiculous. In reality however I say 'bus', but during the day, there's usually a car in our driveway so luckily I've been fortunate to borrow when my car has frozen over. But I'm more concerned about going out somewhere in my car and then it having a hissy fit and refusing to take me back home. And my Dad does NOT like the prospect of lending me his 2L turbo engine car; he prefers to have either my (multiple car bumps - admits she'd fail her test today) mother drive it around so I can have hers, or for it to sit wasting its life around in the driveway. The fact that I barely peep over the steering wheel is of no relevance to the issue. Or the fact that I'm a fan of speeding while making 'vroooom' sounds with my mouth and cackling wildly.

So to conclude, I have my fingers crossed tightly for a new car this Christmas. My dad nearly choked when I asked for an iTouch because of the cost, but I know with his logical thinking will mean he will have no qualms about spending a small 20k or so (I want a reliable car this time after all) for his darling daughter.

Observations

2009-10-26T17:59:00.002Z

So I'm continuing to put on weight (I've put on half a stone since September), but if you know me at all, you'll know I'm not bothered by this in the least. In fact, I have space to put on another stone or two anyway, and as it is I'm the heaviest I've ever been.

Only the problem is, I seem to have developed a kangaroo pouch with this new found fat. I picked up some delectable items when in Topshop in London last week which really complete my wardrobe but unfortunately they are as good as having a bright flashing arrow that says 'Pouch, pouch, pouch' pointing to my stomach. Or, even worse when you compare the pouch to my skinny arms, you begin to see 'baby, baby, baby' or 'bun in oven, bun in oven, bun in oven'.

So last night, the following conversation took place:

"Mom, look at this fat I have here now"
"Oh that's not fat"
"Yes, it is, look at it, ugh it's fat"
"No that's just muscle"
"Eh, no that is NOT muscle, it's anything BUT muscle"
"Oh yes, but that's where your muscle should be"
"So basically it's just fat!!!!"
"Well....until you tone it up".

*Sigh* Does anybody know how to get a four pack? I used to have one years ago, it was the side effect of a 18year old chronic cough. I'd like a silent method this time.

I am back and I am alive

2009-10-22T22:49:00.003+01:00

I felt since this is still viewable to other human beings, I should make an effort to update it again. A LOT has happened since June 11th (the last time I blogged....not just some random date that popped into my head...).

I went off to America (West Virgina, to be specific) and worked as a camp counselor (American spelling because I can't spell counselllourlourellr) and headed their drama department. To say it was a fantastic summer would be a great understatement. It was amazing. I have made friends for life and saw places and experienced things I never even dreamed of. Whilst I don't know if I will return next summer yet, I will treasure those memories forever.

I then travelled to Washington DC, Las Vegas, San Diego, LA, San Francisco before pit stopping in New York on the way home. I arrived back to rainy Ireland just shy of two weeks before college restarted.

Oh and between all of that I had a brief affair with swine flu!!!!! Well, type A flu at any rate which was never confirmed swine flu but my hospital in Dublin seem to assume it was as it's rare that one would just randomly pick up flu in the middle of the summer. To be fair, I was extremely lucky as whilst about a third of the summer camp turned into shivering, vomiting, zombie like children, I ran a low grade temperature twice, then got a dose (or ten days worth) of Tamiflu and I was as right as rain. Of course, naturally the story is a LOT longer than that but since I'm doing an update here and not a 'so then I went to the hospital where I was put into a hotel like room and had amazing and constant room service, an en suite, my temperature checked by staff but not like the people in "Grey's Anatomy" which saddened me somewhat but then again I was very much bedazzled by the fact that I had my own bathroom and a tv controlled by my bed so maybe the intern was having an affair with a consultant but I never noticed and oh yes I only had to fork over $3000 for the luxury but my insurance covered that except THEN I got billed an additional $260 dollars as a late fee when I got home and then I panicked because I feared I'd never be allowed set foot on American soil again but it was ok because the insurance stepped in and whisked it away' kind of update. (PS: How do people survive in that country with insurance is beyond me!) But I will do one like that soon.

And seriously, apart from that I've been *touch wood* very well. I blew my highest ever lung function a few weeks ago (105%) and have another clinic next week. I had to fill out a 'satisfactory scale' thing on the clinic the last day I was there, and I bet they were overjoyed when I asked for extra paper. Or maybe they just thought I was a bit sad since I'm sure most people just tick the boxes and get on with it. I chickened out handing it to anyone though so just left it on the desk and ran away so I'll be interested to see what they say!

So yes, my life these days consists of college with early starts, a broken car which fails to start, a mother with a broken foot (well it's better now), a design competition with the prize of going to Atlanta, Georgia in April, my new Internet radio which I listen to BBC radio on, my dog who I sat on yesterday and still feel guilty about but doesn't look *as* squished as he did (what can I say, a sandy coloured dog on a black couch can easily be mistaken for a corner cushion).

And that's it. For now.

This is a pic from the day we cycled across the Golden Gate bridge in San Francisco to Sausalito and back.....16 miles. Beautiful!

2009-06-11T13:26:00.003+01:00

Phew! Again, it's been a while. A couple of weekends ago, I completed the 10k Mini Marathon, which was fantastic. I did absolutely NO training, and was by far the most unfit in the three years I have been doing them. This clearly didn't affect my time, but the pain in my body for DAYS later was obvious!

Whether the mini marathon and overall nice weather we have been enjoying lately (with the exception of the tropical downpours - gotta love global warming) have had any effect is unknown but my lung function went up a little bit in clinic the other day! It had been going down ever so slightly (nothing significant) and then began to come back up again. It now stands at over 100% again, can't get much better than that!

These next few days will see me panic and plan as I head off for the summer. I have the most important things done I think, although knowing me, it's very possible i could turn up to the airport without my suitcase.

I'll stick up another (proper) blog later. In the meantime I have important commitments this afternoon such as Home and Away and Ellen to watch. I think I am VERY well suited to this 'free time' malarkey really!

2009-05-30T21:23:00.002+01:00

It's been a nice couple of weeks since I finished exams and it has been manic! This weekend in particular has been a scorcher and as I was bag packing in Marks & Spencers this morning to help fundraise for my friend's upcoming trip to Malawi, the amount of BBQs and BBQ food that I packed made my mouth water.

On Friday I was invited back to my paeds' hospital to the opening of a teen recreation unit. It was wonderful to see so many staff members again, many of whom have been there since I was very, very young; some I have seen progress from student nurse to staff nurse and I can remember many of their first days. So to say it was weird how time flies would be an understatement. I am very much looking forward to my 5 years post transplant party (2 years away!) to see them all again :)

On a sadder note, I found out today that my first doctor in Crumlin passed away. She wasn't a CF doctor but my parents decided early on upon learning of my diagnosis that they would rather stay under her care despite this. I was under her care for over 12 years. She was a truly wonderful lady.

My New Camera

2009-05-15T00:09:00.007+01:00

My dog was the subject of my new camera. No, I wasn't grabbing his neck to stop him moving whilst I screamed words to that effect as I tested my camera. I was merely petting him. At the same time as I took photos.

He then ran away and refused to look at me. He ignored me. :(

When he realised I was taking photos again, he refused to look at anything at all and shut his eyes. I resorted to begging him to please play along with silly old me, and pull a nice face.

This was his idea of a 'nice face'. (Funnily enough, I can do this too.) I explained calmly that that was NOT WHAT I MEANT BY A NICE FACE AND THAT ALL I WANTED TO DO WAS TEST OUT MY NEW CAMERA AND COULD HE PLEASE JUST DO ONE FAVOUR AND ACT LIKE A NICE MODEL AND AT LEAST TRY TO ACT PHOTOGENIC AND WAS THIS REALLY TOO MUCH TO ASK?!?!?

I think that just totally and utterly confused him.

Examinos

2009-04-28T00:31:00.003+01:00

In less than fourteen hours, I will be sitting the first of my six exams. I stress about exams so much and yet, to balance that, I actually do very little study. It sounds terrible, but because I know that I've already practically passed most of my subjects through continous assesment, I just don't have the panicking motivation to kill myself studying. Just the panic that I'll fail.

Last year, I walked out of one of my exams with the sickening feeling that I'd failed terribly. I got into the car, and having promised myself before that I'd never get upset about something as trivial as an exam, I began to feel a bit sorry for myself. I then turned on the radio and a song came on that my friend Barbara had played at her funeral. I was reminded that there was so much more to life than getting worked up over one stupid exam - one that could be repeated. By some miracle, I actually ended up getting a B+ in that subject, so in reality, there was very little to get worked up about in the first place.

But naturally, here I am, panicking again. Fretting. Before I turned off my laptop tonight, I went to my Yahoo homepage where the news headline reads "The World Health Organization ups its swine flu warning ", which is not in the least bit funny at all, rather worrying in fact, and as someone who doesn't have the greatest of immune systems, it worries me rather a little bit actually. But what makes me laugh is that my friend Barbara used to say "I suffer from Cystic Fibrosis - the swine!!!'. If only she could see.

2009-04-09T00:45:00.003+01:00

When we were gallivanting and chasing death on the Cliffs of Moher the other day, a young Australian guy asked us to take a photo of him and his friend. Afterwards, he asked us where we were from. We told him we were Irish. He shivered and said 'How do you stick this weather?'

We looked around at everyone wrapped up in their ski jackets, thick hats and scarves, suitable walking boots and hiking, warm gear.

Then we looked at ourselves. One of us was wearing skinny black jeans, black Ugg boots and a zip up Abercrombie and Fitch fleece as an excuse for a jacket.

The other was wearing skinny blue jeans, cowboy scruff style leather boots, a zip up Abercrombie and Fitch fleece and a skinny leather jacket. And a boy style hat.

Both with over sized sunglasses.

I guess you could say, unlike nearly everyone else, we just ignore it.

Great News

2009-04-07T22:57:00.003+01:00

The government have agreed to honour their promise to build a unit for patients in Ireland who have cystic fibrosis. It goes to show just what can be accomplished if people unite for common purpose. Of course, one is cautiously optimistic when taking in this information as promises do, and have been in the past, get broken. The money still doesn't exist for the building of the unit, but it will be built, just paid for in a different way than was previously agreed. I'm not too sure on the details as I went on a spontaneous vacation while all this was going on, and could only make out the news based on the emails I received.

On Saturday night, my friend rang me and suggested we took a break to Drumoland Castle in the west of Ireland for a few days. I'm on Easter break and naturally have a pile of study to be doing, so it was obvious that this would be the perfect distraction. Drumoland Castle is a magnificent place and the beauty of the place is truly breathtaking.

We went on a horse riding trek whilst we were there which was fun. I have only ever really sat on a horse once, so when he (the instructor) was judging our abilities, I had to stretch the truth a bit because I was afraid I'd get stuck in the arena place. The minute I was on the horse, riding it alone, I questioned why I always have to exaggerate my abilities to instructors! But I was fine.

Then we took bicycles that afternoon and cycled around the castle grounds, or a fraction of them at least.

We then went for the tastiest, most delicious afternoon tea in the castle I have ever had. In. My. LIFE. If they made afternoon tea in drive-thru form, I would buy a parking space to get it every day. Seriously.

Following afternoon tea, we played a game of tennis. That was quite tiring, as we were already feeling the effects of horses and bicycles, and neither of us could play tennis to much of a standard, but we both insisted on seeing who was better. I think it was the constant walking to pick up the ball which wore me out.

Today, we checked out of the castle and went to the cliffs of Moher. They were scary but amazing. They have a very high peak of the cliff blocked off because there are no barriers, and you're about a zillion feet up high, but about a few feet from your death should you slip. So that was terrifying. And I shall not be telling everyone I know that because a lot of other people were doing it, we too climbed the barrier and went for the dangerous 'do not go beyond this point' walk. Oh wait....

Well, I just won't post photos.

And now that I'm home, it's back to planning study.

Fwiiiiiday

2009-04-03T23:04:00.003+01:00

The whole 'CF' issue still hasn't improved and so all the hardworking people at the CFAI (and hundreds more) have launched a campaign called 'Irish War Crimes', because now, this has become an issue about human rights.

College finished up today for Easter, which means we will have our last week of second year in three weeks time. Provided I can use this break to study and thus pass my exams!!! Tall order, but fingers crossed!

I also realised that what with it being April, I have now made it four (five?) months of good health. I advertise that information cautiously, with fear too that I may jinx things, but fingers crossed, I can stay this well. It's great being able to trust your own body when at times it can act in such an unpredictable manner.

My weight is also good, and steady which means starting Monday I shall begin to implement the next phase of my 'get well, stay well' plan which involves training. Or exercise. But training sounds less boring and daunting. I don't like to do much exercise when my weight is low, for fear of falling into a spiral of losing weight, getting sick, getting better, exercising, losing weight..etc. And of course my dislike of exercise has nothing to do with the fact that I might be lazy or my embarrassment that I sound like an elephant galloping like a horse, whilst dashing for the bus when I attempt to run. No, no, just my fear of being sick....

That is phase three of my 'get well, stay well' plan, stage four comes when I am accustomed to doing exercise and will likely start during the summer.

By the way, I have no idea if the 'get well, stay well' program has already been invented, or if that name is used for anything else, but if not, I invented it. So don't steal it. Or I may be able to run after you and hunt you down ...depending on which stage of my program I'm in.

Moving Forward

2009-03-30T23:02:00.003+01:00

So the news of the retraction of the unit for pwcf in Ireland, definitely came as a huge blow, but I know that the fab guys and girls all around the country are working hard and tirelessly to come up with a plan to beat this. I might restate a point that has been made over and over by victims of this government (and past governments) and that is that people with Cystic Fibrosis are not asking for special fancy hotel suites, or jacuzzis beside their televisions (working ones if they can be found), but they are simply requesting basic human rights.

I think I may have worried and/or shocked some people by updating my Facebook status expressing my outrage (but not realising of course to many, that this would come across as cryptic and possibly mean something had happened to my health...) which I apologise for. Of course many people were relieved that this was not the case, and some surprise that I should care about all that kind of stuff, now that I don't deal with it anymore. But the case is that I did deal with it, and I can't help but remember only too well the disgustingness of the situation. Which is pretty disturbing really... And nobody should ever be subjected to some of the things I saw as an 18 year old, some of the things I heard. But in reality, this year's 16 year old will be moving to adult services shortly and they will join the rest of them, suffering through a most undignified situation with courageous dignity.

I will keep you all updated...but watch this space.

I'm in my final week before Easter break, and then the real hog of study begins. In four short weeks, I will be half way through my degree course. The stress of yet another assessment this week seems to be getting to me as I locked myself out of the house going to college this morning (House and car keys and all). Clever. Of course, I totally forgot about the time change too....during an exam! Thank goodness somebody pointed out the error mid exam when I told them the time. I think smoke may have come out of my hand as I scribbled furiously away.

Just one week!

Frustrated and Angry

2009-03-28T00:31:00.006Z

*Warning* This is a rant, albeit an important one, but if you have no need for depressing material, then drag the mouse up and hit the little 'X' before you read on.

Where to begin... Facts: Ireland is a wealthy nation (well, until recently anyway). Ireland has the highest rate of Cystic Fibrosis as well as one of the most aggressive forms in the world. And yet, as a patient who became so ill as a result of the disease and a transplant was the only treatment option left, in adult services, I had my own room once. I shared toilets my whole life in hospital with patients who had MRSA, C-Diff as well as other dangerous contagious bugs. I shared six bedded rooms with dying women, with other people with CF (whose infections could have killed me), with ladies who were no longer 'with it' and would take it out on anyone who listened, who may wet their beds or the floor routinely, or as happened me once, came running into my room in a distressed state at 1am in the morning, throwing my medications on the floor. The undignified part was the fact that this woman was wearing nothing from the waist down, but clutching a nappy in her hand and screaming in distress.

No dedicated CF unit exists in the Ireland's specialist centre...or "centre of excellence". When I was patient, they had two single (not en-suite) bedrooms for their CF patients on the respiratory ward.

So 14 months ago, a national radio talk show was taken over by calls from all around the country from people with CF (pwcf), relatives of pwcf, friends of pwcf, and if the whole country didn't know what cystic fibrosis was....they soon learned. People phoned in saying they had seen plans and blueprints from the early 90s for the new unit. Other parents rang in claiming the same thing, sadly their children had since passed on. The show was inundated with offers of donations, of offers to build a unit for free, of offers to put patients into hotels instead. And out of the slimy woodwork, comes the government. They promise to build a unit, that 14 en suite rooms will be provided in the interim and that a unit will be up and running by the end of 2010.

We got eight beds. Fantastic en suite, spacious rooms. For a few hundred patients. At any given time there can be up to 30 inpatients. And now they've gone back on their promise of the other six rooms and of the unit altogether:

http://www.irishtimes.com/newspaper/frontpage/2009/0327/1224243553913.html

I got lucky; I escaped. But Barbara, Damien, Jean, Darragh, Sam, Lyndsay, Ian, Brendan, Mary and Patrick didn't. Three weeks ago, Louise died. Two days ago, Heather. These are all people - and only people who I know, there are so many thousands more. These people put up with 'facilities' and hygiene standards that would have a pig factory closed down.

It makes me so angry that this can be allowed to go on when the politicians are lining their greasy pockets with money, where the people in the HSE are given hundreds of thousands of Euro bonuses. Maybe nobody cares about the most vulnerable when the country is in a state of economic crisis, but they certainly never cared when we were all driving newly registered, over sized, chunky Audi's and Land Rovers either.

It's so very easy to turn the blind eye, but what if it is your child in this situation, your sibling, your neice or nephew, your friend, your partner? What if it's you?

This is Why I Love Global Warming

2009-03-21T18:55:00.005Z

I know it'll kill us all, or so we are told, but to enjoy St Patricks day like this makes me love this whole Global Warming thing (Of course I wish the ugly naked man who frequents the beach wouldn't share my love for the surprising heat):

Of course, it does have it's flip side too:

These photos were taken SEVENTEEN minutes apart. What's more insane is that some of the more enthusiastic guys in my class turned up to college in shorts on Thursday, and yet I wore gloves later that evening.

A Little Bit of Sunshine Required

2009-03-15T23:46:00.004Z

I've realised that lately it seems I'm all doom and medically gloom. Needs fixing. But just a quick update: Stomach is doing great. I've restarted my 24 hour insulin (an injection once a day aimed at keeping sugars controlled in between meal-insulin) having been off it for over a year.

In other news, (some of you know) in January I applied to a programme which, if successful, would send my profile to America in the hopes of getting placed at a Summer Camp for the summer. There were many hoops to be jumped through: First I had to fill out forms and forms of application, then I had to do an interview, then I had be accepted [by them], then I had to pass a police check. All of which, thankfully, I did. There was an element of relief when I learned of passing the last bit, there was that tiny bit of doubt on that one - you never do know!

So then you wait until a summer camp pick up your application and decide that they want you. It's kind of like sitting on a bench waiting to be picked for a team. Some people email camps they like the look of. Some people get placed quickly, others it can be the week before camp starts.

Well, 10 days after I got accepted, a camp decided they liked me enough to offer me a contract, working in drama/theatre. I had a look at the camp website, spoke to a girl who went last year, looked at the camp timetable, generally did a lot of research. I hummmed and hawwwwwed. And then I decided, sure what have I to lose? So on Thursday, I signed my contract and sent it back.

I leave mid June and finish camp mid-August. I have yet to decide what to do after that. There is already talk of travel in America, I have heard rumour about island-hopping in Greece. Who knows?

If you did not read this post here, it briefly explains the 'falling-through-the-gap' situation I found myself in this year. If I sit and wait for opportunities to come ringing my doorbell, I think I'll be sitting a while. I'm incredibly nervous about the summer, whilst truly excited too. I don't really feel comfortable talking about it freely yet (oh wait, whoops, public website) in case some hitch pops up which means I can't go. And no, my two inch scar which completes my 'stitched up, swen back together rag doll' look isn't going to stop me going.

So, yes, life, it's like one big wow.

I Hope They Used Industrial, High Quality Staples...

2009-03-13T00:23:00.002Z

I was driving home from college this evening and I looked down and noticed a tiny mark on my top. When I used to 'leak' before my stomach stapling surgery, I would very regularly (nearly all the time) have marks on the inside of my tops where they had rubbed off the open leaky hole. So my natural instinct when I saw this mark was 'oh, a leak'. Then I realised two things:

1. I was wearing two tops, so for it to come all the way through was unusual.

2. WHAT THE HECK, I'm CLOSED, I shouldn't *beeeeeeee* leaking.

So at every stop in the traffic, I'd lift my top and try and see what was going on. Yes, I know, what other motorists must have thought - mind you, the truth that 'oh sorry, don't worry, I'm just leaking here' may not have exactly reassured them.

My wound until now has been covered by steri-strips. I'm not sure what they actually do, I think they're a bit like paper stitches. They were due to come off tomorrow, so I just removed them this evening.

At first, it looked like there was indeed a part of the scar that was open a bit (I'm talking the size of a pin) which was oozing. I had been thoroughly warned that this may happen. It all looked a bit messy-ish to be honest. So I put on a big dressing and left it.

It's drier now and overall it seems like a pretty tidy scar. Longer than I thought though (2 inches - I thought it'd would be about half that).

I'll put up a 'before, middle and after' photo next week, simply because some people in the future may wish to see what it looks like. Well, I know, I'd have liked to see what it looked like before I had surgery.

Don't Tell My Sick Note

2009-03-10T00:18:00.002Z

But I went back to college today. I'm fine.

Don't tell anyone else but I bought a 24 pack of Paracetamol on Thursday evening and they were gone by Saturday evening. I didn't really realise what I'd done until I realised the packet was empty. I didn't take too many or anything, but the packet says no more than 4 per 24 hours. Pah. I know I took more after I had a serious operation a few years ago, what does the packet know?

Anyway having sufficiently panicked myself into the fact that I may be a drug addict, I may have overdosed myself, I may have some mad psychological problem that would convince myself that I'd never get over the pain, I decided on Sunday I'd best take no more. So I continued to sleep a lot and I didn't [take any more]. And now I'm absolutely fine.

My brother and his girlfriend (I call them BeeGee) went off to Thailand this morning. We gave them Barry's tea having been convinced by the ad that that's what you do to remind someone of home. Safe travelling!!

Home Sweet Home

2009-03-06T23:19:00.003Z

Many thanks to everyone for your good and well wishes, they mean a lot. Foolishly last night, feeling great and pretty much pain free, I felt well enough to not take any painkillers. Of course this 'step forward' was forced backward at 6.30am this morning when I felt very sore. Totally my own fault; I'm always in too much of a rush to stop taking pain relief, and after a night spent lying predominantly in the one position it meant today I had the paracetamol on hand every four hours again. I hopefully won't make that mistake again, but likely I probably will.

I believe my appetite has always been incredibly poor (until after transplant, that is). I don't believe this has anything to do with laziness, stubbornness or any other aspect of my personality - although when push came to shove, I'm sure as a child I didn't make it any easier. I also don't feel my lack of eating reflects my parents' parenting abilities. I've read before how some people with CF say that their parents simply didn't let them leave the table until they'd finished their meals. My problem was a lot more serious then a simple 'Supernanny' method could cure. Even now, as I eat obese man portions, I know I'll still never require a diet; I just don't put on weight.

During hospital admissions, my parents would tell nurses when I was very young that I didn't eat, which they took to mean 'we have a fussy eater on our hands'. About two days later they (nurses) would tell my parents 'You know that your daughter doesn't eat anything??'. Yes.

At the age of two, my parents began nasal-gastric feeding - a tube up the nose, down the throat and a high calorie something-or-other infused every night; the tube was removed each morning.
I was about five when a permanent solution was decided upon: A hole made in my stomach wall, and a long piece of tubing would be put in. It would cut out the nightly traumatic event of nasal tube insertion (which considering this involved holding one screaming child down, while two other children occasionally looked on, and two parents alternated between holding, and inserting; it was traumatic for everyone); but it would involve cutting an outwardly healthy looking blondie girl open and acknowledging something else: that this CF thing was also permanent.

I had the long tube for many years before the smaller 'button' was invented. To say I hated the tube growing up was an understatement; I loathed it. I didn't care about chest infections, hospital times, taking feeds, I hated the tube. I cried to have it out but understood that I didn't eat properly so would, quite frankly, blow away without it. It was the only visible giveaway that I wasn't 'normal'. The cough could be explained, as could the skinniness, but not the tube.

To be fair, in later years, I praised it, it was great. But that was as I was older, I didn't really care what other people thought anyway.

So to have it removed and then for the hole to cause me problems was frustrating. I didn't mind the 'second belly button' really. Most people thought it was pretty cool. But now it's gone. That hole part of my life has been closed. I can't see what it [the scar] looks like just yet, but I'm hoping that in a few years, you'll never know it was ever there.

Home from hospital

2009-03-05T11:49:00.003Z

OK, so lots to talk about, I've just been released from hospital with a nicely stapled stomach, with a digestive system that hasn't moved since Monday(!), with bruises up and down my arms from attempted drip lines (thankfully I was out cold for that bit), but feeling relieved to be back where I'm allowed to do what I want. *Sigh of reliefffffffffffffffffffff* So yes, I'll get to all that eventually, but while I have other work to catch up on, I'll leave you a little scenario which exemplifies how I should never take a Cystic Fibrosis / Transplant educated team for granted again. See if you can follow....

Point 1: I can't digest fat from foods. At all.

Point 2: For this reason, I take medication called Creon to do the fat absorbing job for me.

Point 3: If I eat a chocolate bar, I will take 1-2 Creon tablets. If I have a Sunday roast, I'll take 10-12.

Are you all following?? Great.

So when I arrived at hospital on Monday, all my tablets were confiscated from me. Which, if that's their policy, is fair enough. But I requested that since i eat all day (as in ALL day) if I could keep my Creon on me. I was told no. That I'd have to ask any/every time I wanted it. Annoying, but whatever.

So at 6pm, tablet time arrives and I'm given one Creon tablet.

No, no, I explain. I'm not eating, I don't need Creon.

Oh, but you're written up for it at 6pm, I'm told. No, that's some mistake, I explain. I only need Creon when I eat.

Oh, so you take it three times a day? I'm asked. No, I take it with food, so whenever I eat food, I take Creon.

The nurse leaves and promptly returns with a plain white natural (old person who can't taste anymore) yogurt. I look at it confused.

That's for your Creon, she tells me.

*Sigh*

Lent

2009-03-01T17:23:00.002Z

I remembered this morning that it's Lent. Since Wednesday. So I decided to give up fizzy drinks.

And I've now just had a glass of sparkling water.

Maybe I'll just do extra days at the end instead.

Positive Psychology

2009-02-27T18:21:00.003Z

I've had manic weeks before, but in terms of being buried under work, this week was like having a skyscraper built above me; at 5.30pm, this has been my earliest finish all week - 13 hour days in college aren't exactly fun, especially when one is clearly suffering from some form of insomnia, but it will be rewarding I'm sure at the end of it all. No, I know it will be!

So, I thought I'd put down a bit about something interesting I learned this week from a talk we had from Dr. Ilona Boniwell, a positive psychologist and author of the book Positive Psychology in a Nutshell. You can learn about her by clicking here.

She opened by asking us the following question: "If you were going to see a psychologist in the morning, would you go around and tell your friends and people you knew?"

And then,

"If a friend told you they were going to see a psychologist in the morning would your reaction be: 'oh no, why? What's wrong?'"

Why is psychology still seen as a 'victimology'? Why are our reactions not 'Wow, that's great!'?

The second thing I learned was about mental well being, and this is more something to ponder and think about. If someone goes through a particularly stressful or traumatic event, we always hear about people suffering from post traumatic stress. But has anyone ever experienced post traumatic growth? I think that's such an interesting point of note. How many of us experience such difficult circumstances and have our outlook or perspective changed as a result? I'll put my two hands up to that.

And thirdly, two tasks were suggested for greater happiness and overall mental well being.

Each day, you write down three positive or good things that happened in that day. The first few times, you may find it hard to pick out things, let alone three. But within a few weeks you should find it easier. My own personal reasoning for this is that you have a more positive overall outlook so find it easier to find positive things of note.

And finally, random acts of kindness. Five a day. My friend already did four today. I tried, but most revolved around driving and letting people go ahead of me. It made me feel more relaxed when driving but it's something I have to work on.

Anyway in times of stress, positive psychology provides a light of relaxing relief.

Newsaclle Surgical Frollics

2009-02-23T20:49:00.005Z

(another food pic....)

I got a phone call this morning. My surgery has been booked. For next week! To be honest, the timing is great. It's just a real shame that I don't really want to have the surgery. I mean, obviously, I do; I want the end product. I just don't want the fasting, the pre-op room, the needle, the going to sleep bit, the pain, the scar. But I suppose fear always pushes the negative to the forefront of the mind. The end result will be worth it. And then I can go around telling people the reason I'm so slim is because I've had my stomach stapled. No Biggest Loser for me!

Then I got other exciting news, but I'll reveal all in due course...

The Curious Case of the Unseen Film

2009-02-22T17:01:00.002Z

I have tried, unsuccessfully, to see The Curious Case of Benjamin Button too many times to count. OK, four times. Twice last night alone. I am destined not to see this film.

And then I remembered, I was actually IN this film, why would I need to see it? See evidence above. The fake tan specialist was fired after the make-up on my face didn't match the tan on my arms.

It's Sunday. I have nothing better to do with my time.

Ehhhhhhhhhck

2009-02-19T01:42:00.004Z

I know you're looking at the waffle above with the whipped cream, fake fruit stuff, chocolate powder, golden syrup and a lifetime's stock of sugar. But no, look just behind, at the empty bowl which previously contained my cereal for breakfast. Yes, I discovered the waffle making machine after I ate you see. And then I ate my creation. I think therein lies my mental problem which explains the following post:

I had immensely bad heartburn yesterday. Worse than pregnancy heartburn. I don't even know if pregnancy heartburn is bad but this had to be worse. I actually looked about 5 months pregnant for the record. I went to the cinema and saw He's Just Not That Into You, which is quite good, but I silently burped about once a minute (sometimes more) which was very uncomfortable. Have you ever burped once a minute for a good two hours? Don't. Actually I kind of suppressed all the burping which possibly made it uncomfortable.

So last night I slept sitting up as I was afraid of reflux aspiration (a complication I'm at risk of) and woke up this morning looking my skinny self again. Phew! I was wide awake by nine but my body wouldn't let me out of the bed. So basically I read and got up at 2pm. Ha. I honestly think my body was wrecked though.

I'm positive it was all a result of greed. I felt myself getting heartburn early yesterday but ohhhhhhh no, I just had to go eat that packet of Doritos, those two bags of microwave popcorn, allllll those chocolate bars, that share size bag of salted nachos, that bottle of diet coke, as well as my normal meals. And the rest. So yes, it's totally my fault.

To counteract the unproductive morning, I went to college and got assignment work done. And then I went to my first aid class and then I babysat. And I even came here. See, I'm not feeling guilty at all and trying to overcompensate for it. What a silly suggestion.

Clinic...

2009-02-17T23:00:00.003Z

...went well. Since December there has been a downward trend in my lung function but nothing of huge significance- still 98%. They basically calculate the mean/average of your two personal best results and if your lung function drops more than 10% it is considered significant. I am not considered significant. I feel well and plump so was given three months before having to show my face in those parts again. This is a personal best.

Before I see them again, I hopefully will have been on a sun holiday, will have finished my exams, will have a concrete plan for the summer, my hair will be longer, I will weigh more, my car will be fixed, my stomach will have been stapled, my hearing will have been investigated - I said MY HEARING WILL HAVE BEEN INVESTIGATED - and I will have a six pack. Ok, a four pack.

A lot can happen in three months...

I found this on my computer; a photo I took whilst riding the bus in Scotland. Can anyone spot Wally? (Or Waldo, depending on where you're from)

Hospital Politics

2009-02-16T20:34:00.002Z

The hospital I attended prior to my transplant has a public building and a private building. I am fortunate in that I have private health insurance which *should* permit me care in the private hospital except that my CF team aren't insured to work in the private hospital, only the public one. So if I were to be admitted for a nasty chest infection, I would only see the drip bag - no physio, no dietitian, no diabetes nurse, no CF nurse, no doctors (except the Consultant I'm assuming) so basically it wasn't allowed.

If the public hospital wasn't so atrocious facility wise (CF patients all sharing rooms except for the two private rooms on the ward, which didn't have en suites) I wouldn't have cared. But c'est la vie.

Anyway, I have to have this surgical procedure done soon and so requested to have it done privately. I don't need to see the CF team so it really shouldn't be a problem. Until it became a problem.

I was told today that they had another CF patient (not transplant as I understand) who got into trouble (I don't know if that's healthwise or because of what happened after), ran up a bill and the bill never got paid. So they don't like CF patients in their private neck of the woods.

Um?

If they had substituted the words 'CF patient' with 'Black patient' they could be in a lot of a trouble.

While they're at it they could probably warn the banks not to issue people with CF credit cards either because they (tarring them all with the one brush here) probably wouldn't pay those bills either.

I still can't decide if I should be offended or not. I think I should be? Anyway, I now wait another two weeks while they try and sort through the tape. But fingers crossed I should be fine!

My Midterm

2009-02-15T22:37:00.002Z

I'm on mid-term. I get a week off to whatever I like with. We were all warned not to go away, but rather to spend the week stuying....and....something else. As I was browsing Ryanair for cheap deals at the time, I missed the rest of what was said.

As it happens, tomorrow I have an appointment with my consultant who will be performing or overseeing my surgery whenever I get a date. I hope I get a date in March sometime, even if it means missing a few days of college.

On Tuesday I have regular clinic. Apart from waking up with standard cold related sore throat this weekend, I'm still feeling very clear and will be relieved to see my lung function return back up from its *slight* fall the last time.

I've also managed to put on about 6kg/13ish pounds/about a stone since my last admission in November. I was told back then to start drinking those high calorie (600 per drink) drinks. Of course I smiled and said enthusiastically "Oh great, I'll definitely try and fit in one a day" as I skipped off to collect 3 boxes of the stuff. So yes, that lasted two days. To be honest, I much prefer real food. And if ever I need to keep a door open, I have three door stoppers at the ready. Anyway, having not changed my diet in any way since last year, I seem to be piling on the pounds again. I think there is some correlation between the decrease/disappearance in my cough and the putting on of the weight.

We shall see...

More Films

2009-02-09T11:01:00.000Z

Oh dear, that post which got lost in cyberspace, seems to have been permanently deleted.

It was basically a comment on Slumdog Millionaire (have you seen it yet?) and The Pursuit of Happyness (Have you seen that one yet either?). Both great films; check them out.

I saw Revolutionary Road last night. I would not recommend it. I would nearly say 'Don't go see it' but that wouldn't be fair. And yes I can appreciate the great acting from Leo & Kate but my gosh, talk about a boring film. I kept hoping for it to be over. Possibly only the second time in my life where I have felt that way about a film (the other time was Legally Blonde 2).

Anyway, to get back to the point, the kidnapped and deleted post contained the most crucial paragraph of all - and I post it with just a hint of trepidation (no, in my case, that's not an exaggeration) - but at the moment, I'm feeling really, really great. That chronic cough that shouted to the world anytime I got a shock or whenever I laughed seems to have gone dormant. Or better still, gone away.

I'm still taking Azithromycin every other day (and for me, gosh that gets complicated) but it really seems to be working! Hip, hip.

Boo

2009-02-05T22:54:00.003Z

OK, so putting aside the blatent ethical issues of putting this video online (I mean come on, a minor, in *this* video, laughing at his expense etc, etc), I had to copy it here. Now there's a good chance you've already seen it (3 million other people have) but the reason I show it is because it mirrors *exactly* how I feel after every procedure I've ever had - be it bronchoscopy or port surgery. Now thankfully in my case I've always - for the most part- been able to keep my thoughts inside my head, and thankfully there's never been a camera around when I've been in these states.

I mean there was that one time where I started reciting my Spanish oral exam to a poor nurse who happened to be Spanish (or was it she visited Spain once, during a stop over flight...?) - gah. Doesn't bare thinking about. Enjoy. Or not. But, learn!

Mid week

2009-02-05T00:31:00.003Z

Oh gosh, blogger just deleted my post.

And while we're at it, there's a song on the radio at the moment and he says 'He's not heav-yyyyyy, he's my brother....' : I'm almost certain the singer isn't implying that it's ok that his brother is overweight, because at the end of the day, weight isn't important, he's his brother. It sounds too seventies to be that (I don't think obesity existed back then did it?). What a strange song.

Snow Day Intermission

2009-02-02T23:01:00.002Z

No, I haven't forgotten about the points I wanted to make about Slumdog Millionaire (have you seen it yet?) or The Pursuit of Happyness (have you seen that one either?), but for today, my excuse is that it snowed. And that's a pretty big deal.

I cannot remember the last time it snowed, proper, sticking to the ground snow. It certainly did when I was younger, but it's been a while. Don't be under the impression that this was a snow blanket of Alps proportions or anything but you could definitely see footprints. It was also enough for a few giant snowmen in college that I spotted when I got in. And although beaten and knocked down when I was leaving, there was still enough snow to rebuild their family. It was worse around my house than it was around college, but interestingly I saw an older lady wearing a one piece luminous pink snow suit which was funny considering the snow around there had mostly melted. I suppose she wanted to get value out of her purchase from a couple of decades ago though.

To be honest, the child in me adores the snow, but once I get out into it, I'm unsure of what to do next. It's cold. It's wet. It's just...blah. Plus when it snows, it's just annoying because it's not rain, but rather that kind of 'run-with-head-down-and-eyes-squinting' kind of weather. I do enjoy the novelty of it however, but considering I need to leave the house and I'd never driven in snow until today, well, let's just say I'm ready for spring to be here already!

Intermission part two

2009-02-02T00:20:00.002Z

I'm exhausted. My eyes hurt. I think I encountered a mild bout of food poisoning or at least food-that-doesn't-agree-with-me-ing yesterday. I bizarrely went babysitting on Friday night (not the bizarre bit), finished at 12.45am and then decided that the night was still young so jumped home, got changed and went out for the night. It seemed like a magnificent idea at the time. It probably explains the sore eyes right now.

But anyway, the Superbowl XLIII is on tonight!! Or...right now!! Exclamation marks!! Pittsburgh -vs- Arizona. My money is on the Steelers. Not because they're winning right now or anything.

I don't think I've talked to so many NFL fans or Superbowl followers (which if I'm honest, would best describe my interest in the sport - but more because I don't want to sit up past midnight every Sunday night to watch the game) as I have this year - it's unreal. SOOOOO many guys I know are watching tonight (not a whole lotta girls but I'll recruit). It's being shown on three channels here, but annoyingly TV3 keeping jumping to freeze-frames every time the Americans take an ad break instead of just showing ads or going to commentary.

Seriously, though. I need my sleep.

Intermission

2009-01-28T23:02:00.002Z

In between dropping into clinic for bloods, following two people into an examination room - both of whom thought the other was holding the door open for me- the door then closing in my face and knocking me back slightly with a *clunk* noise, clearly making me question my foot-door coordination (and my feathery body weight); having the new doctor profusely apologise to me when I managed to enter the room, and then having him drop the empty test bottles on the floor causing them to roll every which way and having him apologise profusely again (in a crazy, mad scientist way/voice, but really, really friendly) and then having him get my blood first time, I'm rather tired.

Only joking, I did manage to accomplish slightly more than that with my day (actually a LOT more than that) and I blame that for my tiredness. Plus it's 11pm so that's a natural 'I'm tired' time. I have enough excuses, OK?!

Oh also, this is my 601st post. Seems I have an uncanny ability to type when I have absolutely zilcho to talk about - it reflects real life really...

To Begin...

2009-01-28T00:50:00.003Z

It isn't going to 'all about me' (geddit??) as it usually is. My health is, in general, good. I have a constant cough and I'm still productive and I fear I've fallen into the hole that is 'acceptance', a hole which is a dangerous one to be in. This cough isn't right. But I'm putting on weight, it's not stopping me so why bother bothering about it? But that's all for another day... I'll mention it when in for bloods tomorrow, so we'll see. The brake pedal isn't working on my life right now and so I continue to spin into insanely busy days! Bazza....

A while ago a topic about being labelled 'inspirational' came up on a message board I lurk on. Some people found this label annoying and some, bizarrely, found the term offensive. I would never, ever see myself as inspirational or inspiring in any way, shape or form and if someone were to claim I was then I'd kindly ask them to put their glasses back on. But aside from the arguing of what, who, where, how a person/place/thing is inspirational, I think this has far less to do with that person and what they do, and more to do with the person who takes inspiration from that person/place/thing. Does that makes sense? I think not. Let me put it this way:

Suppose you are someone who clumsily tripped on a banana skin and twisted your ankle, ending you up on crutches. Not that that has happened to anyone I know but, anyway. Every day you take your elderly neighbour lunch. Today is no exception, except you have to do it while on crutches. A horrible nuisance.

Now view it from a bystander who sees a crippled person (is that PC?) on crutches slowly make their way to a neighbour's house, carrying with them lunch for the elderly neighbour. To them, they see this as a 'wow, look what that person has to do and here I am, perfectly able, and perfectly lazy'. They see you and are inspired to do something good.

And yet, you're just simply getting on with what you usually do, albeit slowed down, ultimately due to your clumsiness.

Not exactly getting my point across here very well, but what I'm saying is a person doesn't have to scale mountains, run around the world in 30 days, survive 18,092 diseases with no arms and no legs and then go on to enter and win a triathlon (I don't know why all my examples involve sport...) to be viewed as inspiring because fundamentally it's not about what they do but rather how people perceive them.

And so brings me to the next three things I've seen recently: 1. Slumdog Millionaire.
2. Auschwitz: The Man Who Told the World
3. The Pursuit of Happyness.

Now if I hadn't rambled, I'd be able to say what I wanted to say in the first paragraph but for now I have to go to bed. So I'll say in fancy italics, followed by three tantalising fullstops....To be Continued...

Unoffical Interview Debrief

2009-01-26T23:52:00.001Z

Following an job interview I had on Saturday:

"If I was going to give you a debrief, the one thing I'd say is that, I know myself that I talk fast but good grief, you talk incredibly fast"

What can I say? I have a lot of things to say and just not enough time to say them all!

New Beginnings

2009-01-20T21:13:00.003Z

We finish class at about 12.50 every Tuesday and so the day became known as 'Cinema Tuesday'. We'd head down to the cinema, get cheapo prices and see a good film. Today was no different, except that I had to go watch Barack Obama's inauguration at 4.30. And yes, I had to go.

When I told my friends the reason for my absence, they mostly stared at me in silence, and a tumbleweed floated by. I apologised but told them I had to watch it, because I had to watch it. One half of my friends really haven't much interest in politics of any description which is fair enough, I have very little interest in football - each to their own.

So I was driving over to my friends house to watch the ceremony and was running a little late when I got a text from one of the cinema Tuesday groupies saying "We don't like giving presentations, imagine speaking in front of that amount of people". I was highly confused not knowing what he was on about and then I clicked, he must be watching Obama.

And that's a pretty incredible thing- someone who has zero interest in politics was swept up and became interested enough to take a peek at this momentous occasion.

And that's just the beginning...

Another Aspect

2009-01-19T22:41:00.003Z

Amongst other things, I'm an accomplished belly dancer. I don't have a certificate that proves that, but it's true. I've never applied for any jobs as a belly dancer, and really, I don't know why. But I'm a bendy person- my arms bend too far, if I weren't so against gymnastics, I'd be able to do the crab with ease, but alas at nearly 5"4, I'm a bit of a bean pole to people in that world.

So anyway, back to the belly dancing. I can belly dance at the drop of a hat, except on rare occasions such as today, where the only thing it looks like I'll be dropping is a baby. **Let's make it perfectly clear I'm not planning on dropping a baby, but I wouldn't look out of place shopping in Mothercare judging my appearance**

It's shocking really. And it's uncomfortable. The only way to describe it is if you ate a massive lunch which gets no further than your stomach. You're still hungry for food at dinner but your head tells you that there's nowhere for meal two to go. But you have to eat! So you do.

I knocked back some anti-acid, some creon (for digestion) and some motillium (to speed up the bloatiness). My baby look has decreased somewhat, but I reckon I'd still get (a) dirty looks from older ladies and/or (b) a seat offered to me on the bus.

These problems are very common to people with CF, I'm just (thankfully) not much of a 'digestion' girl so this is a bit of a rare occurrence. I'm actually not allowed see my CF team anymore, which seems a bit hard to believe- I still have CF right? Digestive issues related to CF aren't the speciality of a lung transplant team after all. As it happens, I actually went and saw my old CF team last year anyway, slightly behind the backs of my transplant team (who said i shouldn't go - hi to any of my transplant team who may be reading this by the way- now you know how I know that my vitamin levels good enough that I don't need to take vitamins ;-) ), but it frustrates me that I have to do it in such a way.

I may point out that I'm very fond of the transplant clinic staff who look after me and who always accommodate me whenever I ring up and feel like giving them riddles to solve, but whether it's a control thing, politics or what...it frustrates me that teams can't all sing off the same hymn sheet.

Manic

2009-01-18T17:53:00.003Z

As I think I mentioned before, this past week has been totally and utterly mental. Starting this week however, I will get Wednesdays off. I will therefore, from now on, view these as my ~~sleep in until stupid o'clock~~ study days.

I still managed to find time to go out both nights this weekend which was great. Although on Friday, having eaten a whole pizza, two kit-kats and 3/4 tub of ice-cream, I seemed to develop a head cold over the space of a few hours. Just very sinus-ey and sneezy. But I don't know if that could be from the ice-cream- the dairy causing me problems. I mean I've never had a cold develop over the course of about two hours like that, but I suppose it can happen!...can't it?

But there's about two weeks or so left of January and then I can offically say I've had a good start to the year :)

I have a very, very long list of people to call this week ranging from the insurance companies to booking my surgery (again) to former employers. So it will be slightly less manic but mental all the same. With a Wedensday off to break up the week :)

Upsee-Datey

2009-01-15T01:05:00.003Z

Pre-warning: This blog is about nothing.

I got my flu jab. Apparently I'm the only one who calls them 'jabs'. I was told that next year I should get it in October and not leave it so late. Which is a fair point. In my case, this has been the first opportunity to receive it as you have to be well or....something. And every time I asked I was told to wait. Which is a fair point too.

So it's Thursday already and I've got a list the length of my arm of things I have to do. I feel accomplished a lot this week and yet still feel there's a mountain to climb with getting on top of everything.

I have my full, 9-6pm day tomorrow, followed by babysitting. I have a job interview of sorts next weekend so I will be spending the time leading up to that organising/getting that dreaded medical, a background check...gulp - I'm praying I don't do something awful with my car between now and then, or insult a policeman...and going over application forms, smiling for passport pictures and hunting down my references. It's quite a fun process really. I just hope something comes out of it all.

Oh actually, something already has- I signed up for my 10 week first aid course! I think everyone should have some sort of basic training anyway and we had a few sessions in school but I've never been certified with anything. And I was in school a million years ago. But because I want ~~it to look good on my CV and application forms~~ to (be able to) save lives, it if nothing comes from any of my plans for the summer, I'll be a bit more educated on how to give the kiss of life!

Falling through the gap...

2009-01-11T22:11:00.000Z

I finished school in 2005, which makes me feel rather old, because it's my ten year primary school reunion this year. Well the reunion that has yet to be organised and nobody will probably organise it except that I've dropped LOADS of clever hints to primary school people I'm still friendly/in touch with. You know like 'Oh so have you heard anything more about this reunion yet? I heard it's in "name of pub"', that way it sounds like someone has been organising something but secretly nobody has. It's kind of like me passing the buck, except I never had the buck to begin with. I don't want the buck!

Anyway, all that aside, I'm getting old. Well, not old as such, but not any younger. Except that I look so freakishly young, that I'm able to pass as a 16 year old still. But that's not the point either. So I graduated school in 2005 and along with all my friends started college into either 3 or 4 year degree courses. Except about two months in, I took a detour to hospital and skip the long story which has been told a Brazillion times before, I ended up restarting college two years later.

My best friends are ones I went to school with and our group has, so far, survived the leaving school goodbye and we keep in touch really well. But those friends all went and did the travelling things at all the proper stages. The year I had my transplant, some of them went interrailing. The year I was recovering and not allowed back to college, half went to live in America for the summer, and the others went travelling through Asia. Then last year I got to do interrailing with the girls who hadn't been before and it was definitely fun. But it also marked the end of the student travelling and having fun life as most of them knew it.

My two best friends are working (in a proper grown up job) and studying for a Masters (hello!!! Yikes). My other...'options as travel buddies' (it's easier then going through how I know each person specifically) are also either Master studying or working or on placement.

My friends who I'm in college with are all working through the summer to earn money, which I totally respect them for I might add.

But it kind of means I have fallen through the gap. The girls are past the stage of travelling and road tripping and the next stage for them (possibly in a year or two) will be Australia. And then they will be proper, officially, scarily grown up. The college group aren't (this year, anyway) organised enough to go travelling.

So where does that leave me? Well I did a lot of research and thinking and researching and thinking and discussing and option analysing and I found what would be a great solution. As long as I can pass a friggin' medical. Me. A medical.

Excuse me while I get sick from laughing.

Actually, laughing aside, I'm pretty sure I would do great in a physical medical - my heart/blood pressure/pulse are definitely all perfect. My sight is pretty perfect too, I'm not even colourblind (I hope everyone loves my new red font by the way)! BUT, if medical history counts for anything, well...the problem may be that the doctor runs out of ink before he's finished writing it all down so thus the medical will be deemed incomplete.

But we'll have to see. It's not like I'm trying out for the army or anything. The mystery will be revealed if I don't pass out while they try to get blood from me during my medical anyway. But, I guess what I'm trying to say is that if we sit around waiting for the ideal time to come our way and for it to present us with the ideal opportunity on a plate then we could be waiting for a while. And that in my case anyway, life is about seeking out and stepping outside the comfort zone if you want to see what life can really offer you.

Diet...

2009-01-09T02:34:00.004Z

So I've been eating a lot lately. And I don't mean bigger portions, or indeed extra portions, I mean bigger meals and extra meals. Being that the stomach is an expandable muscle (I remember that from school, not some cheap wikipedia-ing I might add), it makes sense the more you put into it, the bigger it gets and thus the more it expects.

It's really in the last few weeks (since Christmas) I've noticed that I'm hungry all the time. If I was an ordinary person I'd probably consider this a problem and seek medical advice, but being that I'm not an ordinary person, I won't.

For one, if there's something medically wrong which is causing me to eat like a horse, I probably already know about it. Diabetes, steroid use, digestion issues, being a greedy person - they all cause excessive hunger.

Secondly, even if there is another underlying (or under-under-under-under-underlying in my case) cause, I actually could be doing with putting on weight anyway, so I'll leave it a few months before I go investigating I think. I mean, if it ain't broke, whaaa fix ut? Or if its brokeness has advantages why go meddling.

So anyway, I have noticed I've put on a couple of pounnds since Christmas to be fair. Well, a few more than people probably expect. So, I contacted a little known, hide away American TV station to tell them about my problem. They listened with compassion and generously offered me help. I need help. So they whisked me to a photo studio and took my photo in a bright illuminous t-shirt and most unflattering bicycle shorts (which would make any skinny-malink look like a potato in) and I'm not sure what's going to happen from here on out but I already feelbetter about myself. You can judge for yourself.

Back to the real world

2009-01-06T22:12:00.004Z

I'm actually more excited today as I discovered I only have four months left until summer! And I haven't miraculously discovered how to jump ahead in time (having jumped from five months left on Saturday to four today), I've just discovered how to read the college diary. That four months of course excludes Easter and Midterm holidays too. Gah! Freakaaay...

I had clinic today too. My wheeze/rattle/whatever you want to call it seems to have mostly settled itself. My lung function blows were down a smidgen (from 3.25 to 3.06 Litres), meaning a few weeks ago they were 104% predicted, now they're 99% predicted. And while that's 5% down, it's still fantastic (in my opinion). So we shalln't complain!

I've been put on two oral antibiotics - one week long course and one permanent antibiotic to be taken every other day. That spells disaster for me as it sounds easy enough but I'm an easily confused person. But I suppose, if in doubt, go for the overdose maybe?...Or just take it Monday, Wednesday, Friday, Sunday, Tuesday, Thursday, Saturday. Yes, that makes sense. Until I start second guessing myself and asking whether I'm on the Monday, Wednesday, Friday week or the Sunday, Tuesday, Thursday week, or whether the week starts on the Monday or the Sunday and how does this help or hinder my confusion.

The secretary then glared at me when I told her I wanted an appointment for two months time. She muttered something about 'Oh they'll be on to me to double check that later'. I'm supposing this is reference to the fact that I'm always there, all the time and nobody can remember the last time I was set free for more than a few weeks. I was then reminded by two people to 'call if i have a problem or if I feel unwell' and 'be sure to call if you're not right'. I call that cautious optimism. What's the worst that can happen to me?!

...oh wait, something about two mysterious blood clots and a dose of septicemia sound familiar alright...

PS: Greetings to (not my) Aunt Karen!

The Last Weekend...

2009-01-03T01:24:00.004Z

...Before I head back to college. I'm pretty excited that I only have 5 months left, which in all context is very little. And then I'm officially half way through my degree! Next year is when the really hard work begins, but I'll be pleased to get this year behind me. I got some college catch up work done the last couple of days (which is a first for me, considering I need a deadline with a cattle prod over my head to convince me to do work). I really, really, reallllly need to catch up on a lot of work I've missed so far this year, and the thought of sitting repeat exams at the end of the summer is definitely not an appealing one.

At the same point, I'm going to (hopefully) get a bit of work covered tomorrow, and then go down the country for the last of my Christmas break. In fact, if I time it right, I should be back up to Dublin within 15 minutes of my lecture- talk about getting the most out of my break!

Unfortunately - and I worry about how often I use that word in blogs these days - that cold (which despite still feeling really strong despite-can I say 'despite' twice like that?) seems to have travelled a bit. I seem to be experiencing asthmatic symptoms - wheeze, etc- but there is an undeniable rattle in my breathing at the moment.

I'm off to clinic this week anyway, so as I say, considering I feel otherwise great, it will be down to lung function tests to determine treatment. Let's hope *this* year will be the first year in history of having no IVs, but if I have to have them, then so be it. I'd rather be healthy and fixed than be breathlessly trying to make the point that I didn't need IVs in 2009 after all!

Besides, if I were Chinese, I would have until the 26th of January before the new year began.

And anyone will tell you, I've always been a fan of Chinese!

But what do they call their good china in China one wonders...

A New Year!

2009-01-01T01:02:00.004Z

I've just finished ringing in the new year here (Hootenanny!). I can't believe it's 2009 already - 2008 was a year filled with incredible highs and experiences which I hope I will never forget. My health was a bit naughty at times but thankfully, I am SO fortunate that overall, despite everything, I'm actually standing better than I was this time last year (lung function up, weight about the same!). And it is of course, because of the 'blips' in life we experience, that we are given the sight to treasure and appreciate the good times even more- they are not without their purpose.

I would make resolutions but for fear of feeling terribly guilty about not fulfilling them or sticking to them I won't. I'll make a 'hope' list instead.

As always I see the marking of a new year, the marking of a new beginning: a chance to make changes for the better or, a chance to identify the things we are doing good in in life and work at keeping them this way.

Life is all about balance - well for me it's the ever illusive goal (it has replaced the 'get my lungs to function at 100%' goal I was chasing after and which I attained last year). To find the happy medium between work and play, health and enjoyable risk, party and sleep, not caring about eating but still maintaining my weight, and a million other fine tunable boundaries, that's what a happy life is all about for me.

And if I could refrain from using cheesy mottos and expressions, I'd feel a bit more intelligent. But the puns can stay. I like a good pun. And bad jokes. Those too can stay.

Happy New Year! May 2009 bring you everything you hope for in life :)

S'all over...

2008-12-28T21:53:00.002Z

So Christmas is over, St Stephen's Day is over....alas it's all over. Until New Year's Eve and day that is.

We had a lovely, enjoyable, quiet family Christmas this year. It was nice to have everyone home and around the house.

The holidays have mainly consisted of watching films either on Sky or on DVD. I've started watching DVDs whilst doing my nebuliser now which helps pass the time as well as encourage me to take my nebuliser (which I honestly find theee most boring thing in the world). It's a tip I actually picked up from a small relation of mine who takes a nebuliser and who watches a 30 minute programme whilst doing so. Unfortunatly I can't watch Backyardigans though. Anyway, I only watch as much of the DVD as my nebuliser allows, so it's a bit like reading a book. So far I've watched Belleville Rendez-Vous and The Prestige- both excellent films.

I picked up some cold thing on Christmas day, but thank goodness I felt strong throughout its course. I prescribed myself some antibiotics to be on the safe side though. I had a collection in my medicine cabinet so I assesed my symptoms and prescribed accordingly. I feel a lot less coldy now and just a bit coughy but other than that am right again. Amazingly, it's the first cold of the year for me. Hoo-ray! (About it being the first, not the fact that I got one...)

Other than that, I've a heck of a lot of work to be doing right now. But inbetween crashing my car causing a money's lot of damage and eating the family out of a home because I'm hungry (maybe it's a form of procrastination), I've other things to do.

Hoping you had a great Christmas. xx

Merry Christmas

2008-12-24T21:01:00.003Z

...From my family to yours. I hope whatever way you celebrate it, and whoever you spend it with, that you have a great day filled with fun, laughter and love.

Santa is a funny fella...

2008-12-23T22:35:00.002Z

I was finishing off my shopping today (I've realised the weakness of the sterling pound vs the euro and admit it probably would have been a LOT easier to do Internet shopping but alas...) and overheard several tired, stressed out parents use Santa Clause as a good ole' bribe for their children. Nearly all of them spoke about him, in what I would describe as 'whisper spit' - that being low hushed voices that were very snappy.

I heard one boy whine about wanting something or other NOW, and the gentle mother turned around and said 'No, you can put that on your final list to Santa'. Final list??? When does the last draft go out? How many letters do children write these days? What if they forget and need express post and express post isn't fast enough? If this child was smart, he should probably completely change his wishes on the last night, knowing that the parents would have already fulfilled the original list but then would feel guilty that they didn't have time to get this new list sorted so all in all he'd bag a few bonus presents.

Oh, but that wouldn't exactly be the spirit of Christmas.

Then, whilst wandering the aisles of the toy shop, I heard one very loud mother say to her son 'Oh Jack, did you see that rocket jet set? Wouldn't that be really cool to get for Christmas?'. To which I heard no reply. And then she went on 'Wow, wouldn't you be reaaaaally happy if you got that for Christmas? That would be great wouldn't it?'. Again, I heard no reply, so I'm assuming Jack was a bit unenthusiastic and just shrugging his shoulders. 'What do you think Jack? Good isn't it?? I think anyone would be pleased to get that on Christmas morning....? '.

Now if Jack was good at analysing sales pitches in his head, he'd probably figure out that Mother had most likely purchased said overpriced, easily breakable, little itty bits 'Rocket Jet Set' for Jack already. After all, if she hadn't, wouldn't it be a bit mean to go on and on about it? I guarantee she wouldn't be so enthusiastic about it in the middle of April for example.

Then I heard another Mum say to her daughter 'If you don't put that back RIGHT NOW, Santa Clause won't come at all!'. What an impossible thing to say on so many levels. Again, these children should be thinking of their feet and try and work out logically how that would be possible. Does Mum have Santa's mobile number to cancel him?

But who am I to mock these children? I was told by two people when I was eight "about Santa". The facts laid out in front of me. And I refused to believe them.

It was only when I was ten (shockingly old I know!), and three girls were laughing at another girl's innocence in my class in a kind of 'Can you *beee-lieve* her?? Gah!" that the whole world turned to slow motion, as her words filtered through my head, all the pieces of the jigsaw came together and I meekly laughed along with them. Talk about peer pressured bitchiness!

Wait, now what was my point?

Oh yes, spirit of Christmas. And children....

Brrrrr

2008-12-22T15:47:00.001Z

Wait, it's not cold. It's 12-14 degrees here today. Or for Fahrenheit speakers, that's mid 50s. It makes no sense- it's Christmas time!!!

The Geek Not in Me

2008-12-21T21:16:00.002Z

I am the owner of a very nice Dell XPS laptop, which above anything else, is light weight and extremely portable.

Tonight I was carrying it up to my room and had it open. I held it like an open book as I walked up the stairs. When I sat down, the screen had rotated sideways. I tried shaking the laptop to get it back to normal. But no amount of shaking or swinging would fix my problem.

Instead, I (being addicted to the Internet for short periods) continued to go about my browsing in a most complicated way. The mouse work was what confused me the most. It was a bit like when you see yourself on a television screen in a shop and you're moving backwards to what you actually are....if that makes sense.

After about 10 minutes, I had the brainwave to google my problem. It turns out my stomach managed to press Ctrl + Alt + an arrow key to rotate the screen, which is pretty impressive. I just naively thought my laptop knew when to switch if it was hanging upside down.

Home Again

2008-12-20T12:46:00.003Z

My trip to Rhode Island was fantastic fun and to say I had a fabulous time with my super cousins would be an understatement. It's a shame that family live so far away, but I suppose it makes one appreciate it when one does get to see them :) Now, if I could just get a flight over to see my other cousins in England *then* all would be perfect.

I left for America last Friday and took two paracetamol tablets before my flight. I was very aware of my leg (what a weird thing to say) in the Airport and had the painkillers on the ready if I needed them. Amazingly though, I haven't had to take any pain relief since that Friday morning- bizarre!

I also finished up my antibiotics the day before my flight and feel super well now, which is great. Of course the fact that I had beautifully healthy meals cooked for me while I was away probably helped too!

I got a good dose of shopping in whilst away too and picked up some great things for the cold weather. I was going to shopping today since I'm up and ready and it's only lunchtime, but then I remembered it's a Saturday and the Saturday before Christmas at that. So maybe another time...

I'm a little bit yawny from my trip home but overall the whole jet lag thing seems to have passed over me once again.

I may stay in tonight and watch a film since we now have Sky Movies (how long was I away?). My sister is now home from hospital, no longer contagious, but still very, very weak (in my opinion), so maybe we'll watch a film together. And argue. It depends how much better she feels.

Up, Up and Away...

2008-12-12T00:29:00.002Z

I'm just about to go watch Grey's Anatomy, series 3 finale and then I'm going to bed. In the morning, I'm off to America for a week and I cannot wait :)

As it turns out my neighbours are giving a family member a lift to the airport so I'm hitching a ride with them. Of course this means I actually *have* to be on time. This also means, I have to be up early in the morning too. But I'm not complaining!!!

On the health front, my leg is really, really good (touch wood!). I took painkillers today in the morning and that was it.

My sister is doing a lot better too. I can't see her at the moment as she's in isolation, which is a real shame, but by the time I get home next week she'll probably be both better and healthier. I might stress here she is FINE and well on the mend! :D

Hope you have a nice weekend :)

Ahhh-It's half way through December!!

2008-12-10T22:39:00.002Z

Went to my final clinic for the year. CRP (infection markers in the blood) have come down to below 3, which is normal!! Lung function went up again - now 103% which I'm thrilled at, considering I thought I was coming down with a chest infection last week! I took no painkillers for my leg today- it is still sore to walk around for long periods, but I haven't taken any pain relief so that's a big improvement. I'll probably dose myself up with painkillers tomorrow since I'm satisfied there is a good improvement. College is nearly over for this term. Injections are going grand- I still wince and stick out my tongue and do them so slowwwwwwwly but overall, life is great.

Unfortunately, due to the leg thing, I missed my beautiful goddaughter's christening last weekend, as the pain was just at its peak. But I have plans to go over and spoil her soon.

In other health related spuds, if you could spare a thought for my poor sister who is still ill, that'd be great! Obviously, being a perfectly and unusually healthy person, being anyway ill is obviously hard. So especially now, she could do with good thoughts :)

And finally, because I should be reading, I thought I'd post this Christmas Quiz to pass the time:

1. Wrapping paper or gift bags?
Both but mostly wrapping paper- depends on my prepard-ness

2. Real tree or Artificial?
Real every year until transplant, now artifical. But you can't beat a real.

3. When do you put up the tree?
December...sometime....early...(this weekend just gone)

4. When do you take the tree down?
January.....sometime...early...

5. Do you like eggnog?
Em, never had it!

6. Favorite gift received as a child?
Anything Sylvanian Families related

7. Hardest person to buy for?
My sister

8. Easiest person to buy for?
Parents

9. Do you have a nativity scene?
Yes. Someone keeps sticking the Jesus in, even though he shouldn't be there since he's not technically born yet, so I keep taking him out. And then someone sticks him back in again.

10. Mail or email Christmas cards?
Em....I don't!

11.Worst Christmas gift you ever received?
I think I've been pretty lucky, or else I've banished any bad present from all memory...

12. Favorite Christmas Movie?
I'm useless at sitting through films on TV, but I guess Harry Potter is on TV every year and I like that....but that probably doesn't count as a Christmas movie

13. When do you start shopping for Christmas?
Disastrously late

14. Have you ever recycled a Christmas present?
I don't think so!

15.Favorite thing to eat at Christmas?
Ooooooooh, Christmas dinner with all the works- my Mum does a FANTASTIC Christmas dinner!

16. Lights on the tree?
Yes

17. Favorite Christmas song?
I love ALL Christmas songs! East 17, Wham, John Lennon, Band-Aid (the 1984 one), Shakin' Stevens, you name it!

18. Travel at Christmas or stay home?
At home every year.

19. Can you name all of Santa's reindeer's?
No- Dasher, Prancer, Rudolph...

20. Angel on the tree top or a star?
Angel - with one arm. Sad times.

21. Open the presents Christmas Eve or morning?
Christmas morning

22. Most annoying thing about this time of the year?
When people start talking about it in September, and then the 27th when it's all over. Or what kind of irks me is when people who aren't even remotely religious in any sense celebrate it, since it's kind of hypocritical of them, and I shouldn't really say that but oops I just did! But I guess if it brings people together then that's good too...

23. Favorite ornament theme or color?
In 1995, I made a teddy bear ornament out of dough stuff that was varnished, and that was my favourite, but then one year my dog ate it. So now my support lies in the one arm fairy up the top.

24. Favorite for Christmas dinner?
All of it

25. What do you want for Christmas this year?
I don't really want anything in particular (a new car ahem), but I love being with my family and if we're all healthy and happy, that's enough for me.

REAL Improvements

2008-12-05T23:28:00.002Z

I last posted on Tuesday saying how I felt that things were improving. So on Wednesday I moved back to taking just paracetamol. Whoah, I was wrong. Turns out the 'improvements' were merely the symptoms being covered up by taking so many Tylex tablets.

Yesterday, however, I felt I'd have to just put up with the pain as the side-effects from taking Tylex began to outweigh the benefits. They're rather sickening on the stomach.

As it happened, today overall was a much better day. The pain has decreased a great deal, and while I've moved to taking Solpadeine (which has paracetamol and codeine in it, but is available over the counter) I'm confident this is genuine progress.

Of course, with it being me, there IS always something. That 'something' being that my CRP (infection markers - should ideally be 0) were 25 last week. Luckily, on no treatment, they're down to 16 today. IV antibiotics were discussed in a spontaneous clinic visit today. But it's Friday, I don't do little cannula lines so really they were a no go. I took a combination of strong oral antibiotics instead.

My sister, however (normally perfectly healthy, no attention seeking illnesses or ailments for that one) has something along the lines of suspected mumps. I've been told to stay away from her, which to be honest isn't a big deal. However she's planted herself in the main TV room these past few days so that confines me to the other end of the house where there isn't too much to do. I'm beginning to wonder if it's a coincidence I'm suddenly improving!

Improvements

2008-12-02T16:22:00.004Z

Today I collected my Heparin injections from the pharmacy and administered my second shot. It was a bit nerve wrecking but I did it with minimal fuss. I worked out that three months' treatment equates to 93 shots. So far I've given two. So I have 91 left. In the grand scheme of things, that's not too many (imagine if I had to take it for a year!).

I'm finding today the pain is a bit less than it was yesterday. I'm don't feel the need of urgency to sit down after a couple of minutes of being up, and rather when the pain sets in, I'm able to stretch a little bit. There's still a good deal of discomfort but I'm seeing it begin to lessen (I think/hope). This morning I took two Tylex tablets which is more than I had yesterday. I had been warned about drowsiness, but I survived my 9am-11am class grand, but I was very distracted and then sleepy by about 1pm. But that could be because missus over here isn't overly used to 9am starts. Or it could be the drowsy tablets either.

So this is a bit of a nothing post really. I'm going to go work on assignments after my nap, imagine that, maybe I'm sicker than I thought!

Mystery Solved - It's a long one!

2008-12-01T17:24:00.002Z

My Sunday yesterday was a paracetamol popping one, as the mystery pain in my leg just wouldn't let up. My brother used to (or maybe still does???) have a problem with the cartilage in his knee and he'd sometimes put it out when playing rugby or soccer so there were crutches in the house which I soon found.

So after a miserable, sleepless night, I decided I'd mention the pain to the team this morning while I was over for bloods. Not wanting to appear dramatic by hobbling in on crutches, and with my leg feeling just a bit stiff this morning I decided to just catch a lift over and walk in.

But y-owwwww. It was y-ooowwww-some. The doctor happened to be standing outside the clinic when I arrived and said 'Ow, what 'appened to yo leg??' (He's Swiss). I told him I didn't know, but I reallllly needed to sit down. He examined it and sent me for an ultrasound.

When having the ultrasound, the girl was pretty quiet so I asked if she'd spotted the problem. She said everything seemed absolutely fine on the top of my leg. And then she moved down towards the knee and she went quieter (which is pretty hard considering she was silent anyway). And then she said 'Excuse me, I'm just going to get the doctor, I think I've spotted a clot there'.

So the 'mystery pulled muscle' is a clot. I feel slightly less stupid now. There's a 'Deep Vein Thrombosis' which can be dangerous or, there's the one I have, which is a superficial type. Interestingly the 'silly sore arm' was most likely related. I wasn't really paying too much attention, I just realllly needed pain relief.

The treatment is either Warfrin tablets for three months, or Heprin injections for three months.

If I go on Warfrin I'll need to attend a Warfrin clinic twice a week (I think?) and have levels checked, and I can't drink alcohol on it (which is the least of my worries). Unfortunately, the Warfrin doesn't really work out well for me in terms of being able to get to clinic twice a week.

The Heprin injections are pre-drawn up syringes, given once a day into my stomach. In terms of monitoring there's just a set dose, and I take it for three months. My stomach will be 'black and blue' by February and the injections will likely sting. But it will be my more flexible option.

So I went for the latter option. I administered my first Heprin injection this morning and of course I cried, out of frustration, out of leg pain and out of the fact that I couldn't get the needle in. So I now have three pink marks where I attempted it.

The best part is I was prescribed Tylex for the pain. It contains codeine so it's stronger than paracetamol. So far I've only taken one tablet with one paracetamol because I was warned if I took two Tylex together I could end up asleep on the floor, and with an exam in college this afternoon, I kind of needed to be awake (I'm more intelligent awake).

So I have the crutches, I have the painkillers, I have the treatment and so it's just a matter of being grateful that I'm able to have the aforementioned, and seeing it all through. And of course, grateful that it's not something more serious, and that for the most part, I can get on with my life.

Except that icey ground and crutches are NOT a good combination. Stay tuned for the 'broken arm' installment coming soon!

Balancing act

2008-11-29T23:49:00.002Z

The good news: I've had a great weekend. I went out on Friday, meaning to only pop into town for a couple of hours, coming home and having a nice sleep. In reality I got in at 3am. Such is one of the results of living life and having a good time!

This morning, I was up and dressed by 10.30 as myself and two guys from college were heading down the country for the afternoon to a friend's house for some college related work. In fact we left at midday as the driver overslept. The countryside (about 8km from where my Dad grew up) was a bit of an eye opener. I don't know how people survive living with nothing but fields around them for miles in every direction. Where is the MacDonalds??? So coming back up to the city this evening was a bit of a relief. (And I mean that with no disrespect for people who live in the countryside - it's just, I've grown up in a very limited little bubble which consists of a farm across the road, and the city centre 20 minutes away and every conceivable shop or restaurant down the road from me. And I don't do change very well. )

The bizarre news: I seem to have taken a 'step backward' with my leg pain (boom boom). I'm taking painkillers (beautiful, beautiful killers of pain) about twice a day for the pain and I'm having difficulty walking on it. I'm beginning to think I probably underestimated what I did over a week ago- thinking I merely pulled a muscle, I probably tore something or something equally ridiculous by placing my foot up on a chair. I mean who on earth lands themselves walking with a limp by putting their foot up on a chair for goodness sake??

The leg is slightly swollen (and obviously sore) at the moment. Post transplant, fluid retention (kind what very old ladies look like with 'c-ankles') is something to be taken very seriously. So now I'm questioning whether I'm swollen, whether there's an infection, whether I have fluid retention. Did I really just pull a muscle? When did it start getting seriously sore? Is this something that happens a 'normal' person, or is this because I have no immune system? Who do 'normal' people call when this happens? Am I being a hypochondriac? Should I just keep popping the pills and hope it will all just sort itself out? Have they ever performed a leg transplant??

[This is the thinky-thinky, waffle bit here now- you can stop reading here. Run.:] There is always a balance to be found when dealing with life post transplant. You push a little, you pull a little (I don't actually know what I mean when I say that, but I think it relates nicely here somehow). You have an obligation to do the most you can to take care of the gift you've been given which means you get yourself treated the minute you suspect you have an infection, a cold, a temperature.

And then you go out (actually, you stay in, work on assignments) and do silly things, which really in the bigger picture are just a tad embarrassing (I wasn't even exercising when it happened!) and you wonder whether it constitutes as a 'real' problem.

It's just one of those 'thinking out loud' situations which a lot of people don't really think about- someone gets a transplant- that's it, they're pretty much fixed right? Thankfully, for the most part, yes, but the thinking doesn't ever stop. And maybe it's that 'thinking' which ensures that all bases are covered so everything does stay fixed: For every ten queries ("Oh my gosh, is that a bruise on my eye?" "No, that's smudge mascara"- "Oh my gosh, why are my hands blue??" "Because it's cold outside"), you catch that one real problem. Better to be safe than sorry.

I just wish I didn't feel guilty about wishing I had crutches!!

Keeping them on their toes - even if I can't walk!

2008-11-28T00:52:00.002Z

So last week, I very foolishly pulled a muscle in my leg. I howled and felt rather silly. The next day the leg muscle kept seizing into cramps and releasing. The days that followed were ok, in that I could walk but it just stiffened up if I sat down or stopped walking. But yesterday the pain turned to a 'growing pain' ache, which I took to mean the muscle was fixing itself, regrowing etc. Except with all this 'growing' I couldn't sleep, because growing is a painful business. Which brings me to today, where I can't put very much weight on the leg, and now walk with a ridiculous limp! Except if I concentrate really hard to not look like an idiot/grandad, I can walk normally-ish.

So that problem, I live with - I know what caused it, and I know it will fix itself.

Now backtrack a couple of days, when lo and behold, my *arm* started to hurt. This pain was in my forearm and a rather stingy pain. I couldn't stretch my arm because it stung too much. It felt like a cannula had tissued or leaked in my arm (for anyone who's experienced that yeee-ouch feeling), but I couldn't pick a cause or pinpoint what was wrong. There was just a faint pink line which looked like it was following the path of a vein.

My mom wanted me to ring the hospital, but at the risk of sounding like a complete doofus ("Hi, em, I have a sore arm today, what should I do?") I refused. But today, whilst in college I went to see the nurse when the waiting room was clear. The nurse was most puzzled so charged me €10 to see the doctor. The doctor, who was also most puzzled decided to ring the hospital as she suspected I had Phlebitis (swelling of the vein). The hospital, who wanted to see me straight away. Grrrr.

So I left and went to the hospital. They asked me a few questions but I then told them that the pain was still present despite me taking painkillers. What was i taking painkillers for? Oh no, not the sore arm which I couldn't stretch, not the sore leg which made me walk with a limp. No I was actually taking painkillers for a sore, cramping stomach.

So basically, I felt like I'd been hit by a bicycle with a heavy man on top. And then to top it off, they couldn't make any solid conclusions as to what was wrong with my arm so I was sent home. And the worst part? I got a paper cut. Grrrrr.

I suppose I should be grateful there's really nothing seriously wrong. And grateful that someone invented paracetamol.

Mundane Monday (har, har)

2008-11-24T20:25:00.003Z

But seriously, phew what a mundane day. I have no 11th hour assignments to do so really I should probably prepare for those assignments which will ultimately become 11th hour assignements next week. If only....

Also, one of my best friends got to wear a gown and cap today as she was handed her degree in Economics and insert other subject here (if only I paid attention these past three years...). I haven't seen any photos yet but I am still very proud.

It gives me hope that I can someday acheive the same honour and get to wear the gown. And maybe the cap. Interestingly, anybody know why only girls have to wear the cap (over here anyway) ?

Answers on a postcard!