Observations

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

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!

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!

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

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

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.

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*

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

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

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

*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

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

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...

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

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!!