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!!

Home Sweet Home

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

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

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.