Wednesday, January 30, 2008

Broken Laptop

I bought my laptop back in 2005. Bebo was only getting started and YouTube didn't exist. It's over 2 years old and on its last legs. It has entered its retirement stage now.

Today the 'V' key fell off. And the 'B' key and the Spacebar. The whole spacebar!!! Now I may have been partly to blame but it kept getting stuck so it needed fixing.

Now it's just broken. The 'v' key is sitting on the table so I have to press the gap where it should be. Annoying since my email address has a 'v' in it.

The Spacebar is back on on one end. The other end is still sticking up and loose.

Then last night the battery died permently. I went on to buy another one but they don't sell mine anymore. I'm beginning to think I should just buy a new laptop.

I suppose I should be grateful that it's not acting like my broken-ish phone. Sometimes that just decides to turn off and refuses to come back to life. Until 3am and it starts making alarm noises, that can't be switched off because it can't be switched on.

And don't get me started on the musical sock. It was a Christmas themed sock so it was a Christmas jingle. Oh God the sock, the SOCK!!! The one we lost but it kept singing away anyway. In that 'battery dying getting sluggish' mode.Again and again and again. In the middle of the night. Sent my Dad mad(der)!!

It eventually turned up in the utility room under the dresser. Who'd of thought to look there? I think my Dad took the hammer to it.

I think I'll marry a robot.

Tuesday, January 29, 2008

Regarding Yesterday...

...I passed!

That means I can start going back into my old reliable driving habits again, yay! I *hate* having to drive "properly" - you know what I mean. Don't argue, because anyone who drives (manually) knows it is actually far safer to coast.

Monday, January 28, 2008

Update on me

I'm doing rather good at the moment. I'll be calling to the hospital at some stage this week as I've got a rather annoying chest infection again. Ciproxin followed by Augmentin Duo hasn't had much of an effect so I'd be curious to see where my lung function stands and to see if either the chest infection or the subsequent tablets have had any impact on it.

I joined the gym and have been following a programme made out for me. It involves 15mins on the treadmill, 15mins on the bike and an assortment of lifty things that work on all sorts of parts of my body. I'm not sure exactly what, but all I know is when I do any of them, my muscles shake like jelly. I think that means I have a bit of a way to go before I'm Arnold Schwarzenegger just yet. I've been managing to go up every second day for a workout. Friday was my first 'slacking' day since I began, where I just didn't have the energy to keep going and stopped on the bike. This may be related to the chest infection as I had a pretty crummy Saturday.

I've got my dreaded driving test on Tuesday. Note the word 'dreaded'. If only I could drive then I'd be able to pass. I'm on an excellent website at the moment which is really helping me to minimise the faults I can get marked on, but at the same time has me freaking out because it's rather clear I'm rather unprepared. Rather.

Did you know, on "Reacting Promptly and Properly to Hazards" bit one can get marked a fault "Where an applicant splashes pedestrians with surface water.*"!!!!!!!!!

I hope everyone is well and dandy,

Love Froggay...

*Does that mean I should use bottled water instead?

Friday, January 25, 2008

A Boy Called Alex

...was a documentry about a guy called Alex who is so incredibly talented and a fantastic musician. He also has CF. He attended Eton and the programme followed him as he prepared to conduct a performance of Bach's epic choral work, the Magnificat.

Watching him and the documentry was kind of weird as it's a bit like watching yourself in so many ways. He reminds me a lot of myself in the years leading up to my transplant, except for the whole musically talented bit that is! Everything from what he was saying about his own health to how he in a sense wanted to 'put aside his illness' was so familiar.

When the show began I thought that it was going to be a bit 'dramatic' and that he wasn't actually as sick as he was going to be portrayed. You know the way in the media CF is a 'You Could Die Tomorrow' sort of thing and then the subject is actually incredibly well! But it was fairly accurate I felt. Alex a week(?) before the concert ended up in ICU fighting an infection. I always feel that the word 'inspirational' is used too causally, but this guy would be someone who would make my very short list

And as well he came across rather modest too. I mean with CF he could easily exploit that and become a 'musical cf-er' or even a 'professional cf-er' (as in he tours everywhere as the boy with CF who is a prodigy) but he doesn't. Not at all.

Below are two videos, the first is the add for the show. The second is of when Alex got cosy with Richard & Judy and just chatted to them about the documentry. They even seemed taken with his charm! For anyone who cares, he mentions his lung function is about 50% which his mother and he somewhat laughs at. I know in the programme at highest it was 35% so I'm guessing it's about that.

If you missed it and have access to More4 I believe it will be repeated on Wednesday night.

Sunday, January 20, 2008

Friday's Joe Duffy...

Click Here for Friday's Joeeeeee Duffy show. On the right hand side, select "listen to latest show".

The show is about an hour long, and understandably not everyone has that time to listen and some might not even be particularly interested in the topic. I would urge, push, and really encourage you to click the link, and when the player opens, skip (drag the bar along) to the 1hr 06mins in. They play a collection of the clips that sum up what this has all been about.

In this show they had two girls with Cystic Fibrosis in the studio (seperate rooms I might add, more than what they could get in Vincent's Hospital) who spoke incredibly well.

The HSE (equivliant of NHS) say that Vincent's Hospital have blocked their attempts to put in an interm solution to this problem.

Can people stop playing games and power struggles and just give the patients what they NEED please?

Thursday, January 17, 2008

One Day!

I lasted. I couldn't have predicted the national coverage that began last week focusing on the NO FACILITIES for people with Cystic Fibrosis in this country, which is why I'm blogging today.

Pasted below is the great article which Orla Tinsley wrote in the Irish Times. Orla has CF like myself, and Bobra, Orla, "K" and myself (ALL with CF) actucally shared a bedroom for about two weeks when we had chest infections in 2006. What was it they say about Cross-Infection? Well maybe when we are at our sickest and most vulnerable that issue just magically goes away...

This article sparked what has gone on in the past week. You can listen to the Joe Duffy show by clicking here. Click on "lastest show" (from today) or select the podcasts for the other shows. Some of it is truely heart-wrenching though so be warned. The 'Joe Duffy Show' has been running for years and NEVER has a topic run for two days in a row. Here we are on Thursday and this has been on for a week. Do have a listen though.

Give cystic fibrosis sufferers a chance at life

Orla Tinsley

Just before Christmas my friend asked me if I could have anything in the universe for Christmas, what would it be? I said Johnny Depp and a chocolate fountain, because I didn't want to say what I really wanted, it was too depressing, writes Orla Tinsley .

What I would have given up my next few Christmas presents for was a cystic fibrosis unit. It sounds like such drivel, but I have never wanted anything more.

On St Stephen's Day, 2007, a girl I didn't know called Tammy died. On December 29th, 2007, a girl I did know called Barbara died from the same condition, cystic fibrosis, a disease affectionately referred to as "the swine" by Barbara. Tammy was 18 and Barbara 24.

Cystic fibrosis is a genetic disease that causes respiratory and digestive problems, osteoporosis, diabetes and other complications.

It's a multi-organ disease and in Ireland there is a 1 in 200 chance that two people who have the gene will have a child with cystic fibrosis. We have the highest incidence in the world and I was one of those figures. I am 20 now and one of over 1,100 people in Ireland living with it.

At the end of November another girl I knew called Tracie died aged 24 from the disease. Her death got one column "Tracie feared if care would kill her" in a newspaper.

That was the weekend after the death of socialite Katy French. In any situation it is devastating to lose someone so young but I found myself not talking about Katy like everyone else, because secretly I felt guilty at the anger raging inside me. Of course it is tragic that she died at 24, but to watch it reported and debated so exhaustively wore me down, so much that I felt like arguing about the girl who has been called "intelligent and caring". I never knew her but I was envious of her, or rather the coverage she got after her death.

It made me feel for Tracie, who played music with Phil Coulter in New York, and her family, when she died from an illness she couldn't control. I also thought about my dear friend, sports enthusiast and all round charmer Damien who passed away last year and for my magazine editor, scientist and encyclopedia of knowledge-friend Jean, who passed away last March. I only got to two funerals, and that's just 2007 and just the people I knew of.

Progress has been made on the issue, meetings are being held, talks are ongoing, but we don't need to hear about meetings and conversations. We need a public commitment, a promise that we will have our dedicated unit, and we need it now. As the public mourned Katy French and the lens on cocaine in Ireland started to get focused, I thought wildly that maybe if I got engaged and broke up with a slightly well-known person, did some lingerie modelling and then died, if I fought off my illness long enough, maybe something would be done. Maybe the Taoiseach's aide-de-camp would come to a cystic fibrosis funeral and see something he would remember, something that he might report back. He might see friends and family congregate, he might hear Leonard Cohen's Alleluia or Tina Turner's Proud Mary, funeral songs chosen sometimes years before the funeral took place.

He might see some lucky transplant recipients hovering outside the church waving and mouthing words from a distance to their still suffering friends, that they can't mix with anymore for medical reasons.

And we don't like that word suffering in the cystic fibrosis world, but we are suffering. Watching three of my friends die last year and going on to their tribute pages on Bebo hurts, out of sadness for the event and a personal fear of the unpredictability of life. Each of these people had just as much life as Katy French, and they were making their way through science, through selecting hurling teams, through study. Privately and steadily they mapped their future in a country that seemed to deem them insignificant. It makes me feel like I need to give up college and get out there and smile for every photo, tirelessly self-promote because physically I cannot do both college and public relations, but maybe if I did then people would notice the tragic ignorance of our Celtic Tiger. A television programme did a segment that linked Katy French to other celebrities who died young like Marilyn Monroe and James Dean.

It made my younger cousin tell me all about the model she never knew until she died and how her classmates are now infatuated.

Maybe it is better for her to be infatuated with the glamorised death of a model than with the gritty realism that people like her cousin are dying, because that is what we are teaching our young people today - get famous and you will be remembered, if you are famous your death will matter.

People with cystic fibrosis take drugs too, see tireless parties of doctors and nurses and medical students. We drink cocktails, inhale and pop pills everyday, but in a different way from other drug users. It is all relative and people need different things at different times in their life, some people say they take cocaine to feel the buzz, to feel alive.

I feel very much alive and now I would like the buzz of knowing that the next infection I get might not kill me; that I could have my own room in hospital instead of risking infection from everyone from psychiatric patients to those with broken limbs and common colds.

I would like the buzz that can only come from decreasing our mortality rate from cystic fibrosis which is drastically ahead of Northern Ireland, Britain and the US, in this, the country with the highest instance of the disease in the world.

With cystic fibrosis I cannot choose when to take drugs, shoot up some insulin and I cannot change my fate. But my life and that of my friends can be prolonged. I can also prolong the time I spend out of hospital by ensuring my time in there is well spent.

It is simple: We need a dedicated cystic fibrosis unit with fully-trained staff who are knowledgeable about the disease, not a bed where a nurse tells you that your cough is strange; that you're too young to be on so many drugs and with whom you have to argue for an hour before you get the particular drug you need.

We need our own isolation rooms with en suites so that we can get over whatever infection we have caught, whether that takes us two weeks, three weeks or two months.

We need to know that we do not have to worry about the person with MRSA in the other room infecting us by using our toilet, that we do not have to worry about being heckled for opening the window or being moaned at for vomiting after an operation. We deserve freedom from infection and from the poor, confused woman who you constantly have to guide back to her bed because there is nobody else there to do it.

We need somewhere you do not have to endure someone else's blood on a tray containing intravenous drugs.

Cystic fibrosis will eventually defeat me but there is no way it is happening yet.

A degree, some travelling, maybe falling in love would be nice first. Or maybe I will become a lingerie model. The possibilities are endless if only the means were there.
© 2008 The Irish Times

Saturday, January 12, 2008

OK, Apologies

I'm taking a break from blogging. I will be back but I need time to just go away from here for a while. I'm telling you all because I know that often I see blogs that have cobwebs on them and I get annoyed because they didn't say they were going off!

I tried to make you all readers but it seems you have to have blogger accounts which would just get messy and to be honest it's a bit to ask!! I mean it's such a hassle!! I have quite a few of your addresses so if/when I do reactivate this I will hunt you down and make you read send you an email alerting you!

I hope that you all understand. And I thank you for being so loyal and reading this from time to time. I expect my return ticket will come eventually. I mean I never blogged about the driving instructor who couldn't fit into my car, or the WHOLE fact that my driving test is in 10 days and I don't know how to reverse around a corner - which I really should know how to do because that's a REALLLLLY useful thing to know how to do (?!). Never the decisive one, I will decide what to do long term then.

So thank you to each and every one of you. This will be turned off on Tue/Wed. To be totally cheesy (because this blog would not be in place without some cheese):

"...and if I don't see ya, good afternoon, good evening and goodnight."


Saturday, January 05, 2008

Have you been listening?

I'm going to make a quiz. Why? Well, one of the reasons why I keep this blog is because I for one am nosey and I like to read about what other people do. I assume I'm not alone so if being nosey, you can manage to learn something, isn't without meaning to? Therefore, a GOOD thing?

The aim of this blog is to write about me (well duh, I hope you've been listening THAT much at least!), but to highlight the positive results of what a transplant can bring while doing so (Do you carry a donor card?).

I have Cystic Fibrosis. Often if you have no association with a condition, generally your views may be misguided or just dusty, perhaps it was one of the things that 'Betty's niece's husband's nextdoor neighbour's.... dog had..once', or maybe you know/knew nothing about it at all. Hopefully this blog helps to dispel some myths and show that a life is actually possible despite this! And if you haven't noticed, then I take that as success as you've forgotten I even have it. Maybe not. I definitely would be classed as a 'doom and gloom' story, becoming rather ill, rather young, however as somebody once said "Life has no limitations, except the ones you set yourself".

So I will ask a question every day for the next week or so and will deliver the answer the next day. You don't have to answer 'out loud' or in the guestbook or anything. It's just a bit of...competitiveness fun!

The first (entirely unrelated to anything, but one I like):

Which is heavier, a tonne of feathers or a tonne of rocks? (I don't know if that should be 'ton')...

Friday, January 04, 2008

Gross Out Photos

*Warning* *Alarm Bells* *Sirens* Below are the long awaited, muchly anticipated, ever promised photos and images of the removal of my Mickey Button, Peg Tube, Gastrostomy Button, Feeding Tube which was taken away months ago. Those names are by the way all referring to the same thing. Although the official term would be 'Mickey Button' or 'Gastrostomy Feeding Tube' different people call it different things. So sue me!

I know they're not EVERYBODY's cup of tea (warning, put the tea away), but this is to be educational. If you're on dial-up there's a warning for you guys too. For those who are not familiar with MY history, I was tube fed for about 17 years. Then I got a transplant (did I ever mention that I've had a transplant?!) and miraculously I learned the art of sustaining life by eating food.

OK, so that's me lying on the bed discussing the method of removal. The dude's suggestion was for HIM to just WHIP it out!!! Ouch. No thanks. I told him I always changed them myself (with my Mom's help). He was a bit surprised. This picture is to give you an idea of size. I think I had one of the bigger (biggest) sized Mickey Buttons (18 French):

And the close up:

When I first had the Peg Tube inserted (when I was about 4 or 5) it was nearly above my belly button. I'm guessing 12 years can make these things move...The PEG tube is the long tube they insert first to create the hole. Back in the day, Mickeys didn't exist so I had the PEG for about 2 years first.

That's me taking out the water which holds the Button in place. Basically, when that tube comes out, what is left is a hole, that goes directly into my tummy. Scary. Hence the large amount of tissue ready to catch whatever might come out once the plug is...unplugged:

And that's him coming out. I mustn't have had a very big breakfast. I know, I really shouldn't make this any more disgusting than it already is.

Out! I don't know whether I'm smiling because I was saying to the Dude "See, I COULD do it, so ha" or because it was gone...

I still have it in a little jar. It was in my room until Christmas when we tidied my room. I hope my Mom hasn't thrown little Mike out.

I no longer have blonde hair.

Wednesday, January 02, 2008

New Years and All That

I firstly wish you all a very happy new year. I hope that this one brings you all of what you hope for (well some of, let's be realistic, I don't see Colin Farrell in my driveway any time soon...). I hope that first and foremost 2008 is a better year then 2007. I hope that we can all become better people and the world treats us better too.

I apologise to my girlfriends for backing out on you all on New Year's eve. I know that you guys understand. I ended up staying local, going to a friend's house and playing Buzz until 5.30am. I thank you guys for taking my mind of everything (you know who you are).

I have a few resolutions made. I'm joining the gym. Har har I know.

And I'm going to become a nicer person. :D Or try to...

Tuesday, January 01, 2008

Goodbye Barbs

I went to a bit of Barbara's funeral on New Year's eve. It was sad. Very, very sad. In fact I was a blubbering whale of a mess. I met some of her lovely family, some of whom I remember from the old days. It's a shame I couldn't get more then two words out of my stupid mouth though- that annoys me still. I have not lost such a good friend before and so I have no experience of these whole losing people shenanigans. It's hard though. Very hard. I guess I had imagined that I'd be one of those people who would simply remember the good times and be able to laugh about them. You know, turn that frown upside down and all that! Probably a bit naive of me I suppose!

I hold on to the memories I have and I hope some time soon that will become the norm. I think it's just too soon for me now. Luckily for me, Barbs was the kind of person who generously left me lots of good memories. Barbs kept a blog too. Not like this one, I mean a proper 'say it as it is' kind of blog. No waffle. I've been reading it and rereading it. Some of it makes me angry for a number of reasons, and the other just makes me feel....sad. And other bits make me smile.

Already there have been a few occasions where I'm almost at the point of picking up my phone to text her and then I remember. I said to a friend one day that I regret not saying stuff I wish I had have said. And that perhaps it's now that we know there's no way we can go back, the finality of death makes it so real that that opportunity has passed. But wisely she pointed out that most of the time, that kind of stuff doesn't need to be said anyway; they already know. I hope that's the case.

I think if I could invent any mad invention it would be some sort of window where you could go up and see everyone who has gone before us. I know there's someone that all of us would like to have just one more glimpse of. You wouldn't even need to be able talk to them, just to be able to press your head against the glass for a few minutes and see that they're OK would be enough. Just for them to turn around for a second and give that knowing smile that they're fine would do. Before going back to bungee jumping or whatever they get up to. But I'm sure that they are fine.

I know that this loss is nothing compared to what her family and close friends are going through though. How could it be? I would imagine the absence of such a critter(!) shouts speaks volumes. They say that "Some people come into our lives and quickly go. Some stay for awhile and leave footprints on our hearts, and we are never really the same again". Well I'm pretty sure that we all have pretty deeply engraved Nike Air Max (I think I saw her wear pink ones once...cloudy memory here though) ones which will always be there.

Thanks Barbs. You are a true superstar. And I was only joking, if you want to haunt me by throwing spoons, please do! But don't friggin hurt me!!!