Saturday, March 29, 2008

Good Friday Again!

I'm still on Easter break, but decided to go to college on Friday anyway. Knowing someone in the know who also knows someone in the know I got to know to someone who knows. I had my camera but no memory card (ugh) but I got my hands on someone elses and got photos. Mr Tommy Tiernan, Whoop:

Friday, March 28, 2008

Baddier Thursday...

Well so much for the 'okay -despite crash- car'. My prediction for what will go wrong next: Driving on road, feel a shift, four wheels separate and roll off in separate directions and steering wheel will come away in my hands. Tsk the hassle of it all!

A heap of other stuff this morning made for a sobering day. It's funny, sometimes we rely on the compasses life gave us so much, despite the fact that they never came with a guarantee that said 'life is predictable'. You make certain assumptions about yourself and about others and then, WHACK BAM, life intervenes. You think "wow, never saw that one coming in a million years, ever". And then you consider that other peoples' lives, as happy and content as the look, as care free as they seem all have problems too. And although you can never know what goes on in somebody else's mind, you hope that, for a time at least, they were genuinely as happy as what the world looking in saw.

Wednesday, March 26, 2008

Baddy Wednesday

I'm still in the swing of my Easter holidays, although today was my first productive day. I actually opened up a word document this morning to begin a report due next week. It doesn't matter if it's still blank (except for when I was checking how to spell words throughout the day), the point is it's PROGRESS!!! Tomorrow, we type.

I learned today that my Tacrolimus levels (Tacrolimus being the immuno suppressant / anti-rejection medication/tablets I take) were actually HIGH last week! For those in the know, the score was 15.something. Which means I need to take less of that for the first time in a year. It's weird because it's not good to have abnormal levels, but at the same time my body is saying I'm getting too much immuno-suppressingness. So down the dose we go. Whoop?

And then the drama of my life, like ever (see title!) happened this evening. I was driving. I had stopped whilst waiting to turn right. I had the music in my car up, not at an exceptional level but some rock beat tune was bopping away all the same. I hear a sound and in two seconds my mind thinks the following:

Sounds like a car's brakes screeching
(Looking at radio) Oh no, it's just that song
(Look in mirror) Oh, that person's going fast behind me
Oh Gawd, they're gonna smack me
What's this gonna be like...

Followed by:


Now two things freak me out about this whole thing.

1. The accident wasn't that bad, but at the same time, the split second before it happened, I knew it was going to happen. I was dreading the sound of when she was going to hit and yet I couldn't move or react. So if it had been a terrible crash (we're talking fatal here - which I feel obligated to point out - it was NOWHERE NEAR), I would have known it was coming, that would have been my last thought. Freaky.

2. Although it happened on a bend on a hill, it wasn't like she didn't see me or was going too fast. She was in fact a learner and we heard the brakes going which meant either her brakes didn't work or her tyres had no grip. Either way, I was half way down the hill, had I NOT been there, she could have kept on going down that hill, gathering speed, and the accident would have occurred when she reached the crossroads which one doesn't even want to think about! Now I'm not calling myself a martyr (oh who are we kidding!!!!), but it could have been a lot worse.

The noise of the bang was terrible. It lasted a second and the glittering silence afterwards was a relief. Me and my sister had been arguing just before and as it happened (hardly surprising), so it almost had a 'Home&Away' feel to it really (although I wasn't fiddling around on the floor looking for a tape and consequently didn't end up in a river and nearly drown which has been known to happen down on the bay), but we did hug afterwards. The most important thing was that everyone was OK. There was actually hardly any damage except for the hole in my back bumper thing which although will be a price to fix, considering the impact is actually pretty miraculous.

I felt TERRIBLE for the poor girl who did it though, I really did. She was just so shook by it all and there was nothing I could say except to reassure her I was fine. I know if I was in that position though I'd be the same. I even feel so bad for her now. I'm going to text her tomorrow to check she's OK because yikes it's awful to see someone in that state.

So we'll call this Baddy Wednesday, and hope that it won't happen again. Ever. Touch wood and appreciate life.

Friday, March 21, 2008

Goody Friday

I'm off my antibiotics at last and have been given a bill of good health (touch wood, bang head etc). My only problem (yes, I can't resist being centre of attention) is that my second belly button- the site where my feeding tube was removed last year- has been acting up and my Mum, who has been pestering me to mention it to my team for ages, told me to "REMIN.THM.A.BOUT.TUMMY.THING" (she's not used to texting off the house phone) yesterday which I did. I thought they'd tell me it's fine and normal, but in fact they've ordered an ultra sound, followed by a CT scan with contrast if the ultra sound shows abnormalities. Goodness! I probably should have told them about this a while ago...

And then I slept yesterday for a total of 17 hours (go me!) and I hope that's my 'jet lag' from Switzerland dealt with!

Switzerland was fantastic, I had SUCH an amazing time. Admittedly I should have either had more lessons before I went or just not bothered forking out for lessons at all as they didn't do me much good. Luckily my 'kinda' cousin who has skied down volcanoes in Russia (!!!!!) helped me out a great deal and I got the hang of parallel turning (which I swear I knew how to do last year) on the last day. I'm going to keep going skiing somewhere every year until I get the hang of the bugger as I hate not being good at something that I try. Except for snowboarding - the concussion taught me that.

I was a bit of a drama queen the first day when I fell as I heard the ski binding snap and immediately thought I'd done something, at which point my head screamed "altitude, altitude, don't panic!" at which point I panicked internally. And then when I started skiing again, I couldn't catch my breath properly and my legs hurt and all that was missing were the violins.

And then the next morning my knee was so stiff it kept twinging when I moved, which meant I couldn't even go skiing that morning and my Mum thought it was because of the 'fright' I got the day before. Which it wasn't! And I might add here that I am convinced I have some sort of joint problem or Arthritis of some sort as lately my hip ACHES when I walk for a period of time, but that's for another doctor's appointment.

So I chanced it and went up to the slopes that afternoon and felt much better.

To thank my 'kinda' cousin who has skied on volcanoes, for all his help, we bought him a ridiculous green hat.

Verbier is an incredible place it must be said, and our "Woodland" family were so hospitable and kind and generous. I know there won't be enough space on my 'thank you' card!

Thursday, March 20, 2008

I'm Back...

...In one piece!

I did manage to sleep in this morning for my clinic appointment - they didn't seem too fussed when I rang them so I'll go tomorrow instead.

Thursday, March 13, 2008

Wish Me Luck!

I start school tomorrow - ski school that is!! (I know BF will appreciate the 'ugh'ness of that 'joke') I'm getting up in 2 and a half hours to get ready. We begin our trip up north and flying out from there.

Five years ago, I went up to learn how to ski with my school as some of them were going to Boston on their ski trip. I wasn't going but wanted to try it anyway. I missed my first lesson as I was sick/had clinic and my PE teacher came to me and said I wouldn't be allowed to continue unless I made up that lesson on my own time before returning for the second class. That same PE teacher always had this thing about me and my CF and never seemed to 'get' it, I always seemed to be 'faking' to her. Terribly unreasonable that one. I could go on but maybe another time.

So needless to say I didn't bother going up for a lesson by myself, on my own time and decided to just wing it. Anyway we ended up in the same class the second week and that instructor was incredibly understanding and didn't even question WHY I was absent. She thought I took to it well (better than my PE teacher who had her eyes constantly on me and who had zero coordination, so ha) and I progressed well. Although I wasn't going to Boston, I was motivated to try skiing again some time.

* * *

Two years ago, I approached my physiotherapist about the possibility of going skiing and she said because of the altitude, I could only go so high and I'd obviously need to use oxygen tanks all the time, and I'd need to be 100% fit of course as well. Now being able to plan a trip in advance and knowing I would be 100%, when my lungs didn't function and I'd get an infection every 10days or so meant that the odds of that happening were.... about as good as my lung function (circa 22-30%).

Ever the optimist I questioned her about the 'ifs' and 'ok, but assumings' and she said it could be possible. My hope raised at that and at the end of the conversation I said to her 'OK, now I won't be hurt, but honestly, in your opinion do you think it's possible...I want the truth.'.

Her head turned and she made about 10 facial gestures in a second concluding in a weak, apologetic smile and replied "no".

She was right of course.

But that's all in the past, as tomorrow I'm getting to finally ski. Considering in the past I've been known to break my arm, have the cast removed and on the same day break the other arm, a bit of luck may be needed!!! Toodle Pip! x

Tuesday, March 11, 2008

Changing Days

This weekend is Paddy's weekend!!! Saturday to be specific! Someone (the Church? Government?) changed the date of St Patrick's day to the 15th this year as it (the 17th) clashes with a Bank Holiday on Monday. Or it has something to do with Easter, I can't remember exactly which one.

Anyway being the incredibly patriotic family who never once stood in the rain watching a misreable parade going by, it's no surprise that we won't be here this year. I suppose I'll muster the energy to wear something green. Maybe.

I have a useless memory for these sort of public holidays, and weirdly the only one I rememeber 'celebrating' was when I was about 12. I was in hospital and I wore green eyeshadow (I was passionate once) which led the nurse to thinking there was something wrong with my eyes. I'm guessing I looked like a clown, but when I was 12, I don't think knew the word 'subtle' . Anyway, that year, we went and had pizza in pizza hut. I don't know why that sticks in my mind so much. Maybe it was the fact that my Dad in his best voice, asked for 'An-ko-vies' instead of 'anchovies' on his pizza.

How random.

Monday, March 10, 2008

Update/Downdate on Me

This is more 'olds' than 'news' but sera-sera. Last week's appointment (the one with the wacky bus drivers who neither wanted me to get there or wanted me to arrive home) showed a similar very good lung function (approx 98%) to the last one measured; the finer points were down but by so little that that could be contributed to anything (different machine, different room etc). So where to now?

Well to the Rhino Horn we go. I only do this Rhino Horn yoke for my sinuses about once a week at MOST! So I have now increased it to twice or three times a day, and one 'horn' per side. Which totals four to six uses per day. Then I have to do colomycin nebulisers twice a day with that.

I'm also on Ciproxin and Azithromycin tablets to help and I'll take those for about 2 weeks.

So where to then?

Well being the lucky person that I am, I'm off skiing in the Alps at the end of this week so at the mention of IV antibiotics, I explained that...I'm off skiing in the Alps at the end of this week so that was a no go. He (Doc) was happy to do the above treatment first anyways.

SOOoooooo, the day after I come home I'm into clinic (they want to check if I've been sunbathing I suspect) and decisions will be made then. I can't see IVs physically working as I have no veins for one week of treatment let alone two, but at the same time I'd definitely be up for them as it would mean hopefully getting a clean slate and clearing all that stuff out. Plus I'll be on Easter break so it's not like I'll be missing much.

With my last project in for the year due tomorrow (how amazing that I've missed NOTHING this year??) things are beginning to relax slightly. So all in all, we concentrate on the here and now, and at the moment the most important thing is that I work on not putting my foot into it in social situations as I seem to have acquired a talent for doing that lately. It's hardly related to my health but at least it's something I can control!!! Toodle Pip!

Thursday, March 06, 2008

Mysteries of this world...

A comment was made yesterday asking about the person in my class who only had one arm. They asked why said person was wearing two gloves. Good question. Another person said it was because said person might not want to make it obvious, but if you're only carrying one pole, then, you's obvious.*** But huge admiration to the person, I can't imagine it's the easiest thing to do something as physical and balance-required as skiing with one arm. So that's one mystery.

2nd Mystery: The 46a bus.

In past, I referred to the 46a as a reliable old soul of a bus. It goes up near my hospital (where I was this morning) and I'm always the last person left on it on such days. The bus driver has, in past, driven me up off route nearer the hospital to be nice and I would think "Oh how nice".

But today?! Did someone slip something in their tea???

I was told by the 46a morning driver to get off, because I was the last passenger left and he was "heading back into town now". He didn't complete the route!! He'd obviously forgotten about me and had his mind made up. I was like "doesn't this bus go up there???" and he just told me "em...well...I'm going back into town now, so you'd better get off here". Rudeness.

And then something even MORE bizarre!!

On the way home I was on the 46a, going down the dual carriage way when I notice the bus driver is beginning to get anxious, making frequent telephone calls to someone. He muttered swear words and rapped his fingers on the dash board. Then on his last and final phone-call he said

"There's nobody else around me....I have to go...I have to go!!!"

Being near the front I had a good ear's reach of the conversation and the man on the phone said "OK, turn off the engine and tell the passengers. And turn OFF the engine"

"Well what will I say?" panicked the bus driver

"Just say something about an emergency". replied the man in an assertive tone

So the bus driver takes a deep breath. Steps out of his booth and says:

"Ladies and gentlemen, I'm sorry....this is an emergency".

Opens the doors. Gets off. AND RUNS AWAY!!!

We watched with confused faces as the bus driver dashed through a car park, reached a bank...and ran inside. And never came back. Ever.


Being ever so witty I said "Does anyone else know how to drive a bus?" and to my shock I heard a woman say "Doesn't Phil droive buses fir CIE?? OW buh isn it his day offf taday?"

So we sat. And sat. Andddddd sat. One idiotic lady got on, and paid and then went and sat down(!).

I cleverly spotted a bus behind and hopped off and hopped on that one. Selfishly I didn't tell anyone else and they all watched with sad faces as my new bus overtook theirs wishing they were as clever as me (as I?).

Anyway, I'll always wonder what happened to those people, where that man went (my mum suggested it might have been he needed the loo) and if he ever came back.

*** I should really tell the story about my aunt who parked in a disabled spot for convenience and then lied about having a fake hand to the tickety man and then made her hand (in glove) move in a mechanical fashion to make it look like she had a wooden hand, and then the suspicious man let her off. But that's for another day.

Monday, March 03, 2008


Well skiing wasn't cancelled, in fact we had our lesson on 'snow' which in all honesty was more like ice. Slippy scary ice. But ...

Can someone please hand me a hearing aid, a paper bag for my head, a hole to jump down, the ground to swallow me up...anything!!!

We were practising leaning all the way forward on our skis, with our poles outstretched when the instructor noticed someone only had one pole. She asks:

"'X', why have you only got one pole?!"

What I heard:

"Emm...Because I've only got one pole".

I laughed, because of the cheekiness of it. I mean talk about back answering!! It was funny. If you'd been there you'd have laughed at the blunt honesty too!

Except I heard wrong.

What was actually said:

..."Because I've only got one arm".

Whether the Weather be cold...

Or whether the weather be hot; Whether the weather, whatever the weather, whether you like it or not.

It never snows here....ever! It rains. Constantly. The only difference between winter and summer is the direction of the rain. But now it's snowing!!! Did I mention it never snows here?! Now most likely it won't stick, it'll be gone by the time I've clicked "Publish Post" but still, it's ever so pretty.

Now I know where some of you out there live, you can have your snowmen over for tea but here, no, so let me have my moment and don't tell me how great your igloos are.

The funny thing? I'm going skiing in an hour. To ski on DRY slopes. What do you want to bet my ski lesson will be cancelled due to the fact that it's snowing?