Sunday, September 30, 2007

Here we go again!

My throat is sore tonight, boooo. It's something about having a day off where my body goes into Attention Seeking Mode and finds some ailment for me to complain about. And it's blinking annoying. I have transplant clinic on Tuesday and I'll end up saying "well I'm ok..except now because I have a sore throat, but apart form that, the last couple weeks have been ok..oh except 1o days ago when I was on those IVs for that nasty chest infection which lowered my lung function, and for the month before that on those useless oral yeah, apart from all that, I'm ok!". Not even *I* can except them to figure how to deal with me on that one. The worst part is not being able to talk. What am I supposed to do during lectures?!

I've always talked through classes from when I was a tiny tot. I must annoy everyone by doing it, but I can hardly sit speechless for hours upon end, now can I?!

Surprisingly though, I developed a 'talk and listen at the same time' method from a young age. I have an uncanny ability to natter away and subconsciously be aware of what the teacher is saying at the same time. It used to frustrate teachers no end, when they'd suddenly pick on me to answer a question, expecting that I'd blush and say 'sorry?' and they'd say 'you see! You weren't listening, pay attention!'. They'd have to settle for a "well, you got lucky...uh...stop talking!".

At the age of eight, I was in third class and the topic we were working on was houses. I was talking to the person beside me when my name got called. My head shot up, I glanced at the blackboard, down at my book and having heard "types of houses" moments before, I guessed he was asking me what style I lived in. To be sure, I asked question back,

"What type house do *I* live in??" I said, making it look like I was half thinking about my answer

"That was the question..." he replied in a smart arse way.

As I hummed and hawed, I peeked at my workbook, and spotted the house that looked a bit like mine.

"Detached" I said firmly.

"Wrong" he replied as though the word had been bouncing on the tip of his tongue from the minute he pounced on me. He walked away, continuing to prattle on to the class about types of houses (is it any wonder I was distracted?!). Confused I looked back at my work book. My house didn't resemble the terrace house picture, nor the bungalow and it certainly wasn't a house boat / boat house. No, it was definitely the detached one. Or the semi-detached one, but, no, it was the detached one, for sure.

"Emmm, I DO live in a detached house" I blurted out. The teacher spun around surprised.

"Sorry?" He said, had he been talking and not listening (sadly my sense of wit wasn't that developed so young - drats)??

"I do live in a detached house" I said confidently.

"No, you live in a semi detached house" he said in a huh-huh-huh, 'too cool for school' manner.

"No, I *don't*, my house is detached". By this stage everyone in the class was watching us, their heads bouncing from left to right, like spectators at a tennis match.

"Where do you live?" he asked me.

"__insert rough name of address__" I wasn't going to give this nutter my full address.

"Then you live in a semi detached house" he said, nodding his head, yet less confident then the first time. How did this chip know what my house looked like. Did he have a map in his head that told him what every house in the country looked like on every single road? WRONG.

"I. LIVE. IN. A. DE---TACH---ED. HOUSE-UH!!...I think I'd know! " I said in an exasperated voice. I mean, it's true, I would know!

He stared at me for a few silent seconds, mouth open like a perfect golf hole; the whole class were sitting tentatively wondering what he was going to say (even I wondered what he was going to do); He then did, what so many people in my life have done since, he just said, in a straight, firm, but conversation ending voice "OK..." and he slowly backed away. Oh yikes, I'd scared him!

After a few more moments, he cleared his throat, and carried on with the class. Just like that.

I must add, I was always a very polite student in school, but hated it when people spoke to me like I was a child. Ok I was eight, so technically still a child, and normally eight year old little girls, with immaculate appearances aren't supposed to "talk back" but he called me wrong and I was right. WRONG, WRONG, WRONG. Oh how he'd have loved to suffocate me with an immuno-suppressant or ten!

So now that I'm preserving my voice, this leaves me little opportunity to scare off any more educators: the ones in college haven't clocked me yet, the mask has yet to slip, muahahaha!

Saturday, September 29, 2007

The end and the start...

I finished work today! The day was spent showing the new 'Ro' (seriously) how to work the shop and till and customers. The pharmacist over heard me saying "'Oh just say, gosh isn't the weather ______ out there', that'll get [the customers] gabbing and you just have to stand there", and to think she thought I was actually genuine in my concern for the weather these past nine months! Nah, in fairness though, the majority of the customers are all very sweet the majority of the time.

So after nine months, I have my Saturdays back :) It was great experience for me, as I'd never a) worked before or b) worked in retail before and I gathered a huge amount of experience while there.

So while it's the end, it's not really the end, but rather just the beginning. A lot of my college friends work a few hours a week, but at the moment it's just not for me; I have the rest of my life to pretend to work and at present I want to concentrate on buying friends working on buying a social life college stuff.

My second belly button is acting up at the moment ( I seriously must, MUST post photos of that soon) so I'm going to go get sellotape and fix it. Or maybe put a straw in it and blow and make my tummy go big. Hmmmm.

Friday, September 28, 2007

Drama is...

...Last night. It was our Fresher's Ball, in our (Eileen et al)usual hang out of CrawDaddys. I left to go in at about 10.30pm, but there was nobody to give me a lift to the LUAS. Helllo!! Considering I tired and rather lazy feeling, plus rather dressed up, I didn't feel like walking so I had to drive myself to the stop, park my car, and pick it up this morning. I went to one LUAS stop only to see another parked car with broken glass beside it. *Dodge* Em, no thanks! As much as I like driving with my windows down, and it takes a bit of time to press the 'down' button, and then the 'up' button, I think I'll keep my windows in place, in case it rains or something.

So I sped off, breaking all speed limits (well I *had* had a bit of wine before hand - why people should be available to give me lifts) to the next LUAS stop, one where I would have to PAY. Successfully parked, I went in to pay, only to discover the machine didn't recognise my bay number because it began with a '0'. HELLLO! So back out to the car (all this in clackity stilettos I might add) and drove up on to another level, knocking the car off a few pillars/cars here and there as I went (hence the really needing lifts, people). Oh and I figured if your car alarms when you don't have your belt on (like mine does, like ALL the time) just press down the buckly plug thing and it shuts it up. Successfully parked (again), I ran/clacked my way in to pay, muttering "Gonna be late...damn bay, stupid freaking car park, arggggggggg" only to discover the machine didn't take notes!!! HELLLLO!!

I looked for a shop, a change machine, or spare change to help me. I think someone may have heard my frustrated screams, and my clacking as I stamped impatiently on the spot, as a man came around the corner. I approached him and asked if he knew of somewhere I could break my note. Turns out he was security. He very kindly then gave me some money to pay for my parking - how nice is that?! I think he was scared of me..and that was more of a bribe then anything else.

Anyway, got in, ID worked (despite old blond haired photo), I danced, I mingled, I talked, I had a jolly old time, I ate and came home. I arrived in at about 4am and my friend rang me, and then my nose randomly and spontaneously bled so I was like 'Oh no, my nose is bleeding, I better go' and then I hung up and then I went to bed and slept for like four hours and then I had to get up and go and get my parked car.

Nobody hopped at the chance of offering me a lift to the LUAS to pick up my car, so I had to walk. Imagine. Luckily nobody saw my little hop, skip, trip though. Anyway, that was drama for you.

How time has flown since I posted this post here (I refer to the last paragraph in it). Yahooooo! Back to washing my hair regularly so...

In hindsight: I reallly hope nobody looks at those security videos....

Thursday, September 27, 2007

I love it when...

..issues just resolve themselves! Ahem hem splutter hem.

I still have to think of three items to describe who I am. And I'm going out tonight, so it's either going to be a very scribble nonsensical job if I draw when I come home, or a very scribble nonsensical RUSHED job if I do it before class tomorrow.

Irish people generally have a thing about saying positive things about themselves, for fear of sounding egotistical. That last sentence even seems like I'm blowing my own trumpet, which I'm not - it's just our nature, and I rather like it that way anyway. So having to describe yourself three times in a positive light is in fact a difficult enough task. Could you do that? Well, could you, couldyou couldyou?!! OK, well then do it for me!

Anyway, since 'talking a lot' isn't a description (needs to be like: I'm caring, hardworking, dedicated...all made up stuff like that) it don't cut it. I think I'll paint my page black and shout at the teacher that SHE'S the psychologist and so SHE can figure it out. Confusion: that's my secret to getting through these next four years.

Ignore the day posting mix up. Last I checked it's still Thursday.

I hate it when...

...People steal from me, it makes me feel all empty inside. And the feeling of being robbed combined with a total lack of memory makes me feel the thief and at myself.

I specifically remember *someone* saying "here it is back, I'm putting [the thing] it here ok?", but now I don't remember who that who was! And the 'thing' isn't there.

It only cost me €7 and it can be replaced, but that's hardly the point. Booooo.

Wednesday, September 26, 2007

I need...

New clothes, new stationary, money for petrol, petrol, to grow an immune system that specifically guards against cold weather and sleep. Lots and lots of slee-zzzzzzzzzzzzz.

Tuesday, September 25, 2007

I learned...

...That my maths skills are non existant. I can count and add and subtract and divide and multiply - all the important parts - in my head exceedingly quickly but apart from that... I know nout.

We did aptitude tests in fourth year in school, and the results came out in percentile style (luckily my skills extend to this at least) and it showed that I was very 'numerical' but not highly mathematical.... I think that means all what I said above ( I can add fast) but that I can't solve problems involving John and Ann and filling baths with one tap in 30minutes, and having birthdays twice the age of the other...

Anyway statistics is a big part of psychology and I need to find a way to do them. And work them out. And do stuff with them.

In the meantime I will leave you with the cream of the crop of serious television ads on TV at the moment. This has been reenacted on more buses then I can count.

Sunday, September 23, 2007

Happy Birthday to...

...One of my clan, my quarter of a century old brother. The brother who once poured orange juice on his cornflakes and the brother whose stomach i once jumped on with two feet because his tummy looked so flat and bouncy.

Apart from having his appendix out some years later, probably unrelated anyway, it didn't do him any damage. Happy Birthday!

Saturday, September 22, 2007

Someone's looking over me...

I began working my Saturday job back in January. There's a sweet and friendly little café next door where I purchase my lunch every single week. And not only that, but being a creature of habit, I order the exact same thing, every single week. Without fail!! So much so, that if you go in and request a 'Rosie', you will get served the panini I order: a garlic chicken panini with mayo and lettuce.

This morning, I jumped out of bed with a fright, fearing I had overslept, but to my relief it was only 8am. This gave me the luxury of having an extra half an hour in my cosy bed. But, fear became reality when I fell back asleep and really did over sleep. I was awoken again at 8.53 (due in at work at approximately 9am), making me do an Olympic sized high jump out of the bed, and a marathon sprint around the house collecting the true necessities.

I couldn't find my money though, which I had removed from my purse the day before. I shouted to my Mom to drop some up to me later in the day so I could order lunch. And then I set off.

Later in the day, as NOT requested, my Mom turned up with a microwavable Sweet and Sour chicken dish. I ate this with reluctance, frustrated that I couldn't have my 'Rosie' to eat.

Shortly after lunch, a girl came in, saying she had just been really sick and needed something. Aghast, I asked what had brought it on; had she had anything funny to eat etc. She told me she had, that her and her friend (also now getting sick) had just had lunch next door a short time earlier. What did they eat? A Garlic Chicken Panini thing. We all agreed it sounded like an unfortunate case of food poisoning.

The one day, of all the days, that I didn't have my usual. I can't imagine how ill that could have made me, on top of this background chest infection, throat infection, irritated sinuses that I still have. A freak stroke of sheer luck, or someone, somewhere was looking out for me...

Friday, September 21, 2007

My first official week of lectures is over, and already I can tell I'm going to thoroughly enjoy everything college life has to offer. I've met a few of my former year (who are now in third year) which was lovely, and yet scary too!

Someone asked me about if and how I told people about my list of conversation starters ( Cystic Fibrosis, Diabetes, Transplant!!) and the answer is I did. I deliberated about how I would say it to people, as compared to 2 years ago, there isn't anything visibly different about me (except for the OmiGod you're 20?!). I decided to say nothing initially, as although I figured people would know eventually I didn't want them to see "Transplant" or "CF" before they saw me. People tend to react in different ways when one mentions the little fact of a transplant; some offer to carry books, get a chair, do things for you, which although well intentioned is really rather unnecessary. So at first I told nobody.

Until that is, an hour into registration I happened to sit down beside a girl who was exempt from paying registration fees as she had taken a medical deferral. I had already forked out for my fees and wondered whether I had needed to (turns out I didn't), so we chatted and then she basically asked me why I had left two years previously.

"'s kind of complicated...I sort of got sick (duh! Medical deferral...real smooth!) and....well...kind of needed a transplant, which I then got AndNowImAllBetterAgain!" I said.

She was cool about it. It felt good that I'd told one person anyway. Or that I'd told one person one aspect.

Then the whole diabetes thing was easy as I just took out a needle pen and injected myself in front of people, who to my frustration and dismay paid absolutely NO attention whatsoever! Hello!! ASK ME PEOPLE!! Anyway, as it turned out someone else in the group was diabetic too. We now share needles.

And then after telling most everyone about the two (transplant, diabetest) the last bit, the whole CF bit, was like the bow on a tidy little package. It was the explanation for it all. A solution to a complicated equation. You get the idea...

What I found though, is generally most people come into college with something to tell. Not all people, but I wasn't the only person. Some things to some people seem trivial, to others seem huge. And overall, people are so accepting anyway, or else apathetic. I'm not sure...

So for my first assignment we have to draw things that represent who we are. I'm very tempted to put a donor card on the bottom of my sheet, as it is the reason I'm here. But while that matters, does it need to be said? Do I need to draw attention to myself in such a way, will I become known as the 'transplant girl' or will it be that 'wow, I should really go get a donor card'. I guess it comes down to the fact that it's all about me, and I should just focus on that...

Thursday, September 20, 2007

A letter that was sent yesterday, of which I have heard no response. What I do when people and places annoy me:

Dear Sir/Madam,

Today I was purchasing alcohol in your Bloomfields' Tesco in Dunlaoirghe and was asked to produce photo identification. I showed them my driving license and offered to show staff my credit card, two student cards, bank card, travel card and passport as proof of identification, but to no avail. It seems that I had to show a Garda Age Card.

I was approached by a very rude security guard who interrupted me as I calmly tried to show him the seven variations of ID I had on me, all of which were refused. Not only that, but he obviously felt it necessary to gather round two more security guards and watch me as I had to ring a friend to come down and do my shopping for me. The way they felt they had to glance inside our shopping bags as we packed them to investigate exactly what we had, made the security in Dublin Airport feel as invasive as smile. Thankfully I am not that easily intimidated.

Is Tesco aware, I ask, of the
Intoxicating Liquor Act 2003, Section 15 ,which clearly states that an “age document” (a document containing a photograph of the person and information that enables the age of the person to be determined) can be any of the following: an age card (aka Garda ID), a passport, an identity card issued by a member state of the European Communities or a driver license?

The question is, by not selling alcohol to a person (me) that is over the age of 18 and has a legal document to prove so, are Tesco breaking the law?

I would kindly welcome a response to this, as age is something I do not like to be discriminated against. I am not at all offended that people may mistake my age, but to treat a loyal customer in such a rude way is simply not on, especially when it was obvious to everyone that I was not lying about who I was.

At the end of the day, the service I sought was not provided.


(My name!)

My younger sister did something similar about three years ago to Tescos and they gave her Tokens For Schools Vouchers. I think she was hoping for free food. (She wasn't complaining about not getting served though obviously). I think there is some genetic thing that runs in our family....CF (Complainers Frequently) I think it's called...

Wednesday, September 19, 2007

Today I finished my registration in college, as I had to register with the medical people in there.... for obvious reasons.

I met one nurse on Monday, who I had met before my transplant (when I started two years ago). We just updated the file, adding 'diabetes' and 'transplant' to the list of reasons they hate to insure me in that place bonuses I have acquired.

She suggested I register with the college doctor so I got an appointment for today. She talked to me, and then wrote in all the medications I was on (which were mostly all new ones since two years ago). We chatted about all sorts, well, mostly ME obviously! She then said how she felt I looked rather caught up (chesty). Not exactly what I wanted to hear! I explained that it was bucketing it outside and I had run from the carpark because due to parking I was running (quite literally) a bit late(!).

And the part that made it all worthwhile: Seems she (the doctor) worked as a PHLEBOTOMIST (that being a person who prods for blood) on work experience and it has 'stood to her'. AND she said she'd be allowed to take my bloods for clinic! I could feel all my little veins around my body, collapsed and non collapsed ones, come to the surface - I think they like her!

We then discussed needles, techniques, veins, ME, and I was on my way. I have a few phonecalls to make and hopefully we'll have a plan of action before my next clinic visit!

Considering I'm down (well, sort of, not quite *down* but aware of) with a sore throat at the moment, I'm sure getting the bloods out of the way will mean I'm only sitting in clinic for 7-8 hours!

... Or 8-9 hourse if I have to tidy up after certain people at the breakfast table, thus delaying me...not mentioning names...but the FRUIT & FIBRE doesn't have LEGS you know!!!

Tuesday, September 18, 2007

The Dog...

Jac: Yes I believe my Mum bought that dog for me when I had my transplant. I'm pretty sure I got it for my transplant anyway, because of all the teddys I own (much of which were put into storage after my transplant) I wouldn't think she'd pick that one! Either way, it's from Freeman's (or The Freeman...whichever you call it).

The reason:

I got called for my transplant on a Saturday. Four days before this, on the Tuesday, my 12ish year old dog popped her clogs. Her death was planned for Wednesday actually, but she had had enough by Tuesday. My dog was a hoover for food. All through her life she would steal from us, from the table, from other dogs, she would pick up stray food on her walk.

Anyway she began having strokes and gradually lost the strength in her back legs, causing her to slip and slide. On her final day, she couldn't walk at all. Something had happened and we knew the end was in sight. The final confirmation of this was when we gave her a biscuit to eat but she refused.

So off she went and the loss of our precious family pet was terrible. We still had another dog, but she (at the time) was our favourite.

This was her (the bow was for photo purposes only...really only resting on her head):

So after the transplant, the first few days were pretty tough, not hard as such, but tough all the same. So my Mum came in one morning saying she had a present for me. I closed my eyes, squinting with anticipation and then she whipped her hands out from behind her back showing me the little teddy, her face gleaming with delight, waiting for me to say sometihng.

I took it slowly, rolled it over in my hands, anger building up in me, and I threw it across the room.

What is this?!" I exclaimed

"It''s a new dog" she answered

"A *new* dog?!" I said, aghast, "I don't want a *new* dog, I want CHAMP..Suki! You can't replace a best friend, that's what me and Champ Suki were. She's only gone less then a week, how can you do this to me?"

With that, I reached out and flung the *new* dog across the room, watched as it bounced off the window and collapsed to the floor. My Mum, teary eyed, pleaded with me to see sense, going over to rescue the poor teddy. In a calm, but piercing voice, I said "No. Leave it.".

Skip a few minutes...and all was right with the world again.

Anyway, some details of that story may be slightly off, but the general jist of one or two words is about spot on! For anyone who cares, the dog and I got along very well, and now she/he sits on my bookshelf.

Sunday, September 16, 2007

Puffy Work!

Yesterday I worked. It was as busy as usual, meaning we had hardly anyone in. Except those thieves who robbed us!! I have to go in on Monday and report that.

While working, my calves and ankles began to swell, indicating I was retaining fluid. I tried putting them up but to no avail, they were massive! This went on all day.

Later that night, I began to feel tired and fed up, kind of a 'non feeling', or 'wan' as I like to say. Worst of all, I felt exhausted and had no appetite. My Mum rang the hospital for me (because I begged her to - me not wanting to answer a million questions!). They asked all sorts of questions, logged my call. They said by sounds of things, the fluid hadn't moved to my lungs (which is obviously good news!) and told us to ring this morning.

At 8.30pm I went to bed. I got up to take my 10pm medications and went back to sleep. This morning I got up at 10am, and suffice is to say, I feel fine again. And my ankles are normal again!

My big foot when I had my transplant in Newcastle. This happens everyone in the few days following transplants. But, it's not supposed to happen after that!! ....Don't ask about the dog...

Friday, September 14, 2007

Busy bee...

Apologies. I started college (uni) on Wednesday and have found the whole thing very alien to me. As in, I'm not used to having to be active for more then an hour at a time so as a result, I've been rather pooped. Anyway, college is good fun, the year is considerably smaller this year then the first time I was there, but the people are all lovely. Being the quiet and timid wallflower that I am, I stayed in the corner and sourced out potential enemies. I joke. Really, I do.

I fear that my chest infection is rearing its ugly little infected head again so I'm working hard to get that under control, otherwise I will be back to counting down days on IVs again, and we all know we don't want to resort to that.

So I thought I would post pictures, mostly of my arms for you to go 'ooooh' and 'awwww' at. A lazy, cop out photo marathon blog if you will!!

Day one: "The Glory Days"...That's my gravity drip in the hospital. I didn't get the luxury of a stand when I got home, but was demoted to using coat hangers.

Day one, Dose one: That's my beautiful arm, working harmoniously with my precious antibiotics.... what a turncoat that vein turned out to be!

Day... something or other: Something wasn't quite looking right... tantrum swelling beginning to show!

Eeeeek, no, something definitely wrong! I might add at this point, my Dad remarked "Well... there's nothing reallly wrong...As long as it's going in, that's the main thing!" WRONG WRONG WRONG and WRONG!!

The aftermath! And my dog's behind - he wanted no part in having his photo taken.

And this was me forcing my dog to have his photo taken. I don't think he was keen on the camera flash! Not revenge at all....

Wednesday, September 12, 2007


Have I been spelling 'Canulas' incorrectly this entire past week?! Is it supposed to be 'Cannulas'?? Those of you who know my freak obsession with proper spelling, cover your heads as I throw vases and other valuable, smashable air looms at your heads.

YOU SHOULD HAVE TOLD ME!....I feel so ashamed.

Tuesday, September 11, 2007


This entry, was written on Friday night, and was supposed to have been posted on Saturday. But I didn't post it. Here it is.

From Saturday: This entry was ready to be published before today's unexpectedly positive turn out. I just thought I'd point that out.

I feel in a way it's necessary to write this entry tonight, as so much of recent entries has been slightly down hearted and lacking 'bounce' somewhat. Basically, they've been a marathon moan. I fully realise that there are so many people who would give their right arm to be in the position I find myself in right now (heck I've already given away two arms to experimental butchers!).

I think when the prospect of a third, possibly doomed Canula line looms, this realisation is important to focus on. In fact it's not so much of a realisation - I certainly didn't realise it suddenly this evening - but more of a reminder. The short term frustration experienced with these stupid lines and veins, as well as the physical pain felt is really nothing in comparison to the problems and frustrations of some.

I'm counting down the days until I'm finished with this treatment. There are so many people who would love to have such certainty with their health, to have the luxury of having a count down until their treatment, pain or suffering is behind them. Even if this means some mild stress (which in the whole scheme of things, it really is) a mere three times a day, I am more then willing to sit here, lie here, or indeed rain dance here because I know just that: it is mild and mere. Of that I am sure - memory serves the most powerful reminder.

As I said at the very start of this entry, there are so many, too many people, who would give so much to be in my position. There are those waiting for transplants, those who are told they will never be allowed to have transplants. There are those with Cancer whose treatment requires a canula just to *begin* it. There are those who are facing death with zero hope, who don't have the choice of a canula to magically fix all. There is a growing number of people who daily join the club of people who have sadly, tragically and unnecessarily lost loved ones and who themselves would sit and take line after line after line if it would grant them just one more moment with their precious ones.

I hate, hate, hate Canulas and lines. It's probably the only thing I am certifiably phobic of. Of all the things I've done and had in my life it ranks up there as one of the all time yuckiest. This blog is written by me, and unashamedly (for the most part!) All About Me. I am however conscious that my readers arrived here from a variety of places, for a variety reasons, and have themselves a variety of health issues in their suitcases. And so I apologise for moaning. Some of you may tell me that I'm entitled to moan now and again, and that may be so, but in this case I really, really don't.

If there are a few of you left who have not yet said 'Oh when will she ever shut up moaning about IVs, she's lucky enough to have had her transplant!' then I're crazy. Life is precious, each breath is a treasured gift. And if getting stung by needles, means I get the successful treatment to keep enjoying this gift then so be it.

*That was a rambled spaghetti of waffle. It isn't even complete ('where is the conclusion' my biology teacher I'm sure would inquire!), but I hope that you can get the point I'm trying to make*

Well *this* has never happened before. I said yesterday I shall stop counting down to the end of my IV treatment. And a promise is a promise - We have decided to abort the IVs. ABORT MISSION IVs!! Ha!

My veins have, quite simply, had enough of playing ball (or attempting to). They've had enough of the IVs, the doctors have had enough of the veins, and I've had enough of doctors, veins and IVs. ....So we're not finishing the course out. Hey, 12 doses is better then no doses.

AND I was the last out of the clinic (that's including the staff members), a clinic I wasn't even attending! Still, I got a year's worth of sympathetic smiles.

I will post the 'mature' blog later. As I really, really feel it's important to be read. (Is that grammatically correct, "to be read"..?)

Monday, September 10, 2007

Hands up. Who did it. I know someone said something, or remarked in some way, or just generally let slip a word of praise for my little Freddie. And when I find out who did, I shall chase you down the road like a crazed maniac aiming a big fat needle at your head.

It's gone. Ka-booom. No more. So I'm finished counting down doses. Good day!... I mean I still have eight doses to count down, but I'm not going to. When I arrive home from clinic tomorrow morning, new Canula hopefully in place I shall not make any mention to it.

Tonight I went babysitting. It was fine. I just sat on my behind, watched their splendidly large televsion, munching their food, keeping the door shut telling the children to be quiet while they ran around with scissors, skipped down the stairs holding knitting needles and then played with matches. It's a hard life. Especially when the six year old calls you bossy! Me?!?

BY THE BY: This was not the 'mature post that I feel is important to read' that I said would come today. I hadn't banked on Freddy going *pop*.

Sunday, September 09, 2007

SHHHHHhhhhhhhhhhhhhhhhhhhhhhhhhhhh10 doses down: 10 to goSHHHHHHhhhhhhhhhhhhhhhhhhhhhhh...

That's all I'm saying on the matter, as I suspect this one has already popped her clogs and taken refuge outside the vein she's supposed to be plonked in.

Confused? When a Canula blows or tissues, it means the vein has collapsed. The canula is a teeny little line that has been put into the vein in order to run the fluid antibiotics in. So if the vein collapses, it closes down, leaving everything you put into the tube to seep into the surrounding body, causing a burning stinging pain and possible swelling. All entirely pleasant. NOT.

With Canula #1, this happened after four doses, so that I couldn't even push anything in using the syringe because it would not go. And if I really pressed hard, my arm was about to go on fire. Charming.

At the moment, with Canula #2, it feels sore and slightly swollen. But this could be just because it doesn't like the trauma of having things put into it. It still flows very nicely (shhhhhh!), but I put a cold glass against my arm whenever I'm syringing anything in. It's a home cooked idea, working on the hypothesis that if I confuse my senses, it will feel the cold more then the pain. And by George it works!

Still confused? Well it's late and I'm a druggie at the moment.

Interestingly enough, when I was younger, we used to call Canulas "Freddies" (you'd have to 'give Freddie a drink', how clever). Needless to say, I hated the name Freddie for this reason. Anyway, I feel I am too old to refer to my line as 'Freddie' anymore.

I'm trying to think of the WORST POSSIBLE NAME, EVER to label this one. It's bound to offend somebody but what can you do? Ideas on a postcard!

So far, I have Cornelius or Celeste.

A more mature blog entry will come tomorrow, I wrote it on Friday night and feel it is important post for all to read.

Saturday, September 08, 2007

6 doses down: 14 to go.

This morning I woke up at 7am! With it being a Saturday morning, the whole house was still in a slumber, with only myself, my Mum and my dog making noise. It was eerily peaceful. I rang the hospital transplant unit and spoke to a staff nurse, explained my situation and asked if it was ok for me to come over and get a doctor to place another line. She said it was fine and to come over as early after 9am as I could as that way I'd have a chance of catching the doctors. Check.

At the weekends, the clinic is shut so you need to ring for access (the unit is off the clinic). A Philippine nurse greeted me and brought me down the ward. She told me they'd been expecting me. I waited half way down the corridor while she went and spoke to her nurse colleague.

"It's the veins..."

"Oh yes, yes. Oh that's her? Will I get the basin?''

Then the two glanced at me, saw I was looking at them and then both, identically smiled sympathetically at me. It would appear the team have been informed of my lack of veins. Ooops. One nurse then went and got some tea for us while another got the basin ready. I was to bathe my hands and arms in hot water to bring up the veins.

On two separate occasions two different people said to me 'So you're the one with no veins' and "I hear you have pretty bad veins". Was this published in the newsletter one wonders?!

Anyway, nice doctor did *amazingly* well, found an unknown vein and struck gold. He made the comment that I had very sensible veins. I take this to mean that if a loony pounced on me on a dark night and stabbed me a million times, there would be little chance of me bleeding to death.

We had a slight accident when the line thing broke and blood spewed everywhere. I didn't know I even had so much blood, it never seems to come out on clinic days...

Well fingers crossed!

Friday, September 07, 2007

4 doses down: 16 to go.

...And the line has gone. It had enough, it heard us all praising its splendid behaviour and cried "No more!".

Every dose has had its share of theatrical dramatics courtesy of yours truly, and every dose has brought symptoms of line death - stings, aches, swolleness to a small degree and the inability to push water through.

For a start, we can never seem to get the gravity drip mechanism right. It will either start off brilliantly and then cease going in altogether, or else it takes ages to get it going and then realises what it should be doing and acts accordingly. Thankfully the arrival of Baxter's ready made stuff will put an end to this.

A lot of it is positional, meaning that if I wave my arm around it eventually finds its groove and goes in. So much so though, that I ended up lying on my bedroom floor, arm up in the air with the drip dangling from a coat hanger hanging off my lamp. How 21st century. It's a pity this was 7.30am this morning, when one was in no mood to be having an impromptu yoga class.

Anyhoo, for me it's off to the hospital tomorrow morning in search of a lady doctor to insert new line. Hopefully the new one will not require an Indian rain dance in order to function. (The line that is...not the doctor...)

Thursday, September 06, 2007

1 and a half doses down: 18 and a half to go.
2 doses down: 18 to go (one went rather unexpectedly quickly in there...)

Having barely slept a wink last night due to Canula-insertion induced stress, I then slept in somewhat. As it turned out it made little difference as I was only going to be able to fit in two doses today anyway (clinic doesn't open its doors at 6am, and I don't know the meaning of that time yet).

Burpy Mc Belch-Burp, the friendly taxi driver brought me from town to the hospital. I thought (and my friends will probably agree) that I burped badly, but I think this guy needed some sort of...Gaviscon or Rennies or something. He was nice though and I read his paper while *blehhh* he *blehhhhh* drove *bleh-blehhh*.

A very nice Northern lady doctor came down with the dubious honour of inserting my canula. I picked out the vein (from memory it was a good one, plus I could feel it which is a positive sign). The lady got it in first go, which is unsurprising as ladies tend to be better at doing them anyway.

I had my first dose which, following a bit of playing around with, took about an hour. I'm so unbelievably terrified of jinxing myself, so I refuse to gloat, boast, or worst of all, praise my baby vein on its great behaviour.

My transplant nurse then rang Baxter(s?) and they have arranged the pre-prepared pods which will be ready tomorrow. For anyone who doesn't understand medic-ee speaky, you need to find yourself a chronic illness. BUT until then, basically at the moment, the preparation of ivs involves using three syringes, with needles, sucking up stuff, spraying it into bottles, shaking bottles, using more syringes and then making the now prepared potion run through a piece of tubing.

Baxter(s?) will just do all that for me, yay! Baxters sure know how to please their lazy customers!

Plus after this evening's dramas trying to do everything (with my Mum trying not to help at my insistence, bless her) I welcome any help. My mum for years was my nurse, whereas now I'm the one who does everything. Except because of the location of the line I can't physically reach it so she still helps. (NOT complaining about very well behaved line) It took us an age to figure out how to do it all (pesky thing wouldn't work) to the point where we were both browned off. She then came into my room and purposely stood on lots of my stuff, humming and hawing. I didn't say anything because that was an invitation for 'maybe you should tidy your room' speech.

Yes I'm really twenty. Hard to believe isn't it. And before anyone asks, I can't afford to move out.

Anyway, nurse Momma is going to help me, and fingers and veins crossed this thing behaves itself. *cross, cross, cross*

PS: "Tish", how nice to hear from you. Are you still working for that secret place that insists you pretend you're an import fish company when anyone rings you? Or did you escape in the middle of the night under cloak and veil??

Wednesday, September 05, 2007

Photographs don't really do it justice. If I can edit them on Thursday I will!:

Dear Doctor Jabs,

Thank you ever so much for having fun with my arm on Tuesday. You did such a fabulous job with it. And although *I* appreciate the time it took you to create such a monstrosity masterpiece I don't think everyone will share my enthusiasm. Didn't your mother ever tell you not to play with needles or to throw them into other people? Can I suggest that you don't ever go into a line of work where you have to have physical contact with any other living thing people or where somebody would place their trust in you? I guess the kind of careers we're ruling out here would be...oh I don't know...being a DOCTOR*. I hear there are plenty of butchers looking for apprentices with great enthusiasm. Shall I pass on your CV?

Unfortunately though, I shall be sending you the bill for the new jumper I had to buy yesterday. You see, all my other jumper's sleeves were to narrow to accommodate this new, bigger swollen more packed arm. But don't worry, I'll pay for the ice.

Actually I lie, it's not so bad. I didn't get a tan this year (sunbathing's a no-no post transplant) so to go around showing people my new colour on my arm is a conversation starter great. And not everybody gets to have a blue arm!!

Again, thank you.

I'm going off early tomorrow to the hospital, armed with tips and hints to give to the team for the placing of my vein line (known as Venflon or Canula or my favourite, Freddy!). One great bonus of having ivs is getting the day off work on Saturday. Wish me luck!!

*May be a little bit harsh. People make mistakes. But bleh.

Tuesday, September 04, 2007

Eeeeeeeeeeeeeee! Where to begin?

This morning I went off to the Mater for bloods and review. I'll post the waffle version in the medbook-redbook later, but a brief synopsis is as follows:

We got a *bit* of blood after four attempts, which resulted in a blue and rather swollen arm. My lung functions are down a little bit to 2.84L or 90%. Which considering I have a chest infection, is actually not too bad. My weight is fine, but I told them about my lack of energy. My consultant has made the decision to put me on 7 days IV antibiotics (like a drip). I think he's made the right call here, as at least we know they will work. Usually one would have to go into hospital for this, but because I live in Dublin and I'm so cool and all the jazz, the plan is to do it at home. The only slight problem with the whole thing is that I have no veins. NONE. So it would be a crying miracle if the cannula (drip) managed to stay in my arm for seven days.

Because my arms are all messed up today, we're starting on Thursday instead. I've had a whole year free of problems, and the week I am due to start college, I go on IVs. Typical.

But, it's all good. I've made it a year with no problems at all, and this minor blip will be fixed by the end of next week. I'm a bit like a deflated space hopper at the moment, and these antibiotics will give me a nice boost which will make for a nice bounce.

I guess this also means I still *have* to go to the next two Ireland games with my brother. Shucks.

Monday, September 03, 2007

BFG: The posting time of Saturday's blog (which mentioned the "911" attacks) was a freak coincidence. Couldn't have planned if I tried!...Oh wait, I could...but I didn't.

Now, here is the blog about EILEEN. As many of you know, EILEEN went off to San Diego at the beginning of the summer, tried to carve out a successful summer career in a restaurant, failed because the restaurant shut down three weeks in, and basically bummed around for the rest of the summer.

Well now, EILEEN has returned, and after much time spent avoiding me, ignoring my calls, texts, emails, bangings on her bedroom window every morning, noon and night, EILEEN felt it best for her safety she met up with me. In a public and crowded place of course. I then coaxed her into my car and went speeding up and down the quiet roads. She bored me to tears with her stories, so much so I tried to push her out of the car. Unsuccessfully. Pesky seat belt.

She's trying to make out that she's all popular now and that she has to spend time with another friend tomorrow. She made out that she was talking to said friend on the phone, but the place got really quiet, and I am certain I heard "....At the beep, the time will be..." on the other end. Weird.*

Anyway, it's good to have EILEEN back. She's a goodun. But not a very nice goodun. She was getting a taxi to the airport, when they spotted a car-crash scene with another taxi. Her taxi driver said "Is it ok if I get out and help my friend", and get this, EILEEN said NO! And not only did she say NO, she launched into a shpeel about why he wasn't allowed to stop. Classic! Apparently he was very grumpy after that.

*First two paragraphs may be exaggerated. Taxi one is real.

Sunday, September 02, 2007

Later Post:

Today I went down to Kildare to the Shopping Outlets. I have a love-hate relationship with shopping, but upon seeing one particular shop, I ran in! And spent a bit too much money me thinks. Oh well.

Early Post:
For those of you who came to this blog looking for photos of Peg Tubes and Mickey Buttons, I will put one or two up for you this evening. After all, I did have one for 17 years. And now I have an open "hole" which when my stomach decides it doesn't want chocolate or Coke, it spits it out. Charming. For everyone else, random? I think so...

And a proper blog will also come later. In the meantime I need a nap.

Saturday, September 01, 2007

*Yawn* I worked today *Yawn*

I also developed puffy legs and ankles, which is a bit of a puzzling sign. I'm also wrecked which is another puzzling sign. It's Saturday, 9.30pm, I'm going to ring the Mater transplant ward, tell them that I have poofed up legs, and then I will go to sleep. Puzzling indeed.

EDIT: I lied/changed my mind. I didn't ring the ward, I got back out of bed having spent the evening in. I went downstairs and watched a documentry on the World Trade Centre attacks. Well I did want something to cheer me up after all. But jokes aside, it was an amazingly powerful documentry, filmed by two French brothers who were documenting life at a fire station in New York, and in particular, a "rookie" fireman. It was just unbelivable.

Where does six years go?