Showing posts with label chronic rejection. Show all posts
Showing posts with label chronic rejection. Show all posts
Friday, 28 March 2014
Why become an organ donor?
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Friday, 20 September 2013
You only get what you bloody give out
A gift comes in many shapes , sizes and gestures.
The gift of your time can make the best memories,
the gift of kindness brings a smile,
the gift of friendship gives us laughter
the gift of your thoughts brings meaning and understanding,
the gift of empathy brings you closer,
The gift of great minds have changed the world
the gift of great speakers has given us inspiration
the gift of great artists can bring tears
the gift of great artists can bring tears
the smallest gesture can make someone's day, week, month or ingrain in that persons being.
Gifts needn't be commercial,
gifts needn't cost a thing.
gifts needn't cost a thing.
The greatest gift you can give and we so often do is your heart, pure and true; it can be given as often or as little as you wish.
To give can give you the greatest gift back.
It can cure sadness
It can cure loneliness
It can cure heartbreak
Gifts are given every single day, with no monetary value because most are priceless.
Give freely, give wisely , and to you reader my final gift, this piece, to make you think, to make you stop , to make you realise life is so much more than costly goods.
As that great band once sang "You only get what you give"
but should you wish to send me some gifts of the monetary sort I'll happily accept x
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Monday, 5 August 2013
You know what ? Life isn't fair
“I have cystic Fibrosis”
“Oh I’m really sorry about that”
“ Oh don’t be, you didn’t make it”
I’m not gonna lie, sometimes I use CF for sympathy –usually
with dougie when he wants me to go a big walk, or cycle or em make tea or ha ha
ha he never buys it.
Here is how I like to see it . . .
I was in a great job, I was in a great place in my life, I
have wonderful folk around me, but I have left it all given in my notice etc to
come on this trip – Big wows 3 months that’s not long I hear you say. . . .
Well actually I don’t look for change too often, I like the
way things are, but I also have been given a very double edged gift from birth.
The gift being - I
always knew time was precious, I never left argument’s un solved, I forgive easily and though folk say never
forget those who do you wrong – I do. The way I see it, I don’t have time for
stupidity, stupidity being catty fights, stupidity being worried about the
small things, stupidity being not grabbing life by the horns and doing the best
bull dancing you can do.
Don’t get me wrong, sometimes I do divulge in stupidity, but
I’m often reminded by something that I don’t have the time.
None of us truly have the time . . .. . . but I am fortunate
that I am aware of my time, I don’t know when it will run out, or when it will
become very obvious that the things I want to do are being taken away from me
slowly or quickly ,but I am aware that this TIME isn’t infinite.
At the moment I have a couple of people within my life that
are going through hell, no need to name names, but if ever there was a truer
word spoken it would be Kate Bush’s “Running up that hill”, knowing only too
well what end stage lungs are giving up the fucking ghost is like I wish I was
able to give them some rest bite, to share in their struggle, to hold them up
for a while and give them the opportunity to walk without thinking about every
single bloody breath.
I never felt too much guilt after tx and I don’t know if that’s
a good thing or a bad thing? I felt guilt when Nicola died but now I am feeling a whole lot of guilt – a whole lot of why me’s? A whole lot of what the fuck is
happening.
I sometimes wish I had religion to fall into, to whole
heartedly believe that god has a plan for the people I care so much about, but
I don’t. I’m spiritual, I believe we are not finished when we pass from this
body but I don’t have any belief after that.
I struggle to believe in a higher power who would allow this
world to go to the pits, who would allow babies being born so ill, who would
allow people to suffer so incredibly badly.
I know a number of you will strongly disagree, there is a
GOD, he does this to teach us, to let us learn, to be better people. . . .
.whatever . . .
I’m just jealous that I can’t have those feelings, those definite
thoughts and beliefs.
Just after being listed for tx, when I think it truly sank
in the situation I was in, I awoke one night in Dougies bed and was completely inconsolable,
I sobbed my heart out for my family, for my friends and loved ones and more
importantly and selfishly for myself.
I want to be able to say something to reduce the anxiety,
the pain, the horrifying thoughts that dominate their minds, but I don’t have any words except I know how
it feels. And what can they words do?
This is a depressingly sad post but more often than not,
this is the life for CF, for lung disease and for dealing with an illness that
you know most probably will kill you.
Ah pish . . . . .who’s got a funny story to share???
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Friday, 2 August 2013
No man is an island
No man is an island –Hugh Grant about a boy, what a wise
actor he is J
Anyways todays topic is going solo but not down in alcapolco
– No,. . . . going solo is never something I have done.
Throughout my life I have been surrounded by good people,
funny people, sick people , kind people, loving people. Every single kind of
person and I give them the gift of knowing life can be tough and shit and they
are lucky they don’t have mine. No I’m kidding I have been surrounded by people
that have made my journey so far amazing., have supported me, have made me
laugh, have made me ever so thankful to be part of their lives.
I put on my facebook the other day something along the line
of, ‘it’s not always those you have known the longest who shine the brightest
in your life’. I have been so very fortunate within my life, I grew up with a strong,
loving, caring and dark humoured family.
I grew up with great, understanding, funny, caring, looked
out for me and above all funny friends. I plan to spend the next few days
giving insight into the amazing people around me.
I have been very lucky to have been in two long term
relationships in my life(growing up with
CF I never thought I would ever find someone who could love me with my flaws
and all – I know sounds a bit dramatic, but who wants to live with someone who
spend half their time doing medication and the other half coughing up “great
balls of fire” no I mean phlegm) – obviously the second far exceeds the first
but the first taught me a lot, let me know what to expect and I was accepted
into both families.
Growing up with CF I never had trouble with friends, I was
loud mouthed, I didn’t often stand back if others were bullied and I got myself
into a bit of havoc for that reason.
One of my oldest friends is a boy, he knows who he is, we
met at 9 and he took the primary three’s lives upside down with his information
on sex. . . . and ladies and gents and everything. I remember asking him to go
to the shops not long after he joined our school and from that day on we spent
a whole lot of time together .
We both grew up in what is often thought of as an affluent
area of Glasgow but we both had in common that neither of our families were minted.
We had a common love for food, mine sweets his cakes.
We spent days eating and making videos and generally sitting
around. His family were great to me, apart from his brother who once opened the
door to me looked at my outfit then closed the door in my face whilst stating
‘oh god’.
Yes indeed even back
then my dress sense was a little distorted and different it makes me laugh now
that I stood a further five minutes in the other side of the door before
knocking again.
His sister was and is still very beautiful and I learnt all
I knew about straightening my hair from her (using a clothes iron, well before
GHD’s arrived).
He was/is my best
friend, he got me a teddy every year for my bday, he made me feel incredibly
awkward after Sunday dinner at his by telling me I had to leave but I didn’t
want to, he was a compulsive liar and I still love the bones of him to this
very day.
He never failed in making me laugh and he helped set the bar
in what I would later look for in a partner –someone who would make me laugh.
He had a very dark sense of humour and I swear when you have
a terminal illness the one gift you can be given is the gift of a sense of
humour in the darkest side of life, if you cant laugh about death when you are
often facing it then you are what I like to call F_____.
He would never dream of offering me sympathy which I love
about him and he is also one of the few people who I truly truly look for for
honesty. Even though I don’t see him so often he still makes me smile. The
other year he sent me a black patch for clothes it stated “fuck you , you
fucking fuck” he said seeing as it was black I could wear it to my mac job, it
made me giggle a whole lot.
He is now following
his dreams, and I’m sure he will come up in many blogs but to this day he is
still one of the top three gentlemen in my life
. . . Mark Young I’s love you.
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Saturday, 27 July 2013
LONG LONG DRIVE > > > > > > >
Today we awoke early, Dougie was going for a surf lesson and
I was going to laze about in preparation for our long drive. We had planned on leaving at 6am but
no one had any surf lessons available yesterday so dougs had to go this
morning.
The long drive was from Caberton to Granada or a town
outside Granada that my dads other half ( best mate though really they are like
laurel and hardy) owns. The drive was long, I tried to do the first stint but
only lasted 10 miles, Dougs took over and 150 miles later we pulled over on a
picnic area in ESPANIA!!!!
It was HOT! I know that’s stupid to say, but driving in a
van with -he haw- air conditioning is MELTING YOUR FACE OFF HOT. I swear the dash board looked like it was sweating. Dexter
thankfully has realised that he can jump into the back and lie on our bed in the
shade. He spends most of his time there, which means I contort into
differing positions to try and sleep.
Todays position was described to me as a
bit like Rab C, Dougs said all he needed was a string vest and a Tennants can I
woulda made it look even prettier.
Anyways, I took over, singing along to my ipod, dougie
having to take the battering to his ears of BACKSTREET (always think of Kerry
from work when I hear them), Nsync (kellyann and I’s shared guilty pleasure
among others), Spice girls – I went on to tell Dougie how myself and my friends
Karen and Fiona had our set spice girls and we only sang our bits. Once Dougies
ears had thoroughly bled, I decided I needed and I mean NEEDED a burger.
Burger King at 9.30 and the drive onwards, 230 miles to go
and DOugie was taking first turn with a Mug full of hot strong coffee. I awoke
with only 60 miles left –what a sweetheart.
So we arrive here about 3.30am and it is glorious, simply
gorgeous, a FRIDGE!!! A WASHING MACHINE AND . . . . . . .drum roll please AIR
CONDITIONING to name a couple of splendid things. Right now Dougs is at the
door with the cooler so I am off to make him a cheese and onion toastie, for
all his efforts.
Travelling together in these heats and in the confines of a van isn't pain free, we get agitated and grumpy and usually one of us being so quickly makes the other, however we have gotten pretty great at sorting that out quickly . Which is good, or I may have thrown myself out of the speeding vehicle a few times already :)
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Sunday, 21 July 2013
I wish I wish
“I wish I was a
little bit taller, I wish I was a bawler
I wish I had a girl
if I did I would call her”#
There are a lot of
things I’ve done wrong in life, or should I say I haven’t done right. Life is
full of mistakes but the real lessons are learnt with mistakes.
I used to be a
dweller, if something went wrong, If I hadn’t made a wise decision , if my
actions had scuppered my plans I blamed myself, I would dwell on it, I would go
over and over it in my head. I used to be so bad at decisions I was like the
dice man and I would make decisions based on coin flips.
Maybe it was based on
the fact that I had to make decisions every single day of my life, that were
INDEED LIFE SAVING. If I decided not to take my meds I knew there was only one
way to go.
I type this because generally, nowadays I
don`t dwell, if I do something wrong I try and right it, if I hurt someone I
say sorry, I try and learn from my mistakes.
However, there is one
BIG, HUGE, GIGANTIC series of events that I will never not dwell over.
In November 2009 I received the second chance
of life. The hope, the wonder and the opportunity within those first few
days(even hooked up to a machine and tubes, and what not) was so overwhelmingly
amazing.
But then I would
think of my best friend, my best friend Nicola (who also had CF ) was battling a cyst within her lung which kept
being infected and every time they tried to treat it, it would fight back with
vengeance ,I worried about how she would react? Could she really be happy? Would
I be able to be truly happy if the shoe were on the other foot? Even though everyone
who knew Nicola would tell you what a wonderfully beautiful soul she had, I still
wasn’t sure how my chance would affect us.
I remember calling
Nicola from my hospital bed around day 4. I had been struggling so much about
what to say, how could I say how it felt? How could I word it so it wasn’t so
amazing sounding, so she didn’t feel like she was missing something wonderful
and magical?
My nerves were a bit crazy on account of the
drugs, the adrenalin, and the lack of sleep I had , Nicola had been my best
friend for over 3 years, she had been through everything with me, the usual
girly stuff; break up’s, fallouts with
friends , dating disaster stories, but she had also been through my lowest points,
she never judged, she never cast up feelings I had shared, she never got
inpatient with my incessant talking, she had been my rock and she was the more
fragile one of the two of us.
So I picked out her
name in my phone and called and as soon as I heard her wee voice I knew we were
ok, she said she hadn’t been sure how she would react, she worried she would be
jealous, or angry it wasn’t her time but the realisty had been happiness. She
was so happy her friend had been given a second chance.
We laughed at how
high my voice had become since all my old lung junk was away. She asked me how
it felt ? She was so happy for me, she was my best friend, she was my soul
mate.
From the November
onwards I couldn’t go and see Nicola, she wasn’t well, I wasn’t even allowed
out in public until 3 months after tx as my immune system was so dampened to
stop my body rejecting my lungs, but on the fourth month I wanted to see her so
much.
I know lots of people would say I was risking
this amazing gift I had been given and yes it’s true, but I also knew my friend
needed me, and I needed her just as much.
We never had really cuddled
and tried to limit touching (even sitting near each other) knowing that it
would risk cross infection even before tx. We used to blow kisses to each other
and I would often cuddle her mum and ask her to pass it on.
So . . . . .there
will be much more time for me to share all our stories but here is where my
biggest regret lies.
MY life flourished, I
was at College, I had final graded unit coursework due. I didn’t get to see
Nicola as much as I should have. In hind sight I think I was truly in denial .
. .
By the time the cyst
arrived we would later find out that it was too late for her to be assessed.
She wasn’t told this though and if she was she never shared it, looking back
now I remember us laughing at my fat steroid face and me telling her I would
have my revenge when she got her transplant.
My biggest regret in
life is not being there as often as I could have, is not seeing how gravely ill
my best friend was, is believing my heart when it told me that she was going to
be ok, and not listening to my head when I spent nights crying my eyes out,
sobbing as I didn’t know what was going to happen to my friend.
See she was stuck in
the hospital all the time, my hospital too, I would sneak up if I thought none
of our doctors would be around. One of my latter memories was Nicola and I
sitting until after 10pm(way after visiting hours) watching Cloudy with a
chance of meatballs because the main character reminded her of her twin brother.
I would get Dougie to
run up to the ward during the day with sweeties and I would get a wee thank you
message.
I had to giggle
writing this remembering that I went and bought an Edward Cullen cut out
(lifesize) with a heart helium balloon and took it up to her room. She loved
twilight and was a team Edward. She laughed through her oxygen as I told her
that although I couldn’t be there Edward would be watching.
She later confessed
she had to get him taken home as he kept scaring the nurses.
The week running up
to her birthday in May, I was so chocablock, I was completing my graded unit
work, I was trying to go to college and I had a 10k coming up. On the Sunday the
day of the 10k I got round the run and rushed home to get my house ready for a Disney
themed party for Nicolas birthday.
Pink pink pink,
sweeties, chocolate fountain, some new Disney DVD’s, and more sweets with
balloons and happy birthday banners.
We had an awesome
night . . . . pictures I will treasure, specially the one of me holding the
candle close to Nicola and her oxygen . . . . .FLAMMABLE MUCH???
That would turn out
to be my last moment with Nicola, as we wore our matching hello Kitty dressing
gowns (she got us them for Xmas).
I had to go down to
Newcastle for a Bronch and I knew on the Wednesday night Nicola hadn’t been
well. It had been a rough night but she played it down well. . . . . .
I returned back and
on the Friday morning I realised I hadn’t heard from her . . . I text her, I
text her mum and I got a phonecall from her dad. I had just sat in my car in
the driveway ready to go out and buy stuff for my graded unit when the words
from her dad felt like .. . I cant even say my heart broke, or it had been
ripped out, or I had been floored. . . . . .there are no words I can use to
fully describe the devastation and hurt and sadness , and anger I felt as if I
had been sucked into a vortex, that ear rushing noise of nothing, so loud in
your head you cant shut it up,
Nicolas doctor had told her family she was
dying . . . . . .. . . . .
I walked back into my
house, Dougie hugged me as I stood in my kitchen tears streaming down my face,
a mixture of wanting to be sick, wanting to scream, wanting to fall down and
curl into a ball and not raise my head until this horrible, nasty real feeling
dream was finished. Instead I stamped my feet with all my might, I could only
describe it as a tantrum.
I still whole
heartedly believe that I would have swapped my life for Nicolas if I could
have, if it were in my capacity to do such a thing I would have.
For those who think
that Kirsty Geddes, she’s a lovely girl, she’s so nice and bubbly and friendly
and laughs and . . . .well I’m not a patch on what she was.
I’ll maybe share one
day the coming days, one thing I will share is that my mum drove me to the
hospital, the walk from the entrance up to her room was horrible, knowing these
were going to be my final hours/ days with my best friend. Knowing I could say
nothing to make it easier for her family, knowing I wouldn’t have our stupid
chats or play rockband ever again, or share our passion for TGI’s and Chinese food,
knowing I would no longer have my confident, my rock, my angel to speak to and
text every morning and afternoon and evening, I trembled as I walked into the
ward, the nurses giving me a wee cuddle and me seeing the tears in their eyes.
But then that disappeared, I walked into Nicolas room and her mum was sitting
holding her hand and the oxygen was up so high it was all I could really hear,
and her eyes were closed and every breath taken was a gasp, a struggle, her mum said ‘here’s Kirsty Nicola’ and with
what I can imagine to be all her energy she raised her head to me and gave me
THEEE BIGGEST CHEESER EVER( I almost forgot that).
I was so fortunate to
share the final day with my best friend and her family, they very generously let me sit at her bedside
with them, I got to hold her hand and let her know how very important she was
to me, how she had saved me many a times and how she would always be my
inspiration. It all came out so easy, I needn’t have worried I wouldn’t have
known what to say, we took shifts trying to nap.
I will also always be
thankful to the staff at ward 6C, over the years they too knew Nicola so well,
she was a little shining light to them too.
I may describe her as
a bit of an angel but truly she was to me and many others.
We made a pact years
ago whoever passed first the other MUST make sure they look ok, so if makeup
was needed or hair fixing then it were to be done. PACT. When I went to see
Nicola after she had passed away in the room in the hospital, her mum (her best
friend, her carer, her confident and no1
gossip buddy) said to me ‘ you do what you need to do Kirsty’ , I worried about
seeing her lying there but I needn’t have. She was beautiful and I didn’t worry
about kissing her head and her hand and giving her a proper cuddle.
“I’ve heard it said
that people come into our lives for a reason bringing something we should learn
and we are led to those who help us most to grow if we let them and we help
them in return
Now I don’t know if I
believe that’s true but I know I’m who I am today because I knew you”
I wasn’t beside
Nicola when she passed, but she was serene, she was rested, she wasn’t in any
pain the last time I seen her.
My last words to
Nicola is that I would always love her, she was the bestest friend anyone could
ever hope for and she will remain so until the day I die. . . . .
Thelma and Louise didn’t
have a patch on us eh babe!?
My biggest regret :
Not dropping everything and spending the last few months by the side of my best
friend . . . . .. if I could go back I’d drop it in a heartbeat, I’d be there,
I’d camp out in your room with you, I’d take some of the work off of your
parents shoulders and I’d be there for you like you were for me . . . . .
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Tuesday, 16 July 2013
By gum I'm actually bouldering
After Mark Young ( a very OLD bag of a buddy) told me the other post to stop being a lazy midden I have started to put some god damn effort in, with my bouldering and it's paying off. I'm by no means good but I'm taking more chances and getting more results.
We visited Fontainebleau town today and tomorrow we shall go to GAY PARIS!!!! Finally. It has been actually a lot of fun bouldering, my legs are bruised to heck and I ave a few new scratches and cuts but you don't really notice them until you have been up and done them.
The other day we went to meet our newly engaged friends Owen and Anne Marie, they were travelling a bi around Europe and Owen proposed. I made baguettes, we chilled by the river and I got to see the seizure inducing blinger of a ring Anne Marie was sporting.
After we headed to Euro Disney, now I'm sorry should this offend, surely there will be someone out there who will take offence to it but know I say it all with a cheeky grin. Sometimes a serious illness like CF has it's upsides, you know, eating what you want, being a skinny bitch, GETTING CHEAPER INTO DISNEY!!!!
I'm a silver lining kinda girl, and I also get to skip the ques so YIPEEEE.
We had a ball, Dougie said I was like a 12 year old, and I was, with my mickey mouse top on, big sparkly bow and my hop skip and jumping, singing and dancing.
I never really heard good things about Disney Land Paris but it was AMAZING!!!!!!!!
Here are pictures of me smiling to prove it
We visited Fontainebleau town today and tomorrow we shall go to GAY PARIS!!!! Finally. It has been actually a lot of fun bouldering, my legs are bruised to heck and I ave a few new scratches and cuts but you don't really notice them until you have been up and done them.
The other day we went to meet our newly engaged friends Owen and Anne Marie, they were travelling a bi around Europe and Owen proposed. I made baguettes, we chilled by the river and I got to see the seizure inducing blinger of a ring Anne Marie was sporting.
After we headed to Euro Disney, now I'm sorry should this offend, surely there will be someone out there who will take offence to it but know I say it all with a cheeky grin. Sometimes a serious illness like CF has it's upsides, you know, eating what you want, being a skinny bitch, GETTING CHEAPER INTO DISNEY!!!!
I'm a silver lining kinda girl, and I also get to skip the ques so YIPEEEE.
We had a ball, Dougie said I was like a 12 year old, and I was, with my mickey mouse top on, big sparkly bow and my hop skip and jumping, singing and dancing.
I never really heard good things about Disney Land Paris but it was AMAZING!!!!!!!!
Here are pictures of me smiling to prove it
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Thursday, 11 July 2013
Take our breath away. . . . but not in the singalong version
Ok ok so we will recap over the life story in the coming weeks, however today I felt like harping back to an amazing quote I have up on my wall at home
Life is not measured by the number of breaths we takebut by the moments that take our breath away. -
I share this quote with you today cos I am bloody lucky life is not measured by the number of breaths we take as of late I have been hyperventalating to the maximum. I fear I would have used all my breaths by the end of this week here at fontainebleu.
Fontainebleu ?? I hear you cry - or maybe I didnt but I'm going to tell you anyway, in the north of France not far out from Paris lies this lovely little town known in the climbing world as a bouldering kind of Mecca . . . I may have taken that too far but it's a good place for those who want to risk their breaking of limbs and sweating profusely whilst trying to get to the top of 6m boulders and often higher.
Me ? I clamber, I sweat, I oan, I cry and I've sworn to a number of rock formations this week(I'm hoping the fact that surrounding fellow climbers are speaking french means that I am indeed not livng up to the weegie swearing stereotype; however I've yet to be drunk).
My first experience bouldering outside and I am ashmed to say I have went from a Utter novice (my first day I climbed 6) to a . . . . Kirsty have you even seen a rock before Bad Boulderer.
It's day four, I had hoped for improvement and instead I am enjoying reading my (mums)kindle and chilling out whilst Dougie does all the hard work.
I think holding a kindle in place for such a lengthy time constitutes some kind of very well held yoga position, and no I didn't ask for your feedback on that.
My upside for yesterday was finding porridge, I am goldilocks (however instead of ringlets I am sporting a curly frizz as Dougie pointed out) love porridge so this morning I was happy.
Nights are spent chilling out, watching a parks and recreation and lying under a mosquito mat which is dire and we like to kid on it will be my future wedding dress.
All in all so far I have done very little and actually been cool with not being busy 24/7 as I am at home.
I could, possibly, possibly, possibly (as the rev once said) get used to this.
I shall put up pictures when I can be bothered walking the 2metres over to my camera - life is hard going
A sort of brief history of me
So that was how it all began, well not really how it all began, it began when I was born. Here's a brief (or as brief as I can be for someone who likes to talk the hind legs aff a donkey) of my life so far, I'm sure we will go in to detail as we go on :
Born Nov 1983 to Nettles and Big Sandy
9 months : Diagnosed with Cystic Fibrosis - mum and dad thought the worst
11 years : Ha a great childhood, sure I took meds and got physio three times a day and knew I wasn't exactly like my big blisters (big sisters) but I was fine with that, I was spoilt more and got to eat what I wanted and I liked to fall asleep whilst my dad did my evening physio singing 'Pretty woman' to me in time with his clapping. After he would carry me up the stairs. At 11 I went into hospital for the first proper time to get polyps removed.
13 years : First set of IV's followed by a whole lot of IV's , weight was falling off me, infection was rife and the doctors warned my parents that I was faling down a steep slide that they had no idea how to stop. I spent my birthday in the hospital, I first began doing Nasal gastric feeds (yuck that took me a while to get used to) and my life changed rapidly.
13+ years : I was diagnosed with Diabetes YAY! I say yay because we now had a reason as to why I was so gravely unwell.
TEENAGE YEARS : Not only dealing with crazy hormones, all you buddies are growing boobs (even the boys had bigger ones than you) and hips and I wasn't anywhere near puberty in my body yet I had the hormones to fancy nearly every boy that stood within a metre radius of me. Looking back I'm glad I was an ugly duckling (if you had seen pictures of me before you'd understand that my formative years were much worse than my older years. My sistes teased me calling me cliff hanger - cue a very amusing night of charades for them and tears for me, as my dad tried to hide laugter whilst giving them into trouble) I never got involved with boys.
I do remember CF hitting me like a brick when I was approached by a boy in school who said to me " I heard your not going to live till your 18" BOOM, well FECK YOU TOO!
I got three monthly preventative IV's and regularly was in for antibiotics when I needed them. I continued with the feeding through all my teenage years, I would become the nasal gastric queen.
LATER TEENAGE YEARS : I tried to smoke once, thinking it would instantly make me seem a lot cooler- it didn't I choked I thought better of doing that but my friends like to remind me every so often about that.
I started to drink and tried my hardest to hide it from my parents, they weren't stupid but neither was I a huge drinker. Until the night at Monklands, we may come back to that.
I got accepted into uni at Caledonian to do Fashion with business, great! Clothes making!! NOT, it was all business. I like to blame the fact that clothes making wasnt a huge part of it as to the reason why I dropped out after a year. However, I liked going out too much, I liked to party and I went through a damn crazy time where I didnt take my meds or do anything remotely related to everything I should have been doing for CF.
I call this time my TRULY CRAZY ARE YOU FECKING NUTS DENiAL TiME. I got a job in Miss Selfridge and sometimes showed up for Uni, I partied, I felt great, I began asking myself are the doctors right? Do I really have CF? Maybe all this time 17 FRICKING years they have been wrong, and then I went on fmily holiday with my sister and her wee one Tamsyn. And I got a cough, and I got ill, and on my return I couldn't push my trolley with my bag on it.
TURNS OUT THE DOCTORS WERE RIGHT -I HAD CF - ha ha ha I was sat down by my CF team with my parents and told by my doctor that if I were to carry on, on this route to self destruction I would most certainly reach that DESTRUCT button much faster than I even though.
So I buckled down, gave up Uni, gave up work, it's pretty amazing what getting told you are going to die can do for you.
I bubbled through life having ups and down health and well being wise and then I met someone and I really wanted to try my hardest, I was still doing feeds, I was still doing physio, I kept all this quiet from him for three months.
We were together for a year and a half before the shit hit the fan, my CF had been declining slowly, low lung function but I was still functional - it's amazing what your body can cope with.
I had a MASSIVE lung collapse in his room one night, I apologised to him that I was going to die right here.
I didn't and again we will delve into this at a later date.
I was put on the tx assesment list, the docs at newcastle told me they didnt know how my body was still functioning with the results my tests had shown. After they told me that, it was like my mind gave up a little, it could no longer hold the fort as well as it had.
I was thankfully put onto the tx waiting list.
During this time I had studied beauty therapy and hairdressing and was now studying Makeup Artistry.
June 2009 - I went to ROckness and was blue, I was on deaths door and I couldn't walk even tiny steps. I had never experienced a total lack in control like this, my body was shutting down. Aware that this was going to be my last festival I stayed all weekend with my friends. I went home to the hospital to be told they didn't think I could live through this one. The palative care team were being called. I never told anyone about that conversation until after my transplant (tx).
Okay dokes 10th Nov 2009 - Day after my bday and I got a call to say that I had to go to the hospital, they had lungs and I was the standby(means that the lungs were going to someone else but if they were not well I would be next in line), half hour later and I was told I was the reciepient if the lungs were good. And they were.
Nov 11th 2009 I was given thee most amazing gift anyone could ever give, the gift of LIFE and HOPE and POSSIBILITIES where there had been none.
2009- present day I have had such a wonderful time, I got my dream job, met so many wonderful people, I have loved, laughed , danced my heart out, shared the message of transplant and my story to everyone and anyone that will listen. I have also lost my best friend to Cystic Fibrosis but there will be time for all the magical people who are and were part of my life.
And today - I sit in a campsite in France, my partner DOUGIE and I have embarked on a three month holiday around Europe with our doggy Dexter.
And I have chronic rejection, my lungs are slowly being destroyed by the white blood cells in my body (Hey they are only doing their job). Thus the name Chronically Positive. Like I tell everyone, sure I may have had a few rough times of it, but everyone has to deal with the cards they are dealt, I choose to throw those cards as high in the air as I possibly can whilst throwing down some moves on the dance floor, smiling away and singing my heart out. There are only two ways you can live your life, on the Up, or constantly looking down.
Look up to the sky and aim for the stars!! xx
Born Nov 1983 to Nettles and Big Sandy
9 months : Diagnosed with Cystic Fibrosis - mum and dad thought the worst
11 years : Ha a great childhood, sure I took meds and got physio three times a day and knew I wasn't exactly like my big blisters (big sisters) but I was fine with that, I was spoilt more and got to eat what I wanted and I liked to fall asleep whilst my dad did my evening physio singing 'Pretty woman' to me in time with his clapping. After he would carry me up the stairs. At 11 I went into hospital for the first proper time to get polyps removed.
13 years : First set of IV's followed by a whole lot of IV's , weight was falling off me, infection was rife and the doctors warned my parents that I was faling down a steep slide that they had no idea how to stop. I spent my birthday in the hospital, I first began doing Nasal gastric feeds (yuck that took me a while to get used to) and my life changed rapidly.
13+ years : I was diagnosed with Diabetes YAY! I say yay because we now had a reason as to why I was so gravely unwell.
TEENAGE YEARS : Not only dealing with crazy hormones, all you buddies are growing boobs (even the boys had bigger ones than you) and hips and I wasn't anywhere near puberty in my body yet I had the hormones to fancy nearly every boy that stood within a metre radius of me. Looking back I'm glad I was an ugly duckling (if you had seen pictures of me before you'd understand that my formative years were much worse than my older years. My sistes teased me calling me cliff hanger - cue a very amusing night of charades for them and tears for me, as my dad tried to hide laugter whilst giving them into trouble) I never got involved with boys.
I do remember CF hitting me like a brick when I was approached by a boy in school who said to me " I heard your not going to live till your 18" BOOM, well FECK YOU TOO!
I got three monthly preventative IV's and regularly was in for antibiotics when I needed them. I continued with the feeding through all my teenage years, I would become the nasal gastric queen.
LATER TEENAGE YEARS : I tried to smoke once, thinking it would instantly make me seem a lot cooler- it didn't I choked I thought better of doing that but my friends like to remind me every so often about that.
I started to drink and tried my hardest to hide it from my parents, they weren't stupid but neither was I a huge drinker. Until the night at Monklands, we may come back to that.
I got accepted into uni at Caledonian to do Fashion with business, great! Clothes making!! NOT, it was all business. I like to blame the fact that clothes making wasnt a huge part of it as to the reason why I dropped out after a year. However, I liked going out too much, I liked to party and I went through a damn crazy time where I didnt take my meds or do anything remotely related to everything I should have been doing for CF.
I call this time my TRULY CRAZY ARE YOU FECKING NUTS DENiAL TiME. I got a job in Miss Selfridge and sometimes showed up for Uni, I partied, I felt great, I began asking myself are the doctors right? Do I really have CF? Maybe all this time 17 FRICKING years they have been wrong, and then I went on fmily holiday with my sister and her wee one Tamsyn. And I got a cough, and I got ill, and on my return I couldn't push my trolley with my bag on it.
TURNS OUT THE DOCTORS WERE RIGHT -I HAD CF - ha ha ha I was sat down by my CF team with my parents and told by my doctor that if I were to carry on, on this route to self destruction I would most certainly reach that DESTRUCT button much faster than I even though.
So I buckled down, gave up Uni, gave up work, it's pretty amazing what getting told you are going to die can do for you.
I bubbled through life having ups and down health and well being wise and then I met someone and I really wanted to try my hardest, I was still doing feeds, I was still doing physio, I kept all this quiet from him for three months.
We were together for a year and a half before the shit hit the fan, my CF had been declining slowly, low lung function but I was still functional - it's amazing what your body can cope with.
I had a MASSIVE lung collapse in his room one night, I apologised to him that I was going to die right here.
I didn't and again we will delve into this at a later date.
I was put on the tx assesment list, the docs at newcastle told me they didnt know how my body was still functioning with the results my tests had shown. After they told me that, it was like my mind gave up a little, it could no longer hold the fort as well as it had.
I was thankfully put onto the tx waiting list.
During this time I had studied beauty therapy and hairdressing and was now studying Makeup Artistry.
June 2009 - I went to ROckness and was blue, I was on deaths door and I couldn't walk even tiny steps. I had never experienced a total lack in control like this, my body was shutting down. Aware that this was going to be my last festival I stayed all weekend with my friends. I went home to the hospital to be told they didn't think I could live through this one. The palative care team were being called. I never told anyone about that conversation until after my transplant (tx).
Okay dokes 10th Nov 2009 - Day after my bday and I got a call to say that I had to go to the hospital, they had lungs and I was the standby(means that the lungs were going to someone else but if they were not well I would be next in line), half hour later and I was told I was the reciepient if the lungs were good. And they were.
Nov 11th 2009 I was given thee most amazing gift anyone could ever give, the gift of LIFE and HOPE and POSSIBILITIES where there had been none.
2009- present day I have had such a wonderful time, I got my dream job, met so many wonderful people, I have loved, laughed , danced my heart out, shared the message of transplant and my story to everyone and anyone that will listen. I have also lost my best friend to Cystic Fibrosis but there will be time for all the magical people who are and were part of my life.
And today - I sit in a campsite in France, my partner DOUGIE and I have embarked on a three month holiday around Europe with our doggy Dexter.
And I have chronic rejection, my lungs are slowly being destroyed by the white blood cells in my body (Hey they are only doing their job). Thus the name Chronically Positive. Like I tell everyone, sure I may have had a few rough times of it, but everyone has to deal with the cards they are dealt, I choose to throw those cards as high in the air as I possibly can whilst throwing down some moves on the dance floor, smiling away and singing my heart out. There are only two ways you can live your life, on the Up, or constantly looking down.
Look up to the sky and aim for the stars!! xx
Labels:
biography,
chronic rejection,
cystic fibrosis,
Diabetic,
doctors,
family,
Freemans Newcastle,
glasgow,
hospital,
illness,
life,
love,
lung transplant,
make up artist,
oxygen,
positive,
scotland,
transplant
And welcome readers
So in September 2012 I posted this to facebook :
ello everyone,
It's taken me a while to come to this decision but I wanted to share this with you now as I have had some months to think about it and mull it over. Three months ago I was told the words "You have the beginnings of chronic rejection" also nown as BOS I beleive, and by heck did it floor me.
Blubbering wreck of a usual happy smiley me set in and for the first few days I really struggled. See I dont know about you guys, but those words are the words that mean the end of the line to me. They made me assume the very worst and made me panic that I wasn't ready yet.
How wrong was I?
On investigating, talking, researching and speaking with docs I have found that indeed they do not mean the end of the line. My lung function is still a very nifty 103% and I'm still full of life.
It means I have to be extra diligent but my lungs haven't deteriorated at all. My initial drop happened last February and since I haven't had anything but they only CT scanned me a couple of months ago.
So heres the story so far, I didn't want to tell the TX community as i didn't want pity, I didn't want anyone to think my fight was done and I think thats because I felt it had at FIRST.
But now I am looking at it as a kick up the backside, we are all aware that TX doesn't last forever, but it gives us time to spend with those who matter most doing what we have dreamed of.
And I know I am very fortunate, I am almost three years down the line and have had the most amazing experiences and met the most wonderful people.
I guess I'm posting this because there will be others getting told this news and I want to save them the drama queen or king episode. Chronic rejection like everything else is only a name, its now up to me what I make of it .
To some this isnt an ideal way of finding out and I totally understand that, but if I sit you down and tell you it would only seem more dramatic and I'm way over that crap.
A new chapter has began and I'm excited to see where it will take me.
Thanks guys xxIsn't facebook the bizz just for spilling this kinda melodramatic story line.
ello everyone,
It's taken me a while to come to this decision but I wanted to share this with you now as I have had some months to think about it and mull it over. Three months ago I was told the words "You have the beginnings of chronic rejection" also nown as BOS I beleive, and by heck did it floor me.
Blubbering wreck of a usual happy smiley me set in and for the first few days I really struggled. See I dont know about you guys, but those words are the words that mean the end of the line to me. They made me assume the very worst and made me panic that I wasn't ready yet.
How wrong was I?
On investigating, talking, researching and speaking with docs I have found that indeed they do not mean the end of the line. My lung function is still a very nifty 103% and I'm still full of life.
It means I have to be extra diligent but my lungs haven't deteriorated at all. My initial drop happened last February and since I haven't had anything but they only CT scanned me a couple of months ago.
So heres the story so far, I didn't want to tell the TX community as i didn't want pity, I didn't want anyone to think my fight was done and I think thats because I felt it had at FIRST.
But now I am looking at it as a kick up the backside, we are all aware that TX doesn't last forever, but it gives us time to spend with those who matter most doing what we have dreamed of.
And I know I am very fortunate, I am almost three years down the line and have had the most amazing experiences and met the most wonderful people.
I guess I'm posting this because there will be others getting told this news and I want to save them the drama queen or king episode. Chronic rejection like everything else is only a name, its now up to me what I make of it .
To some this isnt an ideal way of finding out and I totally understand that, but if I sit you down and tell you it would only seem more dramatic and I'm way over that crap.
A new chapter has began and I'm excited to see where it will take me.
Thanks guys xxIsn't facebook the bizz just for spilling this kinda melodramatic story line.
Labels:
biography,
chronic rejection,
cystic fibrosis,
Diabetic,
doctors,
family,
Freemans Newcastle,
glasgow,
hospital,
illness,
life,
love,
lung transplant,
make up artist,
oxygen,
positive,
scotland,
transplant
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