To you it may be just a dog but to me, she's my best friend. 

My happy place, my light of my life. The one I can cry to and tell my secrets to, knowing she won't tell anyone. The one I know who will be happily waiting for me with unconditional love when I get home. To me, she's the piece of my heart I never thought I'd need to face losing but the time has come where I just don't know how much longer I have with her. 

I love you hub, near or far.
"The person who said diamonds are a girls best friend never owned a dog."

Rest in peace Sarah - 10th February 2000 til 24th December 2013.

My wish

I hope the days come easy and the moments pass slow

And each road leads you where you want to go

And if you're faced with a choice and you have to choose,

I hope you choose the one that means most to you. 

If one door opens to another door closed,

Keep on walking till you find the window. 

If its cold outside show the warmth of your smile. 

But more then anything, 

My wish is that this life becomes all that you want it too.

Your dreams stay big and your worries stay small. 

You never need to carry more then you can hold. 

And while you're out there getting where you're getting to,

I hope you know that someone loves you and wants the same things too. 

This is my wish for you. 

I love you mum & dad. 

 

Happy home day.

Day 16 of my hospital admission and I've finally got the okay to go home. Yes, this was one of the roughest admissions I have had in a very long time, and no I don't feel great but I've learned to accept that I won't feel 100% until transplant time comes. I can't wait to get back to my own bed, my own bathroom and my puppy dog who I miss dearly! It's been 16 days too long. I just want to pack my stuff and get out already! 

Every rose has its thorns and cystic fibrosis definitely is a rose with a fair few! 

My puppy dog whom I miss like crazy! I'm coming home baby ❤️

Day 10

     

It's a new day..

During this time I've learned that, who doesn't look for you, doesn't miss you and who doesn't miss you, doesn't care for you. Destiny determine who enters your life but you're the only one who determines who deserves to stay. That the truth hurts only once but a lie will hurt every time you remember it. And most importantly, there are three things in life that leave without any return; words, opportunity and time. Therefore, you should always value the ones that value you, but don't give anyone the chance to treat you as an option if they're one of your priorities. 

If you can't stick with me consistently through the bad. Don't show your head during my good times. 

Day 9 of my hospital admission, my lung function has gone up 4% but I'm due for another today. Fingers crossed! I'm always looking at the good now, taking each day as it comes and taking the good with the bad. Life's too short to live in the past and dwell. Time is of the essence and everyday is a new day 😊 

Holding on tight.

There's so many ways you can be broken in two but what if it was you who was breaking you in two... And you had no control? Nothing you do, nothing you say... Everything is beyond your control. They say life's a journey, but I wish my path wasn't the one to be worn. How do I stop? How do I turn around? Go back? Turn in a different direction? Guess it's a one way highway and I've come way to far now... May as well just keep going. 

What do you do when you feel like you're drowning while watching everyone breathe at the same time?  

Another day - not feeling the love from my beloved disease. More blood gasses, more x-rays, more doctors, more oxygen, more observations. But whatever. I'm done with it and come to the conclusion that whatever will be, will be. 

Such is life. 

Emotions running high

Laying in my hospital bed. It's 11.22pm on Sunday the 17th of November, 2013. The weekend has been emotionally tough - but I'm proud. I've done well. But just now, everything has hit me. Statistics more then anything. Numbers. Facts... Everything that lays just around a short corner from me now is approaching fast. I wish now more then ever I could slow down time. I'm losing at least 5% of my lungs per week. I have a working 30% at the moment... You do the math. I pray this slows down or my lung function stabalizes itself. Or even better... Miraculously goes up. Even if I gain a 5% more just so I can buy more time. My thoughts need to sleep and so do I. Xx

On the fourth day...

Saturday, November 16th. 

This weekend is my weekend to work my ass off, as Monday is judgement day. 

Oh my god, the day my doctor decides if lung transplant is the way to go or not. Nervous as hell? Understatement. If you know me well, you wouldn't have thought that this day would come around so fast. I always said that I would live as long as possible with my own lungs.. 19 years? That's not long enough! I don't know how I got here and I don't know why it happened so fast but all I know is that only time will tell what's best for me. 

Yesterday my man bought the most amazing flowers for me! 

I love him to pieces. Thanks babe 💗

"Finish every day and be done with it; you have done what you could. Some blunders and absurdities no doubt crept in; forget them as soon as you can. Tomorrow is a new day; you shall begin it serenely and with too high a spirit to be encumbered with old nonsense."

Day 2

It's 11.51pm on day 2 of my hospital admission - things are getting tougher but I never said I was getting weaker.

Current lung function percentage: 30%

Another all time new low. Another slap to the face, another tear shed about the same thing, another day that I have lived through despite the new struggles that have come my way.
Today I received confirmation from my doctor, Professor. By that this will be my last admission before the doctors make a definite decision to whether it's my time to be worked up and evaluated to have double lung transplant. Something I have been avoiding to hear all my life.
Every time the topic of transplant comes up in a conversation with a medical professional it freaks me out and I feel like running for the hills. 

So what, today wasn't the greatest but it doesn't mean tomorrow won't be better. Things take time and good things come to those who wait. I can be patient. 

Another admission.

It's November 13th - Day one of my planned admission. My 3rd admission of 2013 - and by the look of things, it most likely will be my roughest. Already I feel like I've been put through the ring. I didn't come here this prepared! Already on a continuous flow of oxygen, had my blood gas test done and a few other blood tests - of which I have no idea what they were for. I guess that's what happens when you're a regular - you get used to it. Sadly. 

Life isn't ever what it seems, is it? The only thing that's garaunteed is death. At the moment, there's not much more I know - or maybe just not much more I'm thinking of. It's funny, one minute i'm wondering if this is just a test from God and telling myself that he wouldn't give me anything I couldn't handle - but in the next breath, I'm wondering if there is a God. 

In tough trying times, sometimes dragging behind them are bittersweet lessons. Like who your true friends are, or even better, what family is holding your hand through it all, with loyalty being held in the other. Fortunately for me, I have so many supportive friends but can count on one hand how many supportive family members. Not many people realise how much a simple card or message or 'thinking of you' can really do when someone is going through unfortunate events. In the past week, I've had limitless messages, calls and texts from friends, telling me they're thinking of me and other kind messages. If you're one of those beautiful people, this ones for you, cause you have given me more hope and more happiness. ❤️ 

There's always a rainbow after the rain - so they say. 🌈

      Photo taken 13/11/2013

The waiting game

It's day 2 of waiting for a bed in hospital. 

As I approach admission territory, packing my bags for two long weeks and thinking

about what I'm going to fill my belly with while I'm in there is all that's 

on my mind! Thai being my favourite food, makes me one of the lucky ones - 

as Newtown is packed full of amazing Thai restaurants! 

Everyday may bring a new difficulty, a new battle, a new fight but it 

also almost always brings with it blessings and things to be thankful for. 

Everyone has their good and bad days - but seeing the good in the bad days

is what makes life special. I always remember that the things I take for granted,

someone in the world is praying for.   

    

Photo taken 11/11/13

          

Yesterday, I had my check up at the hospital for the first time in just over 3 weeks.

I hadn't been feeling great so I wasn't too sure just how my appointment

would go.. First up, lung function time! Not my favorite thing to do lately.

What?! 35% lung function.

My heart sunk and I could feel myself becoming light headed..

Afterward it was time to see Professor Peter Bye.

My CF specialist, a great doctor at that - he definitely earned his title.

Waiting, waiting, waiting... Finally, my doctor entered the room.

I go on explaining to him all my symptoms -

"I've been experiencing severe chest pain all down my left side, my fractured rib symptoms aren't any better, when I cough I feel like someone is squeezing my lungs from behind, I'm bringing up a lot more mucus then usual, I'm always tired, continuously coughing, I can't sleep at night because I'm so uncomfortable, I'm breathless and can only walk 10 meters on the flat before I get breathless."

Honesty is the best policy but at the same time - I knew only too well where this conversation was headed. Immediately, I was asked to be admitted into hospital, but refusing till next week. He agreed.

Checking my heart and oxygen saturation out of concern, I was told my heart rate was beating way to fast considering I had been sitting for over an hour doing nothing, and perhaps it was because of my severe pain. That's not what I wanted to hear! But neither was being told straight after that we will shortly start to discuss lung transplant.

My world has turned upside down. Where do you go when you can't turn around? 

2013, The year, the changes...

I kicked off the year with a stable 60% lung function, still partying every weekend, 

still going strong - I found my current love in January while I was 

out clubbing with my best friend, Morgan - who also has cystic fibrosis. 

My boyfriend; Jordan, made it official for us in march but little did I know, this was 

the month my life would start to change.

Continuing still, parties and excessively drinking.  My health was slowly deteriorating. 

It was early May when my doctors had decided it was time for another admission -

My first admission however at Royal Prince Alfred and my first proper admission in 18 months. 

My lung function hit an all time low of 48% - scaring the life out of me, 

I knew the party was over. My admission was for 2 weeks, on discharge I only received 

a 4% improvement of lung function - despite all the hard work and medication.  

August 2013. 

Jordan and I had booked a holiday to Phuket Thailand for October. 

By this time, I had fallen completely and whole-heartedly in love with 

this man and thought it was completely appropriate to think about future plans with him. 

I had another admission in this month, although my best friend was in Europe for

3 long months - she was still supporting me best she could from the other side of

the world. My lung function had hit another new low, 39%. 

How was this possible? 

All of a sudden. How did I not see this coming?

I left hospital just under 2 weeks later with a dissatisfying lung function of 44%. 

This is not where I wanted my life to be going at a young 19 years old. 

Cheers to the teenage years!

At age 13 I started high school- they without a doubt, were the best years of my life. 

School camps, dance competitions, high achievements and life long friends.  

Unfortunately I only got to spend 3 years in high school before getting 

exempt by doctors. My time in school was up. 

I was suffering from severe hymoptysis; the expectoration of blood from both of my lungs. 

I spent 39 days in hospital - 5 days in the intensive care unit. I was 15 years old and I knew my life was all about to change. The hymoptysis continued daily for 7 months straight, with every cough there would be some kind of amount of blood.  This would be one of the scariest years of my life. 

In October of 2008, I was operated on to stop the bleeding, an embolization.
It was successful for 6 months - when - I started to have small amounts of blood in my sputum. 

In 2009 I enrolled in TAFE. 

Achieved my school certificate equivalent and also my business certificates I, II and III. 

In 2010 I went on to complete my business diploma - fitting all my studies in between hospital admissions, 3-4 times per year, each being for 2-3 weeks at a time. 

In 2011, I decided on a career change - childcare - but it only took me 

4 agonising months to realise that not only was this career path making me sick,

I also had a boss who couldn't support my terminal illness. 

I enrolled back in TAFE, July of 2011 and once again, another career path,.

Nail Technology, certificate III - completed with flying colours. 

It was around this time that I had my first love, who broke my heart 14 months later. 

In 2012, I transitioned from the Children's hospital at Westmead 

to the Westmead adults hospital and then to Royal Prince Alfred in Camperdown 

- where I still receive my treatment.

While my transition was happening, I had celebrated my 18th birthday and 

I was still studying, but this time I went for something bigger and better. 

Diploma of Beauty Therapy - Completed with flying colours. 

Partying, clubbing, friends and family.
Life couldn't get much better then this! 

Morgan & I. 

The beginning, the diagnoses, the early childhood.

"It was a dream pregnancy, no complications, I was full term. When I gave birth she was the most perfect child, dark skinned, lots of black hair, gorgeous little baby. The perfect gift."

- Michele Richards, my mother. 

That was until I was 36 hours old, the unthinkable happened. I stopped breathing. 

"I heard doctors from a couple rooms down... 'Breathe baby, breathe'. Curiosity got the better of me and I decided to take a walk down the hospital wards hallway. King George IV, Camperdown, and there she was, my baby. Upside down with an oxygen mask held over her tiny mouth and nose. Hysterically, I screamed."

And that was where it all began, I wasn't eating properly, a first time mother, she thought it was her being nervous but it wasn't. My bowels and stomach weren't functioning properly. I wasn't breathing right, either. A strong baby though, I fought from day one. 

I was diagnosed with meconium ilius. Emergency surgery. Life saving. 

I was diagnosed, then and there, it was official. 

"You're baby has cystic fibrosis."

Mutation, double delta F508 - that's me. There are so many different mutations of Cystic fibrosis and unfortunately DDF508 is one of the worst mutations to be diagnosed with. Cystic fibrosis or, CF is a genetic disease - meaning both parents need to carry the gene in order to create a whole. Having the CF gene, does not affect you, but if you have a child and both you and your partner are gene carriers, most likely your child will be a sufferer. 

Throughout my early childhood, I usually was admitted to hospital Round 3-4 times per year.
During admissions I would receive a course of intravenous antibiotics, 
physiotherapy to help clear my lungs 2-3 times a day,
plenty of food to help with weight gain and plenty of rest. 
My admissions would usually last for around 2-3 sometimes 4 weeks at a time. 

A stable, happy childhood. An only child.
Losing a little brother because he had CF and was to weak to fight. 
A lung capacity always sitting at around a stable 70-80%, a wonderful team of doctors
and a supportive mother and father always got me through.
 A high achiever in school, a dancer, a goal setter.