Serenity at last

How on earth I get anything done is a complete mystery to me. I work my ass off during the week - normally 7-5.30 Mon-Wed and Thursday and Friday mornings. Then I spend my Thursday and Friday afternoons attending medical appointments, physio, Doctor, speech pathologist. Sometimes it takes an hour to get from one side of town to the next. Then if i get a chance I wait 20 minutes on the phone to centrelink, almost as long on hold to the insurance company, other medical practitioners making other appoinments. I need to come home every so often to my mum's house and have some rest from the world outside. She lives among the trees still, about 45 minutes away from the city. Which is where I am now. It's so nice to escape to this place. There are no sirens going past every five minutes here, no planes roaring loudly overhead. There is the chirp of birds and the sound of the humidity so it's mostly very silent. I can sit here and listen to my thoughts. I can sleep. I can play with my puppy. There are not many of my friends living out here anymore. Lots of them have moved away to the city near where I live or overseas. I know I don't have to see anyone when I come up here. Sometimes the choice to come up here is a lonely one. My mum works and sometimes she goes out at night, so I am lucky to see her. But at least I know I have the place to myself and I am so lucky that I am so welcome here and I feel so peaceful. It's the only consistency I have in my life. If only I could share it with someone special because it truely is a wonderful place to be.

Rose Tattoo (not the band)

Seeing as the marketing for Cystic Fibrosis is completely useless, I decided to take matters into my own hands and make MYSELF the poster girl for CF. I decided on a good marketing strategy to get the message out once and for all! It all stems from the rose, being the elegant and meaningful symbol for Cystic Fibrosis. It's meaning comes from the small child who mis-pronounced the words Cystic Fibrosis and instead said 65 Roses. This turned into a poem which turned into a song, which turned into something that Angry Anderson of Rose Tattoo stood up and said, raaahhhh about, jumping on the very small and crowded band wagon of people who know someone who has CF and wants to help. Let's get a bigger wagon, I say! CF Australia could certainly use the exposure. So I am offering to expose myself. Right here on this blog. I have taken the symbol for CF and had it tattoed on my back.

How it all began...

My brother has many tattoos. One night, not too long ago, we were out together and I was asking him which tattoo he was going to get next. He has CF too. He's the type of guy who wears it on his sleeve and so he said he'd like to get 65 roses tattoed on his arm. I thought it was a beautiful idea, so I told him I would get it too.

So there I was, sitting on the tattoo chair, having my back prepared. It was my first tattoo, and instead of 65 roses I got two Roses (there is plenty of time to add the other 63 later on). My brother took me to see his friend, a tattoo artist at Wicked Ink, who did a really great job.

It felt half way between a bee sting and that feeling you get when you're sunburnt and someone keeps slapping you on the back. I thought the pain was nothing compared to what I've put up with during all of my hospital admissions. It took three hours. As my brother watched the birth of the artwork on my back, he told me how great it was coming up on my skin and later told me how well I sat for it, saying I didn't even flinch.

Now I have two roses on my back. One represents my brother and the other represents me...we are both proud and enduring people, marked and now tattoed with CF.

Tampon truck

About 6.30 this morning, something occured. That's a bit early for anything to happen I hear you say...

Well it's not too early to get hit by a pink truck on your scooter. Yep. I got hit. By a stupid pink tampon truck as he crossed two lanes. He didn't look at all - just turned into me. I ran into the side of the truck. Lucky for me I was going very slowly and had some time to slam on my brakes, he was also turning very slowly. I almost thought for a second that I was going to come out of it without getting hit, but he continued to turn, not seeing me, until he hit me. I'm not even sure he realised he hit me until he heard the bang, as he made his left hand turn. My bike wasn't even knocked over and I didn't fall off. My shoulder slammed into the side of the stupid pink truck.

I was ok, the bike is undamaged. I hope there is a big dent in his truck though, coz the stupid jerk drove off then slowed down and then drove off again. Meanwhile a guy waiting in a truck at the lights saw the whole thing, wound down his window and called out to me. He said that guy who hit me didn't even look. He asked if I was ok. I seemed to be alright, nothing was hurting and the bike appeared to fine... So I continued to ride to work.

Anway now at work I had a bit of a de-brief session with my boss - he's rad. He told me a story about an accident he had on a motorbike when he first moved to sydney. He said he was unconcious, broken knee caps and all and spent two weeks in hospital after a lady ran head first into him. I'm thinking, I've been in hospital before - i know how shit that is but this is one hospital story I hope I never have. He said they pumped him with opiates when he was unconcious to help him with the pain, which turned out to be really bad becasue at the time, he just got back from overseas where he'd been using a lot of opium and he was trying hard to get off the stuff.

At first I thought it's bad enough, as a woman, I have to get periods, now a tampon truck hits me when I'm on my scooter. But after the good sharing sesh with my boss I felt much better about my close run in with the pink tampon truck.

the story so far....

I was born with a genetic condition called Cystic Fibrosis. My big brother was born three years earlier with CF so when I was born my parents we're neither shocked or inexperienced in caring for another child with the disease. At first it was a surprise. Back then there was no screening to confirm the presence of the CF gene. I was born a chubby and very healthy 9-pound baby. It was only when my mother kissed my head that she could tell I had CF, like my brother. She tasted the salt on my head - one of the symtoms of CF is that the body loses salt. After sport or in this case the very act of being born, a child with CF has salty skin.
Nevertheless I was a healthy child. My brother's birth was more complicated, he was born with a common problem to CF babies - meconium ileus - blockage in the bowel. He was born weighing 7 pounds and had to have an operation immediatly after birth in order to remove the blockage, quite a delicate procedure which left him slightly weakend. He survived which to this day at 27 years of age remains his legacy - he's a survivor.
I am now 24 and have had my fair share of health issues in that time. My childhood was great and my CF was extemely well- managed due to the patience, care and medical knowledge of my mother, radiographer to the stars. Nothing ever surprised her or made her queezy. My brother and I had so much energy and participated in so many different sports from trampolining to baseball, netball and soccer (many of which sports we seemed to have a natural affinity for, all these physical activites are credited for our healthy early lives.
It wasn't until I was 12 years old that CF became more of a burden to me in my everyday activities. By then I'd had my first admission to hospital and my parents were going through a separation. After that I had a hospital admission each year and I had to see the specialist more often, sometimes once a week, so they could keep an eye on me. By the age of 16 I wasn't as active as I once was, I would become breathless during sporting games and it became a struggle to get anything done. It seemed my lung function was below 30% - those kind of figures indicate lung transplant to the experts.
Meanwhile, my brother had had a liver transplant after his liver had failed - a complication of CF, mainly seen in males. He waited 9 months for a liver transplant. He survived but it was a very difficult time for the family.
I made it through school, even though there were many days I either was too sick or was wagging and hanging out with my boyfriend or both. I was so lucky to have such an amazing friend in my boyfriend. We were together for 4 years. We are still very good friends now. I was equally lucky to have an excuse for having loads of sick days... well it's one of the very limited bonus's of CF! With all that going on I got through my final year. Although in that difficult year my lung collapsed (a pneumothorax) and I was told I couldn't play the trumpet or play any netball. Netball was the one thing that I felt was doing me any good, but soon I couldn't even walk up a flight of stairs without being short of breath and almost unable to breath. It was very scary for me, as I knew I was getting closer to going on the transplant list for a new set of lungs. I had been playing the trumpet for 7 years and it was the instrument that I had chosen to play for my music exam for the HSC in my last year, but I wasn't allowed to play otherwise my lungs would surely collapse again. I felt extremely depressed. I didn't want to finish my schooling at all. I wanted to leave it all behind and move to the country side. But by some miricle I made it through and finished school.
After school, I went to university in Albury-Wodonga to study Biological sciences and I was happy because I had always dreamed of living away from the city. It was a great year - I met new friends, a new boyfriend and I felt healthier than I had in years. Things began to change for me - although I was still having regular hospital admissions and my lung function wasn't improving all that much, I still felt better. Sometimes numbers and statistics on medical tests have no bearing on how you actually feel. They don't always correspond.
In order to cut a long story down to medium length I have been brief and will continue to be brief in bringing up to date with the present.

I now work as a website editor and online producer and I have been offered an intership as a radio journalist in Germany. I leave soon. My health still has its ups and downs. I'm always on trial, I'm always pushing it, putting my mettle to the test, sometimes too far, to see what my body can do. Right now, I'm in control and even if I wasn't I have been through a lot and I reckon I have the courage to make it through anything. If I had the choice to be rid of CF, I would chose to keep it, because it's made me who I am. I wouldn't have it any other way. I have CF and you might think that's a pity for me, but I don't know any different, or what life is like without it. Also I am more than open to see what life could be like without CF, and so as the search for a cure continues, I live my life as normally as I can. It's a different life to any of my friends but I still have goals and dreams, and I am more than capable of fulfilling them. It's an extremely exciting ride to be on!

An update

It's been a while since my last post, this could either be interpreted as an extremly good thing or something worriesome. Fortunately I consider it a good thing. Things have been steady for me, no chest infections no flares up, no feelings of depression or need to get any horrible thoughts down on the page. Everything is ok. Also my absence could possibly have meant I was ill which is not the case, just extremely active and busy.

I have resigned from my full time job at the radio station to pursue an opportunity working part time at a magazine as a journalist, which is really exciting for me. I am also returning to uni this year for a few night classes to complete my post graduate studies in Journalism.

It turned out that my sinus surgury needed to be postponed due to work committments and I still haven't gone in for the operation. Luckily I have only had a few minor problems with the nostrils over the last few months. I am now having the surgury on the 26th Feb. Will blog about how it goes as I will need to be admitted for several days in the lead up to the surgurgy to make sure my health is good, reducing any risk of infection. I find being stuck in hospital is enough inspiration for me to write.

One thing I am very happy about right now is the wonderful people I have in my life. I cherish my friendships of those I see often and those that live far away but are atll very close to me. Without them life would be very different through my eyes. My family are also extremely wonderful. My mum, my dad and my brother, even though I don't live with or near any of them anymore, they are a phone call away and always keen for that all important chat. My love to them all.

If I Only Had a Brain

Today is BLOG ACTION DAY and it's about time we raised some global environmental issues. On my way to work today I walked past a busker who was playing 'If I Only Had a Brain" from the Wizard of Oz on his trombone. If I remember back to the days when I played dorothy in my year six primary school musical the words go a little like this... "I would while away the hours conferring with the flowers, consulting with the rain. And my head I'd be scratching while my thoughts were busy hatching if I only had a brain". Well I'm just going to point out that he was a scarecrow and he had some pretty good ideas, you might say they were no brainers but I would say he was onto something. Unlike my unfortunate friend the scarecrow who didn't have a brain, we do. We can put our brains together and take a stand to inform ourselves an d those around us about the severe impact us humans can have on our environment if we don't think. I don't hear anyone these days saying they would like to confer with the flowers and I think there should be more of it! More appreciation of what mother nature provided for us. We certainly have flowers even if it takes a bus ride out of the city to discover and I mean a bus ride, you don't need that 4WD to get you across town everyday do you? What we don't have much of in this beautiful country is rain! and while I wish I could while away the hours conferring with the flowers and consulting with the rain, I think I should be consulting with you and the rest of the world on this issue. Lets conserve our biodiversity with simple things like saving water, saving energy and keeping you cat in at night...

Take note of what goes down the drain: Don't put oils, fats or harmful chemicals down the sink-they will eventually end up in the rivers, lakes or oceans and harm our water quality and wildlife. Use a strainer in the kitchen sink to collect solids from your washing up water. and another tip just in case you needed another idea... Conserve water: Install water conservation devices in the home, school and workplace. Triple A shower heads, flow restrictors on taps, and dual flush toilets can more than halve the amount of water you use, which will save you money too. (This last Paragraph info c/o the department of environment and water resources)

Blog Action Day

Tomorrow is blog action day and I will be be blogging along side thousands if not millions of others in order to raise important environmental issues. Please Join US!