I am not ok. But I will be.

I am a little over it. My skin has been sore for around a month now, and while I know it will return to its own kind of normal soon, the pain is a burden. I am physically tired, and tired of saying that I am not ok.

I am sore. The hospital stay did me good. It healed my legs, and I got rest. But on returning home, my top half became very sore. It burned and throbbed, and moving, sitting, lying and walking was hard. Wearing clothes has been hard. Being in bed has been hard. Going to work has been hard. It is hard.


My skin is going through its whole body shed. I'm willing it to heal before my birthday next week.


This kind of soreness is not the most private soreness. My hands and wrists are red raw and peeling. I walk slower, move slower and smile less. My feet will shed their skin soon, and that is the worst - it's just so painful to walk on. I don't feel like my usual happy self. Things are piling up and I jut want to get them done. But I also just want to rest.

I will be ok soon. But soon can't come soon enough. I guess it's good that I am mentally strong, because this pain is enough to tear anyone apart.

Anyway, enough of being a misery guts. Today I'm going to go to the cinema and do a little retail therapy. I'm going to try to write some articles. And I had some good news yesterday. I've been asked to help give a lecture at a university next year! So excited!

What's on for your day?

This post is for the Reverb12 project. I'm not sure if the reflections are supposed to be this negative, hah! I shall toughen up, princess;)

 

My live band bucket list

I don't have a list of things to do or see before I die. When I went overseas all I really wanted to do was to go to Momofuku and The Spotted Pig restaurants in New York City, and walk across Abbey Road in London. I did two out of three - the restaurants - and walked 'across Abbey Road' with the M&Ms at the M&M store in Piccadilly Circus London - underwhelming, despite Michelle's best intentions! I don't have a yearning to see the pyramids or the Louvre, or to climb a mountain or to meet anyone famous that I haven't already met (ok maybe Ryan Gosling and Cate Blanchett).

But I have a live band bucket list. I've had one for some time now. Admittedly it comprises mostly of Aussie rock bands. Bogan pub rock perhaps. I have already seen some of the bands on my live band bucket list, and I feel like I've accomplished something by seeing them live. Often at their concerts, I think to myself, I can't believe is is happening! I feel very lucky. I've seen lots of bands - live music is so accessible in Melbourne - and I cherish the memories of most of them. But these ones are my most coveted ones.

So here it is. My live band bucket list.

Cold Chisel - check! I saw them live on my birthday last year. It was like mass karaoke when Khe Sanh came on. I love a bit of bogan Aussie rock! Best birthday night ever!

Crowded House - check! I thought I'd never see them, but I've now seen them live around five times. Their shows are just magic. And I have a set list and a guitar pick from Neil Finn.

Paul Kelly - check! I saw him with Missy Higgins and Dan Kelly (below)at Moomba in 2006, at the Sound Relief concert at the MCG to raise money for Black Saturday - I loved it when he referred to the MCG in Leaps and Bounds - and also at a session at the Melbourne Writers Festival where he spoke about his song lyrics and sang three songs. Next year I'm seeing him live with Neil Finn. Ultimate bucket list check!

Hunters and Collectors - check! Again I saw them play at the MCG at Sound Relief. Loved being able to sing along to Throw Your Arms Around Me!

 

INXS - check! Thank goodness I saw them before they called it off recently! I was so I pressed with them, despite the critics and the absence of Michael Hutchence.

You Am I - not yet. I've almost seen them, as a friend knows the band, and our names were on the door, however when we got there, our names were no longer there. Each time Tim Rogers has played a solo show here, I've either not been here or had something else on. However, I did see him sing a song with Bob Evans in 2009, see below. You Am I were meant to support Cold Chisel last year - I was so excited about this prospect! Louis and I arrive at the show early, especially to see them, and they weren't playing. So sad!

Simon and Garfunkle - not yet. Last time they were touring, their tickets were ridiculously high, and I just couldn't afford it. I grew up listening to them, my parents are big fans. Here's hoping I can afford to see them next time they are both here (or even just Paul Simon).

Fleetwood Mac - not yet. My parents are also huge fans of Fleetwood Mac, I know all their songs and I am hanging out to see them soon. I saw the Melbourne Writers Festival Liner Notes performance of Rumours in 2010 - loved it and laughed hard! Next time they're touring, I'll go, no matter the cost or line up in the band. I think it'd be a really nice thing to do with my Dad.

Who is on your live band bucket list?

Edit: the lovely Eden commented below, asking if I've seen U2. Yes! And they were a bucket list band who I forgot to include! I became a fan in the late 90s on hearing Achtung! Baby. And I would listen to them in my bedroom as I did my year 12 art project. I am pleased to say I've seen them three times - twice in 2006 and once in 2010. Another band ticket off the list! Thanks for the reminder Eden!

No Limits returns Monday Night! You'll see me and my friends on TV.

 

Australia's only disability focused television show No Limits is returning to Melbourne TV on Monday 3 December (and each Monday at the same time for 11 more episodes)! Tune in to Channel 31/44 digital at 6.30 pm to watch our special International Day of People with Disability themed show.


The episodes should be able to be viewed online at c31.org.au after they air on TV.

I've been involved in filming a few episodes of No Limits over the past few months. Due to my overseas trip and the Other Film Festival, I couldn't be at every shoot, but I think I will feature in four episodes. I'm so proud of working on this show - we have covered important issues, showed that we can have a laugh at disability, and great friendships have formed. It gives people with disabilities voice in the media, a voice that's lacking. And it allows for collaboration and for the cast and crew to tell our stories and to share those within the disability community with a wide audience. While the actual filming is an educational experience for all of us, I really enjoy the social aspect of working on No Limits - getting to know the cast and crew, doing the safety dance, going out for post filming drinks and hanging out on non filming days. I've met some awesome people.


Grit Media, the organisation that produces No Limits, won a Yooralla Media Award for a sketch they created. The sketch is called Condescending Tool and is a parody on an advert created by the Cerebral Palsy Alliance.

Naomi Chainey and Phineas Meere, the brains behind the Condescending Tool, accepted the award on behalf of Grit Media at the National Press Club in Canberra.

Click here to watch the winning video. Check out Phin's interview on RRR here.

I hope you'll tune in on Monday nights.

Note: no this isn't a sponsored post. But of course I'm gonna promote the heck out of No Limits, it's the show that's given me a chance to be on TV! And I thought a red person would never be on TV unless it was exploitative and sensationalist....

 

 

Is art really art if it's temporary?

I've been hanging around brick walls lately. Laneways and doorways. I am always on the lookout as I walk through the streets of Melbourne. I'm on the lookout for temporary art. Street art. I think it's wonderful. I love that someone has taken the time to give their art freely to the community. To place the trust in us that we will notice it and appreciate their paintings and pastings as if it was art in a gallery. And knowing and accepting that it is (most likely) temporary art - one day to be worn down by the weather or torn down or painted over by people. The application of their art seems a great sacrifice. They just give it to the world and lose all control of its preservation. Of course, the artist most likely has an original design they can reproduce, but the place their art is situated is so very temporary.

I've been taking photos of street art when I see it. To keep it somewhere I guess. To treasure it. To remember the way it made me smile as I wandered through the concrete jungle, or drove around to find a park, just to get a better look. It is so easy with a mobile phone camera too. In late 2010 I came across Urban Cake Lady in a dingy lane way near my old work building. I just loved the vibrancy and fairytale-like pictures, and from then, I vowed to keep looking for more beauties like this.

My blogging mate Tash also takes photos of street art - she has quite the collection from overseas. She finds street art great inspiration for blog posts, and writes that bloggers must always be alert. Nicole loves street art too, and she has kindly referenced some of the street artists in my previous posts where I've featured street art photos.


I saw these on Friday night, on my way to Bob Evans. The art caught my eye as I drove down Lygon Street North Carlton, and on this ocassion I found a park so I could take a photo. I loved the way the shadows formed as the sun was setting. The photo was taken around 7.50pm.

This red haired beauty is on a housefront, she's sleeping on a map, dreaming of the places she'll go.

Next to the main picture is a young girl, pig-tailed and wearing a skivvy. She's also on a map, I wonder what she'll be when she grows up?

These pieces were created by Klara, visit her site to see more of her work.

As I walked up the stairs of the Bella Union, this was on the wall. Not so much street art, but it had a similar sentiment. The words made me a little sad, thinking about that boy. Will I ever find another you? Do I really want another you? I'm not sure who it's by, if anyone knows, please let me know.

Lastly I saw this yarn bombing at the Baptist church on Sydney Road in Brunswick a couple of weeks ago. The trees and posts at the church have been yarn bombed as a tribute to Jill Meagher for what would have been her 30th birthday.

I love the cheeriness it brings to the tree. The flowers are as bright and as beautiful as Jill's smile. It's a lovely gesture by Yarn Corner.

So is it art if it's temporary? I think it is. I get as much pleasure looking at street art as I do in the galleries. I like how modern, and dare I say, guerilla-like it is. I also think it's open to such a wide audience. Street art makes us slow down and look. It gives us a bit of incidental culture. It brightens up concrete. It's a fleeting gift.

Do you look out for street art? Where are some good places to look?

 

 

 

 

 

My grandparents' last trip. Around the world, twice. Once for free.

You may remember earlier this year, my grandfather, Poppy, passed away aged 91. My grandmother, Nanny, passed away in September 2008, she was 86. They had been married for 66 years - they wed in 1941, in the middle of World War Two.

Their wedding photo is above. Isn't it beautiful? The simplicity. The formality of the army uniform. The tiny posy my Nanny held. And the strength of the way they held each other's hand. Their love looked urgent. Can you imagine spending almost your whole life together - participating in a world war, raising two children and being a grandparent and great grandparent to five more children, moving countries and seeing so much change? They did. I wish I knew more about the change they've seen, I wish I'd listened more.

Sadly, they lived without each other for almost four years after Nanny died. Poppy didn't speak of Nanny much after her death, but when he did, he spoke of her quietly, and with affection. He chose one of his own poems to print on the bookmark for her funeral. The poem, titled This Is Ours, symbolises the partnership he and Nanny had, and how she would be forever remembered after her death. Reading his poetry is again an insight into a man I didn't know. The last stanza reads:

"Never believe that when

You die, you will forever

Die, for when you are

Gone from this Earth to

The darkest earth, one

Of the night's stars

Shining with brilliance

And lasting forever"

~ NE Findlay, 1970

Three months ago my Dad picked up my grandparents' ashes from the funeral home. Four years on and they're together again. Dad posted the ashes by seamail back to England, their homeland. My Aunty will collect them at the other end.

When I went home for Poppy's funeral, I found it incomprehensible that my grandparents lived so long and had experienced lot in their lives, yet the amount of possessions they had only filled my parents' spare bedroom. Some suitcases, a lot of filing boxes filled with history of military service by my grandparents, great grandfather and great great grandfather, Poppy's poetry and Nanny's photo albums, and tins filled with precious mementoes - my Nanny's jewellery, too good for her to wear each day, a pen from Buckingham Palace and war medals from three wars. And now them, strength in unity, as tight as that hand hold in their wedding photo, weigh a mere three kilos, albeit in a plastic container. It's hard to believe that two lives over 90 years can amount to such little stuff.

Last week the ashes were returned to my Dad. They'd been to Amsterdam on a boat, and back to Australia again. They didn't make it to England. My grandparents moved to Australia in 1987 for the warm sunny weather. I joked to my parents they realised the weather in England was perpetually gloomy and so they wanted to rest in Australia.

Dad went to the mail centre to talk to Australia Post about the returned ashes. He said his parents needed to get back home after all these years. Australia Post didn't charge Dad for the second journey. Nanny and Poppy would be chuffed at a free trip! Free! They're now on an aeroplane, express to England. Home to rest.

My grandparents lived a frugal life. But they saved enough to go on a holiday almost every year. Here in Australia they would go to Mount Beauty, enjoying the countryside and the sunshine and the company of their hosts and other aged people. I think they travelled overseas from England to Europe a little too. At my Poppy's funeral, I held my Dad's hand and saw his eyes well up as the celebrant talked about how my grandparents worked hard to afford my Dad and his sister a holiday to Scarborough each year when they were young. I imagined the family by the sepia-toned seaside (I had only ever seen sepia photos), children with buckets and spades, and parents sunning themselves, calling it a day with treats of icecream and bottles (or "bockles, as my Dad pronounces it!) of lemonade. I think they were happy times.

My grandparents will reach England in around seven days, their final trip to their favourite holiday destination, Scarborough. I imagine they'll be arguing the whole flight, like they always have done, Nanny nagging at Poppy to move his cup away from the edge of the table, and Poppy saying "shutup Joan", in his quick tongued midland accent. They'll be wearing their best for the trip, they always got dressed up to go out, Poppy even wore a tie to the shops. Nanny will be writing letters home - to her two homes - England and Australia, and she'll be scoffing a second helping of dessert, just like me. As they arrive in England, Nanny will do the Royal Wave for pomp and ceremony, like she did to punctuate many 20 minute car journeys. My Aunty will collect them from Telford, and she'll scatter them in Scarborough someday.

I do hope they'll still be holding each other's hand tightly until they reach the sea.

 

Pandan fruit salad, and gifts from House.

It's nice to be back in the kitchen cooking yummy food. I've been flicking through SBS Feast Magazine, bookmarking things I want to cook now and at Christmas.

Yesterday I cooked prepared a yummy dessert that involved an exotic ingredient - pandan leaf - which I bought from my local Asian supermarket. I got a big bag of it, frozen, for 1.50. I'll use the rest to bake some chicken in. Pandan leaf comes from a south east Asian tropical plant. It has a sweet vanilla flavour, and can give food a green tint.

The dessert was a fruit salad with pandan syrup. I didn't follow the recipe to a tee, instead I used the fruit I had on hand. Half a punnet of strawberries, a handful of blueberries, a mango, some pineapple and half a tin of lychees

The pandan syrup involved four pandan leaves, some raw sugar (I used two icecream scoops but the recipe called for 400 grams of palm sugar), around 500 ml of water and half an icecream scoop of ginger (from a jar - I was a bit lazy). I boiled this up on the stove until it was reduced and slightly thick. And when cool, I poured it over the fruit.

I served it with Greek yoghurt. It was so yummy - the ginger made gave it a tingly and refreshing taste, and the pandan was delicate. I think the salad would be nice with mint leaves, and also the coconut flakes as the recipe suggests.

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So it seems a brand has finally discovered me and my blog! Recently I've made a new friend on Twitter, her name is Kat. She is really lovely and we have music and podcast tastes in common! During our chats, she's come to know that I am a cooking and food lover, and it turns out she is a manager at the kitchenware store House.

Kat was lovely enough to send me two parcels of kitchen gadgets - the first featuring a machine to make squiggly apples and potatoes (must read manual!), a Luke Ngyuen ginger grater, a microplane grater (great for lemon zesting!), some mini tongs, chopsticks and a silicone icecream scoop (which I use to get flour out of the container), some mini terrine rings, and silicone egg poachers (which I plan to use next weekend for poached eggs and smoked salmon). I'm so lucky!

The next parcel contained some Christmas themed stuff - cookie cutters, a pudding steamer, a pretty teapot and cup (which, I hope if Kat doesn't mind, I'll put under the Christmas giving tree with some other gifts that I have bought), two pretty bowls (great for dessert), two postcard style glass serving plates, some pastry tins, two glasses and a Baccarat mini saucepan (which I used for the pandan syrup). Again I'm so lucky!

Thanks Kat and House for sending me these lovely gifts, and for seeing the value in my blog. They will help me be a bit more adventuous in the kitchen, especially with baking - I want to use the baking tins and pudding steamer at Christmas. Thank you so much.

Let's count all the ways. "Are you sunburnt?"

As summer approaches, and particularly in the heat of the season, the questions and comments (and stares and laughs) about my sunburn rise like the mercury. Sometimes in the winter, I get asked if I have been to the snow. Yes, for a few hours back in 1993, when I spent more time in the gift shop than on the snow fields. But the reactions are definitely more prevalent in the hotter months. Summer starts next week. I'm getting ready for the onslaught of questions. They don't upset me, unless someone is incredibly rude. And I have come to accept the questions will be asked due to looking so different.

It's like people just develop a condition where they say whatever they're thinking. Their thought bubbles become speech bubbles. Blunder bubbles. Clumsy, presumptious and often unapologetic.

While these questions may be considered to be out of curiosity and concern, and if children ask the questions, it does help their education around diversity when I provide a simplified answer, most of the time it just gets tiring. I just want to get on with my day. And I wonder, why ask? How's knowing what's "happened" to me going make a difference to someone's day?

There are a few ways that people ask or tell me I'm sunburnt. I answer on autopilot. "No I was born like this", which usually brings a sigh of relief and a "thank god you're not sunburnt" as though my day to day dealings with this condition and the stupid questions people ask is far easier than temporary sunburn.

Usually it's just an "have you been sunburnt?". Straightforward. Many times after I've told them its not sunburn, they go on a bit more about how their relative/friend/colleague's boyfriend's rabbit has had sunburn "this bad" and so they thought their question was justifiable. Um no.

I get asked "what happened?". I fell into a bucket of red paint. That's what.

Sometimes it's "Shit/Fuck! You're sunburnt." Shit/fuck! Keep your thoughts to yourself.

Sometimes it's a snigger or a point and laugh. Other times it's a "look over there" through gritted teeth and a nod in my direction between friends. I can see you.

When faced with drunk or drugged people asking if I am sunburnt, particularly at music festivals or pubs, it can be hard to reason with them, so I end up just walking away. When I last went to the Big Day Out, the security were so angry that I had been irresponsible in the sun that it was difficult to enjoy myself.

In New York I got a bit of a panic stricken "Oh God, oh God", part concern, part over reaction.

There's the assumption that I've been so stupid to fall asleep in the sun. When I go to the beach, which is rarely, I'm covered up like I was in the picture above. I even wore stockings and thongs there!

I get asked if I've been burnt a lot too.

My parents get asked about my appearance as though I can't speak for myself.

Sometimes people refer to my "condition" while waving their hands around their face, as if to emulate the inflammation. There's no need for wild gestures.

Parents turn their child's head away from staring at me, telling them that I have been sunburnt. I would rather they stare and I'll answer for myself.

And I get asked whether I've had microdermabrasion or laser surgery - and sometimes I wonder whether I should just say yes, as an advocate of those two procedures?!

People wonder whether I'm wearing some sort of face paint or costume make up. I guess if anyone would ever want to impersonate me - red face style - all they'd need is a lot of red lipstick, applied liberally.

The statement I hate the most is "someone's been sunburnt". I'm spoken about in third person. And if I had a better comeback, I'd look around and say "Who?!"

While I can laugh at these questions and I accept they're a part of my life I just have to deal with, they do get tiring. And often my friends notice other people's reactions more than I do. Every day I have to justify my appearance. There ain't no privacy or personal space.

One day I'd like to walk around commenting on their appearances too. I wonder how it'd feel to make these big blunders? Would it still be on my mind a day after I said them to someone? "Did you eat too much junk food?" "You should have looked in the mirror before you walked outside." "Your fake tan is a bit too Oompa Loompa." Or "Don't you think those clothes are a bit tight for you?" Dare me to.

And I have a genuine question - who else has their appearance commented on/questioned on a regular basis?

 

Bob Evans and Thelma Plum at the Bella Union

I had two goals this week. To get lots of rest post hospital and to go to Bob Evans live at the Bella Union (at the Trades Hall in Lygon Street Carlton) on Friday night. The last time he was at the Bella Union, I was on a plane from England to America. I achieved both of these things - rested and went to his show, and this morning, though tired, I'm happy. Music truly is good for the soul.

Note - I may be inconsistent with referring to Bob as Kevin in this post. Bob Evans and Kevin Mitchell are the same person, yeah.

The Bella Union is the perfect venue for a gig - it's intimate, drinks are cheap, and there are tables and chairs, plus armchairs and couches. I've often thought of taking my own chair (one of those walking sticks with a fold out seat would be perfect) to a stand up gig, and so I am thankful for any venue with a chair that is close to the stage - the Bella Union definitely met my needs! I went on my own (like I do for most gigs) and sat next to a nice couple who are also into a lot of Aussie music. I also met a blog reader (hi Jackie!) and a dermatologist who saw me speak at the hospital last month.

The gig was opened by young Brisbane singer Thelma Plum and her guitarist Andrew, who has no surname. I adored her from her first song. Thelma Plum - how could I have missed her? Methinks I need to listen to more Triple J (she was a J Award finalist) - she is wonderful! I think she's the next big thing.

Her voice moves between angelic and ocker, her strine sounding a little Missy Higgins. Her clothes echoed this - she wore a pretty white dress paired with Blundstone workboots. She is strikingly beautiful. And very tall. I loved everything about her, and look forward to her upcoming EP - she told me it'd be out soon. You can download her songs via Triple J Unearthed.

Bob Evans, as I expected, was wonderful. He played a few songs from his upcoming album Familiar Stranger (due out in March 2013) including a heartfelt song dedicated to his daughter called Wonderful You (which, he said, is something you don't do in the rock and roll industry, but "fuck that"). My favourites were Hand Me Downs, Someone So Much, Waiting Room, Sadness and Whisky, Wonderful You, Don't You Think it's Time and Nowhere Without You.

 

Bob Evans' music makes me nostalgic - I think back to when I first heard him on Triple J, six years ago when I moved back to Albury to get my life back on track, and I am so thankful for that time, not only because I discovered his music. I also think about my little old car (it was 27) deteriorating, and as he sang Ode to My Car, I remembered how I played that song on its trip to the wrecking yard. He says it's a silly song ("not a metaphor for a relationship like some think, it's actually about a car") but I think many people can relate to their old car being at the end of its life.

The banter with the audience is part of the charm of his shows (I do hope that if he ever takes a break from music, he will have his very own radio show, because he's very funny and a good talker). Initially he commented on a few occasions about how quiet we were, adding that it means the night is all about him. A lot of the banter was very funny, in a self deprecating way. I like a musician who's not afraid to take the piss out of himself. He told us how his first album has sold as many units in 10 years to give it copper status "you never hear about copper albums", he said. He also introduced The Power Of Speech as a bossonova song, "the sexiest type of music, next to heavy metal", and talked a little of his "lack of prowess" with females when he was a teen - "I know, it's hard to believe when you look at me now", he said, pointing to himself. He took requests (but only of the songs he'd rehearsed), and invited a guy (Jesse from Warnambool) on stage to play the harmonica during Turn. He was surprised when Jesse more prepared than him, and did a great job on the harmonica. He also threw me out a hello when he spotted me while reaching for his wine.

There were a few technical glitches, and despite jokes about not being a professional musical, Bob Evans handled these moments with excellent improvisation and humour. In Hand Me Downs, his guitar lost power twice - the cord fell out. He realised things weren't working because he hadn't turned his guitar lights on. And then, cutting short a beautiful true acoustic rendition of Don't You Think it's Time (where he got off stage and sang amongst the audience), a fire alarm sounded. He got back on stage, found the key of the fire alarm on his harmonica ("it's G") and then mimicked the sound. I think the highlight of the show was The Fire Alarm song - the made up on the spot lyrics punctuated with choruses of fire alarm mimicking - absolutely exclusive to this show! It was very funny. A video is here.

After the show, Kevin met with fans, signing CDs (each audience member got a free Double Life CD) and teatowels, and posed for photos. The time spent with fans, plus regularly thanking us for spending our money and watching him play ("it always blows my mind that people watch me play", he said, later adding "Missy Higgins is also playing tonight, you may have enough time to catch the end of her show") indicates how much he enjoys playing music and values his fans. He was absolutely lovely. He gave me a hug (I'm still quite sore and I appreciate him being very gentle) and asked whether I'm feeling better, and hoped the couch was ok for me. I thanked him for the interview, and apologised for the questions being potentially too personal - he said he didn't mind answering them for someone he knows.

Thank you for a wonderful show Bob/Kevin! Can't wait for more new songs.

 

Flight.

My hospital room window overlooked the city skyline. It was a mix of wide sky, sky scrapers and construction sites. The sky was often blue, and once it blushed pink at sunset. The top of Eureka Tower shone like a Wonka Golden Ticket, particularly bright when it was cloudy. And the cranes were a sign of things happening - both a tool in a construction site, and somewhere for Southern Cross flags to hang and flap mid air.

I couldn't see much life from the ninth floor. Life (and death) was happening outside, but I could only see it on my phone. I kept my blind open just in case I might see something outside. That and I was too short to reach the blind cord and so I had to stand on my suitcase to reach it. I saw a lone star one night, it pieced the navy sky. It was more inspiring than the beige walls, hand sanitiser and a syringe disposal unit that I looked at all day.

Opposite my window was a helipad for the air ambulance to land. During my stay, the air ambulance came four times. Three times on Friday night and once on Saturday. I felt bad that the arrival of the air ambulance was like a live display in my very own Christmas window. But I looked (and took that one photograph) anyway, in awe at the enormity of the operation. The technology. The fragility. How lucky we are to have this medical skill and presence. The responsibility that comes with the occupation. The severity of these patients' conditions, which of course brings perspective. And the speed and potential distance. Amazing.

The air ambulance hovered above the hospital for a long time, so you know it's going to arrive. It rumbled loudly, landing with precious cargo and met by medical professionals on the helipad. Once it landed, it was shielded by the hospital building. Some privacy. I couldn't see the air ambulance anymore. But I had hope. I hoped the patients inside the air ambulance were ok, that they had loved ones to support them. And if they weren't ok, I hoped the air ambulance was collecting or delivering organs to give new life.

 

My local.

I love my suburb. I've lived here for seven years now, and when I grow up can afford to buy my own home, this is where I want to be. In a little renovated period house with a rose garden. Or even in my current unit, if it was modernised. It's close to the city by car and public transport, relatively safe (despite its bad reputation from Underbelly the TV show and Underbelly in real life), and most things that I need can be accessed in the suburb itself or very close by. Neighbouring suburbs are very multicultural - I have lots of great eateries around.

It doesn't wear the hipster glasses of Brunswick or Fitzroy, yet it's got a cool edge to it. I think it's an up and commer.

Along the shopping strip I frequent, the shopkeepers know me by name. I buy from the green grocer, butcher, chemist, newsagent, delis and little supermarket. If I need something from a major supermarket, it's a two minute car trip away. It's friendly.

And the cafes are good too. There is a great deli that does home style Italian food, one that's just been revived that features some Mexican inspired food, and a few that advertise good coffee (I can't vouch given I don't drink coffee). Yesterday I took a walk and got some sun, picked up a magazine and had breakfast. A breakfast featuring all the good fats. Rye toast with mashed avocado, asparagus, salmon and scrambled eggs. They were so generous with their salmon serving too! Yum!

Today while picking up the newspaper and a chicken and salad, I saw that a bakery/cupcake shop has opened. It is called Mister Nice Guys and is decorated 1950s style - including the coiffed hairstyle of the barista. Isn't it pretty? I want to take more photos one day, but today there were a lot of customers there. It's got some kitsch retro accessories which I love!

There are a range of cupcakes in two sizes - I only had a very quick look and saw peanut butter, and then was won over by this one, a French toast cupcake.

The icing was delicious (and I'm not a huge icing fan) - it was maple syrup flavoured. I couldn't pick what the cake tasted like - I would say cinnamony-custardy, like, well, French toast. The barista said I had picked the best flavour.

There is also not much street art in my suburb. It's mostly ugly graffiti on the train station pedestrian underpass. When I saw this beautiful mural painted on the wall of a chicken shop, I smiled.

The brick wall has been designed like a chicken house, with a wooden house front, some window pot plants, and scenes of chickens doing human activities in a field. Free-range chickens indeed. Isn't it cute?

I complimented the owner of the shop on the mural and he said lots of kids and their parents love the chickens and stop to photograph it, just like I did.

Do you love your suburb? What's special about it?

 

 

 

 

Renewal

On Sunday I wrote about how much pain my skin was in while in hospital (and throughout the previous two weeks). My legs were the main source of my pain - they were swollen, inflamed, hot, weepy, suffering abrasions and scaly. I have heard of combination skin, but my body takes it to the extreme!

I am out of hospital now, at home, and not taking any painkillers or antibiotics, not using any steroid cream. My body just has to do its thing unaided. And it feels great.

I wrote on Facebook last night: "It's so nice to be home. It's so nice to have pain-free skin".

When I was in pain, I felt very aware of my skin. The thuds, prickles, throbs and heat. Now it's not sore, it's like I can't feel anything. There is no pressure when I stand or walk and no irritation from clothes or blankets. There has been minimal overnight scaling, and my legs don't feel dry. I feel more agile and have more energy.

It's like I have got someone else's skin. Pain free, smoother and paler. I could be the poster girl for an exfoliation product.

Is this what it feels like to have normal skin? I guess the healing and rest has meant my skin has renewed itself so well, and right now, it has no memory of pain.

-

This was the only personality that I could see in the hospital. A series of origami butterflies on the reception wall of the transit lounge. I was so happy to see it, I asked the staff if I could take a photo. Most of the other stuff that adorns the walls are signs about handwashing and patient trials and insipid paintings that ate probably purposefully selected to create as little mental stimulation as possible (ie to relax patients).

Butterflies are a symbol of growth and renewal. The shedding of the cocoon allows the caterpillar to flourish into something beautiful and free. A bit like the process my body experiences every day.

It's a new day and I can't wait to live it.

PS: I saw a brilliant article about online support received during hospitalisation - the virtual communities helped the writer connect with the outside world - similar to how I felt. It's written by Brigid Delaney, you can read it here.

 

 

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Christmas shopping straight out of hospital. It can be done.

I have missed shopping while in hospital. Really missed it. I got excited about purchasing a pop-up wedding card at the Hospital's post office yesterday. And I have been reading magazines while eating non-hospital food, lusting over fashion and Christmas present ideas.

So now I've arrived home and off the hard medications (to mitigate any silly endone-fueled purchasing decisions) I was keen to get into it. If my dermatologist, day job boss and Mum are reading this, DON'T WORRY, I am resting. Seriously.

I popped out down the road to buy some lamb chops, cheese and fruit (to celebrate my release!) and in my local little shopping strip, there is a funky boutique. It wouldn't hurt to go in, just for five minutes. Shopping is practically part of holistic therapy. Yes? YES! And so in five minutes, I bought two Christmas presents - one for my Mum and one for a dear friend.

I was gone from home for 20 minutes max. I got home, put my two new gifts away in my secret Christmas present bag (I have already bought two, plus the presents for the giving tree at work) and felt smug. Organised in November. This is saving me time and money! I climbed back into bed, got snugly on my new pillows (I have missed my bed and these pillows, and especially the doona!) and felt the need to shop some more. But my skin won't allow me to do more physical shopping today.

So I got googling. And purchased two more presents - both very unique, and at a good price. Which leaves me money to buy more goodies for my loved ones. A few friends asked me where I suggest buying presents from. So of course I decided to blog about it. And here is my list. Note, this definitely is not a sponsored post. It's just a list of shops I recommend. As I've gotten older, and perhaps it's because I'm earning a (small) wage out of creating (writing), I have found its so much nicer (and less stressful) to purchase gifts from local, grassroots stores than trawl the mega malls. Presents are often so much more unique, and better quality. And you (mostly) know where your money is going.

iSubscribe: Last year I bought Mum a subscription to SBS Feast magazine and she LOVES it! It is good value, there is a big range of magazines, and the recipient gets a gift each month.

StickyGram: I saw a discount code for StickyGram on Twitter - you can turn your Instagram photos into magnets. And so I clickygrammed, and created a very unique Christmas present. Here's the discount code, for $2 off your first order: FRIENDEAUP. It's great for getting your photos off your phone and prettying up your room.

Hard to Find: this site sells all sorts of things, from cute jewellery to clothes to homewares. I am going to be browsing this site for a unique wedding present...

CurlyPops: my wonderful friend Camille is so talented and she's got lots of bright goodies for sale. Check out her cushions and glasses pouches to give to a girl who loves colour!

St Frock: another friend Sandradee owns Sydney bricks and mortar/online boutique St Frock, filled with lots of pretty dresses, jewellery and shoes - the lady in your life who loves to dress up would love something from here!

Red Phoenix Emporium: again, more friends of mine, sisters Willow and Lotus have designed a range of bright beaded jewellery, clothing and accessories - even some to fit baby fashionistas.

The Book Depository: I know this is a big commercial giant. But book shops are hard to find. And The Book Depository has cheap books and fast shipping. I bought one book for a Christmas present here, and two at Brunswick Bound if it makes you feel better.

Etsy: I LOVE ETSY! So much handmade goodness - jewellery, clothes, prints, everything!

I checked my mailbox and saw a little gift had arrived for me. I was reading one of my favourite blogs, Frocks and Frou Frou last payday and saw a necklace she wore that I had to have (again!). And so, even though it was gold and I am a silver girl, I bought it. Because I am a bit obsessed with moonstone at the moment. I love how it sparkles. The necklace was purchased from FriedaSophie on Esty (you can buy the same one here). Isn't it pretty? I love the way it sparkles all purpley and blue when it catches the light.



Here is FriedaSophie's photo for a better view!

It was a lovely welcome home from hospital gift today!

One present that I bought today is a big surprise and so I don't want to give the site away, but it involves some crafting once received.

I love present shopping! Especially when it's exciting and convenient like today's bedridden adventure :)

Tell me some of your favourite online shops.

 

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Healthcare activism - negotiation of care plans, holistic approaches and blogging as therapy.

Being in hospital, and even living with a chronic illness on a daily basis, can be quite disempowering. There is little privacy, schedules for treatment, tablets and observations, TV rental is ridiculously expensive, and you can't do the things that you're used to, like get up out of the house and visit a friend.

This hospital stay, I am quite low care. The nurses come to do observations, give me tablets every few hours and change my bedding twice a day, but I shower myself, apply my creams and move around as freely as I am able to - venturing to the shop for a newspaper or a snack, and heating my food up in the microwave. I am using social media to stay abreast of news and to chat to friends. It's been the source of a virtual hug.

Last night I took part in a Twitter chat for healthcare and social media enthusiasts - known as Health Care and Social Media Australia and New Zealand (HCSMANZ). It happens each Sunday night at 9.00 pm Australian EDST, and you can follow along using the hashtag #hcsmanz (and you don't even need to sign up to Twitter to follow the chat). I like this chat because it's fast, interesting and relevant, and I can 'meet' like minded people (including doctors, patients, medical students and marketers) from across the world. View last night's transcript here.

One of the first questions put out by the chat moderator was "what is healthcare activism?". While it is a number of things - protesting, creating changes, health professional advocacy and so on, I jumped in from a current patient perspective.

I said "I am in hospital now. Healthcare activism is being able to negotiate my treatment, telling my medical staff what I need. I know my skin."

From my arrival at hospital, the dermatologists have encouraged me to lead the way for my treatment. Up front I said no blood tests or canulas, unless infection worsens. This means infection will not spread to my arms or hands (where the needle wound site is). The nurses on this ward are used to doing wet dressings for skin conditions, but they haven't done them the way I have been used to. And so when the dressings and topical creams did not reduce the swelling, inflammation and pain, and the wetness of them didn't allow me to sleep comfortably, I suggested we change how things are done - no dressings but a stronger topical cream. And lots of bed rest. This has meant that I can lie here comfortably and dry, knowing that the stronger creams are doing their job. And my legs are far less swollen, hot and inflamed. It felt good to negotiate, and be listened to. This collaborative approach between patient and doctor enables empowerment of the patient.

Secondly, I believe health activism is a holistic approach. My dermatologist said that my healing is as much about rest and good food as the medication and topical treatment. The feeling of not having to do anything but lie in bed and read, sleep, eat, shower and repeat has made my body so much calmer. If I was at home, I'd be having the tablets and applying the creams, but I'd also be doing the cooking (or calling for takeaway), cleaning up after myself, and finding things to do. Yes it's boring in here, and I have not read or written as much as I had hoped to, but it's restful. Which is what I need.

And finally, my other contribution to the "what is healthcare activism?" question was this:

"Healthcare activism has also been being able to swap a chat with a psychologist with blogging as therapy, and my doctor seeing the value".

Writing this blog, even really short entries on my phone, has meant I can clarify my thoughts, write out my pain and frustrations, and receive support from readers, Twitter friends and real life friends. It's certainly a worthwhile past time. Once I've written and published it, I can let those feelings go.

In my thesis (on blogging and chronic illness), I wrote:

"...I can relate to Tan (2008) and McKosker (2008) in using blogs as self therapy. While I have not sought out medical treatment through my blog, I have expressed frustration, described pain and recalled socially challenging experiences. As mentioned, illness can be lonely, and putting my thoughts out there for the world to read is a way of letting go of them."

It is valuable that illness and healthcare is not just confined within a hospital or traditional medical setting. While I don't use the Internet or my blog to get (or provide) medical advice, I do use it for friendship and emotional support (and am well aware where I should seek medical and psychological support).

I also wrote:

"Parr (2002, p 77) also outlines the trend that “health and illness are now not confined to the clinical locations of the hospital or the GP surgery, or to the relationships between doctors and patients, but are dispersed throughout various social and commercial arenas” (Nettleton and Bunton, 1995 in Parr, H 2002)."

This new trend, acknowledged by academics and medical staff, means that patients' voices are heard and valued. I am so grateful that my dermatology team does listen to and value my voice, so I can help shape the treatment that works best for me. I feel like I am a patient, speaker, advocate and activist.

How are you a healthcare activist?

 

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Virtual hug

I woke up this morning feeling revitalised.

My pain has subsided a great deal (but still there) and I felt happier. I no longer have the uncomfortable, squelchy wet dressings on, and this allowed me to get a full night's sleep, even in a squeaky single rubbery bed.

I put this revitalisation down to a virtual hug. The Internet kept me company. I wrote my frustrations out, and you hugged me. I had people to talk to, and they empathised, made me laugh and made me feel loved. I couldn't keep up with so much social media! I received offers of greasy burger deliveries via email, text messages, Facebook chats and blog comments. I had lots of lovely tweets - from bloggers, Tweeps across the country, real life friends, and celebrities I admire. Excuse me while I name drop (and see photos below). Charlotte Dawson envied my hospital food (a rare compliment to the hospital kitchen - which I've passed on via twitter!). Bob Evans said I'd better be well enough for his show on Friday and that he'll save me a comfy seat there. And Chrissie Swan asked me how I am and said she has been following my blog! READS MY BLOG! I read her column every week, and listen to her radio show. I feel very loved and truly thank everyone who's taken the time to check in how I am.

The Internet can be littered with mean spirited people. It can bring us down sometimes, especially by people projecting their own unhappiness and insecurities onto us. Like a comment I received here yesterday (thank you for all the support I got after *that* comment). But gosh it can lift us up. I am so grateful for the friends I have made online, and for the internet bringing my real life friends closer. And I am so grateful that I have an outlet for the days that I can't get outside and interact with people in real life. Blogging truly is therapy. I shall report this back to my doctor tomorrow.