31 July 2013

Introducing Neil from Bushwalking Blog: a BUPA Health Influencer award winner

The winners of the BUPA Health Influencer blog awards are fantastic people, and I am proud to be in their company. I want to introduce you to them each week, and I encourage you to read their blogs. They've all made a positive difference in their communities and also in their own lives.

Today's post features Neil Fahey from Bushwalking Blog. Neil provides all sorts of tips about bushwalking. He won the Healthy Lifestyle category. I first met Neil at the BUPA blog awards but had chatted to him on Twitter before that. Aside from being happy he is a winner, I'm also happy he's making my friend Lori so very happy too :) Meet Neil!

"Bushwalking Blog started when I booked a hike on the Inca Trail in mid-2009, and realised I was completely unprepared. I started hiking regularly and found myself visiting some amazingly beautiful places, which I thought it would have been a shame not to keep a record of. It grew from there and now features everything from how-tos and trip reports, to news, outdoors photography, safety tips, and gear reviews.

My aim with Bushwalking Blog is to make hiking more accessible, and inspire others to get off the couch and enjoy the many benefits of a walk in nature. I do this by providing readers with helpful tips and advice but most importantly, I provide ideas for places to hike that can easily be found by location, length, or difficulty.

Writing is one of my favourite pastimes. I feel a certain satisfaction every time I hit the Publish button on a blog post. It's one of the things I need in my life in order to be happy.

Aside from that, blogging has enabled me to gain more exposure for my skills in writing, editing, social media, and web design and development, which has led to quite a bit of freelance work. I'm currently looking to get out of I.T. day-job and work full-time in the online communications field, and I believe blogging has ultimately provided me with the experience and skills to do so.


It's amazing just to be officially recognised for something that I've poured my heart and soul into for the last 5 years of my life. I'm hoping that it will help in building Bushwalking Blog's audience and, ultimately, lead to more people taking up hiking as a hobby.

I'm continually trying to grow Bushwalking Blog and expand its reach, so one thing I'm planning is to start increasing the frequency of my posts. I have a few other blog-related projects in the works, but I can't be specific about those just yet.


I've got a few tips for new bloggers. Firstly, make sure you're passionate about your chosen subject. Blogging is bloody hard work, so you'll tire of it in no time if you're not passionate. Secondly, if you're sure that you're up for the challenge, don't sit around thinking and planning - just go for it. Write interesting blog posts that people will connect with, let your personality shine through, and find an audience by connecting with potential readers via social media. You'll need to be patient and determined."

You can follow Neil:

Blog: Bushwalkingblog.com.au

Facebook: facebook.com/BushwalkingBlog

Twitter: twitter.com/BushwalkingBlog


30 July 2013

Stuff I love - #2

It's been a while since I last did Stuff I Love. I had hoped to make this a regular habit, but there's been lots happening. Anyway, here are a few things I hope you love too. (Note - I didn't so much love doing this quick post - I was back reliving my uni days of HTML when an accidental swipe of the YouTube video meant that a heap of text was deleted and other text turned into HTML!)


I have fallen in love with Little Wolff - it's a blog full of parenting stories, house renovations and photography, and the thing that has kept me reading (44 pages of archives during my rest time last week!) is the beautiful writing about important issues. Lila covers refugees, gay marriage, domestic violence and examples she's setting for her children.

I especially love this recent piece on chicken soup for the soul - the act of love and kindness.

Appearance Diversity

My wonderfully talented big hearted friend Rick Guidotti has a feature in A Distinctive Style magazine this quarter.

He does such great work to promote the beauty in visible difference - I'm so glad we met.

You can read the magazine feature here.

Again, The Matter with Megan makes it into my list - she writes about what she learnt being a counsellor at a children's dermatology camp. It seems, like with my mentoring experience at the Children's Hospital, Megan was just as fulfilled as a counsellor as the campers were.

Also, I love Humans of New York on Facebook. It's a page that showcases beautiful photos of people on the streets of New York with a little accompanying story. There is such diversity in the stories! I saw this on Sunday night and smiled. I love this woman's attitude.

Get following Humans of New York on Facebook - it'll bring happiness into your Facebook feed.

Social enterprise

I've been brunching at a little cafe called Streat lately. I knew of the Streat coffee cart in Melbourne Central but didn't know it was a full scale cafe until Sandra told me. Streat is a social enterprise , employing and training homeless youth in hospitality. The food is amazing and I know my money is going to a good cause.


I have had the pork belly on Japanese pancake (top), pork feast (middle) and brioche French toast with peanuts, caramelised banana and chocolate sauce (bottom). So delicious.

It's such a great cafe - a cool interior, great prices (going to a good cause), some of the best brunch meals I've had in Melbourne and friendly service. Streat has a cookbook for sale - I will buy one next time I'm there.


I've been reading (and writing) a lot about resilience lately - more of my own work on this topic to come soon. I have been inspired by a seminar at my day job, an article by Michael Short, and also Ingrid Poulson who is a survivor of an unimaginable tragedy. I think the concept of resilience is really interesting - it's the ability to bounce back from a bad situation. People have an amazimg strength to prioritise problems, rise above adversity and find happiness in the darkest days. You can watch Ingrid's amazing TED talk here:



Cute animal pictures

Darcy the flying hedgehog

Oh the cuteness!

@darcytheflyinghedgehog - Hedgehog photography by Shota Tsukamoto.

You're welcome!


When I was in New York, spending time with Beth and Mrs Woog at the Metropolitan Musuem of Art, I really wanted to buy a ludicrously beautiful piece of jewellery from the gift shop. I measure a gallery or museum by the stock in their gift shop - and the MET rates pretty highly on my favourites list (also see the Victoria and Albert and National Gallery of Australia.). I didn't buy the jewellery though - I worried about my budget too much. About a month ago I stumbled across the MET gift shop in Melbourne! I know, right?! (It is in Australia on Collins but you can buy online too.) I was so excited! I wandered in and saw MY jewellery in the cabinet. It was still at full price, but I made a note to purchase it when I get my tax return. On Saturday Camille and I had a brief trip into the city with her gorgeous nephew. I told her about the MET gift shop, and she was as excited as I was! It's full of scarves and vases and lots of jewellery. MY jewellery was half price too! And reader, I bought this.

Faberge pansy bangle
Faberge pansy bangle

It's a Faberge pansy bangle. There is a little story in the box about how Faberge designed jewellery for the Romanov family during the Russian Revolution. I studied the Romanovs at school, so I was interested to read this history. Finally this bangle and I are reunited. And I love it! I am calling it a treat for the busiest, strangest, worst yet most successful month of the year.

That is the stuff I love. What are you loving lately?


29 July 2013

Ichthyosis Awareness: Tina's story - "The college discouraged me from being a doctor, stating that I being abnormal will not be able to do it. "

I promised to continue to share stories about personal journeys with Ichthyosis on my blog even though Ichthyosis Awareness Month is over. My blog is open to anyone affected by Ichthyosis to share their story - please contact me if you want to publish your story here.

Today Tina shares her story. She has Lamellar Ichthyosis and lives in India. When I received her story, I cried. She and her mother have been through so many struggles in her life, and the difficulties she's had with people's reactions, medical care and costs have made me feel extremely lucky for the healthcare we are entitled to in Australia, as well as a rather high level of equality tolerance of disability here compared to what Tina has experienced in India. That Tina has had her ambition and right to education stifled because of stigma saddens me so much.

I also wish there was some sort of partnership between the Australian (and specialist Western) hospitals and hospitals in countries such as India to offer education and support to doctors who aren't very informed about conditions like Ichthyosis.

I am very grateful for the online community that has afforded Tina some support after all these years. Finally she can feel a part of a community where people understand her condition.

Meet Tina, and keep a tissue handy. I thank Tina for being so courageous to share her story here, and I wish her and her amazing mother the very best. It's Tina's birthday today - happy birthday Tina!

EDIT: 24 September: Tina's mother passed away this week. I have set up a donation page to raise finds for a cooling vest and creams for her. Visit My Causes to donate. Here's hoping we can help ease the burden for Tina.

"I am Christina Raj, 37 years old from India. I was born a collodion caby. My Mother, a gynaecologist, took utmost care of me as a single parent. My father left my mom as I was born with a skin defect.

Mom had a son who was born 2 years earlier to me with Lamellar Icthyosis; The doctors who attended to her told her that she gave birth to a weird looking baby. They were not aware about the colloidal baby in those times in my place. My bother was kept in isolation in the hospital but after 5 days he developed pneumonia as he was exposed to cold and died. My mom was informed about his condition only after he passed away. My mom had to bear the taunts from her elder sibling that she gave birth to a monster. I was born 2 years later.

When I was born as a collodion baby, My mom instantly guessed that I was born with a genetic disorder. She was prepared this time and fought with the hospital authorities that I will not be kept in isolation but with her. She had no job and no support and was all struggling with her meager savings to take care of the hospital expenses as I was in a critical condition. I was swathed in bandages all over as I had a sore look and the blisters were real bad due to skin tightening. She said that even the corners of my mouth had to be cut to feed me as the skin was tight across. The eyelids were inverted and the hospital folks told that I was born without eyeballs. My mom had to gently pull the upper eye lid after a week. My mother as treated as an outcast , she was blamed that she gave birth to a child who was a monster look like coz of her sins, she was never a part of any functions or family celebrations and was always alone.

At the age of 5 all children started to go to school but I could not as the schools never wanted to give admission to a child who was terrible to look at, I don’t remember anyone carry me as a child, or speak kindly. I did not have friends as the mothers used to tell their children to keep away from my as I had a terrible disease and they would get affected. I had lots of problems as the skin used to scale all over from scalp on to my shoulders and arms and I had to hear those unsightly remarks My only friends were the stray cats and dogs and pigeon that I rescued when they were injured. I took solace in these animals, and as I grew up books and music and church was my entertainment. I used to dread going out because of the stares and the rude remarks. I was always and still considered an outcast by some. There are people who will not touch anything that I touch. They will not eat when I offer and will not like to offer food to me. Parents do not like me to hold their babies. In fact many used to say I have leprosy. I have friends a few now who are very supportive.

As the years went on, I became more and angrier at people’s reactions and became more shy and distant. I would hide because I knew I was different. Now I decided that every time someone stared, I would smile and wave and at times I would tell them if they folks at home did not teach them manners and that it was rude to stare.

Lamellar Icthyosis is unheard of in my part of the country and the dermatologists were not helpful at all. They are not aware of my condition and they had advised my mom to use Liquid paraffin or Vaseline after bath. This was a messy affair which made my clothes, my skin look so greasy and oily. Mom had a tough time with getting my clothes laundered. In summer the paraffin/white petroleum jelly used to increase my woes by adding to the body heating up and heat intolerance. Cooling vests are unheard of in my place. I remember when I used to have final exams that were held only in summer here was torturous for me. I had to carry a bottle of water and pour it all over me to keep me cool and prevent me from fainting due to heat stroke. Needless to say the kind of stares and explanations I had to go through was another ordeal. I have severe dry eyes that used to water constantly but now after I started taking Almonds, Acetretin and constant care by using Glycerin with a little white petroleum jelly has made my life a little better. I used to apply only vaseline for almost 34 yrs. When I met few people from ISG , they told me abot glycerine mixed with vaseline. I started using this and VOILA... It helped me 40%. My skin does not crack and bleed that much now.

I have one problem that has surfaced recently where my body swells twice the normal in a day soon after waking up because of overheating due to any physical activity, such as a basic one like brisk walking also. The doctors here are clueless as to why my body swells, I see my body bloating the moment I start eat or drink anything. Even a glass of water tends to swell my body.

I am often made fun of when I walk slowly. I have terrible problem walking with deep fissures on the heels and I tread cautiously and they are very painful and often bleed. I use my finger tips to type while working and people ridicule me even for this.

I wanted to become a doctor as my mother, but I could not as I have to go through the labs as an intern. The college discouraged me stating that I being abnormal will not be able to do it. I now work in a company. I always have to compete with the normal and people still tell that I am not normal so its difficult. I do not get any tax benefits and the tax deductions are huge. I have tried getting at least tax exemption, but Indian government says that my condition does not come under disability category. I am the only earning person and my 3/4 salary goes up in buying creams, vaseline, band aids, Acetretin, antibiotics, pain killers. The trip to the doctors is another money sponger. Every time i go to a different doctor, he is clueless about Ichthyosis. They write a battery of tests all over. I have to spend 2 hrs explaining about my condition in educating them further. This really leaves me frustrated.


My mother was my personal physician. She now is bed ridden as she was diagnosed with Vascular Dementia. I have to take care of her medical expenses as well now. My mom is 75 and retired. My mom has been diagnosed with Vascular Dementia and now she is almost in a vegetative state in bed, lying in the same position since 6 months. I already am the sole earning member in my house and in addition to my medical expenses that I spend on the creams, soaps, antibiotics, ointments, other medicines and the regular blood tests which the doctors write, I now have to take care of my Mom’s medical care. I do not have any kind of medical support. I could not admit my mom in a hospital as it will be expensive for me. I do not have any savings from my Mom as she even though being a Gynaecologist did mission work. My mom worked in a mission hospital on a meagre salary. She said she wanted to do something for the poor who cannot afford medical care. She worked in remote places, she was very kind and when some poor patients who traveled long distance for medical treatment but had no money for food, she gave food to them. She never could see any person go hungry. She always said “God will provide for us”, but we will have to share and help people. Now, when I asks the doctors to check on her they talk all commercial. My mom is almost brain dead; she has been lying in the supine position for last 6 months. I feed her water and liquid supplement with the help of a syringe. She has developed bed sores all over behind and it’s so painful that she groans in pain.

I put on adult diapers for her everyday in the morning after a through clean up with lots of antiseptic soap, followed by application of antibiotic cream so that the bed sores heal soon. The challenge is when one heals other surfaces. She has lost her co-ordination of movement of limbs and her arms are crossed over on her chest following a blood clot in the brain, she cries when I try to slowly release her hands. I will take care of her till her last breath. She has done so much for me and I owe it to her.

I am emotionally, mentally and physically worn out with my own challenges and now, I am sandwiched between, work, my mom and taking care of house."

For Ichthyosis and appearance diversity resources, click here.


26 July 2013

Not well. Fandom.

I'm not well. Everything has collided and now I have sorer-than-usual skin. The pain is hard to describe - it's throbbing and tiring, and wears at my emotional armour. I'll be ok soon - I always am. This month has definitely shown that stressful situations (and even excitement) can play havoc with the body's balance.

Yesterday I took myself to the hospital to get some antibiotics, a doctors certificate and just to have a chat to a professional, really. While I don't feel sad, I do feel overwhelmed by a lot of things, worried even, and I just needed to know that what I feel is valid and may be contributing to this period of soreness. I have today off work and plan on resting up over the weekend. Now, in addition to the prescription, I can work on resting my mind a little. I will try (right after that deadline I enjoy a cup of green tea and a quality magazine).

I am forever grateful to Australia's public hospital system. We are so lucky to get free taxpayer funded clinics, treatment and hospitalisation. While I don't much like the wait time, I acknowledge the wait time is necessary, and at the end of the wait time, I'm going to see a knowledgable, caring and friendly doctor or nurse who understands what I need to get and stay well.

I went to the dermatology clinic as a walk in patient, rather than having an appointment booked months in advance, and was seen to within half an hour. That beats sitting in emergency waiting for a dermatologist for five hours. (A skin infection never seems to be regarded as a true emergency...) After the dermatology clinic I was referred to the immunology clinic, where shit just got serious.

The immunology clinic appointment was a follow up to the trip to emergency last week. We talked about what happened when I ate seafood - that this was my first reaction after eating it my whole life. The dermatologists have always been concerned about food allergies and I've been lucky to go for so long with only having allergies to latex, pollen and codeine. So this potential allergy didn't really come as a surprise. I was prescribed an EpiPen, practiced how to use the trainer EpiPen, and given some forms for a blood test to test for seafood allergies. We also talked about possibly boosting my immune system with a blood product called Intragram (like Instagram, but not an app and there's no pretty filters. Actually it's not like Instagram at all. It's a transfusion in the arm.), and vaccines for chickenpox and herpes. Next time I visit the hospital I'll have that blood test and then see the immunologist again to discuss the allergy situation. Until then, I'll just avoid eating seafood. What's a foodie to do?! I'll be envious of all those seafood dinners on Instagram...

Two happier things:

Darren Hayes replied to my tweet!

Darren uses social media to do great things - speaking up about human rights injustices, especially around homophobia and discriminatory behaviour. I love that he uses his celebrity for positive influence. And I love that he won't remain silent despite receiving criticism. And nor will I. (Also, did you see he called me beautiful?! Did you see?!)

My Dad was in town for the Liverpool v Melbourne Victory match this week. I was SO excited that he could see the game - he hasn't seen his team play for 36 years.

That's him in Cape Town in 1977.

He was able to meet his friends from the UK - who he met at Liverpool matches back in the UK - while in Melbourne - he hadn't seen them for all those years either.

I saw this on the news and got a bit teary at the thought that Dad was in that crowd, singing You'll Never Walk Alone. Australia's his home now and it is wonderful he could experience that fandom again here.

I grew up with a very passionate Liverpool fan father. He still is - up at all hours watching the match, checking the LFC news on the Internet. When I was little, well before the Internet, and before we had SBS TV in our regional city even, he'd tune into the BBC sports show on the shortwave radio to keep up with the scores. There was a time he came to Melbourne with me for a hospital appointment and we had to change hotels because the one we'd booked into wasn't showing the Liverpool match!

I haven't ever watched a full game, but the chants are all so familiar to me. I knew all the words of You'll Never Walk Alone from a very early age, like it was a nursery rhyme.

Mum sent me that photo the other day - Dad's fandom was passed down to me - not in a sporty way but definitely through my passion for singer-songwriters.

There's something special about being a fan. It's the anticipation of their arrival. It's the passion of seeing your team or band or actor do what they do best. It's the camaraderie, the chanting, the cheering. It's that look you get from other fans - the feeling of sharing the same excitement. It's that intimate moment when your idol looks at you in the eye or sings you that song. It's knowing that your passion has a place in your heart for life. It's the most alive you'll ever feel.

That's it from me today. I'm resting. Probably sleeping as this post goes live.

Do you love fandom as much as I do?

Are your parents passionate fans and has their fandom been passed down to you?

Did you go to the football?

Has your favourite celebrity tweeted you?

Have you got an EpiPen? Does it hurt?

Are you following me on Facebook?


24 July 2013

Introducing Lee from Supercharged Food: a BUPA Health Influencer award winner.

The winners of the BUPA Health Influencer blog awards are fantastic people, and I am proud to be in their company. I want to introduce you to them each week, and I encourage you to read their blogs. They've all made a positive difference in their communities and also in their own lives.

My first featured blogger is Lee Holmes from Supercharged Food. She was the overall competition winner as well as winning the Healthy Eating category. I adore her blog header - beautiful graphic design - and I really want to make this blueberries and brown rice recipe. Meet Lee!

"Supercharged Food is a book and website which helps people make nutritious food choices; if you take a visit you'll find healthy recipes, a shopping list, meal planner, cooking tips and wellness information. I hope you come and take a look and try out some of the recipes!"

People visit Supercharged Food to discover new recipes which are nutritious and healing. They also can look through tips on how to get started and improve health from a cellular level. People can come and read in depth information about aspects of cooking and preparing healthy food such as juicing, dehydrating, what appliances and tools to use. There's a review section about many of the latest wellness products and a lot of people like to enter the monthly competitions to be in the running to win healthy prizes and nurturing gifts.

I see blogging as a creative outlet and to be able to inspire others is such a fantastic gift. It's fun to create new recipes and share them with others. I learn a lot from other bloggers too, and it's a wonderful network of people to be involved with, especially in the health and wellness arena. I've met so many inspiring people. Especially you Carly!

Bloggers aren't always immediately recognized for the work that they do so it's great to be able to be involved with BUPA who have created the awards to highlight and recognize the current influencers in the health space. Personally I was shocked to have won because there were so many blogs of a very high caliber not only my category but across all categories so it was very exciting to be selected as the overall winner and the winner of the healthy eating category.

My plans for my blog have always been to keep it real. I have an anti-strategy when it comes to my blog, because I work in marketing and social media and plan strategies all day long for other people I wanted my personal blog to be different. You won't find any behind the scenes publishing calendars or strategy documents :) I write when I feel like it and when I have content that I think will help either educate, inform or inspire others. I have a new recipe book for kids coming out next month and also another book called Eat Yourself Beautiful coming out at the end of the year through Murdoch books. It's all about anti-inflammatory foods and how to eat for certain auto-immune, digestive and inflammatory conditions. I'm also expanding my cooking classes and health coaching business.

My tips for new bloggers are: Be prepared for criticism. Write what you believe in. Network with other bloggers and mostly enjoy what you do."

You can follow Lee's work:

share: www.superchargedfood.com
like: www.facebook.com/superchargedfood
follow: www.twitter.com/LeeSupercharged
blog: supercharged1.wordpress.com
link: www.linkedin.com/in/leesupercharged
watch: www.youtube.com/leeholmes67


22 July 2013

On people chasing and just doing my thing.

(Picture of quote in latest issue of Renegade Collective)


Until recent years, I was a people chaser. I spent a lot of time wondering why people didn't want to hang out with me, and more time getting upset at this. While it may have been a case of them really not wanting to spend time with me, it was probably more that I was chasing the wrong type of people, just to have a connection with someone, I suppose. The people who don't belong in my life. Now I've stopped chasing, these people who didn't make time for me are no longer in my life. And I have a heap of great new people who are in my life - who belong here.

When I was 22-23, I would see a guy who wasn't really boyfriend material. For most of our relationship, he didn't work - just sat in his smoke-filled room playing computer games. His parents also chain-smoked, and so when I'd visit, I'd have terrible allergies. One night his Mum drove me to the chemist to get some Zyrtec. There was an irony in that she smoked the whole way to the chemist, with the car windows wound up. Achoo! This guy was unreliable - he'd constantly let me down, not attending my birthday party, not calling me in hospital, and it was always me doing the chasing. Phoning, texting, visiting. I just didn't speak up about this behaviour. And still I wanted to be with him. I guess he was cruelly kind, breaking up with me over the phone one night, saying "didn't I tell you I don't love you anymore?" so casually it was like he forgot to pick up some milk at the shop. He also added that he was only sleeping with me because he knew I loved him. Those words were sharp. He worked at an abattoir for a little while, so I guess he knew the quickest, gentlest way to kill an animal? I was devastated, for a little while, and then I realised what a good thing it was not having to worry about whether he was going to show up or not. And more importantly, whether he was going to treat me with respect.

I've had people in my life constantly show up late, leaving me waiting in excess of an hour (some citing the excuse "that's just who I am, I'm never on time"). Others would ALWAYS cancel, even when they've arranged a time that's suitable for them. As social media crept into our lives, I'd see that while they weren't able to make my birthday (many years in a row), they would be having such fun with their other friends. It's that showreel of envy, hey? I'd continue to chase, hoping that one day I'd be a priority. It takes strength to speak up about people not giving you their time. And when I have done, I've lost these people as friends. I'm ok with that. There are still a few people I want to spend time with but the friendship seems pretty one-sided, so I'm letting go.

I'm a big believer that respect equals people in your life being willing to give you their time - like time spent with you not a chore. This isn't a case of me feeling that I'm the most important person they should be spending their time with. I understand everyone is busy, and everyone has a lot of friends and family, plus work commitments. It's about having the respect for yourself to stop people chasing. The people who are meant to be in your life will come and stay.

I'm also a big believer in doing activities and going to events that will attract like minded people. When I moved to Melbourne, Mum always told me I should join Rotary so I'd meet people. I never did join. But in my own time - and I guess with blogging (and social media) as a vehicle - I started going to events that interested me. Some of these events were for social good, others were just so I could learn new things. I started mentoring at the Royal Children's Hospital, I started blogging, I started going to film and writing festivals, to bands (which I did from my first year of being here), I attended speeches, ate at many cafes, auditioned for community TV and got the role, started speaking outside of my day job. I started putting my name down to do lots things. I even started talking to people on public transport - and have met a few friends this way! Many of these things I'd do on my own (don't be afraid to do things on your own - if you wait for someone to make up their mind about attending the event you want to go to, you may miss out!). But there'd always be someone there to talk to. That common interest we have is a great conversation starter, and I have found that it leads onto finding out we share more common interests. And slowly I made more friends, just by doing my own thing.

I don't see all my friends all the time. I connect with them on social media, see them at conferences and events, send regular texts and catch up in person when we are both free - sometimes months pass between catch ups. We are all busy. I am busier than I have ever been. But I know my friends are there for me, as I am there for them. And I know they make time for me when they can, and want me in their lives.


That 'Be yourself...Just do your thing' is a concept I marvel at and struggle with in equal measures. I feel I've arrived here (when I say here, I guess it's referring to a certain level of success) just by being me. I feel that I haven't really done anything extraordinary. I've just shared my own story. And worked really hard. Anyone can do this. No one is stopping them. Of course, there's other steps involved in telling my story - which is part of the hard work: there's the self promotion, the content creation, the book keeping, the contact making, and planning. And there's self doubt. Which brings me to why I struggle with the concept.

I've thought a lot and written a little about pinching myself - life's great, and I've created this life! But I am also so self conscious of wanting to produce high quality work at all times, so that I don't disappoint. I have also so mindful of how I respond to criticism as well as unwanted contact. The work I do is mostly on the Internet, and apparently the Internet is forever. Recently I've had two encounters that have made me very apprehensive about how much I share about myself, and more aware of how my writing is being misconstrued and where it may be seen offline (without context). These encounters have also made me realise (again) that criticism often comes from a place of someone else's struggles, and it's ok if someone doesn't agree with or understand my work. It's a fine balance of speaking out and just letting things go. Whatever the case, these encounters fuel self doubt, despite how much I push them to the back of my mind.

I am so thrilled to be nominated for a Pride of Australia Medal. As I wrote, thank you to whoever nominated me. But I was talking to Mum about how weird it feels to be seen to be making a difference just by being me. I am not raising money, I'm haven't rescued anyone from danger, I haven't taken an animal (or child) in to raise. Then I think of the people who have contacted me to tell me reading my writing has helped them tell their story or become more confident in themselves, or given them some hope for their own life living with a visible difference or chronic illness. They're why I tell my story - to show people that they're not alone. To give hope. To set a positive example.

These people - the people I've helped I'm some way, or their friends I've made - they've come into my life because I've stopped chasing and started attracting them. By just being myself.


20 July 2013

A trip to hospital in the ambulance. Pride of Australia nomination. Pretty treats.

What a strange fortnight - it's been a whirlwind of good and not so good events! I wanted a calmer week this past week, and for the most part it has been, except on Monday night when I had to go to hospital by ambulance because I had a reaction to my delicious seafood dinner. My lips swelled, face become heavy and itchy, then my body felt like it had a fright, and I had a temperature of 38.9 degrees.

By the time I got to hospital, I was feeling a little better - I think I reacted because I ate so close after having a shower and when I have a shower, my face is stripped of its top skin layer which probably acts as a protectant. When I finally saw the doctor (it was still a 3.5 hour wait after arrival in ambulance) she prescribed me anthisthamine. Fortunately it was not anaphylaxis. The reaction on my face settled, but I felt so tired the next day so I stayed home and slept. My skin is very sore now especially on my arms and hands, but I'll be ok with some rest. I'm booked into the immunologist soon - I just hope I can eat seafood again! I've been very lucky with not having any food allergies, but my dermatology team are always concerned I may develop them. Fingers crossed this was a once off!

The Ambos were amazing! I had four attend my house. The Mica paramedics arrived first - they're able to administer some high level drugs and intubate if required. Then the van arrived - and they took me to hospital. They told me they had been researching Ichthyosis on their way to me. When we arrived at hospital, the female officer sat with me for two hours, doing my obs, and just talking. She said she enjoys that part of her job the most - meeting people. I saw her in action, attending to a seizuring patient in the triage bay. She was so calm and yet so responsive.

Do you have ambulance cover? If you are not covered, a trip in a Victorian ambulance costs $1300. I highly recommend signing up - I pay $40.30 per year through Ambulance Victoria (it's a little over $80 for families, and it covers ambulance trips in other states). Each state's ambulance cover varies - view details here:

www.ambulance.qld.gov.au (Queensland)

www.saambulance.com.au (South Australia)

www.stjohnambulance.com.au (Western Australia)

www.stjohnnt.org.au (Northern Territory)

www.dhhs.tas.gov.au (Tasmania)

www.ambulance.vic.gov.au (Victoria)

www.ambulance.nsw.gov.au (New South Wales)

www.ambulance.act.gov.au (Australian Capital Territory)

No photos of my ambulance trip sorry!


Last night I was looking forward to a night of rest on the couch, with no excitement. I was checking my emails as I was on the phone to Mum and Dad, and saw this!

I shrieked! I've been nominated for a Pride of Australia Medal. Thank you to whoever nominated me. I am excited and proud, but I also feel like I'm just being myself. Thanks for believing in me. What a lovely surprise!


And then, to celebrate everything this past fortnight. I thought I'd treat myself to some late night shopping at 11.30 pm (oh the comfort of online shopping!). I bought these two dresses from Joy, my favourite UK store. I bought a dress from the store on my last day in London (one year ago tomorrow, can you believe?!). They have a sale on right now - you should treat yourself too!

Also, a lovely reader, Eloise, saw me on the train, and left a comment here. I didn't speak to her on the train but admired her bag. I replied to her comment, asking if she was the lady with the amazing green bag that I admired. Yes she was! She linked it in another comment, I bought it (though it's sold out now, but may be restocked) and it arrived yesterday :) Thanks Eloise!

Have a great Saturday everyone! I'm staying home to rest, and will also sort my accommodation for the Problogger event on the Gold Coast in September (those dresses will make their debut there!). Bob Evans is playing when I'm on the Gold Coast - I am so there!

What are you doing today?

Ever been in an ambulance? Do you have ambulance cover?

What pretty things have you treated yourself to lately?


17 July 2013

Meeting Valerie and Stephane - also affected by Ichthyosis.

On Monday I wrote how blogging builds and strengthens communities. My blog brings people together. I've come into contact with many people with, or parents of children with Ichthyosis through writing here. Last year while overseas I met Jack and his parents, and also DeDe. I also keep in contact with many people affected by Ichthyosis online. The Ichthyosis Awareness Month blog project brought lots of new people into my life and I think it definitely strengthened communities.

Over the weekend I met two new friends - Valerie and Stephane - from New Zealand via Mauritius. You may remember Valerie's story from Ichthyosis Awareness Month. They happened to be in Melbourne at the same time (Val lives in New Zealand after moving from Mauritius, and Steph still lives in Mauritius). They were both so warm and friendly, and it's as though we've been friends all our life.

(Coincidentally, on the same day as I met Val and Steph, Courtney, Evan Connor and Brenna met Steph, Curt and Willie all the way across the world in Arkansas.


Courtney also described meeting Steph as having a deep connection because of shared experiences. I'm sure the meeting gave Courtney so much hope for Brenna.)

Valerie and Stephane are siblings - they have a close relationship. Valerie said they really understand each other. Both are affected by Netherton's Syndrome - the same form of Ichthyosis I have. I could definitely see similarities in us all - both visually and in our discussions about our experiences.

We chatted for two hours together on the train and over brunch - we've all experienced difficulties with our hair breaking, our eyes get stringy, we get very cold (like me, Val wore four layers that day!), and our skin is the same level of redness. They both use different treatments than me - a fatty acid and glycerol, and they've been trialling some eye drops that reduce redness on their face. We have, of course, also experienced societal difficulties - the staring, insults and the ignorance. I was telling them a little about how I have an autopilot response of "I was born like this" and rarely get angry, unless it's warranted. I think this advice helped both of them a little. We all agreed that countless questions and staring is tiring, no matter the best of intentions.

Steph was returning to Mauritius that afternoon and so I dropped him at the airport. Afterwards, Val and I went for a bit of shopping, and boy did she shop! She's got a thing for turquoise - which suits her so well :) Also, Val has great hair! And they both have beautiful eyelashes which I joked that I was envious of!

The time spent with them was not limited to discussing Ichthyosis, but it was hard not to given it's the reason we met. We are all around the same age - Steph is 28 and Val is 35 - so we've experienced growing up in the same era. However, they told me it's very hard to cope with Ichthyosis in Mauritius - people don't hold back with staring and commenting (cultural ignorance and fear, perhaps?), and I expect the climate would be difficult. we talked about pain - we all agreed that the physical pain of Ichthyosis is so hard to describe. I felt it really great to articulate our shared experiences together. Steph in particular was impressed by my confidence and very thankful for me telling my story and he said that watching my 'It Gets Better' video gave him a little hope for himself. We agreed that connecting online gives people affected by Ichthyosis more hope than what we had growing up.

Years ago I was hesitant about meeting anyone with this condition. Maybe it was because of my experience with online support groups (especially the illness one-upmanship). Or maybe it was because, at dermatology conferences, I'd meet people who were forever looking for cures and pushed that expectation onto me too. Or I was scared that I didn't have all the answers about how a child may grow up for a new parent. I've learnt to let those worries go. Since I've been blogging, getting to know people through their comments and on Facebook - not just discussing Ichthyosis but showcasing our wider lives - I've been more open to it. When meeting Val and Steph (and also Jack, Julie and Danny, DeDe, and Jeff a few years ago), there was no one-upmanship, no competition of who has it worse, and friendly sharing of information about treatment rather than cure pushing. Above all, there was a great sense of knowing. I came away from our meeting on the weekend so uplifted!

When we said goodbye, we agreed to stay in touch. I'm planning on a stopover in New Zeland next year before I reach America, so I'll definitely be meeting up with Val and hopefully Steph will be there too.

Maybe it was because we were so engrossed in conversation or excited to see eachother, but I didn't notice any stares in our direction. At one point, while on the train, I was relaying a story of a tantruming child telling me he didn't want to look at my face, and so I gave his father my card - suggesting he may to read my blog post about teaching kids about visible difference, and a fellow commuter piped up to tell us what a great story that was! I guess she could see that we all faced the same issues. Being with Valerie and Stephane was like spending time with people of my own culture. Maybe having a visible difference is a culture of its own - where we can all identify with similar experiences, and all belong. We all just know what it's like. We know we're not alone. And that's a relief.


15 July 2013

I won a BUPA Health Influencer blogging award!

"I know we're all supposed to be confident in our self-worth without looking for the approval of others, but to have someone else like you and think you're special is so super powerful it makes me shake."

~ Neil Kramer


On Friday I was awarded a BUPA Health Influencer blogging award. The category I won was 'Positive Life Change'. I am so excited about my win - especially to have won in the company of good friends (Sandra and Nathalie respectively won the Social Good and Family Time categories). The calibre of the finalists was high - and many of them are also friends of mine. These awards are an indicator that blogging is creating awareness around health issues and also building and strengthening communities. These awards show that people are taking notice of bloggers.

I'm so proud to be a winner. I've been blogging for almost four years and it is wonderful to be recognised as a health influencer - not only in the blogosphere but to my readers too. This hard work is paying off. (I got this awesome trophy and also an iPad!)

I thought a little about how I've made a positive life change. I can't remember being anything but positive. A friend told me she believes I have been blessed with an outgoing personality and boundless optimism, but I also think I have actively made choices to make the best out of a difficult situation - be it through study, employment, looking for opportunities, making myself known to those who can make a difference to the world and to me, and being very open about living with Ichthyosis. It is difficult to admit, but maybe my positivity and zest for life is a reason I have a slight tough love attitude. I take very few excuses, and I'm not a fan of wallowing. I think, if I can do it, others can too. Over the weekend I had to call roadside assistance to attend to a flat tyre. In five minutes, I had convinced the mechanic, very concerned and apologetic that I had a red face, that he's not to take pity on me. I told him it's through having Ichthyosis that I've been able to tell my story and make connections, and win the award on Friday. He saw that having a visible difference has not been something that has stopped me from living a very full life.

The more I blog, the more the blogosphere changes. And the more the blogosphere changes, the more I run my own race. I just want to be myself here, tell my own story, on my own terms. I may do the occassional sponsored post, but it has to align with my personal values, the way I live my life and overall blog content. I want my blog to be about developing a portfolio of writing for myself, and make a difference to my readers. And it is. I couldn't imagine its impact when I started writing here almost four years ago.

Just through telling my story, I've made a difference to so many people. This blog has helped many people with visible differences tell their story, accept and become more confident with their appearance, seek the help they need, and form a community. It's taught people about Ichthyosis - a very rare condition. Yesterday I got a message from a reader who is volunteering in Thailand. She said she saw a young girl who looked to have Ichthyosis. My reader showed this girl a picture of me on my blog using her iPad, saying "same, beautiful". Though the girl couldn't understand English, she looked knowingly and smiled - she's not alone with this condition. What a relief that must have been. My reader said that before reading here, she knew nothing about the condition.

The beautiful and courageous Carrie Bickmore (host of The Project) presented me with my award. Prior to the presentation, she gave a heartfelt talk that had the audience laughing and crying. Out of respect I'm not going to cover the points in her talk here, but I will say that I admire the way she's coped with adversity. She ended her talk with "Find the sunshine in every day, and be the best you can be". She's such a role model for me - she shows that success comes to those who work hard, and there's often so much going on behind the scenes - readers or an audience aren't always aware of that. Such a beautiful woman.

To be awarded the BUPA Health Influencer blogging award at the end of last week meant so much. It was certainly a big week - Bob Evans sums it up!

Each winner had to give a speech and I was a bit stuck for words - after Carrie's moving talk and also at the surprise of my win. I did manage to say that it is so good to be able to tell my story here on my own terms, because there's far more empathy in doing so.

Thank you BUPA, Matt and Mandy from Porter Novelli, the judges, you the reader, my medical team, and my friends and family for believing in me. That you think I'm special makes me beam.

You can read about the BUPA blog awards, including all of the finalists, here.

Congratulations to the category winners:

$120 Food Challenge (Social Good)

The Bushwalking Blog (Healthy Lifestyle)

Easy Peasy Kids (Family Time)

Super Charged Food (Healthy Eating) - Lee also took out the overall prize.

The Wellness Warrior (Personal Development/SelfCare)

Bupa health blog awards 2013 finalist  badge



12 July 2013

Front page news. On not being meek and mild.

It's weird when you're featured on the front page of Australia's national, most read news website two days in a row. Who even decides what's news anyway?

(Don't read the comments on this one either)

It's strange when you're deemed the top news story, above a national talk show host, Kanye West and The Ashes. At one point, my story was placed above one about Australia's Prime Minister Kevin Rudd. A friend asked me what it feels like to see my byline on the front page of a(nother) national news site. I said it feels great. Something I've aspired to.

But when a story is told about me - fairly, sensitively and with all good intentions - it feels weird. I'm not the spokesperson and so I want to jump in and add things or direct readers to aspects of my broader life. Aspects where I'm having fun and laughing and my skin isn't the focus (even though it always is that shadow I'll carry around). I wanted them to see me laughing with a toy panda the size of me in the afternoon before I got into that taxi. But I guess, with standing up for your rights comes the perception that you're uptight, entitled, a trouble maker, angry, over reacting. I'm not.

The support has been overwhelmingly positive. I've had texts from friends and emails from people in my home town, and people I don't know, just to say "great job". The majority are glad I spoke out. So much love. I've done a news story for my hometown TV station - where I did work experience in 1997. And I did a radio interview with Chrissie Swan and Jane Hall (so much love!). I've received some valuable mentoring from my friend Meshel Laurie. The media coverage has certainly got people talking about visible difference and disability, which is what I've wanted.

But there's the dark side. This week's been tough. (And not just because I was front page news. I felt all of the emotions this week. I've had a cry. I was so relieved to see my 'real life' friends this week, those ones who know me three dimensionally, that can have a laugh with me, and just get it.)

I've been criticised because of the way I reacted to the taxi driver. Apparently swearing is not justification for someone else's rudeness. This condition is so rare that of course people are entitled to ask, they're entitled to be afraid! Of course.

The nasty comments from News Limited have come over to my blog. For the first time in almost four years I stopped anonymous comments here and have been moderating the comments I don't want to publish. (If you want to comment and don't have a gmail account, use this contact form.) But even with moderation, I still see them. I still saw that I was called an "Ugly Ugly Ugly bitch" and that I was "swearing like a whore". I still saw that people are demanding to know what's wrong with people like me because as Mick of a country full of handouts said, "We the Australian people have the right to know now we have to pay your way don't we? Pay your own way and we wont ask.." Well, Mick, I've never received a handout in my adult life, and when I did, I was fully entitled. Nobody has the right to know or to demand an explanation aboit a stranger's (or customer's) disability The othering shown in the comments section is disrespectful. I've also learnt that the comments on news articles are so much easier to read when mocked by friends!

While I generally respond to peoples' questions and comments with good manners and good humour, I will be rude back to those who are rude to me. I feel that some people (those who don't know me, don't see peoples' reaction to my appearance, haven't experienced peoples' horrified or rude reactions to their own appearance) think I should just lay down and take it. Meekly, mildly. Certainly not vocally.

I don't have to put up with, rise above, toughen up, quieten down, justify my reaction, be a perfect role model (I'll be a real role model, thank you very much), explain the way I look, be a lesson or remain polite every minute of every day. Because just like everyone else, everyone else without a visible difference or disability, I am human too. I'll get upset, I'll get tired, I'll get angry. Because for every question, comment or rude remark someone gives me, I've been received five before that. I'm not going to behave in a way that people condescendingly expect me to.

My blog had over 10,000 hits in a day (according to Blogger). Ten thousand. I can't even. (And never have I been more relieved to see a drop in page views - it meant I was old news.)

It's a little narcissistic but I love looking at my blog statistics. On Tuesday, my blog had more than twice as many hits as my previous biggest day - which was last Friday. Pleasingly, the readers from News Limited stuck around, reading my archives. They read my backstory. My What is Ichthyosis? page has been one of the most visited this week. That's a hell of a lot more people now informed, firsthand, about what it's like living with a visible difference. That is a great outcome.

There's definitely a difference in the level of empathy when someone else has told my story. As Tash reminded me this week, there's been a handful of nasty comments compared to the "bazillion" lovely ones. Like this from Jessie Taylor, a refugee activist and lawyer who I respect so much.

And when things get me down, when I doubt myself, I think of the friends I have around me, and of little Corbin. Corbin is a six year old boy who made me a video. His Mum has been reading my blog for a little while now. Corbin has a visible difference - lymphatic malformation of the face. He thanked me for making a difference. He's a reason I keep telling my story.

Watch Corbin's video here.

Baring my soul and using my face as activism sometimes makes me vulnerable. But boy, does it make people take notice of issues that need to be brought to light.

Thank you for all your support this week. Thank you.



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