05 May 2015

Ichthyosis Awareness Month - Anna and Barbara's story: "Harlequin ichthyosis has changed all my life, my values and outlooks."

I first saw this darling on Instagram - Anna had commented on Blessed By Brenna's photos, and I clicked through to see photos of baby Barbara. Anna told me she'd been reading my blog, which I was excited to know, and I asked her if she'd like to share her story in May. I'm so glad she said yes. Barbara has Harlequin Ichthyosis.  Here Anna writes of how she and Barbara defied doctors' prognosis, instead relishing in the wonderful life they have. You can follow Barbara's story on Instagram

Meet Anna and Barbara. 



"My name is Anna, I live in a small town in Belarus and has a charming daughter Barbara affected with Harlequin Ichthyosis. Barbara is out first and only child, wished and long-awaited. The day of her birth I remember as if it was yesterday. The first thing the Doctor told me after her birth was "Your daughter will die soon". It was a hard time, but thanks God Barbara is alive, happy and feels good. Now after a not easy way the duration of a year and almost five months I know that everything is going to be all right, and nobody and nothing can talk me round.



My husband and I try to give our daughter all the best - I mean the best doctors, the best care, the best upbrining and education. Our day begins with a long bath during that I scrub her extra skin. After bath I oil her a cream.We use creams Avene with termal water. I oil Barbara three-fout times a day. After all the care procedures Barbara has a physical training. This training includes exercises for making her creep and go sooner, and many-many others. Then Barbara plays a lot, but almost all her games are developing and educational. We engage in the methods of some famous doctors and educators of the time, such as Montessori, Shichida, Doman and others. 


Barbara is a very positive child. She is smiling, communicative, easygoing and charming. Other children like her, they often kiss her and give her their toys. Barbara also has the best friend - a kitten DeDe (she always calls him "dede", so we decided it woud be his name). They are always together, even in the bathroom. 

Harlequin ichthyosis has changed all my life, my values and outlooks. Sometimes I feel uncomfortable when people stare at my daughter or even ask me questions, but I let it be. All in all I know that appereance is not such an important thing. I am happy to have my girl in my life, she made my life full of love, and smiles. And now my life is more interesting and useful, and I am not what I used to be before. Life goes on and I love it."

May is Ichthyosis Awareness Month - I am sharing stories of people who have experienced Ichthyosis. Read all stories in the Ichthyosis Awareness Month Blog Project here.


04 May 2015

Ichthyosis Awareness Month - Ciara and Eleanor's stories: "People are so shocked that someone so different can do something so amazing."

Today a mother and daughter share their stories for Ichthyosis Awareness Month. Ciara and Eleanor live in WesternAustralia and are coming to the Australian Ichthyosis Meet this Saturday - I can't wait to meet them! Ciara is 14 and she has Ichthyosis form Erythroderma

Ciara has such a positive outlook - and I love how she's become confident enough to explain why she looks how she does to strangers. The love and pride Eleanor has for Ciara is gorgeous (she reminds me of my Mum!). This line made me tear up - so beautiful: "Oh Mummy, don’t apologise, I wanted to be born. I love my life”

Eleanor speaks of Ciara's talents - we share many of the same interests. Maybe creativity is in the genes too!


Meet Ciara and Eleanor.

Eleanor's story:

"Our beautiful daughter was born in June 2000. When she was born she was really red and her skin was really dry. As the months went by, our family doctor thought she had severe eczema and referred us to a dermatologist when she was 5 months old. He confirmed that she did in fact have eczema. We never seemed to be able to get on top of it and when Ciara was 4 years old, our family Doctor had had enough and contacted our dermatologist advising that something needed to be done, he finally referred us to a paediatrician dermatologist at our Children’s hospital, Dr Anne Halbert. On sight Anne diagnosed Ciara with CIE (congenital ichthyosiform erithroderma), my husband and I were stunned. We found out that we both carried a ‘defective’ (don’t like that word) gene which resulted in Ciara having ichthyosis. We were devastated, there was no cure, only management. We also found out that we had a one in four chance of having another child with the severest form of ichthyosis, Harlequin. Mind blowing! We decided not to have any more children and to concentrate on Ciara.

Since then, Ciara has been diagnosed with a chronic bone disease, scoliosis and short growth stature. Her whole life has been consumed with Doctors appointments, Specialists appointments and Hospital appointments. For over 2 years she has given herself 2 daily doses of injections and she decided last year – enough is enough. No more injections, no more immunosuppressants . Ciara made this decision herself. She had had enough.

We have brought Ciara up to face her ‘challenges’ and to deal with them head on – there is no such word as ‘can’t’ in our house – we always find a way to deal with things – even if it’s just to lie down, watch movies and have snuggles! That is the best medicine in the world.

It hasn’t been easy for Ciara and as she gets older we seem to be finding ‘other things’ but we deal with them.

I apologise to Ciara all the time, saying sorry for how Daddy & I made her, one day, she said to me “Oh Mummy, don’t apologise, I wanted to be born. I love my life” – what more could you ask for!

We try to be positive as much as we can, sometimes I get really angry when complete strangers speak you about your child’s ‘sunburn’ and offer all sorts of advice. Recently I had someone argue with me that my daughter had sunburn and not a skin condition. We soon sorted that one out.

Ciara is the most beautiful wee girl you could ever possibly meet. She endears herself to everyone – beautiful on the inside and out. She sees the good in everyone, very kind and considerate. Avid reader (always got her nose in a book) and has been writing books since she was about 11. She also has a beautiful voice and has even got her own album! We are SO proud of her! Reach for the starts! That’s our motto! And NEVER give up!

Carly asked me to write something a couple of years ago but I found it really hard – this was our daughter – perfect in our eyes and the most beautiful wee girl in the world. I found it really difficult to write about her ‘hardships’. This year I was late lodging this as I had to go think carefully about all the things I wanted to say. This is very emotional, for me.

Ciara is SO excited about The Meet – she has NEVER met anybody like her, even her dermatologist has never met anyone like her. She is unique in every possible way. The light of our lives and a blessing."

Ciara's story:



"My name is Ciara and I am 14 years old…when I was four, I was diagnosed by my Dermatologist with Excema and Ichthyosis. I was in hospital for a week and when in there they taught my parents how to handle my skin conditions…then I went home, lucky for me my case of Ichthyosis isn’t as bad as some but it doesn’t stop it from being really sore sometimes…

Some people think that when you have a condition it means that you’re different but they’re wrong, you are simply special but some think being special is an invitation to be mean or to bully and trust me when I tell you that I’ve had my fair share of people, even older people who should know better, whisper behind my back not so discreetly and even if they do whisper. I always hear them…but last year, for the first time, a little girl asked her mum why I was so red and her mum said to her, "it doesn’t matter if she’s red, she is exactly the same as you and I, she still has arms and legs, fingers and toes and feelings". And when I heard this women say this I turned around and smiled at her and asked her if she wanted me to explain and the look on her face. She was so shocked but she still managed to nod and so I knelt down in front of the little girl and explained to her about my conditions and when I was done I shook her cute little hand and she gave me the biggest smile and it made me so happy that at least some people have a warm heart and are able to teach their children that judging is bad.

We may be special but it doesn't mean we are aren't the same, we all have hobbies and friends, I have many friends and they never judge me and I have tons of hobbies like reading and writing, and singing! I love singing. And when people look at you as you read a story or sing a song and they are so shocked that someone so different can do something so amazing, thats when they realise that you aren’t different but simply special and then when they share a smile with you, it always makes me grin. 

The challenges that I’ve faced through my short life only make me stronger and more willing to do more to make others smile and I will face many more hurdles through my life but when I face them head on I will always beat them and thats the most important thing…so never give up, always push on and you’ll find that when you face these hurdles it’ll draw peoples attention and those people will go on to be your friends and making friends is the best thing that will ever happen to you. I hope you can face your own hurdles and beat them and then smile on the other side, because thats all that matters."


May is Ichthyosis Awareness Month - I am sharing stories of people who have experienced Ichthyosis. Read all stories in the Ichthyosis Awareness Month Blog Project here.


Be social: follow me on Facebook, Twitter and Instagram.

03 May 2015

Ichthyosis Awareness Month - Steph's Story: "Your life is what you make it."

I am so excited to share Stephanie's story for Ichthyosis Awareness Month 2015! I've been her online friend for years, and it's been a delight following her journey. She's given hope to so many patients and parents. Steph's got Harlequin Ichthyosis - the most severe form. I first wrote about her when she gave birth to her first child, and late last year, she gave birth to her second - a little girl.  She's the first known case of a patient with Harlequin Ichthyosis to give birth - which is a huge milestone! The reality of me having a family has become clearer, and I've certainly looked to Steph for reassurance that it can be done.

I really like what Steph writes here - we think along the same lines and have reached the same level of acceptance of our condition. I posted a link to a story about a potential cure for the type of Ichthyosis I have, and here's how she responded, which led me to ask her to expand on her thoughts for this blog post:

"As crazy as it may sound- I have Harlequin Ichthyosis & I wouldn't change a thing. It's made me who I am today. It's made me more accepting of others, stronger & able to laugh at life frequently (sometimes the choices are to laugh or cry).. Sure I have no idea what it's like to live without H.I but I would never want to. It'd make life easier but that's why God made people with Ichthyosis tough as nails! I could see why a parent may find it pretty interesting though! I've learned that being a mommy, you're ALWAYS trying to help your baby avoid pain or any struggles that can be avoided."

You can read Steph's old blog and her new blog and chat with her on Twitter



Meet Stephanie. 

"Everyone is handed adversity in life. No one's journey is easy. It's how they handle it that makes people unique."
~ Kevin Conroy

"Your life is what you make it.

Everyone with Ichthyosis is different. Everyone affected by it has a different opinion... Most people live their life by how they were raised, traditions, beliefs, morals, etc. 



I've been asked many times if a "cure" was invented would I want to take it? My answer? No. 

I was raised believing in an incredible God. I was raised knowing he made me with a purpose. 

"You knit me together in my mothers womb, I praise you because I am fearfully and wonderfully made."
~ Psalms 139:13-14. 
 I've always dealt with people staring, commenting, sometimes being unbelievably rude. I used to get upset and honestly, sometimes I still do. But I was lucky to have a mom who was quick to jump to my defense when I was too little to defend myself or educate people. As I got older she taught me to take up for myself and educate others the best way I could.

When I think about it, I've never been interested in a "cure". After all, I'm not sick. When I hear the word "cure" I think of someone who is sick or dying. I do have a skin disorder, it happens to affect more than just my outer appearance. But I'm not sick. 
I don't believe God gives you obstacles to overcome because you done something wrong. In fact, I believe just the opposite - I believe he gave me this disorder because as we was creating me, he knew I was going to be strong. He knew who my mom was and how she would take care of me. He knew I would educate anyone and everyone I could. He knew what I could and would do with my life. 

I know this post is pretty short and simple but so was the was the question. 

Am I interested in a cure? No, ok. Not in a million years. Love yourself.
"For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future." 
~ Jeremiah 29:11"


May is Ichthyosis Awareness Month - I am sharing stories of people who have experienced Ichthyosis. Read all stories in the Ichthyosis Awareness Month Blog Project here.

Be social: follow me on Facebook, Twitter and Instagram.



02 May 2015

Ichthyosis Awareness Month - Alexander and Maria's stories: "I try to ignore these comments and stares but it makes me sad, and I feel so different."

A mother and son share their stories today. They're coming to the Australian Ichthyosis Meet on Saturday - and both Alexander and Maria are looking forward to making new connections. 

Their stories reiterate the need for connections with other patients and families affected by the condition, and for simple, accessible information about the condition.  I am so glad they will have that experience very soon! Alexander has Netherton's Syndrome.

Meet Alexander and Maria. 

Alexander: 

"My name is Alexander and I am 11 years old. I like playing and watching soccer.

Since I was very little, people have asked me if I’ve been sunburnt or make comments about the way I look. My parents and I get stopped quite often and people always feel free to give their advice or just stare at me when I’m walking past.

I try to ignore these comments and stares but it makes me sad, and I feel so different.

I often reply to people’s comments or questions with ‘no, I was born like this’. See, I was born with Ichthyosis, a disorder that makes my skin red and flaky.



I am excited about going to the conference in May because I get to meet other people like me. My mum has always talked about going to the US to a conference but now we get to have one here, in Australia. I will be able to ask them questions about how to look after my skin better and maybe even help others by sharing how I take care of myself. I would like to ask them how they answer people’s comments or deal with people’s stares and what its like when I grow up. I can’t wait till May!!"


Maria:

"Nearly 12 years ago, my husband and I were so excited to be expecting our first child.

I read all about the stages and development of the foetus and knew all the labour options available to us. We was prepared! Or so I thought.

From the moment my son was born, I knew something was wrong. As I held my child, I could see the pain in his eyes and I could see the panic in the nurses and obstetricians face. They told me that my son, Alexander was not going to daycare, or play outside with other children. All I could think of was that my child was going to be at home, no friends, no life!!!

We have always had an amazing medical network and supportive family and friends, but I still felt alone at the time. There was no one who REALLY understood. The most difficult thing to deal with was the lack of information we had available at the time. The literature was quite complex to understand and didn’t provide us with tips or other helpful information on how to look after our son.

Its hard to believe that 11 years later Alexander would have attended daycare since the age of one, swims in the local swimming pool and has fun at Wet n Wild during summer, participates in school sports, plays soccer and has a great group of friends at school and out of school. He touches everyone he meets with his funny and ‘glass half full’ attitude.

We are so fortunate to have an energetic and inspirational person like Carly in our lives. Her stories drive others to strive to achieve their goals, no matter the challenges you are dealt with. There is no limit!

She is the driving force for the first Australian Ichthyosis meeting that will be held in May 2015 and we are so excited. It means that we get to share stories with others, make new friends and my son will not feel so different. He will realize that he can achieve whatever he sets his mind to. We are really looking forward to it."


May is Ichthyosis Awareness Month - I am sharing stories of people who have experienced Ichthyosis. Read all stories in the Ichthyosis Awareness Month Blog Project here.

Be social: follow me on Facebook, Twitter and Instagram.

01 May 2015

Introducing Ichthyosis Awareness Month 2015. "Create the things you wish existed."



Today is the start of Ichthyosis Awareness Month - where I will be sharing stories by patients and parents affected by the rare severe skin condition Ichthyosis. There will be one or two stories each day. You’ll get to know that the range of Ichthyosis types is extensive and the symptoms, appearance and treatment of each varies. You will read about peoples' struggle to come to terms with a life changing condition, and also the courage to ignore society’s perceptions of difference and gain the self confidence to love and celebrate themselves. The contributors range in age - from 11 years old to their mid 60s. And you’ll also read about some of the cultural differences - there are contributors from Norway, Belarus and Indonesia this year. I am so excited to bring these stories to you. You will be able to read all of the posts here, as they’re published.

While I’ve still been working hard to collate, edit and upload the posts this month, I have sourced help from a few editors who I’ll be paying to edit the posts and create social media content. I have not even made a video for this year’s awareness month - I hope to have one for the final post. This is because I’ve been so busy planning the first ever Australian Ichthyosis Meet, to be held next Saturday at the Melbourne Zoo. (There’s nothing like planning two events - one online and one meet - at once, and on top of my day job! Oh and did I mention I'm planning my wedding too!?!) I am SO excited! But so tired!

And so my theme for Ichthyosis Awareness Month 2015 is community. The blog project brings people together online, and the Australian Ichthyosis Meet will bring people together face to face - allowing us to laugh and maybe cry and experience the emotions of being with people who just get us.

Last September I was sitting in a room full of bloggers, inspired by Darren Rowse’s keynote. I remember him encouraging us to nurture our communities and suggested we invite our online communities to meet in person. And then I saw a video of an event that Olympus ran, bringing Fat Mum Slim’s readers together at a series of lunches. It clicked. I wanted to bring together the community I’ve helped to build and foster. I wanted to hold a meet for the Australian Ichthyosis community.

There had been talk about it in our Facebook group last year - but nothing concrete was organised. I used my event planning skills and networks I’ve developed through blogging to create this meet. People and organisations have been very generous - and I am so thankful to everyone who has donated money or products.

While the meet is about the attendees, I created it because it filled a gap in my past. It will focus on the social aspects of Ichthyosis, rather than the medical aspects. There wasn’t this community when I grew up. There was just medical support available - which is fine, but people with rare conditions need social support from peers. I’ve been to many medical conferences, but nothing social. At medical conferences, the patients are often exhibits. I wanted this meet to be inclusive - where patients are the stars.

Some attendees - adults and children - have said they’ve never met anyone else with the condition before. They are very excited to make connections and learn from the doctors present. The internet has brought us itchy, fishy skinned together. We are so lucky.

So while I’m going to be quiet on the blog and social media leading up to the meet, you can read others’ stories. And of course I will be sharing a post about the day during the month.

The Ichthyosis community is so important - for information sharing, but (in my opinion) more so because it helps people feel less alone. But having Ichthyosis is not a competition of who has it worse, whether someone is using a natural or pharmaceutical product or for resentment of others’ happiness. We all have different experiences living with the same condition, we are all doing the best we can, and competition does not help. What we all need from each other is support. And I believe that meeting each other in person will help strengthen the already supportive Australian Ichthyosis community.

Writer Elizabeth Gilbert wrote a great post on her Facebook page earlier this week. She said "Create the things you wish existed”. She encouraged us to fill the space that is missing in our lives for others - her words urging people to form communities. I found them completely fitting for Ichthyosis Awareness Month: "Out of the emptiness of despair and loneliness, you must try to create fellowship and friendship”, she wrote. And,"Out of the emptiness of division, you must try to create communion."

And I have. I wish this community existed when I was younger. I organised the meet because I want the people of our community to grow up knowing there are others out there who are facing the same challenges. I want friendship to build and flourish through peer support networks. I want families to connect and support each other. I can’t wait for next Saturday (and I also can’t wait for the sleep afterward!).

Enjoy Ichthyosis Awareness Month!

For more information and to support research and networks for Ichthyosis, visit:
Foundation for Skin and Related Skin Types (FIRST)
Ichthyosis Support Group
Friends of Ichthyosis

For support and education around living with a facial difference, visit Changing Faces and Positive Exposure.

You can read stories from 2013 and 2014's Ichthyosis Awareness Month too.

I'm not asking you to donate money. I do ask that you read and share these stories widely - to encourage people to think about how they react to visible difference and disability, and to continue to build a supportive community That will make the world of difference.


Be social: follow me on Facebook, Twitter and Instagram.


30 April 2015

MEDIA RELEASE: Australia's first national Ichthyosis meet. (Peer support meet comes to life at Melbourne Zoo in May)

MEDIA RELEASE

30 April 2015

Peer support meet comes to life at Melbourne Zoo in May


Appearance activist Carly Findlay, in partnership with the Genetic Support Network of Victoria (GSNV), will host the first official Australian Ichthyosis Meet in Melbourne on Saturday 9 May 2015, as part of Ichthyosis Awareness Month.

This event gives adults, children and families affected by Ichthyosis the chance to meet others with this rare skin condition which affects an estimated ten to twenty people in a million.

With 74 people registered to attend, including 23 who have Ichthyosis, the event has certainly been wells-received. One attendee, nine-year old Lucia, is particularly looking forward to the meet because 'it will feel awesome to be in a room with no-one staring at me'.

The organiser, Carly Findlay, explains that because Ichthyosis is such a rare condition, many people who are affected have never met anyone else who could truly understand their condition. Carly herself, as a child, hadn't met anyone else with the rare, severe genetic skin condition. 'I thought I was all alone', said Carly. Her hope is that through attending this first-ever Australian event, friendships will form and self-confidence will grow among attendees.

'People with rare conditions need social support from peers' said Carly. Peer support, through opportunities such as the Australian Ichthyosis Meet, is known to have positive effects on the health of those involved by reducing feelings of isolation and depression, improving their sense of wellbeing, and improving coping skills and behaviours.

For another attendee, 11-year old Alexander, the Australian Ichthyosis Meet is a dream come true. 'Mum has always talked about going to the United States to a conference but now we get to have one here in Australia. I will be able to ask them questions and maybe even help others by sharing how I take care of myself. I would like to ask them how they deal with people’s stares and what it's [going to be] like when I grow up', said Alexander.

The one-day event, to be held at the Melbourne Zoo, includes an informal meet and greet, time to explore the zoo as a group, and dinner. Dermatologists Professor Ingrid Winship and Dr David Orchard will also attend.

Visit carlyfindlay.blogspot.com for updates and more information before and after the event.

Media contact: Carly Findlay, carlyfindlay8@gmail.com

Further reading: Systematic review of peer-support programs for people with cancer. Hoey LM et al. Patient Educ Couns 2008 Mar; 70(3): 315-37 (http://www.ncbi.nlm.nih.gov/pubmed/18191527)

- ends - 

BACKGROUND

What is Ichthyosis?

Ichthyosis is a rare genetic or acquired skin condition affecting an estimated 10-20 individuals per million.

Ichthyosis is characterised by persistently dry, thickened, rough, fish scale skin. There are at least 20 varieties of ichthyosis, including inherited and acquired forms.

People with Ichthyosis have a normal lifespan. However those with very severe Ichthyosis may need to spend several hours each day caring for their skin so they can lead as much of a normal life as possible.

Source: http://dermnetnz.org/scaly/ichthyosis.html

About the organisers

Carly Findlay

Carly Findlay is a Melbourne-based writer, speaker and appearance activist. In 2014 Carly was named as one of Australia's 100 Women of Influence by Westpac and the Australian Financial Review.

Carly is an established online writer, winning several awards for freelance writing and blogging. She shares her story about what it's like to look different, and connects people with Ichthyosis and other visible differences through her activism. She lives a great life with Ichthyosis – enjoying travelling, seeing live music and exploring activism and support for chronic illnesses through social media. She has run the Ichthyosis Awareness Month blog project in May 2013 and 2014 - giving people affected by Ichthyosis a chance to tell their story on her blog. Carly has a Master in Communication. She blogs at carlyfindlay.blogspot.com.

Genetic Support Network of Victoria

The Genetic Support Network Victoria (GSNV) is a vibrant and active organisation committed to promoting the interests and well-being of people affected by genetic conditions. The Network is proud to be associated with a wide range of support groups throughout Victoria and Australia as well as peak professional bodies such as Victorian Clinical Genetics Services.

Assisting individuals and families with the 'human', non clinical side of genetic diagnosis is common place in the day to day activity of GSNV. This includes assisting people with access to services, connecting with others, education, advocacy, support and information. Visit gsnv.org.au for more information.


27 April 2015

The wind beneath my wings

 


One Saturday night earlier this month, Adam and I went to his parents’ house for dinner. My mum was there too. Our mothers are around the same age and have similar music tastes - Creedence Clearwater Revival, Lionel Ritchie, Janis Joplin, Joni Mitchell. His mum played Bette Midler’s Wind Beneath My Wings - which I came to know through Beaches, which I’ve watched many times since I was nine years old. I dramatically serenaded Adam (twice), moving my arms to simulate wings, and pointing at him during the "you, you, you’s”. Pretty sure he had cold feet about our wedding! Just kidding. It’s still happening.

I listened to the song again the next day, taking in the lyrics:

"It might have appeared to go unnoticed, but I've got it all here in my heart.
I want you to know I know the truth, of course I know it.
I would be nothing without you."


And it occurred to me that Adam is indeed the wind beneath my wings.Not in the "walking a step behind" me way that Bette sings about. But in the supportive way. Because we walk together.

And I don’t want him to be the beautiful face without a name - I want everyone to know his name and how wonderful he is (well, as much as he is comfortable with - I never want to compromise his integrity or privacy online, and always ask him permission to post or run updates and blog drafts by him). When we were at Layne Beachley’s fundraiser last month, she introduced herself to him, saying she knew who he is as he’s famous on the internet, and he looked so chuffed.

Before I’d even met Adam, I wondered how I’d have time to have a boyfriend. When would I fit it all in? How could I do all the things I wanted to and commit to a lover? I was Miss Independent.

But pretty soon, I found out I can have it both - a loving, busy relationship and my independence. And looking back on these almost 18 months, I’ve managed to do so much - buoyed by Adam. I am thankful.

Now, I am busier than ever. I attribute my achievements to his love and support. While I put in the work - writing and preparing and promoting and talking - he gives me the time and confidence to do this.

This man is the most supportive, interested, generous, proud partner I could ever wish for. As I write this, he’s given up his Sunday to make a chalkboard for the Ichthyosis meet. He comes to see me talk and gets involved in things that I do. Last month he drove me on a three hour round trip on a weeknight so I could speak at an event. He came to the event - the only man among 30 women - mingling and laughing along. Amazing.

I hope that I’m as equally supportive and nurturing of him. I try. Every day I see something more to love about him. He’s come out of his shell so much - his confidence is soaring. I am so proud of him.

We were talking about the good things we in our relationship. We agreed that one of the best things about it is being able to be ourselves, with each other's support. I honestly think we've found each other which has meant finding ourselves.


 

25 April 2015

One plus four equals life - sickness, rest, donations and a party.

Hello! Happy Saturday. I've been awake since 3.30 am as I drove Adam into the ANZAC Day service - and later I'll go with him to check out the poppies in the city. It's time for one plus four equals life again - it's a great way to reflect on the week.

I've been unwell this week - just a cold - but enough to stop me and make me realise I must rest. I'm allergic to cold and flu tablets so it's been lemon and honey and brandy, and chicken soup for healing. I had Wednesday off work and spent the whole day in bed watching movies. I felt so rested. And now my cold is nearly gone.
Things are coming together so well for the Australian Ichthyosis meet. I've been seriously busy with preparation. Every day a new package (or seven!) arrives, filled with giveaways for the guests. My living room is stacked with boxes of stuff. These bags will hold those giveaways - they were generously donated by Brad from Your Name Here Promos. If you want to donate, you can still do so here. I am overwhelmed with how generous people and companies have been - thank you everyone!

We spent some time at a craft market on Sunday, and on the walk there, I admired the autumn colours. Aren't these colours just beautiful?

Last night was Camille's birthday party - my second party of the night! We celebrated at a luxe bar - I was so happy to be sitting near a fire place.

Finally, it's ANZAC day today - I shared something about it on my Facebook Page. Lest we forget - not just those who served 100 years ago, but those affected by present day wars.

I hope your day is good, whatever you're doing.

Ps: If you've come here from The Mighty, thank you! Here's more info on Ichthyosis. Be sure to follow me on Facebook and Twitter.

 

24 April 2015

Three tips for exploring museums and art galleries.

I went to some amazing museums and galleries in Milan and Paris, and a few in the UK too. The history they hold is breath-taking. I loved learning about how people lived, and seeing iconic artwork. It's also interesting seeing how others take it all in - lingering looking, or quick photo snaps to look at later. How lucky was I to absorb such culture and history!

I saw The Duomo in Milan – dating back to the 1300s. How the heck did they build such an enormous, detailed building with the technology at the time?!

Carly Findlay outside of the Duomo, Milan

The Duomo, Milan
I loved that there was a small fee for taking photos - an honesty fee. I think it was two euro - and the staff wanted visitors to take photos and share them.
Inside the Duomo, Milan
 As I took this photo, about 50 others stood before the window taking the same photo.
Stained glass windows inside the Duomo, Milan

the alter inside the Duomo, Milan

the alter inside the duomo, milan


I went to the National Museum of Science and Technology: Leonardo Da Vinci in Milan – filled with planes, ships and cartography. I was in awe of how innovative inventors and designers were centuries ago and also how technology has progressed.  There were some great displays of modern technology that was very hands-on for kids.

Sign at entry to Museum of Science and Technology, Milan

Entrance to Museum of Science and Technology, Milan

Cartography, Museum of Science and Technology, Milan

Steam locomotive, Museum of Science and Technology, Milan

War plane - Museum of Science and Technology, Milan

The ballroom inside a ship. Museum of Science and Technology, Milan

Ship. Museum of Science and Technology, Milan

Steam locomotive wheel, Museum of Science and Technology, Milan


I also toured The Louvre (huge!), Musee de l’Orangerie (beautiful paintings by Monet), and the Fragonard Perfume Museum in Paris. I think I saw the museums of music and ballet too, but only went to the ballet gift shop. 

The Louvre, Paris

The glass at The Louvre, Paris

Looking out under the glass at the Louvre, Paris.

Selfie with Mona Lisa.
Carly Findlay in front of the Mona Lisa, the Louvre
 It was Tuesday afternoon at the Louvre and it was so busy!
Crowds at the Louvre, Paris

 Surprisingly, the perform museum didn't smell as amazing as I imagined.
Fragonard Museum, Paris

No photos allowed inside Orangerie - a pity because it was filled with Monet. Amazing.
Orangerie museum sign, Paris

And on my most recent trip to the UK, I visited Inveraray Castle in Scotland, the outside of the Tower of London, the Victoria and Albert Museum and Cardiff Museum in Wales. There may well have been others but I was feeling pretty unwell in London and Cardiff.

I was SO amazed at the beauty of this castle. It's huge and so detailed. I wanted to go inside. I think Downton Abbey is filmed there.

Inverary castle, Scotland

Jelly moulds in the kitchen of Inverary castle, Scotland

 A friend and I sat outside the Tower of London. In hindsight I should have gone inside!
The Tower of London
No photos allowed inside the Victoria and Albert Museum. Maggie and I asked a stranger to take this one outside.
Carly Findlay and Maggie Alderson outside the Victoria and Albert Museum London


The European museums and galleries were definitely more populated than the ones I visited in the USA. 

Here's what I learnt:

Book ahead online to avoid queues

I queued for almost an hour in Milan and Paris – one time I queued longer than I spent looking at the art! There were often two queues – one for prepared people who booked ahead, and one for people who just turned up. The first queue moved very fast and I was envious! I will book ahead every time now. 

I also recommend that you take water and a hat – it can be really hot waiting in a queue, no matter how long you have to wait! I waited for ages in Milan and think I got sunburnt!

Also, if you don't book online, at least check the price before you go. I didn't end up going inside the Tower of London due to the price! (I'd rather see a show on West End!)

You can’t see everything at once.
I was amazed with how big the museums and galleries were! The Louvre was huge! (It’s over 60,600. And they are very busy and crowded – many are top tourist destinations. And so it was impossible to see everything in a limited time. 

When you book your ticket online, check out how big the museum or gallery is, look at the exhibitions and plan what you want to see before you go. Collect a map at the entry (or print one before you go) and mark your route. And if you don’t see everything you want to see on your first visit, it’s a great reason to return! (And museum and gallery exhibitions change – so you might be lucky and see something you missed out at a later date in your hometown!)

Save your money for the gift shops.

I measure the quality and my enjoyment of a museum or gallery on the gift shop! If it’s stocked with amazing art and craft, I am happy! You can often get replica prints in frames or on cards, magnets or scarves from gift shops. And they stock an amazing range of jewellery – which never weighs much in your suitcase on the trip home. 

(I bought a cute brooch from the V&A giftshop – online though. It's a design by Cilea
Balloon brooch by Cilea

I thought I’d run out of money close to the end of my trip. The postage was a killer, but I love this brooch so much. 

I bought a cute pressed flower necklace at the castle in Scotland, and some gifts in the museum in Cardiff. 

When I was in Chicago, I found a gorgeous mosaic plate that was a bargain – though it was too big and fragile to carry around the world with me (or post home) so I do hope it found an appreciative owner.

Have you got any advice?
Bought anything special from a museum or gallery store?





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