Hellew....

It's been a while (a long while) but I'm back!

As some, or most of you know, we have a Facebook page out called The Girl Behind the Face https://www.facebook.com/GirlBehindTheFace We are doing this for several reasons, raising awareness of cyber bullying and visible differences, but also, we are doing this to hopefully build a platform to raise even greater awareness by finding a publisher for our family book, The Girl Behind The Face. 

 

If you want to support us then please click "like" our page where you get to keep up to date with what we do, plus each Saturday, there's a new post, with an equally cool photo to match! We've got interviews there too as well as all the media exposure too. 

We've also got a website too, http://thegirlbehindtheface.weebly.com Please check it out. 

See you on Facebook!

:-)

Hunter's Guest Post...Yep, She's Done it!

This Month's blog post comes from both Hunter Steinitz and myself, hope you enjoy it!

I've known Hunter for a pretty damn long time, for as long as I could remember. She's my Harlequin Ichthyosis sister from another family. And I adore her to pieces.

Way back when, when the internet wasn't quite what it is today,  Hunter's mum, Patti and my mum would communicate via written correspondence and they would seek guidance within each other as two mums raising kids with a life threatening skin disorder. This was a few years after I was adopted nobody knew exactly how long I had left. Our Paediatric Dermatologist in Hong Kong, knew of the Foundation For Ichthyosis and Related Skin Types and told my parents of this. And after my parents got in contact with the Foundation, it was the Steinitz family who provided a light in what must have been a very dark and uncertain time.  It was Patti and Mark who provided sound advice because they knew exactly the struggles my own parents were facing,the scares, the uncertainty, the lot.

Unfortunately, Patti is no longer with us. But she continues to shine through Hunter as she continues to speak and raise awareness of having a visible difference such as Harlequin Ichthyosis.

We met for the first time in Seattle, 2002 at the FIRST Skin Conference. I was about 9, she was 7 or so. (she'll have to correct me!) I must admit that when we first met, I wasn't sure of this person who looked almost identical to me. In a way, I felt like suddenly, I was no longer the one who stuck out. But I also didn't like that suddenly, there was more than one of me!

You'll notice in this picture (found by Mark, Hunter's awesome dad) that while Hunter is trying to be as lovely as humanly possible, I retain my disgusted "expat brat" look! (despite us both having just been bought stuffed toys from the hotel giftshop!) My hope is that if I manage to kick my arse into gear, I'll be able to attend the 2016 conference in San Diego and we WILL recreate this photo, garish headband and all!

I asked Hunter to write me a post about life in general. My blog is NOT all about a life threatening skin disorder but it's also a bit of a "free space". Hunter goes on to explain about "communication" and just how vital it is to all of us.

Hunter Says:

Communication is a necessary part of any relationship. You need to feel comfortable enough with the other person that you can openly convey your thoughts without fear of being misinterpreted. Over the past several months, I realized just how important communication is to maintaining solid relationships.

A few months ago, I got into a fight with my best friend. I thought that I was communicating my thoughts clearly but in fact I was confusing her by throwing new stuff at her without giving her any chance to react or even form an opinion. I just assumed that she knew what I meant and I imagined her response rather than listened to her actual response. Then I got mad at her imagined response and stopped talking to her for a while. Those few weeks that we didn’t speak were rough. But eventually, we found a way to work through it.  But my lesson in communication doesn’t stop there.

When I came home from school, I came home to a huge ball of misunderstandings. We have a number of close family members living with us. The thing about our family is that we don’t like to make trouble. We are more likely to see something that bothers us and decide to let it go (cue Frozen music!). All joking aside though, we try to let it go but a little bit of that anger and frustration stays. Time passes we move on to the next bother.  But then we do it again, and again, and again. Notice a pattern here? We keep letting the little things go so as to not start something over what we feel to be nothing. But eventually all that festers and boils until we cannot control our anger anymore. We lash out over something that seems minute but is actually the representation of a much larger problem.

Sometimes we think we know how the people around us are going to act, what they will do, and how they respond. I think it’s important though that we don’t let what we think become what we interpret to be truth. Just because I think someone is going to act a certain way doesn’t mean that they are going to act that way. Bryant H. McGill said, “One of the most sincere forms of respect is actually listening to what another has to say.” I need to pay more attention to what people actually say and do versus what I think they will say and do.

I'm blessed to now have a wonderful relationship with Hunter and her dad and it's all down to Social Media and today's technology. 10 years ago, we would have never been able to chat in the way that we do now. I love that Hunter always understands how I feel when i start bombarding her with messages when I'm grumpy. She is quite often the voice of reason and will even remind me to "be nice" when I feel compelled to answer emails which irritate me. Having a severe lack of Ichthyosis support network in HK really sucks. This is why I value the networks and contacts that I have now. 

But it's okay, she's dealt with plenty of strange behaviour from me, she also accepts that I WILL mock Americans in the same way as she WILL probably come back from London with a crappy version of the Queen's English :)

And the numerous iMessages, FaceTimes, Skypes and Facebook messages are just gonna keep coming!

           A group photo of all of both our families together in Seattle 2002...and none of us have actually changed! Except maybe Hunter is tons prettier than me!

To Future Me

I write this after coming across a post on Facebook by Carly Findlay titled, "To my Unborn Daughter". I've decided to write a letter to my future self because well, I don't want to dwell on my possible lack of longevity, I'd prefer to look forward and pray to God that I will live as long as I allow myself to. Does that sound odd?! Heaven only knows! Imagine I'm much older, for dramatic effect! This may be a bit confuzzling, but it's my way of taking to my future self. Take heed. 

Dear Future Me,

I am your younger 22 year old self and hell, I've got the time, so I might as well jump straight in. Firstly, congratulations on reaching 35. For someone who wasn't supposed to live for long, you've certainly managed to excel yourself. You've proved doctors wrong with your stubborn attitude, you've got a good life and I hope, you're happy. I want to explain to you a few concerns and my reasonings. 

I'm consciously choosing not to have biological children, despite the advertisement of big boobs and lookalikes. I am aware that people with ichthyosis have got biological kids and I applaud them. But it's not for me. My body already works a gazillion times faster than the average person and to throw a child into the mix would be overkill. I am a relatively healthy and fit person now, but I credit that to all the activity I do. I already get tired from just an average day, imagine that with a pregnancy. Plus, do I really want to risk passing the Harlequin gene onto my child? Would that be fair for them? To have to suffer? No, I, along with my medical team have worked hard to get me where I am today and I would like to keep it that way. I won't rule out adoption though, I come from a family where adoption is kind of de riguer so I suppose it will happen and any man I choose to marry may just have to accept that biological kids are out, and adoptions are in. 

Secondly, be more open with yourself, be gracious in receiving others, be confident in yourself and know that with pitfalls, people will have your back, mostly. Go out there, you didn't survive this long to be a sad lonely tosser. Know that when bad things happen, it's okay to cry, it's okay to rant, because you're human. Know that just because you're already a strong person, doesn't mean you have to be the strong person all the time, it's okay to let your guard down sometimes. And learn to laugh naturally, don't force it.

Boys and men. Huh. It's either gonna happen or it won't. Don't push it too hard. You're going to find mr Right one day. You don't need Tinder and you don't need OKCupid. "Nuff said. 

I hope that by the time you read this, there will be more research into the Harlequin gene, though I can't imagine that happening just yet. I can however, imagine more creams, more steroids, but also less of it. Don't pump your body with unnecessary things, you'll be immune to it soon enough and that would suck. 

I hope people will become more tolerant of you and those with visible differences. It's a tough world out there. I hope the public will be more tolerant of us and won't have the audacity to throw around random bits of abuse at people they deem to be different. Remember, if people hurt you because of being you, know that it's not your fault and you should never blame yourself, it is their problem and not yours.

I hope that by the time you read this, you'll be doing what you love and if it's anything like 13 years earlier, you'll be refereeing some damn good rugby, and hopefully setting the stage overseas. Be prepared to seek guidance, be prepared to fail, be prepared to whip out the cards once in a while. Listen to your coaches, don't be complacent, you don't know it all and you need to learn as you go along. You should at least be at ARFU or World Rugby level by now but if not, get to it!

I've said a lot and I hope it resonates when you read this later on. 

Remember, eat, smile, laugh, look after yourself and enjoy life, you've made it this far, so don't bloody stop now!

Just a Typical Juno

June, ha! Where do I begin?! It's the beginning of summer, it feels like an oven AND it's also the rainy season. That's got to be good, no? But don't let me divert you as we are not here to discuss George Bernard Shaw's Pygmalion. I am not Eliza Doolittle and we are not at Ascot, hence we do not need to discuss "the weather and everybody's health"! Though it is one of my favourite musicals and Rex Harrison is divine and so are Julie Andrews and Audrey Hepburn. I read in Julie Andrews' biography and she's mentioned it tons of times, it's interesting how although it clear that Pygmalion is a love story, never does it once mention the word "love", that's British stiff upper lip for you! 

June for me has been amazing, truly. And pretty sucky as well in unequal amounts... 

The 28th May was a pretty unsettling day for me. Now I travel on public transport every day, the public bus service in HK is well, good. Good for speed, for socialisation skills, not quite. See, for those who don't have me on Facebook and don't know, I was discriminated against by a bus driver. It was a horrible thing for me and my parents to deal with and I know that for those with a visible difference, discrimination is par of the course, sadly. The driver indicated all sorts of things. You can read the full post at my dad's blog or you can read it on our Facebook page, The Girl Behind The Face. From a shitty experience, I got some positivity from it. I got so much support from so many people but my parents were the two biggest rocks of all. They jumped into action as soon as I'd stopped crying on the phone and was able to supply them with what info I had. Although I had to dash off for an injection as well, I was treated by my lovely parents to a steak and chips at our local Texan barbecue restaurant, Anthony's. So for a day which was full of grief and love in unequal amounts, that day really showed my just how much people truly care for my family and me. 

I know you're all dying to know, but the rugby refereeing season has come to it sweaty conclusion until August. Which isn't too long a break, but it's enough! A few days after my bus driver incident, I got the surprise of my life when I was awarded at the HK Rugby Referees Annual Dinner for a) turning up to training pretty much every week and b) demonstrating "overcoming life's challenges and adversities". I cannot thank the HK Rugby Referees society enough for their ongoing support. I got my first ever tankard as well :-). For me, it was an acknowledgement by others that I was making some kind of difference. I may not be at the top of the leagues just yet, but it looks like I may be able to start refereeing colts games this coming season and I'm excited! I've been doing minis for the best part of 3 years and while it's been a fantastic learning experience, I have always desired to move up the ranks. As for many a referee, their goal is to reach regional level, before reaching World Rugby denomination and subsequently refereeing the World Cup Final. And I am no different. And that acknowledgement my my fellow referees was like a massive thumbs up that I'm slowly getting better. Thanks all!  

And I won't include the fact the President of the Society had to bring my mug back to Sai Kung for me after I left it on a bar in Wan Chai...cheers Wazza!

I super excited about a test I did a few weeks ago. A DNA gene test called 23AndMe. And believe me a lot of spit was needed for that test! It'll be fascinating to know about what sorts of things I may be susceptible to or at risk for. Though it's pretty damn obvious that I do suffer from Harlequin Ichthyosis! But in all honesty, as someone who was adopted, it'll be interesting to see if my birth family had conditions that I might not be aware of. It will take a few weeks for it to be pressed, but I'll let you know what happens! Thank you to the lovely Dr Lauren Bramley for organizing this, plus looking after my health so well for the past 10+ years, I don't think I'd be as healthy now if I didn't have you, I am just so abundantly blessed to have you in my family's life!

It was also my mummy's birthday this month and my Grandmother was over to celebrate. It was a short 5 days and unfortunately I was at work most days, but I was thankful to be able to spend some time with my grandmother who I don't see very often, maybe once every few years? We had a great Saturday afternoon together spending time together in sportswear shops of all places. Well, I lost my rugby boot bag on my morning commute and ding ding ding, my boots were in there. She very generously offered to buy me a new pair of boots as well as some new trainers.. And I may have introduced her to hydration tablets too...hehe!

What else have I got lined up?

Well, I've got a busy week at work, we are two days away from putting together our annual show called We All. I'm in charge of the media crew, right up my street and on the 29th, we've got a bonding trip to Disneyland. I'm fairly sure my reactions won't be the same as they were when I went with my grandma when I was much younger, but I'm sure it'll be a fun day out!

It's been a long long post..and I need my sleep....zzzzzz

Nos Da! (That's Welsh for Good Night!)

Xx

The Day The World Turned into Nice People...and Tools

Hello dear viewers.

 I have returned to blogging after what appears to be a while. With life, rain, arrogance and #TheGirlBehindTheFace, things have been a bit well, busy!

First things first, my darling PapaRef and MamaRef have launched a website called thegirlbehindtheface.weebly.com

We'd absolutely love if you could take a teensy peek at it and let us know what you think. It's purple, we like purple and there's a link on it called Mui's corner,which should in turn link you to the very website you're viewing now. HELLO NEW PEOPLE! 

Once again social media has played a big (humongous) part in raising awareness. There was a certain group, mentioning no names because name-calling is bad, who were actually quite vicious towards my family and the way we have chosen to live our lives. I commented (through MamaRef's Facebook, no I did not frape her. PapaRef and I stayed up quite late one night to write this together, bonding times, I tell ya!) on the post myself and this is what I had to say. Because if one thing is super clear, I don't take kindly to people who upset my family. I really don't. I'd like to share what I wrote below and I think you'll get the gist of what happened. 

 

"Though it may seem naive that people think I don't see what's been written on social media, I do. And I get screenshots over WhatsApp. And because of The Girl Behind The Face, my family and I have been trawling through Social media in search of groups who may be interested in our story. Interested...or jealous?!

Sparing no details about the fore mentioned group, I thought I'd share some thought on my life. It's dull, but I've figured you'd want to know anyway. Sharing is caring!

I am 22 and a half years old so I am actually an adult with a full time job. Yeah, I had to listen to my folks when they told me I wasn't going to sit around doing nothing all day! 

 This book has been written only since I became an adult with my full agreement and I'm perfectly fine with everything that's been written  and I've also contributed to it myself and shared our website myself. I would think that by me contributing to the book, it means I approve of the book being written. Some think else what. 

Anyways I am very grateful to be adopted because if I wasn't, I would definitely not have the life I  have  and I think that I would not be alive either. The HK Social Welfare department thought I was a lost cause and needed to be shielded away. My parents didn't let that happen thankfully. I think it's okay to be grateful for what you have in life. My parents haven't ever forced that upon me. Gratefulness is something I came to appreciate myself. 

Being adopted is akin to being given a second chance in life. And that is something to appreciate. It's too bad that some people are too hung up on issues to embrace that.

Please take a look our Girl Behind The Face Facebook page and you might understand why I am so grateful. By the way, my mum is also pretty much an adoptee as well. I come from a family where adoption is a big pointer. You'll have to read our book to understand that. 

Because some have been complete tools about our descent into the media, I'm trying to stay calm and collected. It's not easy but social media and publicity dictates that we have to act a certain way. Just saying, we only wrote our book as a result of cyberbullies making me want to commit suicide so quite frankly, I'm offended by all of the assumptions, including that we are only "posting to sell a book" or I'm "too young to understand what's going on"

We do school talks and motivational talks. We did a TEDx talk together. We got a standing ovation. Can you say you have? The purpose of our talks is to raise awareness of visible and invisible differences and cyber bullying as well as helping others. Because my parents never thought of adopting and did so anyway. That's why it's cool that mine was an unexpected adoption. It's the same with an unexpected pregnancy, you can choose to dread it or embrace it. 

Please check out our website and click "like" on our Facebook page as well :-). I also run a blog of my own called The IchthyRef. Because my parents have always helped me focus on the good points in life. You won't find too many rants or such like in my little corner of CyberSpace. You'll find a regular blog about a regular woman of 22 who lives her life and just so happens to have a skin disorder called Harlequin Ichthyosis...and manages to smile and post too many food pics and selfies on Instagram."

 (You're here by the way!)

Now, this made me upset and irritated. I don't feel like I have to explain my adoption. Why should I?! 

Life has been pretty cool thus far. Work has been going pretty swell and I've bagged myself a full time position as opposed to being part time for the best part of the last four years. I'm still in the same company and working at The Rock Foundation has hopefully made me a better person. I work in both teaching as well as media (video-making, photos, hanging on Our Facebook page, etc). I'm grateful for the opportunities that working here has afforded me. Initially I was reluctant about working in special needs but my parents, having had a bit of a sorry time in secondary school, made me get off my backside and made me volunteer. I begrudgingly did so. And I made it into full time...THANKS MUMMY AND DADDY !(yes I still call my parents that...cuteness!)

I also feel like my body is being super good to me right now. After a bit of a saga with my blood test results, I now take vitamin D supplements as well as blood boosters as well as my neotigason. Now mix those together and you have a pretty potent combination if you ain't got ichthyosis. The neotigason is essentially vitamin A. I don't get enough of it. And it makes my skin growth slow down a bit and it's definitely easier to control my bath as the scales don't grow quite so rapidly. The vitamin D is doing me good as well. Builds up my immunity and I swear I've grown a bit more and my hair is literally growing faster and thicker, or maybe that's due to my diet....I'll have to check with my amazing doctor about that!

Speaking of which, I've switched my eating habits slightly and I think that's really helped with my energy levels and skin. Basically, I'm trying to eat more "clean" and by that, as little crap as possible. I've cut out a large amount of carbs as quite frankly, they wear me out. So that's rice out, pasta still in, potatoes and bread are 50/50. I've also found that cutting lactose out more has helped in that I feel less bloated and gunky. But fear not, I have switched to nut and soy milks to get my calcium and oh my god, Kale Chips, light of my life, those sweet things are what I call heaven. Though of course my darling colleague thought they were vile. I can tell he doesn't do wacky health food like I do! Basically, cutting out a large chunk of processed food has really helped. I tried the Paleo thing, it works to an extent but then while I try to follow it, I still throw in the extra carbs if I need it. I'm not super strict about diets but I do care whether they make you feel at least a little bit better and look it too!

I also booked myself in for a deep tissue massage the other day. Yeah, I needed a tiny woman pummeling me! She was teeny! But pretty volatile with her massage strokes. The grunting on her part were hilarious. That being said, she managed to rid a lot of tension in my body which obviously worked because some dear lady at work commented on how relaxed and good I looked. Not sure if it was my outfit or if she meant my tension, but I appreciated the gesture! I can see why people go for sport massage. Deep tissue and sports massages are great and it's always nice to treat yourself to some pain for 45 minutes on a Sunday!

I'm a bit knackered now but I'll write another post on wrapping up the rugby refereeing season soon. By the way, a lovely article was written about me by Girl Talk HQ. I loved it, I did, but I need to reiterate I'm a rugby referee, not a soccer one! And as my man Nigel Owens has said before, "this is not soccer!" God, I love his beautiful Welsh accent, makes the hills come alive! Okay I think it's been a long day, I better get to sleep before sounding like a crazy lunatic!

Mui xxx

Hong Kong...SEVENS!

Hi all! 

It's the IchthyRef again. I apologise for the awful timings of my blogs, but there's simply quite a lot going on. I thought I'd share that with yours truly.

March was a busy month for me. I went to work, I did a few talks with my family regarding The Girl Behind The Face, and of course, it was Hong Kong Sevens! And yet I still found time to sleep...fandabbydozey!

Now I don't know about you, but when it comes to good old fashioned sweet shops, I go weak at the knees and all ape-shit and I cannot resist a bag of jazzies, custard creams and some refresher bars. I'm talking about Mr Simms' Sweet Shoppe. They've now got two stores in Hong Jong, one of which is dangerously close to my office in Wan Chai...I'm in trouble now...

March also saw my family's debut into the newspapers and I was so excited to see myself in the paper, though I was shocked to find that our piece took the WHOLES front page of the Life section of South China Morning Post. People have recognized me around Hong Kong and its a great feeling, strange, but damn, it's great! On the downside, being in the media more has forced me to reconsider where I stand within Social Media. Basically, it's time to behave a bit more. As George Takei has said many a time, "Oh Myyyyyyy!"

I also managed to squeeze in Sevens Week! Now everyone in Hong Kong knows that for a weekend in March, the Sevens take priority over everything else. For me, I got the opportunity to be involved with the Hong Kong Women's Sevens Tournament as well as the Hong Kong Sevens. I decided to forgo the Beach 5s this year, last year I got too sunburnt and my skin was not happy with me! 

The Women's 7s is a two day event and this year, it was held at Kings Park and the Hong Kong Football Club. I've been at both of these locations so much with rugby that I swear I need an honorary membership to the Hong Kong Football Club. I mean, they really are quite amazing, though the non-members food could be improved...a BIG bit!

Day one, I discovered Papua New Guinea are vicious rugby players as I had to coordinate all the match paperwork. This meant I had to sort out the match cards as well as deal with all the Yellow and Red Card forms and hand them to the tournament directors for judiciary. Sounds a bit dull, but actually was quite fun as I started tallying up just how many card sanctions one referee managed to give out. It was fairly warm and I also spent the day making fun of the junior referees. As referees, they become great friends and co-workers, both socially an don field. This helps with morale!

Day two was spent at the Hong Kong Football club where after a bit of persuasion, I got the joy and honour to run as an in-goal touch judge for some of the matches. Yes, 2015 was my international match debut, and my parents  saw  it on live stream! I may have owned in the past of my slow progress up the referees ranks, but being part of the Women's 7s really helped to boost my confidence. I know that with some bloody hard work, it'll happen. I also went up to the HK stadium on Friday to get started on my job for the weekend. I won't go into details but things didn't quite work out as planned and hence I had to turn up on Saturday and pray that something good was going to happen.

Turns out Saturday was probably one I will remember for a long time. I arrived feeling deflated from the previous day. I got given a new access pass and got to do pitch marshaling for the weekend. Basically I had to run and coordinate the teams tunnel entrance. Sounds easy as pie. But probably not! I was usually sent on a hunting expedition to look for the next game's teams. Then I had to follow them back to the changing rooms where I provided a minute by minute countdown before yelling at them to get to the tunnel for a prompt pitch entry. The sun was beautiful, the mobile phone service was as usual, crap but hey, I got to meet the real Village People backstage as well as Eric Rush and David Campese. What a way to spend a Saturday! Also took part in the usual March-Past where effectively, you have to show your face to over 40,000 people and wonder why on earth the referees were given white sticks. And I mean only the referees! I wonder if it's an implication that people think that all refs are blind...though the sexy black Ray bans really did nobody any favors!

Sunday was spent working with the teams again and I managed to get up and close with the Cymraeg lot. They were lovely and I got a few candid selfies...sssshhhhh! Now I was supposed to also do a mini rugby showcase game, but that didn't happen sadly. In retrospect, the worst part was being up at 3.45am to get ready, on.y to be told that I wasn't needed. However, me not doing the game probably was for the best because by that time, I'd been working flat for three days with not much sleep. So it worked in retrospect.

I turned up to work on Monday armed with big cans of Red Bull. I was still found out to be completely exhausted from those 4 days and it took about a week to feel okay again. But despite the exhaustion and sleeplessness, I'd do sevens again in a heartbeat. 

I'm also back on certain medications for my skin. I'm back on Vitamin D capsules after being mercilessly told off by my doctor that my D levels were pathetically low. I'm also back on retinoids for my skin. It's not shown too much yet, but it's supposed to reduce the rapid growth of skin cells. While that's awesome, it means I'll have to face needles again more regularly as the retinoids can occasionally screw with the liver. Grrrrrrr

Apologies for not actually getting a post out in March, but I promise you, you'll hopefully have an April post...in April!

I'm still looking for guest bloggers to write about ichthyosis, daily rants or anything that I may find amusing

Peace out guys!

TheIchthyRef  

That Pass that's so highly sought after!

We do all sorts during March Past!

It's fun to do the Y.M.C.A!

The Cymraeg love

"the Who" otherwise known as the merry band of Fijians

 

Kung Hei Fat Choy, expat behaviour with a dash of Ichthyosis

Living in an Asian city, I, among with a whole lot of other people are lucky enough to celebrate not just one, but TWO New Years! Oh yes we do. The first one is with everyone else and the second one is a massive affair. You know it's Chinese New Year when the firecrackers go off at any given moment, and lion dances are enthusiastically banging their cymbals to dragon dances lining street corners and kicking out evil spirits from houses and workplaces. You also know it's Chinese New Year when the supermarkets and shops are busier than normal, with locals filling up their homes with what I can only assume is food and drink for this festival is also a massive family reunion and eating fest. And it's no secret that sometimes, our bank balances increases too!

Being of the 'local but expat' crew, celebrating it means a break from normal life though the first world problems start flowing in on day one. We don't really do the whole family reunion thing. Grannies, grandpas, aunties and uncles, cousins, in laws, it's incredible how people fit so many into an airing cupboard of a HK flat!!

Well for me at least, with our lot in Hong Kong and the rest of the family in the UK, it makes for a difficult CNY get together! While we watch the lion dances and clap ears over loud firecrackers, nothing much else happens. What do you do?

Living here, people take advantage of that shops are open at almost all hours. They are actually closed on Chinese New Year. Because staff need a holiday too! It's funny, here I'm used to being able to pop 5 minutes (or maybe 15) into town and enjoy a bowl of wonton noodles at say, 10pm if I really wanted to. I remember being either in Vancouver when I wanted something late at night, likely food. I had to slap myself and remind myself that I wasn't in Hong Kong. I have flipping Reeses Peanut Butter cups. Not exactly dinner! I actually don't like them much! Not everywhere in the world is awake 24/7. There are places where places close for whole days and therefore, people have to prepare, I remember being in Germany as a young child, almost appalled when I found out nearly all the shops were closed on a sunday. I just wasn't used to the idea of relaxing and having to do ones shopping and errands  before Sunday. I bet you, hong kong  would have a field day if every shop was closed on a Sunday! But thankfully, this year at least, enough shops were open for HK to not have to ring the Good Samaritans hotline for emotional shop-closure support!!

I want to also touch on HI and hospitals and medications. Now, in Hong Kong, ichthyosis is around, but maybe not very well discussed. I've been on urea cream, petroleum jelly, Vaseline and things like that for a long time. I get all this from the local hospital and if I had to put a price to it, I'd say each time I collect my creams that will take me through maybe 4 months, will cost me just under 10 US dollars. That's a freaking bargain to me. Because my medical care is handled by the HK Public Health Care system, all my  medical care is semi subsidized by the Government. I still pay a small amount, but it doesn't really burn a dent in finances. But because of that, I get a universal kind of petroleum jelly and my medications are not specific only to my condition. Sometimes the quality of my cream sucks because it doesn't feel quite as nice as expensive Vaseline, but for what I pay, I cannot complain! 

I had heard of Aquaphor from people in the States as a choice of cream for helping to soothe ichthyosis. I wanted to get hold of some in Hong Kong to try and see if it would work for me. I can't get this through my hospital for some reason...I tried so hard! Luckily, my dermatologist (lovely lady, she likes me, let's see how that goes in a few years!) knew exactly what I was talking about when I told her I wanted to try AquaPhor. She just said, it's hard to get on the public system. Cue grumpy expat kid behavior. I have scoured American stores throughout HK with some hope of finding Aquaphor, but gave up until this month, I came across it quite by chance in another US store on HK island. It was in a megastore called A and M American Groceries, (whadya know?!)

I saw this along with Cereve cream and knew I had to grab one of the two jars of Aquaphor. I'll deal with Cereve later on! I bounded down the street after buying it (and declaring my wallet bankrupt in the process, it costs double in hk compared to 'Murica). I eagerly opened it up so that I could start using it and let's just say, when I saw it, my first thought was "oh for f$&k's sake!", I thought I bought an overpriced version of Vaseline, which it did resemble. These are my thoughts on Aquaphor:-

- it resembles Vaseline,

- far oilier than what I was used to

- stuck to everything, unlike my other stuff

- expensive as fudge

I have decided though, to continue using my regular stuff but use the Aquaphor more sparingly instead of lashing it on everywhere. I can't deal with creaming windows as well!

I'll be back with more next month! Hurrah! Hurrah! Hurrah!

Mui.

The Girl Behind The Face...and other things

So it's 2015 and its a new year. Should I be happy or groaning? Well I simply cannot answer that question right now. There are a flurry of things happening right now and I'm going to list a few things and a request right here. 

It's been a long time coming but my parents and I are trying to bring a book out to everyone! "The Girl Behind The Face" is a book that explores special needs, acceptance, overcoming trauma in life, resilience and coming out (hopefully!) smiling. The hope is that through this, people will be encouraged by our story and know that it's okay to smile and try to embrace life. 

Of course not everyone is quite able to let go of tough times so easily, but I hope that the book also raises awareness of acceptance of others in an otherwise cruel society. 

The hope is that by both "liking" and "sharing" the Facebook page, we will hopefully find someone who wants to come forward to help bring the book out and into your laps, be it on a Kindle, iPad or paperback. 

Please click "Like" on this following Facebook link!

https://www.facebook.com/GirlBehindTheFace?fref=photo

Don't forget to "share" it as well!

Happy to say that New Years Day rugby went off without a hitch and no known injuries have been reported on my part :-) I must say, getting to do the first match is really fun because you're setting the tone for the rest of the day. And hearing my name over the loudspeakers was also something new. I look forward to one day being 'the one in the middle'! These few months are pretty busy hereonin because there are finals and championship games to be played. Typically the League games and minis festivals are done and dusted just before the HK7s held at the end of March. So lots to do, hopefully I'll be getting right stuck in for those. And hopefully I'll be back in the control tower again this year, causing havoc :-) 

I'm very excited for the end of this month because I have a guest post by my good friend and Harlequin twinsie (she's younger, so technically not twins!), Hunter! Having known her for a long time and literally reconnected by the power of social media and iPhones (we both like Apple products), we are close friends.

 I was at Sailing the other weekend, when Hunter was in a documentary shot some years ago, came up. I was approached by a sailing mum and asked if I was on TV. She was slightly shocked when I said no, because she swore I was in the documentary! Now, I would have been flattered by that, but even though Hunter and I share many similarities, we both sound very different, she has an American accent, whereas as my friend Andie puts it, "whalish" (poor chap refuses to accept there's such a place in the world called Wales, he's Canadian!). Anyhow, accents aside, I think it took that encounter with her on TV for me to realize that actually, people with HI share a lot of similarities. Bone structure, skin(nah, really?) and facial features. I explained to the crowd, now gathered around the flat screen television that yes, I know Hunter and yes, we are similar. I then surprised everyone by Face timing Hunter and had everyone from sailing say hello to her, while at the same time, pointing to her on screen! The mum at Sailing said to me, "if I hadn't turned around, I could have sworn you were Hunter!", I then reminded her that she does sound different to me! You have to work on your British accent, Hunter!

I think it's taken getting back in touch with Hunter to realize that people with Ichthyosis have a tendency to look alike, and I don't just mean that by skin tone, but stature, facial features, etc. I've had people actually come up to me and ask me if I was on American television or on the Jeremy Kyle Show. Because people with HI look alike, I have been mistaken for Hunter or Nusrit. Of course, people know know me well, know full well that I'm not one to go on Jeremy Kyle, because quite frankly, I haven't run off with another man or whatever happens on that show! But that's the stereotypical vision of the man. The oldest sufferer with HI, Nusrit Shaheen WAS on Jeremy Kyle in an episode full of inspirational people and I have to admit, it did make for some good lunchtime YouTube watching...just that one! I was on the bus the other day and a woman with a very strong Northern English accent turned around to me and asked if I was ever on Jeremy Kyle?! The look I gave her was priceless, followed by a funny conversation about the ins and outs of that show.  

I remember quite clearly actually, when I first got in contact with Carly Findlay when I was about 17 or 18. I posted a picture of me in my graduation ball dress (a beautiful lilac Elie Saab-inspired dress, think Mila Kunis' 2011 Oscar dress). Carly commented on it and mentioned that we, as in Carly and I both shared similar bone structure and that we both looked alike. Bear in mind, at this point, I was in no mood to have people telling me I had the same bone structure  as another ichthyosis person. I was still in denial about the whole Ichthyosis thing and convinced that I was like everyone else. I "snapped" back with a snippy comment and got a resounding slap on the wrist by PapaRef for being rude. I apologized and things were left at that. But it was still very uncomfortable being compared to other Ichthyosis sufferers.

But it wasn't until I started chatting and FaceTimeing Hunter when I began to realize, that actually, yes, we do look very similar. Sometimes, when I chat to her, I feel like I'm talking to my mirror image and that's a bit creepy! We both share certain mannerisms and are quite open and laid back. And it helps that our families know each other well too! I'm hoping that in 2016, we will see each other again for the skin conference! 

Okay, I've just added coconut oil to my scalp and it's time to let it settle in! So it's goodnight from me!

Xx