tag:blogger.com,1999:blog-5682762223214560652024-02-07T09:51:53.758-08:00The Adventures of an Itchy RefereeAnonymoushttp://www.blogger.com/profile/18396188637192158196noreply@blogger.comBlogger26125tag:blogger.com,1999:blog-568276222321456065.post-72112298584142885152016-05-01T11:20:00.001-07:002016-05-01T11:20:10.632-07:00Ichthyosis...HELP!<span style="font-family: Arial, Helvetica, sans-serif;">Thank you <a href="http://carlyfindlay.blogspot.hk/" target="_blank">Carly</a> for writing this. I'd like to pride myself
and my family for what we do in our lives. Yes, we are affected by <a href="https://en.wikipedia.org/wiki/Harlequin-type_ichthyosis" target="_blank">Harlequin Ichthyosis</a>. But our story doesn't stop there. Last year, and I'm sure I will
repost anyway, I went through two of the most horrific experiences in a long
time. And that was because I have HI. Raising awareness is everything. Please read Carly's piece <a href="http://carlyfindlay.blogspot.hk/2016/05/ichthyosis-awareness-month-2016-we-must.html" target="_blank">here</a>.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;"><o:p> </o:p>But don't just let it stop at a skin disorder. Look at the
outer box. Look at people with a visible difference and their job success
rate. I am lucky that I work in an inclusive office. But I know that not
everyone is as blessed as me. I may have a skin disorder but upstairs, I'm just
me. A regular human being with a penchant for rugby activities and doing
completely inappropriate things at the wrong time. What people and employers
should ideally understand, is that we are just as capable as the person next to
us. True story.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;"><o:p> </o:p>I work at an NGO as a teacher for people with special needs.
And my mum found me that job when I was 18. 5 years later, I am now in charge
of creative digital media like photography and video production. I am also <span lang="EN-US" style="mso-ansi-language: EN-US;">a co-coordinator for International
Service Development, effectively communicating with clients to promote our
work. This job is hard. And I can sometimes be found in the office on a
Saturday catching up. And my phone is how I answer emails from everyone work
related. Not easy. But with the support of colleagues, I have made a mark. And
guess what? No one realizes on the phone that I have Ichthyosis. Its only when I
meet them in person and even then, I am welcomed.<br /><o:p></o:p></span><o:p> </o:p></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;">Sharing photos and information is a vital tool in our world.
But like Carly, i try to exercise caution. I am aware of what I share, will not
always be met with grace and praise. I am aware that no everyone will be thrilled
to see photos of feet and raw bloody skin. If you are unsure of what on earth
is happening, its cool to post questions, but post the photos to people through
their inbox<span lang="EN-US" style="font-family: "MS 明朝"; mso-ascii-font-family: Cambria; mso-ascii-theme-font: minor-latin; mso-fareast-font-family: "MS 明朝"; mso-fareast-theme-font: minor-fareast;">…</span>if they want to see. Oversharing
has been a massive learning curve for me. And for me and my life, I only share
what I want others to see. I have plenty of things I really don<span lang="EN-US" style="font-family: "MS 明朝"; mso-ascii-font-family: Cambria; mso-ascii-theme-font: minor-latin; mso-fareast-font-family: "MS 明朝"; mso-fareast-theme-font: minor-fareast;">’</span>t
need the world to know or see. Its all about your own privacy.</span><br />
<br />
<span style="font-family: Arial, Helvetica, sans-serif;">Last year, and I’m sure FB will remind me eventually, I had
a pretty horrific time with <a href="http://rogthomasblog63.blogspot.hk/2015/05/why-write-book-because-of-recurring.html" target="_blank">Bus Discrimination</a> and <a href="http://rogthomasblog63.blogspot.hk/2015/09/visible-difference-is-not-source-of.html" target="_blank">shock videos</a>. It was
absolutely horrible to deal with and it was amazing how so many people came
together to support my family through it all. BUT...and I say this with
absolute caution…</span><br />
<br />
<span style="font-family: Arial, Helvetica, sans-serif;">People with visible differences or special needs will sadly
be a target for trolls. I was surrounded by so many wonderful people who
offered their love and support, both privately and publicly during that time.
BUT, I know that not everyone has access to that. Organisations who advocate
for us, should understand that when YOU are the targeted party, you feel
utterly helpless and devastated that you’ve been reminded of your differences.
YOU deserve the best support available. There is no point in simply saying that
you’ve reported the incident and waiting on an action. Because it doesn<span lang="EN-US" style="font-family: "MS 明朝"; mso-ascii-font-family: Cambria; mso-ascii-theme-font: minor-latin; mso-fareast-font-family: "MS 明朝"; mso-fareast-theme-font: minor-fareast;">’</span>t
help you emotionally, you are basically, screwed.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;">It makes all the difference to even receive a private
inbox message, just checking in and asking how you are holding up. </span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">And I wish
that organisations would recognise that if you are to help through some
horrible experience, personalization makes all the difference.</span><br />
<br />
<span style="font-family: Arial, Helvetica, sans-serif;">I absolutely stand by what Carly says when she hopes that
organizations that support us should look at the bigger picture. We are not
simply looking at a skin disorder. Oh no. As you may have seen with our Facebook
page, <a href="https://www.facebook.com/GirlBehindTheFace" target="_blank">The Girl Behind The Face</a>, we look at the bigger picture. We look at how
our lives are affected.<span style="mso-spacerun: yes;"> </span>Ichthyosis is
not only about pouring money into research, which saddens me, because I know
that it will take a while before much headway is made into a cure. Ichthyosis
is life, its dealing with daily life, it’s dealing with bullying, job
prospects, the whole shebang. So if we could get more life skills from the
organizations, that would be amazing, it embraces everyone, better than trying
to suggest things that not everyone in the world has access to.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;"><o:p> </o:p>People have been living with Ichthyosis and visible
difference for a long time. Granted, I’m not the most clued up because I’ve
tended to focus what’s in front of me. But, you look around the internet and you
see that adults have come before us with Ichthyosis, bringing with them a whole
wealth of knowledge. Granted, if anyone asks me, go to our Facebook, it’s much
more informative than I will ever be <span style="font-family: Wingdings; mso-ascii-font-family: Cambria; mso-ascii-theme-font: minor-latin; mso-char-type: symbol; mso-hansi-font-family: Cambria; mso-hansi-theme-font: minor-latin; mso-symbol-font-family: Wingdings;"><span style="mso-char-type: symbol; mso-symbol-font-family: Wingdings;">J</span></span>.
So anyone who reads this, utilize people who have been through it all before,
it’s a lot more informative than Wikipedia will ever be.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><o:p> </o:p>I have, in this day and age, been inclined to approach
others in my network for advice on managing my skin condition. I trust their
judgement because it is tried and tested. And I have also learnt, what works
for one, may not work for someone else.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;"><o:p> </o:p>Having grown up within the enclaves of a diverse <a href="https://en.wikipedia.org/wiki/Hong_Kong" target="_blank">Hong Kong</a> (China
by the way), I have been afforded so many opportunities by so many. Whilst I
have a day job, I also terrify myself sometimes with the fact that I literally
don’t slow down. With refereeing duties, events, sail volunteering, along with
helping to raise our profile in the world, I really don’t stop. But what I
have, is a result of networking, which not everyone has access to. And for
organizations to provide links and networking, hopefully people will be more
confident in presenting themselves out to the world.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;"><o:p> </o:p>I have been involved in enough rugby events to know that I
am in a community that accepts people, no matter what they are facing, be it a
disability or something else. I have been afforded some brilliant opportunities
by way of the fact that organizers and the head of referees realise that yes, I
have a medical condition, but that doesn’t stop me from being involved in such
a great game. My mind is completely on the ball, hence why I have been able to
be involved in premiership scoring and sin bin documentation.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;"><o:p> </o:p>As my refereeing hero <a href="https://twitter.com/Nigelrefowens" target="_blank">Nigel Owens</a> has said many a time,</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;">"Rugby is without a doubt the greatest team sport on the pitch, but without a
doubt, the greatest team sport off it as well".</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">Just because I have been afforded brilliant opportunities, it is my hope that more and more people will have just the same or even better experiences than myself. And if Ichthyosis Awareness Month can help others gain more confidence, awesome!</span><br />
<br />
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<!--EndFragment-->Anonymoushttp://www.blogger.com/profile/18396188637192158196noreply@blogger.com2tag:blogger.com,1999:blog-568276222321456065.post-78641064573317599682016-03-04T22:30:00.001-08:002016-03-04T22:30:58.276-08:00My Fitness is Shite - My Perspective<span style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">Put it all into perspective and we can all agree that the only reason I look like I'm relatively fit is all down to refereeing, running after people and the general loathing of sitting still. And just because you have a high metabolism doesn't excuse being lazy. </span><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">Living with Ichthyosis presents its challenges and when it comes to health and wellness, it's playing with fire. You try things and you either fail or succeed. What works for some, won't work with others. What I hope to write down here is a breakdown of the way I work around my fitness and its obstacles. By the way, I am no doctor, but simply describing what works for me. </div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">When it comes to running, I'm a sprinter. I don't like short distances very much and with long distances, it's a lot easier to pace myself and work my way around. As a rugby referee who does an insane amount of quick turns to keep up with the pace of the game, it's a work in progress. Our referees fitness trainer is helping me master the turns with cleaner efficiency without the fear of damaging my knee, which lets be honest, is probably in a terrible state as I write this! </div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">I haven't always been this fit. In school I didn't really take part in PE lessons much for a couple of reasons, </div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">- the weather was playing mind games (remembering HK is a hot and humid wasteland)</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">- I was repeating my AS Level Art qualification (we don't talk of this!)</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">- I just didn't really get my arse in gear</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">I think it was only when I joined the referees fraternity at about 16/17/18 when I realized that if I wanted to get better games and move up the ranks, I was going to need to up the ante and get with the programme. I think it did slightly shock my ex PE teachers when news got out that the lazy got got her arse in gear and was caught sprint around pitches. </div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">One big thing about Ichthyosis is the risk of brittle bones and osteoporosis. This is what kind of got in the way of things. But with the help of my wonderful family doctor, we started working toward making my bones stronger with vitamins and lots of good stuff. Because of this, I can worry less about my bones shattering and more about my real goals. </div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">So back to what I do. </div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">So Wednesday nights, we have fitness training where believe me, the bar is set pretty high by our trainer Wai from Pinnacle. This season, I don't think I've actually come away from training without cursing him from under my breath. But for all its worth, the drills, the circuits, the pitch laps, timed runs and more, it's all paid off as keeping up with the players and their 12 year old pace is not nearly as painful as it once was. I also honestly believe that training with like minded individuals really ups the motivation levels and it's equally important to work with someone who you have a good connection with. I've been lucky so far in having some great trainers who have yelled, cajoled, encouraged and dissed me as I train. Character building I tell ya!</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">If I happen to have a good week where I'm back in Sai Kung in the early-ish evenings, I like to try and get myself on a road run from our sleepy little village (some may argue that point) and up a couple of slopes and roads which ultimately leads me into Sai Kung Town. This is a roughly 4km-ish venture and is a good way to pass time while the washing machine load does its thing. Bear in mind, this isn't a full on sprint, but a steady run. I would never sprint up a steep slope where I live...I walk up those parts before gathering the pace again for the flatter parts. This, depending on my pace can be done in max 45 minutes in cool weather. But we will revisit this in the summer. </div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">I also wear a FitBit flex. I like to wear something that counts my steps daily and makes sure that I am on my feet often. The recommended step target is 10,000 steps, but I push my buttons and aim for 13,500 steps at least! I find that it gives me satisfaction that I've not been sitting on my lazy arse at work all day when I feel that vibration on my wrist telling me I've hit my goal for the day. </div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">Nutrition and hydration is also key to a decent level of fitness. Now I'd like to think I'm pretty disciplined when my eating habits are concerned but here we go. </div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">The average Ichthyosis person should ideally be downing roughly 10,000 calories a day. And to think that the average person usually eats 2500 a day. That just scares me shitless. And no, I don't hit the 10k mark. My wallet would hate me so much. I think that in reality, most of my wages go on food. Yeah. I know. </div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">As with most humans who work, the mentality is that at the beginning of the month, you eat well because your wallet has been restocked. But by the end of it, well, instant rice noodles are right up there. </div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">I eat a fairly healthy feed which all depends on my activities for the day. But as a base, I'm not overly keen on processed foods but sometimes, needs must. But some of my favorite things to eat and drink include, </div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">Sushi, </div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">kale chips or raw veggie chips</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">meat, </div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">rice (not the sticky kind you find in a rice box) </div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">Mixed fruit and veg Juices</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">Kombucha </div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">Nuts</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">Water</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">Anything that packs a major punch of flavour. It's dull eating something that's not colourful or full of flavour. </div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">I'm a big fan of whole foods as I have learned, rather belatedly. that you are what you eat. And while things like quavers, pork scratchings and all that processed comfort food is not the most nutritionally packed thing to eat, I won't hesitate to eat those too, in moderation. That's the thing, if you look after yourself, I don't see why you can't treat yourself every now and then. If I want to have a bag of crisps or sweets, I will, because I know that in moderation, I'm not killing my body completely. </div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">If I've been to training or I've done a morning of refereeing, my first thing to do afterwards is shove some food into my mouth as I refuse to eat two hours before heavy intensity workouts. And the sight of your last meal on the pitch can't be a pleasant sight! But I might throw in a protein shake or some form of liquid and down that, just to keep me going for long enough. I really have a love hate relationship with protein powder as it's hard to find an affordable one which tastes okay but doesn't have the crap that normally goes into them. I'm a fan of the Vega protein range which is plant based. If I'm refereeing, I like to mix that with a peach flavoured Isoflex protein powder. So I'm getting an absolute protein punch. It tastes vile of course, but when it packs in over 30g of protein and holds me for an entire morning, I shan't complain! </div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">Hydrating is a massive thing for me as well. It's not uncommon for me to be carrying around a big bottle of water. When I do remember to put in, I absolutely love my 1ltre Camelbak Chute bottle which despite the abuse I put it through, somehow still looks amazing. But for me, drinking liquids for me is a big thing. I'm a sucker for coconut water after training. But as I mentioned before, if needs must, I will also drink sugary electrolyte drinks to rebuild my energy. I'm a fan of Lucozade energy and Pocari Sweat. </div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">And no I don't run barefoot. For a road run or when I forget my boots at training (shock horror!) I own a pair of Asics Gel Nimbus 16s bought for me by my lovely grandma last year. Yes they're expensive, but they have offered me great cushioning and support for my heels as I run while digging (don't ask). For boots when I'm refereeing or on turf or a grass pitch, it's not difficult to find me in purple zebra patterned X-Blades. Comfortable, but light, those are my babies. </div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">Now, dear folks, what I've written today is what works for me. What works for one, may not work for someone else. I'm constantly learning about my own limitations and what works well. One thing in particular is the foam roller and deep tissue ball. I'm fairly high pain threshold and actually love the feeling of further abusing myself after fitness sessions. But with others, their skin could break with the spikes of the roller or deep tissue ball. </div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">I wanted to write this because as someone with Ichthyosis and a somewhat compromised body, I wanted to throw it out there that with the right balance and structures, it's certainly possible to embark on a fit life. It's all about common sense, motivation and a desire to be the best you can be. And talking to professionals works a charm as well!</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">AN: I've included brand name products in this post. Not because I represent them (I don't), but because these are the products I know, love and trust. And if I get a request to be a brand rep, awesome! </div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div>Anonymoushttp://www.blogger.com/profile/18396188637192158196noreply@blogger.com3tag:blogger.com,1999:blog-568276222321456065.post-46594718070240961902016-02-10T01:59:00.001-08:002016-02-10T01:59:10.485-08:00Do I look like I know What I'm Doing?<div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">No, most of the time, I find myself hopping around like a headless chicken. But that's beside the point of writing this today. So it's been a while since I've decided to write, but I might as well say Happy Chinese New Year, or Kung Hei Fat choi. </div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">It's been a while and lots has gone on since December. I turned 23 (sh't), it was Christmas (yay), I started off the new year on a roll and so far, it's gone according to plan. Well the weather has been Baltic recently but we can deal with that. </div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">My post today is just a bit of a ramble if I'm honest. I'm quite excited about the state of my washing machine. Given the fact that I have never actually cleaned it before and when you have Ichthyosis, your washing machine is likely to break down a couple of times. But but but, after being told off about the state of my washing machine, I walked into the nearest hardware store and bought 2 litres of Swipe. Multipurpose cleaner which happened to also pick up about 5 years worth of well, crap quite frankly. I also bought some kind of Japanese washing machine cleaner and oh my god, I have never seen such a sparkly shiny drum after it did it's work :-). The liquids I used were a bit potent in strength, but given my plain and simple neglect in the past, it was needed to do its job. As I write this, it's currently going through a last cycle before I start loading it again tomorrow. It's days when I'm thankful for public holidays since it means I can actually do things I've been supposed to do for the past year (or 5). </div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">Chinese New Year in HK was certainly newsworthy. There was a riot down in Mong Kok, the land of smelly tofu, cheap markets selling fake branded items and a tourist Mecca. There were a couple of illegal hawkers doing their thing, but the popo weren't too impressed and nor were the hawkers themselves after being found out. But anyways, cutting to the chase, it pains me to see a part of Hong Kong absolutely thrashed to the point that the train system decides to skip their station stop. I live quite away from Mong Kok, but I know the area as my school was nearby. To see people chucking bins at people and bricks being thrown. I think to myself, "what the hell happened?" This isn't London, this is Hong Kong. But I hope that out of this, people realize that if you do something illegal, guess what, prepare to get into some bother, it's bound to go down badly. </div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">So I now flitter back to the all time entertainer, the rugby :-)</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">I had the opportunity to work at the Highlanders vs Racing 92 game when they were in Hong Kong recently. I was on the scores with my mate Harry, who just happens to be a better referee than myself, I'm so not jealous (hides in corner). Anyhow, the match took place in Chai Wan, some place in a place called Siu Sai Wan, or as I like to call it, the middle of buttf*cknowhere. It was an awesome game though with beautiful weather and the result of it all was that I ended up abandoning my Welsh roots for that night and posed for a photo with Dan Carter, lovely bloke by the way, but he's Kiwi :-). But I further redeemed myself after snagging a selfie with Mike Phillips during the opening match of the 6 Nations, France vs Italy. Classy times in the Sportsmans Bar of the Hong Kong Football Club. </div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">It's been short and sweet, but I'll be back when I have a bit more inspiration up my sleeve and the novelty of a shiny washing machine has worn off. </div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">Mui xxx</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj7gdphLXCBmHUaoFU63JyHlUmvqU0XHXl4moRK3XVwEvFLSV4v1yplPLFFi0E9EpZeCsGkx1QHFC__sYHM2xvc_tk2aUXG4MDrLRG4oLQ9P2CUd4z0OAv0kZAdyd9CP07JnRCLnJ3571k/s640/blogger-image-319026842.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj7gdphLXCBmHUaoFU63JyHlUmvqU0XHXl4moRK3XVwEvFLSV4v1yplPLFFi0E9EpZeCsGkx1QHFC__sYHM2xvc_tk2aUXG4MDrLRG4oLQ9P2CUd4z0OAv0kZAdyd9CP07JnRCLnJ3571k/s640/blogger-image-319026842.jpg"></a></div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhSU8pQ0qbl3nKWSFoYSxB9hfVA0L26eVxHMYzZq2lX1z_JFS2L4zXHommwNFB4MG3O2OpHKDGs4BnKwpPm-4jiDTVLu8FIGxuWSKFkwCyBNw2rB22foac03t-SsQ7_C9so0ypk7pAw02Y/s640/blogger-image--161267224.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhSU8pQ0qbl3nKWSFoYSxB9hfVA0L26eVxHMYzZq2lX1z_JFS2L4zXHommwNFB4MG3O2OpHKDGs4BnKwpPm-4jiDTVLu8FIGxuWSKFkwCyBNw2rB22foac03t-SsQ7_C9so0ypk7pAw02Y/s640/blogger-image--161267224.jpg"></a></div><br></div>Anonymoushttp://www.blogger.com/profile/18396188637192158196noreply@blogger.com1tag:blogger.com,1999:blog-568276222321456065.post-59137833772208248302015-10-30T19:57:00.001-07:002015-10-30T19:57:49.985-07:00Hellew....<p class="MsoNormal" style="margin: 0in 0in 0pt; padding: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0); font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">It's been a while (a long while) but I'm back!</span></p><p class="MsoNormal" style="margin: 0in 0in 0pt; padding: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br>As some, or most of you know, we have a Facebook page out called The Girl Behind the Face <a href="https://www.facebook.com/GirlBehindTheFace">https://www.facebook.com/GirlBehindTheFace</a> 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. <o:p></o:p></span></p><p class="MsoNormal" style="margin: 0in 0in 0pt; padding: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"> <o:p></o:p></span></p><p class="MsoNormal" style="margin: 0in 0in 0pt; padding: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">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. <br><br>We've also got a website too, <a href="http://thegirlbehindtheface.weebly.com/">http://thegirlbehindtheface.weebly.com</a> Please check it out. <o:p></o:p></span></p><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br>See you on Facebook!</span><br style="font-family: 'Times New Roman', sans-serif; font-size: 16px; -webkit-text-size-adjust: auto;"><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">:-)</span></div>Anonymoushttp://www.blogger.com/profile/18396188637192158196noreply@blogger.com2tag:blogger.com,1999:blog-568276222321456065.post-77896798222531867392015-08-02T08:35:00.001-07:002015-08-03T09:27:02.362-07:00Hunter's Guest Post...Yep, She's Done it!This Month's blog post comes from both Hunter Steinitz and myself, hope you enjoy it!<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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!<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh5jbaSFWnAgYjuXJnDkygvx_4Jsz032R3c89UstCOIioqEYk9cwjtA-jgSMYSNUl5JllMeBF-UNzB_mZHibZMLEMe2Y7UM61vkIXTSV5mZe-0boDfD8UL_WCNwIaw1KX4xS_QoWQaD7TA/s1600/FB+pic.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="230" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh5jbaSFWnAgYjuXJnDkygvx_4Jsz032R3c89UstCOIioqEYk9cwjtA-jgSMYSNUl5JllMeBF-UNzB_mZHibZMLEMe2Y7UM61vkIXTSV5mZe-0boDfD8UL_WCNwIaw1KX4xS_QoWQaD7TA/s320/FB+pic.jpg" width="320" /></a></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
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!</div>
<br />
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.<br />
<br />
<i><b>Hunter Says:</b></i><br />
<i><b><span style="color: red;"><br /></span></b></i>
<br />
<div class="MsoNormal" style="text-indent: 36.0pt;">
<span lang="EN-US" style="font-size: 12.0pt; line-height: 107%;"><i><span style="color: red;">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.<o:p></o:p></span></i></span></div>
<div class="MsoNormal" style="text-indent: 36.0pt;">
<span lang="EN-US" style="font-size: 12.0pt; line-height: 107%;"><i><span style="color: red;">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.<span style="mso-spacerun: yes;"> </span>But my lesson in
communication doesn’t stop there. <o:p></o:p></span></i></span></div>
<div class="MsoNormal" style="text-indent: 36.0pt;">
<span lang="EN-US" style="font-size: 12.0pt; line-height: 107%;"><i><span style="color: red;">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.<span style="mso-spacerun: yes;"> </span>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. <o:p></o:p></span></i></span></div>
<div class="MsoNormal" style="text-indent: 36.0pt;">
<span lang="EN-US" style="font-size: 12.0pt; line-height: 107%;"><i><span style="color: red;"><br /></span></i></span></div>
<div class="MsoNormal" style="text-indent: 36.0pt;">
<span lang="EN-US" style="font-size: 12.0pt; line-height: 107%;"><i><span style="color: red;">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.</span></i></span><br />
<span lang="EN-US" style="font-size: 12.0pt; line-height: 107%;"><span style="color: red;"><i><br /></i></span>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. </span><br />
<span lang="EN-US" style="font-size: 12.0pt; line-height: 107%;"><br /></span>
<span lang="EN-US" style="font-size: 12.0pt; line-height: 107%;"></span><br />
<div style="text-indent: 0px;">
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 :)</div>
<div>
<br /></div>
<span lang="EN-US" style="font-size: 12.0pt; line-height: 107%;"><br /></span>
<span lang="EN-US" style="font-size: 12.0pt; line-height: 107%;">And the numerous iMessages, FaceTimes, Skypes and Facebook messages are just gonna keep coming!</span><br />
<span lang="EN-US" style="font-size: 12.0pt; line-height: 107%;"><br /></span>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiJ2RszL6NBPl5k5zRYjsQniOTRfuAM-ZkgYHFxFdL6kLMH6HqWRuTtH1GtsAfczHF4leoblgndd7GYrbCErogtk6kOrgHnIP6C1D9SwYRUN1Nm4FlKvwu6R_cUjWLYkS6Gxn4LnvDx87Y/s1600/10934006_875976005786407_629289311943612426_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="270" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiJ2RszL6NBPl5k5zRYjsQniOTRfuAM-ZkgYHFxFdL6kLMH6HqWRuTtH1GtsAfczHF4leoblgndd7GYrbCErogtk6kOrgHnIP6C1D9SwYRUN1Nm4FlKvwu6R_cUjWLYkS6Gxn4LnvDx87Y/s320/10934006_875976005786407_629289311943612426_n.jpg" width="320" /></a></div>
<span lang="EN-US" style="font-size: 12.0pt; line-height: 107%;"><br /></span></div>
<div class="MsoNormal">
<div style="text-align: center;">
<span lang="EN-US" style="font-size: 12.0pt; line-height: 107%;"><span style="mso-tab-count: 1;"> 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!</span><o:p></o:p></span></div>
</div>
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Anonymoushttp://www.blogger.com/profile/18396188637192158196noreply@blogger.com4tag:blogger.com,1999:blog-568276222321456065.post-33045433414258940002015-06-25T07:43:00.001-07:002015-06-25T19:34:14.562-07:00To Future Me<div style="-webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">
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. </div>
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<span style="-webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">Dear Future Me,</span><br />
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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. </div>
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<br /></div>
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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. </div>
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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.</div>
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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. </div>
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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. </div>
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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.</div>
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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!</div>
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I've said a lot and I hope it resonates when you read this later on. </div>
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Remember, eat, smile, laugh, look after yourself and enjoy life, you've made it this far, so don't bloody stop now!</div>
Anonymoushttp://www.blogger.com/profile/18396188637192158196noreply@blogger.com6tag:blogger.com,1999:blog-568276222321456065.post-66712292234442675332015-06-22T06:20:00.001-07:002015-06-22T06:27:19.878-07:00Just a Typical Juno<div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">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! </div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">June for me has been amazing, truly. And pretty sucky as well in unequal amounts... </div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">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. </div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">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! </div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">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!</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">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!</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">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!</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">What else have I got lined up?</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">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!</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">It's been a long long post..and I need my sleep....zzzzzz</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">Nos Da! (That's Welsh for Good Night!)</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">Xx</div>Anonymoushttp://www.blogger.com/profile/18396188637192158196noreply@blogger.com3tag:blogger.com,1999:blog-568276222321456065.post-26868451569210117732015-05-21T06:58:00.001-07:002015-05-21T17:28:56.592-07:00The Day The World Turned into Nice People...and Tools<div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><span style="background-color: rgba(255, 255, 255, 0);">Hello dear viewers.</span></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><span style="background-color: rgba(255, 255, 255, 0);"><br></span></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><span style="background-color: rgba(255, 255, 255, 0);"> 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!</span></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><span style="background-color: rgba(255, 255, 255, 0);"><br></span></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><span style="background-color: rgba(255, 255, 255, 0);">First things first, my darling PapaRef and MamaRef have launched a website called thegirlbehindtheface.weebly.com</span></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><span style="background-color: rgba(255, 255, 255, 0);">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! </span></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><span style="background-color: rgba(255, 255, 255, 0);"><br></span></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><span style="background-color: rgba(255, 255, 255, 0);">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. </span></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><span style="background-color: rgba(255, 255, 255, 0);"> <br><p id="docs-internal-guid-8863f945-57fb-1aa8-0672-08f71254a850" dir="ltr" style="margin: 0pt 0px; padding: 0px;">"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?!</p><p id="docs-internal-guid-8863f945-57fb-1aa8-0672-08f71254a850" dir="ltr" style="margin: 0pt 0px; padding: 0px;"><br></p><p id="docs-internal-guid-8863f945-57fb-1aa8-0672-08f71254a850" dir="ltr" style="margin: 0pt 0px; padding: 0px;">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!</p><br><p dir="ltr" style="margin: 0pt 0px; padding: 0px;"><span style="text-decoration: none; vertical-align: baseline;">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! </span></p><p dir="ltr" style="margin: 0pt 0px; padding: 0px;"><span style="text-decoration: none; background-color: rgba(255, 255, 255, 0);"><br></span></p><p dir="ltr" style="margin: 0pt 0px; padding: 0px;"><span style="text-decoration: none; background-color: rgba(255, 255, 255, 0);"> 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. </span></p><p dir="ltr" style="margin: 0pt 0px; padding: 0px;"><span style="text-decoration: none; background-color: rgba(255, 255, 255, 0);"><br></span></p><p dir="ltr" style="margin: 0pt 0px; padding: 0px;"><span style="text-decoration: none; background-color: rgba(255, 255, 255, 0);">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. </span></p><p dir="ltr" style="margin: 0pt 0px; padding: 0px;"><span style="text-decoration: none; background-color: rgba(255, 255, 255, 0);"><br></span></p><p dir="ltr" style="margin: 0pt 0px; padding: 0px;"><span style="text-decoration: none; background-color: rgba(255, 255, 255, 0);">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.</span></p><p dir="ltr" style="margin: 0pt 0px; padding: 0px;"><span style="text-decoration: none; background-color: rgba(255, 255, 255, 0);"><br></span></p><p dir="ltr" style="margin: 0pt 0px; padding: 0px;"><span style="text-decoration: none; background-color: rgba(255, 255, 255, 0);">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. </span></p><p dir="ltr" style="margin: 0pt 0px; padding: 0px;"><span style="text-decoration: none; background-color: rgba(255, 255, 255, 0);"><br></span></p><p dir="ltr" style="margin: 0pt 0px; padding: 0px;"><span style="text-decoration: none; background-color: rgba(255, 255, 255, 0);">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"</span></p><br><p dir="ltr" style="margin: 0pt 0px; padding: 0px;"><span style="text-decoration: none; vertical-align: baseline;">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. </span></p><br><span style="text-decoration: none; vertical-align: baseline;">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."</span></span></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><span style="background-color: rgba(255, 255, 255, 0);"><span style="text-decoration: none; vertical-align: baseline;"><br></span></span></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><span style="background-color: rgba(255, 255, 255, 0);"><span style="text-decoration: none; vertical-align: baseline;"> (You're here by the way!)</span><br><br id="FontBreak">Now, this made me upset and irritated. I don't feel like I have to explain my adoption. Why should I?! </span></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><span style="background-color: rgba(255, 255, 255, 0);"><br></span></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">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!)</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">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!</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">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!</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">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!</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">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!</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">Mui xxx</div><div><br></div>Anonymoushttp://www.blogger.com/profile/18396188637192158196noreply@blogger.com1tag:blogger.com,1999:blog-568276222321456065.post-51313574695219514922015-04-15T10:25:00.001-07:002015-04-15T10:27:42.719-07:00Hong Kong...SEVENS!<span style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">Hi all! </span><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">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.</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">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!</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">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...</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">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!"</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">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! </div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">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!</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">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!</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">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.</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">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!</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">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.</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">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. </div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">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</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">Apologies for not actually getting a post out in March, but I promise you, you'll hopefully have an April post...in April!</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">I'm still looking for guest bloggers to write about ichthyosis, daily rants or anything that I may find amusing</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">Peace out guys!</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">TheIchthyRef </div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi9cNTxpd68KjdqOLGtQluBEpZBelkoF6RnTsNN0nogukvu-Vdo8zUJF3e7V1FIpEX_ZK1L_IFG8-buAahg-ngAd-oA2NmLN8P4ROTj2dPvackRtxWucaoC4iTZrPTalHhv5baPeLdZUF0/s640/blogger-image-1640499710.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi9cNTxpd68KjdqOLGtQluBEpZBelkoF6RnTsNN0nogukvu-Vdo8zUJF3e7V1FIpEX_ZK1L_IFG8-buAahg-ngAd-oA2NmLN8P4ROTj2dPvackRtxWucaoC4iTZrPTalHhv5baPeLdZUF0/s640/blogger-image-1640499710.jpg"></a>That Pass that's so highly sought after!</div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhUVlBHT2UTH0Iwrfnmlhqaz_EUILcrO3GHVr-O_D8NqdgNQsnLD9dNIbO67k4-6G7LZVo9VfGTL9l8KXs-qW38PMAoHpsLvzMQSzo3pkcDaNuquu-P4i0gBtacfeQ3JK_0l633FFRjpfA/s640/blogger-image-1907443607.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhUVlBHT2UTH0Iwrfnmlhqaz_EUILcrO3GHVr-O_D8NqdgNQsnLD9dNIbO67k4-6G7LZVo9VfGTL9l8KXs-qW38PMAoHpsLvzMQSzo3pkcDaNuquu-P4i0gBtacfeQ3JK_0l633FFRjpfA/s640/blogger-image-1907443607.jpg"></a>We do all sorts during March Past!</div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgeB4UtO8Ktym9gSQi1PlXew2IDc2WLqZdmg37y5X5Q_25SudOkbCmcnKvbV6t4gAu-SiE1RI1spvY7IWvS_tof7FFrXESaM128j7UnMkS_r8SnSSdwEZZU3go7OmtBgU3arVT6__49Rxw/s640/blogger-image-1315024639.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgeB4UtO8Ktym9gSQi1PlXew2IDc2WLqZdmg37y5X5Q_25SudOkbCmcnKvbV6t4gAu-SiE1RI1spvY7IWvS_tof7FFrXESaM128j7UnMkS_r8SnSSdwEZZU3go7OmtBgU3arVT6__49Rxw/s640/blogger-image-1315024639.jpg"></a></div><br></div>It's fun to do the Y.M.C.A!</div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg4p-Om64QpUtWi7FNt-KP8hvs1MYjW3xPS7vpuFR23tBnFZcQAUobL6P8ahoMFMsfbDXYtpYt_ty4etml4KaJpC7XgQVyyzp8P0ouP8ZwL9QVnjOOAK4o6Cxv1Yzs0HFc_vDikSOFuN3Y/s640/blogger-image--1532354511.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg4p-Om64QpUtWi7FNt-KP8hvs1MYjW3xPS7vpuFR23tBnFZcQAUobL6P8ahoMFMsfbDXYtpYt_ty4etml4KaJpC7XgQVyyzp8P0ouP8ZwL9QVnjOOAK4o6Cxv1Yzs0HFc_vDikSOFuN3Y/s640/blogger-image--1532354511.jpg"></a></div>The Cymraeg love</div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEirkov8Bj6lxJCVhW_w_AsjgYMIkk7mJrc0_8tH96v8vQSacdRLj0g2ZUSFAWswJTNSnA5iA6BJq2Gqt9iDWerSVQeEiEdRe5SOQwNc2rfCoup8Sq5PUnoy4z7BcKFxts8MR4FlaLbGo8o/s640/blogger-image--1047461861.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEirkov8Bj6lxJCVhW_w_AsjgYMIkk7mJrc0_8tH96v8vQSacdRLj0g2ZUSFAWswJTNSnA5iA6BJq2Gqt9iDWerSVQeEiEdRe5SOQwNc2rfCoup8Sq5PUnoy4z7BcKFxts8MR4FlaLbGo8o/s640/blogger-image--1047461861.jpg"></a></div>"the Who" otherwise known as the merry band of Fijians</div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"> </div><br></div>Anonymoushttp://www.blogger.com/profile/18396188637192158196noreply@blogger.com1tag:blogger.com,1999:blog-568276222321456065.post-27790955868137561732015-03-10T07:12:00.001-07:002015-03-10T07:13:15.541-07:00Kung Hei Fat Choy, expat behaviour with a dash of Ichthyosis<div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">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!</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">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!!</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">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?</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">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, <a href="x-apple-data-detectors://0" x-apple-data-detectors="true" x-apple-data-detectors-type="calendar-event" x-apple-data-detectors-result="0">10pm</a> 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 <a href="x-apple-data-detectors://1" x-apple-data-detectors="true" x-apple-data-detectors-type="calendar-event" x-apple-data-detectors-result="1">24/7</a>. 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!!</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">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! </div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">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?!)</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">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:-</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">- it resembles Vaseline,</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">- far oilier than what I was used to</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">- stuck to everything, unlike my other stuff</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">- expensive as fudge</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">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!</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">I'll be back with more next month! Hurrah! Hurrah! Hurrah!</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">Mui.</div><div><br></div>Anonymoushttp://www.blogger.com/profile/18396188637192158196noreply@blogger.com3tag:blogger.com,1999:blog-568276222321456065.post-43083976498137587032015-01-25T07:01:00.001-08:002015-01-25T07:01:34.364-08:00The Girl Behind The Face...and other things<div>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. </div><div><br></div><div>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. </div><div><br></div><div>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. </div><div><br></div><div>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. </div><div><br></div><div>Please click "Like" on this following Facebook link!</div><div><br></div><div>https://www.facebook.com/GirlBehindTheFace?fref=photo</div><div><br></div><div>Don't forget to "share" it as well!</div><div><br></div><div>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 :-) </div><div><br></div><div>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.</div><div><br></div><div> 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!</div><div><br></div><div><br></div><div>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. </div><div><br></div><div><br></div><div>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.</div><div><br></div><div>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! </div><div><br></div><div>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!</div><div><br></div><div>Xx</div>Anonymoushttp://www.blogger.com/profile/18396188637192158196noreply@blogger.com1tag:blogger.com,1999:blog-568276222321456065.post-26797836115552885992014-12-29T06:30:00.001-08:002014-12-29T15:10:49.091-08:00My Year and Other Bites of My Life<div>My year. And more.</div><div><br></div><div>The year 2014 has already come to an end an it's been a weird journey filled with Highlights and definite lowlights. I've made friends, I've gained experience (maybe) but I've also lost. But hey, what's others loss is another's gain, I suppose. </div><div><br></div><div>I've struggled a lot this year with accepting who I am and what defines me. It's taken trials and tribulations to realize that life is not a bunch of roses and hard work needs to happen to make things (positive) happen. I'm so afraid of failure (which is ironic) that sometimes I block all that is bad in the world and focus on the good things. It's a good stance for some situations, but certainly not all. It can take one step forward towards positivity, but ten steps back to negativity and that's something that definitely sucks. But hey, that's life...only took 22 years to discover that. </div><div><br></div><div>I've been abundantly blessed to be connected social media and a part of the ichthyosis community. I was so frightfully nervous about opening up about my ichthyosis on Facebook because I've tended to use Facey as a platform for my hang ups and unhappiness at the world. But I've realised that through forums and such like, there are plenty of people in the same boat as I am, and that it's okay to ask for advice from others regarding lifestyle and skin care. And I've realised, now, that ichthyosis is just another thing that makes us unique in who we are. It's like a community of people or shall I say sufferers who bumble along together and that no question is too simple or difficult because as they sing in that dreaded High School Musical song, "We're all in this together!" </div><div><br></div><div>I've been fortunate enough to get back in touch with Hunter Steinitz and her daddy which has been so good! And with the beauty of iMessage on our iPhones, we are able to message more regularly and if time allows, even a sneaky FaceTime session. I've also gotten to get to know Stephanie better and even though speaking is an obstacle...(try a deep Southern accent vs a British one...it's hard!) we've recently started chatting on iMessage as well. So here's a callout, if anyone fancies having a hot and smokin' British Chinese Harlequin kiddo in their iMessages, let me know :-D</div><div><br></div><div>And come what may, maybe my skincare will continue to improve as I find things on the internet to try out. For example, have you ever thought household bleach in the bath could actually help combat skin odours, especially with ichthyosis skin buildup?! Well I didn't and thought it was a crazy idea but hey you don't know till you try right... I was all set to swear when that bleach bottle was opened tonight but funnily enough with hot water and a dash of bath gel, (I use Adidas Sports wash for men, by the way, it goes pretty deep into my skin and I like the deep ocean scent. Each to their own!) the bleach doesn't cause such a "oh mother f*ck" type of reaction. In fact, when I did it tonight, I was able to scrub off large and small flecks of skin leaving me with a moderately scale-less body, bar the feet which I'll tackle with, using an electronic foot file which I'll buy later on. damn, the skin under ones feet can really build up and is super painful even if you soak it. Time to try new methods. And experiment!</div><div><br></div><div>You may be shocked, but, dun dun dun, I've been reading a book. I mean A BOOK! Well I was reading the Daily Mail online as one does in the morning when I came across an article about twins, Sam and Anais who found eacother through social media, quite by chance and luck. Having been separated and given up for adoption at birth and raised in two completely different parts of the world, it's like a real life version of Lindsay Lohan in The Parent Trap. Having read articles and watched interviews of them, I was intrigued when I saw there was a book published called Separated @Birth, a love story of twins reunited. Though I was born in Hong Kong and not South Korea, I felt compelled to read a book, not just about twins finding each other after 26 years, but about the topic of adoption as well. I would think by now, all of you know that bit about me :-) The book has me thinking a lot about my own self and I'd highly recommend it for anyone to read, it's not everyday twins find each other via YouTube! And somehow I doubt I'm a twin! Here is an Instagram shot of my copy! Ignore the emails and free spirit keyboard cover :D</div><div><br></div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj13OtyMnOXqlEwHGLBPMEChkvxx-IhI9hULqRGivpFe4I-jCsTUl9wocKj7PmFGHNoLRk22Xg0M-7gMRr8rHNyaQaK6PEqNkSP1BDjluTxBNlrC4dryj8k06UbHyH_lqDOVo8PkoUoIUw/s640/blogger-image-936787125.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj13OtyMnOXqlEwHGLBPMEChkvxx-IhI9hULqRGivpFe4I-jCsTUl9wocKj7PmFGHNoLRk22Xg0M-7gMRr8rHNyaQaK6PEqNkSP1BDjluTxBNlrC4dryj8k06UbHyH_lqDOVo8PkoUoIUw/s640/blogger-image-936787125.jpg"></a></div><br></div><div><br></div><div>I've skirted around the subject of adoption for a while and while I have been abundantly blessed with a good life, even if I may cause more drama in time (I was a born drama queen!), I've been thinking more about the situation surrounding my own adoption. What if what we know now has been fabricated. There are tons of "what if" thoughts and what if it was a regretful mistake on the biological parents part. Of course I'm being paranoid, but there is sometimes a longing to find out whatever you can, surrounding your physical existence. For example, how alike are we?! Are there hereditary medical conditions (apart from Ichthyosis) that I should know about?! Why, (and I mean more like, WHY THE HELL) did you,choose to bring a child into the world, only to relinquish your rights?! How did you feel?! Do you still think about the child you gave up?! Does my biological mother have massive boobs like me?!(sorry, needed some humour in this!)</div><div><br></div><div>All these questions can race around in an adoptee's mind but for the most part, the most important thing is to know that what one set of parents lost, was another set of parents' gain. And I wouldn't be sitting here writing this blog otherwise.</div><div><br></div><div>This sounds awfully morbid and self loathing, so swiftly I move on to more exciting moments of my year. </div><div><br></div><div>Rugby refereeing is still happening and it's keeping me on my wee toes. I love being on the pitch and being the boss. I've now got an awesome mentor who I can discuss my games with and hopefully with the new changes, I'll be able to progress up the HK refereeing ladder. My dream is to make it as high as I possibly can, though it's a tough hill to climb, I hope to make to World Rugby (Previously IRB) level. But first I need to make to past ARFU and that in itself is a challenge I'm willing to hit right on the head, come what may. I'll be running touch again at the 2015 New Years Day Tournament, running with the U12 girls. Though New Years Eve might be a bit of a wrecking ball for me, New Years Day is a pretty big thing for me to even make the squad. So that's on my agenda and I'm so determined to be the one in the middle soon. Plus I do hope to avoid a repeat of last years' knee saga. I now know that my knee has started to rub against bone on bone, so I just need to be more careful and bind up...that should be it...right?!</div><div><br></div><div>The weather in Hong Kong has been frightfully nippy with temperatures down to 10 degrees Celsius at times. Truthfully, I adore it because I can accomplish so much more that when it's hot and humid. But let me tell you, Hong Kong is a sub tropical city and cold winters are nobody's friends here. The funniest thing for me is when I see people on the train in the morning, wrapped up like Eskimos when in truth, outside is only 18 degrees Celsius. Some people have the mentality of, if it's metaphorically winter, the massive North Face jacket will come out! Luckily, through 3 years of good work, I've managed to condition my body to withstand cold temperatures while wearing shorts and just a hoodie. I've been called crazy before! After all, I've refereed in Baltic conditions (and by Baltic, I mean 10 degrees) wearing nothing but my shorts and shirt and polyester socks, come rain or sun, so I'm quite happy to trudge around in shorts and a hoodie because that's what I'm comfortable in, most of the time. I do wrap up for work though, there are certainly dress codes! I've been stared at before, I've been told to put more clothes on, but the fact of the matter is, I adore winters in Hong Kong, cold days, short daylight hours, ability to,push myself harder at my sporting activities, it's great!</div><div><br></div><div>And did I mention I've just turned 22 this year?! Sh*t is about to get real???or won't it?!</div><div><br></div><div>I pray and hope that 2015 brings you peace and love. With lots of kisses,</div><div><br></div><div>The IchthyRef xoxo</div><div><br></div><div><br></div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEikjySFjb4zFUbSG3Bx8JLlZUfXGECjlWYEQMIL88K8ND4WCGDfbzxINWgcPf_mB-TLk4M1Xa6ghFqnSO5G8aRSMh17mY2sLXzSrnvZWkxReOlXSnDKhxKWkd50w-pUHM39TQmSC3P_Q-g/s640/blogger-image--1790321197.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEikjySFjb4zFUbSG3Bx8JLlZUfXGECjlWYEQMIL88K8ND4WCGDfbzxINWgcPf_mB-TLk4M1Xa6ghFqnSO5G8aRSMh17mY2sLXzSrnvZWkxReOlXSnDKhxKWkd50w-pUHM39TQmSC3P_Q-g/s640/blogger-image--1790321197.jpg"></a></div><br></div><div>I know...I have friends!!! Meet two of 'em...Bryan and Graziey!! </div><div><br></div>Anonymoushttp://www.blogger.com/profile/18396188637192158196noreply@blogger.com1tag:blogger.com,1999:blog-568276222321456065.post-55859146404926032912014-12-01T18:17:00.001-08:002014-12-01T18:17:33.882-08:00Amazeballs - That's Why I'm Thankful :)<div class="MsoNormal">
Why am I grateful to have Ichthyosis?<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Don’t judge me, for I’ve not written anything for
November…what a bad-ass!!<o:p></o:p></div>
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<br /></div>
<div class="MsoNormal">
I’m British Chinese, I live in Hong Kong. Thanksgiving is
just not my thing, though I do have American friends who are susceptible to my endless
American piss-take quips. But wait, I may have told a weeny lie. We DID
celebrate Thanksgiving at work. It was mainly food and game filled. And if a
party fills me up with food, I shan’t complain.<o:p></o:p></div>
<div class="MsoNormal">
But still, harking back to my point, I think that being
thankful for things in life is important and here is my list. <o:p></o:p></div>
<div class="MsoNormal">
I’ve borrowed this amazeballs idea off my friend <a href="http://lifeasusdotcom.blogspot.hk/" target="_blank">Stephanie</a>
Turner and <a href="http://carlyfindlay.blogspot.hk/" target="_blank">Carly</a> and I have decided to follow suit…that’s what bloggers do
right?!<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoListParagraphCxSpFirst" style="mso-list: l0 level1 lfo1; text-indent: -18.0pt;">
<!--[if !supportLists]--><span style="mso-bidi-font-family: Cambria; mso-bidi-theme-font: minor-latin; mso-fareast-font-family: Cambria; mso-fareast-theme-font: minor-latin;"><span style="mso-list: Ignore;">1.<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]-->I am grateful for simply having life. Without
life, none of us would be here and I certainly wouldn’t be. I have many
difficulties in<span style="mso-spacerun: yes;"> </span>my life with having
Harlequin Ichthyosis and being adopted. But I’m thankful for having a shot at
life, however long or short that might be.<o:p></o:p></div>
<div class="MsoListParagraphCxSpMiddle">
<br /></div>
<div class="MsoListParagraphCxSpLast" style="mso-list: l0 level1 lfo1; text-indent: -18.0pt;">
<!--[if !supportLists]--><span style="mso-bidi-font-family: Cambria; mso-bidi-theme-font: minor-latin; mso-fareast-font-family: Cambria; mso-fareast-theme-font: minor-latin;"><span style="mso-list: Ignore;">2.<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]-->I’m grateful for having Ichthyosis because it
has afforded me a life of interesting moments and fabulous oppurtunities.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoListParagraphCxSpFirst">
<br /></div>
<div class="MsoListParagraphCxSpMiddle" style="mso-list: l0 level1 lfo1; text-indent: -18.0pt;">
<!--[if !supportLists]--><span style="mso-bidi-font-family: Cambria; mso-bidi-theme-font: minor-latin; mso-fareast-font-family: Cambria; mso-fareast-theme-font: minor-latin;"><span style="mso-list: Ignore;">3.<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]-->I am grateful for having Ichthyosis because over
the years, medicine has evolved in such a way that many people have stepped
forward with offers to make my skin and general wellbeing better without the
intrusion of hospitals and scary machines…thank you Lauren Bramley and
Partners, you guys are amazing!<o:p></o:p></div>
<div class="MsoListParagraphCxSpMiddle">
<br /></div>
<div class="MsoListParagraphCxSpLast" style="mso-list: l0 level1 lfo1; text-indent: -18.0pt;">
<!--[if !supportLists]--><span style="mso-bidi-font-family: Cambria; mso-bidi-theme-font: minor-latin; mso-fareast-font-family: Cambria; mso-fareast-theme-font: minor-latin;"><span style="mso-list: Ignore;">4.<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]-->I’m grateful to my parents because without
Ichthyosis, they would not be my parents. They guide me, they nurture, they
push, they plead, but most of all, they love me and have molded me into a
goofball. I may have slipped into oblivion in recent years, but my parents have
been there to try and help me back up onto my feet. It’s a work in progress but
I’m super thankful for those two!<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoListParagraphCxSpFirst">
<br /></div>
<div class="MsoListParagraphCxSpMiddle" style="mso-list: l0 level1 lfo1; text-indent: -18.0pt;">
<!--[if !supportLists]--><span style="mso-bidi-font-family: Cambria; mso-bidi-theme-font: minor-latin; mso-fareast-font-family: Cambria; mso-fareast-theme-font: minor-latin;"><span style="mso-list: Ignore;">5.<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]-->I’m grateful for having Ichthyosis because it
means I have something interesting to tell the world. I have the unique sights
into what could be considered an exclusive club of those with Ichthyosis. I
know that this could be a great opener to any conversation with a stranger. Can
you imagine? My name is Mui Thomas and I have Harlequin Ichthyosis?!<o:p></o:p></div>
<div class="MsoListParagraphCxSpMiddle">
<br /></div>
<div class="MsoListParagraphCxSpLast" style="mso-list: l0 level1 lfo1; text-indent: -18.0pt;">
<!--[if !supportLists]--><span style="mso-bidi-font-family: Cambria; mso-bidi-theme-font: minor-latin; mso-fareast-font-family: Cambria; mso-fareast-theme-font: minor-latin;"><span style="mso-list: Ignore;">6.<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]-->I am grateful for the fantastic Ichthyosis
community. In a world that is constantly connected by social media, it’s so
much easier to communicate with other sufferers these days as opposed to 15
years ago.<span style="mso-spacerun: yes;"> </span>Being able to exchange ideas
and provide suggestions to fellow people with ichthyosis absolutely takes the
edge of some of life’s most intense moments. It’s also lovely to be able to understand
how other people live their lives.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoListParagraph" style="mso-list: l0 level1 lfo1; text-indent: -18.0pt;">
<!--[if !supportLists]--><span style="mso-bidi-font-family: Cambria; mso-bidi-theme-font: minor-latin; mso-fareast-font-family: Cambria; mso-fareast-theme-font: minor-latin;"><span style="mso-list: Ignore;">7.<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]-->I am grateful for the friends and aquintences
that I’ve made over the years. You guys never cease to crack me up. And you
know me for who I am, the skin is just another piss-take <span style="font-family: Wingdings; mso-ascii-font-family: Cambria; mso-ascii-theme-font: minor-latin; mso-char-type: symbol; mso-hansi-font-family: Cambria; mso-hansi-theme-font: minor-latin; mso-symbol-font-family: Wingdings;"><span style="mso-char-type: symbol; mso-symbol-font-family: Wingdings;">J</span></span><o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoListParagraph" style="mso-list: l0 level1 lfo1; text-indent: -18.0pt;">
<!--[if !supportLists]--><span style="mso-bidi-font-family: Cambria; mso-bidi-theme-font: minor-latin; mso-fareast-font-family: Cambria; mso-fareast-theme-font: minor-latin;"><span style="mso-list: Ignore;">8.<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]-->I’m grateful to have a blog which people
actually bother reading. Thanks folks!!<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoListParagraph" style="mso-list: l0 level1 lfo1; text-indent: -18.0pt;">
<!--[if !supportLists]--><span style="mso-bidi-font-family: Cambria; mso-bidi-theme-font: minor-latin; mso-fareast-font-family: Cambria; mso-fareast-theme-font: minor-latin;"><span style="mso-list: Ignore;">9.<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]-->I’m grateful for the local community in which I
live. I’m grateful for the rugby oppurtunities, even if I am still a sucky
referee, the contacts and friendships within that. I’m grateful for the chance to
help out at special needs sailing, I love the whole of Sai Kung!<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Right, I’m going to sign off because it’s eating time for
me!!<o:p></o:p></div>
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<br /></div>
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PS. I’m looking to spruce my page up a bit more. My layout
doesn’t exactly scream fun and Welsh, so if anyone would like to suggest
templates…please do! <o:p></o:p></div>
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Anonymoushttp://www.blogger.com/profile/18396188637192158196noreply@blogger.com1tag:blogger.com,1999:blog-568276222321456065.post-74410971661789918012014-10-29T08:10:00.001-07:002014-10-29T08:10:39.509-07:00I'm Not a Peanut!<div>People say I'm nuts, for what I do to myself. I hope there are no nut allergies here on this blog! </div><div><br></div><div>This thing has turned monthly, I'm sorry! But I just figured that writing something monthly could be a whole lot more interesting than trying to concoct a daily post, both mundane and boring. Something less frequent might be a bit more interesting, wouldn't you say?!</div><div>Let's start with October, a relatively uneventful month, eating, living, a couple of medical checks for the darling leg and a bit of assistant refereeing. </div><div><br></div><div>Possibly my top AR highlight has been at my old school, KGV. Not only was it an exhilarating match, but seeing as it was October, my good self was able to carry through almost to my full standard with very few puffy breaths and a good need for speed. The weather has cooled down too, thank hamsters. Hopefully more is to come. For me, having HI does not really limit how fit I am, at least as much as I thought. Like anyone, i want to be fit and with the programme, that comes hard work, core muscle training and a kick in the arse for being pathetically slow during sprints. That being said, my best work is done when it's cooler, around this time. Tonight, 29th October, I feel like I'm almost back to full strength. I attended usual Wednesday night training and felt good for the first time this year. I've got a double dose of action this weekend with the first Mini Rugby festival coupled with a 24 hour charity dinghy race.</div><div><br></div><div>I really enjoy the 24 hour race as it's a party atmosphere and the Hebe Haven Yacht Club comes alive with teams from all over HK and overseas. Looks like I'll be doing graveyard shifts again this year which I detest to an extent because the wind levels drop I'm the middle of the night. I enjoy telling people last year that it took three hours to complete my shift, on the boat at 2am, off at 5am. There was very little wind and it was chilly too! Must remember the jacket this year! I will also be hot footing it to Kings Park in the afternoon to referee a bunch of matches in the Under 10s category. This should be very interesting as it's the first rugby tourno of the year plus I'll be quite sleep deprived. So please, if anyone sees me walking around aimlessly on the pitch on Sunday, hand me a redbull or a dunk a bucket of ice on me and I should be good to go! Or just give me a gigantic hug!</div><div><br></div><div>Okay, enough about fitness, since I'm sure half of you are probably curled up on the sofa feeling sorry for yourselves. I wanted to touch on a topic that I get asked about a lot, having HI. And that is, Am I in any pain? And the answer is no. Or more along the lines of, "I know how I feel, but that's probably different to you guys". Of course I feel sore sometimes, but there's nothing a rub of aloe Vera gel cannot heal. I find that when I feel sore when I am warmer after an activity, then yes, but that rarely, if ever evolves into anything else. If I'm sore, it's mainly self-inflicted and not quite skin related. </div><div><br></div><div>Another super exciting thing from October is that for the first time in 21 years, I'm changed my hair color. Okay, so it may be a dip-dye (ombré) but it's pretty high up, you'd probably think my whole head is ginger-blonde. , I used a cream dye instead of a more liquid dye and I've had no chemical reactions after a blob got on my skin. Aside from it burning slightly, there was no problem. So maybe in the future, I may try a whole head of dye, I'll just wait for my hair to grow a bit as I hear that bleach is for keeps and I'm not sure I'm ready for the shaven look!</div><div><br></div><div>Thank you for tuning in to another IchthyRef blog and I can't wait to see you guys in November, where I'm sure events will be as fun as always! </div><div><br></div><div>Xx</div><div><br></div>Anonymoushttp://www.blogger.com/profile/18396188637192158196noreply@blogger.com0tag:blogger.com,1999:blog-568276222321456065.post-75241888487321363302014-09-12T09:51:00.001-07:002014-09-12T16:05:03.435-07:00How I Deal with the Minority - Usually the Village Idiots<div>I read a blog of Carly's recently about intrusive strangers and while what the baristas did was somewhat uncalled for, I wanted to offer my take on something which ultimately affects those with differences. Both visually and cognitively. </div><div><br></div><div>People will stare at each other often on a daily basis. It's all par for the course in that you will be stared at if you have a cool top on, have the latest gadget, have a cute spouse on your side. But more to the point, people with Ichthyosis will often get grief from others. They will ask about why you are the way you are. </div><div><br></div><div>Living in Asia, it's a relatively westernised, albeit nosey society where anything out of the ordinary is met with a double take and maybe verbal reactions. 21 years folks, 21 years and I still have not perfected the art of offering a sufficient explanation for why I am the way I am. </div><div><br></div><div>I will get Chinese people staring at me, Filipino ladies double taking me, kids pointing and screaming...it goes on. It's only recently that I've become slightly more comfortable with people asking me what's happened to my skin. I'm okay with people asking because it shows that they are genuinely interested to know why I look like a sunburnt strawberry. And to put it mildly, my latest explanation went something along these lines, " okay kids, so you know how there are people in the world with black skin, red hair, they may be brown, they may be ginger ninjas? Well, I'm no different, my skin is just a different colour and my skin comes off too!" This usually is then followed by me inviting them to rip a bit of skin off my arm. I do not suggest this by the way! I have a friend called Jen, who worked with me for a bit but we are great firm friends. She is literally the only one who is allowed to physically take my arm, look at my shoulder for loose skin to pick before taking a snap and sending it via whatsapp to her boyfriend. Strange child. But I try to be forth right in how I explain the way that I am. Some days I don't have my mojo and I'm not so inclined to be so nice. To put it mildly, if people are curious or are staring at me, I turn away and mutter some incoherent Chinese. This is usually first thing in the morning.</div><div><br></div><div>I understand that sometimes the intrusion can get too in your face and you just want to press the stop button. But unfortunately, the Doctor Who tardis does not exist and nor does Harry Potter's invisibility cloak. People will intrude on your life and especially because we look different, you'll often be the subject of interest and questions fired from all directions. Fortunately, for me, things are gradually getting a bit easier. There are good days and there are bad days. Just got to roll with it. And believe me, I am also guilty as sin for reacting as well to unusual things. No one is perfect in that they have never intruded on someone else's life. </div><div><br></div><div>Onto a bit of rugby now, this correlates to this topic. Having HI completely goes out of the window when I am on the rugby pitch, holding that Acme Thunderer whistle commands the sort of behaviour which requires respect without judging. There has, touchwood, been no instances where I have walked onto a pitch and a coach has asked me to leave because I may scare the players. I have seen players speak to their coaches, commenting on my appearance to which the coach promptly and sternly tells them to get on to the pitch, no buts. I like how especially in the HK rugby community (which is bloody massive), no one intrudes on my appearance, they do however, intrude on my stupidity at times. But I'm okay with that.</div><div><br></div><div>I've learnt to accept that intrusion is par for the course and that if you can't handle it, well, sorry, but you've gotta plough on, because it's one battle that only you cannot win. You cannot dictate the behaviours that go on around you, you cannot dictate how others choose to know you more. I'm certainly slightly more creative in my explanations to people and that's the way it goes. And I'm cool with people approaching me and others to know more about HI. I have a cool bunch of people around me who are always at the forefront and I don't give a toss if they tell others about my condition, because it means when they do that, one more person in this world will know about Harlequin Ichthyosis. And that's awesome.</div><div><br></div><div>By the way, on a side note, I bought some onion bhajis tonight because I was hungry and they were amazing! </div>Anonymoushttp://www.blogger.com/profile/18396188637192158196noreply@blogger.com0tag:blogger.com,1999:blog-568276222321456065.post-19365160621116162332014-09-02T07:58:00.001-07:002014-09-02T07:58:24.626-07:00"The Lean Mean Eating Machine"<div>By the way folks, that quote comes from PapaRef and MamaRef...not my own work!</div><div><br></div><div>I'm a big eater. It's common knowledge amongst my family and friends that the IchthyRef eats a lot. I've been very lucky that I've always been able to eat, without the need for medical intervention and gtubes. </div><div><br></div><div>To give you an idea, I can work my way through a whole plate of Yueng Chow fried rice, a few helpings of mixed Chinese vegetables and maybe all the pork from a plate of Sweet and Sour. That's Chinese food. It's not all quiet on the Western Front though. I'll eat all the usual suspects, the meat, the pasta, the vegetables. My general rule these days is that as long as I can recognise what I'm about to eat, I'll eat it. If it's something like intestines or offal (Chinese stylie). I will try it once. Or if it's something in which I really don't want to know what I've just bitten into, don't tell me until it's the following week, assume I've eaten chicken. Not penile delights...</div><div>But that's usually the last time I try being adventurous. What are you guys like when it comes to eating funny things?</div><div><br></div><div>The point of me telling the world that I eat huge amounts is because in theory, people with Harlequin Ichthyosis have high metabolism because of the immensely rapid turnover of skin. This basically means I need to eat more than the regular recommended 2000 calories a day. I need to drink lots of fluids, eat protein, carbohydrates and all the blah. I constantly scratch my head when it comes to finding food enough to last the day. </div><div><br></div><div>I've just attended this years' referee camp where it suddenly hit me. Ordinarily, I'm supposed to hit about 3000 calories a day...(through a chat with fellow HI buddy, Hunter). The average person only needs about 2000 calories, but because of our fantastically high metabolism, we just need to keep eating. I wouldn't know, but assuming because I'm in the sporty world, amateur in some way or form, I need to probably hit in the region of <a href="tel:4000-5000" x-apple-data-detectors="true" x-apple-data-detectors-type="telephone" x-apple-data-detectors-result="0">4000-5000</a> since not only am I supposed to cover basic Ichthyosis nutritional needs, but I'm also covering additional energy needed to do what I do. And people wonder why I'm always eating...</div><div><br></div><div>Let me give you a brief rundown of what I ate today (2nd September), beware, it's by my own confession, amazingly bad!</div><div><br></div><div>Breakfast - a BBQ pork bun and a Red Bull on the go</div><div>Before work - a packet of crackers, water</div><div>Lunch - a rice box with sashimi fish , Lucozade bottle</div><div>Snack - ready pasta from a pack</div><div>Dinner - protein shake (High-5 4:1 Whey Protein)</div><div><br></div><div>By my own confession, this isn't that healthy and I do not suggest others try my diet. I've thought about this and while this is not the healthiest option, the crap in this gets eaten away and stored as my metabolism is high and my body needs the energy. </div><div><br></div><div>If im out at a rugby festival or I'm ARing like last season, my ritual always includes either a beef and bacon burger or some pasta, about three hours before the game. If I'm at a minis festival, I usually eat small bits throughout the day. </div><div><br></div><div>I'm working on improving my nutrition plan to include more fresh foods like:</div><div>Nuts, meat which has not been doused in sweet and sour sauce, more liquids and more fruit and vegetables. And keeping this for longer than a week might help too...!</div><div><br></div><div>Nutritionists of the world, please do not kill me for such a bad diet! I'm open to creative and quick on the go suggestions :)</div><div><br></div><div>Bye! By the way, here is the whey protein stuff I bought from Escapade, full on good stuff used by many athletes. And it's more of a yoghurty consistency but is drinkable!<div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgaW-6a60GjbASO14WbZnHopzOvppoLpk3oComfscz6pVS1mAyGkDkR2HnZX3P97P_orMgS9yJ6Qxgt_2ePdlq70pc7WFFbymOrS-EyvtjaxN-mAT3JemEdvdlboA2WhublY8Wi0CxQ-JU/s640/blogger-image-592091817.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgaW-6a60GjbASO14WbZnHopzOvppoLpk3oComfscz6pVS1mAyGkDkR2HnZX3P97P_orMgS9yJ6Qxgt_2ePdlq70pc7WFFbymOrS-EyvtjaxN-mAT3JemEdvdlboA2WhublY8Wi0CxQ-JU/s640/blogger-image-592091817.jpg"></a></div></div><div><br></div><div><br></div>Anonymoushttp://www.blogger.com/profile/18396188637192158196noreply@blogger.com0tag:blogger.com,1999:blog-568276222321456065.post-80069113661706787262014-08-21T06:48:00.001-07:002014-08-21T06:48:23.177-07:00The Simple Joys of the Bucket<div>There is the ALS, how about Ichthyosis?</div><div><br></div><div>By now you'll have seen social media awash with people pouring buckets of water over their heads. Great idea, it's hot, it's a good cool down, but it's also for a good reason. Lou Gehrig's disease otherwise known as ALS or Motor Neurone Disease is a degenerative condition in which patients gradually lose the ability to control their body. </div><div><br></div><div>In the case of Morrie, in Mitch Albom's best selling book, Tuesdays with Morrie, Morrie is diagnosed with ALS after collapsing at a dance hall. He first loses the ability to use his feet and over an agonising period of time, his body literally shuts down and eventually and sadly, he passes away. Another example of ALS lies with British physicist Stephen Hawking who has a form of ALS. </div><div><br></div><div>The idea of dousing a bucket of ice water was a way to encourage others to donate money towards finding a cure so that ALS doesn't have to have such a impact on lives. That people don't have to suffer like Morrie did. When I first saw what was being done, I was a bit wary of the fact that tons of water was being wasted, but if it's helping others find a cute, let's do it! Let's be honest, it IS a novel way of fundraising I reckon. And I did it too!</div><div><br></div><div>However with all things relating to research of chronic illnesses and genetic conditions, my heart skips a beat (maybe 10) because despite a small legion of efforts, I know it'll be a very long time till some wise chap finds a cure for Ichthyosis, be it Lamellar or Harlequin. I do get slightly sad when I see tons of efforts being raised for more common illnesses which is fair enough because that's important too. But sometimes I imagine people with Ichthyosis must be scrambling for ideas on fundraising towards a cure. This may also be the case for others with lesser known conditions. </div><div><br></div><div>I am in no position to assume (but I will) but given the activity on Facebook, at least on mine, I have a huge number of friends unaffected by Ichthyosis but knows someone who deals with it, parent, carer or sufferer. The ALS challenge got me thinking, if this much awareness has been raised about ALS, spreading awareness like wildfire, then I'm sure us Ichthyosis people can come up with something to raise awareness not just within our legion, but the general world as well. </div><div><br></div><div>Though the ice bucket challenge was fun (and cooled our bodies right down), it would be no longer be an original concept in which people want to raise money and awareness. I need to have a think and a long one but in honour of difference in appearances. I'll keep you posted on ideas...remind me soon, I'll forget!</div><div><br></div><div>I'm trying to work out how to attatch the video of me dunking a bucket of water over my head...I'll upload it to my Instagram page.</div><div>Do follow me at:</div><div>muixthomas</div><div><br></div><div>Xx</div>Anonymoushttp://www.blogger.com/profile/18396188637192158196noreply@blogger.com0tag:blogger.com,1999:blog-568276222321456065.post-7308944181530356582014-08-19T03:13:00.001-07:002014-08-19T03:13:55.598-07:00Life in The Mad Land<div>Hong Kong is a great place to be. Although in summer, it's a bit uncomfortable where temperatures can get to 33 degrees centigrade and 95% humidity. Don't feel sorry for me, feel sorry for the poor folks of Hong Kong who put up with my moaning! Ice cream, aloe Vera, fake Havaianas, shorts and sun screen never fail to raise a smirk!</div><div><br></div><div>I am so very excited because the rugby season in Honkers is about to begin and that kicks off with the annual Rugby Referees camp at the end of August. Usually held over a full day, it's the one of few days I will comply with my alarm clock as the location is usually on the other side of Hong Kong and starts at stupid'o clock. This season, I have many hopes, they include</div><div><br></div><div>- no injuries - Hong Kong will be pissing themselves laughing at that claim</div><div>- further advancement into Colts and Teenage rugby - can't beat a few hormones!</div><div><br></div><div>I have been bemoaning about my knee to every man and his dog since I did it back in January, 1st January to be precise...at a rugby tourno, how apt! Well on the 13th of August, which was last week, I finally had the all important MRI scan which will hopefully come back with a proper slightly more accurate diagnosis of what I've done. All signs are pointing to a torn meniscus ligament. I've been having some physio at the hospital to try and strengthen up my quadriceps. But between blog and me, the strong man training done at pre-season referees training is ten times better than what I've been doing previously. I will find out the real results next week...whoop. Fingers, toes and rude bits crossed!</div><div><br></div><div>I don't know if I've spoken extensively about Sai Kung. Set in the eastern new territories of Hong Kong, I am surrounded by lush green, trees, beaches and best of all, great people. What is traditionally a fishing village. Sai Kung is such a lovely place to be. It's nice coming back to Sai Kung in the evenings away from the madness of HK Island, where I commute to the office each day. Sai Kung is an oasis in itself, people know each other and they look out for one another. What's great for me is the fact that because the city is full of pollution and god knows what, Sai Kung and the new territories are a breath of fresh air, literally. There is always something to do in Sai Kung and there is a reason pilots, sports people and other crazy humans make it their home. With so many bars, restaurants, walks, and more, you'd be forgiven for not wanting to move away from the place. I hope I'll be able to stay in Sai Kung for a long time. It's the antithesis of Central District, but we aren't stuffy.</div><div><br></div><div> We only start hating on the tourists who clog up the single lane traffic on the weekends making it an entire ordeal to get out on the weekend...every damn week. But hey, they bring tourism and junk boat parties our way...and eat all our seafood...I kid you not, once you move to Sai Kung, you become an expert at monitoring when the taxi queue is an acceptable length to leave the bar! </div><div><br></div><div>I'm starting to look for people who would like to do a guest post. I'm looking for people who want to talk about the perils of life. I'm not focussing solely on Ichthyosis, just looking for people who would like a space to see if blogging is for them! </div><div><br></div><div>Looking forward to hearing from anyone, in Hong Kong or abroad! </div><div><br></div><div>X</div><br><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-zLJAgv8xKPrI5tX4Juywc_TDxAyq7nsetSlYeE7ecFkFs5ioslsyesCs5zjLkm8su5NSqwS9GDK6wJ7tbK2TrAEQ8Ja1zO3Fd4RYEuUkTa99uvKkVindHxKxywcvGH0ShpTF5WtDIbc/s640/blogger-image--662048282.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-zLJAgv8xKPrI5tX4Juywc_TDxAyq7nsetSlYeE7ecFkFs5ioslsyesCs5zjLkm8su5NSqwS9GDK6wJ7tbK2TrAEQ8Ja1zO3Fd4RYEuUkTa99uvKkVindHxKxywcvGH0ShpTF5WtDIbc/s640/blogger-image--662048282.jpg"></a></div><br><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgnyMQTRt4pRAcNUpUe-ObJDjpDRviuVkGfSCJvVjam-g1VyD5CyDdTNEYnSVhhsXHqDHlP55jOWNgxoYF_TEy6QM3OaJa9-faM54eHyUZyD6Q5gkH3vYXbblhj7AoI06SphGJy7NqbwDY/s640/blogger-image-1783998677.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgnyMQTRt4pRAcNUpUe-ObJDjpDRviuVkGfSCJvVjam-g1VyD5CyDdTNEYnSVhhsXHqDHlP55jOWNgxoYF_TEy6QM3OaJa9-faM54eHyUZyD6Q5gkH3vYXbblhj7AoI06SphGJy7NqbwDY/s640/blogger-image-1783998677.jpg"></a></div>Anonymoushttp://www.blogger.com/profile/18396188637192158196noreply@blogger.com0tag:blogger.com,1999:blog-568276222321456065.post-77299171886688789412014-07-28T03:49:00.001-07:002014-07-28T03:49:14.481-07:00Why Blog? That is the Question<div><br></div><div>I was reading Carly Findlay's blog when something flashed upon my mind. That girl likes to blog. And she covers so many topics. She knows no limits and it's clear that if blogging paid well enough, she'd probably be one to give up the day job to focus solely on that. And what a journey that would be!</div><div><br></div><div>But then looking at myself, I found myself thinking to myself as I gulp a bottle of water and eat instant noodles for lunch, I end up thinking, well, why DO I blog?! Well here's why. </div><div><br></div><div>I find that my ideas come alive on paper. Sometimes I struggle to verbalise my thoughts. It's as if I've suddenly become mute and only say things which would please others. I find that putting my thoughts down in writing helps me verbalise what's going on in my crazy mind and writing it down makes everything make sense. Do you understand? </div><div><br></div><div>How does my writing differ from others in it’s genre?</div><div><br></div><div>My kind of writing differs from other in that what I write is very very personal to me and it's a bit like a journal to me. I have the ability to write what I want, more of less without boundaries. And that reflects me in a way, I like to try and live on my terms. I like to be able to write witty remarks and poke fun at things, examine my life and see the beauty of seeing my own writing being seen by others. </div><div><br></div><div>What can I bring through blogging?:</div><div><br></div><div>The fact of the matter is, apart from having the odd appearance of a sunburnt strawberry, I'd like to think I bring humour and good vibes to people. But all things serious, I am one of few in the world with Harlequin Ichthyosis and indeed Ichthyosis and in the top generation of sufferers with Harlequin. I'd like to think I bring an optimism to others. To bring hope to those struggling with the what ifs, I hope that through my blogging, I can bring comfort to others that while having a skin disorder, life doesn't have to stop there. I want to show that you can reach for the stars and the sky is the limit. I hope to inject humour into something that let's be honest, isn't really humorous to begin with. </div><div><br></div><div><br></div><div>My ideal readers are:</div><div><br></div><div>People affected by Ichthyosis, sufferers and carers,</div><div><br></div><div>People who are bored and fancy reading something interesting,</div><div><br></div><div>People who want to take life lessons from a somewhat naive 21 year old,</div><div><br></div><div>People who are in search of new blogs to read and follow</div><div><br></div><div><br></div><div>Blogging will make me feel:</div><div><br></div><div>Blogging makes me feel at ease, there's something about blogging that's strangely comforting to me. The idea that I can reach out to people and hopefully pass on a little of what my parents have been teaching me. Blogging makes me feel like I can be me, I no longer have to hide behind a facade anymore. To make me feel more at ease about having a skin disorder which will stay with me for keeps.</div><div><br></div><div>What am I working on?</div><div><br></div><div>I'm working on fresh material all the time. Whether it's about life, Hong Kong, Ichthyosis or my rugby refereeing. I constantly have ideas on the go. One day i'd like to be paid for my thoughts!!</div><div><br></div><div>Why do I write what I do?</div><div><br></div><div>Why indeed. I feel inclined to write about myself because that's the best way to write. I couldn't possibly write about anyone else because I don't know them. I don't know how their mind works. And vice versa. I hope that with my writing, I don't offend people with my blunt attitude towards things. I write about life in a way that I hope others will benefit in some shape or form. I write about things that others may not be comfortable writing or talking about. I understand that sometimes I write things and I come accross as a cruel and uncaring person who basically tells people to shut up and deal with the cards they've been dealt with. I don't ever mean to come across as that way. I was raised to be a caring individual by MamaRef and PapaRef and I know sometimes that doesn't shine through. But I hope in time, that obnoxious curse will be broken and things will bubble along nicely. </div><div><br></div><div>I write about my life because I want to break the stigma of those who have disability and feel that society is against them. And for someone who was born in somewhat harsh and difficult circumstances, and then was picked up by Mama and PapaRef who have always egged me one and told me to persevere and give things a go, I feel like I'm in a position to say that I'm living proof that you can push through barriers and live a somewhat happy if not chaotic and fulfilling life. I mean I have to thank my parents for helping me get to where I am today. I certainly didn't do this all on my own, I mean my views may be my own, but my gung-Ho attitude and willingness to give life a go, all comes from MamaRef and PapaRef. To this I am so grateful. </div><div><br></div><div>How does my writing process work?</div><div><br></div><div>My writing process is somewhat flimsy in that I do not have a specific writing schedule. I write when I feel like it and more often than not, most of my work is done on my commutes to work. I use my iPhone to type out my posts and sometimes I use the iPad to continue things if I get fed up of squinting at the ridiculously small keyboard being trampled over by my fat muscular fingers. I also write late at night if I can't sleep. The thing I love about blogging is that I can choose when I write and there are no deadlines. There are times when I have terrible bloggers block and won't write for a few days, but there are also times when I'm on a roll and can write a whole post in an hour. If i am able to summon up the courage, I look to people to help me do a Q&A session and I hope I can do more of those. </div><div><br></div><div>I don't tend to write during work hours just because I don't have the time nor energy capacity to even spill out a sentence. That being said, my blogging is something that's a past time and something to be done in my own time. But anecdotes about work and rugby always pop up! </div><div><br></div><div>I tend to draw material from my life on Facebook and Instagram. I may not always mange to churn out a long blog, but I love keeping people in the loop through my twitter, Instagram and Facebook. I depict my adventures in photos, blogs, memes and more. This being said, I have always kept those mediums relatively seperate, so that friends and followers get something's new and unique wherever they look. But this IchthyRef blog is wired through Facebook, Google and Twitter so people are always able to find their way here. </div><div><br></div><div>I wrote this after reading Carly's post and decided to take part in this little blogging exercise. I hope this has worked well! </div><div><br></div><div>The IchthyRef xxx</div>Anonymoushttp://www.blogger.com/profile/18396188637192158196noreply@blogger.com0tag:blogger.com,1999:blog-568276222321456065.post-39640290197774647422014-07-27T18:25:00.001-07:002014-07-27T18:25:52.201-07:00Am I Scared?! No Duh!!!<div><br></div><div>Many people see me, they see a woman (nearly wrote girl there...!) who stands out from the crowd. And by stands out, I do not mean the likes of Cara Delevigne or Robbie Williams (though both are wicked human beings, let's be fair!) I stand out because I have a skin disorder. And believe me I wish and pray to god I didn't have it sometimes. It's scary sometimes, leaving the comforts of the family home in the mornings to make the long trip to work. I open myself up to stares, taunts and it scares me, knowing that today could be the day some unwitting person sends me on a further downward spiral, alienating myself from such an unforgiving environment that is The World, it's not only Hong Kong or Mainland China, I'm talking the World. I don't know how some days I manage to block the shit out, but some days, I'm filled with such anger and sadness that it builds up and escalates into something more. </div><div><br></div><div>Like many people with Ichthyosis, our lives consist of struggling to get society to accept us, to understand that beauty is skin deep but there is so much more to our lives than just an appearance in which skin sheds, we look permanently sun burnt and as a result, we have to work extra hard to get people OUTSIDE our close circle to understand that we have dreams and aspirations too. We are not thick people just because we look different. I know this well because aside from Ichthyosis, I have a few friends in Hong Kong who face the wrath of society, just trying to get by on life while dealing with physical disabilities. If anything, society, especially where I live, society could learn a thing or two from the people they so happily shun away since they are probably the nicest people on the planet who are just screaming for people to take them in their arms and work on that little thing called Inclusion. </div><div><br></div><div>Am I scared of what the future holds for me? Both in society and in life? Yes, I'm terrified and sometimes I turn to Facebook which isn't the wisest idea at times, but it helps me try to decipher what I have or I could have. </div><div><br></div><div>Occasionally I write on Facebook about people who have hurt me that day and I receive a ribbon of support from people telling me to keep me chin up and to keep fighting through because they know I am capable of doing so. I have a lovely friend who has unfortunately left for Down Under...(I like kangaroos and koalas!). But she reads my posts a few times and offers sage advice but something she pointed out made me think she truly understood. When people post negative comments, it's customary to get a barrage of support. But in essence, she said this, I hope you don't mind Kaye!</div><div><br></div><div>"Easy to make supportive comments, but basically it sucks and you are one of the most amazing people I know ... Don't know if I could do what you do. Lots of love & hugs ... And a few tears. Ga yauh!!! " </div><div><br></div><div>It's easy for people to say things like "chin up" and "don't let people get to you" but the fact of the matter is, that it does and people often don't realise, and I am equally guilty as sin. But what people who offend don't realise, they make their comments without realising that the other person is already scarily fragile and that comment, may sometimes be the final straw and the other person just crumbles. And unfortunately, people who give love and support can't really offer anything but words because especially in my case, chances are, my lot would go up to the offending person and basically scare them shitless. Let me give you a little anecdote from a night down at the pub a while back. </div><div><br></div><div>I have known people in Sai Kung, where I live since the day my parents brought me home to Sai Kung, so basically I have a massive extended family whom I love very much. But I was sitting outside with a family friend called Peter King who has known me since I was 3 and having a lively chat about work and how it's hard for expats and those who don't speak Chinese to get good solid work if you're not with the 'banker wanker' lot. But there was another bloke sitting there as well listening to the conversation. But as we were talking, he seemed to be a nice person but as soon as Peter got up to do something, he turned around to me and said, 'please don't take this the wrong way but you look really burnt and not very pretty'. His words stubbed me to the core and the anger building up inside of me was horrible, like a bubbling cauldron and I knew I had to leave before I did something I regretted. I quickly found Pete and made my excuses and explained what they guy said before leaving for home which is about a 10 minute walk away in the first village leaving the town. I texted another friend for Pete's digits as I wanted to make sure all was okay and that he didn't beat the guy up though by the look on his face when I left I couldn't be sure. When I explained why I needed his number, it all came spilling out and effectively I was so sure I'd have to deal with the ignorant soul myself, it never occurred to me to ask for help around me, as someone else quoted later, "Mui wanted to solve her own battles". It didn't occur to me that I didn't have to leave as abruptly as I did because I had an army of Liverpudlians and friends to rally around me and that's what's so good about Sai kung. Whether you have been here for a day, a month or a lifetime, we look after each other and no one, thick or clever has to fight battles on their own. </div><div><br></div><div>I challenge you and every person who makes snarky remarks and damages the confidence of the people around them to take a very good look at themselves and to think , "what if I was in their shoes, how would I feel?!" Go on.</div>Anonymoushttp://www.blogger.com/profile/18396188637192158196noreply@blogger.com1tag:blogger.com,1999:blog-568276222321456065.post-65851835729129889402014-07-16T07:51:00.001-07:002014-07-16T07:51:15.387-07:00The IchthyRef Tackles Social Media<div><br></div><div>I have many praises for social media, I do. But we all know that's a cut throat past-time where whatever you post online is for all to see. People all over the world are able to see the good, the bad and the ugly. That's just the way the internet is and unfortunately in some ways, social media makes or breaks you. The IchthyRef has tackled her fair share of social media issues and figured that maybe, sharing some tips and scenarios could help educate others. </div><div><br></div><div>Instagram is something we all love, right? I mean posting photos of sexy sandy beaches and one's food is always somehow entertaining for random followers. I've been on it for about 9 months now, well since I got me a new iPhone which was about 9 months ago! I love posting pictures depicting things I do every day or things I find amusing. But with all things on social media, I've had to excercise caution just because there is always some chick who has never seen someone with Ichthyosis before and will make unkind remarks. But with so many things, you make the decision to post your life online, you deal with the outcome, you clap like a maniac when you get a like for your bowl of noodles and you wail like an idiot if someone comments about your thunder thighs being too chunky!</div><div><br></div><div>Do you remember those days back when one lived on MSN messenger? You'd race home, turn on the computer and start conversations? Maybe turn the USB webcam on too? Well I was no different and I loved using it. I recognised most if not all of my contacts so I knew who I was talking to. It was an unfortunate incident that I clicked 'accept' to an unknown person and in my naivety, thought I could trust everyone I chatted with. </div><div><br></div><div>That incident led to effectively hate mail and believe me, sh!t truly hit the fan and it made me determined to cross check unknown contacts in the future. </div><div><br></div><div>Sometimes if a person I don't know adds me on Facebook, despite the fact we may share mutual friends, I send them a quick message to double check if I really do know that person. Sometimes it just needs a little recap since I meet so many people wherever I am, it ain't easy recognising names! </div><div><br></div><div>But sometimes. Even if you don't accept a request, people can still contact you and even if it isn't malicious, but it's suggestive and makes you feel like a lump of poop, don't do what I did and run to Facebook asking for help. Yes I could have done that and after all I am an adult of 21 and a half, but would that really have helped anyone? If people were sending you threats to kill yourself and commit hari kiri, then sure, the police is the way to go. But if you are being sent messages asking if you love the sender and want to be his girlfriend, either, ignore the twit, block him if needed and keep an eye on it. And if things escalate, one needs to carefully take further action. But otherwise, what good will it do?</div><div><br></div><div>I've just come out of teenage years and while some might speculate whether I'll ever truly grow up into an adult (I'd love to remain young, life is so carefree!) I have posted negative and bitchy comments on Facebook and Twitter. In some ways, it's a way of life, but especially for someone like the IchthyRef, when one already stands out, your comments are taken into account and your persona is built from how you act on social media. It can actually make or break job applications, university acceptances, or in general, it can make it break YOU. It doesn't matter whether you're a lovely fluffy human being in person, it's your online life that's affected as well. </div><div><br></div><div>I've made lots of social media rookie mistakes and I'm not truly thrilled about my past behaviours online. Of course I've recommitted cardinal sins. But ultimately. You need to to responsible about using it. Because funnily enough, some people actually want to know good things in life. </div><div><br></div><div>What's that people say?</div><div><br></div><div>The good things should always override the negatives?</div><div><br></div><div>Something along those lines...</div><div><br></div><div> </div>Anonymoushttp://www.blogger.com/profile/18396188637192158196noreply@blogger.com0tag:blogger.com,1999:blog-568276222321456065.post-71776785688354007062014-06-15T07:54:00.002-07:002014-06-15T07:54:53.226-07:00The IchthyRef Does Q&A Part 2<span style="font-family: Arial, Helvetica, sans-serif;">I'm back! And here is the second part in my Q&A for Ichthyosis!</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">This time, my volunteers are, Melanie Luther, Courtney Westlake and Carly Findlay!</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">Hope what you read below is somewhat helpful :)</span><br />
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<span lang="EN-US"><span style="font-family: Arial, Helvetica, sans-serif;">Melanie Luther <o:p></o:p></span></span></div>
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<span lang="EN-US"><span style="font-family: Arial, Helvetica, sans-serif;">I first met Melanie through Facebook through
the Ichthyosis Support Group, literally last year, this time…happy Facebook
Anniversary, Melanie!<o:p></o:p></span></span></div>
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<span lang="EN-US"><span style="font-family: Arial, Helvetica, sans-serif;">Melanie asks: <o:p></o:p></span></span></div>
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<span lang="EN-US"><span style="font-family: Arial, Helvetica, sans-serif;">My daughter is very shy and when people say
unkind things she just doesn't know how to handle it so just puts her head down
and ignores them. But, I know this affects her deeply and she gets really
upset. If anyone has any tips for her I would be very grateful xx<o:p></o:p></span></span></div>
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<span lang="EN-US" style="color: red;"><span style="font-family: Arial, Helvetica, sans-serif;">Having a visual difference is
difficult for anyone and unfortunately, it’s going to happen whether we like it
or not. I’m a terrible person to ask about handling people when they say unkind
things because I have a habit of retaliating and sometimes making things worse.
People who don’t have to go through such taunts as often as us often say
something along the lines of “just ignore it”, or “don’t let it get to you”, or
“you’re so much stronger than them”. Now this is all great and dandy, but there
does come a point when it just gets too much and your head (metaphorically) explodes
in frustration and sadness. Of course, if somebody makes a cruel remark about
your appearance, you’re not really going to shake it off because it still
hurts. I suppose my best advice would be, to talk, if something has upset you,
talk, don’t think about how your issues may upset your mum, dad, or whomever,
because they are there for you in god times and in bad. And holding in emotions
will just cause more hurt. <o:p></o:p></span></span></div>
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<span lang="EN-US"><span style="font-family: Arial, Helvetica, sans-serif;">Courtney Westlake<o:p></o:p></span></span></div>
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<span lang="EN-US"><span style="font-family: Arial, Helvetica, sans-serif;">Courtney has an adorable family and an
adorable daughter with HI called Brenna (I hope wrote it right!) I first knew
of Courtney when more Ichthyosis Support groups started popping up and
subsequently, my parents were in touch with her and her husband Evan.
Admittedly, I was still cautious of making contact as I was still uncomfortable
of the idea of Ichthyosis networking. I was still relatively incognito at this
stage until my cover was blown by her husband’s Aunt, Jennifer, at which point
I thought it was time to crawl out from my shell and make myself known to
mankind…Hi World!<o:p></o:p></span></span></div>
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<span lang="EN-US"><span style="font-family: Arial, Helvetica, sans-serif;">Courtney has a blog as well, I think you
should check that out too!<o:p></o:p></span></span></div>
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<span lang="EN-US"><span style="font-family: Arial, Helvetica, sans-serif;">http://www.blessedbybrenna.com<o:p></o:p></span></span></div>
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<span lang="EN-US"><span style="font-family: Arial, Helvetica, sans-serif;">Courtney Asks:<o:p></o:p></span></span></div>
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<span lang="EN-US"><span style="font-family: Arial, Helvetica, sans-serif;">You seem really active, what special things
do you do for your skin/temperature to participate in activities and sports? <o:p></o:p></span></span></div>
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<span lang="EN-US" style="color: red;"><span style="font-family: Arial, Helvetica, sans-serif;">I’d like to think I am relatively
active and with many things, it’s taken a bit of common sense, a few facebook
messages, networking and an open mind. <o:p></o:p></span></span></div>
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<span lang="EN-US" style="color: red;"><span style="font-family: Arial, Helvetica, sans-serif;">With regard to skin and
temperature during activities, it takes a bit of common sense and knowing your
own limitations. For example, when I do a day of rugby refereeing at a
festival, we usually work in teams. I usually tell my team (who all already
know me, but there’s always going to be someone who forgets) that I will do a
few matches before stopping for a LONG water break and aircon. This happens
especially in the summer months where temperatures can reach up to 34c
centigrade and shade is scarce. For me, its all about pacing. The tradeoff is
that while the rest of my team run out during the hottest hours, I pick up on
the final few matches of the day while they head for the beer tent to spend
their beer tokens, it’s a win win! <o:p></o:p></span></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;"><span lang="EN-US" style="color: red;">I think drinking (the
non-alcoholic kind!) is key, and so is knowing your limits when to take time
out. You need to remember that when you are participating in a team sport or
doing activity, you are doing it, while knowing what could potentially happen.
That being said though, I go out of the house with every intention of enjoying
my time. And if I do come home with a fever, sun burn or just plain tired out,
I just take care of it…or complain on Facebook </span><span lang="EN-US" style="color: red;"><span style="mso-char-type: symbol; mso-symbol-font-family: Wingdings;">J</span></span><span lang="EN-US" style="color: red;"><o:p></o:p></span></span></div>
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<span lang="EN-US"><span style="font-family: Arial, Helvetica, sans-serif;">Also it appears your parents have always
encouraged you and not limited you at all - how old were you when you began to
do some of your own skin care? Any other tips for fostering independence as our
kids grow up? Thanks!<o:p></o:p></span></span></div>
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<span lang="EN-US" style="color: red;"><span style="font-family: Arial, Helvetica, sans-serif;">My parents are the most incredible
people in the world (I’ll scream that) and I know that sometimes we butt heads
(metaphorically, there’d be a lot of concussion and trips to hospital if we
actually headbutted enough times!). But certainly, my parents have never
stopped me from trying to do things. Just because I have HI, does not mean that
life has to end there. Okay, so, we all know why the IchthyRef is called the
IchthyRef. I originally wanted to play full contact rugby at 16 (should have
started at 5, but my health was a bit too fragile at that point), that wasn’t
going to happen after I was running the risk of brittle bones and osteoporosis.
A few tears and loud moody strops later, my parents encouraged me to get down
to the local (not really, it was a 45 minutes journey to the pitch!) rugby
ground, DeA Tigers and see if I could help out. I should point out that I
actually wanted my parents to come with me on my first meeting, but was told
that if they did, there would be a lot of “talking over me” and I wouldn’t be
able to demonstrate my full potential. So after checking out the club, I got in
touch with the girl’s rugby coach, Tui and after a couple of weeks helping her
and generally being her “biatch”, a matchday Sunday came up and I was put in
contact with a member of staff, Steve Jones from HK Rugby. He had done his foot
and was in a ski boot and luckily for me, I was to run errands for him most of
the day! This basically jumpstarted my “no rest for the wicked” as most
weekends, I would be catapulted across the whole of Hong Kong, assisting in
match days before some chap (probably Steve) who mentioned that I would be a
good referee and that they were recruiting. A couple of emails later and I was
sitting in the Police Officers Club, attending my IRB Level 1 Match Official Course,
preparing to train as a rugby ref. That’s just reminded me, I’m due to retake
my accreditation this year! This is the same where Sailiability (sailing for
the disabled) is concerned, it’s merely a case of checking things out and if
you like it and think you and others will benefit from it, go for it!<o:p></o:p></span></span></div>
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<span lang="EN-US" style="color: red;"><span style="font-family: Arial, Helvetica, sans-serif;">Secondly, my parents have always
had a mantra of “give it a go”. Because if it doesn’t work, well, that’s okay.
That’s the same with many of the things I’ve done. I’ve been terrified, I’ve
gone and done it, and I’ve survived! So yep, give things ago, there’s no harm
in trying! And with the rough and tumble stuff? We just dealt with the cuts and
bruises afterwards, with a bit of humour and ‘I told you so”.<o:p></o:p></span></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;"><span lang="EN-US" style="color: red;">As with skin care independence, I
think that started at about 16? I’d have to double check that. But at that
point, that was really creaming my eye lids to stop them stretching out too
much. I’m still shockingly lazy when it comes to my skin care keeping on top of
things, but that’s something one will only learn in the long run (or in my
case, the eternity-run) but I will say since we attended the FIRST conference
in Seattle in 2002, (the same year I met Hunter, Merritt, Laura and Katie), I’ve
become almost anal about never leaving the house without a tub of Vaseline to
lube up my eyelids. So I suppose that’s part of the skin care already sorted </span><span lang="EN-US" style="color: red;"><span style="mso-char-type: symbol; mso-symbol-font-family: Wingdings;">J</span></span><span lang="EN-US" style="color: red;"><o:p></o:p></span></span></div>
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<span lang="EN-US"><span style="font-family: Arial, Helvetica, sans-serif;">Carly Findlay<o:p></o:p></span></span></div>
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<span lang="EN-US"><span style="font-family: Arial, Helvetica, sans-serif;">I heard about Carly a LONG time ago, I
believe my dad introduced me to one of her articles or I might have picked her
up on Twitter, I can’t remember, but I think we will both admit, we got off to
a rocky start when one of our first encounters on Facebook involved a photo of
me in my graduation ball gown. She commented on how we looked alike and how we
had a similar bone structure. I quickly quaffed that idea and quite bluntly
told her so and that we didn’t look remotely similar. I was resoundly informed
of my interesting behavior online and wrote an apology to Carly, explaining that
she was the first person to have commented on anything regarding Ichthyosis
since at that point, I was living the life of an Ichthyosis sufferer in denial.
I am pleased to say however, we have patched things up and I was lucky enough
to be included in her Ichthyosis Awareness Month 2013. She also runs a great
blog too, she does web design much better than the IchthyRef!<o:p></o:p></span></span></div>
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<span lang="EN-US"><span style="font-family: Arial, Helvetica, sans-serif;">Check it out at,<o:p></o:p></span></span></div>
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<span lang="EN-US"><span style="font-family: Arial, Helvetica, sans-serif;">http://carlyfindlay.blogspot.com<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></span></div>
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<span lang="EN-US"><span style="font-family: Arial, Helvetica, sans-serif;">Carly Asks:<o:p></o:p></span></span></div>
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<span lang="EN-US"><span style="font-family: Arial, Helvetica, sans-serif;">My question is how do you keep resilient,
especially after the house hunt ordeal? How do you laugh at it? Again feel free
to use names and link back.<o:p></o:p></span></span></div>
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<span lang="EN-US" style="color: red;"><span style="font-family: Arial, Helvetica, sans-serif;">Truthfully, I don’t know how I do
keep resilient, because I certainly don’t feel like I’m a resilient person when
it comes to being metaphorically slapped in the face. Especially with the house
hunt incident, I had already braced myself for a reaction of some sorts,
because that’s just a way of life for me. Everywhere I go, everyone I meet, I
absolutely feel the need to keep up a protective barrier for myself because the
hurt and sadness can come almost instantaneously. While I’m always prepared for
the “oh, you look burnt”, “were you in a fire”, etc comments, I was not
prepared for when she sprouted out her attack when she said really quite
openly, that she thought I was incredibly ugly and that I was too ugly to share
with anyone. It is unfortunately well known in Asia that people react
differently to situations. I’ve noticed that while the Western world is
somewhat more discreet in their shock toward difference, the Asian world is
more outward with their reactions, they will waste no time in displaying their
emotions toward someone. Sometimes, you have to really laugh at the situation
that you find yourself in because it’s the only way to move forward. You
sometimes at to laugh at people’s ignorance and having lived in a part of the
world where ignorance is not bliss, you have to learn to roll with it.<o:p></o:p></span></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Remember, if anyone has any questions, feel free to shoot me a question, be it via Facebook on my IchthyRef page or through Twitter...or just message me! </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Thanks for reading!</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">xx </span></div>
Anonymoushttp://www.blogger.com/profile/18396188637192158196noreply@blogger.com0tag:blogger.com,1999:blog-568276222321456065.post-91652647718620806172014-06-05T08:01:00.001-07:002014-06-05T09:08:03.284-07:00The IchthyRef does Q&A Part 1<div>When I started this blog, I had a thought.</div><div><br></div><div> Having HI is a rare event and along with living away from physical face to face support is sometimes tough when I want to find something out. Being in the older tier of sufferers, I'm up with, Nusrit Shaheen, Ryan Gonzales, Stephanie Turner, the Betts sisters and Hunter Steinitz. To have clung on for this long is a pretty cool thing to have achieved and I will brag about it! I sent a message to a few Ichthy mums with a plan to do a Q&A about Ichthyosis and life for me in general. If I can give a tiny insight into living a life with Ichthyosis, then I will try and tell it as truthfully as possible. I got lots of questions and I'm working my way through but here is Part 1. With permission from the mumsand friends, I have shared their questions along with a link to their own individual websites.</div><div><br></div><div>D.e. Fasciano</div><div><br></div><div>I was introduced to D.e. and Evan through Facebook a while back. We have a ton of mutual connections through Ichthyosis Support on Facebook. Truthfully, it's a little hard to remain incognito on Facebook, but here we are and she's sent me a couple of questions. D.e is from the States and has a son with HI called Evan and another little bub on the way. Their website is:</div><div><br></div><div>http://ouryoungwarriorevan.blogspot.com</div><div><br></div><div>D.e. asks:</div><div><br></div><div>What is your skin routine like?</div><div><br></div><div>My skin care routine is actually really lacking in continuity and pattern. Each morning involves a quick(25 mins approx) bath in my Japanese inflatable bathtub. It's not common in Hong Kong to find a house with a built in bath tub due to lack of space. I have a removable bath tub in which I have my daily bath. After using either hospital-prescribed emulsifying ointment or regular shower gel or whatever happens to be on the window sil, I then follow that with a liberal smearing of paraffin ointment or if I'm feeling in the mood which is incredibly rare, urea cream. Then it's off to the bedroom to choose my clothes for work, typically jeans and a tshirt. I've found that most materials are okay on my skin, but one thing I prefer to avoid wearing are tights. I have a love hate relationship with them as I've found that my skin dries out faster when I wear them. I carry a couple of jars of paraffin ointment in my daily backpack and I try to make a habit of keeping a pot on my desk so that if my arms and face get a bit dry during the day, I have a supply on hand. Admittedly, I do not do full body creams more often than that one time in the morning and possibly after my evening bath (if I manage to not be lazy about it). I should probably do it more often, but since Hong Kong is incredibly humid pretty much all year long, except for maybe two months in winter, I certainly don't reapply as often as those in drier climates. Maybe I should. I should point out that I sometimes use Bodyshop or Lush products in the bath. I like these brands as the products are gentle on my skin and are made from mostly natural ingredients. They are not cheap though, but I do like to treat myself from time to time :)</div><div><br></div><div>Does your skin hurt when you get sick (fever, cold)?</div><div><br></div><div>I'm relatively healthy but like everyone, I do get sick and I've found that intend to suffer more if I overheat in the sun. Skin wise, I suppose I could liken the feeling to feeling sunburnt. If I have fevers, which still happen, either consciously or subconsciously, I have experienced something that's tantamount to being slapped with a brick wall of heat and it takes a thermometer, lots of ice water, fans, air conditioners and maybe some regular paracetamol and a cold bath dunk. Luckily, I get more sunburnt than fevers these days. But living in HK especially, the worry of getting sick is never far away. </div><div> </div><div>Does the ocean water bother you? </div><div><br></div><div>Or did it when you first tried swimming in the salt water?</div><div>This is really interesting actually because up until about a year ago, I avoided going into sea water as I didn't enjoy the salt getting onto my skin. However, over time, I've realised that as long as there is clean water supply nearby, I'll be fine. You can't actually stop me going into the sea if the chance allows! I do stay away from super dirty water though, I'm fussy in that I will only go into clear waters!</div><div><br></div><div>Do you notice a difference in your skin in HK compared to UK visits?</div><div><br></div><div>Dry and more cream. The temperature is a pleasant change though! In all honesty, I haven't been over enough times to really give an opinion. Health wise, I suppose I'm breathing cleaner air than the polluted air of HK but skin, I've found the climate is drier and for someone who is acclimatised to the humidity of Asia, coming over to the states or Europe is a bit of a shock to the system. But as with all people, you get acclimatised to where you live and you just may be used to creaming more often that you don't really notice the dryness. </div><div><br></div><div>Lucy Betts</div><div><br></div><div>I've known of Lucy for a long time, way before Facebook came to the fore and if memory serves, the Betts and my folks used to communicate to learn more about dealing with the little terror that I am!</div><div><br></div><div>Lucy asks:</div><div><br></div><div>Do you find you have other health problems related to your skin?</div><div>I wouldn't say I'm completely problem free as I have had a couple of situations with weak bones and my lungs aren't truly amazing as my skin was wrapped so tightly around my body when I was born which restricted some lung function, but so far so good. I'm very very lucky that I have a family doctor who looks after me incredibly well and I am forever grateful for her presence in my life as she has picked up on things my hospital doctors haven't. Not to say they suck, they're amazing people, but sometimes, time and clarity is compromised in a busy hospital environment. I've had a period of iron deficiency, solved with chocolate flavoured chewable tablets, I'm yearly monitored for bone density (now in great shape). I'm lucky that I'm relatively fit and my doctor reckons that with the activity I do during the sailing and rugby season, my immune system and overall well being has greatly improved. I hope it stays stable. </div><div><br></div><div>Do you find you have a lot of allergies?</div><div>Luckily, touchwood, I haven't experienced any allergies, yay me! I may have tried to fake an allergy to get out of eating a certain vegetable, but I'm sure we've all been there! And I still won't touch broccoli!</div><div><br></div><div>Can you go on the beach without it irritating?</div><div>I've answered this question already. As long as I'm cut free and there is clean water supply nearby, I'm absolutely fine. </div><div><br></div><div> Do you find being out in the sun hard?</div><div>I'd love to say I'm so used to hk and it's bright weather but truthfully, I find it difficult because heat is trapped in my body, which means sweating is not an easy thing. Although I may post pictures of me being out in the sun, I do try and stay in the shade as much as possible, I use wet shirts or if I'm out doing outdoor activities, I rinse my shirt under a cold tap before putting it back on. It keeps me cool for a bit and I sometimes do the same to my hat and maybe my shorts. Instead of just drinking cold water, I sometimes drink sports and electrolyte drinks because not only do they taste reasonable, they also give me a bit more energy as the sun does wear me out. A couple of time more than not, I have come back home sunburnt out of stupidity. I just deal with it with some ice and aircon and maybe some aloe Vera gel and I'm good to go. I'm lucky in that if I get sunburnt, the effects are pretty much gone by the next day. </div><div><br></div><div><br></div><div>Jennifer See</div><div><br></div><div>I met Jennifer through Facebook as she helps try to connect sufferers and their carers. Like D.e, I saw her name floating about and resisted clicking the "accept button" because at that point in time, socialising with people with Ichthyosis was not on my agenda, I feared did be stereotyped. I wanted to pretend that I didn't have a condition. But sometimes, life doesn't pan out the way you want it. But I'm so glad to know Jennifer as she's a fabulous "ear" when I feel compelled to compare Asian cultures against Western cultures(Jennifer has a really awesome mixed race family!)</div><div>Her website is</div><div>http://confettiskin.com</div><div><br></div><div>Jennifer asks:</div><div><br></div><div>What's the most bizarre thing anyone has ever said to you about your skin?</div><div><br></div><div>I was with a friend at her school fair (we went to different schools, though I very nearly moved there) and as we were about to grab a taxi to leave, I nearly knocked over a teacher carrying her camera. I apologised, she looked up and remarked, "wow, that's a pretty impressive face painting you got there! Can I take a photo?! (I rarely bother slapping paint on my face, it looks wrong!)". I was stunned, I turned away and climbed into the waiting taxi, shocked and the on the journey back, it hadn't really hit me that hard. My friend and I just laughed about the pathetic nature of it and to this day, we still giggle about the absurdity and innocent ignorance of that teacher. </div><div><br></div><div> How do you normally handle rude people? </div><div><br></div><div>I don't! It's incredibly irritating and I try not to waste my energy on the stupidity of certain people. Though it pisses me off to no end when mums shield their child's eyes, the best I can do is roll my eyes and be knowing that those people are narrow minded. I have done worse things in the past. But unfortunately, with life comes challenges and sadly, I will likely have to deal with arseholes for the rest of my life. It's a matter of finding a way forward. Knowing chinese cuss words helps...sometimes!</div><div><br></div><div>How does the culture in Hong Kong affect your ability to network with other affected people in the city?</div><div><br></div><div>I don't know what to make of HK culture, on one hand, it great that people are willing to share good moments, but when tragedy strikes, getting anything out of people is like prying open a stubborn mussel. Locals tend to keep bad news and misfortunes to themselves for fear of coming out as weak and shunned. I haven't really had the chance to meet any affected Ichthy sufferers in Hong Kong. I did try corresponding with a mother with a Nethertons baby but kept hitting brick walls to the pout where I just let things be and told her, if she wants to meet or know anything Ichthy related, I'm there. And I expressed that I do understand the nature of living in HK with a disfiguration. However, I have been lucky in that because of my nature and will to fight, I am more at ease about meeting other sufferers, just not sure if HK is really ready to tackle through like I am. </div><div><br></div><div>That's Part 1 done, I'll work on the next batch soon!</div><div><br></div><div>Xxx</div><br><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhTPbfTIyHoih26lT4WncwR9nAqdIoSBHRS2DrMMeHLjX0skqPARSdEQEHQ0qcW9fszCIl_ZHIqLe_Ubxf4gXvQh-U7Msf7xVYFJSCfsjPfN_L1tpYzvAhP3OwAsrMIWzogRSCI2BW9Vt4/s640/blogger-image-2139381068.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhTPbfTIyHoih26lT4WncwR9nAqdIoSBHRS2DrMMeHLjX0skqPARSdEQEHQ0qcW9fszCIl_ZHIqLe_Ubxf4gXvQh-U7Msf7xVYFJSCfsjPfN_L1tpYzvAhP3OwAsrMIWzogRSCI2BW9Vt4/s640/blogger-image-2139381068.jpg"></a></div>Anonymoushttp://www.blogger.com/profile/18396188637192158196noreply@blogger.com0Hong Kong Hong Kong22.387146 114.26811tag:blogger.com,1999:blog-568276222321456065.post-5331597682014584342014-05-25T10:44:00.001-07:002014-05-25T10:44:02.726-07:00Take a Leap of Faith...it Works.<div>You can't have everything in life</div><div><br></div><div>I'm back with a few thoughts and this time, it's rugby and flat hunting as well as Hong Kong mannerisms. Stay tuned. </div><div><br></div><div>So let's start with the perils of flat hunting. It's a task, I'll be honest with you. It ain't easy. And it's certainly ain't easy when you're dealing with a potential flat mate with Ichthyosis. You as a civilised human being might possibly be dealing with blocked drains full of God only knows, oily and creamy furniture, prolonged periods in the bathroom, shedding skin despite ones best attempts. And that's before the tics and habits of the other person! That's exactly why my parents have suggested I share with a mate or even on my own in an airing cupboard. I know that my time will come soon when I will find the place that works for me and my situation. It'll also take a lot of patience and love as a team effort for this to work. But I know it'll happen one day. Be that now in a week or in a month. But I know that for one thing, announcing my intention to move out of home on Facebook was absolutely not one of my finest moments. For anyone concerned. </div><div><br></div><div>Next up, rugby in Hong Kong. Now let me tell you, and I know I'll sound like a stuck up arse but Hong Kong is doing good things in the world of international rugby. Women's came 2nd overall in the recent Asian 4 nations while Men have just lost against japan in the Rugby World Cup Asian Qualifier. But they'll go on to play Uruguay later in the summer. (Did I ever tell you that HK summers are a fuxking nightmare?!) anyhow. As you all might know, in a member of the Hong Kong Society of Rugby Football Union Referees. Basically we kick the muddy backsides of muddy wingers, fullbacks and scrumhalfs. And we are pretty damn proud and I am so lucky to be a part of this all because you know what, it takes balls to sign up as a match official and get everything under the sun (rhetorically) chucked your way. But since contact rugby isn't an option for me, this certainly is. And I've not met another community as chaotic, mad, rambunctious as the Hong Kong Rugby Football Union. Apparently I'm the talk of the convo amongst my family in the uk...can you imagine (our Mui, a rugby referee, she'll be the next Nigel Owens!). I somehow doubt the eloquance of that but there's a thought! </div><div><br></div><div>There's been a load of stuff in the news regarding hk vs the mainland and quote frankly, it's getting boring. It isn't fair to assume that those up north are less civilised than us HKers. Well guess what folks, Hong Kong seem to think that anyone who thinks differently is a loser. Well, anyone who isn't from Hong Kong! Look, I was born and raised in Hong Kong and I reckon it would be fair to say that I've adopted a fusion way of life. While I eat like a pro local (think chopsticks and the very strangest of food and eating habits), I live and breathe like a pro "gweilo"(white female ghost). So I think I have the advantage of seeing things both ways. And yes, I will admit I have a fear of meeting people from mainland China, but that's a whole different post.</div><div><br></div><div>I leave you with the lyrics of Kutless, What Faith Can Do. Listen to it on YouTube, it's a beauty and truly exemplifies life and it's challenges.</div><div><br></div><div><div><span class="Apple-tab-span" style="white-space:pre"> </span></div><div>"What Faith Can Do"</div><div><br></div><div>Everybody falls sometimes</div><div>Gotta find the strength to rise</div><div>From the ashes</div><div>And make a new beginning</div><div><br></div><div>Anyone can feel the ache</div><div>You think it's more than you can take</div><div>But you're stronger</div><div>Stronger than you know</div><div><br></div><div>Don't you give up now</div><div>The sun will soon be shining</div><div>You gotta face the clouds</div><div>To find the silver lining</div><div><br></div><div>I've seen dreams that move the mountains</div><div>Hope that doesn't ever end</div><div>Even when the sky is falling</div><div>I've seen miracles just happen</div><div>Silent prayers get answered</div><div>Broken hearts become brand new</div><div>That's what faith can do</div><div><br></div><div>It doesn't matter what you've heard</div><div>Impossible is not a word</div><div>It's just a reason</div><div>For someone not to try</div><div><br></div><div>Everybody's scared to death</div><div>When they decide to take that step</div><div>Out on the water</div><div>It'll be alright</div><div><br></div><div>Life is so much more</div><div>Than what your eyes are seeing</div><div>You will find your way</div><div>If you keep believing</div><div><br></div><div>I've seen dreams that move the mountains</div><div>Hope that doesn't ever end</div><div>Even when the sky is falling</div><div>I've seen miracles just happen</div><div>Silent prayers get answered</div><div>Broken hearts become brand new</div><div>That's what faith can do</div><div><br></div><div>Overcome the odds</div><div>You don't have a chance</div><div>(That's what faith can do)</div><div>When the world says you can't</div><div>It'll tell you that you can</div><div><br></div><div>I've seen dreams that move the mountains</div><div>Hope that doesn't ever end</div><div>Even when the sky is falling</div><div>And I've seen miracles just happen</div><div>Silent prayers get answered</div><div>Broken hearts become brand new</div><div>That's what faith can do</div><div>That's what faith can do</div><div><br></div><div>Even if you fall sometimes</div><div>You will have the strength to rise</div></div><div><br></div><div><br></div><div>Okay, it's late and I'm working soon!</div><div><br></div><div>Xxx</div>Anonymoushttp://www.blogger.com/profile/18396188637192158196noreply@blogger.com1tag:blogger.com,1999:blog-568276222321456065.post-38352694612281691822014-05-09T00:19:00.001-07:002014-05-09T00:19:09.735-07:00Life Is What You Make It (not the Hannah Montana song)21 years does not mean you've lived your life. I know that much because my parents have taught me that.<br />
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Here's a mash up script of a speech I presented to the Royal Commonwealth Society back a few years ago.<br />
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My Plan</h1>
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An ideal way to introduce myself</div>
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<br />Welcome everyone, thanks so much for having me here today. Risks. What are they? They are what make up everyday life. I’d like to share a poem, a great friend gave me on Valentines Day of 2012. The poem is by an anonymous author but it is one very powerful one:</div>
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To laugh is to risk appearing the fool.<br />To weep is to risk appearing sentimental.<br />To reach out to others is to risk involvement.<br />To expose feelings is to risk exposing your true self.<br />To place your ideas, your dreams before a crowd is to risk their loss.<br />To love is to risk not being loved in return.<br />To live is to risk dying. To hope is to risk despair. <br />To try is to risk failure.<br />But risks must be taken, because the greatest hazard in life is to do nothing.<br />The person who risks nothing, does nothing, has nothing, and is nothing.<br />They may avoid suffering and sorrow, but they cannot learn, feel, change, grow, love, live.<br />Chained by their attitudes, they are a slave, they forfeited their freedom.<br />Only the person who risks can be free</div>
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<br />We have to take a risk everyday. I have to take a risk. My risk is stepping out of the house each day ready to face the day. Its not easy when you have the constant fear that people are going to at some point stare and make cruel remarks towards me or really, towards anyone who doesn’t conform to a certain society. I, like the rest of you, live in Hong Kong. Hong Kong is a great place to live in, but also incredibly judgemental. You take a big risk when you tell someone what you do for a living. I happen to know that’s pretty much the same if you are an actor. As Richard E Grant mentioned in a few interviews, if one is unknown and unemployed in LA, you might as well walk around with a plaque stuck to your front saying “I’m a leper”. Whereas if you are unemployed in London, you’d fit in much easier because you’re not making a big deal out of it. I’m sad to say, I could liken Hong Kong to LA. Despite the fact that life is like an 8 ball for me, I refuse to allow difficulties hinder my life.</div>
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So many people tell me that they cannot believe that I can just walk out of the house with a happy smile plastered on my face. Let me tell you, it’s not easy and I would like to relegate that by delving into my past. Are you ready? It’s going to be a white knuckle ride!</div>
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I made my entrance into the world 22nd December 1992. I was not a normal baby. I was born with thick leathery scales of skin, resembling something like a person in a Harlequin costume, hence where the name of my condition comes from. basically, I have Harlequin Ichthyosis. It truly is a blessing that I am here talking to you because doctors originally beloved that due to the severity of my condition, I was not expected to live past the age of five. For those of you who don’t know what ichthyosis is, it is a group of genetic skin conditions which range in severity and put simply, Harlequin Ichthyosis is effectively the rarest of the lot and unfortunately, there is no cure. I am assuming that this was a main factor of me being given up for adoption after birth. But fast forward a few years and I was taken in and adopted by my parents, Tina and Rog, who I hope are somewhere in this room. My birth parents gave me up as I presume they just weren’t equipt to deal with a baby who wasn’t normal in their eyes. But I keep thinking to myself, if i was not adopted, I wouldnt be here talking to you now.</div>
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They took a risk in adopting me because when you are born effectively parentless and disabled, you might as well be forgotten by the government and placed at the very bottom of a pile of potential adoptions. Against the better judgment of so many, my parents ploughed on with the adoption despite warnings that I wouldn’t survive and quite honestly, they must have done something right because look where I am today, I’m in front of you, not cremated or six feet under the ground.</div>
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Yes, my early years were ploughed with problems, both health wise and socially. I faced and still do face discrimination, constant worries about my health and the like but the funny thing is, despite all this, my parents have never hidden me away or mollycoddled me. It really was a matter of do you want to have a happy day or a sad day?</div>
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I can still remember many many years ago, when I must have been about five or so, I would be lying on the floor with my dad all upset because I faced some kind of hardship during the day and in the way that you’d talk to such a young child, my dad somehow made it sound like it was going to be okay. As young as I was then, I was also relatively mature for my age because you kind of need to be when you face a daily battle against your will.</div>
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I will admit that I was not the easiest to handle because I could never accept that the true issue was that I could not accept that I was never going to be normal. But I believe that slowly, that is starting to change. I suppose I could like to an eating disorder; you may get over it, but it is always going to be there. Meaning that I might accept that I am not normal, but that insecurity will always be somewhere nearby.</div>
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Today, I would like to hopefully help you think of things differently whenever you encounter difficulties in your life. I’m not out to solve everything, but I’m sure that some of you are facing hardship or maybe you feel like the world is against you? I assure you, I feel that way all the time, just not now.</div>
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In all honesty, I don’t know how I “do it”. When I go about my business each day, I just go about things in an ordinary way. For example, I can happily ride the MTR, I can direct a taxi driver, everything. In fact what some people don’t realise is that I’m really just like the rest of you guys, I just happen to look different. Because of the constant desire to fit in, I tend to just ignore people who think they have a herbal remedy to heal me. This is a hard topic because it’s a daily reminder that I cannot have the same skin as anyone else. I possess the appearance of a burns victim and I reckon that is why people feel the need to tell me about chinese medicine. It’s hard accepting it, but I simply politely decline any offers because only I know that I will never look like you.</div>
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I try to move on in life by having a dry sense of humour. I also have the ability to be the little person with a personality of a lion. People who know me know that because I’ve never really been wrapped in cotton wool, I am a blunt person, I say things like I think they are. I think I’m just blunt because of the way people have tried to shield me from the truth which really irritates me. To people I meet, I try to command honesty and bluntness. I don’t care if the truth hurts, just tell the truth, it may offend, but you cannot always play mr nice guy. The truth has to come out at some point. It makes my friends and I laugh sometimes because let’s face it, when you see someone with a disfigurement or physical ailment, you might assume they might be a little challenged too? Some are amazed at some of the comments I come out with, few are out of the blue but that’s part of the fun.</div>
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I suppose you’ve heard of Nick Vujicic? The man behind Life without Limbs? I don’t know about you, but that guy inspires me enormously. Now I simply do not have the ability to sit and read a book. I’m not sure why, maybe I get distracted easily or I have to be seriously stimulated but instead of reading his book, Life without Limits, I’ve downloaded lots of his interviews onto my iPod to watch on the go and to me, that’s amazing because I’ve also met him in person.</div>
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