Just a Typical Juno

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

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

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

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

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

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

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

What else have I got lined up?

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

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

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

Xx

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

Hello dear viewers.

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

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

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

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

 

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

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

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

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

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

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

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

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

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

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

 (You're here by the way!)

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

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

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

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

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

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

Mui xxx

Hong Kong...SEVENS!

Hi all! 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Peace out guys!

TheIchthyRef  

That Pass that's so highly sought after!

We do all sorts during March Past!

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

The Cymraeg love

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

 

The Girl Behind The Face...and other things

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

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

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

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

Please click "Like" on this following Facebook link!

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

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

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

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

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

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

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

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

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

Xx

I'm Not a Peanut!

People say I'm nuts, for what I do to myself. I hope there are no nut allergies here on this blog! 

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?!

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. 

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.

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!

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. 

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!

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! 

Xx

The Simple Joys of the Bucket

There is the ALS, how about Ichthyosis?

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. 

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. 

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!

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. 

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. 

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!

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.

Do follow me at:

muixthomas

Xx

Take a Leap of Faith...it Works.

You can't have everything in life

I'm back with a few thoughts and this time, it's rugby and flat hunting as well as Hong Kong mannerisms. Stay tuned. 

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. 

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!  

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.

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.

"What Faith Can Do"

Everybody falls sometimes

Gotta find the strength to rise

From the ashes

And make a new beginning

Anyone can feel the ache

You think it's more than you can take

But you're stronger

Stronger than you know

Don't you give up now

The sun will soon be shining

You gotta face the clouds

To find the silver lining

I've seen dreams that move the mountains

Hope that doesn't ever end

Even when the sky is falling

I've seen miracles just happen

Silent prayers get answered

Broken hearts become brand new

That's what faith can do

It doesn't matter what you've heard

Impossible is not a word

It's just a reason

For someone not to try

Everybody's scared to death

When they decide to take that step

Out on the water

It'll be alright

Life is so much more

Than what your eyes are seeing

You will find your way

If you keep believing

I've seen dreams that move the mountains

Hope that doesn't ever end

Even when the sky is falling

I've seen miracles just happen

Silent prayers get answered

Broken hearts become brand new

That's what faith can do

Overcome the odds

You don't have a chance

(That's what faith can do)

When the world says you can't

It'll tell you that you can

I've seen dreams that move the mountains

Hope that doesn't ever end

Even when the sky is falling

And I've seen miracles just happen

Silent prayers get answered

Broken hearts become brand new

That's what faith can do

That's what faith can do

Even if you fall sometimes

You will have the strength to rise

Okay, it's late and I'm working soon!

Xxx