The IchthyRef Does Q&A Part 2

I'm back! And here is the second part in my Q&A for Ichthyosis!

This time, my volunteers are, Melanie Luther, Courtney Westlake and Carly Findlay!

Hope what you read below is somewhat helpful :)

Melanie Luther

I first met Melanie through Facebook through the Ichthyosis Support Group, literally last year, this time…happy Facebook Anniversary, Melanie!

Melanie asks:

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

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.

Courtney Westlake

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!

Courtney has a blog as well, I think you should check that out too!

http://www.blessedbybrenna.com

Courtney Asks:

You seem really active, what special things do you do for your skin/temperature to participate in activities and sports?

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.

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!

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 J

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!

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!

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”.

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 J

Carly Findlay

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!

Check it out at,

http://carlyfindlay.blogspot.com 

Carly Asks:

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.

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.

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! 

Thanks for reading!

xx 

The IchthyRef does Q&A Part 1

When I started this blog, I had a thought.

 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.

D.e. Fasciano

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:

http://ouryoungwarriorevan.blogspot.com

D.e. asks:

What is your skin routine like?

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 :)

Does your skin hurt when you get sick (fever, cold)?

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. 

 

Does the ocean water bother you? 

Or did it when you first tried swimming in the salt water?

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!

Do you notice a difference in your skin in HK compared to UK visits?

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. 

Lucy Betts

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!

Lucy asks:

Do you find you have other health problems related to your skin?

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. 

Do you find you have a lot of allergies?

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!

Can you go on the beach without it irritating?

I've answered this question already. As long as I'm cut free and there is clean water supply nearby, I'm absolutely fine. 

 Do you find being out in the sun hard?

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. 

Jennifer See

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!)

Her website is

http://confettiskin.com

Jennifer asks:

What's the most bizarre thing anyone has ever said to you about your skin?

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. 

 How do you normally handle rude people? 

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!

How does the culture in Hong Kong affect your ability to network with other affected people in the city?

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. 

That's Part 1 done, I'll work on the next batch soon!

Xxx