Being a Pixie

I am a Pixie.
I have Psuedo Xanthoma Elasticum or PXE for short (www.pxe.org). We are known as Pixies. I like it. And, I like being a Pixie.
PXE is a very rare genetic condition that effects all of the elastin tissue in the body. Because it is so rare, it, for the most part, is still not fully understood but it appears that there are different severities. It also seems that not all pixies will develop all of the characteristics.
I, for example, do not experience Gastro Intestinal bleeds, nor have I (knock on wood) had an eye bleed yet  (although this could also be attributed to my early diagnosis.)

I was flookishly diagnosed at age 2, by a random doctor at the RBCH when mum had me there for a fever. I had a "flare-up" on my neck that we had been told was excema but just wouldn't go away. The doctor noticed it and referred mum onto a dermatologist, Dr Casey, my first specialist (of close to 60 now) who confirmed that I was indeed a Pixie. At that stage, I was only 1 of 10 known pixies in Australia!!
I was special, just not in the way mum and dad had hoped.

Over the years and the hundreds of doctors appointments later, along with alot of wrong information, my PXE developed, and as it did, it also developed me.
We were told I wouldn't live past 15. That I would be blind by 20. I would be in a wheelchair by 25. A am 34.5 now, and whilst I do have vascular claudication in my legs, peau de orange and 3 angoid streaks in my eyes, and the typical pixie "chicken skin", I live a perfectly normal life. I don't blame the doctors for telling us this mis-information, there simply was not enough research to know any better.

For me, the hardest part of being a pixie was watching my mum battle with guilt at every doctors appointment. It got to the point, when from about the age of 12, I refused to let her come in with me. I would go in, speak to the doctor, then filter the information to her. It wasn't her fault and I felt so guilty that my disease, that my existence made her feel so bad. I really wouldn't wish that guilty feeling on any parent, or any child for that matter.

To be 100% honest, I am proud to be a Pixie.
Unless you are told from a very early age that you will not live, I don't really think you can fully understand how happy I am when I wake up every morning.
How happy I am that I can see my family and friend's smiles.
How happy I am that I can walk.
How happy I am to be me.

PXE really has shaped who I am in every aspect, even though I now know that my life expectancy is the same as everyone else's - ie, not-guaranteed. I do not put anything off to tomorrow that can be done today. I guess this is why I travel so much. I may very well go blind tomorrow, well I'm going to damn well see as much of the world as I can before that!
I guess that's also why I have never really been very career- driven. I was lucky enough to be a pretty smart child, but not knowing how much longer I have on this planet, makes me value each and every day. I refuse to be locked away in an office for 51 weeks a year. No thank you.
But so many people are and this baffles me?
Yes, I know my heart may stop tomorrow, but nobody has a guarantee their's won't either? I might be hit by a bus and die a completely non-PXE death!? Who knows!?!?
I guess I am just more aware of my own mortality and that has made me who I am. I am more in control of my life and how I want to live it.

Granted, there are alot of Pixies in far worse condition than me. People who weren't lucky enough to be diagnosed early enough to take preventative action so they didn't end up suffering from GI bleeds, or they didn't get a bump to the head that sent them blind.
I am very blessed.

But, if there was a magical drug available tomorrow to cure my PXE, I would not take it. I feel I would be robbing myself of myself, if you know what I mean. Yes, I guess my life is slightly different to other's but on a subconscious level. But it is still my life.


The real question is - to reproduce or not.
I am a firm believer in "natural selection." I believe that humans have evolved because only the strongest survived.
Do I think of myself as strong, well not necessarily.
In this day of ante-natal testing and IVF testing, I have many times wondered, if these technologies were around when my mum and dad conceived me, if I would be here now.
Would the doctors have recommended an abortion to my mother because their daughter was going to be born with a faulty ABCC66 gene, and they had no idea what that meant. She might end up blind and with a whole barrage or problems, but then again, she might not? What would my parents have chosen to do?
I am sooooo thankful they never had to make that decision.

Yes, I AM faulty, by "normal" standards. But what is normal?
I feel I have contributed to society, but is that enough to make me normal? One look at my medical history is enough to make most doctors cringe. In actual fact, most doctors have never heard of PXE.

My Cardiovascular specialist told me that I was eligible for "genetic testing" and that he recommended Mr Man and I undergo this before we considered starting a family so we knew what the possibilities of having a pixie child were.
PXE research shows that there really isn't that much of a risk of passing it on. Even though I am a recipient of the gene, it doesn't necessarily mean I am a carrier of it as it is a recessive condition.
Still, we thought about it long and hard. Mr man originally wanted to test simply because that's what society told him to do - avoid "faulty" children at all costs.
I didn't want to.
I guess it is me being a chicken, or maybe even selfish, but I really did not want to have to make a decision about an unborn child's life.
I believe I was born for a reason, like every child is. I believe natural selection allowed me to be here, and if nature says I can reproduce, then I will.

That being said, if nature decides that my genes shouldn't be passed on, then so be it. We will adopt a child.
I am a product of natural selection, and I am proud to be a faulty one at that.

So, even though Mr Man and I have been on this TTC journey for 19 months now, we will not be going down the IVF path. Who knows, maybe nature already has made her decision? Maybe I am not meant to pass my genes on? Who knows, but atleast we have had fun trying! Afterall, that's what life is all about - having fun and sharing love.

Love from a Pixie.

Finding an English speaking Chinese medicine doctor in rural Hsinchu

So, after we both thought this was our month, only to have "my friends" turn up yesterday, Mr Man and I finally decided to go and do the rounds of the Chinese medicine doctors in the hope of finding one that spoke English.

After bidding a sad yet happy farewell to Cocoa and Charcoal (they moved to their new fur-ever homes today) we put poppy on her lead and walked all over town.
So far we have found 4 chinese medical clinics here in our small town.
The first clinic spoke no English AT ALL but with my limited Chinese I managed to convey that we were trying to have a baby. The doctor recommended herbs (5000NT = AU$180 for a months supply). Being a little more expensive that we had hoped, and also not being asked any questions at all about my cycle or anything, we decided to keep walking.
Clinic number 2 had a doctor who spoke okay English - certainly enough to get by on. He also recommended herbs and said that he wasnt an acupuncturist so didnt know how helpful it would be. He gave me his card and the card of the acupuncturist at the same clinic and said to come back on a weekday. He said that he would most likely prescribe me a mixture of herbs (all vegetarian) for 7 weeks, which should be enough to completely balance my cycle and help us to conceive although I would have to abstain from alcohol and a couple of other foods for that time. It would cost 500NT a week ($18), much cheaper than the first clinic.
Both the doctor and nurse completely ignored me at the third clinic so I turned around and walked out.
The 4th clinic is one I stumbled upon last week. The nurse spoke excellent english (although she has since changed jobs) and said that the doctor also spoke some English. The doctor was an acupuncturist who did basic herbs. One acupuncture treatment is 100NT ($3.30) with medicare or 300NT ($10) without. I haven't received my medicare card yet so it would be at the higher rate.

So we are thinking to either try the 4th clinic, or the 2nd clinic.... It's a difficult decision... I might go to each clinic for treatment once and see which one I like better.

But, atleast we have actually started on the path!

Our foster fur babies

About a week after we arrived one of my colleagues, Dan, invited us around for drinks one Saturday night.
Dan replaced me when I suddenly quit and went home for Dad, so he has been here just over a year and is quite settled. So settled in fact that he even has a dog with his partner!! His partner saw little Grady on the road and couldn't resist bringing him home.
Dan has also been quite active in MANA (Many Animals Need Assistance) an NGO based in Hsinchu that work with stray and abandoned dogs and cats.
Dan was asked to temporarily foster Patat, a 6 month old Schnauzer mix until they could find her a new foster/adoptive home as she was dumped at a shelter but was too young to be locked inside with the other dogs.
He had had Patat for 2 weeks when we went to his house, and within 20 mins Mr Man was in love. So was Patat. Okay, so was I!!
So we decided to foster her, (Dan already had his hands full with Grady) until we/MANA could find her a fur-ever home.
We renamed her Poppy and fell madly in love with her.
The next Friday Mr Man was late home from work. I wondered why but didnt think too much of it. About an hour after he was due home he arrived, soaking wet and with a huge bulging jacket! Apparently he had noticed 2 puppies on the side of the highway he drives on to get to work for the last couple of days but had hoped they were owned and were just out playing. But, it had become apparent that they werent. He found them huddled together in the bus shelter for warmth and just had to bring them home...
And so there were 3...
We named them Cocoa and Charcoal, gave them baths, watched them devour 4 bowls of dog food, and then piss in the middle of both yoga mats. Simultaneously, one on each mat....
And so the wonderful, sleepless, frustrating, puppy-training days began..
It has been a week today since Mr Man brought them home, and wow, have they grown!
Then are probably grown the size of their heads? They have also really started to develop personalities.
Charcoal is a huge sook. She loves a cuddle and is always the first to climb onto your lap. She also whimpers occasionally during the night or if her or one of the other dogs are put into time out...
Cocoa is very independent.. She is more than happy to play on her own, sleep on her own, eat on her own... Although, she also does like cuddles if she ever gets a chance with Charcoal and Poppy always occupying poll position!
With only a 2 bedroom apartment, 3 puppies, really has pushed the boundaries of space and sanity.
Luckily, we have very understanding bosses who allowed us to put up a sign advertising the pups. We put the sign up yesterday and yesterday Cocoa had already found a new home! She will (probably tomorrow) move to one of Mr Man's colleagues house. Her son (one of Mr Man's students) has promised to take good care of her.
It will be sad to see her go, but it will also be amazing to have 1 dog worth of poo and pee less to clean up every couple of hours!!

Here are some pics!!

All three puppies causing havoc.

Cocoa and Charcoal asleep in their carry bag at the vets.

Poppy

Charcoal

Poppy and Charcoal - not playfighting for a change!

Cocoa

All about me

Welcome to my blog.
Mr Man and I are an Australian couple currently trying to get pregnant whilst working as Teachers in Taiwan, learning Chinese, raising 3 foster puppies and, all the time, trying to survive on the crazy Taiwanese roads!
If truth be told, this is our second attempt at life in Taiwan. We originally moved here in April 2010 after 20 months on the road, during which time we travelled through Indonesia, Malaysia, Singapore, Thailand, Laos, Cambodia, Vietnam, Myanmar, Bangladesh, China, Hong Kong, and Mongolia.
It was during this time of "stability" (after we came to Taiwan) that we decided to officially start our TTC (trying to conceive) journey.
Unfortunately after only 4 months in Taiwan, and after just getting settled, we found out that my father had stage 4 lung cancer, and so within a week, we packed up and moved home.
Less than 4 months later we lost dad. But during this time we were able to spend alot of quality time with him and were able to help him tick off almost all of the items on his bucket list, but, we were unable to make him a granddad.
4 days before he died, I apologised to him and told him we had been trying. He smiled at me and simply said "thank you." He didn't even know we were trying, no one did. We wanted to surprise him and mum. But the universe didn't want it to happen that way.

Fast-forward 5 months and we decided it was time for us to leave the country again. It was time to pack the backpacks again and get back to our own lives.
As much as we love our families and friends, we just can't handle living in Australia. We are wanderers and the rules and restrictions and paranoia of society in Australia drive us crazy.

So we spent the next month in Borneo, and then 4 months diving our way around the Philippines.

And then, with bank balances well and truly depleted from all of the diving, we came back to Taiwan.

Exactly 14 months after we left..
Exactly 14 months of TTC later and we were still babyless..

With fertility specialists and tests soooo stupidly expensive in Australia, we figure, why not d it here? WHY NOT give Chinese medicine a go?

With this blog I hope to share some of the experiences we have trying to create a little person over here, aswell as some of the interesting and funny things we find along the way.