Petits ‘fours’

I’m joining in a blog post idea suggested by my blogging friends Clare and Nettie. It’s a series of questions with answers of four. I’d love to hear your petits-fours too!  Just copy and paste the questions into the comments field, I’d like to get to know you better and this is a fun and easy way!  In-four-mation makes the world go round.  Bahaha!

Four names that people call me, other than my real name.

Rachiepoo
Ragey
Fat Foo
Mumma

Four jobs I have had (not counting current jobs)

Cut Price Deli chick
IT help desk
Telephone marketer
(yep.  be kind to those poor souls, they’d rather not be calling you, either)
A blue body-painted extra in a promotional event.

Four movies I have watched more than once

Toy Story
The Piano
Whale Rider
We bought a Zoo

Four books I’d recommend

Tuesdays with Morrie by Mitch Albom
North of Normal by Cea Person
Purple Hibiscus (or any of Chimamanda Ngoze Adichie’s books)
The Good Women of China by Xinran

Four places I’ve lived

Christchurch; enduring memories are icy puddles on winter mornings and frost on my woollen school socks.  I had a pink school uniform, a tree hut in the willow tree. And I met two lasting friends, Rachel.G and Dana.

Papua New Guinea; land of Islands and Mountains, sunshine and breeze. This country is a big part of who I am today. All the memories fill my heart and mind and have shaped my personality.

Melbourne; in a boarding house, far far from home.  It was in a huge city, yet my world there was very small.

Sydney; my first ‘grown up’ home, a little flat with gingham kitchen curtains.  I loved keeping house and making everything just so. But arranging cushions does not a marriage make!  Thankfully, happy endings have been had by all who lived in that little Hornsby nest.

Four places I have been

China (loved the alleyway markets in Tian Jin)
USA (Colorado is my favourite state so far)
Germany (au-pair to a family in Munich)
England (where I met rellies who made me appreciate the marvel of genes)

Four places I would rather be right now

There’s no where I would rather be, but if I HAD to be somewhere else… and there were no limitations hefted on me by reality…

I’d be at Vista Verde in Colorado, having another magical white Christmas.  But only if everyone I love could be there too (yes, that includes you Nettie, and all the Pipsters, my dear friends, my girls from the Dysautonomia community and my lovely readers)!  We’d book out the whole ranch and build gingerbread houses and sing carols with the cowboys and take sleigh rides, or ride horses through the snow and drink mulled wine! There would be hot spas looking out over the snow covered Lodge, steaming mugs of hot chocolate, Cholly’s homebaked cookies, cedar scented cabins, snow tubing and twinkling trees lighting the snow-ploughed path home each night! Ohhhh!  Lucky lucky people that are doing just that right now.

(here’s some photos from when we did it for real)

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I’d be in Darwin: so I could see the precious bump that is going to be my little nephew next year, and hug his much-missed parents this Christmas; see their new house and get a fix for what their world looks like.  I’ve only seen it in my imagination and I want to know what it feels like in that part of the world.

I’d be in Sydney: so I could wish my bro and his beautiful wife and kids a Merry Christmas in person, which would involve my arms around all of them, lots of loud and enthusiastic singing and lots of floating in the pool, ‘cause Sydney, like Darwin, is too HOT!

I’d be in Gisborne: so I could marvel anew at how giant my nephews are becoming, meet the new puppy, chat and reminisce about my Mum with my sister. Dose up on those sisterly cups of tea, and wish them all a beautiful Christmas too.

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Four things I don’t eat

offal
strange parts of animals
kimchi
pork buns (after an experience once on a ship that I cannot shake from my amygdyla)

Four of my favourite foods

(I had to put these into categories, because I couldn’t stop at four!)

Pavlova, Chocolate, Cake, Cinnamon Rolls
Fresh garden veggies; asparagus, snow peas, capsicum, grilled artichokes
Venison, lamb, crayfish and salmon
Fresh still-warm white bread (I know.  Evil.  Yet delicious!)

Four TV shows that I watch

Game of Thrones
Downton Abbey
Graham Norton
Anything on the Living Channel

Four things I am looking forward to this year (and into 2015)

Finally trialling treatment and hopefully having favourable results
Hearing back about a study opportunity… and hopefully, DOING it!
Spending heavenly horse time with my daughter’s new pony (shhh!  still a secret from her!)
Writing more…

 

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Four things I am always saying

“WHO was the last person in the toilet?!”
“Try again, using calm words…”
“…it’s a dysfunction of the autonomic nervous system, the part of our bodies that controls all the automatic functions”
“FFS” (it’s swearing, so I won’t translate)

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Come on!  Tell me your fours…

(copy and paste this into your comment)
Four namesFour jobs
Four movies
Four books
Four places lived
Four places been
Four places I’d rather be
Four foods I don’t eat
Four foods I love
Four TV shows
Four things I’m looking forward to this year
Four things I say

She’ll Make Her Way

 

One of my favourite music artists is Natalie Merchant.  I love her lyrics, her voice.  She writes songs that seem to come straight from the heart …of me.  My brother, Brett introduced me to her when he was clearing out his collection of CD singles one day, way back in the nineties(!)  That day, he gave me a few CDs that today are still my favourites.  “You’d like this” he said, handing her over.  And I have loved her ever since.  Thanks bro.

Natalie sings:  she’ll make her way.  And that is what I am endeavouring to do.
I am over waiting for a certain doctor to care about my case enough to be proactive.  I am taking action myself.  Tomorrow I’m off to see a private specialist in the hope that I can raise a few questions with him and in particular, in the hope that I can get a referral to a particular Neurologist in Australia. He is on the eastern seaboard, treats other patients with Dysautonomia and is less likely to say “Nobody here knows anything about it” and consider those words to be a full stop to my concerns.

I am cautiously optimistic.  I don’t know if tomorrow’s specialist will say “That’s not how we do things” or “I can’t refer you to overseas doctors”… both of which have been told to me before.  I hope, because I can’t help it.  Yet I am cautious because my experiences have taught me that some doctors egos (or arrogance/ignorance) are bigger than my needs.  I keep saying to myself: Brace yourself, Rach.  Don’t get your hopes up too high

Until now, all my medical appointments have been within the public system.  It has crossed my mind that maybe, being a private patient this time, therefore, a ‘customer’ I might get better ‘service’.    But in a nation not known for it’s customer relations; I’m wrapping myself up in some wait-and-see mentality. It will be interesting, I’ll let you know how it goes.

Part of my preparation tomorrow is to get my medical files into better order.  The picture below is how my documents are filed at the moment.  I’ve already filed each bit of paperwork under it’s category, now I need to date order the papers in each section.  The new doc already has a brief medical history and a powerpoint presentation from the Grand Round that was done on my case.  I hope he has managed to look at them.  The rest of the info I will comb through today and pull out anything else that might be useful.   Who knew being sick meant being good at admin?!

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My cautious optimism is being meted out quite a bit lately! Blogging is such a powerful tool.  Since I started my blog six weeks ago, I’ve had more than 30,000 page views.

Screen Shot 2014-07-02 at 6.45.13 pmI did hope when I began my blog, that maybe someone with some medical knowledge would read it and have an idea occur to them.  And last week, a beautiful and hopeful email landed in my inbox.  A doctor in Christchurch emailed me, wondering if perhaps a certain aetiology had been overlooked that might explain some things about my muscle weakness, occasional gait issues, achiness and episodes of paralysis.  I am busy researching and exploring the possibility of her ideas holding some answers for me.  See why there is so much optimism around the place? 🙂

I love the song “Wonder” because the story is about a girl, like me, who is different.  Of course, not exactly like me; there are no doctors coming from distant cities just to see me… I wish! Guess that is why I am planning to take me to them! This song resonated strongly for me. Have a look at these lyrics:

Doctors that come 
from
distant cities

Just to see me
Stand over my bed
Disbelieving
what they’re seeing

They say I must be
one of the wonders

Of god’s own creation
And as far as they see
they can offer
me

No explanation

Oh, oh, I believe
Fate smiled and Destiny
laughed 
as she came to my cradle

“Know this child will be able…”
laughed, as my body she lifted
“…know this child will be gifted,
With love,
with patience, and with
faith

She’ll make her way…”

I like to think I’m like that girl. Making my way, with love, with patience and with faith.  Some days there is more of any one of those than the others, patience is a bit sparse in my arsenal. Overall though,  I’d say I’m making it.

Sometimes I do wonder.  Why?
Other days, I think I might just be

one of the wonders
of god’s own creation!