Boadicea in comfy pjs and slippers.

I wrote this a while ago but it still holds true for me. 

Whilst in recovery mode I thought I'd put it on a photo of my pasty feet and one of my pairs sparkly Dorothy slippers. 

My mantra for living with Chronic Illness.

It's coming up to the end of my year long fundraising for Dysautonomia research. Three weeks to go (Dec 9th is the end). So time is running out to donate. Make sure you head over and donate or share with others who may be interested. Huge thank you to all those who have already given. The video below is me explaining a little about my life with Dysautonomia and why we need more money for research. 



Remember to head on over here to donate to my Clicking My Heels For Dysautonomia, raising money for the Greg Page Fund for Orthostatic Intolerance and Dysautonomia research, at The Baker IDI. Thanks to the generosity of many we've already raised over $3,800, keep donating and hopefully we can reach $10,000.

Enjoying the moments when they come: Ella Hooper "The Red Shoes"

(My Dorothy's waiting for me as I went into my last brain and spine MRI.
Photo via Melt Images)

To say the last few months have sucked healthwise may be an understatement. I'm in Over It mode at the moment. I have a stack of referrals to organise and bloods to get done. But instead the paperwork is sitting under a pile of worn-once-but-not-so-pongy-that-they-can't-be-worn-again clothes, a heat pack, and brain-shaped squeezy ball. Get another needle stuck in my vein or binge watch Season 3 of The Walking Dead? It's not a hard decision. Add in that I am on day nine of a headache that has really only differed in intensity from clutching my head and sobbing and sitting on the couch breathing through the pain, and well it's been a funfest of epic proportions. So when friend and fellow patient, Belinda, sent me a tweet mentioning red shoes and Australian musician Ella Hooper I was a tad intrigued.

Regular readers know my love of red shoes. I made my own pair to say "Screw You!" to illness. They are on my header and business card. I indulge my fetish for red shoes at every opportunity, though sadly my quest for red boots continues. And I am wearing my Dorothy's to every medical appointment for a year to raise awareness and funds for Dysautonomia here in Australia. Friend and fellow patient, Kate, even made me a red superhero cape complete with a sparkly Dorothy shoe on the back. I may have a bit of a red shoe problem. But it's a good problem, as problems go. So no intervention required.

I have followed Ella Hooper since the mid 90's when I first sat in my car listening to her and her brother Jesse's band, Killing Heidi, on Triple J Unearthed. Hailing from the small Victorian town, Violet Town, it was easy to relate to Ella, as a fellow Victorian, rock loving, country girl. Killing Heidi's, Reflector took off, and both Weir and Mascara became regular features on Australian radio, and our loungeroom. Weir may have ended up as one of those songs where my boys were known to plead, "Really? Not again, Mum." But hey, as a Mum, you get to tell your kids to suck it up until they reach the age where they finally realise that your music choices are actually quite fabulous. (Many music battles have been fought over the years. The battle over Jeff Buckley's version of Hallelujah was particularly hard fought. Whether I crushed their child brains into submission by repeated exposure, or they simply became old enough to realise the magnificence of the song, I don't know. But I do feel it is a sign of parenting done right.) Having watched Ella more recently on Spicks and Specks, and various Rockwiz episodes (love this duet with Dan Sultan), I also suspect she'd be a great chick with which to have a glass of something fermented, or a coffee. And that my friends, is an important factor in music selection.

But I digress. 

Ella put out a call to her fans to send in pictures of their red shoes to be added to the lyric video for her new single aptly titled, *The Red Shoes. Being a top chick and fellow lover of the red shoe, Belinda kindly pointed this out, and I of course sent in a picture of my Dorothy's. And lo and behold, there they are in Ella's video!

The song is cracking and if I could dance without falling over and face-planting amongst my rapidly reproducing dust bunnies, I would. Red shoes aside, she had me at the first burst of guitars and I was sold after the first couple of lines.

I woke up with courage

What else is there to do?

My love don't worry.

I'll put on my red shoes

Perfection on so many levels.

After much in the way of shitty health and general ennui of late, it's one of those little moments in life that make you sit up and smile. It's kismet, baby.

Mr Grumpy had agreed that we could drive to Melbourne to see her perform for the single launch but unfortunately the venue is down a set of stairs in a basement. And as much as I am keen for adventure, zooming down a set of stairs in a wheelchair, whilst fodder for Funniest Home Videos, may not be the best option. After much lamenting of my bodgy weak legs and declaring a pox on both their houses, Mr Grumpy has mentioned that he'd be happy to piggy back me down the stairs so I can go. So there may be hope yet. Will keep you updated.

But in the meantime enjoy the explosion of red shoe magic and cracking tune. Turn it up, dance, and remember to embrace those moments when they come.

Michelle :)

*The Red Shoes is the third single from Ella's upcoming debut solo album Tongues.

Ooo look mine and my red shoe sista, Belinda's shoes. 

And a subliminal flash of Dysautonomia.Woo Hoo!

It really is the little things.

Remember to head on over here to donate to my Clicking My Heels For Dysautonomia, raising money for the Greg Page Fund for Orthostatic Intolerance and Dysautonomia research, at The Baker IDI. Thanks to the generosity of many we've already raised over $2,000, keep donating and hopefully we can reach $10,000.

How many red shoes is too many red shoes? (AKA I may need a red shoe intervention.)

Hello my lovelies.

Longterm readers of the blog will know of my love of the colour red (my old loungeroom, my kitchen appliances, my dog's bed, my garden chairs, pots for plants, cushions, the list goes on, Mr Grumpy even feeds my addiction recently buying me a huge red umbrella for the back yard. Even the camera that took the photos for this post is red and has a red case.). They will also know of my love of glittery, impractical red heels. They may not know of the number of red shoes I now possess.

Having moved recently I have been forced to confront my addiction. Or, as I like to think of it, my beautiful red distraction from illness. I have still to find some pairs.

There is nothing more cheery in life than a pair of red shoes. From my Dorothy heels, to my slippers and even my gardening shoes and gumboots, my feet are frequently enclosed in red goodness.

Many I have had for well over 10 years. Purchased with glee back when I was still able to work. And from as far afield as Singapore, on my last overseas trip prior to that pesky illness thing. Yet others have been an impulse buy on a bad day when only a pair of red, polka dot, bow-topped flats could make the world a better place.

I still look longingly at red shoes. Online, or face pressed hard against the window of shoe stores who's pretty, happy offerings are beyond my meagre finances. Oh sweet red leather, faux leather, fabric, sequinned, glittered beauties. How I wish I could take you home.

 Backward or forward, they are a perfect line of loveliness.

Who needs a basket of puppies when you can have a basket of red shoes? 

This is my basket of happiness.

Maybe just one more pair. I can stop any time I want. Really I can. There's that pair of red faux-suede knee high boots that would be perfect for Winter. Or, that pair of patent, red Doc Martins I spotted the other day. Or, the pair of red glittery runners. Or......

Am I alone in my red shoe fetish? Can anyone top my addiction? Or tell me that I really need those knee high boots for my mental health.

Michelle :)

Don't forget to head on over and donate to my Clicking my heels for Dysautonomia, fundraising for Dysautonomia Research at The Baker IDI here in Melbourne. (Information about the ongoing droxidopa aka L-DOPS, trial including how to volunteer, can be found here.)

Click here to donate.

Put on your red shoes and dance the blues!

Clicking my heels for Dysautonomia: Raising funds for The Greg Page Fund for Orthostatic Intolerance and The Baker IDI

During this year's Dysautonomia Awareness Month I spoke about The Greg Page Fund for Orthostatic Intolerance, Greg Page aka the original Yellow Wiggle, being perhaps our most famous fellow patient. Greg's fund raises money for research into a variety of Dysautonomias and drug treatments that is being conducted at The Baker IDI here in Melbourne, Australia.

I have pulled back from social media a fair bit over the last couple of weeks and will for the next month or two to preserve my very limited spoons. But I have decided I need a bit of a positive focus at the moment and have decided to get on board and raise some funds for the Greg Page Fund.

It took a while to work out what to do. Run a marathon? Ah no. I can't even walk to my mail box most days. Trekking? Ah not unless there's a sherpa willing to drag my sorry lump of flesh around. Dance-a-thon? Well, I do a mean set of jazz hands and I have been known to bust a move to Vogue whilst stuck in bed, but I don't know if that would count. So what to do, what to do?

Well late one night (go, 3am insomnia!) I had an epiphany. I would combine the joy of Dorothy shoes with my medical appointments!

I did a trial run when I went for my SFEMG and was pleased when the somewhat bemused neurologists let my eldest come in and take photos of me and my shoes, whilst they stuck a needle in the side of my mouth. I had multiple comments from strangers and much curiosity in the waiting room. It seems that a woman in a wheelchair dressed to the nines and wearing bright red, sky-high, glittery red heels peaks people's interest, and tends to bring a smile to the face.

So my plan was born.

For the next 12 months I will wear my Dorothy heels to every medical appointment, be it a specialist appointment, GP visit, investigation, ER visit, blood test or physio appointment. I will document the process in photos here on the blog, FB and the fundraising site. In a way it is also document a year in the life of Dysautonomia. I plan to hand our information about the fundraising and about Dysautonomia for those who question about the shoes.

All funds go to the Greg Page Fund for Orthostatic Intolerance at The Baker IDI, to directly fund research into the mechanisms and treatments of Dysautonomia, be it POTS, OI, NCS etc, at the Human Neurotransmitter Laboratory run by Professor Murray Esler.

                         

(Professor Murray Esler, head of the lab)

So click on the link below to find out more:

Clicking my heels for Dysautonomia.

So come and support me and follow along. Donate a dollar or two if you can, or share with others who may want to support me for the year, to bring glittery fabulousness to the world of Dysautonomia and support the great work done by The Baker IDI. Lets find a cure!

*With special thanks to Dejana, the Donor Relations/Community Fundraising Coordinator at the Baker IDI Heart and Diabetes Institute for helping this fundraising virgin in setting all this up.

Cheers Michelle :)