Wednesday 29 June 2011

The View From My Couch: Pampering

I decided to spoil myself recently and buy some lovely Sohum body cream and soaps.  It's the little luxuries that get you through the day.  It was one of 'those' days, so I sent my offspring into the store with instructions, whilst I sat with my head in my lap in the car.  The came back to the car with a big bag and a grin that would impress the Cheshire Cat.  I opened up the bag to find a present, complete with gold ribbon.  They had decided to tell the store assistant it was a present for their mum so she wrapped it up.  They wanted me to have a special gift to unwrap.  I didn't tear up, really I didn't.  It was a bad hayfever day, okay.

Michelle :)

Friday 24 June 2011

Dysautonomia Australia: Get Excited People.

Exciting news here in Australia for all Dysautonomia patients.  There will soon be a website dedicated to raising awareness and providing local information on Dysautonomia.  Content will include information on everything from the latest research, to finding local doctors, and navigating our disability system.  The website will also provide content for our cousins across the pond in New Zealand.

I am proud to be part of a group of amazing women who are working together to build this website.

The website is currently under construction, but we are hoping to have a basic site up and running within the next month.  With the site continuing to develop over the next few months.

Stay tuned for more updates here on the blog, FB and Twitter.

In the meantime you can access our FB support group, POTS & Dysautonomia Australia (and surrounds) here.  Or read about our last get together here.

Time to raise the roof, or at least some awareness, locally.

Michelle :)

Tuesday 21 June 2011

When all else fails bake: Sourdough Yeast Beast.

During my unplanned sabbatical I unleashed my creative side in many weird and wonderful ways.  There's something about creating that is soothing to the soul.  It doesn't matter what it is, but to be able to sit back and say "I made that" is better than sunshine on a rainy day.

Perhaps my most enjoyable endeavour during this period, was growing my own wild yeast and making my first loaf of fresh sourdough bread from scratch.  I know, I know.  I am walking on the wild side.

Surprisingly, I found that I wasn't alone in my slightly strange obsession with homemade bread.  The requests have flowed for recipes.  So by popular demand, I give you:

The Yeast Beast:

The basis of the Yeast Beast comes from a recipe featured on River Cottage Everyday, but has also been influenced by a recipe for a no-knead sourdough that I found on the delightful Miss Buckle's blog.  

Living the fun life of fructose malabsorption (FM) I have been experimenting with different flours (Spelt, Kamut, Oat and Rye) as normal wheat is like Draino to my innards.  Now before anyone jumps up and points out that Spelt and Kamut are in the wheat family, I know.  However, they are supposedly easier to digest that common commercial wheat flours, and some with FM can tolerate a few slices of spelt and kamut bread (kamut is sadly nolonger my friend, but a sourdough spelt is awesome).  Plus sourdough is also supposed to be more easily digested as it breaks down the fructans.  So whilst I and my youngest may be able to tolerate these, there are no guarantees that others with FM can do the same.  It's all trial and error.

As you probably know by now, thanks to my Dorothy Shoes post, I feel that a glass of wine really is essential to the creative process.  So buy a bottle of your favourite beverage so you can celebrate every step along the way.  Growing your own wild yeast from scratch is really about creating new life.  And just like children, your yeast will need to be fed on a regular basis and goes bad if ignored.  But unlike the moody teenagers you offer to strangers on a regular basis (or is that just me?) your yeast doesn't talk back or leave rancid sandwiches to liquefy under their bed.  So there are multiple reasons to celebrate with a glass of bubbly or two.

Now I am sure there are essential baking rules that I am breaking when I make my sourdough, but I am impatient and slow witted at times.  Yet despite my stupidity and poor attitude I have managed to make some damn fine bread.  Even the one that barely rose and which I subsequently decided was therefore a surprise foccocia was fantastic toasted with some chutney and chedder cheese melted on top.  So I say, "To hell with the rules!  Livin' on the edge baby" and just see what happens.  So far, so good.  

My Yeast Beast (aka sourdough starter) was of the spelt variety.  Now I did read that you should therefore only make spelt loaves with it, but I didn't read that until after I'd used a mix of flours and it still worked well.  Rules were meant to be broken people.

I should point out that the growing of the Yeast Beast is a long process.  Given that I am at home all day and have no life, that wasn't a worry for me.  For those with lives you may wish to stick with other quicker methods or go to the local bakery.  I will say that I have found it a rewarding process though.  And one of the best breads I have ever tasted.

Stage 1.  The Starter. (7-10 days)

I know 7-10 days seems ridiculously long, but trust me it's worth it.  Plus, that's 7-10 reasons to have a glass of wine!  Every new yeasty bubble should be celebrated.

Now I will admit to some trepidation when I first started, as evidenced by my FB status updates:

"Day 1: Attempting my first sourdough starter. Hoping for yeasty goodness and not a mutant hell beast bent on world domination, but really it could go either way. This time in 7 days hopefully I will hopefully be supping on homemade bread and not loading my shot gun to take down the shrieking hell spawn in my kitchen. Wish me luck.
Day 3: The Yeast Beast is looking good. Though if a lifetime spent watching Sci Fi has taught me anything, you should never get cocky as that always leads to disaster and a world taken over by zombie dogs".

But it all went well and the world wasn't taken over by my mutant Yeast Beast, yet.

Thumb sized piece of fresh rhubarb.
4tbsp Wholemeal organic spelt flour
Warm water.

Clean glass jar

Day 1.  
  • Pour a glass of wine.
  • Put on some groovy tunes.  I've been in a Sarah Blasko phase of late, so that's been my choice.
  • Go out to garden and grab a piece of rhubarb.  Realise it's a nice day and sit outside for a while and relax.  Eventually, recall that you were in the middle of creating the Yeast Beast.  Go back inside and top up glass of wine which appears to have been affected by the mystery of evaporation.
  • Find a clean glass jar and fill with boiling water to sterilize.  Pour out water and let cool.
  • In a bowl whisk the flour with enough water to make a batter similar to thickened cream.
  • Pour into prepared jar.
  • Drop in rhubarb and cover with plastic wrap.
  • Put it somewhere warm. My Yeast Beast was grown in my bedroom as it was the warmest room in the house.
  • Grab another glass of wine and do a little dance to celebrate your magnificent efforts.
They do say you can get bubbles within the first 24hrs, but with Winter here, it took a couple of days.
Warning: initially it can smell really foul, and resemble something that my dog threw up.  But by day 4 I started to have the first hints of a yeasty smell.  After which it went from strength to strength.  

Day 2.
  • This is where the feeding begins.  
  • Whisk in another 100gms of flour, with enough water to keep the right consistency.
  • It will smell bad.  I recommend a glass of wine to recover.
Days 3-10. 
  • Every 24hrs scoop out 1/2 the starter.  You can toss it, but I just put it into the compost.
  • Add 100gms of fresh flour, with enough water to keep the right consistency.
  • Repeat this each day.
  • You will know it is ready for use when it has that sweet, yummy yeasty smell.  
  • Throw out the rhubarb and you are ready for some baking.
I should mention that although the River Cottage recipe says to feed it each day, I, with my brain fog, forgot a day here or there and it was still fine.  You can 'refresh' your yeast this way forever.  Some Yeast Beasts are known to be nearly 100 years old.

Stage 2: The Sponge.

Yes I know, another stage.  But it's worth it.  Trust me.  Would I lie to you?  Leave overnight to ferment.

2/3rd cup of your Yeast Beast.
300gm spelt flour
250ml warm water
  • Mix all ingredients in a glass bowl with your fingers.
  • It's very gooey, but kinda cool.
  • Cover with plastic wrap and leave overnight. I make mine about 9pm and leave it till about 10am the next day.
  • It's late so a nice tawny port may be more apt than wine to celebrate, but whatever suits.  A warm glass of milk is equally good in the evening.
  • The next morning it will be bubbly, thick and sticky.

Stage 3: The Dough.

Almost there.

300gm spelt, or a mix of other flours to make the 300gm.  Go crazy.  I don't measure and just put in a bit of each till I get the right amount.
10gm sea salt.
I have added a handful of pepitats and mixed GF grains at this point.  No real measurements, just what felt right.  Apparently you should soak them beforehand.  Again I found this out after the fact, but my bread was still good.
  • Mix it with your hands again.
  • The dough should be fairly wet but you may need to adjust your flour or add extra water as certain flours absorb more water than others.
  • Now this is the point where my planning fell down.  Kneading.  Bugger.  When your upper body strength is measured in wet tissues and yours wrists crack and roll, kneading becomes somewhat challenging.  I swear I heard the dough snort laugh at my efforts.
  • You can use a dough hook on a mixer, but I persevered much to my bodies protestations.  This is a really good point for another glass of recovery/pain management wine.
  • Knead for about 10 mins until the dough is silky smooth.
  • Put dough in an oiled bowl and cover with plastic wrap again.
  • Leave the dough to double in size.  Can take a long time.  With Winter temperatures I ended up leaving it till late afternoon (about 6-7hrs, Update: I've now increased my time to roughly 24hrs as this gives a better flavour and also breaks down more of those pesky fructans).
  • Knock back the dough by punching (very therapeutic) ready for proving.
  • I put a flour covered tea towel in a large bowl on which I put the dough to prove.  I have also sprinkled the tea towel with oats and pepitas.
  • Leave to double in size again.

Stage 4: Baking.

I have used a few methods at this stage but the one from Miss Buckle has given me the best results.  I use a cast iron camp/dutch oven in my normal oven.  
  • Heat the camp oven in the normal oven at 200C (Miss Buckle says 250C but I found I didn't need to go so high).  
  • I put a piece of baking paper in the bottom and scattered more seed over that.
  • Put dough in camp oven and top with more seeds.
  • Put lid on and bake for half hour.
  • Take lid off and bake for another 15mins.
  • When golden and the bread sounds hollow when tapped, it is ready.
  • Take out and let cool on a wooden board for at least 20mins before carving.
  • A glass of wine and the busting of some moves, are definitely required to celebrate your creation.
(1) spelt and oat soudough, (2) kamut, spelt and oat sourdough

Then pig out on your baking masterpiece until a sourdough coma ensues.

I found the whole process to be really rewarding.  Growing my yeast from scratch using the wild yeast spores in the environment.  Knowing what is in the bread.  Seeing that final product.  Really I am easily pleased.

Happy Baking

Michelle :)

The Sourdough Companion is also a good source of information and ideas.

Sunday 19 June 2011

Uberneuro: The good, the bad, and the new party trick.

After much trepidation, nausea, and frequent pee stops, I managed to get to, and survive, my visit to the uberneuro.  I don't mind admitting I was a wee bit worried in the hours, okay days, preceding my appointment.  Would he think I was a nutter?  Would he think there was nothing wrong?  Would he find something terribly, terribly wrong?  Would he be the wearer of a colourful bow tie (the international symbol for "I'm a God complex arsehole.  All shall bow to my awesomeness")?  These are the things that go through your mind before the big appointments.

It's ridiculous that after all this time I still worry that I might end up with the nutter tag.  I know I have a genuine medical condition.  I've had it verified by a number of specialists.  I have the hard data in the reports.  Yet still that little voice in the back of my mind says, "it's all in your head, loser".  Logic and fact be damned. It's the same little voice that took up residence after my horrendous and soul destruction visit to my local condescending and incompetent General Physician when I first became sick.  Every time I think I have finally succeeded in getting rid of that voice, it raises its ugly little head once more.  The King Cockroach of the little voices in my mind.

That's one of the joys of having an invisible and unknown illness.  What others can't see they doubt.  Then if you're especially lucky, they are kind enough to share their doubt with you.  One doubt filled comment.  One judgmental look, and all your confidence crumbles.  Maybe they are right?  Maybe it is just all in my head?  I'm not quite sure what I'm supposed to look like to prove I'm ill, but I still feel like I should somehow attempt to look the part.  I like to pride myself on having a pretty good attitude about this whole illness business, but times like this it all comes flooding back and all those insecurities take over.

Two and half hours after I walked into the office in the dingy old section of the hospital, I finally had answers.  All the months of waiting actually paid off.  That doesn't happen very often.  So many times I have waited and waited only to have my piss poor health confirmed, be told I was unique, that they have no idea why, and that there were no treatments to offer me.  Time well spent, not.  Always followed by a bill that required the offering of my first born, or left kidney to pay.

It was the longest and most thorough neurological appointment I have ever had.  I was poked and prodded, and even bared my naked bum to his face (thankfully no inappropriate flatulence, though for some reason I felt a sudden desperate need to vacate my gasses as soon as I dropped my undies).

I was taken aback by the fact he actually asked my opinion and made jokes.  Who was this man with the bedside manner?  Surely he cannot be a member of the neurological profession?  The words 'professor' and 'neurology' are never found in the same sentence as 'personality' and 'humour'.  Well, unless the words 'lack of' are involved.  He was a rare breed indeed.

Mr Grumpy found great humour in my body's incompetence, chuckling away to himself through out.  Is it one point or two? Is it hot or is it cold?  Can you feel this pin I am sticking in your stomach?  The physical equivalent of a Mensa test.  Unfortunately, Mensa will not be calling anytime soon.  I fear my body is not even fit to carry their pocket protectors.  In fact, I'm pretty sure that the nerds would give me a swirly, and laugh derisively at my inability to identify prime numbers.  I did find out that my right-side is far more intelligent than my left, which may have an exciting career ahead as a speed hump.

So what does it all mean?  My neuropathy is spreading, and spreading faster than I thought.  I think back to early 2006 and I was relatively well.  Then my ANS went into melt down.  A few years ago the toes on my right foot started burning.  Then it was temperature sensation, pin prick, reflexes, burning my hands, the list goes on and on.  (I've written about my various progressing ANS symptoms so I wont bore you with those here).  Now I am uncoordinated and weak as a new born kitten.  Fun times.  Most surprisingly I now have a large patch of my stomach you can stick a pin in, and I simply don't feel it.

He confirmed that my version of Bob is not related to a virus as first thought, but rather an underlying genetic neuropathy.  This isn't really surprising.  I've never brought into the virus argument, it just never fit with what I was experiencing and always felt like a red herring.  He agreed and said my presentation and progression were not reflective of a viral aetiology.  It was nice to finally get an answer to 'why'.  There's something reassuring about an answer, even if that answer is progressively dying nerves and all that means for the future.  It was equally nice to have things like MSA and a variety of Parkinsonian disorders ruled out.

In the world of possible answers, it's not really the best answer I could have received, that would have been Bob is due to A, if you take B you will be cured.  But it's also not the worst.  It's an answer and frankly, that's a relief.  Uncertainty is a far worse diagnosis.  Uncertainty is a shadow being, menacing, and waiting to pounce.  It leaves you floundering, not knowing where to go or what to expect.  A diagnosis, any diagnosis gives you legitimacy.  Legitimacy in the eyes of others, and more importantly, for yourself.  It also gives you something tangible to deal with, and that is priceless.

I will admit to a moment of "why couldn't it be a tumour.  They could cut that out", because that's how your mind works when the news you get isn't all beer and skittles.  A tumour becomes a viable and more preferable option in comparison to diagnoses that involve the words 'progressive' and 'nerve death'.  Sounds crazy when you say it aloud and I know that many would be shocked, but crazy is order of the day over logic in these situations.

I still have more tests ahead to clarify if I am dealing with crap or super crap, not that it will change my treatment options greatly.  It's all still symptom management rather than treatment.  The dead nerves will continue to be dead nerves and more will join the party.  And really, the last thing I need is some form of reanimated zombie nerve roaming around my body.  I've watched enough bad scifi to know that kind of thing never works out well.

At any rate there is no one to do the biopsies I need done until next year, so my plan is just to sit back and not worry about the possibilities until they crop up.  I figure, it is what it is, and I can't do anything about it so I'm not going to waste my time worrying about 'what ifs?'.

Besides, I now have a new party trick, the human pin cushion.  Maybe I could try out for The Dudesons as the new human dart board, or join one of those freak shows lying on a bed of needles.  Oh the possibilities.
(Though I'm not sure the outfit goes with my new found sense of style)

Michelle :)

Time to sing my favourite song and break out that old bottle of butterscotch schnapps.

Saturday 11 June 2011

Unplanned Sabbaticals

Well hello there dear readers.  Long time no see.  How have you all been?  Hopefully your days have been filled with exciting adventures involving penguins and pirates, and a swarthy guy named Big Al.  Or at the very least, good coffee and large amounts of cake.  Or maybe I am still sans brain and typing complete nonsense, who knows?  Not me obviously.

It seems I took a wee bit of a blogging vacation the last few weeks.  Like all the best adventures, it wasn't planned, it just sort of happened.  One day I was blogging away with wild abandon, and the next thing I knew my poor little keyboard was sporting a layer of dust and dog hair.  So sorry dear keyboard.  Stop with the puppy dog eyes I feel bad enough already for neglecting you and my lovely, stunningly attractive, and highly intelligent readers.

Bad blogger.  Bad.

I shall now punish myself by watching Justin Bieber's ProActive ad on loop for an hour.  Not sure if I'll make it through the whole hour, and there is a huge chance I will develop a fugue after such a traumatic event, but it's what I am willing to do to atone.

So what exciting adventures have I been up to during my unintentional vacation?   Well lets see.

I've attempted craft and ended up trying to wash the foul taste of spray paint out of my mouth.   Tip for the day: don't sit downwind when using spray paint.

I've attempted baking and fallen into a blissful sourdough coma.  Who knew so much pleasure could be derived from growing your own Yeast Beast?  I've spent hours marveling at my bubbling fermenting brew.

(I am the bread queen)

I've weeded a one metre patch of path only to discover that my youngest dog, Freyja, has decided that this is the ideal pee spot for the past few months.  I have since spent my time searing my nose hairs to try and clear the smell of old dog pee from my nostrils

I've attempted a painting only to cover my wall, window, and unsuspecting dog with paint from a flying paint brush courtesy of a madly twitching hand.  I have discovered that my creative process involves swearing and insulting the paints mother.  I'm sure that's how all the Great Masters worked.

I have been singing Olivia Newton-John tunes at physio and been lapped by my grey haired nemesis once more.  Watch out old man.  Pass me once more with that pitying smile on your face and you may find my walking stick imbeded in your silver-haired butt hole.

I have braved the feeding frenzy over the carcass of the local Borders bookstore.  Swearing and trying not pass out when all the tills stopped working at once in the stifling hot store.  Thankfully, I had a sub in the form of an angsty teenager who took over line duties and was then scared for life by discovering his mother was buying Anais Nin's Delta of Venus and Vladamir Nobokov's Lolita.

I have frolicked/stumbled in the snow in t-shirt and thongs much to the amusement of other locals and their 15 layers of clothing.
(Was a wee bit cold apparently)

Most of all, I have tried to ignore my petulant body and tantruming Bob, and follow the Little Engine That Could's philosophy of "I think I can.  I think I can".  Whilst my success may have been measured in nano-bites, it was nice to live in a land of unicorns, kittens and lollipops for a while.

As you can see I've been living on the wild side these past few weeks.  Watch out Bear Grylls, I'm coming for your job.  It'll be Rusty vs Wild, minus the pee drinking.

Normal posting shall resume shortly.

Michelle ;)