About

Living with Bob is about finding the funny when faced with the absurd and disheartening world of chronic illness.  It doesn't take life too seriously, instead choosing to face the crapfest that is my health with a large dose of black humour.  There may be the occasional piece of useful medical information, but you are far more likely to encounter lengthy descriptions of my bowel habits, indepth discussions of my mutant boobs or a post combining wine and craft.  It all begins here and here.

You can also find me in Kill Your Darlings, online and print journal, The Victorian Writer (Health Edition Nov 2015), online for Writer's Victoria and ABC Ramp UP, and multiple online support groups. I've also contributed a chapter to a book about Dysautonomia. I've presented at the Emerging Writers' Festival (as part of Kill Your Darlings, Nerds gone Wild) in 2015. Been a featured artist for the 2015 Digital Writers Festival in conjunction with Extraordinary Routines and a panelist for The Digital Writers Festival 2016 . I've also performed pieces at a number of Salons for Writers Victoria. I've managed to get my mug on No Limits TV as a panelist, been interviewed for Hot Chicks With Big Brains Issue 1, and the Fully Sick Podcast.

The Players:

Rusty Hoe:  Me. Myself and I.  Charming. Gorgeous, Killer thighs.  Potentially delusional.
Mr Grumpy:  My husband.  Love of my life.  Occasionally makes me want to shave off one of his eyebrows in his sleep.  Champion farter, quite decent hand holder, incredibly humourous, purchaser of Lindt chocolate bunnies, lover of cricket, single handedly trying to bring bogan flannel shirts back into fashion. 
Rug Rats, Monkey Boys, The L-plater etc: My two male offspring. 19 and 22-year-old.  Although, they are responsible for nearly every grey hair on my head, they can pop up with a  fleeting moment of pure loveliness that makes it all worthwhile.
Freyja: Our Great Dane. Anxious, prima donna, who knows she is super cute, and milks it for all it's worth.  Continues to think she is a lap dog, and will attempt to plonk her 60kg butt on any unprotected laps.  Equally flatulent and slobbery and will do anything for a pat.
Sharona, Gloria, Roxanne, 5 chicks: Flock of pampered chickens. Living it up in a red chook house complete with discoball and bunting.

Now to conduct a scintillating interview with myself.

Me: Why are you called  Rusty Hoe?

Self: I was named Rusty Hoe by my delightful family.  One night around the dinner table, we were discussing how I had devolved from the brains of the family to not the sharpest tool in the shed.  Mr Grumpy, decided that not only was I not the sharpest tool in the shed, but I was the rusty hoe left out the back of the shed.  Whilst it took Mr Grumpy a while to catch on to what he had said, the monkey boys burst into fits of laughter at their father's faux pas.  What will be the salient moment my children will recall from their youth?  That their father called heir mother a 'hoe' at the dinner table.

Me: Your occupation is, 'Trophy Wife'?

Self: Why yes it is.  I know Mr Grumpy thinks of himself as super lucky to have scored such a fine example of womanhood as myself.  And it sounds much more exciting than unemployed, housebound and disabled.  I am also quite good at tripping over flat floors and walking into walls, does "unco" count as an occupation?  I definitely spend much of my day in this activity.  Once upon a time I had a real job as a Neuropsychologist, where I brushed my hair, put on real clothes, saw patients and carried on intellectual conversations.  Now I discuss bodily fluids, brain fog and shower chairs,.... actually nothing much has changed, though my current wardrobe sucks.

Me: So I hear you're from Australia.  Does everyone ride kangaroos?

Self:  Me, you're an idiot. We only break out the kangaroos for special occasions, like weddings and birthdays. The rest of the time we ride wombats. 

Me:  Why do you call Dysautonomia 'Bob'?  And did someone named Bob do you wrong?

Self:  Have you ever tried to say or spell Dysautonomia?  It's damn hard, especially when you have brain fog.  Don't forget I'm the woman who spent an hour looking for the car keys that were in her hand the whole time.  I'm not exactly playing with a full deck anymore.  Me, you've got to stop listening to country music songs.  No one named Bob did me wrong, this is not "another, somebody, done somebody wrong, song".  There is no vendetta against the Bob's of this world.  However, people who say 'revert back' should be flogged and made to watch Glitter on loop.  'Bob' was simply the first name that popped into my head.  It's short and sweet and spelled the same backwards and forwards.  Basically, it's less likely to be a balls up.

Me; So what's this weird arse Bob all about?

Self:  Well it's a bit of a  arse really in that it affects numerous body parts/systems.  There's a part of the body called the autonomic system (ANS), which is essentially the body's autopilot. It manages all the processes we don't consciously control eg blood pressure, heart rate, body temperature, digestion, to name but a few.  When it decides not to work, or work intermittently, anymore you get Bob.  For some it is only mild, for others severe.  I'm one of those anal retentive, perfectionist types so I went all out and got me some of the severer type.  None of this half assessed mild stuff for me. No way, no how.  Now whilst my tightly puckered sphincter of a personality helped me career wise, it is not so helpful on the Bob front. There is no cure, no known cause in the majority of cases, all you can do is manage the symptoms with medication, diet, and lifestyle modifications.  If you're lucky like me it gets to progress.  Woo Hoo, way to go anal girl!  (If you want to know more here's a tad more serious and scientific explanation).

Me: Bummer dude.  What type of Bob do you have?

Self:  As things stand now I have "Michelle's Disease".  Yup me an Lou Gherig, way to go Rusty.  I don't fit anywhere.  I don't meet the current criteria for POTS, NCS or the other main subtypes.  I have a little bit from each of the subtypes, the Heinz Variety form of Dysautonomia, if you will.  I do have OI (Orthostatic Intolerance) which is just a fancy way of saying standing up is a difficult and my body is much happier in the horizontal.  Gravity, the Moriarty to my Holmes.  I also have a delightful collection of other symptoms and diagnoses, because a girl can't have just one major illness to deal with. A neuropathy that is slowly (well actually not all that slowly) waging war on my body. It does have bonuses like I no longer feel it when I burn my arm on steam from a pot. Though it can be a bummer like I don't feel my arm when I burn it on steam from a pot. Woo Hoo!

I also have a collection of other fun diagnoses, but other than that, I'm a picture of health!

Me: I've heard you call it 'Yellow Wiggle Syndrome', why is that?

Self:  Greg Page, aka the Yellow Wiggle, is the most famous Bob patient.  He had to quit The Wiggles when his form of Bob became so severe.  It actually helped legitimize the disorder for many of us.  I.E. If Greg Page had to quit it must be a serious illness. Luckily he has better management of his symptoms and has donned the yellow skivvy once more. Sadly, not all of us are that lucky.

Me:  So now you've got a pacemaker? What the hell lady, you're only 40!

Self: I know, I know. I'm a freak. But hey, what can you do? Having a heart beat is kinda important, or so my doctors tell me. Apparently my lazy-arse body just couldn't be bothered beating it's own heart any more. Typical. Bradycardia does suck though. There is just no elegantly way to collapse when your heart rate drops too low. Plus face planting on your gross kitchen floor is not nice. The whole falling malarky is bad enough, but no one wants to come to with pieces of festy rice stuck to their cheek. Mind you having Jeri (my pacemaker), beating away in there is kind of comforting. And having blood get around your body does make you feel a wee bit better. Who'd a thunk it? Mind you reading that my pacemaker buddy, David Attenborough is not slowing down following his surgery, does reinforce that not only am I not an 80-year-old woman, but I am not even and 87-year-old wildlife loving man!. (Disclaimer: David Attenborough, may not actually know that we are pacemaker buddies. Disclaimer II: I may be somewhat delusional.)

Me: Anything else you want to let the world know?

Self:  I could go on for hours and hours, but really that's just cruel to everyone.  My final thought would be when the universe craps a huge steaming nard on your life you have to laugh.  Life's to short to be serious.  Plus Sci Fi rocks, I have a tendency to use the word 'crap', a lot, Jensen Ackles is welcome to come to my house anytime to give me back rubs, coffee and chocolate should be at the top of Maslow's hierarchy of needs, white chocolate is not chocolate, tequila should come in IVs, spelling and grammar are over-rated, farts are funny no matter your age, everyone should own a pair of Dorothy Shoes, and "I want to be called Loretta".