A Word From Our Sponsor XI

Well I have reprised my Emmy Award winning role as pharmaceutical lab rat once again this week.  After months of feeling like I am back to day one of my turbulent relationship with Bob, my doc recently uttered the delightful words "It may be time for a Midodrine trial".  Of course that led me to a full on Broadway dance of joy complete with jazz hands.  NOT!

Yep, trial time once more.  Treatment for Bob is basically a dose of medicine with a side of guess work.  What works for one doesn't work for another and may in fact create even more problems than what Bob can throw your way.  Joy.

Those of you who have read my blog for a while will know about my war with the Mestinon beast last year (you can revisit the insanity here, here, here, here, here, and here).  Now I did manage to slay it in the end, but it was a hard fought battle and led me to an unexpected and very unpleasant relationship with my porcelain lover, so I am less than excited about yet another foray into the unknown.  (Reading that back I realise that I sound like I have lost touch with reality a bit, but it does make sense, really it does).

Midodrine, like Mestinon, is like one of those relatives from "that side of the family".  You dread when they come to visit and know that if you don't hide the silverware and your wallet, you may end up with a $5,000 credit card bill linked to something called "Busty Asian Babes", and searching for grandma's silverware in a grimy pawnshop.

For those of you who are new or simply can't be bothered going back over past posts (not judging, just being realistic), Mestinon had been implicated in Gulf War Syndrome, YAY.  Though on a positive note, if ever there was a nerve gas attack in my lounge room I did stand a better chance of survival. See silver linings can always be found, and I am silver linings girl.  For example, when I heard that Johnny Depp didn't bathe, my first thought was what a great chance to offer him a sponge bath.  Silver linings people, sliver linings. 

Now my new bestie Midodrine, has it's own delights.  If you lie down within 4 hours of taking it you risk stroking out (luckily I get to take it 3 times a day).  Yep, obviously that makes it the top pick for someone with Bob, cause I never need to lie down.  Bob symptoms vs potential stroke.  Hmmm what to choose?  These are choices we are forced to make at this point in the cutting edge of Bob research.  Now I am still trying to find the silver lining but I'm sure it's there.  They are small so no big horse pills to swallow.  And they are colourful, little sunset orange pills, and I like colour.  Okay so they may be pretty crappy silver linings but I'm trying people, I'm trying.

So far I've had no run ins with my porcelain lover, and that is a good thing.  Lets face it hooking up with an ex never works out well.  However the excruciating headaches, exhaustion and chest pain are a little off putting.  Yesterday I had to go to the train station and by the time I had reached the ticket box I felt like I was having a heart attack (no exaggeration involved), which really wasn't all that pleasant.  Considering I was overtaken by a little old lady with a granny trolley I'm guessing it wasn't that strenuous a walk.  This does not bode well for my plans of exercising.

I wont bore you with the trials of even getting this stupid, potentially fabulous drug.  Suffice to say, it's not on the PBS in Australia and is considered experimental.  This means tedious paperwork, dealing with useless government bodies, the selling of my left kidney to pay for it, and lots of beating my head against a brick wall. 

On a brighter note I was recently asked to be a writer on a new group Dysautonomia blog called DARE: Dysautonomia Awareness Rarely Experienced.  I am joining a group of fabulous ladies (still unclear why I was asked but hey I'll go with it, until they realise their mistake and bring out the torches and pitchforks), from all over the world, different ages and backgrounds.  The aim is to raise awareness, to provide a central information hub and an unrestricted voice for those on the Bob journey.  I will still be contributing to the fabulous 12 More Pages, so now I just need to find the extra braincells and energy to get myself organised.

So in the words of the brilliant Monty Python (yes I'm going through a Monty Python phase), I'm following the philosophy of Always look on the bright side of life.

(Some days you gotta laugh even if you make an ass outta yourself).

So bring on the Camembert.

The Lab Rat Michelle :)

Face Validity

Although I generally hide it well you may have some sense that I am rather unimpressed with the terms my doctors use to describe what I experience with Bob. The term 'Simple Faint' is my nails on a chalk board. Even thinking about it leaves me with a chill down my spine, a rapidly sucked in sphincter and a very unattractive lemon sucking grimace.

Each time my doctor uses it I want to hold her down and make her smell my elderly father's paint-peeling, kitten-killing, shoe funk, until she agrees to never use those hideous words again. Yes, I do think it's healthy to add a little humour to your torture techniques. 

Of the many, many, oh so many, years of Statistics, Statistical Methods, Research Methods, or Mind Numbing Useless Number Crap Techniques, classes that are forced upon you if you decide stupidly to undertake a psychology career (sounded like a good idea at the time), the one thing I remember clearly is the concept of Face Validity.  Does a test look like what it is supposed to measure?  For me the term 'simple faint' is not up to the task.  It reminds me of the Black Knight's scene from Monty Python and the Holy Grail

(BLACK KNIGHT:  'Tis but a scratch.
  ARTHUR:  A scratch?  Your arm's off!
  BLACK KNIGHT:  No, it isn't.
  ARTHUR:  Well, what's that then?
  BLACK KNIGHT:  I've had worse).

But I am aware that I could potentially be over-reacting thanks to my irrational hatred.  I think that I may actually benefit from a reality check from those with more than 3 brain cells.  I may also benefit from a Xanax, yet another bottle of sav blanc and years of therapy, but that is for another post.  So I thought I'd try and capture what a little of what a 'simple faint' feels like for the uninitiated.  Let me know.

It begins with a whisper.  Soft, unintelligible words.  A shiver runs down my spine and my body tingles.  Something is wrong.  The whisper becomes a murmur.  Troubled voices mingled together.  A persistent rising hum suffuses my body.  I try to shake it off but it is is determined, it will not be stopped.  A sense of danger, intangible, threatening, swirls in shadows on the edge of my vision.  My mind begins racing, struggling to try an make sense of the insensible.  It has begun.

A faint sheen of sweat springs up all over my body and I begin to tremble.  The world loses cohesion for a split second, reality rips and tumbles. Then, just as suddenly, I am slammed sharply into focus. Lights are brighter, sounds piece my ears, razor sharp and deafening.  I struggle to breathe, to collect myself.  Suddenly the world dims.  Images are moving, distorted, bloated, shrinking.  The world appears as seen though the bottom of a drinking glass.  Arctic gusts and Saharan heat war for control, moving through my body.  My senses cry out unable to find equilibrium.  Waves of nausea hit and the world is turned upside down once more.  My face tingles as I feel my blood retreat deep within me.  A primal drive to preserve the heart and internal organs by sacrificing the extremities. It cannot be overridden.

My mind races and the murmur becomes a roar.  I struggle to focus.  To will my body to stillness.  To quite the growing storm within.  The world is slipping from my grasp.  I am trapped in a clammy embrace from which I cannot escape.  I try to speak but cannot form words.  Meaningless sounds fall from my lips.  Anaesthetised muscles refuse to coordinate.  My tongue is thick, my mouth dry.  I disparately try to stop the vomit rising in my throat.  Wave upon wave of nausea crash upon me as I struggle to reclaim control.  

Time no longer has meaning.

I am caught in a maelstrom of my body's own tormented design.  The world tilts and rocks, I am thrown against the walls of my house.  Afloat on an invisible rocking boat.  I am buffeted by winds no one else feels. The real world dissolves.   With each step my muscles begin to lose cohesion and strength fails.  My body loses its grip on the corporeal and becomes a thing of mist and fog.   I am caught in a waterfall, deafened by the torrent that surrounds me.  I cannot make out  the voices beyond the storm.  Fragments of words pierce the roar.  Safety in the form of my couch retreats from my outstretched hand. Receding into the distance that I can no longer traverse.  Invisible hands hold me, pulling me towards the ground.   The carpet beneath my feet turns to quicksand and I am caught.  I sink down, melting into the ground beneath me.  I can no longer resist, the world is lost. 

Darkness closes over me.

Sound.  Soft and muted.  Incomprehensible at first, meaning slowly returns. The hum of the lights.  A bird calling outside the window.  Voices in the street.  A faint light appears.  I struggle to focus through the tea stained water before me.  Distant at first.  Then as if recognises my rising awareness it rushes closer and closer slamming me back into reality.  

My body aches.  My head pounds.  The carpet beneath my cheek feels rough, prickly against my stressed skin.  All encompassing exhaustion resonates throughout my body.  I groan as I strain to raise my head.  My head spins as I manage to sit up, my body proped against the wall. 

I struggle to rise.  First to my knees and finally to my feet.  I stumble unsteadily to the couch, now but a few steps from me.  I slump onto the soft cushions.  Eyes close and I breath slowly.  Weakness suffuses my body.  Sleep slowly takes over.  No strength is left to fight off it's comforting arms.  Peace.

Simple?  No?  It's probably important to mention that this can occur over the course of a couple of minutes or a few seconds, depending on the day.  YAY.

So on that note, I bid you adieu fair readers and leave you with another classic Monty Python moment.  The Killer Rabbit of Caerbannog:

(Tim the Enchanter: That's no ordinary rabbit! That's the most foul, cruel, and bad-tempered rodent you ever set eyes on!).

Cheers
Michelle :)

Hailstones, Hairy Legs and 'Arse Illnesses'.

Despite rumours to the contrary I'm still alive and kicking. Well maybe alive and sitting.  Lets go with, alive and breathing.  Well except when my body decides that breathing should become tricky.  Inhale.  Exhale.  Inhale.  Exhale......complex stuff apparently.  Maybe I should just go with existing, and continuing to swear and shake my fist at the universe. 

I'm starting to think the universe is actually one of those mean girls from high school.  You know the ones I'm talking about.  Perfect hair, perfect clothes, popular, pushes you over in the change room whilst you are getting dressed, so you trip and fall flat on your face wearing nothing but a singlet and your granny undies around your ankles, because it's soooooo funny.  Mind you I am kinda hoping that like at my 15 year high school reunion, the universe will get its comeuppance and become a fat, dull women, stuck in a loveless marriages to an obnoxious alcoholic.  Not that I'm bitter or anything. 

So to sum it all up.  Health shit.  Brain long gone.  Bad attitude continues.

I do apologise to all those who've sent me messages, emails etc and have yet to receive a reply.  They were much appreciated but over the last, well forever, about the most I've been able to stretch my brain to do is the occasional one line Facebook status update.  Lets face it when you only have three braincells left and two of those are dedicated to remembering to breathe, it puts quite a lot of pressure on that one little neuron.  The little fella is doing all he can but he has a lot on his plate at the moment.

I have roughly a bazillion blogs to read thanks to those dedicated bloggers who blog rain, hail, or shine, hardworking bastards.  I may just have to start over from now, as I doubt I'll ever get caught up otherwise.  Frankly reading well written, entertaining, grammar perfect, prose or poetry is, aside from the lost brain issue, rather disheartening at the moment. Though I must say I have really enjoyed Miss Buckle, whose beautiful pictures are like a little ray of sunshine on my crappy little mind.  Cupcakes today, does it get any better?

It's been a bit of hectic time around here, aside from my health.  For those who don't live in Australia, you are probably unaware that my fair city of Melbourne experienced it's worst thunderstorm in history the Saturday before last.  Hailstones the size of cricket balls decided to hit our house with abandon.  This left us with broken windows (any tips on getting glass shards out of toaster will be much appreciated), flooding, shredded carport, nude trees, and a dripping roof.    I think we will be playing "who can find glass shards in the weirdest places?", for months to come.  Fun for all the family. Actually we got off much better than a lot of our neighbours so can't really complain.  I will now suck it up and move on.

Melbourne Hailstorm 

My attempts at being a real girl have taken another hit.  Whether its Bob or one of his dodgy relatives, neither my cardio or neuro can tell me, but my super sensitive reflexes have put paid to the annoying, but necessary, act of shaving my legs.  "Go get your legs waxed you stupid wingy woman", I hear you say.  Well bite me. I refuse.  Number one, it hurts and I am a wuss.  Number two, you have to look at those long fly strips covered in your leg hair.  Ick!  Number three, that would be giving in and dammit, I may haemorrage or lose a leg thanks to an errant blade flick, but I would rather have be known as Pegleg Michelle than give in.  Mind you this logic is coming from a woman who thought that chopping off my own fringe in a fit of pique an hour ago was a good idea. So my reasoning may be questionable.

Note to self: do not cut own fringe you stupid twatt.  It never works, and no one is going to buy your story that it's an artsy haircut in honour of Fashion Week.  

As any woman knows shaving your legs is a rite of passage.  You must defy your mum's rule that you are too young to shave your legs.  You must find a crappy disposable Gillette razor up the back of the bathroom drawer.  Be totally unaware that it's your Dad's razor, or that there are even such things as shavers for men and women.  You must sneak into the bathroom when your mum's out in the garden.  You must sit awkwardly on the edge of the bath with your legs arranged like a giant pretzel.  You must try and do it really fast so you don't get caught.  You must wonder why the razor suddenly stops and won't go further up your leg no matter how you pull on it.  You must glance down at your shin and freeze in horror as you realize the reason the blade wont go any further is because it is embedded in your shin.  You must run screaming to your mum who proceeds with the requisite "I told you so" speech and eye rolling, and then washes out your cut with Detol leading to lots of big girl screaming.  In one week pain forgotten, you must set yourself up in the bathroom again, determined to prove your mum wrong. 

My shaving history has been one of knicks and cuts and an unaliable inability to get every last hair, leading to weird hair patches on ankles, knees and shins.  Hence you may wonder at my saddness at the passing of this dangerous personal grooming event.  But dammit I'm a girl and I should be able to shave my damn hairy legs.  Maybe I should just go with the European trend and embrace my gorialla legs and hairy armpits.  Winter is coming up anyway, so no one will know.

Alas I fear despite my determination to continue, shaving is now a thing of the past.  Running a shaver lightly over my knee and watching my leg leap out in front of me shaking adds a whole new degree of difficulty to what was already a difficult task, with the constraints of Bob.  Add in the patchy sensation of SNAFU, which appears to be spreading, and I may as well get used to my eco-friendly if sight-unfriendly, leg warmers.  I may stretch to using one of those foul smelling cremes that dissolve the hairs on your leg for special occasions, but I have a slight aversion to the frequent use of something that is able to disolve hair, and as the packet states, can cause chemical burns if left on too long.

Maybe if my leg hair gets long enough I could braid it and do cool dye colours.  If the fashionistas can get away with mantyhose, I can surely start a new trend in eco-friendly, au natural hairy fashion.

 (Sexy? No?)

In my recent bouts of procrstination and mindnumbing dullness, I have also added Google Analytics to my blog.  I am now addicted.  I am particularly fond of the section which lets you see the Google Searches that have led people to find your blog.  Apparently if you put in "dysautonomia + marijuana" you come to my blog, who knew?  One reference to medicinal marijuana is all it takes.  I am not alone in this as Lucy from Costochondritis was recently found thourgh a similar search.  Something you want to tell me Lucy?  It is clear now that between munching corn chips and rolling a joint, Cheech & Chong, have finally found the internet.  My personal favourite was that my blog is linked to searches for "Arse Illnesses".  I laughed, and I laughed, and I laughed.  It is so appropriate on so many levels and made me so proud.

So on that note, and in honour of my ganja consuming readers, hand over the Dorritos and:

I say
Pass the Dutchie on the left hand side
Pass the Dutchie on the left hand side
It a gonna burn, give me music make me jump and prance
It a go done, give me the music make me rock in the dance
(Musical Youth,1982) *

Cheers:

The Arse Woman aka Michelle :)

* Trivia for the Day: Originally, this song was "Pass The Kutchie," meaning a marijuana pipe. However, because all the members of Musical Youth were between 11 and 16 years old at the time, the group's manager suggested a lyric change, replacing "Kouchie" with "Dutchie", a cooking pot.

Forget Me Not.

He should be eighteen
But will remain forever nine
The little boy with the laughing eyes
And the mop of curly untameable hair
Caught forever in endless days of childhood

A chance word
A song on the radio
It catches me unaware
Reopening a wound that has never fully healed
My heart screams in pain
And I am hurled once more upon the jagged rocks of memory.

A phonecall in the night
My sister's tears
Her mumbled words
Her grief rends the world
I hold her tight
Yet cannot touch her
Tethered together in a feeble attempt to save her
To save myself
Relentless storm clouds beat down
We are all swallowed whole

Casseroles, bread, an ocean of milk
Why do they think food will salve us?
But they must do something to save themselves
Empty thanks yous
Awkward words
Awkward silence
Faces come and go
They are all strangers
In a strange land
The world is lost
There is nolonger meaning

His tiny body laid out before us
Witness to that which should never be
I should never have looked
That should not be my last memory
I tear at the visions in my mind
Trying to erase the moment
It cannot be undone

Emotions burning me to the core
A thousands suns to sear me soul
I can stand no more
My mind rebels
And I am numb


I am no longer really here
Faceless mannequins sit before me
They fill every corner of the church
And spill out onto the road way
Silent sentinels to my grief
The world is muffled and grey

I can barely feel the wood of the pulpit beneath my hands
Witness to a million words of love and grief
Aged flaking lacquer slices my fingertips
And I feel nothing
I am a voyer
Disembodied and disconnected
The woman standing before me is a stranger
Her ashen and tear stained face belong to another.

Words on paper in my own handwriting
Seem the work of a stranger.
Images flicker in my mind
My sister and I sitting alone
In the lounge room
The door barred to keep the world outside.
Paper and pen cannot hope to capture
What is lost.

Do the words matter?
Or is it the act of writing?
The memories
Laughing, crying, screaming
We hold each other without touching
Each knowing that a single touch to comfort will break the spell.
And we will drown once more
We must hold this moment of sanctuary
Or we will never survive the reality
Beyond the door

My mouth moves
I speak the words
But they have no meaning.
Remember the joy
Remember the love
Hollow, meaningless, lies
I lie to myself, I lie to everyone
Who am I trying to convince?
A piece of me is missing
I fear I will never find it

I swallow my grief
I cannot show it
False strength
A thin veneer to cover the maelstrom that consumes my soul
My skin is sensitised
Each touch meant to comfort
Becomes a thousand razor blades
Slicing my flesh to shreds

Time heals all wounds
Except this one
The fragile scar continually breaks down
A chance word
A song on the radio
And I am transported to that day once more

I cannot breathe
Tears run unchecked
A tide to swallow the world
The waves close over my head
The darkness blankets me
Peace is forever denied

I must swallow myself
Or be lost forever
I take the pain and put it in a box
It struggles to escape
And I tie it tight
Life goes on because it must
But the light of day is forever dulled


If the only way to be rid of the pain is to forget
I choose always to remember 
If you cannot feel love without pain
Then the pain will be borne
And he will be forever loved

Michelle

(This is in memory of my beautiful nephew Jack who was taken to soon.  Nine years is as yesterday)