I will now impress you all

Well I've done it again. Broke out the camera and tried to be coherent for more than one nano second.  Why do I do these things?  Given that fact that Eunice is out on indefinite stress leave, you'd think that my nearest and dearest would intercede on my behalf and remove the camera from my delusional hands.  But no.  I'm starting to think they find the whole thing rather amusing.  Our own familial form of the American Idol auditions where tone deaf fools get up and sing Celine Dion abominations, completely unaware of how truly crap they are. 

Through my filmic endeavours I have discovered that I have a fondness for the word 'crap', that I forget to brush my hair, and that my misbehaving eyes are now accompanied by misbehaving mouth.  I think my next craft project will be to create a dapper tin foil hat to complete the ensemble.  Though I will have to borrow some cats from my neighbours as two dogs don't really give the right vibe.

As my creative endeavours did leave me a little the worse from wear (ie, in excruciating back pain and unable to move from the horizontal) my delightful children brought me a glass of wine and a pink bendy straw.  I am raising them right people.

(love my kids)

Cheers
Michelle :)

For those who don't know the joy of Faith No More, have you been living under a rock?  Here is Falling to Pieces 1990.  Brings back memories of Year 12 parties in dodgy backyards, a bucket mix of miscellaneous alcohol, and a whole lot of teenage angst.  Good times.

A Word From Our Sponsor XIV

Alternative title: I Am the Walrus, Koo Koo Achoo.

Shoot me now. Really, please do.  Or at least knock me out for a fortnight and wake me up when the world is a rosier place.  Next to the recent long list of horrific natural disasters that have happened around the world, my own grumbles appear petty. But hey, that has never stopped me from voicing them.  I'm sure others want to hear my long list of woe is me.  Particularly as I've been on strong pain meds for the past week.  If I break out in a tortuous rendition of Lucy in the Sky with Diamonds, blame the meds and look away quickly.  When combined with my delusional belief that I am undiscovered singing sensation thanks to a religious devotion to American Idol, it's not going to be pretty.   I believe "hot mess", is the term being used by the kids these days, and may best describe my current level of decrepitude.

In time I will regale you with my exciting exploits of the past week.  Be warned it involves my lady bits, a radiologist I call Igor the Inept, who makes Peter Garrett look competent (sorry, inside Australian political joke.  Peter Garrett in Midnight Oil equals musical gold.  Peter Garrett selling his soul to the devil to become yet another useless politician equals horror movie), and Mr grumpy adding adult jokes to an ABC book he was reading to a complete stranger's two-year-old whilst I tried to not pass out in my local ER.  Good times.  Though the fact that the little boy kept yelling "mummy" every time Mr Grumpy got to "E is for elephant", still cracks me up.

(Do not let this man near your ladybits)

Long story short, what should have been simple pelvic and hip scans has led to popped discs in my back, a popped right hip and and introduction to the delight that shall for ever be dear to my heart, Oxycontin.  I have spent the past five days flat on my back, trying not to move, whilst my three slave boys have brought me chocolate, drinks and taken care of household chores.  I think they realised it was an above average amount of pain as I actually requested an ER trip, when normally I would rather poke my eyes out with a rusty spoon and sit through the entire movie travesty franchise, that is Twilight, than go to the ER.

I have now added the joy of trying to pass petrified pain med poo, and my youngest monkey boys pestilence (common cold to him, ebola to me) to the mix.  Uncontrolled sneezing and popped discs do not good bed fellows make. 

I am still not up to date with responding to comments, messages or emails.  Part of that is due to FB which is trying to drive me to drink, by not letting me access my messages.  If you'll get onto that Mr Zuckerburg, I'll much appreciate it.  And part due to the fact I break out in tears every time I read the lovely responses to Processing.  Stupid drugs making me teary.

Hilariously my friend Kerri has given me a copy of a speech she is due to present at the end of this month, to proof read.  I'm not sure if writing "I am the Walrus" 2O times in the margin and drawing pictures of unicorns in left over dark chocolate Lindt bunny crumbs is going to help, but damn it, aint no mountain high enough, or pain meds sending me gaga enough, I am going to proof read this talk if it kills me.  That's friendship people.  Kerri is a tireless advocate for MS patients here in Australia, so the least I can do is add my cracking intellect to her talk.

(Bob + pain + pain meds + passing rock hard number 2s + pestilence = ......)

Okay, time to go and pass out in a corner somewhere.  I do highly recommend pouring eucalyptus oil in the bottom of your shower, turning on the hot water, closing the en suit door, lying on the tiles and inhaling the fumes, whilst whimpering in pain.  Not sure if seeing Ringo Starr sitting cross legged on the edge of my toilet, drinking champagne out of Thomas the Tank Engine's head is a good sign.  But his voice is rather hypnotic and he had some really good ideas on how to de-mould my tub.

Ugh!

Do-over week please.

Koo Koo Achoo my friends.

Michelle :(

On a serious note:  please give to one of the many funds for the survivors of the Japanese earthquake and Tsunami and the ongoing nuclear threat.  I was lying in the ER watching it unfold live on TV and I still can't wrap my head around the size of this tragedy.  My heart goes out to them and all those around the world touched my natural disasters over the past few months.

I do find singing dramatic 80's tunes as loudly as possible does make me feel better.  This (1982, original filmclip) one of my favourite power ballads.  Sung many times into my hairbrush as a child, sung loudly in the car to the horror of my children and their friends, as an adult.  "Turn around bright eyes. Turn around bright eyes.  Turn around", I hear you Bonnie.  I hear you.  Children of the 80's sing it loud and sing it proud. 

1984 live at the Grammys.  Bonnie Tyler, Total Eclipse of the Heart.

The View From My Couch: Healing Places

It's not often I can say this, but I love my GP (General Practitioner) and her medical centre. I know, me giving a doctor a shout out, weird hey? But I do. When I see her it's never a stress. She goes with flow. She listens. She's helpful. And, perhaps most importantly she has a sense of humour.

 (If you have to be sick at least be sick in  a picturesque place. 

It's quiet except for local wildlife, and filled with every hue of green imaginable.  

There are even fish ponds and seats outside.)

Case in point. I rock up on Tuesday for my appointment, green, shaking, just a little wobbly. The counter staff don't bat an eyelid. They just take me out back. Hand me a puke bag and let me lie down in the quiet treatment room. No hassle. No stupid questions. No, how's your mother? My GP walks in laughs and says well "that's not how my patients usually great me" as she spies my legs elegantly shoved up against the window frame. She didn't make a big deal about my shaking as I stood up. She didn't make a big deal when I took an hour and a half to put on my thongs (shoes not butt floss underwear), thanks to uncooperative shaky feet. She gives me the option for lying down in her room but doesn't push the point.

 (It just doesn't feel like the road to a doctor's office)

She's helpful. She knows my case and also asks about my son's current issues. When she orders more tests and scans she gives me a heads up about a possible internal ultrasound because "you want to be mentally prepared when they start waving that thing around down there" (please, please, please let them get what they need from the outside sweep). As she hands me my new set of referrals she says "here's hoping for nothing new to be broken".

To top it all off her name is Cicily, which always makes me think of Northern Exposure.

The centre is in a gorgeous natural setting, and I love the decor.  It's clearly a medical centre but minus the cold clinical feel of 98% of the doctors offices I visit.  If you have to get felt up by strangers, this is my choice of location.

(It's red and Asian inspired, as soon as I walked in I knew it was the right fit)

Now I'm off to the old dark and dingy local hospital to be felt up by yet another stranger.  Fun times.

Cheers

Michelle :)

Highlights.

This has been a week of highlights in Rustyville.    Here are but a few.


Have used Charlie Sheen as my new barometer of crazy, and have decided that on the newly devised Charlie Sheen Insanity Scale (CSIS) I am completely sane.

• Not to self:  using a man who states that he is not bipolar but "bi-winning" to gauge my own sanity may in and of itself suggest that I am well on my way to Loonyville.

Sang badly and loudly to Evanescence in the car. 

• Note to self: don't listen to dramatic emo music whilst already in the "I'm the worlds worst mum" state of mind.  The sight of my sobbing, snot-smeared face, belting out misheard lyrics may qualify as road hazard to other drivers.

Started, yet again (100th times the charm), to write a book (stop laughing Mr Grumpy).  First paragraph alluded to cousin loving in my pre-electricity familial tree, and a parental "lie back and think of England" sexual attitude, as potential causes for my ill health.   I'm sure my parents will be proud.

• Note to self : check if it's possible to add banjo music to a book?

Have repeatedly used the phrase "but um" in conversation when words and conscious thought have failed me.  Children think this hilarious, thanks to an episode of  How I met your mother, where one of the characters said "but um" so often on her TV show, it was turned into a drinking game by college students.
For example:
Me:  "Eldest Monkey Boy!!!" (screeched out loud enough for my deaf and confused elderly neighbour to hear).
EMB: "Yes mommy dearest" (must stop threatening children about using wire coat hangers).
Me: "I need you to.............but um".
EMB: "But um!" (snigger)
Me: "Stop that!  Now, but um.....  Damn it!"
EMB:  "But um!" (more sniggering)
Me: "That's not funny.  Now, but um..... Damn it!"
EMB: (rolls on floor, holding sides whilst laughing and shouting) "BUT UM, BUT UM, BUT UM".
Me:  "Fine.  You are now grounded forever.  Right. (deep breath) Now, but um......Arghhhhhhhhh", (storm off dramatically).

• Not to self:  purchase a DeLorean and flux capacitor, to enable current self to go back in time and slap younger self for thinking having children would be a wonderful idea.

Have only just remembered I have a Twitter account.  Am amazed that people have decided to follow me even though my last conscious tweet was on the 9th of January.  Thankfully, I had linked up my FB page to automatically tweet my frequent witticisms, so it looks like I am a social media savvy tweeter.  Rather than a sad old woman who keeps forgetting that she has a Twitter account.  Though I am just a little concerned that Twitter keeps suggesting I follow Justin Beiber and Kanye West and some strange woman who wants to show me her breasts.  Explain yourself Twitter.

• Not to self: must discover what else am I forgetting. Lets see.  Wearing underwear?  Check.  Used BO basher? Check.  Fed spawn of Satan/children? Must have, can't hear whinging. Check.

Have attempted to answer the multitude of emails, messages and comments that have been building up, thanks to the "Vacant" sign that has taken up residence inside my head.  I'm really not trying to be a rude cow by answering in such a tardy manner.  Just when you are down to one brain cell, who refuses to work overtime and insists on taking every last second of her allotted coffee breaks, it can be a slow process. Especially if you want a coherent response.  However, if a response composed completely of neologisms is okay, let me know and I'll send one off immediately. I'm sure at my current speedy pace of one response a day I will get there. 

• Note to self: must get around to hiring Eunice a PA.  Hot, shirtless, cabana boys are encouraged to apply.

Have alternated between staring at the ceiling for hours on end without the pleasant distraction of considering how I can get away with smothering Mr Grumpy in his blissful sleep (he was away for work), and coma sleep.  As usual the universe has delighted in making fun of my sleep challenged life by sending this link my way.  And yes it is in Finish, or Finishian, or whatever the correct term is.  Yes universe send me a link to artsy pictures of  Finlandites (it's my blog and I will make up words if I want) blissfully asleep, bastard.

• Note to self: must stop thinking that the universe is so obsessed with me that it would go out of it's way to mock me on a regular basis or I will end up at the 'bat shit crazy' end of the CSIS.   

 

• Extra Note to self:  stop watching any TV show, radio broadcast, newspaper column, blog, or internet site that makes reference to Charlie Sheen in any way.  Must make life a Charlie Sheen Free-Zone. Though I am kinda interested in how he cured himself with his "brain".  Maybe I should send Eunice round to his place for a few pointers.  On second thought, he's liable to make Eunice his next 'goddess' and I couldn't put the old gal through that.

So dear readers, what delights have been the highlights of your week?  I hope you too are livin la vida loca*.

Bring on the margaritas.
Michelle :)

* Should I add that my eldest loved Ricky Martin when he was little and knew all the words and dance steps to his early albums? I'm sure he wont  mind me sharing.  He also had a thing for Shania Twain's I feel Like A Woman, but that's really something I should probably keep for his 21st.

A small musical interlude in remembrance of my pre-children, pre-husband, pre-sick golden days. I give you Blister in the Sun by the Violent Femmes (1982).  Plus this particular film clip has John Cusack in Grosse Pointe Blank, and includes a cat puppet.  What more could you want?

Processing

To  post, or not to post?  That is the question.  It's hard some days to decide what to write about.  How much of yourself do you share?  Are there topics that simply shouldn't be put out there?  I need a Blogging for Dummies, that sets out neatly, the okay and not okay topics.  Not that I'd probably read it.  It would just end up sitting on the table collecting dust and coffee cup stains.  Or end up as another brick in my fall back plan for fame, ie to get onto Hoarders.

I'm pretty much of the school that says sharing stories makes them more bearable.  Blogging as therapy.  I think it works, and it's way cheaper than the regular types.  So often we hide what we think is shameful, or too personal.  I know for myself at times, pushing the 'publish post' button, feels like I'm standing naked in the middle of the crowded room.  Exposing yourself can be a strange melange of pee your pants terrifying and exhilarating.  It can be freeing, as you find others who have shared your experiences and support that comes form unexpected quarters.  And finally those mountains can be seen for the molehills they truly are.  So I'm going to take that plunge once more and hope that if nothing else, it helps me sort through and organise my personal maelstrom of thoughts and emotions.

We all have fears.  Over the last few years I've had new ones crop up.  Ones I never thought I'd have to confront.  I don't usually voice them as, illogically, it feels that to give them voice you give them power and that increases the chance they will become manifest.  Stupid I know.  My practical science background laughs derisively at my foolish illogical side.  But the reality is that voiced or unvoiced they sometimes come true.   Sometimes life is simply completely out of your control and you have to find a way to deal with what comes your way.

As my own health issues have progressed over the past few years a new fear has crept into my mind.  Although Bob is not currently thought of as a genetic disorder, except in very specific forms, it can run in families, as can some of my other health issues, and there is an increased risk of yet other cluster illnesses.  I have spent many a sleepless night worried that some part of my defective genes will be passed onto my children. 

As a mother you have an instinctive drive to protect your children from harm.  Every tear, every disappointment, every hurt, rips out your heart.  Knowing that you may be the cause of that hurt, is more painful than words can describe, and there is no salve.  And that is the path I am now treading.  Over the past year my youngest has been on the doctor roundabout as his young body has started to have problems.  Over the past year I have come to the realization that my broken genes have been passed down to those I hold dearest.

I've had a little pit of fear stewing in my belly.  Every time he has felt nauseous.  Every time he has run to the loo.  Every time he looked pale.  Every time I have seen him limping along.  I have seen a little still from my own teenage movie.  And it has scared me.

Even without a doctors diagnosis I've known for some time that he has developed the same gastric issues I had as a teenager.  The same food intolerances, which are now confirmed by recent tests.  Similarly, I've know that his poor little joints are like my own.  I know the pain he is feeling only to well.  Yet despite all the evidence I have held onto a little glimmer of hope that I was wrong.  That it was indeed "all in my head".  But it was not to be.   And I know that what he (and to a lesser extent my eldest) is experiencing is due to my own faulty DNA.  And the guilt is overwhelming.

I've been good at stuffing those pesky emotions down.  But sitting in the phsyio's office listening to words like "sublaxation" and "bad collagen" has hit me harder than I ever thought possible.  I was totally unprepared.  Those words said out loud about my child, were like a clarion bell.  It was real.  More real than I have allowed myself to believe and it's like I'm now standing under a never ending waterfall of guilt.

I know it's not truly my fault.  As my best friend pointed out (and I am so glad I have her voice of sanity in this matter) it's not like I decided to pass this onto my children.  But it doesn't stop the feelings of guilt, rational or not.  In my good moments I know the truth, but in those other times........ 

A mother's job is to protect her children, and this feels like I have failed on the highest level. I know only too well what it's like to be a teenager with health issues.  What it means physically, socially, and emotionally.  And I think in many ways it makes it better, and conversely, far far worse.  It's a challenge to keep perspective and stop my own baggage from interfering with what I need to do now.  To not transfer my own emotional memories onto his little shoulders.

Last night I strapped his ankles in a vain attempt to keep them in place for his cricket training, knowing full well that it was more placebo than panacea.  I spent the drive back home bawling my eyes out as grief and guilt took turns at beating the crap out of me.

I am in that horrible acute phase, where the the roar of my emotions is deafening.  I have argued irrationally with Mr Grumpy, as my own insecurities and baggage have taken control.  I  have yelled at the dogs and screamed abuse at the washing machine for not washing quickly enough.  Even the discovery of the empty coffee container feels like a deliberate personal attack.  It's my irrational side in all it's glory. 

I want to punch something.  To yell and scream.  Or grab a bottle of tequila and hide under the covers until I can view the world through the same beer goggles that transform the world to hilarity and beauty.  But I'm a mum, and mums don't have that luxury.  We have to hold our shit together.  Stuff down our fears, put on our calm faces and tell them it's going to be alright, even when it's not, even when that little voice inside is screaming in our ear.

There is a creeping fear that this may be indicating the arrival of Bob in his life, but I can't face that just yet.  I'm going to put that one in a box, tie it up in chains, and bury it deep down.  I'm not ready to tread that path.  Though I know that if the time comes, I will.  But until that time I shall say a prayer to every deity known to man that he will not have to take that journey, that I can spare him from at least that burden. 

I know that logically, at the least, I can now find him the help he needs.  I can give him the gift of believing him when he says he is in pain.  I can support him in the multitude of ways that I didn't have as a child, when these disorders were not recognized and the title of hypochondriac was readily bestowed by the medical profession and family alike.  I know the power of a diagnosis.  I am glad that it gives us a starting point from which to tackle these issues.  But none of that changes the fact that I cannot give him the gift of good health.

My own health issues mean nothing in the face of those of my child.  I want to have the magic wand I had when he was little.  Where I could make the monsters disappear with my miraculous mummy super powers.  Where I could kiss his bumps and scratches better.  Where he knew without doubt that I would keep him safe and protect him from the harms of the world. I want to wrap him up in joy and peace, and let him live in a pain-free world. 

So I will take a breath.  I will dry my tears and patch my heart.  I will put on my practical hat.  I will book the appointments.  I will take the steps.  I will don my armor and fight for him.  I will help him find the path to acceptance of his physical limitations.  I will help him discover that his true gifts are not the ability to kick a ball, but lie within his spirit and generous heart.  I will do all in my power to heal and soothe.

And I will try to find that place where I can be okay with all of this.  But at this stage I am still processing.

Michelle

Holy Crap I'm Normal! Australian POTS & Dysautonomia Lunch 2011.

Lordy, it's taken me forever to get around to this post.  It's been on the cards for ages.  Started and stopped, started and stopped.  Partly due to slackness.  Partly due to a rather prolonged and continuing period of bleechness.  Partly due to a lap top that was on life support.  But I'm going to pull my finger out.  Mr Grumpy has done a MaGyver and created a laptop with a piece of duct tape, a used tissue and a hairy piece of gum he scrapped off the bottom of a table at the local Maccas.  He may not be fancy.  He may not have speakers. And he may insist that it is still 2010 despite repeated reboots, but technically he is a laptop once more.  So I will now put on my Uri Geller hat, and will my fingers and brain to coordinate enough to tap out a couple of sentences on the old dog hair encrusted keyboard.

Time to get away from the "woe is me, life is crap" mantra I've been spouting of late.  Time to find my happy place and live in the warm arms of denial for a few minutes.

 (FB Group)

A few weeks back (well actually a bit longer) I finally met a bunch of fellow Bobettes here in Melbourne for lunch.  For a while now we've been in contact on an Australian FB group, with Bobettes coming from all around the country and New Zealand.  The Dysautonomia community is very small here in The Land Down Under.  Hell you are hard pressed to find a specialist, let alone others in the same leaky boat.  But what started out as a handful of people has now stretched to 43 members!  Diagnoses are varied, from Postural Orthostatic Tachicardia Syndrome (POTS) and Neurocardiogenic Syncope (NCS) to WTF?, but we have a wee little community who all share a group of pesky symptoms and a body that is not playing the game.

 

 It was a brilliant day.  The first time in a long time that I actually looked forward to meeting a group of strangers.  Not that they are really strangers.  Over the past six months we have all shared the highs and lows of living with Bob.  The daily struggles, the tears and the hysterical laughter.  It has been a great place to share local information, which is sorely lacking, and to find normality in the most abnormal of circumstances.

I can't recall the last time I went somewhere, where everyone reached for the salt and piled it on their lunch, and no one batted an eyelid.  Or guzzled water by the gallon.  Or did the standing shuffle to get the blood flowing.  Where the bazillion things you do to simply last through a meal or stand up, and normally makes you stand out like a freak, finally feel normal.  For those few hours our shared abnormalities were made normal and it was wonderful.

To sit and laugh with people who know the joy of lying down on floors in public, throwing up, looking like a drunk and all the rest of the joys that go along with this syndrome, is fabulous.  The shared joys of the medical system, inconsiderate doctors and fun medications.  Tips for managing, stories of when we didn't.  Stories of lives outside of illness.  Sharing our histories and finding so many commonalities, none of which our doctors have mentioned.  Hands up who had severe gastro problems when they were a teenager, or mutliple traumas/health issues leading up to the final bomb of Bob.  Hands up who has joint issues.  Hands up..........

For all of us it was a challenge to get there.  Many of us were ill leading up to the day,on the day, and the days after.  Some couldn't make it due to bodies that refused to cooperate.  Some are now in hospital (checking out the male staff off course, can't keep a good gal down).  But I think we would all say it was worth it. 

To all who attended I am so glad I got a chance to meet you all in person.  To all those who couldn't make it on the day I hope we can meet up on another day.  Big love to a strong group of women.

For all Australian's and New Zealanders looking for support come some say hi. FB Group.

Oh I forget to mention, four of us stayed till 6pm!  6PM!!  That's like staying out till 3am on a bender, snogging total strangers, dancing with your undies on head, and eating a dodgy kebab from a mobile vendor at a petrol station, type of night for normal folk!  (God, I miss those days)

WE ROCK!

Cheers
The normal for four hours on one Sunday in January 2011, Michelle :)

In honour of my resurrected lap top I give you, Back in Black, AC/DC.

World Rare Disease Day 28th February 2011: (Re-post and update from 2010)

This is a re-post of a piece I wrote last year 2010, with updated information for the 2011 campaign.   

I've decided to be a bit more serious today.  Shocking I know, but this is a topic that deserves some serious recognition.  Even if you decide not to read this post please click on the link below to find out a little more about Rare Disease Day.

More Information

What is a rare disease?

It is estimated that there are 6000 to 8000 rare diseases in the world today

Characteristics of rare diseases

• Rare diseases are often chronic, progressive, degenerative, and often life-threatening
• Rare diseases are disabling: the quality of life of patients is often compromised by the lack or loss of autonomy
• High level of pain and suffering for the patient and his/her family
• No existing effective cure
• There are between 6000 and 8000 rare diseases
• 75% of rare disease affect children 30% of rare disease patients die before the age of 5
• 80% of rare diseases have identified genetic origins. Other rare diseases are the result of infections (bacterial or viral), allergies and environmental causes, or are degenerative and proliferative.

You have what? How many times have I heard that? For those of you who have read my blog for any length of time, you are well aware that I have demonstrated the intellect of a wet tissue by picking a disorder that no one has ever heard of. And I don't just mean people in the general community, even most doctors haven't heard of it, don't know how to recognise it, how to test for it or how to treat it. Good old Dysautonomia the bane of my existence. There are some more common forms, but I have been stupid enough to pick a rare version of this obscure disorder.  Despite three years of testing I still remain a medical mystery, the proverbial "Horse With No Name".  Collecting new and exciting symptoms and comorbid diseases along the way.

I thought getting in to see the top specialist in the country (or the Wizard of Oz as I like to call him) I would have an answer, but no, that would be too easy.  Instead I got the line you always hope to get from your doctor (yes that's sarcasm):

"I have only seen 1 or 2 people in my entire career with your symptom profile".

Also from my normal cardio:

"you may have Michelle's disease"

Or from my neuro:

"you really are a medical mystery aren't you?"


Then there have been the miscellaneous words like:

"special"

"unique"

"interesting"

I've also been told (repeatedly) that I may have Pure Autonomic Failure (PAF).  What's so rare about that?  Well PAF generally occurs in males over the age of 60, not 36-year-old women.  So there you go.  Not only am I not an 80-year-old woman, I may in fact be a a 65-year-old guy who pees like a horse and can't get it up.  YAY!  Maybe I just need a viagra.  

(2011 has rolled around and one year on PAF is now not thought to be the cause of my ill health.  One crappy disorder ruled out, well at least for this week.  At the moment the doctors are running with a diagnosis of  'WTF?', and thanks to increasing neurological symptoms I am now being sent off to see The Uberneurologist, in the hope he may have a clue as to the underlying cause of my 'Michelle's Disease'  I love his Wikipedia entry (and that he even has a Wikipedia entry):  

 "He is famed amongst his students and colleagues for his excellent impersonations, as well as demonstrations of the different types of movement disorders, especially hemiballismus. It is rumoured the Royal Australasian College of Physicians had to change their assessment method after a poor registrar had to perform a neurology examination in front of him. At the end of the examination, the registrar was presented with evidence based reasoning to why his method for sensory testing was neither sensitive nor specific".

I actually had classes with this Prof when I was doing my doctorate, and his impersonations were rather good.  Here's hoping he can work out what the hell is wrong with my body, or at the very least, entertain me with his impressive impersonations of various celebrities and movement disorders.  Maybe I can request a cogwheeling Meryl Streep or perhaps Gary Busey, as well, Gary Busey).

There are no answers when you are odd.

Will I get better?

"I don't know".

Will these tablets work?

"I don't know".

Where to from here?

"No idea".

So you live your life with the knowledge that you are getting worse and the reality that it doesn't look good.  Times like these tequila sounds good.

I'm not alone in this.  There are many obscure diseases and disorders around, with some that are unique to 1 or 2 people in the world.   Gene deletions or multiplications in a variety of forms.   Some caused by viruses or bacteria or unique environmental contamination.  Idiopathic (doctor speak for I have no idea why you have it) disorders.  Some little quirk of nature that creates a unique illness.

Unfortunately when you have a rare disorder there is little funding for research or treatments.  In many cases the top specialists are flying blind, using trial and error to treat their patients.  When things are rare it is hard to develop a standard treatment program. Governments look at the big picture, so funding goes to those disorders that affect the most people.

Rare diseases don't have the PR machine of other disorders eg Breast Cancer or AIDS. Government programs often don't have categories for these disorders, so patients find it extremely hard to get financial aid or access to rehabilitative programs.

World Rare Disease Awareness Day is a chance to bring attention to these hidden diseases.  To remind people that they exist and to give them a face.

Whether you call it Rare, Special, Unique, or Medical Mystery, it can be a hard road to travel when you have the disease no one has heard of, is difficult to treat, understand or explain.


Cheers
The Freak Michelle :)

Take the camera away from the crazy woman.

What do you do when you have limited oxygen going to your brain?  Why you grab a camera and make a video  of course.  Yes that's right, I decided I was going to bring out my inner Scorsese and record my insanity.  Hell, if the world can be exposed to the abomination otherwise known as Gigli, I can definitely have a crack at movie making.  So here it is.  I give you an insight into the vagueness, otherwise known as Bob plus two weeks of added pestilence.  Somehow, I don't think Hollywood will be calling anytime soon.



Cheers
Michelle :)

Pukefest 2011: The most craptastic event of the year.

Well it's on once more.  Yes that's right.  Bob and Jeff have been hard at work getting this project back off the ground.  I was hoping it was canceled this year, but no, it was not to be.  Pukefest  is back, as was evidenced by the big bag of carrots I had to squish down the shower drain with my big toe this morning.

(Every event needs a t-shirt. 

Especially when it has a unicorn with rainbow coloured puke.)

(Are 'carrot bags' an international phenomenon or are they purely Australian, like Vegemite?  I don't think Oprah discussed it on her recent tour, and given she was impressed by fornicating koalas, I'm pretty sure she's the kind of gal who'd be amused by, and would discuss, 'carrot bags'.  For those unfamiliar with the term, every person has a bag somewhere deep inside their bodies that is filled with a never ending supply of carrots.   Even if you haven't eaten a carrot for two years, when you puke, you will expel a bags worth of little orange carrot pieces, hence the existence of a 'carrot bag'.  Come on international readers, I need an answer.  These are the questions that consume me in my post puke haze.  And before you ask I already know that the meaning of life, the universe and everything, is 42, so I am down to pondering the big issues, such as the epidemiology of carrot bags). 

After a very pleasant two months of no nausea or puking post-angioplasty, it's back.  I sort of feel like the morning was was all very "Here's Johnny", except instead of an axe wielding Jack Nicholson, it was my breakfast saying an insane hello.  All this was accompanied by a rather elegant fall from my shower chair.  Naked, pasty, marshmallow body flailing under the falling water, landing legs akimbo, twisted like a pretzel, with a sound akin to a dead squid being slapped on the table at a fish market.  All accompanied be a lovely rendition of, "FRAK!* Frak me. Owwwww.  Frakking stupid shower chair.  FRAK! FRAK! FRAK! Owww. Fraking universe. Frakking useless body.  FRAKKKKKKKKKK........"  Halcyon days my friends.  Halcyon days.

YAY.  WOO BLOODY HOO!  Let me do the traditional 'Return of the Puke' dance of joy.

Slowly the nausea has been creeping back.  A little bit worse each day.  So slowly that for a while I could dismiss it as, 'it's just something I ate', 'it's just the stupid humidity and heat', 'it's not really coming back'.  You can convince yourself of anything if you say it often enough.  Hell, I still believe that Johny Depp is going to turn up n my doorstep offering to give me a back rub any day now.  Not delusional in the slightest, right?

I do wonder what this all means for Jeff, especially as my headaches have also been returning bit by bit.  I'm still not back to the soul crushing, insanity inducing migraines of old, but it is getting worse.  I've had to go out and buy my first lot of poppy derived drugs since my angioplasty, which is rather depressing.   I have a feeling that it all means that Jeff has once more turned my jugular into a dodgy rat infested squat. 

I knew his return was a risk, especially given his fractious nature and resistance during the procedure.  Many others who have the procedure have to have it done again as the veins re-stenose.  My bestie who put me onto the whole CCSVI idea has had it done three times now, so I'm not overly shocked that it may have collapsed again.

Not sure how I feel about it all or what I'll do.  Is two months nausea and migraine free worth the less than pleasant nature of the procedure or the stupidly long time it took me to recover?  I'm still tossing that up.  I have enough medical appointments on the cards as is, so I'm not sure if I want to add in another trip to the thumping tube of death, or The Balloonman at this stage.  If the 'two months' was instead 'two years' I may be more inclined to go back for round two.  If I hit frequent migraines again then maybe.  At present it's all very grey.

For those who live with nausea/puking everyday, you'll know how precious those two months of freedom were.  I have had nausea 24 hours a day, 7days a week since 2006.  Prior to the angioplasty I had not had even a single day's break.  The only thing that varied was the degree.  Was a I slightly nauseous, very nauseous, swallowing down mouthfuls of vomit, or riding the porcelain bus for hours on end.  It was like someone had snuck into my room in the middle of the night and flicked a switch in my body to the 'PUKE ON' position and it stuck.  So two months free has been like winning the lottery.

It's hard to explain what it's like to someone who is rarely ill.  It doesn't get better and you never get used to it.  It's the one symptom I've never learnt to tolerate.  The overall malaise, yes.  The feeling of dizziness every time I stand, yes.  The need to wear a bikini in Winter, yes.  A myriad of other symptoms, yes.  But not the nausea and puking.  It is continually foul and at times rather distressing.  Not to mention the cramp it puts on my social life and potential outings.

To give you an idea.  I went to the supermarket the other day with Mr Grumpy and half way through I thought I was going to throw up next to the bin bags and birthday candles. It was an overwhelming feeling.  The whole body stuff is horrible in itself, but the idea of throwing up in public, the hassle, the people watching, the poor staff having to clean it up, the fact you know you have no control over your body, that all goes through your mind and leaves you rather stressed and anxious.  I managed to get to the disgusting public loos to dry retch and had the joy of swallowing down mouthfuls of vomit on the car ride home.  You don't get used to that.  It never gets better, or easier to deal with, and there is not much in the way of respite.

I can prepare as best as possible, ie I always carry puke bags (see pics below).  I can tell myself it's out of my control.  It's part of Bob.  I can give myself pep talks and shout out positive affirmations till the cows come home, but in reality it sucks.  And each time it's simply 'Craptastic' (thanks Miranda for my new favourite descriptor).

(The cartoon of someone puking makes it all cute and fun right?  

Personally I think the addition of my pink sparkly feather boa really makes it special)

(Who thought it was a good idea to put cartoons on the bag?  

Who has the time, or inclination, to look at witty cartoons whilst they are blowing chinks?)

(Okay, I do like this one.  

There's nothing like a little cartoon puker to sum up the joys of a technicolour yawn).

So yes folks, Kermit was right, it really isn't easy being green.

Pukefest 2011 is truly the most craptastic event of the year.

The bleech Michelle

* Yes I am a sad geek.  The origins of 'frak'.

At least Pukefest 2011 does have a funky little theme song.  Beck, Nausea.

We can rebuild him.

Some of you may have noticed that I have been a tad slack on the blogging front of late.  Whilst most of that has been due to general apathy and a decided lack of work ethic, most of it has been due to the demise of my beloved laptop.  He has had many ups and downs over the last few year, but things have taken a turn for the worst.  Mr Grumpy feels he may be able to resuscitate him and new parts have been ordered from the Hong Kong Univeristy Laptop Hospital.  So I am anxiously waiting, crossing various body parts and downing a wine or two to ease my nerves, all in the hope that he may be cured.

At present he sits in pieces on the table in my loungeroom, collecting dust and dog hair.  I can't even take a photo and put it on, as I am stuck using eldest monkey boy's computer and am too scared to touch the manky socks, fetid underwear and musty cricket box that cover the hardrive.  I am reduced to reappropraiting someone elses photo of a deceased lap top that looks remarkably like my own (though thankfully I don't have the classic tartin teenage boy doona cover).

Given that the monkey boy's bedroom carries the odour of sweat, liquidising food, fart and other personal activities that tend to overly occupy the mind of a highly hormal teenage boy, I am loathe to enter unless it's a matter of life or death.  Add in that I have been feeling like death only slightly warmed up, and blogging has not exactly been up ther on my to do list.

So things may be a little quiet here until either Mr Grumpy does his House impersonaltion and Hal has been cured, or in the event of his demise, I can persuade him that a new lap top is necessary to my very survival, or at least sanity.

Please say a special prayer to the God of laptops that he may soon be restored to health. 

Cheers
The very worried  Michelle :)