Leap of faith

(photo)

Long time readers will already have a far too intimate knowledge of my bowel habits.  I don't shy away from the less glamorous side of living with Bob.  And, lets face it, we've all been there at some point. Whether it's related to a chronic illness, a dodgy late night kebab, a stomach flu, or a trip to foreign lands (Bali Belly, Montezuma's Revenge), few are those who have not experienced the joy that is a disgruntled gastrointestinal tract.

I have been living with a permanent burning ring of fire since the beginning of August. And apparently supplying my offspring with endless comedic moments. My youngest will periodically sneak up behind me and play Johnny Cash's famous song on his ipod. Whilst simultaneously peeing himself laughing.  Because mum's chronic gastro issues are simply hilarious (or 'hil.hairy.arse' as we tend to say in our classy household).  Admittedly we, as responsible parents, played this same song for him when he was being 'cleansed' for his gastro scopes earlier in the year. So really I only have myself to blame. And, yes I am up for Parent of the Year.

Last weekend a trip to my GP reached a depressing low.  Bulk prescription for GastroStop.  Fanfrickentastic.  Because that's just what every 38-year-old woman wants to buy at the chemist.  Or even better, send her long suffering husband out to purchase on her behalf. Mind you he has carried a 4litre bottle of my wee to the local pathology lab, so really purchasing bulk stool hardening pills is a cake walk in comparison. I wonder if he thought he'd be undertaking these kind of tasks for me when he agreed to the "for better or worse" line on our wedding day. Love is a beautiful thing, no?

My next appointment to see Gastro Guy is not until the end of November.  (Is it sad that every time I say 'Gastro Guy', I envision him as some sort of comic book hero.  I can see the tagline now, "Villains tremble when Gatsro Guy produces his latex gloves, SCHNAP!".  Dear lord, I really need to get out more). I have not been looking forward to this delay as it means continuing imprisonment in my ever shrinking four walls.

After leaving a comment/whinge/woeisme/sookylalapants rant on a forum, I was contacted by a fellow Bobette in the same rectally-challenged position as myself.  She suggested that I try H1 and H2 antihistamines (often used for those who have Mast Cell Activation Disorder, MCAD, a common comorbidity in Bob) as they had worked well to control her own rear firehose.   Normally I double check this type of information with my GP. But given they are over the counter meds, so no prescription required, and I am over forking out my life savings for the pleasure of waiting an hour in a germ filled waiting room, followed by the usual, trial and error, medical guinea pig answer I normally get, I thought bugger it.  So once Mr Grumpy was sent off to the local chemist to purchase yet more pills.

To say I am surprised by the result would be an understatement.  From the first day of taking the combined H1 and H2s I have gone from double digit, bolting/stumbling/praying, to the loo, to 3-4 times a day.  WHOA! I here you say.  You're talking crazy, Crazy Lady! But it's true. These two little tabs have reduced my vacating substantially, and my butthole is oh so grateful.  Even the rainforests of the world have breathed a collective sigh of relief to know that their brethren will no longer be slaughtered in record numbers to meet my excessive tissue consumption.

In the spirit of full disclosure, I have to say it's not a complete answer.  I am still nauseous, consistency has changed little, and my stomach continues to speak in tongues at 80 decibels.  But frequency has reduced substantially.  And that has given me some of my life back.  Did you know that if you aren't crapping yourself stupid every three seconds you can pot a plant, and wait for it....walk up a flight of stairs.  Whoa, I know I can't believe it either.  As, I said to the lovely Linda, who put me onto this idea, I'm pretty sure I owe her my first born, or at least a kidney.

So the plan is to trial it for two weeks, stop it for a week, and see what happens.  I'll also be double checking with Gastro Guy, when I see him, about the safety of long term use.  As frankly, I hardly need to add another problem to my list, especially one that could be avoided.

So for now I am simply rejoicing in my reduced bathroom time.  Laughing at the irony that my newly reduced frequency, would still be a cause for concern for regular folk. Amazing what you can get used to. I may even get crazy and walk up a flight of stairs again. Or go all out, and walk to the letterbox.  Oh the possibilities.  I may even go all Braveheart, and scream "FREEDOM", from my bedroom window.  Its not like my neighbours think I'm normal anyway.

The world is my oyster dear readers. The world is my oyster.

Michelle :)
I'm back baby.

Sticks and Stones: A response to the New York Times Article, "Ailment Can Steal Youth From the Young"

I tend to shy away from political discussions on this blog.  It's been a very deliberate decision on my part. Privately I have certain political beliefs, and there are issues which are dear to my heart.  But this blog was created as an outlet to process the day-to-day struggles of living with chronic illness.  My own personal therapist in the shape of a keyboard and 'publish post' button.  But of late I have become increasingly frustrated by the portrayal of Dysautonomia in the both the media and peer reviewed medical journals.

A recent article in The New York Times, was heralded as a giant step forward in raising Dysautonomia awareness. A relatively unknown and under recognised disorder, Dysautonomia diagnosis is notoriously difficult, and treatment defined by trial and error. Unfortunately, what began as a great opportunity, has upset many patients. The last few lines in particular,

"Don't let the disease rule you.," Dr. Fischer emphasized. "The messages of how you feel are not reliable. You have to make your mind rule your body".

are as nails on a chalkboard for many of those who live everyday with Dysautonomia.

I will give Dr. Fischer the benefit of the doubt, and believe that his overall intention was to suggest we try to participate in life as much as possible. A course of action known to promote mental health and improve coping mechanisms. Managing stress is important, particularly when your autonomic nervous system (ANS) is already malfunctioning, as it is known that increased stress equals increased symptom severity. But the idea of the mind ruling the body, in a physical disease, simply perpetuates the myth that a) Dysautonomia has a strong psychological component and b) that all we need is a positive attitude. Can I control my blood pressure and heart rate by simply willing it? No. Though I, like many other patients, truly wish I could. But the question arises, would Dr. Fischer say the say such a thing to a person with diabetes or Parkinson's disease? I think not.

This comment comes on top of The Grinch Syndrome controversy, following a publication by prominent researcher, Dr Levine. Dr Levine concluded that all cases of Postural Orthostatic Tachycardia syndrome (POTS, a common form of Dysautonomia) were due to deconditioning and small heart size. His solution, all patients need to follow his exercise program. Those who didn't recover simply didn't exercise enough. All accompanied by the proclamation that he had found a 'Cure'. Whilst the methodological failings of the study, including its overreaching conclusions, are well known, this study persists thanks to Dr Levine's prominent reputation in the field, including his work with NASA. Unfortunately, this study is quoted by many well meaning medical professionals, despite many patients being highly physically active prior to illness and continuing to have normal heart size, long after diagnosis. (This is not negating that exercise is a vital part of the overall treatment of Dysautonomia. But it is not a 'cure' for all, and must be tailored to each individual patient).

It would seem that these practitioners, despite their best intentions, have lost sight of the patients they are supposed to be treating. Naming a disorder after a Dr Seuss character is not cute, it is patronising. Not only that, but this research negates the fact that there are multiple well-recognised forms of POTS and Dysautonomia, all of which have different underlying pathologies. There is not a one sized-fits all diagnosis, or treatment.

Whilst the physiological symptoms of Dysautonomia are difficult to live with, it is the way these impact on a patient's day-to-day life that can be most challenging. Many patients have had, and continue to have, a difficult and demoralising experience. Patients are told that much of what they are experiencing is psychological in nature and continuing illness reflects low motivation. This can be devastating.

Both of these doctors know the stigma attached to Dysautonomia. Many patients have fought for years to finally find the correct diagnosis. During that time they have been told "that it's all in your head", "it's anxiety", or "it's depression". There are helpful comments from family and friends, and not a few medical practitioners, that we "simply need to get out more", "be positive", "exercise", "eat healthy", the list goes on and on. These experiences leave a mark on those who have been through them. For many patients these remarks persist long after diagnosis.

Dismissal and disbelief are part and parcel of Dysautonomia. Heard frequently enough, patients begin to internalise those feelings, even when they know the truth. Patients frequently experience an overwhelming pressure to prove their illness, both to those in their life, and medical professionals. As such, the outrage of patients when comments such as this are published, is understandable.

I know from personal experience, that there are many doctors who are quick to dismiss when they are unable to find a cause for reported symptoms. After describing my symptoms to one General Physician, I was told, “when a woman your age presents with these symptoms it is always in her head”. Thankfully, with a background in Neuropsychology, I knew he had not followed any accepted testing methodology and therefore drew erroneous conclusions. Notwithstanding, I was left deeply upset. That distress turned to anger which spurred me to search further and finally find a doctor who could provide me with a diagnosis that fit the symptoms, and push for appropriate treatments. But I often wonder how many patients simply accept such a diagnosis and blame themselves when they don't get better.

I can push myself to make an appointment in the city, 45 minutes away. But not without extensive planning and preparation. By the time I am home I am exhausted and highly symptomatic. Quality of life becomes a moot point. Life is defined by periods of increased symptomatology punctuated by pushing yourself beyond your limits for a certain event. This hardly reflects an effective treatment option.

Social outings and participation, are vital to mental well-being. It is easy to become so overwhelmed by illness that we catastrophise, and believe we are unable to do anything. Simply leaving the house and all the potential situations that may occur (eg, fainting or vomiting in public) becomes an occasion for increased anxiety. Few patients would deny this. However, in reality a simple outing, for example, going to a cafe, can lead to an exacerbation of symptoms post-event. For many patients, this in turn leads to a lengthy recovery period often measured in days, and for some, weeks.

In psychology there is a phenomenon known as the Primacy and Recency Effect. This theory tells us that people recall the first and last things they are told, with the intervening information recalled with less clarity (regardless of how informative it may be). In the case of this article, most would take away that the patient discussed was very ill, but the fundamental answer to treatment is related to attitude. Which only serves to perpetuate the myth of a psychiatric aetiology. We are also drawn to personally salient information. For patients who have struggled for recognition this conclusion sums up the struggle they have faced, and for many, continue to face. For those who doubt the legitimacy of the disorder, it confirms their pre-existing opinions. Especially coming from an expert in the field.

I am sure that Dr Fischer did not intend to cause harm or distress by his statements. And it may be a question of simply how the journalist chose to frame the discussion. But it behoves medical professionals to stop simplifying complex disorders. Especially, when most will admit that little is known about the mechanisms of the disorder and the ANS as a whole. Additionally, this article only addresses POTS in an adolescent, with a specific identifiable aetiology. Even less is known about those in the older age groups. Questions of treatment, recovery or prognosis are often left unanswered as little to no data exists.

Patients are vulnerable and frequently unable to advocate for themselves. As such we rely on those who are supposed to provide us care, to advocate on our behalf. And that includes thinking about the potential impact of the language they use both in the public domain and medical journals.

Sadly, whilst much of this article is informative and aides in increasing awareness, this comment from a prominent specialist in the field merely serves to perpetuate unhelpful myths. Dysautonomia is a highly complex disorder, varying in aetiology, treatment, severity and impact on functioning. It has clear, measurable physiological and pathological markers. Its impact on patients and their families can be devastating. We need an advocate, not minimisation and simplification. And "make your mind rule your body" does not fulfil that brief. The medical covenant of "First do no harm", is thought a central tenant of medical practise. It is time to apply this practice not only in the treatment of patients in the doctors' rooms, but also the way disorders are discussed in the media.

Michelle

Update: a revised copy of this post was was accepted and published in ABC Ramp Up and arm of the ABC News Network, on 21 Nov 2011.

.....and the horse you rode in on.

Warning: Woe is me post ahead.  May contain TMI, pathetic loads of self-pity, a wee bit of incoherent ranting, and sailoresque swearing.

Being ill has knobs on.  It really does.  Just when you think you've taken a step forward, you find yourself hugging your porcelain lover or sprawled out on the cold, hair-covered tiles of your bathroom.  It's frustrating beyond belief when you do the old "think positive" trick and your body says "Hell no, crazy woman.  You're my biatch, and you might as well get used to it".

My gastric system is out of control and frankly the last few months have sucked.  All the drugs I take are basically doing bugger all and I often wonder why I persist.  I look back at this depressing, rambling, vlog I did a month ago and realise nothing has really changed.

It's rather confronting to have the truth displayed up there is full pasty colour (and what's with my weirdarse left eye?).  In some ways I am better than when I went into hospital, though I'd be hard pressed to find specifics.  And no amount of positive thinking is going to change the facts.  I can't even get back into the GI specialist until the end of November so I am stuck in a gross no man's land that has left me pretty much housebound and dependent, since August.

Whilst, the physical symptoms that I currently have are quite repulsive and hard to deal with, it's the way they impact on my day-to-day life that is causing me the biggest heartache.  Yes I need to go to the loo a bazillion times a day, that I can sort of deal with, though my butt hole may disagree.  But this one issue impacts on my ability to leave the house.  I have to be sure I am in close proximity to a loo at all times.  When I need to go, I need to go immediately.  There is no choice.  There is no clench your butt cheeks and will your sphincter to stay closed, it's a mad dash to the closest bathroom with a quick prayer to every deity known to man that you'll make it.  I even have an emergency pack in the car, just in case the humiliating and downright disgusting sphincter fail should happen to occur (it hasn't yet, but I will now run around and touch every piece of wood in my house). Yep, I'm living the dream right now.

Then there is the joy of the public loo to contend with.  I don't have time to wait for the key to a public bathroom.  And more importantly, I don't want to have to use the rancid petri dish that is the public toilet. Particularly as the last few months I have come close to passing out each time I go.  Face planting on my own tiles is not great, but doable.  Face planting on a melange of strange short and curlies, and mystery 'deposits', in the unisex loo of the local 7/11 is not high on my 'to do' list.

The logistics are only one fun part of the problems associated with increased gastric symptoms.  Going so frequently, means weight loss, which in turn, means increased Bob symptoms.  I am exhausted.  I have spent more days confined to bed in the last few months than I have in the previous year.  More days where standing becomes a Mission Impossible.  More days where simply showering leads to squishing magic carrots down the shower drain with my big toe, and crawling back to bed.

Some days start relatively okay and I make plans to catch up with friends.  Stupid, delusional woman. But my body is currently balanced on a knife edge and one little thing leads to a big ugly fall.   That one thing could be doing a load of washing.  Daring to sit out in the garden for 10mins.  Or even, the simple act of showering.  Last week I was really looking forward to seeing my best friend, but an hour before she came over I had to cancel.  Of all the friends in my life, she is the one who is never phased by me being sick.  My being KOed on the couch would be okay, we'd still chat and laugh, I'd just be horizontal and vague (not unusual). But on that day I knew I couldn't even do that one simple thing.  And that's what I hate about this whole illness crappola.

I can deal with the physical symptoms.  You get used to managing.  To becoming creative (eg cooking whilst seated).  It's not pleasant, but it's part of the drill.  I look at the scales that class the severity of Bob dependant upon criteria such as heart rate, blood pressure, how long you can stand, and think how inadequate they are.  The severity of Bob and other illnesses is related to how much they impact on my life, not whether my bp drops into my toes when I stand.

I am shat off that I can't drive, that I can't just go for a coffee, or even, sad as it is, do the grocery shopping.  I am peeved that this illness stops me from catching up with a dear friend.  I am crapped off that I can't participate in my family like I want.  I want to punch well-meaning people who tell me to "have hope", 'it'll get better", or "you just need a positive attitude".  I don't want to be 'brave', or an 'inspiration' or all the other words that get tossed around.  Nor do I want the expectations that are attached to such labels. I am neither. Dealing with the hands you are dealt, when you have no choice, isn't 'courageous', it's merely practical. Bare bones, one step in front of the other. Illness is ugly and messy and sometimes you just want to scream. And so I am angry, in ways I can't even articulate, that the small amount of freedom I had prior to August has pretty much evaporated.

Some days, living with Bob is like treading water, maybe if you're lucky a little sculling whilst you float on the surface for a while. Other times it feels like you're drowning under the weight of the emotional, social, and psychological crap that comes along with the diagnosis. I don't want to acknowledge that with no change since August, this may be my new normal. I can't wrap my head around that yet.

So instead I take the oh so mature high road and say to Bob and my gastric system, "Fuck you, and the horse you road in on".

Tomorrow I'll paint on my happy face, fight through my bad attitude, and keep on keeping on. But for today I choose the classic "Pout and Wallow" method of dealing. Oh how proud my old psychologist peers would be.

Michelle

Nothing says I can't wallow and listen to funky 80s dance hits.

Because somedays, it's all about Plastic Bertrand

Well my plans for normal have gone a bit awry.  Bob and my stomach have ganged up to bitch slap me back into submission.  And once more my world consists of pjs, pillows and white tiled ensuites.  Crazy plans of normal have been replaced by harried trips to pharmacies, bulk purchases of air freshener, and, an apparently infinite, bowel of despair.

Times like these, only Plastic Bertrand can truly explain how I feel. (le sigh)



Michelle.

I'm over this sick malarky.

I quit.  Yep that's right, I quit.  I'm over it.  The whole kit and caboodle.  I'm taking my bat and my ball and I'm going home.  I'm outta here baby.  Bob can kiss my ever decreasing arse.

I'm getting a life.  Not that I'm quite sure what that entails.  I may have to Google "getting a life", to see what the answer is.  I do hope it's in dot points as I really can't be arsed reading paragraphs.  A diagram would be nice too, particularly if its of the Venn variety.  And lots of pictures, bright, shiny pictures.  And good tunes.  You can't start on the road to getting a life without a decent soundtrack.

I've realised of late, that I've been sucked back down the Bob rabbit hole.  I'm not even quite sure when it happened, but I'm pretty sure surprise enemas and almost fainting on the loo were involved.   One minute, I had the makings of a life.  Then I looked up from the bathroom floor, and it was Bobtown as far as the eye could see.

The last few months have seen a sharp rise in my decreptitude.  I can admit that now.  Though, my oh so adult fear of "if I say it out loud it will make it true", has gotten in the way.  I am more housebound.  Even short amounts of standing, exercise (and by that I mean walking from the couch to the fridge to grab chocolate), talking, breathing are all exhausting.  My gastric issues are pretty much unchanged.  My ability to drive is now almost non-existent.  I could add in the near permanent pain, head and joint, the constant unrelenting nausea, the increasing weakness, and all the other crap that seems to be piling up.  Frankly, it may be time to simply start stacking my hallways with newspapers and collecting cats.  Because, if one is going to be a shut in, one should do it right.

But I say, "Balls to that!", my friends.  No more.  I'm making my stand.  I'm a gunna get me some normal. even if it kills me, or I end up face planting on an unsuspecting dog.

No more will I be known as Michelle, The Sick. I am going to put on my cape, my Dorothy Shoes, and wear my undies on the outside.  I will become, Michelle, The Slightly Weird But Sort of Normal Woman With A Fondness For Glitter And Zombies.  

Bite me Bob.

My first step is too start a new blog.  Because Eunice (my last remaining brain cell) has nothing else to attend to lately.  And what does a girl with gastric issues blog about?  Why food of course.  It's says, suck it Bob.  Take that, guts.  It also points to my ever increasing insanity.  I may sit on a chair, or the floor, when I cook.  I may burn myself on the stove, or oven, or pot, or....  I may employ the 30sec rule on a way to regular basis.  I may even use my children as slave labour to peel and cut my veg.  But it's still cooking.

It is bare bones at the moment.  Not even a decent header in sight.  I'm not even sure I like the title.  It will be Bob-free.  It'll even be lactose and fructose-free in places.  It is certainly guaranteed to be grammar and spelling-free.

Check it out if you want to be amazed by my culinary delights.  So far I've made, yoghurt, cheese, bread and crumpets.

The Sit Down Cook

(I even take purdy pictures)

But my quest for normality doesn't stop there.  I have plans to put plants in pots.  To break open my dust covered paints and get all arty. I might even go all out and sweep my front steps.  I'm living on the edge baby! The edge of Normaltown.

Michelle :)

Update:  Have changed the name of my food blog to The Sit Down Cook, to reflect the fact that I, like many other Bobettes, can no longer stand to cook.

Apathy

I received a reminder for my now annual breast ultrasound two weeks ago.  For those of you who have read this blog for a while you'll remember that my breasts are demented.  For years now I have been popping out cysts and lumps like a crazy woman.  I had one radiologist tell me my boobs were a garden. I had my GP tell me they are Swiss cheese.  I can feel lumps and bumps.  Big and small.  New and old.

But...

It sits on the table.  Waiting.

I know I have to get it done.
I know I have to become a teaching tool once more at my local radiology office.
I know I have a hope in hell of detecting a new potentially bad lump in a forest full of pretenders.
I know my GP will yell at me yet again for my apathy.

But......

I am over being scanned, poked, probed and examined.
I have had my fill of doctors.
I have had my fill of pills and potions.
I am over being a pharmaceutical guinea pig.
I am over shelling out money hand over fist, for no answers, or solutions.
I have had my fill of bad news.
I have had my fill of no news.
I have had my fill of being unique, unusual, weird, strange, and all the other descriptives that come my way.
I am over being told "I have no idea", "there is nothing I can do", "I've never seen that".

I am over new diagnoses.
I am over no diagnoses 
I am over new symptoms.
I am over the word 'idiopathic', the fall back for doctors who have given up.

I am over a diary filled with nothing but doctors appointments.

I am tired.

I need a break.

But....

I will call the radiology office.
I will make the appointment.
I will call my GP.
And, I will make that appointment.
And I will take my medicine.

Because...

Just in case.
You never know.
Maybe this time.
What if?

And then apathy wins.
But I wont.

(find out more here)

*Update: It can be hard to maintain the medical momentum when you are chronically ill.  But sometimes you just have to suck it up and do it. So I made the call, and am now booked in to be scanned.  

Alas I have no junk in my trunk, nor no lovely lady lumps.

Oh Black Eyed Peas, how I wish I could sing your pithy song with you:

What you gon' do with all that junk?
All that junk inside your trunk?
I'ma get, get, get, get, you drunk,
Get you love drunk off my hump.
My hump, my hump, my hump, my hump, my hump,
My hump, my hump, my hump, my lovely little lumps (Check it out)

But I fear my days of a junk filled trunk are over. (sigh) Two months out of hospital and my trunk is still as flat as a teenage boy's.  Actually, I'm sad to say, I also appear to have acquired the chest of a teenage boy.  20 years later and my high school nickname of 'Sufboard' is apt once more.  Oh miniscule mammaries, our glory days were so short.  Our cup no longer runneth over, it is, I fear, empty. I am officially sans, humps, lumps and junk.

My abnormally junkless trunk is quite the conversation starter:

"You've got no bum!", from my tactful cardiologist
"God. There's nothing there!", from a caring nurse.
"Wow it's really gone", following a sad attempted arse grab from Mr Grumpy.
"It's gone!", thank you sweet physio.

And then, there was the photo.  Look away now, for fear of being overcome with rennui.

My junkless trunk displayed in all it's full length glory (ironically in the kitchen, and about a kilo heavier than present).  What is left of my trunk was reduced to a sobbing pool of flat melancholy after this unmistakable visual proof.  Poor, sad, little trunk.

Alas, I just can't seem to gain back the weight I've lost over the last few months.  And I've tried.  I really have.  I've followed the dietician's instructions.  I tried the supplement drinks, with their vomit inducing thick texture.  (Fake strawberry flavour is an abomination, and the creator should have their testicles repeatedly waxed by an inept, burly guy named Tiny, who sweats like he's coming off a three day bender).  But they just made me ill and run to the loo.  I was perplexed, as was my dietitian.  Then a timely little article came up on a forum, and I had a moment of enlightenment.  Over 50% of people who consume hospital grade meal replacement/supplements for even a couple of weeks, end up with diarrhoea as they are high in FODMAPs.  Brilliant.  Because that's just what I need.  Ah Universe, you are a cruel and heartless cow.

I am now on a high calorie, dietician recommended, diet.  Whereby I must eat ice-cream and other high calorie foods. And if I must, I must.  Bring on the pizza.  Bring on the chocolate.  Bring on the cakes.  Smoother me in your delightful, health improving, sugar and fat laden, bounty.  I will take my medicine.  I will even purchase a bigger dosette box.  For I fear that no matter how I fold that piece of medicinal cheesy crust meatlovers, it's not going to fit in that tiny plastic hole.  And still I cannot gain.

It seems I must resign myself to my new 'svelte' body.  For my guts decided to make itself comfortable and I continue to consume a rainforest worth of toilet paper each day.  A quick check of the scales before typing tells me I have reached the stellar weight of 53kgs.  Woo Hoo!  I refuse to believe that my gain could really be the result of the litre of water I just downed.  Or that I will most likely pee out that extra weight in the next half hour.  As far as my delusional mind is concerned I have gained, and I'm sticking with that.  Reality has no place in my current health regimen.

Maybe this is all a case of, "careful what you wish for".  For the past few years I have lamented my weight gain thanks to medications, sloth-like metabolism, and lack of exercise.  I had cursed Bob for my Texas-sized muffin top and the transformation of my saddlebags into turn of the century travelling trunks.  And my luscious love handles? Well they clearly indicated that I had a lot of love to give.  And now?  Now my body looks like it belongs in The Corpse Bride. Skeletal, pasty, mottled-skin and poking bones.  Sexy No?

Now whilst a strategically placed push up bra may help to give me the illusion of lovely lady lumps in the front, my trunk remains problematic, or is it?  Did you know there are multiple sites dedicated to butt enhancers?  The things you learn whilst surfing the internet at 3am.  Who says insomnia is all bad?  My personal favourite is this one.  How can you not love a site whose tagline is "Our duty is your booty!".  Little did I know I was suffering from "flat butt syndrome".  "OMG!"  I hear you cry.  I know, I was shocked too.  Must make sure to add that to my list of diagnoses.  Thankfully, treatment is available and I can be "Instantly transform [my] boyish figure into a feminine body".  Go science!

Now to work out the look I'm going for.  Should I go for a Brazillian or Silicon Pop Up?

(image from here)

So, excuse me whilst I grab my bucket of cookies and cream and chug down a super, triple shot mocha latte with extra cream and shot of lard.  Now, do I want my trunk to be  "Unbuttleivable", or "Buttoholic"?  Decisions, decisions.

Cheers
Michelle:)

Taste of Melbourne 2011

Well after a rather crappy couple of months I finally made it out of the house this past weekend.  Me? Manage to get out of the house?  I know I can't quite believe it either.  But somehow between more loo breaks than I can count and a little lie down on the bathroom tiles, I managed to brush my hair, frock up and head out of the house with Mr Grumpy.

I was lucky enough to win a double pass to this years Taste of Melbourne, thanks to a fabulous local food blogger Jeroxie.  Who couldn't love a blogger who has a recipe for Ox cheek stew, a fav from my childood? A fool with the tastebuds of a rock that's who.  Not only are there recipes for ox, but goat and rabbit.  Be still my heart.  Mind you trying to get my local butcher to source me goat or rabbit is proving a bit of a mission impossible.  Seems strange given that as a child growing up in the country, rabbit, ox, duck and the like were all common place.  I still have fond memories of my Nanna's braised rabbit, complete with errant buckshot.  Mind you, I figure given the price my butcher quoted me for a single rabbit, they probably come buckshot free, and coated in diamonds.

And yes, I can see the irony in winning tickets to a food festival given my recent, and continuing, gastric adventures.  But I've always been a bit of a foodie and love trying and cooking new foods.  And there was no way I was letting my recalcitrant gut, get in the way of free samples!  Even having  fructose mal-absorption and lactose intolerance, I still found a tonne of yummy foods.  And what I couldn't sample Mr Grumpy was willing to sample on my behalf.

I even managed to swallow my pride and hire a wheelchair.  Anyone who has read my blog for any length of time will know how much this pains me.  I would rather listen to Snookie and The Situation debate the political situation in Libya, whilst having someone slowly pull bandaides off my hairy legs (hey, don't judge me and my hirsute ways.  It's been Winter here in Australia, the time when razors and wax strips go into hibernation. It's eco-friendly insulation), than use a wheelchair.   Unfortunately, my current level of decreptitude didn't give me much a choice, and I sucked it up so I could get out of these ever shrinking four walls and head into the city.  Mr Grumpy even agreed to push me around.  I did see my life flash before me at one point where Mr Grumpy's eagerness to push me around nearly ended up with me face planting.  For those in Melbourne, you should know that the Melbourne Museum has free hire of wheelchairs and a reciprocal agreement with the Royal Exhibition Building, where Taste of Melbourne was held.  You can't book them, as they are on a first come, first served basis, but there are plenty and the staff at the cloakroom are lovely.

So much to see, and sample.

Proof that I sucked it up and grabbed a wheelchair, and yes that is a lovely row of handmade chocolates.  

I may have purchased one, or two or twelve.

Hello my pretties.

Proof that I was meant to come to Taste of Melbourne.

For my salt loving brethren here is a pyramid of bliss, curtosy of Murray River Salt.  

Further proof that I was meant to go to this festival.

One of the beautiful domes at the Royal Exhibition Building.  

Every time I go I am amazed at how gorgeous it is.

Mmmmmmm Macaroons.

The best Gluten-free Brownie I have ever had.  If heaven had a taste, this would be it.

Tea anyone?   

Love this building.

Mr Grumpy, sampling on my behalf.  Thanks Honey for taking one for the team.

Now this is how one should eat chocolate.

Finally had the chance to taste elderflower.  It's something I've always wanted to taste but didn't think was available here in Australia.  Maybe it's too many years of watching UK programs like River Cottage and Hugh Fearnley-Whittingstall's hedge brews, but elderflower has been on my "to try" list for some time.  It tasted like a cider with a hint of something floral, strange but quite nice.  The elderberry was by far my favourite.  Thick and dark like treacle, with a taste similar to blood plums.  I now have bottles of both waiting for me to find the perfect dessert to go with them.

I am still in recovery mode from the day, who knew it could be so exhausting being wheeled around.

Big thanks to Jeroxie and Taste of Melbourne for making it possible.

Oh and proof I was inspired and actually using all my purchases, well except all the chocolates and macaroons which are long gone.

Roasted tomatoes (tomatoes, fresh oregano from my garden, salt, pepper, minced garlic, chilli flakes, splash of olive oil).  Topped with Yarra Valley Dairy's Cardi goats cheese (their Persian Fetta is also delicious), a swirl of Biogrape Red Wine Jus, and Myrtlevale Olives, cold pressed corregiola olive oil.  All on a slice of my homemade spelt and kamut sourdough.  Yummo.

Mmmmm.  May have to whip up some more as my mouth is watering just thinking about it.

Cheers
Michelle :)

And to celebrate finally getting out of the house, I give you classic Australian rockers Boom Crash Opera.

Invisible Illness Week 2011

This week marks the start of Invisible Illness Awareness Week (okay, so it's more of a US initiative, but here in Australia we are bit lacking in the PR side of things, so I thought I'd jump on the bandwagon to promote a bit of awareness in the Land Down Under).

As someone living with a nice little collection of invisible illnesses I know the challenges that can arise.

For those new to the blog, I'm 5yrs into living with Dysautonomia, or Bob as I like to call it.  Well five official years, if I look back at my photos pre-2006 I have a lot of sexy purple leg shots.  And if I look back over my life I have had periodic symptoms since my teenage years.

I am also living with:
Progressive neuropathy,
Degenerative disc disease,
A mutant jugular vein called Jeff,
Boobs that persist in growing in places there not supposed to, and popping out painful cysts and fibroadenomas like randy rabbits.
And if I ever pull my finger out to get an official diagnosis, Ehler's Danlos Syndrome.
To top it off I now have my delinquent gut, for which I am still looking for answers.

In other words, I have the Ford Pinto of bodies.

Despite my delightful and ever increasing list, I still look pretty healthy on the outside.  Okay not so much in the last two months since my dodgy gastric system has taken up residence.  As Mr G says, "well at least you look sick now".  Thanks honey.  Always there for the moral support.  But in general I can put on the spackfiller, whip on some lippy, and look relatively normal.  This can make my health issues seem rather confusing for others.

Apparently, I simply "don't look sick".  I also don't act like a sick person, whatever that means.  Foiled once more by my own Oscar worthy acting abilities.  The logical conclusion to this being, people think you're either not sick, or not as sick as you claim.  Which is understandable, right?  Because all real illnesses are visible.  You know, like Diabetes or heart disease.  Because their years of no medical training, makes them experts at spotting and diagnosing illness. (Okay, I may still be a little bitter about a few people).

It doesn't help that I was stupid enough to pick the obscure disorders.  The kind that no one, not even most doctors, have heard of.  And if it's not enough that they are obscure, they are also complex.  All of which adds up to yet another layer of invisibility to contend with.

What's a girl to do?

Should I highlight the black circles under my eyes?
Should I lie dramatically on a couch and moan?
Should I "woe is me" at every opportunity?

Would that make my invisible illnesses more real?

Maybe for other people, but not for me.

I live with it everyday.  They are very real to me.

It is real when I can't stand in the morning because my bp is so low.
It is real when I can't string a sentence together.
It is real when I can't open my eyes due to the excruciating pain in my head.
It is real when I have to lie on the tiles in my bathroom following a shower.
It is real when I can't feel when I've cut my legs when shaving, or burn my hands when cooking.
It is real when I have to hold my hips in with my hands when exercising.
It is real when I am bent over the toilet in a public bathroom because the nausea is so bad.
It is real when I lie in bed unable to sleep because my feet are burning to the point where I cry.
It is real when I pop a disc in my back because I have a scan at my local hospital.
It is real when I can't coordinate my legs to walk properly.
It is real when I grab the wall or have to stick my head between my legs because I simply went to the loo.
It is real when I can't get cool in the middle of Winter and must put on an airconditioner.
It is real when I can't exercise because it causes my bp to drop.
It is real when I can't feel the pedals in the car through my shoes.

It is real to me in a million other ways that I could list, but that most people will never see, or understand.

Disbelief and dismissal cut deep.  They attack the spirit.  Heard enough times, they are internalised until the criticism comes from within as readily as it comes from without.

It must be in my head.
I must try harder.
It is my fault.
There are others worse off than me.
I am not worthy.

Acknowledgement isn't about pity, it's about compassion.

Just because you can't see someones suffering, doesn't mean it doesn't exist.
Just because you don't understand, doesn't make it less real.

Compassion costs nothing.
But is priceless to those who receive.
And is a gift to those who choose to give.

Michelle :)

Here's a little post I wrote a couple of years ago.
Dysautonomia: Invisible Illness My Arse.

I'm a Salty Wench

Bob continues to go all WWF on my body.  Brain cells have left the building, along with my bp, pulse pressure, and the ability to ablute like a normal person.  So I thought I'd put up the post I initially tried to schedule pre-hospital admission.  Obviously my brain was firing on all cylinders that day as it failed to post. 

One of the strangest parts of having Bob, is our need for salt.  People look at you crazy when you say you have a health condition where you must have salt.  And not just a little salt.  As my cardiologist says, "if you can still taste your food, you're not having enough salt".  Whilst the rest of the population is doing everything in their power to decrease their salt intake to aid vascular health, we Bobettes are mugging cows for their salt licks.

There is only one form of Bob that should avoid salt, Hyperadrenergic POTS, but the rest of us need to live on a saltpan.  I still remember the look on the poor OT's face when I was in hospital and she handed me the stock standard cardiac health book, with it's anti-salt campaign.  It's hard for others to understand.  When I tell my GP that I often just have a teaspoon of salt in the morning she looks horrified.  Yes GP I am living in crazy town and it's full of salt loving freaks.

One of my medications even requires salt to work.  It's on the little information sheet that comes with the bottle.  I only scanned the sheet so I'm not sure if it mentioned tequila and lemon as an additional requirement, but it only seems logical that they'd also make it work better.

I collect salt sachets everywhere I go.  A bowl of sachets on a shop counter really is an invitation to take what you need.  Just because my need is larger than most, shouldn't stop me from clearing them out.  And really I'm performing a public service by removing the salty temptation from others who need to lead a salt-free life.  It's all very Mother Teresa.

I carry a stash of salt sachets everywhere these days.  In my purse, in my handbag, in the glovebox of the car.  You just never know when you're going to need that salt hit to get your bp up.  I don't advise keeping the sachets in your coin purse though.  I know from my own early rookie mistake, that the gross metallic taste can permeate those little paper packages and make you gag.

(My purse salt sachet stash)

I have a good knowledge of emergency salt sources for the times where my brain fog has let me leave the house without a single grain.  Burger Rings (1140mg per 100gm) are one of the best sources.  They have the added bonus of making me feel like I'm 12 again, especially when I wear them as rings on my fingers.  And I like to think of a packet of Thins (596mg per 100gms) as purely medicinal.   Not to mention my encyclopaedic knowledge of the most salty foods eg fetta and miso.  And the joy of brine.  Mmmmm......brine.  How I love thee.

(And now the Lindt gods have smiled on me and combined chocolate with salty goodness.  

This can now qualify as purely medicinal.  Thank you.  Oh thank you.)

I make my own flavoured salts which I use at home.  Herbed salts are what I mostly make, but you can add pretty much anything.  And it's so easy that you can make it with complete success in the midst of a shocker of a brain fog.

All you need is:

• An old coffee grinder.  You really need to dedicate this grinder to future salt production unless you like your caffeine with a salty/herby/spicey aftertaste.  I found this out the hard way after a less than pleasant mug of salty, fennel seed coffee.
• Good quality salt.  When I can afford it I buy a good quality sea salt flake or a Murray River Pink Salt.  Ironic that the area of my youth that was decimated by salinity, now produces tasty salt to sprinkle on my fries. 
• Herbs dried or fresh. My favourite is rosemary, but thyme is a close second. You can use a softer leaf herb such as basil or oregano but the moisture content can make it a bit too moist if you're not careful.
• Spices.  Fennel seed is great.  As are everything from chilli flakes to cumin.  And Szechuan pepper is yummo on calamari.
• Citrus rind.  Any citrus will work, though I have a preference for lemons or Tahitian limes.  Use a microplane (which maybe my favourite kitchen gadget ever) to collect the rind.

I don't really measure quantities as I am more of a measure by sight and feel, cook.  But if I had to guess it's be about:

• 1/3 to 1/2 cup salt

then depending on what flavour you want, add

• 1tbsp fresh herbs
• 1 tsp spice/dried herbs
• 1/2tbsp citrus rind

Then it's simply mix it all together in the coffee grinder.  It also lasts forever thanks to salt's natural preservative qualities.  

My favourite is rosemary and lemon salt.  It's like a little taste of heaven when sprinkled on some home baked potato chips ('fries' for my Nth American friends).

I do have an emergency commercial rosemary sea salt flake by Falksalt.  Which looks a bit like fish food but tastes divine. Must be my Swedish roots that make me love it so.  Kind of why I like smorgasboards, gravad lax, ABBA, and Greta Garbo movies.

(I really want these salt and pepper shakers from here)

Cheers
Michelle :)

And what would any discussion about salt be without a classic Salt-N-Pepa tune.