Monday 20 September 2010

Et tu, Jugular?

News Flash:  Michelle's body has another mutant part.

I know, I know.  It's not really a news flash.  I don't even know why I'm surprised.  Even an idiot could see it coming.  Well any idiot other than me, that is.  Now before any of you, my lovely readers, decides to jump to my defence with cries of, "But Michelle, you're a brilliant and gorgeous woman, with killer thighs" (which is quite sweet of you to say), even my cardio pointed out my ever increasing stupidity at our last appointment.  I'm even pretty sure I saw her doodling a bid dunce cap on my file as we spoke.  So really my misguided belief that I was due for a "normal" result is not that surprising.

September has been a time of enlightenment and discovery on the body front.  First my body added mutant boobs (boob saga available here and here) to my list.  For those of you who can't be bothered reading about my degenerate boobs (and frankly, why would you?), I have boob tissue growing where it should not grow.  This has given Mr Grumpy a new comedic outlet whereby he'll grab my knee or shoulder and start moaning "Ooooh.  Ahhhh.  Yeah baby.  Nice boobies".   He truly is a funny, funny man.  I guess they don't call them "fun bags" for nothing.  Now, I have another exciting bodily development.

As most of you will know I emerged the victor in my battle with the thumping tube of death a few weeks back.  I really should congratulate my opponent.  He never wavered for a minute of our 15 minute death match (think Thunderdome without the metal).  Despite his valient efforts to suffocate and crush me in his belly of doom, I emerged, battered and bruised, but still breathing.  At the time I had no answers.  Just a copy of the films to drive me slowly insane in the intervening weeks between scan and cardio appointment.

It turns out that my diagnosis of "that's some weird shit man", was actually correct.  I really do have some "weird shit" going on.  My left jugular is a mutant; twisted, with multiple stenoses and weird engorged bits hanging off the side going nowhere.  My right is "relatively better".  Which is a bit like saying losing a finger  is "relatively better" than losing a thumb; not all that encouraging and definitely not a reason for celebration.  I mean, I loved The Fly, but no one really wants a mutant Jeff Goldblum living in their neck.  I have however, decided that my left jugular shall forever be known as "Jeff".

(Actually, a naked, pre-splicing with a fly, Jeff Goldblum, is rather disturbing too, The Fly 1986)

(Meet "Jeff")

So what does all this mean?  In simplest terms, the drainage system from my brain is blocked and I need Roto-Rooter to come and sort it out.  Maybe I can get the Roto- Rooter guys from Ghost Hunters to deal with it, that would be rather cool.  Brain drainage and any errant poltergeists, dealt with in one quick visit.  In all seriousness, having my brain sit in a cesspool of manky used blood surely can't be a good thing.  It makes me wonder how much it's contributing to my Bob symptoms.

The only feasible way to try and sort this out is to have a long wire shoved up my leg and threaded up to Jeff and then have a balloon angioplasty to try and open him up again.  I wonder if you can request balloon animals?  I like the idea of Jeff being opened up by a balloon in the shape of a sausage dog, or maybe a giraffe. Here's hoping the doc's at least as talented as those guys who make the balloon animals at kids parties.

The strangest part about all this, is that for years I've had knife-like pains in the left side of my neck (and to a much lesser extent my right), that involved my jaw and ear.  I never really thought much of it, as it was just another pain in the big scheme of things.  Now I find out that this pain is connected with jugular stenosis.  My migraines are also primarily on the left and for many years I have had unexplained piercing ear pain on that side.  So I'm hoping that all of that may resolve, or at least improve, when I get the balloon animal of my choice, in my neck.

I should probably take a step back to explain why I even made the masochistic choice to jump in a dreaded MRI and look at this in the first place.  It all began in my doctors office many moons ago.

At my last appointment my cardio told me in no uncertain terms that there was nothing more she could offer me to combat Bob.  She also added that if I had any ideas, she would be happy to support me.  Luckily she has proven true to her word and given my non-existent choices and progression, is happy to think outside of the box.  So up popped the completely out of left field idea of Chronic Cerebrospinal Venous Insufficiency, or CCSVI.  "What is CCSVI?" I hear you ask. In simplest terms it's where the venous drainage system from the brain and spine are impaired.  This can lead to a number of symptoms, including fatigue, brain fog and heat intolerance (can you guess why I was interested?). 

Currently this is being investigated primarily in MS patients, although more recent studies have shown it to be present in a number of other neurological conditions eg, MND and Parkinson's, and it is being posited as one of the possible causes for indefinable symptoms such as fatigue.  Although, it's still in it's infancy (I could go into the current debate, but the links below explain it much better), there is now enough evidence, that investigation and treatment is now being offered in a number of countries, including Australia.

The clincher for me was when my best friend, who has MS, had the investigations and was found to have stenosis in both jugulars.  Following treatment she had a significant improvement in a number of her symptoms (including fatigue and brain fog) and was visibly 'well' for want of a better term. 

Since then there have been a steadily increasing number of clinical reports and personal accounts of improvements following treatment for CCSVI.  Notably, the interventional radiologist (who is the Director of Radiology at one of Australia's top hospitals, so has some serious credibility) who will be doing my procedure reports that even those patients with no other significant illness who have jugular stenoses repaired, have significant improvements in attention and concentration and fatigue levels.  I'd be pretty happy with that at this point. 

Whilst my dance with the thumping tube of death was unpleasant to say the least, it has at least provided me with some useful information and potentially a chance to alleviate some of my symptoms.  My cardio is also sending me off for a doppler ultrasound of my legs to see if I have similar mutant vessels that may explain why my pooling is so severe.  Who knows, for the first time in nearly five years I may actually be able to have some relief from the day to day drudgery of Bob.

I'm not getting my hopes up yet.  To many times I have been told that a pill or procedure would help, only to be sorely disappointed.  So I'll go in with an open mind and just see what happens.  The scientist in me knows that without objective data it would be easy to say any improvements are due to a placebo effect, so I am going to contact my physio to do some basic tests pre and post angioplasty.  In many ways it's more for me than anyone else.   I want to know that any improvement I am experiencing is 'real' and not just in my deluded head.

I will admit to a few butterflies about the whole process.  Fiddling with the main drains from my brain was not something I had on my Bucket List.   But I figure if I have even a 10% improvement in my fatigue or brain fog, that's worth it at this point.  Besides if I can conquer the thumping tube of death, a balloon in a mutant vein will be a stroll in the park.

For those who are interested:
  • Here's a video from earlier this year about CCSVI & MS.
  • This is the Australian Facebook site with links to other sites around the world including Canada, the US and UK.
Michelle & Jeff :)

Really there is no appropriate musical accompaniment to having a mutant Jeff Goldblum in your neck.   Although I was tempted to add Falling to Pieces, by Faith No More (so apt in so many ways), I decided to go with Remedy, by The Black Crows as that is what I need most at the moment.

Tuesday 14 September 2010

"Where am I going?", "Where have I been?", "What am I doing here?", and "Where are the damn brownies?"

For some stupid reason I have been trying to work through the big questions of life.  Obviously masochism is the order of the day.  After many, many hours of cogitation, broken only by episodes of Judge Judy and Australia's Next Top Model, I find I am still without answers, and have a strange hankering for all things potato related.  Well, and bacon related, but that's not surprising with bacon being the food of the gods and all.  Mmmmm potato and bacon, now there's a heavenly combination, sure to cure all the ills of the world.  Where was I?  Oh yes, big questions.  Please play appropriate elevator tunes as I quickly wipe the drool from my chin.  (I'm a bit of a traditionalist and think that you can't go past Greensleeves for elevator music, but hey if you're more an Insane Clown Posse type of reader, go for it.  I wont judge.  However, I should warn you that if you insist on playing Ke$ha or Justin Bieber in your head, I will not only judge you, but your piece of toast will forever fall butter side down on the floor.  Sorry, but karma is very strict on these things).

Okay, still here?  Big questions, big questions? So far '42' still seems to best answer. Not that it really helps much.  Though 42 margaritas or 42 boxes of Green & Blacks, may make the whole uncertainty of life bearable.  So I've decided to go back to the beginning.  What the hell was that first post about?  Have a I learnt anything?  Am I still sitting in the same place with a steady pile of cobwebs forming over my head?  Do I still look like a loon?  Do I wish I didn't have such verbal diarrhoea?  Should I suggest the ingestion of a box of Imodium before reading? 

Who knows.  Well here it is.  Make of it what you will. 

PS.  I'm pretty sure that those who make it through to the end will be given a box full of warm puppies to tickle, foot massages, and butterflies on your pillow.  Well that or a big warm cyber hug from me.

My life with Bob: The ravings of one slightly deranged woman in her mid-thirties living with chronic illness—composed over several long months. July 2009.

Warning: May contain some "course" language if offended close your eyes or replace offending words with puppies, kittens, rainbows or lolly pops. May offend some Oprah fans but I do actually like her it was just one of those days, weeks, months well lets face it years.

This was written pre-blog when I just needed to get it all out.

PS: This one is rather long you may want to get comfy.

Fuck it. Fuck. Fuck. Fuck. Fuck it. Apologies to my mother (and mother-in-law), but this is the mantra of a shitty woman with a chronic illness. I’m sitting here on the couch with Oprah on the TV contemplating what my life has become. You know something’s not right when you’re having a “light bulb moment” and begin to think Dr Oz is the George Clooney of midday television. This is not what I thought I’d be doing at 35. I feel like I should be standing in front of a support group saying “Hi my name’s Michelle and I’m addicted to crappy daytime television”. Here I am a wife and mother of two not able to work despite years of study; not able to drive for more than 15 minutes; not able to travel for holidays; not able to attend my kids’ footy games; not able to be the me I’m supposed to be. The Michelle I was has been misplaced, stolen, lost; she’s in hiding somewhere with the elusive weapons of mass destruction. The one who sits here now is an imposter, one of the pod people come to life. I’m waiting for the epiphany, to find the inner beauty and “the gift” that all Oprah’s guests seem to have when they experience a horrific accident or terminal diagnosis. If these people can do it why can‘t I? No pressure right? Thanks Oprah for making me feel inadequate compared to these smiling, ecstatic people. I like to think that behind the scenes they are as angry and pissed off as me and what you see on the screen is really a combination of Prozac and tequila shots. Admittedly, I am coming to terms with this new alternative me, but it’s a slow process and I’m buggered if I’m going to smile happily and pretend it’s all shiny, shiny, shiny. There that’s my bitch for the day. Five minutes of woe is me between the loads of washing and when the kids come home from school.

It doesn’t matter what your poison is if you have a chronic illness and are in your mid-thirties you know how much life can suck. My joy is dysautonomia, otherwise known as that bastard vague syndrome which is hard to understand, even harder to explain and craps on your life or, as I now like to refer to it, Bob. Bob is like a crappy boyfriend. He turns up only when it’s convenient for him, forgets your birthday, buys “you” an x-box when you really want a bottle of Chanel no. 5, and takes you to Wolf Creek for your anniversary when you wanted to see Atonement. He’s the guy you’re embarrassed to introduce to your family and friends. The one you just want to forget but who you keep running into when you’re out on the town.

With Bob and all his like minded mates it’s a choice between tears and hysterical laughter, and I’m all for the hysterical laughter. I think when you have your dietician appointment lying on your back with your legs in the air so you don’t pass out, insane laughter does seem the best option. Life with Bob can be quite disheartening otherwise. Even when you’re doing all the “right” things you are constantly slapped in the face with the fact that you are ill and that you’re not like everyone else. Having worked in rehab I thought I knew it all but then you walk in the gym and notice you’re the only one there who wasn’t born during the Great Depression. You might as well have a flashing neon sign over you head saying “FREAK” in ten metre high letters. You suddenly realise how hollow all the words were when you told patients to think positive and remain motivated. Positive my arse! I’ll tell you about positive. Discussions about music or the latest celebrity news or where to eat are replaced by riveting discussions about support hose and bowls. I used to give in-services on determining cognitive capacity and write rehab protocols! This is when you come to the realisation that you’re one blue rinse and a hip replacement away from turning into an 80-year-old woman! It times like these when I feel it should be compulsory for physios to put Monty Python’s “Always look on the bright side of life” on loop for the whole gym session, or at least serve vodka jelly shots.

Logically I know it’s not the hospital’s fault or even the doctors’ or therapists that there is nowhere for patients in their mid-thirties. Support groups and rehab programs are for teenagers or the elderly, apparently no one gets sick or injured in between. There must be something really wrong with me to be so ill and incapacitated at this age. Traditional support groups don’t really work for my age group anyway. Who has time to sit around in a circle discussing their problems and singing kumbaya? I may be tarred and feathered by my psychologist peers, but this approach won’t get me through the next school concert or help me work out a plan to get to and survive the Myer sales without having to lie down next to rack of Wayne Cooper dresses. Even when trying to find information about Bob the majority of information is for teenagers and frankly tips about structuring my school day aren’t that helpful when trying to run a household, organise kids, be a wife and not pass out. Thank God for the yellow wiggle, aka Greg Page. When he came out at least people realised Bob was a legitimate, serious, life changing illness. I never thought I’d buy a copy of Woman’s Day in my life but thanks to his article I can now hand people a copy to read and I can sum Bob up with one line, “I have YWS (sounds exotic right?) aka Yellow Wiggle Syndrome”. It’s a sad indictment on society that we need a sick celebrity to legitimise what we are going through. I wonder, if Angelina Jolie came out to say she suffered PMS from hell would the world look kinder on we average woman and our monthly need to binge on chocolate, whilst sitting with hot packs on our stomachs, crying at the fluffy bunny story at the end of the news, then irrationally ripping off our husbands’ or boyfriends’ heads.

Life with Bob has been a roller coaster ride. Two years ago when I first got ill I had no idea what was wrong all I knew was that I felt and looked like death warmed up. Christmas 2006 was the turning point. I’d been ill a couple of times earlier in the year and never quite felt like I ever got back to where I had been before. Then kaboom!!! My life went into free fall. All of a sudden I was weak, fatigued, permanently nauseous, sweating like there’s no tomorrow, shaking, uncoordinated, feeling like I was about to pass out and on the really crappy days throwing up or actually passing out. Even thinking was hard. One of the biggest problems with Bob is that it is a relatively rare and unknown syndrome that can mimic a number of other disorders. Depending on who your doctor is you may be diagnosed sooner rather than later but it really is potluck. Even supposed specialists either had no idea, told me it was all in my head or that there was no hope. I think my favourite (insert large amounts of sarcasm here) specialist was the one who told me that it was all in my head. The one comment that sticks in my mind is “when a woman your age comes in with these symptoms it’s always in your head”, who says doctors lack bedside manner? With that he sent me out the door, diagnosis of “stupid, emotional woman” stapled to my forehead. I don’t think I’ve ever been so upset, insulted and incredibly angry all at one time. I couldn’t even speak when I left and I just cried for hours. The reality is as a woman you know your body and you know when something is wrong. Coming from a psychology background I was well aware of how thoughts and emotions can affect physical health, and it was a shock to meet a supposed specialist who could twist it so appallingly and was unable to understand that maybe I was so upset and stressed because I was so physically ill. Perhaps the one good thing about being 35 and educated was that I was unwilling to accept what this archaic and chauvinistic pig of a man said and sought out a second and eventually third opinion.

Among Bob’s many charming features is testing overload. I think I’ve had just about every test known to man over the past two years. I’ve been poked and prodded, scanned and measured to the nth degree. I honestly think I have given my weight in blood over this period. Dignity is rather hard to find when you’re strapped up like Hannibal Lector trying not to throw up on the doctor whilst passing out. When it comes to Bob the tests can get scary especially when you keep trialling drugs and lifestyle changes and nothing works, this is when the panic begins to set in. In many ways Bob is a diagnosis of exclusion, both medically and socially. The basic blood pressure and fainting issues are there but they can be caused by so many things. It doesn’t help that I had worked in a neurology setting. I had already had a number of sleepless nights wondering about possible diagnoses but had never had the guts to say them out loud. When my cardiologist mentioned the dreaded words “it could be MS or a tumour” followed by a number of other possible nasties I missed everything else she said in the appointment. Thankfully it wasn’t any of the real nasties but it was a horrible couple of months to find out. The fear I felt prior to and after the MRI was incredible. Despite my fears it was very routine for the neurologist and she was rather blasé about the whole thing—almost dismissive. I was sitting in her office with my incredible husband holding my hand, trying not to throw up with dread and she just said nope not MS, no tumour, no….., and started a voice recording of her letter back to my cardiologist. It was strange to feel so relieved and so let down at the same time.

How do you explain to someone that not getting a serious or life-threatening diagnosis is disappointing? After months of living with uncertainty and the fear and the doubt it generates, you start to long for a concrete diagnosis no matter what it is. How do you plan your life or explain your illness when it is this shadow being that can’t be measured or understood. I’m a rather practical kind of person. If I know what it is I can educate myself, I can plan my life; I can do what needs to be done. I can be legitimately ill. Even all these months later having a diagnosis (although still no concrete cause to treat) I still have that bastard’s comment sitting, stewing in the back of my thoughts, “it’s all in your head [you loser]”. I often wonder if he realised how soul destroying such a comment can be especially when you have such a complicated and unknown condition. Even if I had been suffering from Depression such a cold and callous attitude could hardly have been considered therapeutic. I always thought that part of the Hippocratic oath was “first do no harm”. All I can say to him is karma’s a bitch buddy.

Uncertainty is bad enough for me but it seems to be excruciating for everyone else. All your friends and family want to know what’s wrong and when you are going to get better. Even relative strangers want to know or to give you “helpful” advice on what is wrong with you and what you should be doing. When the uncertainty persists for any length of time fatigue sets in, not for you but for all the bystanders. Apparently you aren’t meeting their ideas of legitimate sickness. They begin to look at you as if you’ve just admitted that you sacrifice small furry animals to Beelzebub in your spare time. “What, you’re still ill? Why aren’t you better? Why don’t you know? Surely the doctors must know something? Can’t you see someone else? What’s wrong with you?” Friends and family start to drift away. Weekly visits or phone calls become fortnightly, then monthly and then it becomes months (if you’re lucky) between contacts. They are happy to be supportive initially but then it becomes tiresome. Their lives are busy. You and your weird arse, all in your head “illness” are just too much work. You aren’t the person they knew, the person you’re expected to be. Admittedly, hanging out with me and Bob is not exactly a laugh a minute and frankly it can be hard work, but you expect more from the people you once held dearest. Only the strong and true are willing to put in the hard yards to stay in your life. These people are like gold and should be cloned and bottled to be given to every person with a Bob in their life.

In general, your relationship with Bob makes you a social pariah. Bob is a cantankerous soul. He stops you from participating in life. You can’t go to the movies, you can’t go late night shopping, and you can’t spontaneously stop in for coffee or go out for dinner. Even talking can be difficult when your blood pressure is so low you can’t find the right words or slur so much you sound like you’ve just finished a bottle of Smirnoff. Stringing a simple sentence together becomes akin to creating peace in the Middle East. You can’t even follow a fluffy conversation about Britney Spears and her fondness for going commando.

You get to the point where you have to create what I call your “pretty sick” face to survive. This is the face you develop to reassure all the other people in your life that you’re ok and therefore they are ok. This is the Disney or Oprah version of illness. It’s when you pile on the spack filler to cover the dark circles and pasty skin. Put on nice clothes and push yourself to the point of exhaustion to alleviate the fears of others. You do your hair, put on your lipstick and smile like one of Oprah’s orgasmically cheerful, yet tragic guests and say “I’m so happy, this bitch of an illness has allowed me to find my authentic self”. If, God forbid, someone should see you in the depths of misery because you can’t get out of bed and can’t hold a glass of water, then you are forced to spend what little energy you have reassuring them you are ok and that you are sorry for making them worry. The energy required to reassure others is more exhausting than words can describe.

There is an unspoken pressure to be the poster child of “pretty sick”, heroically defeating your illness with a smile and wink, whilst jogging for a cure, attending charity balls, balancing your home life like the Cleavers, and being a role model to which all other sick people should aspire. Once you do this you need never reassure anyone about how “well” you are. Simple. Right? Whilst I understand that family and friends worry because they care, I really don’t have the energy to hold their hand throughout. Sometimes you just want to be selfish and say, “Let me cry, yell, swear or jump up and down. Let me wallow in the misery of my life for one day. Sit there quietly and just let me be”. Sometimes all you want is silence to vent and someone to give you a silent hug either figuratively or literally. I don’t want suggestions, I don’t want to hear how you wish you could help, and I don’t want to hear how this is impacting on you. I can’t look after you when I’m barely looking after myself. Just take responsibility to take care of you and let me concentrate on me. This is one of the times I am so grateful to have my incredible husband and kids in my life. Out of everyone they are the ones who truly let me be me. They accept me pasty face, purple feet and all. If I’m so sick I’m lying on the floor with my feet up on the couch they simply walk around me or ask if I want a drink. They accept that I can’t always do what I used to do, that I am often vague and weak and can’t always attend different functions. They let me be sick without any fanfare or stress. That is truly precious!

My husband David used to affectionately call me “Big Brain” and I’ll admit to a certain secret smugness about my level of intelligence in the past. Well didn’t that come back and bite me. Words were my life. I even won an international prize for a conference presentation. Now I have days where I sound like I’ve been smoking pot for the last 10 years. I look in the mirror and think who the hell is this pasty faced, fog brained woman looking back. Bob is obliging one day and stubborn and narky the next and some days if you’re really lucky, it’s an hour to hour crapfest. Normal is not a word to be associated with Bob. Basically Bob is a Bitch.

Where once my bag contained perfume, Myers catalogues and articles on the differential diagnosis of various dementias, I now carry a bottle of salt, a puke bag and contact details for various specialists. I wear granny pressure stockings and shorts in the middle of winter. I live in air conditioning, as I wilt when the temperature even approaches a balmy 20ºC and put ice packs on my neck at physio. I drink litres of water each day and chug salt. Living with Bob is not glamorous. Your mother’s advice to make sure you wear fresh underwear takes on a whole new meaning when you have to consider whether the checkout chick at the supermarket may get an eye full if you unexpectedly go arse up. There’s nothing quite so uplifting as having your son say “hey mum you have grandpa feet” when he spies my swollen purple feet under the bench. Perhaps most cruelly of all, having Bob in my life I’m supposed to avoid alcohol (although sometimes the repercussions are just worth it). What sick bastard created such a crappy, life altering disorder that also won’t let me have a glass of Sauvignon Blanc to make it all bearable? As I said Bob’s a bitch.

Every woman has a close personal relationship with guilt. If you’ve popped out one or more rug rats then you truly know what I’m talking about. Guilt is one of the unglamorous side-effects of pregnancy, like the haemorrhoids and excessive flatulence that our mothers never warned us about. When your milk comes in you get a simultaneous lifetime supply of guilt to boot; would you like fries with that? You beat yourself up constantly for all your failings as a mother. We all compare ourselves to little Johnny’s mum. You know her. That woman with perfect hair and coordinated outfit, who attends all the excursions, bakes cookies for class, iron’s little Johnny’s uniform perfectly, makes the perfect nutritional lunch and is a clone for Mrs Brady. God how we hate her! However, introduce her to Bob or one of his mates and little Johnny will be rocking up (late of course) in yesterdays grotty jumper and unmatched socks, with a jam sandwich and piece of plastic cheese in his lunch box. Bob adds a whole new level of guilt to motherhood. Having Bob in your life means that you simply can’t attend every performance or sporting match; that you forget to hand in the excursion notes or to wash the uniforms. It means you can’t drive your child to a play at a friend’s house or take them to the show. This is when guilt goes into overload. You don’t need anyone else to tell you should feel guilty you “know” you are the world’s worst mother. I truly realised the impact Bob was having on my and my family’s life a few months after he started hanging around. My eldest had just started high school and we had an information night. We got as far as the end of our road and I had to pull over I was shaking so much and could barely focus on the road. We sat on the side of the road for 30 minutes with my head between my legs until we could drive back home. It was the start of the kids missing out. They have put up with a lot over the past two years. It scared the hell out of them and I was too ill to either fully realise or comfort them. It was only a few months ago my youngest could finally tell me that he had thought I was going to die. It felt like someone had reached in, ripped my heart from my chest, threw it on the ground and stomped it into oblivion. I just wanted to reach out and wrap him in my arms and never let go. A ten-year-old (or as he was then, eight) should never have to deal with such adult issues, the guilt was and is overwhelming for putting him in this position. Even my stoic eldest was suffering in silence; he just didn’t want to worry me. A 14-year-old shouldn’t be worried about whether or not his mum will be able to drive home safely from his bus stop. He should be thinking about girls and friends and being a normal obnoxious, self-absorbed teenager. You don’t choose to have Bob in your life but you beat yourself up every day for the burden you are placing on your family since he came to stay.

The second layer of guilt revolves around being a wife. I could never have survived the past couple of years without the support of my husband. As cliché as it sounds, he really has been my rock. It’s hardly been all beer and skittles since Bob came to stay. I know he gets frustrated but for the most part he doesn’t say much. Bob has changed who I was. Previously I was independent, enthusiastic and enjoyed going out. I could balance work, study, kids, husband and home whilst meeting a girlfriend for fizzy coffee on a Wednesday. Now he has to take time off to drive me to appointments and our social life is a distant memory. Sadly, even our parents have more exciting social lives. He’s had to take on more of the afterschool and weekend activities. He gave up a job he loved and took on one that crushes him a little bit more each day to be home and able to help out more. The start of this year I had to give up work which means we are now on one wage. One-on-one time is limited because I’m always so exhausted. I feel like the world’s crappiest wife. I feel like a failure. I’m so not holding up my end of the bargain. I know we vowed for better or worse but bloody hell a little bit of better sometime soon would be nice. I’m sure he thinks he got the booby prize. Despite all this he’s always there when I need him. How many guys would quietly and without fan fare put on thermal underwear and a jumper so as not freeze whilst I sit under the air conditioner, in winter? He accepts that Bob has made me a freak. When I’m lying on the couch trying not pass out he quietly comes lifts up my legs and sits on the couch next to me or unobtrusively holds me up so I can stand at my auntie’s funeral. Who would drop everything and drive two hours to come home, because his wife is crying on the phone barely able to get up off the bathroom floor? In some ways it would be easier if he yelled and got angry at me at least it might lessen the guilt. I love the fact he pays me out for my brain fog and accepts that I may need to stop in the middle of the shops and put my head between my legs in full view of all the other shoppers. I love the fact that he doesn’t treat me like a sick person; he sees there’s more to me than Bob.

Anyone with a Bob in their life knows what its like to lose their identity. Suddenly you become the sick person. Suddenly you become Bob. My husband and kids are the only ones who really seem to see beyond Bob. Family and friends no longer ask you what you’ve been up to. They ask about Bob. Every encounter begins with comments on how you look. “Gee you look pasty today”. “Gee you don’t look so pasty today”. Everyone seems to be on the look out for signs of illness so they can tell you about it. It’s as if they think you don’t actually realise you’re sick so they see it as their civic duty to tell you. Do they really think I have no mirrors in the house or that I seriously think I look like Heidi Klum today? Maybe they think you are trying to replace heroin chic for pasty chic? It’s easy to get sucked into the Bob conspiracy. You get so involved trying to find out information. Your life revolves around medical appointments, tests and drugs. With Bob you have to watch what you eat and drink, you have to watch your fatigue levels, the temperature, make sure you do exercise but not too much, you have to organise and plan and hope that Bob gets in line with the program. Basically Bob becomes the centre of your universe by necessity. Trying to maintain even the tinniest sliver of you is bloody hard. For me I hate being a patient. I know no one likes it, but I truly detest and resent Bob for making me a patient. I’ve always been on the other side of the desk and frankly I was happy there. Being a patient is disempowering, choice is no longer a word that belongs to you. Other people are making all the decisions and when you run into a delight like my chauvinistic bastard you just want to scream. Even having worked in the health system I had no idea about Bob. You trust that the person on the other side of the desk knows what they are talking about and actually cares more about your wellbeing than paying for their golf fees. You need to get to a point where you shout “NO MORE” and take back your control. This is how I got to my current cardiologist. Anger is healthy when it gets you the care you need. She was the first out of numerous doctors to actually ask me how I was coping with the kids and being sick. I nearly jumped across the desk and hugged her (well maybe dragged my sorry body out of the chair and slowly stumbled over and collapsed on her with happy exhaustion). She was the first to see there was more to me than Bob and that Bob was a legitimate illness. If nothing else, that made me feel better than I had in months.

Maintaining you is hard when Bob is in your life. For the most part you can be ill in private but every now and then Bob raises his ugly head in public. I dread these moments. When you’re trying not to throw up or pass out in the local ice cream shop the last thing you need is a gaggle of people asking you if you’re ok. Of course I’m not ok! I’m pasty and sweaty, my head is between my legs and my face is an inch away from an old bandaid, a piece of used chewing gum and a decidedly iffy short curly black hair. I’m using every ounce of concentration not to throw up on your shoes so don’t ask me questions or you’ll wear it. I live in a relatively small community and privacy is a rare privilege. Everyone soon knows you as that weird, pasty, angry woman from the ice cream shop who nearly threw up on their shoes. You have become Bob. Well meaning family and friends begin to treat you like an invalid. I have a message for everyone. I do not need to be followed and watched. I don’t need to sit in a special chair. I don’t need to be asked if I am alright every 3 seconds! This in and of itself is disempowering and may result in me beating you to a bloody pulp with the special chair.

I am in constant conflict with Bob to remain independent and damn it I refuse to let the bastard win. (Crap, I’m starting to sound like one of Oprah’s guests. I’m going to have to change channels and start watching other quality daytime programming such as Days of Our Lives or Wife Swap). Independence when you have a Bob in your life is not the same as independence pre-Bob. Independence now is being able to do the grocery shopping by myself without having to sit on one of those grotty stacking stools half way through or leave my full trolley in the isle. Independence is making dinner even if you have to sit on a chair in front of the stove. Independence is 10 minutes in the garden weeding whilst sitting on a step. You need to grasp these events and hold on for grim death. So don’t be surprised if I bite your head off when you tell me to “sit down and you’ll do it”. Some days it’s worth pushing yourself to exhaustion just to complete a job even if you have to spend the next two days flat on your back. Finishing that section of garden bed (even if it grows over with weeds over the next two months) is worth it to feel normal. Rationality does not come into play here.

Old Michelle is still missing in action, although small parts are starting to re-emerge. Weirdly little bits of the pre-study/work/kids me are also starting to come back. I’ve always loved to read especially the classics but work and family commitments left little time for reading for fun. Recently I’ve started reading again. It’s a slowwww process with a fogged brain but I’ve managed to get through Anna Karenina and Crime and Punishment. Have started War and Peace which may verge on stupidity, as at this rate I may be 80 by the time I finish. I have always loved cooking and this is one of the few things I can still do. My family is used to trying weird and wonderful concoctions. My new drugs have stopped my shaking for the most part so at least using my butcher’s knife is no longer like playing Russian roulette with my fingers. Small scale gardening has also become possible. Whilst before I would be mowing and chopping and planting, now I’m stoked when my herbs grow in the pots outside my back door. I’ve even started drawing and painting again; it may be closer to pre-school finger painting than a Rembrandt but no one else needs to see it.

I was shattered when I had to finish work. I put off calling my manager for weeks while on LWOP because I was so upset and I knew that once the words were out I couldn’t take them back. I cried and swore. I cursed Bob with every name under the sun. It was the last straw. I never thought I’d get over it but on my good days I hardly think about it any more. Financially the guilt is there in spades but the work itself is no longer in my everyday thoughts. Who I thought I was and who I am now are very different people. I think I’m still in mourning for my picture of me and what I thought I wanted. There are many stages to grief and there is no clear process or time line. It’s not like “Step 1 feel sad, Step 2 feel angry…….Step 10 closure”. It’s sad, then angry, then numb, then angry again then, pissed off, then accepting, then sad, then angry….and so on. Just when you think things are starting to balance out, Bob steps up with a sucker punch. Hence my philosophy of hysterical laughter. When you have a crap day you need to find something to laugh about (especially when a glass of wine is not an option). As a wife and mother it is not practical to pick up the kids looking and acting like an extra from One Flew over the Cuckoo’s Nest. I have a penchant for Monty Python. You can’t watch The Life of Brian or The Holy Grail and not laugh at the absurdity of it. Alternatively, as any woman with a pulse knows, any movie with Johnny Depp has remarkable healing powers. The other thing that has made Bob bearable is that we recently adopted a dog. He is the best, if rather smelly, medicine. When I’m sad or sick he comes and sits next to me. He’ll put a paw on my arm or put his head on my lap or next to my head. He seems to know when you need that extra bit of love. You can whinge to him to your hearts content and he just sits there and listens. Being a puppy he too is mildly insane and that ensures laughter at least once a day. Every person with a Bob in their life should have a dog.

During my two years with Bob I’ve thrown up in the shower, cried at physio, the doctor’s and at work, and had to lie down in the back of my car on the side of the road. I’ve had to lie down on the floor of my office with my feet up in the air (wearing a skirt, classy!) and had my legs go out in the middle of the shopping centre. I’ve had to take spare clothing to work due to the very lady like sweating and chugged salt during a school concert. I’ve sucked as a mum and a wife. This is Bob in all his glory. I am still hopeful that somewhere in a galaxy, far, far away that my cardiologist will have an epiphany or someone will develop a drug and I can put a hit out on Bob. In the meantime I’m going to revel in being one of those bitter, pasty, insane, “ugly sick” people that will never be invited on to Oprah. Although, if she is offering free tequila shots in the green room……..

Hope it wasn't too painful.
Michelle :)

Sunday 12 September 2010


I have a sneaking suspicion I may be one step away from reaching my limit.  I always knew I had one.  I was just cocky enough to believe that mine was a hell of lot bigger than everyone elses.  The Grand Canyon of limits.  But of late it seems more akin to a thimble, than some humongous marvel of the natural world.  Of late the continual blows seem to have reached critical.

I've always been the one who holds it together when everyone else is unravelling.  I've always been realistic and practical.  I have the stifling of emotions down to a fine art.  I don't ask for help.  I don't rely on others.  I don't share my demons.  I sit and hold the hands of others whilst they give free reign to their emotional wildfires.  I pick up the pieces.  I pat the hands.  I make the soothing noises.  I distance myself from reality to give what is needed.  And those that receive my ministrations continue, oblivious that my need is as great as theirs.  A secret I hold tightly to my chest.

But reality is a persistent cow.  All my hard fought battles to be positive and hopeful are being swamped by a relentless tide of dread.  All the negative thoughts I suppress so expertly, are welling up, like fetid water seeping through the rocks beneath my feet.  I feel myself sinking, dissolving, into the murky swirl around my ankles and I don't even know where or how to begin to look for aid.  I sabotage myself, continually refusing permission to even think of succour.

I rally against it.  In vain it would seem.  All those little shadowing voices.  Little bites, ripping at my spirit.  Normally I can beat them back.  But today, today they are goose stepping their way across my being, relentless in their desire to conquer.  I am but the dirt under their boots.  They care not what I feel.  They are as devoid of emotion as insects.  Driven on by an instinctive need to consume.  I fear that today they will take all that I am.  Part of me wonders if submission would bring relief.  Part of me wants to let that seductive darkness surround me.  To lie in it's comforting embrace.  To end the exhaustive war for me.

I want to curl up.  To hide away.  I want to cry out "no more".  The emotions I have long suppressed threaten to rise up and sweep me away.  I fear them as others fear death.  I fear that to let them have voice I will lose the me I have long fought to create.  I fear to unshackle them and reveal the truth.  To expose that the long crafted façade is really a fraud.  A fraud perpetuated not just on others, but also myself. 

My voice cries out "This isn't me.  I am not like this".  But the rising tide of doubt and dark says otherwise.  How do you fight an enemy that comes from within?  Walls can be built but the enemy remains on the other side.  It sits there patient.  Waiting.  It knows it's time will come.  It knows that as hard as I deny it, it still exists.  In my waking nightmares.  It roams the corridors of my mind, seeking escape.  Leaving a trail of wreckage in it's wake.

It has many names; doubt, hopelessness, helplessness, guilt, emptiness.  Once released I know not whether I can ever restrain it again.  To allow it free reign may let forth an endless and destructive torrent.  I fear to lose myself in that moment, swept away forever in the darkness.  To never regain the hard fought illusion of strength.  Today it pounds heavily at the door.  Today the cracks have widened.  Today I fear it may gain admittance. 

I never use the word 'hope'.  It has never been part of my vocabulary.  Hope is a thing for those who cannot bear the harshness of reality.  Hope is bound tightly to it's mate, disappointment.  To allow it entry is to also give admittance to more pain.  Hope is for fools.  But today I find myself envying those who have hope.  Today I want a little piece of that for myself.  Today I want to believe that things could get better.  That my body may finally be healed.  That the wounds to my heart and spirit may someday be less raw.  I don't care if it's delusional.  I only want it for a moment.


Saturday 11 September 2010

Today I'm A Daisy: Raising Dysautonomia Awareness.

Hey all.  Today's post is just a quicky thanks to steady rumblings of approaching migraine and just a dash of apathy.

Next week 13th to 19th Sep 2010, is National Invisible Chronic Illness Awareness Week and Dysautonomia Awareness Week.  I wont bore you with tales of woe is me, or go on with a speal of "I am a health reject, let me tell you the ways".  Most of you are well aware of my dysfunctional relationship with Bob and his mates so I wont rehash it all.  In all honesty some days I bore myself with the details of my decrepitude.  If you want more info on Bob there are a list of resources over on the side. 

Today I have tried my hand at creating a video.  Well actually I created a power point presentation, then burst out into a long line of profanities as I realised I couldn't work out how to put it on either this blog or Youtube.  I really think I need to add "Luddite" to my list of disabilities. 

So following an adult tanty, rather a lot of pouting, and cursing the universe for being a spiteful bitch once more, I must say a huge thanks to Mr Grumpy.  Who, despite much swearing and threats of death to the computer, managed to transform my dodgy power point presentation into a movie format complete with audio.  Now that's love.

So without further ado, here's my feeble attempt at finding my happy place in amongst all the crap. 

Michelle :)

Wednesday 8 September 2010

Garden VS Swiss Cheese: Update On "My Boob Is A Garden"

First I'd just like to say a big "Thank You", to everyone for their kind messages, emails and comments on my last little vent about my decrepit boobage. They were very much appreciated. I think I'd just reached the "you have got to be kidding me" point and needed to let it all out.  Probably with a touch of too much information but hey, it''s not like it's the first time I've gone down that path.  Just once I'd like to see a medical professional who says, "your [insert body part] is perfectly normal".  Just once.  Is that really too much to ask?

Apparently the answer to that question is a big fat, "YES".

I have decided I need to send an official letter of complaint to my parents to chastise them for their piss poor procreation efforts. I've said it before and I'll say it again, perfunctory sex is bad. Look at me. This is what happens when you put a decided lack of effort into your boudoir shenanigans. Yes Mum and Dad I am talking about you. I am the product of meh sex. Really that's the only explanation for a body which is dodgy at every level.

I went back to my GP today to get the formal results. Picture the scene. Nice clinic. Picturesque scenery in the beautiful moutains surrounding Melbourne. Tree ferns at the window. Rosellas and King Parrots flying through the air. Lovely GP, who I'd recommend to anyone, grabs the ultrasound report. Puts it on her knee. Looks up.  Stares me in the face and says incredulously, "Oh my God".

Yep that's right. "Oh my God". Always a good start. Why yes my boobs have been busy as the long paragraphs of Time New Roman size 12 now officially report. Not content with one weed, or two, or three. My booby garden has popped out 10, yep 10, new and exciting varieties of weeds, not including my escapee bits of boob inhabiting my body from my knee cap to my ear lobe. Yes, yet again I am a reject.

I am grateful that they are not of the particularly noxious variety and can thus stay where they are for the moment. But geeze Louise, is it really that hard to have a normal body part? Apparently once more my decrepitude is of the gold medal variety.  I have declined the kind offer of being poked with multiple needles in the boob and taken the "keep and eye on them" approach to management.

She did laugh when I said the radiologist had told me that my boob was a garden. Though she thought it had more of a "Swiss cheese" quality. I shall never look at a block of Jarlsburg the same way again. "Garden" or "Cheese", these are my choices. 

I was also given more of a tsk tsking, and have been told that I need either 6mth or 12mth ultrasounds from now on. I also get to start the joy of mammograms at age 40. Though, as I have decided to stay 35 and will have "30faux" birthdays from now on, I may never have the joy of seeing my piklets squished between the vice of the mammogram.  She did take the time to point out that the girls were of the more petite variety, because of course I hadn't noticed, and may be difficult to scan.  Small, weedy, Mini Babybels, who aren't even up to the task of being squished.  I am beyond expletives now, and am on the path of resigned sighs of acceptance with a side of defeat.

So yet again I am a resident of the quaint town of Freakville.  If anyone knows where I can buy tequila by the gallon let me know.  Home delivery would be a bonus.


Friday 3 September 2010

My Boob Is A Garden

It's been one of those days.  One of those days where you just say "fine", sigh, assume the position, and brace for the pointy end of the pineapple that you know is coming.  Today I was told my boob was a garden.  Yep.  A garden.  How do you respond to that?  I knew they could cause earthquakes, bring men to their knees and fill out a training bra nicely.  But a garden?  No.  That's a new one.

Today was yet another fun scan day.  Not an MRI today, for which I gave praise to every deity known to man.  Today was boob ultrasound day.  YAY. 


I have bodgy boobs.  I've always had bodgy boobs.  Over the years I have had many a cyst or suspicious fibroadenoma either biopsied or whipped out.   So when I felt something whilst I was doing my daily ablutions I just said meh and kept on scrubbing.  Hence it has taken me a while to get my butt into action.

When you're chronically sick you pick the most pressing problem and forget the rest.  So I may be a year, or five, overdue for my yearly ultrasound.  Oh and haven't my boobs been busy during that time.  They have been fruitful and multiplied, like randy little rabbits.  If nothing else at least I know I don't have lazy boobs.

Fantastically, I had the joy of the student radiologist feeling me up.  Apparently I am a fantastic teaching tool and provided a community service today.  My boobs are both Einstein and Mother Teresa all rolled into one. 

I got to lie there exposed to the world as the radiologist and her learner driver rolled goop all over my petite mammaries.  All the time going "Ooooh", "Ahh", "Look at that", "Wow look at that".  I did get a little miffed when they started to say "Well that one could go either way".  You know, that's not what I want to hear as they are looking at the girls. 

So I found out today that I have multiple abnormalities growing away happily.  Should be a bumper crop in the garden this year.  I also found out I have ectopic boob tissue.  So not only was my uterus not bright enough to keep itself in one place (hence the endometriosis) apparently my boobs are equally inept. 

I have boob tissue growing everywhere from my arm pit to my knee cap.  Okay the later may be an exaggeration, though not by much, and it would explain why my knees are so perky/knobbly.  It's mixed up in my lymph nodes and in my muscle tissue.  Basically my boobs are dumbarses.  As, Mr Grumpy said, "if it's growing everywhere, you'd think at least some of it would grow in the right place".  Ha ha Mr Grumpy.  You are hilarious. 

The experience was also punctuated with me making mad dashes to the loo to throw up and evacuate my nether regions thanks to Bob.  Tops!  Mind you the radiologists did end up putting on their jumpers and turning the aircon on for me so that's a bonus right?  So now more waiting for results.

My body is officially one of the fish that John West rejects.

Pass the tequila.

The gardening Michelle.

Thursday 2 September 2010

The Thumping Tube of Death

Well I did it..  I made it through and lived to tell the tale.  Victory is mine.  Maybe I can get a trashy t-shirt made to commemorate the occasion.

"Why don't we do a scan?"  Sounded like a good idea at the time.  Obviously I was away with pixies, as I appear to have agreed whilst completely forgetting my gut wrenching fear of small spaces.

Give me snakes.  Give me heights.  Give me ramshackle Vietnamese bridges where a landslide had taken out the road the day before.  I can deal with that.  However place me in a small space and I am totally convinced that I am suffocating and going to die.  Even back in my navy days, I was happy to fight oil fires, with thick black smoke blocking my visions and the flames rolling over the roof like a scene out of Backdraft.  That I can do.  But that damn face gear (shudder).  I have never tried so hard to find my happy place as when I had to put that large mask over my face.  I don't care that I was hooked up to an air tank and was therefore assured of continuous O2, I still felt like I was going to die.  Agreeing to a MRI therefore suggests I have more than one screw loose.  

My last MRI adventure was unpleasant.  A head and spine combo.  50 minutes complete with head gear and chest plate.  My panic at the time did mean I was moved from the dark cave/coffin at the bottom of the hospital to the bright shiny room and Mr Grumpy was allowed to sit in and hold my foot.  I may or may not have nearly cried at the time when they said I couldn't be sedated, as that had been my grand plan to make it through.  I swore after I would never have another.  Yet there I was again, trying to swallow my fear (and vomit) yet again.

This time around it was 15 minutes (though it felt like 15 years), and just my neck.  Time to suss out those dodgy blood vessels of mine with an Magnetic Resonance Venogram (MRV).  I know that not much in the way of blood is going to the old noggin (about 50% according to the Prof a while back), which explains a lot.  This time it was to see if what little was getting up there was draining out properly.  I've known for quite a while now that my veins are dodgy.  My cardiologist delights in telling me how bad they are and showing others my gold medal winning blood pooling abilities.  I feel special, really I do.  Maybe I can get my photo on a Weeties box?  Now there's something to which I can aspire.

I had managed to live in denial about my upcoming suffocation for a number of weeks.  Then the night before I had the joy of filling out the bazillion questions on the form in between hyperventilating and throwing up a little bit in the back of my throat (anxiety rocks).  I will admit to a certain level of childish amusement when one of the questions asked if I had a "penile prosthetic".  Really?  I can understand the pacemaker question, and asking if I was a welder (only in my Flashdance dreams), but fake penis?  Not so much.  I have been told that my voice is rather deep for a woman, but it's not like I sound like James Earl Jones. All of a sudden I had Lou Reed's Take a Walk on the Wild Side playing in my head.  I will say that my fear did take a turn for the worst when I read the final lines on the back of the sheet.

What the hell radiology people?  Don't put a line like that on the sheet you send to claustrophobia girl.  Sheesh.  "Thank you" just doesn't cut it.

This time around I was accompanied on my journey by my bestie Kerri.  You know someone is a true friend when you hop in their car and say "sorry I'm having one of those pee every three minutes days we may have to stop frequently on the way" and she doesn't bat an eyelid.  Or when they see you freak out and not care.  Or pretend to be laughing at your ridiculously huge scrubs and not the small whimper of fear that may have escaped your lips.  A true friend makes you laugh to take your mind off things and even offers to sit in if you need.  I did suck it up enough to not beg her to sit in with me.  I was rather proud of myself.  A true friend also doesn't tell you that the machine you are about to go into is in a dark little room, is very tiny and lacking any mirrors to see the outside world.  If she had I may have run screaming from the waiting room.  A true friend doesn't tell you beforehand that she's so relaxed she falls asleep in MRIs.  Thanks Kerri for being that friend.

I will say that the staff were lovely.  I wanted to hate them for what they were putting me through, but it's hard when they come in and pat your hand and tell you that "you're doing so well", in a Romper Room voice.  I had the joy of trying to explain Bob in the pre-interview, it never grows old.

"Do you have high blood pressure?"


"Do you have low blood pressure?"


Confused look from radiologist.


She was lovely though and didn't even bat an eyelid when I suggested she add a few plus signs next to the claustrophobia question.  Nor did she call me a freak for saying that I wanted her to come to all my blood draws as she was the first person in a very long time to find a vein first time round.  Or that I thought the IV should be pumping in tequila instead of a contrast dye.  She even joked as I was leaving that she'd be happy to come along the next time I needed a venous line.  To top it off she was happy to take photos for me and suggested a good place for a recovery coffee.

Swallowing down fear and vomit is hard work.  Standing in the door way and finding that the machine was an old super small MRI that made the last one look like an open field, I must admit to a moment of hysterical screaming panic in my mind.  I'm still amazed that I managed to put one foot in front of the other and not only get to the machine but also lay down on the skinny table that slides in the thumping tube of death, instead of simply curling up catatonic in a corner of the room.  I know it's a ridiculous fear, but that's what a phobia is all about. Looking back now I want to slap myself for my silliness but in the moment, ugh, it's overwhelming.

 (I don't care what anyone says that is a stupidly small hole. 
"Damn radiologist has strapped me down so I can't make a break for it. Stop being nice you cow I want to hate you right now. Don't pat my hand and tell me I am "doing so well", I hate you and your niceness, evil torture woman".)
("I will not vomit.  I will not vomit.  I will not vomit.  There is no thumping tube of death behind my head. Wide open spaces. Wide open spaces. Screw the radioactive contrast, WHERE"S MY DAMN TEQUILA IV!!!!!")

I know the radiologist was speaking to me before I went in but it just became white noise.  Thankfully there was no head gear this time round, but there was the chest and neck plate which was strapped down to the table so I couldn't make a run for it.  As they slid me in my internal conversation went something along the lines of:

Oh God, oh God, oh God, oh God.  I'm going to die.  I'm going to die.  Shut up you stupid woman, you're not going to die.  Oh yes I am.  Oh yes I am.  Breathe woman.  Breathe.  Remember you used to teach relaxation techniques.  What techniques?  Oh God, I can't remember.  Don't look up. Don't look up.  The roof isn't an inch from my face.  It isn't.  It really isn't.  Isn't it?  Oh God it is!  Close your eyes stupid woman.  I'm going to throw up. I'm going to throw up.  Oh God it's getting smaller.  I can't breathe. Think happy thoughts.  Think happy thoughts.  I'm going to throw up.  Don't move.  If you move they have to start again.  No.  No. No. No. Oh my mouth is so dry.  There's no moisture left.  I'm going to dehydrate.  I'm going to die.  I'm going to die. 

"Your doing so well Michelle, this next section is 10 minutes". 


Then all of a sudden the table was moving and I was out.  I had escaped the jaws of the thumping tube of death and lived to tell the tale.  I was going to say I made it out unscathed but my extra 1,000 grey hairs tell a different story.  Luckily here is Aus such scans are bulk billed, so essentially free.  I feel blessed, especially knowing what friends go through in other countries.  Also I have since found out we are one of the few countries that gives you a top and pants, instead of a hideous drafty hospital gown.  Go Australia.  The land of wide open spaces and free pants in MRIs.

Thankfully the brilliant Kerri and I went and had coffee and lunch after to de-stress, before she drove me home.  Strangely, it was a fun day in it's own weird way.  Laughing with a friend who knows only too well the joys of the medical drill.  Chatting, going out to lunch.  Laughing some more.  If I take out the pee my pants fear and near death experience of the thumping tube of death, it was a great day out.

(See after the fact I can look all happy when pointing at the MRI sign)

Now I play the waiting game.  I have a copy of the films to look at, but not the official letter.  If it was a brain MRI I could read it in my sleep, unfortunately a neck venogram not so much.   So I will spend the three week interval between scan and cardio appointment, trying not to think about it and failing miserably.  I can't help but go back and look at the scan every couple of days.  I look at it and think "that's some weird shit man", but as to whether it is in the realms of normal variation on not (and I know from experience normal can look decidedly abnormal at times), I have to wait, and waiting sucks.  


The very impatient Michelle :)

In honour of my penile prosthetic query, Take A Walk on the Wild Side.