The only way is up.

Well turns out my gastro was so atypical, it's not even gastro.  (Sigh).  Yep, once more even the vaguest trace of normal slips through my fingers.   It seems that Bob has dreams of world domination and my gut is Poland.  Joys.

Who knew there would be a time in my life where I would wish I had a bunch of rancid bugs having a rave in my lower imtestine?  Not me.  But there you go.  The fun times just never end.

So yet again I am discussing my bowel habits with various members of the medical profession.  Yet again there are more specialist appointments to be organised.  Yet again there are more tests.

It seems that uberneuro was right about the whole progressive thing.  Only by 'progressive' it appears he meant 'faster than a speeding bullet'.

So now I have more tablets to take.  More time to waste.  More checking in with my doctors to discuss my poo in great detail.  Daily conversations about the the consistency, shape and odour of my excretions.  Something to look forward to I'm sure.  I know they're just as excited as I am.  At least they get paid for the pleasure.

So my plan for now is watching re-runs of 30 Rock whilst sucking down Hydrolite popsicles, which taste suspiciously like Tang.  Luckily the new tabs also make you sleepy, BONUS!  Given the first one left me comatosed on the couch for a few hours, only to wake up to Mr G and the eldest rug rat eating dinner next to me, it looks like a snoozefest is on the cards for the next few days.

But really, if things don't pick up soon I may have to break out the big guns, otherwise known as, 80's Power Ballads.   So if you hear the first strains of I Want to Know What Love Is, or even worse, I've Never Been To Me, you'll know that the shit really has hit the fan.

Thanks to everyone for their well wishes, they are greatly appreciated.  I'm sending you all big cyber hugs and air kisses.

Michelle

Update:  Always read the small print: "medication may lower blood pressure and cause rapid heart beat".  So shortly after taking its already:

Yep feeling better already.  #@!$%^&*%$#@!!

Okay I may just need one hit of 80s magic to make it through the day.  

Uberneuro: The good, the bad, and the new party trick.

After much trepidation, nausea, and frequent pee stops, I managed to get to, and survive, my visit to the uberneuro.  I don't mind admitting I was a wee bit worried in the hours, okay days, preceding my appointment.  Would he think I was a nutter?  Would he think there was nothing wrong?  Would he find something terribly, terribly wrong?  Would he be the wearer of a colourful bow tie (the international symbol for "I'm a God complex arsehole.  All shall bow to my awesomeness")?  These are the things that go through your mind before the big appointments.

It's ridiculous that after all this time I still worry that I might end up with the nutter tag.  I know I have a genuine medical condition.  I've had it verified by a number of specialists.  I have the hard data in the reports.  Yet still that little voice in the back of my mind says, "it's all in your head, loser".  Logic and fact be damned. It's the same little voice that took up residence after my horrendous and soul destruction visit to my local condescending and incompetent General Physician when I first became sick.  Every time I think I have finally succeeded in getting rid of that voice, it raises its ugly little head once more.  The King Cockroach of the little voices in my mind.

That's one of the joys of having an invisible and unknown illness.  What others can't see they doubt.  Then if you're especially lucky, they are kind enough to share their doubt with you.  One doubt filled comment.  One judgmental look, and all your confidence crumbles.  Maybe they are right?  Maybe it is just all in my head?  I'm not quite sure what I'm supposed to look like to prove I'm ill, but I still feel like I should somehow attempt to look the part.  I like to pride myself on having a pretty good attitude about this whole illness business, but times like this it all comes flooding back and all those insecurities take over.

Two and half hours after I walked into the office in the dingy old section of the hospital, I finally had answers.  All the months of waiting actually paid off.  That doesn't happen very often.  So many times I have waited and waited only to have my piss poor health confirmed, be told I was unique, that they have no idea why, and that there were no treatments to offer me.  Time well spent, not.  Always followed by a bill that required the offering of my first born, or left kidney to pay.

It was the longest and most thorough neurological appointment I have ever had.  I was poked and prodded, and even bared my naked bum to his face (thankfully no inappropriate flatulence, though for some reason I felt a sudden desperate need to vacate my gasses as soon as I dropped my undies).

I was taken aback by the fact he actually asked my opinion and made jokes.  Who was this man with the bedside manner?  Surely he cannot be a member of the neurological profession?  The words 'professor' and 'neurology' are never found in the same sentence as 'personality' and 'humour'.  Well, unless the words 'lack of' are involved.  He was a rare breed indeed.

Mr Grumpy found great humour in my body's incompetence, chuckling away to himself through out.  Is it one point or two? Is it hot or is it cold?  Can you feel this pin I am sticking in your stomach?  The physical equivalent of a Mensa test.  Unfortunately, Mensa will not be calling anytime soon.  I fear my body is not even fit to carry their pocket protectors.  In fact, I'm pretty sure that the nerds would give me a swirly, and laugh derisively at my inability to identify prime numbers.  I did find out that my right-side is far more intelligent than my left, which may have an exciting career ahead as a speed hump.

So what does it all mean?  My neuropathy is spreading, and spreading faster than I thought.  I think back to early 2006 and I was relatively well.  Then my ANS went into melt down.  A few years ago the toes on my right foot started burning.  Then it was temperature sensation, pin prick, reflexes, burning my hands, the list goes on and on.  (I've written about my various progressing ANS symptoms so I wont bore you with those here).  Now I am uncoordinated and weak as a new born kitten.  Fun times.  Most surprisingly I now have a large patch of my stomach you can stick a pin in, and I simply don't feel it.

He confirmed that my version of Bob is not related to a virus as first thought, but rather an underlying genetic neuropathy.  This isn't really surprising.  I've never brought into the virus argument, it just never fit with what I was experiencing and always felt like a red herring.  He agreed and said my presentation and progression were not reflective of a viral aetiology.  It was nice to finally get an answer to 'why'.  There's something reassuring about an answer, even if that answer is progressively dying nerves and all that means for the future.  It was equally nice to have things like MSA and a variety of Parkinsonian disorders ruled out.

In the world of possible answers, it's not really the best answer I could have received, that would have been Bob is due to A, if you take B you will be cured.  But it's also not the worst.  It's an answer and frankly, that's a relief.  Uncertainty is a far worse diagnosis.  Uncertainty is a shadow being, menacing, and waiting to pounce.  It leaves you floundering, not knowing where to go or what to expect.  A diagnosis, any diagnosis gives you legitimacy.  Legitimacy in the eyes of others, and more importantly, for yourself.  It also gives you something tangible to deal with, and that is priceless.

I will admit to a moment of "why couldn't it be a tumour.  They could cut that out", because that's how your mind works when the news you get isn't all beer and skittles.  A tumour becomes a viable and more preferable option in comparison to diagnoses that involve the words 'progressive' and 'nerve death'.  Sounds crazy when you say it aloud and I know that many would be shocked, but crazy is order of the day over logic in these situations.

I still have more tests ahead to clarify if I am dealing with crap or super crap, not that it will change my treatment options greatly.  It's all still symptom management rather than treatment.  The dead nerves will continue to be dead nerves and more will join the party.  And really, the last thing I need is some form of reanimated zombie nerve roaming around my body.  I've watched enough bad scifi to know that kind of thing never works out well.

At any rate there is no one to do the biopsies I need done until next year, so my plan is just to sit back and not worry about the possibilities until they crop up.  I figure, it is what it is, and I can't do anything about it so I'm not going to waste my time worrying about 'what ifs?'.

Besides, I now have a new party trick, the human pin cushion.  Maybe I could try out for The Dudesons as the new human dart board, or join one of those freak shows lying on a bed of needles.  Oh the possibilities.

(Though I'm not sure the outfit goes with my new found sense of style)

Cheers
Michelle :)

Time to sing my favourite song and break out that old bottle of butterscotch schnapps.

The Ministry of Silly Walks

Walking shouldn't be hard, should it?  If my eldest could walk at 9mths, surely I should be able to walk with ease at 37.  Mind you, I am walking like he was at 9mths.  Furniture and wall walking my way through the world.  It's a good look.  What is cute and gives rises to "oohs" and "ahhs" and "who's a clever boy" at 9mths, is not met with the same enthusiasm by the general public at age 37.  Instead I am the recipient of 'those' looks.  And little whispered comments, which seem to include the word 'drunk' quite frequently.  If only, judgmental old biddies.  If only.

These past few weeks I have been walking like a drunken sailor, minus the barrel of rum in my belly.  I have found that my gait is getting wider, what in the old work days I would have thought of as a classic alcoholic ataxia.  Only I have had hardly enough alcohol to pickle an olive, let alone my cerebellum.  My muscles have been uncooperative little buggers, and my weakness increasing.  They simply feel 'wrong' when I walk. 

Can't wait to give Uberneuro that descriptor when I see him in June.  A patient's inability to explain their symptoms was always a frustration for both parties, back in my work days.  I would hand them a sheet of descriptors to pick from when they were finding it particularly difficult. Maybe I should see if I can find it again, to use for myself. Damn, that's a depressing thought.

I don't really know why it's come to a head lately.  Maybe it's just the effects of my recent back issues tipping things over the edge.  I'm not really sure.  Given that my pulse pressure (systolic minus diastolic) has also been in the toilet I think Bob is getting a bit frisky in his old age.  When 40 is optimal, 30 is considered okay, 20 is considered shock, and all I can muster is a pissy 9, well it's not a particularly good situation.  It could just be a phase, and I'm truly hoping that's the case.  All jokes aside, the past month or so has really been hard and I've had about enough.

(Was lying down at the time I recorded this)

My neuro symptoms have been getting worse overall.  I tick and shake, and have muscle fasciculations up the wahzoo.  Managed to burn myself on the stove again thanks to the reduced feeling in my hands (good old SNAFU), which is always fun.  I asked my youngest if I had burnt my finger and he rubbed it, taking off a layer of skin.  Apparently what looked like flour was a wee bit of charred skin and we both had a bit of an "oh shit" moment.  

Luckily I finally have my appointment date so fingers crossed Uberneuro will have a clue.  I used to take classes with him back in the day so I am confident he's the go-to-guy when no one else has a clue.  But seeing someone I knew on a more professional basis will be uncomfortable to say the least.  I know his current Neuropsychologist quite well.  I was on our state professional board with her, so I'm really hoping I don't bump into her.   It's moments like those that I feel really self-conscious and it all gets a bit confronting. Ugh. That's all way to serious and depressing.  Will now play my happy song in my head and settle down to a nice bowl of denial.

I have finally taken the plunge this past week, and am now the less-than-proud owner of a walking stick.  I have put it off for a very long time, despite having balance issues on and off for quite a while (okay couple of years).  I knew I needed one, but my mind screamed "NOOOOOOOOO........" every time I saw one.  Now before anyone starts saying, "well you have to be practical Michelle", you should also know I will beat you to a pulp with my stick if you even start to go there.

People need to realise that:

Logic and Chronic Illness are not friends.  

They're not even casual acquaintances.  

In fact, if Chronic Illness was to serve Logic a drink it'd probably spit in the glass and smirk, whilst they watched them drink.

It's a mind space that you are either in, or you're not.  There's not a lot of grey.  Logically I have known that I needed some form of walking aide for well over a year.  But every fibre of my body has rebelled against the idea. 

I had a similar predicament with the shower chair.  I have a shower chair now, and I love it.  It means I can shower without face planting.  It means I can have the water above tepid, and stay in for longer than a nanosecond.  And it sure as hell beats sitting in the bottom of my manky shower.  All good things.  But the lead up to getting a shower chair was not paved with lollipops, kittens and rationality.  

Buying a shower chair represented tangible proof that I was broken.  Ptooey!  I spit on 'broken'.  "That's not me," I shouted whilst raising my fist in the air in defiance.  Not that anyone was listening.  Except my dogs, and they just looked confused.  It certainly didn't help that they were sold in the 'Aged Care' section of the store.  After a long period of denial, ranting, head shaking from a long suffering Mr Grumpy, and traumatising my dogs, I purchased a shower chair.  There may have been some pouting and swearing involved.  I may also have forcefully thrown it at my shower, rather than going for gentle placement. Whatever.

I still remember sitting down for the first time and thinking to myself,

"I'll show them.  It wont make one bit of difference.  I'll be right and they'll be wrong.  And I'll say see, see, SEEEEEEEEEE I was right, losers".   

But damn it.  It was better.  And easier.  And they were right.  And I was wrong.  Bastards.   See the extreme lack of logic involved?  I think I should be studied.  Or at least better medicated.

The reality is that I am now disabled.  And at some level I acknowledge that.  But there is a very large irrational part of me that continues to rally against that label. I spent my professional life, working in neurorehabilitation.  I helped to plan ways to maximise independence, including the use of lifestyle aides like shower chairs.  I know the theory.  I've seen it in practice.  And yet I still rally against it all.  As I said, logic is not my friend.

The acquisition of a walking stick has fallen into the same category of rabid illogical thought processes.  No doubt there will be many other items that will flail beneath the sword of irrationality, before I finally reach the point of acceptance and pull my head out of my own arse and acquiesce.

I am still on the lookout for a groovy walking stick, is that an oxymoron?  I'm not sure.  I really want one of those classy silver handled, black ones that look like they should be in an Agatha Christie movie.  But will have to save up my pennies.  I do feel as though I should be wearing a top hat and a monocle when I walk with my current stick.  And saying things like "tally ho", or "jolly good show old chap".  Or at least break into a song and dance routine complete with jazz hands and spirit fingers.  But baby steps first.  Coordinating, two legs, a stick, a handbag and breathing is still troublesome at present. 

(It's grannified but it works)

I have used my stick as a light sabre, complete with sound effects.  And as an improvised guitar whilst listening to AC/DC.  It has also proven a great tool to poke cheeky children.

I did see a fantastic sword cane (think Crispin Glover's, The Thin Man in Charlies' Angels)  which I want very badly.  That way I can stab people who tell me it's greatI finally purchased a walking stick.  And muggers beware, this disabled, uncoordinated chick would take you out.  It's all very James Bond.  Maybe I can also get one of those bowler that cuts off peoples heads, like Oddjob's in Goldfinger.  Now there's an idea.  I think I'm finally starting to come round to this whole walking stick idea.

Cheers

The dapper Michelle ;)

The Ministry of Silly Walks, Monty Python (1970)