Monday, March 28, 2011

When life gives you lemons...Part 3 at last!

The rest of Christmas day came and went in a blur of tests and visitors and that night I happily fell asleep and slept like an absolute log until sunrise. Shortly after the breakfast trolley had rattled its way around the ward I was visited by the "theres no tumor" doctor and the consultant neurologist of the ward, Dr Blacker. They each pulled up a chair and sat themselves down all the while asking how I was feeling etc, the usual chitchat of doctors. Dr Blacker then wanted to go over the MRI and Lumbre Puncture results with me and explained that the findings picked up in both were that of what they usually saw in people with Multiple Sclerosis. He went on to explain this, that and the other and I sat there totally oblivious to what they were, in the nicest possible way, trying to tell me. Out of the whole "the findings picked up in both were that of what they usually saw in people with Multiple Sclerosis" sentence, the word my brain had decided to focus on was "usually". I can't really remember when in the conversation the penny finally dropped for me but I remember there being a pause, at which point I said "so are you saying I have Multiple Sclerosis?" When I received an affirmative answer I swear the whole world just stopped momentarily. There was no sound, I could not speak, I could barely breath. Then came the tears. I cried whilst the doctors sat there in uncomfortable silence. I looked up to see Dan and Kye standing in the doorway, the smile on Dans face instantly replaced with a look of concern. Quickly wiping away my tears I patted my lap and beckoned Kye over to come sit with me. Dr Blacker led Dan out of the room to explain what had just happened. I sat holding Kye while he happily chatted away about his Christmas presents and I pretended for all the world that there was nothing wrong, that my world had not just been turned upside down. Dan reappeared in the doorway a short time later looking shocked, I could tell he had been crying and had also wiped away the tears, for Kyes sake but I think mostly for mine. I was officially diagnosed with Multiple Sclerosis on the 25th December 2003. My sweet doctors chose not to tell me until the next day. That afternoon I was started on IV steroids to reduce the inflammed areas in my brain and spine as quickly as possible. The MRI had picked up 8 areas in my brain and 3 to my spine. The steroids seemed to work quite quickly and within a couple of days the complete numbness in my legs was replaced by pins and needles. This was a good thing. I could feel again. In all I spent 6 days in hospital and was home just in time for New Years Eve. It took around 6 weeks but I made an almost complete recovery with some permanent residual weakness in my right leg which I have to this day. It's my lazy leg and foot, the kind of foot that will trip over a blade of grass! I've been lucky...very lucky and apart from living with mainly sensory symptoms like pins and needles, tingles, occasional numbness and fatigue I have not had a major relapse since diagnosis. I do still live with uncertainty however, MS is a buggar like that, it's an unpredictable disease with no known cause and no cure although there are plenty of drugs to help manage the disease now as compared with just 20 years ago. Twice as many women as men are affected and it hits mainly between the ages of 20 and 40 years of age. My diagnosis changed my life in many positive ways, many more positive ways than negative (there are a few!) but it truly helped me to sift through the important and not so important stuff in life, it helped me to let go of some baggage but also to confront and deal with other deeply buried emotional stuff. That is still a work in progress. I am more resiliant and more compassionate and much more patient than I was before MS. Not my ideal Christmas gift but in many ways it has been just that...a gift.

Friday, December 31, 2010

When life gives you lemons Part 2

A gentle knock on my hospital room door announced the arrival of 5 or 6 of the "white coat" brigade. Okey dokey, now I was really scared. Why would I, little ole' me, need to be seen by so many doctors? This was starting to look a little too serious for my liking. My stomach started to churn.

One of the doctors stepped forward introducing himself as the consultant neurologist on duty that day. I swear to God his introduction nearly made me throw up. I now understood that I was on the neurology ward, the "going's on" of the night before becoming oh so crystal clear.

I sat on my bed and tried to answer his questions without falling apart emotionally. There was the distracting whispering back and forth between the other attending doctors after each of my answers and there seemed to be a look of growing concern on the face of the neurologist. I was asked once again to perform a number of physical tasks, failing miserably at each and by then I could no longer hold back the tears. Understatement really. I was a sobbing, crying mess.

I didn't ask what the neurologist thought. I don't think I wanted to know or could handle knowing at that point. I was just plain scared.

An hour or so later an orderly arrived to take me away for some tests. A chest x-ray to begin with apparently. I don't exactly know why but this freaked me out. Totally. What the hell did a chest x-ray have to do with anything? What were they looking for? I lay on the bed, in the lift and vomited from pure fear. I vomited until I was dry retching and did not care who was there to see or hear it. I have never been that scared in my whole life, before or since. I had now convinced myself that "they" knew what was wrong, that "they" knew I was dying and the chest x-ray would just be confirmation of my demise, confirmation of what "they" already knew.

The whole x-ray thing was, as expected by all concerned, an ordeal. I had no sense of balance, had virtually no feeling in my legs and was trying to recover from a 10 minute bout of uncontrollable vomiting, retching and crying. I was scared out of my mind but yet had to stand up, stand still and hold my breath while the x-rays were taken.

I'd always thought I would be one of those stoic souls, one of those people that when faced with their own mortality would quietly go about their business without complaint or fear. Yeah right!
Apologies to the radiology staff and especially to the poor orderly left mopping up my puke...on Christmas Eve!

I was not back in my room long before once again I was taken for tests. An MRI this time.
I'd seen these tunnel like machines on many a medical show but had no idea how narrow the "tunnel" actually was. I remember saying something like "well that doesn't look too claustrophobic haha" when I entered the room but had no idea what sort of grief I was about to cause the MRI staff too.

Head first into the machine I made it about half way in before having a full on claustrophobic panic attack. I've never really liked small spaces but had no idea just how much until I had my first MRI experience. This was something else entirely.
I was pulled out and tried going in feet first instead. Nope.
I was put back in head first and was given an oxygen tube to blow cool air on my face. Nope.
I'm going to sound like a right royal pain in the arse again but no matter what they tried I just could not go into that machine. Once again I was a hysterical mess and now not only did I feel terrified, I felt guilty and was also bitterly disappointed in myself. I felt I was messing everyone around, wasting their time and now it also meant that I would not be going home. It was Christmas Eve and I would not be with my family.

Once back in my room it was confirmed that I would not be going home. An MRI by general anesthetic had been booked for the following morning - Christmas day. My symptoms were progressing at a rapid rate of knots and the MRI was crucial for both diagnosis and treatment.

By that evening my speech had begun to slur. I was slurring like a drunk but without the fun bit! I found I could not concentrate for long and would loose my train of thought easily and also began having difficulty finding the right word to use in a sentence. I felt like I was loosing my marbles!

My family spent Chistmas Eve with me and I cried for hours after they left. I lay in the dark that night alternating between crying and praying my heart out to a God I hadn't prayed to since I was a kid. A couple of years beforehand the mother of my husbands friend had been diagnosed with Motor Neurone Disease and as I lay there it struck me that maybe this is what I had and that absolutely pertrified me. I prayed and prayed and I wheeled and dealed with a God I no longer knew, that if He could spare me from MND I would accept anything else...anything else...just as long as I wasn't going to die. It was a long, long night.

Christmas morning finally dawned and once again I was wheeled down to the MRI department. This was it. When I awoke I would know my fate. I felt sick. Again!

"There's no tumor" were the first words I heard upon awakening. This was not said to me but in passing from the registrar neurologist whom I'd previously met to someone else in the room. He had a big smile on his face so this was good news. Very good news.

I was actually on a high once back in my room. A natural high from sheer relief that the MRI was actually over and that the news was seemingly very good. I relaxed for the first time in days.

The "there's no tumor" doctor came to visit me a little later on and explained that the test showed some little areas of inflammation on my brain and spine but not to be concerned, it was treatable and that no, I was not dying (one of my first questions!). This WAS excellent news. Then he informed me that he would be performing a lumbar puncture as my cerebospinal fluid needed to be tested. All par for the course apparently! The idea of having a needle shoved into my spine and having CSF drawn out while I was awake did not thrill me to bits but I really didn't care anymore due simply to the absolute relief I felt that I was not going to die.

to be continued...

Monday, November 29, 2010

When life gives you lemons... Part 1

About 9 or 10 years ago I noticed something very strange would happen each time I took Kye out for a walk.

The area we lived in at the time was very "hilly", so pushing a stroller complete with bag full of all the bit's and bob's you need for a toddler emergency was no mean feat.

I noticed that at about 15 minutes into the walk my little toe on my right foot would go numb, completely numb. Once we were home and I'd had the chance to sit down, cool down and rest for awhile the numbness would dissipate. I really thought that my runners were to blame and swore never to buy cheapies again.

Over the next 2 or 3 years I had quite a few weird little "goings on" like this. There was the time when my right leg had constant pins and needles from my knee down for almost 3 weeks. Then it went away. My right shoulder blade went completely numb too which I was unaware of until one night I asked hubbie if he could scratch an itch on my back I couldn't quite reach. He was scratching away (Heavenly!) and once he reached my shoulder blade the scratching sensation suddenly changed. I couldn't feel it. I could feel the pressure of his finger tips but that was it. The only way to really describe it is to think what it's like when your leg, arm, whatever, goes to sleep, that complete numbness you get just before the pins and needles kick in, that's what it was like.

I saw my GP on quite a few occasions, usually something to do with Kye and would casually mention these weird little incidents I was having. Because I'd had a few back problems over the years he would always put it down to that, pinched nerves or whatever and would look at me unsympathetically and blame my "problems" on being overweight and unfit. It was my fault.

2 days before Christmas in 2003 hubby and I headed out for a walk with Kye. It was a stinking hot day but we thought if we went early enough the play area at the park would be shaded by the huge Gum trees. Kye could have a little fun before the heat of the day got too much.

In the days preceeding this I'd noticed that the numbness in my little right toe had not gone away, it in fact was spreading up and over my foot. By the time we made it to the park I was feeling slightly odd, a bit spacey, not quite with it. I sat myself down under the shade of the trees while watching hubby and Kye play. I was rubbing my foot with my hand and noticed that this numbness had started to creep up my leg. I was now worried. This was not normal, this wasn't going away, this was getting worse.

I phoned my Mum (as you do) when we got home and told her what was going on. She was immediately concerned and told me to make an appointment with my GP for that day. If I didn't do it, she would. She was going to phone me back in 5 minutes to make sure the appointment had been made. So I made it. If I've learnt anything over the years it's not to argue with my Mother, alway's a losing battle! My usual GP was not available however, so the appointment was made to see another, one I had not seen before.

My appointment wasn't until about 5.30pm so we had the day to kill and so we headed off to the local outdoor swimming pool for a dip. As I lowered my legs into the cool water I realised that my left leg felt the sensation of the water for what it was...cold. My right lower leg seemed to think that the water was hot. I was instantly scared and amazed at the same time.

I headed off to the doctor's later that day, the numbness now having slowly crept right up to my knee. I was feeling nervous and also a bit silly. What if this is my fault? After all, I'm overweight and unfit.

As I drove I realised that my left foot was not fully co-operating on the clutch whilst changing gears. Every time I had to hold my foot down on the clutch it would go into, what I can only describe as a spasm. Thank God the medical centre was only 5 minutes drive away.

The wait wasn't long and the man who was about to become my GP for life (God bless his little socks) called my name. I explained what had been going on and he listened intently.
I described the drive there and my misbehaving foot and he had me hop up onto the exam' bed. He pressed his whole hand against the bottom of each of my feet in turn. Each time he did so both would go into full spasm. He then explained that he was about to phone through to the emergency department of Sir Charles Gardner Hospital to tell them to expect me. He spoke directly to the Head of that department, explaining his findings and my history, age, etc and all was arranged. I was to go straight home, grab my hubby, arrange a baby sitter and be driven straight to the hospital. Bloody Hell, I remember thinking, it's from one extreme to the other in this medical centre. He explained that when I got to the hospital they would more than likely run tests to see if I a. had a tumor b. had MS or c. I was in shock by this stage.

Stunned, I drove home. By the time I had explained my head spinner of a doctor's appointment to Dan we were both convinced that this doctor was nuts and completely overreacting. Feeling slightly calmer I convinced myself that my back was indeed the culprit. Maybe a nerve was trapped, that's what was causing all this mayhem. Mum arrived to take care of Josh and Kye and we were off.

Into the emergency department waiting room which was, as they usually are, a pretty busy place. It didn't take long to be called as they were expecting me (thanks doc) and through we the other side! I was given a bed and told to wait, someone would be with me soon.

It was around 7pm by this stage. I'd being seen by this one and that one, going over my symptoms again and again. I was poked (literally) with sharp little needles to gauge the numbness that had now crept half way up my thigh and was starting on my left foot. I performed all sorts of balance tests, with eyes open and eyes closed and was soon to discover that I could not stand up with my eyes closed without falling over.

At around 11.30pm was told I was being admitted. They needed to perform an MRI but could not do so until the next day. There had been a car accident involving multiple people, the MRI machine was working overtime . Dan went home and I reluctantly stayed. Tomorrow is Christmas Eve I thought, it'll be over and done with just in the nick of time at least.
I was transferred to another bed and wheeled down a million corridors and into a lift up to God know's what ward. I was settled in by a lovely nurse and that was that. I was in hospital and it was now officially Christmas Eve and now I was scared, very scared.

I spent a sleepless night listening to other patients of this ward screaming out, yelling and moaning in what sounded to me like fear and pain which only intensified my own fear. I eventually cried myself into a fitful sleep as the sun rose filling my room with welcoming daylight.
The clitter clatter of the breakfast trolley woke me and I sat myself up on the edge of the bed still in disbelief from the horrors of the night before. "Where the hell am I?" I thought.

I gently placed my feet on the floor soon realising that I felt nothing at all when I did so. The rough carpet under my feet did not compute with my brain. I stood up and took a step forward, then another and realised with shock that I could not properly control what my legs were doing. It felt like there were oranges inside my calf's, they were hard and stiff, my muscles were fully contracted and would not relax, my gait was clumsy and my balance was so off I needed to hold on to anything and everything so as not to fall over on my way to the bathroom.

Grateful just to make it to the loo without going arse up I sat there in total disbelief. What was happening to me? Jesus Christ, what if I was dying? By now the numbness had made it's way up waist high on my right side and was half way up my thigh on the left side. I could not feel almost half of my body.

I was about to find out that my bladder was also affected, urination was stop, start, stop, start, stop, start, stop, start.
My God, I couldn't even pee!

To be continued...

Friday, November 26, 2010

So what DO we do all day?

This used to be our home office area haha - Kye and I have slowly but surely taken over!

When we first started home schooling I didn't have a bloody clue what to do to be honest. I registered my intent to home school Kye with the Education Department, all was approved and that was you go then, educate your child, teach him from these 8 areas of learning - Maths, English, LOTE, Science, PE, Society and Environment, The Arts and Technology and Enterprise and we'll see you next year... some time...good luck, see ya later!

What are we doing today? - So Kye know's what's going on and when and to remind us which bloody day of the week it is!

The Happy Box - This is full of little notes just for Kye, from me, Dan, Kye's brother Josh and his Nani telling him how much he is loved and exactly why we each think he is so wonderful.

The first couple of weeks were spent figuring out just where Kye was at. How far behind was he? What were his strengths? What scared him? How could I teach him in a way that built his broken little spirit way, way up again? How could I help him to truly believe in himself like he used to before his self esteem and trust in others was shattered to pieces?

Used to be my bookcase :)

We've come a long, long way since then.

We like bright, happy colours.

Makes life more interesting don't ya think?

I wish my school books had looked like this.

Here we are 15 months later, cruising merrily along, the fear of doing the wrong thing by the Education Department is long gone and our learning is now interest based, we do it our way, the way that works and has allowed Kye to shine again and laugh again and to slowly, slowly believe that he is worthy simply because he is here. He is loved and he is safe and he is learning successfully, the fear of failure having been removed.

The Simpsons
Each square has an mini biography of the character on the front.
This was a lot of fun. The map in the centre is Springfield showing where all the characters live.

Taking care of Kye - This folder deals with emotional health. So so important and so so overlooked in mainstream schooling. What could possibly be more important?

There are no tests to "prove" that he has "memorised" something, we simply do not move on to the next thing until he really gets it, really understands how we came to a particular answer (think Maths here).

New York - Kye's nut's about the place!

There's no competitive pressure and there is certainly no belittling in our classroom.

Windows to his Soul

Ain't this the truth. I love this. Could be the next tattoo!

My precious boy

We simply try to have fun whilst learning something new, things that are interesting to us, places we want to go, experiments we'd like to try, thing's we'd like to have a go at making, photos we want to take, movies we want to make, interesting show's we'd like to watch, books we'd like to read etc. We are still learning from all 8 areas of the curriculum but are doing it "our way".

Now he shines. Now he flys. Now he soars!

Thursday, November 25, 2010

Luceat lux vestra

I've pretty much loved drawing for as long as I can remember and since the age of about 13 I've been fasinated with drawing tattoo designs and cool album covers.

I spent hours locked away in my bedroom, music cranked, surrounded by pencils, charcoal, chalk and cartridge paper and I would draw for hours, totally absorbed and lost in my own little world of LOUD music and pencil shavings.

For me, without really knowing it then, it was the ultimate in Zen and helped me escape from many a teenage angst for awhile. I still find that, when I take the time to put pencil to paper. Hours can go by and feel like only 5 minutes and none of that time is spent thinking about anything else other than what I'm doing.

I've never attended any art classes apart from the obligatory lessons through my school years but it is something that crosses my mind from time to time, like a gentle little voice reminding me to go do the very thing that I love to do and be taught by someone that loves it too.

Anyway, before we left for Bali I was secretly working up the nerve to finally go and get "inked" while we were there. How could I not ever get a tattoo when they have held such fasination for so long and anyway, getting "inked" was on my 101 things I have to do before I pop my clogs list and as they say I could always get run over by a bus tomorrow!

I'd done my research and had come across a cool looking little shop in Sanur with a great reputation, all very clean and sterile and because I happen to be a fan of Kat Von D's work, the shops name jumped out at me too...Sanur Ink! That's the place for me I thought!

Apel "The Master" outside his Studio

Me trying to be casual and as cool as a cucumber "pre-ink" when I was really about to loose my lunch over Apels funky chequer board floor.

Mid ink - taken with much amusement by Kye

Nearly done


Let Your Light Shine

AND it didn't hurt a bit!

Not even a teeny tiny bit.

I wouldn't even say that the feeling was uncomfortable.

I can't wait to get back there (hopefully in March next year) to get it finished off with some colour in the way 0f pretty little Frangipanis, to remind me always to let my light shine.

Wednesday, November 24, 2010

BALI - October 2010

So, in October this year we headed off to Bali, our first family holiday EVER!

To say I was a tad excited would be an understatement, it was only for 6 days but those 6 days were truly the most relaxing, peaceful and happy ones I've had in a long time. Well overdue!

The pic above is me having my feet and legs nibbled by, what looked to me like the little algae eaters I used to have in my fish tank. Bit of a weird sensation but strangely addictive. Kye LOVED it and for a kid with a whole heap of sensory issues I found this strange but love it he did and was nibbled each of the 6 days we were there, sometimes twice a day!

There was of course plenty of floating around in the hotel pool and lazing on sunbeds, reading books and getting burnt to a crisp whilst sipping on obligatory ice cold Bintangs.

Water Bom Park is a must when you go to Bali, whether you go with kids or not and we used up 2 of our 6 days there. We hired our own private gazebo both times and lazed about in the shade of the thatched roof when we needed a break from all the stair climbing. I'll tell ya, thighs of steel I had by the end of the first day. When you hire the gazebo you also have lunch, drinks, whatever you like delivered to you. I felt like Royalty for the day.

Some of the rides are seriously scary and one in particular none of us were brave enough to go on but there's always next time... This place was just brilliant and you can't wipe the big cheesy grin off your face the whole day. It was the best fun.

The Boomerang

Lazy River

The Climax - the guy in the tube is going "up"! This was a seriously scary ride.

Kye in the Sky!

More to come...

Tuesday, November 23, 2010

More snippets of 2010

More snippets of 2010

Me and Josh with Dave from The Umbilical Brothers

In depth conversation about the finer points of comedy with Shane from The Umbies

Kye and Shane

If you ever get the opportunity to go and see these guy's...GO SEE THEM! That night was definately one of the highlights of 2010 for me and that particular night was being filmed for their next DVD...might get my 15 minutes of fame yet!