Some News. (not so good).

I have had so much stuff happening and my wireless internet has been dormant for over a week now so no blogs. Sorry! Although I doubt anyone is hanging.

It has been a VERY tough time for me lately as we can see by looking at my last entry.
I have been frustrated about the uncertainty of my health as it is affecting everything around me.

Life is NOT going the way I planned at all. (duh).

Since I first got ill in April 08, I have been patient, strong and humble, while the doctors do their best to find out how to return me to the way I was.

I need a doctor to really research and fight this thing for me. My own champion.

I spoke to my neurologist, and he said that I will be like this forever but it is manageable if the treatment is kept up.

Not good news but at least it allows me to move forward.

The way I see it, my illness is really rare, as things surface the information and knowledge will make its way to me.

There are all sorts of avenues to look at.

All is not lost.

Self Pity Babble.

The weather has been crazy lately and I haven't been able to access the Internet. I like rain and thunderstorms but this is like a cyclone.

Anyway I had to wait outside as the elements howled around me for a brief moment today, and I pondered about what to write.

I have had to ‘edit’ this severely, so it would be amiable and A – ok, it has been very therapeutic for me to focus on.

I don’t want people to forget that there is another whole side to this, the quiet destructive constant anger of feeling vulnerable & useless, of being a strong active father, of being a good hairstylist, of being an experienced musician, of telling others about my life experiences through writing, photography, music, hair, art, food ETC, how having life as you have known it for 32 years taken away or dramatically altered.

I, like most young healthy people, intended on finding financial comfort and success in order to share it and look after family and friends.
All of those dreams and affirmations of success seem dashed for me.

There is a tough economic climate right now and it’s a bad time to have superannuation or money tied up in a badly performing financial institution.
Things like a nice superannuation to retire with or a healthy investment are gone so I can forget making money with my own two hands and supporting my mum.
Instead my mum looks after me.

NOT at all what I had planned.

My Grandfather, on my mums side is 96, (god bless him), and is struggling to keep his independence, when I talk to him he pretends to understand me but catches very little of what I say.

Very Heartbreaking.

Can you imagine what my two children must think, let alone my 96 year old grandfather?

How a fit, strong, independent man can be struck down and have so much taken away?
It may be easier to blame it on a wreck of sorts or an overdose. (thankfully we can’t blame either of those).

I am 32 and struggling to keep my independence.

There is something VERY wrong with this picture.

I’m sorry if you read this for an amusing perspective of what’s happening for me.
This piece is far from amusing.

I face this oppression and negativity CONSTANTLY.
I wait in disbelief for some good news.
There must be SOME!.......No..... Again....

I can’t get angry and hit a punch bag normally, nor just hop on my drum kit and play normally to get tensions out, nor can I get out a good hearty cry because my stupid illness restricts me.
Frustrating is an understatement!

If you add on not being able to just go for a quick drive, constant financial stress, unknown health issues, a serious amount of energy just to wake up, people constantly worrying, CONSTANT setbacks it would wear you down and make it all seem futile too.

Now we are scratching the surface of what it is like to be in my shoes for 24 hours.

With all this bad luck you would have thought I killed a China man.

Go Boy!

My boy had B.M.X. racing, (Friday the 15th).

On the night of the 13th he had ‘gate practice’ and general track practice.

On the 14th he went to a private training clinic a young guy, Steve who raced in the Australian titles, took for the younger riders.
They learnt cornering, starting ETC.

And on the 15th, he raced, (they do 4 races), he started by coming 4th in the first 2 races, which was good but really frustrating as it was obvious he could go faster.
He had the pace to win but he was just happy to hang at the back of the pack because getting past the other riders meant stamina, focus and determination.
It was really frustrating me because I knew that he could be a front runner but he was letting defeat get the better of him.
His mum and I said what we could to encourage him but at the end of the day it would be up to him.

He did his next race and had more of a go and came in 3rd.

The final race, he got a good start.

I expected to see him at the back of the pack but he was right at the front getting amongst it vying for 1st place.
The 1st place rider got out in front and extended his lead and my boy held 2nd place firmly and another rider just caught him at the end.

I was so excited and proud.

The clinics, training and spending time there started paying off.

Most of all I was happy because he had seen and tasted the fruit of his effort.

I don’t know who was more stoked.
Me or him!

This is so so important to me because he won’t say it now but one day he will remember people supporting him.

To have at least one parent showing interest will have a positive effect in some way I figure.

It’s just so good to do things for my children.

Escapism comes in many forms for people.

I LOVE this. It’s very rewarding.

Pirate Philip is here to Tell you what Time it is!

I now have a business card to represent me, which is brilliant! My friend Tony, whom I just wrote about in the ‘Security’ piece, had them made. They are serious because they have all of my details but it also has the photo of me that you see on this site. Very tongue in cheek.
You may see these cards circulating.
I will always have one on me, kind of like American Express I’ll never leave home without them.

If you want some just holla me. (they will be a collecters item one day.....ha)..

Look out fashion and acting world!
I have my own comp card for all the wrong reasons.

Security.

A lot has happened this week. (as always in my world).

I don’t mean to lead people astray by writing about my trunk pain, I have had this since the end of August 2008, it is just becoming a bit later in the morning whereas it used to strike between 1am & 6am.
It doesn’t faze me it’s just another thing to put on the ever growing pile of bad things.

On Wednesday after my usual rigorous workout of all the therapies I went and caught up with a friend of mine that helped me start up this website actually.
He is a businessman, www.greenbizcheck.com , who is a bit of an environmental warrior and getting businesses to change their evil ways. (very slowly i’m sure. but very easy. we as people don’t like change much, so i take my hat off to he and his business partners dealing with people’s apathy).

When I was undiagnosed he, his wife and their little girl came to see me in hospital a lot, bringing me organic food, (his wife used to be a chef and makes delicious food), D.V.D.’s, photos, just following up on me in general.

They have a black standard poodle called Rocky that has a well groomed afro and always has a red bandana around his neck.
So cool.

He, among other things, is a writer and has published several books, I got some pointers off of him and took some fresh inspiration.
We exchanged notes.

He asked me how my book is coming along.
“It takes serious discipline, something I have very little of.” I said.
“Yes but it gets easier when you get on a roll.”

They have a very cute little girl that is one and a half and the last time I saw her she was a nine or ten month old baby, she has changed so much, a full mouth of teeth,
running around E.T.C.

They, like me and most fathers of daughters, will need to get a shotgun. To keep prospective boyfriends at bay.

Although I do have the eye patch to fall back on, it can be fairly intimidating.

New People.

For those new to this.
Thank You for taking the time to read my updates, please check it often I try to update it daily.
My condition causes me to fatigue from talking, so writing is a bit easier for me.
You might want to read the updates from the archives to gain knowledge on what has happened so far.
In particular: 17.11.08 & 25.11.08

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Will a Band Aid Suffice? (i don't think so)...

I have noticed the pain in my torso is getting later in the morning it is with me at 7am, 9am and well into the day.

I do my best to forget about it and get on with the day but for some reason if I lie down the pain shoots through my trunk leaving me breathless.

I figure that when I lie down my muscles and skeleton are relaxed and for some reason pain consumes me.
The reason behind my figuring this is that standing up seems to make it go away better than anything.

I can’t explain why it’s local to my trunk.
Maybe my body has formed immunity to the painkillers I take before I go to bed?

Its madness, sometimes I wake up in and the pain is so bad, it hurts ALL my insides and the only way to get to an upright position is to roll until I can do a sit up, (at least i’ll get rippled abs), to get up because moving my arms is so painful.

So I am walking around by now and the pain is ok now in my skeleton and muscles but my lungs, stomach ETC. are still hurting.

NOT a nice way to start the day.

A new symptom?

I really hope not.

Washed Away....Almost.

When I was in Port Douglas, (a little while ago), we went to a place called Mossman Gorge, it’s further north, on the border of the Daintree rainforest.
There is a river of crystal clear freshwater that comes from the rainforest.
It’s a popular swimming spot, but is also notoriously dangerous for flash flooding.

I was like a deer in headlights, mesmerized by the water, I had to try it. (you can’t not).

It was beautiful, clear water running over moss covered rocks surrounded by lush rainforest.
So I carefully made my way into the fresh crystal clear water.

As I got into the deeper water in the middle, the current got a hold of me and overpowered me.
I tried to stay calm.
I am normally VERY confident in water, but my illness has affected my ability to grasp not being able to swim using a slow current to get to calm water, to get a grip on something or simply to breathe.
I had to focus on one thing at a time, staying afloat, breathing, trying to get a foothold and trying to get to calmer water.

While trying to make it look like I was totally in control.

My sister was going to send some Scandinavian girls to my rescue, a nice touch, then a close family friend, (whose 60th birthday we had gone up for), gave me his hand and guided me to safer water saving me from where the river changes direction and gets drastically shallower.

Probably not funny to see or read.
Just another close call for me. (funny for me, but not funny to see or hear).
Another surreal story.

Racing Pictures.

Normal?

My son and I were cleaning his motocross bike yesterday afternoon and he said to me
“I bet I know what you would do if you suddenly became well again”, “tell me pal”? , I said.
“You would go for a drive in your car”,
“Your right, I would, I would go for a swim in the ocean, or a surf, drive around in my car seeing people and come pick you and your sister up from school again”!

I fantasize about this all the time.

CONSTANTLY.

For those that don’t get the infatuation with my car.
I will try and explain.

I am a racer, my father raced cars, boats, karts, anything with a motor. He loved.
That is in my blood.

I love going fast. Period.

When I turned 30 I bought myself a car.
A 2 litre Turbo, RenaultSPORT, Megane. (a very light, fast, sports car, that is very safe and can also double as practical transport).

I raced it against other cars at Queensland Raceway.

When I bought it most people had negative things to say. (expected).

But I was very happy with myself.

I sheepishly showed my father. (expecting a scolding).
He congratulated me.

Someone understood my madness.

Rolling in a fine car on a good road, motor sports, staying up all hours to see racing, board sports, B.M.X. is all a part of it.


This morning after my two children went to school.
Just briefly, the sun shone in a window, there was no sound, I closed my eyes and allowed my mind to feel normal.

Serenity.

When a Simple Day at the Funpark Can End in Tears.

There used to be a ride at an amusement park called Magic Mountain at Nobby Beach, Queensland, Australia.

There was one ride in particular that was a big, fast carousel with metal chairs with a wood bottom that were attached to the elevated spinning center thing with a flimsy chain.
This ride was on the edge of a cliff at Magic Mountain and spun around and around, sending you on an arc out over Nobby’s below.

If you pulled hard enough on the right chains holding your chair and twisted enough you could make you’re chair spin and unwind.
All sorts of things hit you while spinning wildly around, spit, puke, seagull poo, slushy, you name it.
All while being spun around.
A real lethal ride.

Great.

Few people would remember Magic Mountain in its glory days.

There were daily magic shows and there even used to be a castle there. (just imagine seeing a new skool castle on our strip of coastline as your flight banks to land at Gold Coast airport. Obscene. But cool).

It was closed down in the late 1980's, (probably because of the danger factor), left vacant for a long time, it soon became derelict, a place where people would go to practice their graffiti, have séances, smoke, drink, skip school ETC.

It was demolished to make way for apartments. (no surprise there)…

I don’t know why I felt compelled to write this.

Totally irrelevant.
(some g.c. history)?

Bring back Magic Mountain!
Local folklore.