Buon Natale!

I hope wherever you are, you had a good Christmas and the fat old guy in the red suit that breaks into your home was kind.

Christmas here on the Gold Coast in Australia this year was fine and hot. My family and i eat fresh seafood and cold foods prepared Christmas eve. (not very traditional by international standards but then again Santa does wear boardshorts and carries a surfboard).

My health seems much the same, a doctor put me on a new medication called VITROSIL which makes me REALLY drowsy.
I am meant to take one tablet in the morning and one at night, I rang the Doctor and told him I had a bad reaction to the medication as it really made me useless, unfortunately he said it is a low dose and to keep taking it just at night.
I will get used to it eventually.
Then take it in the morning and then a stronger dose.
I really hope so because it is really affecting me and my ability.
What's left of it.

But I didn't let that stop me on Christmas day. The children had a good time and we went in the ocean for a swim.
A neighbour lent me surfboard and I paddled it out the back. And caught a wave, (laying down), it felt really good to experience the sensation of surfing again.
My little Boy came on the surfboard too and we both caught a wave. Which he really loved.

The Day was so good I went swimming in the ocean 2 more times.
Normally on Christmas I am walking down to the beach with a beer in one hand and my surfboard in the other.

I did my best to make this year no different.

Merry Christmas

What a time of year.
Gifts, food, drink, photo's, unexpected visits, making contact with people, family, music, love in some form and general craziness

I, as I'm sure with you all, have been busy preparing some of the above. (i love it, but i personally can't wait for it to be over).

I hope Santa brings you and your family some goodies this Christmas and no matter how busy it gets please remember to take it all in and enjoy it!

Friday I'm in Love.

Due to Internet issues and life in general I have not updated for a while.
A lot happened this week, as it does always.

Just to mention a few things; my children are on school holidays, lots of beach time, catching up with friends, rehabilitation and trying to make sure I will be passed seamlessly to other therapists next year, appointments etc.

Christmas is a busy time of year.

Some of you may notice the title, a (bad) song by one of my favourite bands The Cure.

Props!

I just want to give props to my Sister who got a phone call late Saturday night from London, from the director of the Royal Ballet Company. (the best ballet company in the world).
Offering her a job, effective immediately.
She was with them for 17 years.
She will be the only Dancer they have asked to come back.
The Ballet Industry is full of politics and is VERY cutthroat, Well done big Sister!

An exercise in culture.

Today I am going to see a Naturopath.
(because i am taking the mainstream way of medicine i am not taking anything the naturopath recommends, i don't have a problem taking it but the doctors advised me not to in case it counteracts the treatment).

I am also catching up with some friends who I don't see that often and we are (hopefully) going for a swim in the ocean.

Then I will go and play my drums at my friends studio.
He is working on an album on which I am helping with a little. In particular he will be using one of my songs which I am also working on with him.

Depending on the weather, my Son will have B.M.X. racing tonight, which I will watch too.

This weekend my family's Ballet school has their Christmas concert on.

A la plage.

No obvious changes today.

I spent the day with my Sister, which was nice, we went swimming at the beach.
Having been a keen surfer since I was 14, (surfing places like Indonesia, Hawaii, Europe, Fiji and the east coast of Australia), It is an alien feeling not to be confident of the ocean.
Today was like I was possessed, I made my Sister get wet, it was fresh and I'm sure she was worried for me too.

We tested the water first and my Sister was happy to do that but I had other idea's, I had my mind set on immersing myself totally.

Like drumming it is strange and foreign to be so vulnerable after being so competent. Getting dropped off to a razor sharp coral reef and surfing big waves in the middle of the ocean was enjoyable to me.

Hectic Wednesday's.

Back from Rehab now and I am really exhausted.

I did an assessment with all the therapists today to judge my progress, most things had improved but the most noticeable difference was that I moved my arms while walking! I have not done that in ages, since May 08, walking is still awkward and difficult. But a positive sign none the less.

I will really be able to measure any differences when I play my drums on Friday.

No rest! I am off to a B.M.X. track where my boy practices on Wednesday's.

On The Bus With My Homies.

Today I go for Intense Rehabilitation, (physio, occupational therapy, speech therapy), at the Hospital.
I will get picked up and dropped off, by a community based transport organisation. (thank goodness for them, they help me to feel a little bit independent).

I woke up feeling the same. I have been told in the past that my body has had a massive insult and will take some time to recover, so I guess I just have to be patient. Whats a few more months!?..

Updates pending.

Friendship, Achievment and Respect

Today I didn't notice any change. (call me impatient)..

I took my 2 children to School and went to their end of year assembly. My Daughter was given an award which she received in front of her peers. I knew, her Mother knew, she knew too, even though I tried to play it down. (she is too smart for her own good), I was so proud.

I took my Boy to some Dirt jumps near my house so he could practice on his B.M.X.

Swedish Meatballs.

I must admit on the 'eve of 7 days since the treatment I had, I am nervous and anxious. I am so eager for it to work.
I don't know what to expect to be honest.
All these thoughts are going through my head as to what I would first do, I am hanging for a surf, I may hop in my car (which i love) and say I'm OK to my immediate family and friends, just to get out of bed normally... What a way to start the day!

My sister is here from Sweden today, my children and I cooked a Swedish dish last night, Swedish Meatballs with sweet red berry sauce and gravy. Mmmm Hmmm!... I love my food.

Rehabilitation.

Today I am going to play my drum kit which is still set up in my friends studio.
Playing the drums is like a measuring tool for me as it takes a LOT of co-ordination and I used to play them with ease and sing too. (for those that don't know, it is not easy).
I play the drums every Friday as a form of rehabilitation even though it sounds worse than a first timer, thank goodness the room is soundproof.

A Diagnosis of Elimination.

OK.
I had an intense course of I.V.I.G. (which I call magic sauce, very inappropriate, it is an immune booster), 6 bottles the first day and 6 the next. (about $3000 worth).
The fact that it was approved is a positive sign.
I was told that if there would be any results they wouldn't happen straight away but after 7 days.
I have to go into hospital for the same treatment every month and I have been put on a new medication called Gabapentin which is used to treat mild epilepsy and in my case it's used to treat the pain in my trunk, which the Doctors are linking to GAD.

One of the triggers for this affliction is diabetes. My father had it, (as well as heart disease), one of my Mums sisters has it and my Grandfather who is the ripe age of 96 has it.
Diabetes is rife in my family. Ironically I have been all to aware of my families health and always believed the buck stops with me.
I have always refused to accept that it would try to manifest in my family or I.
Hence the shock over this affliction.

I wouldn't wish my situation on anyone else.
I don't want people to feel sorry for me, I just don't want this to happen to anyone else.
I'm sure the Doctors don't want another Diagnosis of Elimination.
It has cost so much. And I don't mean just financially.

Root Canals

Right, day two in Hospital.
I spoke to my Nuero team this morning and they are going to give me my second course of I.V.I.G. some time later this afternoon.
One of my symptoms is excruciating back pain that I feel all through my trunk, (the only relief is standing up, I'm not so good at that regardless, let alone in the early hours of the morning), that occurs at 1am and sometimes at 5am, its never consistently at the same time, all I know is it hurts and it happens when you should be dribbling hard sound asleep. I take a pain killer before I go to bed to cope with the pain.
The staff didn't give me any pain killers last night, I let the staff know yesterday during the day and because I find it hard to talk as it is, these incompetence's that keep happening make me feel my efforts are futile.

I got welcomed back to Hospital with a 4th Lumbar Puncture that took 9 goes to get in. It is hard to lie in the fetal position and relax knowing you are going to have a needle hanging out of your spinal column.

I know that this is where lots of well educated people work and no doubt they fix sick people but for me coming here as fun as a root canal. One of life's unnecessary evils. (for me a necessity).

Going Back to School.

I am in Hospital as I write this, watching the I.V.I.G. drip down the line, into the cannula in my left arm. I hope to God this works.
Hospitals are no substitute for your own bed. I'm not bashing them or the Staff. Quite the opposite. I think most doctors and nurses have to be both resilient and selfless.

Today as I was preparing my bag for Hospital the feeling I had could best be likened to the feeling you had as a kid after holidays or a good weekend, late Sunday, when you knew you had to go back to school the next day. (I'm sure not everyone disliked school as much as I).

Mt. Everest.

I made a pledge with a close friend to climb Mt. Everest a while ago, I have always wanted to climb Everest. I know how much preparation is involved, all the climbing equipment, stamina and training etc. Also gain experience from climbs like Kilimanjaro, some peaks in New Zealand and South America too.
An Aunt said to me that this is my own Mt. Everest. The more I think about it the more it's true. I new what hardship was before this affliction, this has put a new meaning to the word 'difficult'. It has been difficult to breaking point in every aspect.
In fact there have been times when I thought freezing your bits off on a mountain was not so bad compared to this.
On the eve of treatment I am a mix of emotions like anxious, tired, scared, apprehensive, confused, etc.
Because there is so little known about this illness I have had to come to terms with the fact that nothing may happen when I undergo treatment.
But that is so hard.
My two children are so exited at the prospect of me being well again. Their outlook has been so good and positive. Which is helpful to say the least.
I had to explain to them that it might not be successful. (children see with such uncorrupted simplicity, if only things were that easy).
Meanwhile all I can do is think about what I will do if the treatment is a success.