Birthday Wishes...

I love birthdays. Every one and everything is special on their birthday! Today is the 'birthday of the USA - 4th of July! ...and millions upon millions of people around the world - Happy Birthday to you! 

When I started to write this post - days ago... It was my wife's birthday too! I was writing in the late evening and I fell asleep at the computer!!! Not cool - when I woke up, my computer had 'hibernated' and since then... well, I haven't been on the computer for a week or so. Sorry, but my fingers and hands have been cramping quite a bit more than usual - lately.

In that time - since my last post, I've been lucky enough to be a big part in the BD-celebrations of some scouts I know; Steph; Aimee; and Angela... and - I had a (tiny)-piece of their BD-cakes too! ...YUM!

Transit of Venus 06.06.12 is the Last for 105 Years!

Hello fellow readers, bloggers, everyone in the Universe!
Today is a great day! -(well when I started to write this entry it was actually the 6th of June, 2012)- ...anyway, I was privileged to be witnessing with my own eyes, an event in the cosmos that is very rare indeed. An event known as; The 'Transit-Of-Venus' across the Sun. In fact - I was with my 2 youngest sons-[mini-minigoat; & mini-mini-minigoat], so we got our telescope out of the house - and into the backyard. We set it up and were instantly rewarded with a truly awesome sight...

Well we didn't look at the Sun directly - that would be bad, right! What we did was, we set up the 'sun-viewer-attachment' which let us view the sun safely - reflected onto a viewing-plate...and it was awesome! The planet Venus was about the size of a match-head, located in the bottom-one-third of the Sun's face - but also alongside Venus were 5 or 6 Sunspots, each about the size of a small-pinhead. It was so cool watching history in the making. This phenomenon won't be visiting the eyes of earthlings for another 105-years!

This is a short video I took of the event, for posterity - with my 2Mega-pixel phone-camera; ...apologies for the quality, but you get the gist of it; minus most of the details unfortunately, there is a glimpse of Venus at about the 2m:20s-mark; and again at the 8m:30s-mark!...We also have a cat called 'Patch'-(though his screen name is 'Woodpuddle-Cat', but he makes an entrance for the camera too!...and manages to take my attention off the subject.

But you don't know what you don't know?

There are some moments in my days that require me to 'pull my socks up' and be brave when inside, I feel less inclined. One such moment was tonight when I was going through my facebook messages and I found one from an old friend of my family... A beautiful couple, with a great family too; 3 children-[2x girls and older brother].
I was reading their message - and I learned of their tragic loss of their oldest child. I have no words to explain what feelings were racing through my mind at that moment. I could only freeze, numb at the realisation of such a trauma - I instantly thought of my own family - and what if? I dread the thought, but I felt pain as if it was...for a moment.
I wrote back saying nothing of my realisation of their loss - I choked, I couldn't bring myself to mention it. I was feeling guilt, shame, sadness - but I feel hollow somehow. I knew him-[when] he was younger, but he was a wonderful son, and brother. I will treasure his memory. I will come to my senses and keep in touch with them.

International TURTLE Day Today!!!

Hello again everybody - I thought I would take a few minutes out from my own story to tell you a little bit about our local natural wonders. You see - I don't know how many people like turtles in the world?..But I think there is probably millions; or tens of millions! All I know is this fact - that my whole family loves turtles!!!!!!!! If it's a turtle in our local creek; or a turtle on the tele; in the news; on the ABC or BBC or whatever - we love ALL of them... especially the ones in our creek!

We have beautiful little 'longneck's with amazing eyes that 'check you out'. Then there is my wife - she is a complete mad-hatter fan of ALL-things-turtle - my wife, Ozjoe is a self confessed turtle NUT. One of the reasons why I love her so much!
We've even 'renamed' a local council-park - 'turtle park'. Just because there are quite a lot of Australian-long-necked-turtles nesting in the beautiful ponds and surrounds of the park - needless to say it's a favourite place to go for lunch & just watch them go about there day-to-day!
Oh yeah, I nearly forgot.....Happy International TURTLE-DAY!

Do you love turtles like we do too?

TM-Day in OZ Tomorrow...17th May, 2012

I nearly forgot to mention it! Tomorrow is TM-Day in Australia, and we are celebrating it with an exciting get together in Brisvegas - at the Spinal-Injuries-Association HQ in Woollongabba. It should be 'awesomeness'...!!!
We will be having a couple of guest speakers-[not sure who?]..oh wait, I think one of the speakers is a Professor of Child-Psychology at the Childrens Hospital in Herston - and he's a recent survivor of TM too. So, I'm sure he will have some really interesting things to say...
I think we might also be having a 'hook-up' via satellite/skype or something like that - with somebody really interesting too!
Sorry I'm not being all that specific - I'll tell you all more about it tomorrow. Till then, then.

Have you been to a TM event in your area - recently?

It is what it is...so suck it up, and move ahead...#2

I sometimes have days where the brain's in gear but the body is in neutral - or somewhere grinding between 1st-gear and reverse! ..even after I've had 2-days of solid rest!! So here goes - this is a little bit of [I told you so]. Last weekend I helped at our local youth-organisation's 'Leadership-Course'..not an issue, I've done it before-[15-months since my last stint], so anyway, I was really enjoying it - the comraderie between Leaders and the connections with the youth, they all make it worthwhile. I got a lot of positive feedback from my peers and the parents of the youths too! ...but then it started about 4-hrs after I got dropped back home on Sunday evening.
All my joints in my legs started trembling, muscles started chattering, electricity-shocks up my back! My wife OzJoe said - "I told you so you bloody idiot"...hehe.
...Anyway, 2 days later I was still feeling like crapola!...and I've got this weekends activities - that I must pace myself for!!!


Have you ever done something like that - knowing that the consequences would be bad?

I don't know U...but U inspire me 2.

Social networking is wonderful for reaching out when you don't get out much / you know? ...Specifically Twitter - for instance I'm communicating with total strangers, but I feel like their my friends because they get me! ...sometimes, I feel it more so than the bloke next-door. It's a cliché, I know but it means a lot when you get a message or an email from someone that gets IT!!!
I just noticed that I've only done 2 blog-entries in April...sorry everyone, I will be more tuned in this month I just have been having some really bitchin-hand cramps in the last few weeks and that makes my smile turn upside-down :(
I've posted a couple of new entries in other areas of my blog / pages etc., and I've been thinking about doing some audio-entries of  my blog-posts too. Just need to figure out the technicalities - so.. Oh, and I've just updated my you-tube channel with a couple of videos, so I would love you to check it out.
Thank you everybody, I've just hit 450-views on my blog...awesome! I'm inspired....

I don't know U, but U inspire me...

I don't know you, but you inspire me...I follow this blog-[see link below]. This is a story about a woman that has a fighting-spirit, a love for life. She has TM too! This is her story, as told by her daughter, [Jaclyn] in a blog called; I wear blue [click on the link below to see her story] The Best Mom on Wheels

Jaclyn Allmon at I Wear Blue - 1 day ago

Christopher Reeve Foundation has announced the 10 finalists for the 2012 Best Mom on Wheels competition. All women are so very deserving of this award. Please take a moment to view the finalists and VOTE for the story that inspires you the most. For me, my vote goes to my mom, Jan Allmon, a finalist in the competition!! Way to go mom. You are the BEST!!! (Watch a video about my mom)...just click on the link above.

NDIS...update from the rally yesterday!

Ok, so I was too bloody sore to go to the rally myself, in Brisbane. But I got this email update from the organising committee;

Dear Supporter,

What an amazing day!

15,000 Australians around the country have sent a message, loud

and clear. It's time to Make the NDIS Real.

Today Canberra responded. Prime Minister Julia Gillard addressed

the Sydney rally and announced the National Disability Insurance

Scheme would be launched in four sites across the country next

year, supporting more than 10,000 Australians with a disability

at launch.

Opposition Leader Tony Abbott joined passionate campaign

supporters in Perth and told the rally "everyone should get a

fair go and that's what the National Disability Insurance Scheme

is about".

We have had some great news today – but we can't stop yet. We can

't stop until the NDIS is introduced for everyone, for good.

And here's a clip of Tim McCallum - singing 'You're The Voice' at the Sydney Rally-(and some nice candid moments, shots of supporters with the PM, too!

It is what it is...so suck it up and move ahead !

I've had something of a realisation - in the last week...A change of heart, but in a good way!
It started, a couple of days before departure. I was lying in bed - I'd just woken up thinking I was stressing about getting ready for making a return to my Scouts. Another year had rolled by since the last canoeing-expedition. Back then, I was a lot more 'able' (than I am now), I was worrying about all the things that might go wrong-(with me) if I went on this trip, in so many ways I could be a 'ball & chain', or that my pain would get so bad, or I'd have a fall and be alone and not be able to get help!
Barrier, after barrier..I would be a failure!...I must have layed there for a while.

Then it was like a great big hand just 'slapped-me-in-the-face', a voice inside me said..'my, my, what about that. It is what it is...so, suck-it-up and move ahead !!!!!!!!!!!
So I did something about it. I realised that everyone I love in this world, love me for being me, my family and friends know what I've been through. Physically, I don't do what I used to do-(before TM) - but I hated myself for it, not thinking that my attitude had changed. It was my attitude to 'it'. My TM is with me, and the car-accident-(in 2011) has heightened my TM-symptoms. So I'm moving ahead.

NDIS - Revolutionising Disability Services

This is a special time in Australia's political-landscape. For our Federal-politicians have an ideal opportunity to make a difference in this country, when it comes to 'Righting-the-Wrongs' - the chance to make it real for the people with disabilities AND their carers!

Well said Julia - Julia Morris is one of Australia's most loved comedians. Now, she's joining the fight to tell our politicians that it's time to MAKE IT REAL. I think its things like the huge financial hardship families living with disability face, that I feel those not impacted by disability do not understand. Lets hope the NDIS becomes a reality AND that it really does make a difference for us all!  

But you don't look sick...#3

This is an update from my last BYDLS-[But You Don't Look Sick] entry. Since then, I've been to the local hospitals-[2], one-[the PA] for a '2nd opinion' on my condition?...and the other-[the RBH] for a check-up and some new tests to do with 'my plumbing'. The results-[of both visits] were something of a shock to the system, because I wasn't expecting anything new...

My symptoms had been constantly tracking 'normal' lately and I thought I was mentally 'OK', and so I was in a good place...So, I'll share the RBH-visit first... I have to start 'self-cathetorisation'. The process was explained to me and I was given enough supplies to take home 'to-start-with', so ... 

I can report - it's not so bad really. It's just like having to do something for the very first time, relying on the verbal instruction of someone you've never met before, knowing that if you fail - you will be in a lot of pain and discomfort - and only yourself to blame, for the 'mess' on the floor!...[just like building my first 'Lego' set]...

Challenger-Deep...the world's deepest abyss!

I want to send my sincerest congratulions to Mr. James Cameron; Hollywood-Director; and now...Explorer-Extraordinaire!

For in the last 24-hours, during the most dangerous and daring journey - he participated in a solo-trip-to-the-bottom-of-the-sea...That's right, Mr Cameron is now only the 3rd-human-being to travel to 'Challenger-Deep'; the Marianas-Trench. Over 11-kilometers down...an unbelievable and courageous feat of endurance.

This trip was made possible by an equally courageous little-submersible, constructed in Australia over the past seven years by a few dedicated specialists...well done to you all!

Check out this link;  http://news.nationalgeographic.com/news/2012/03/120325-james-cameron-mariana-trench-challenger-deepest-returns-science-sub/

New to this...#7

Hello friends! It's been about twelve-(12) days since my last post, so I think I'll update you on my progress with the 'dreaded-lurgy',. I'm feeling better now than I was before I sent my previous post. This one has been a bit of a stayer (with me) this time, I was only thinking about it today - about three-(3) weeks or so! I'm past the worst of it - thank heaven's.

Today was the first time this year that I've felt 'cold' on the inside, enough to need to put on an extra layer of clothing - jumper and jeans. Just at the end of the 1st-month of Autumn.  I'm not proud of it, either! The rest of my clan is still getting around in T-shirts & shorts, though my wife 'Woodpuddle' is sitting on the lounge with her favourite-blanket...lol.

All that tells me is - that I must be an 'olde-fart' after all! So, at least we've got  the goodsense to 'stay-warm'...just may be acceptance too, I should speak for myself... Last week, I went for my latest check-up! ...It was my 2nd-appointment to the Urologist-Clinic at RBWH and I was nice and early, thanks to my wife's punctuality being what it is - brilliant. The line-up was short, it was 08:30 in the morning, so I knew there wouldn't be a problem.

New to this...#6

Firstly, I would like to ask a favour of you. Be patient with me..., please - say a Big Happy Birthday to Pi.... It's 3.14.2012 , so that means - it's Pi Day!!!... Happy Birthday to Pi, Happy Birthday to Pi, Happy Birthday to Pi, Happy Birthday to Pi - XXII / VII  - ok, I think I've said enough, or have I ??? For if it wasn't for Mr.Pythagoras, we would not be able to fly in planes, travel in trains, or drive in automobiles...hehe. Thank you very much.

This week, I've been layed-low by the dreaded-lurgy - the flu! In fact, my hole family have got it, all of us - but in various degrees of severity. From a 'two-hundred-tissues-a-day' runny nose-[TJ]; and sore throat-[MG], to a rolling-cough-[WP]; to wheezy-gurgle-[me]; oh - I forgot to say that [JD] has sailed through, unaffected-[or uninfected].

On the TM-medical front, I've started my increased doses of my drugs - and 2-weeks on, I'm feeling no 'weird' side-effects, or anything scary!..so I will continue on into the frontier. I have a couple of chores for my good son MG to do; 1.forms to collect from my local clinic tomorrow, and 2. Get a couple of prescriptions filled. 

Sorry folks - but I'm getting jerky in the legs and my hands are cramping too, so I'll be out of energy soon, my 'spoons' need a recharge and that means some snooze time... till later - please have some 'bloody-wishful-thinking' readers!

sincerely,
Glendon.

Unconditionally...

Our family is the best, most often the first point of support when we have a medical moment! What is it about our family, that intangible bond called on to bring you back-to-earth, when you have moments of selfishness? ..but still with support and love, unconditionally.

There are times when I think about my journey...the usual - Why me?...blah, blah,blah! It's always been my family to bring me back and put me in my place - stop being the victim! Ok  - my family's support of me is the main reason I've decided to do this blog.

But You Don't Look Sick...#2

Lately I've been having lots of sleeplessness, sometimes going for 20hrs at a time. My body-clock is awry, to the point that at this moment - 2:32am, I feel not at all like going to bed... I tend to rest, only when I'm completely exhausted - that way I have the most chance of actually sleeping for more than 2-hrs, as my pain levels at the present, prevent me from enjoying a 'normal' sleep pattern-[7-8hrs]. I find myself blogging! Sharing my thoughts and feelings with you is therapeutic, and part of that helps me to feel a bit more normal. Thank you. I want to share something with you that really tugged my heart-strings, I was so emotional my eyes leaked down my face!

I've just finished watching a beautiful documentary, about a couple of Australians in 1960's London, when it was still legal-to-purchase a lion-cub... so they did and named him 'Christian'. They nurtured him and loved him so much they wanted to set him free. So they  went from Harrod's of London to the Wilds of Kenya. Here is some of the documentary - a reunion...I think the best bit;

New to this...#5

It's amazing when good friends get together, even if it is only by the telephone, oh there I go again, giving away my age! ...Talking on the telephone - for 108-minutes, no less!.. See, I can talk (my butt-off), when a buddy is on the other end of the line...

I've been talking with Louise - a fellow TM'er-[for 7-8 years I think]. She's been like a rock to me. We can talk about (TM) things; pain-levels; treatments old and new; our own progress - on a day-to-day level. In hindsight, having someone there to listen to you - when all the 'bad-stuff' has been happening to your body [still, after months and years].

International Rare Disease Day...!

Well, it's 3:33am in the morning here in Bris-vegas! I apologise for any typo's in advance, ok..I have been to my GP today! For another fortnightly check up, this time it was to complete some forms, check my BP, and a review of my visit to Dr.P.S's clinic..The forms got done  - my BP is in the 'good' range - and the review was to inform GP about changes to my medicine-dosages, prescription-renewals etc..

Today is "International Rare Disease Day" - I have uploaded 'my-story' + photo to this site;
Rare Disease Day I urge all of you to have a look at this site - I think it's really awesome! What a brilliant idea - to have a whole day dedicated to increasing the 'awareness', worldwide. This is just the vehicle we need to get [our politicians] more pro-active in the understanding of these 'rare' ailments.

Besides that - I have included another 'page', titled; "Related Research" [see link -  http://www.qbi.uq.edu.au/071211-much-needed-good-news-for-sufferers-of-chronic-pain ]. This is where I'll be posting some of the latest pieces of truth, and ideas from medical-professionals that  I have researched - around Australia and New Zealand. It will include information related to all things neurological, not just TM. The first piece is from the QBI-[Queensland-Brain-Institute], while it is rather 'specific' & quite technical, never-the-less it's a very good read...I have also added a new link in the 'helpful links' page - directly to the QBI. It is very informative.

Happy Birthday GoatDodders..!

It was my birthday two days ago-[Wednesday], so I did what you suggested.. I did some 'bloody-wishful-thinking'.. that's right and it works! It's definitely better than feeling sorry for oneself, which I don't recommend at all-[feeling sorry for yourself that is]... I was upbeat  - It's not every day you  turn 46, right!  That's 16,801-days on this beautiful BLUE ORB!!!

For my 46BD - from my beautiful family-TRC, I got;

• an Apple that makes music and a card-of-plastictunes
• a whiteset of earphones by Son-y
• coloured cottons XXL2-fit my skin...and more stuff too!

Anyway, so I'd just been for my four-monthly check-up on the previous day - with Dr.P.Sandstrom's outpatient-clinic at PCH-[actually, it was with one of his registrar's], a 'minion' no less. I think that I'm up to six-[minion's], now.. but it's cool - Dr.P.S keeps a pretty close-EYE on his entourage  and they like to ask a lot of questions too. I always get a great response from them when I tell my 'story'- he,he. 

We had a good discussion about things - any progress or setbacks. I like going over my history all over-again as sometimes I know things they don't know I know! I'm getting better at it, sometimes I remember the correct terminologies to use like; 'peripheral-neuralgia', and 'ulnar-nerve' too [hey, it's not so bad in Australia], for being an 'outpatient' in a Hospital-Clinic, ..thank goodness...

My dosage for 'Gabapentin' is increasing  - chiefly to cover my 'background' neuralgia pain, which has been aggravated since my 'car-accident' last year; and my dosage for 'Amitriptyline' is increasing - to help me with my peripheral-neuralgia. My dosage for 'Digesic'-[patch] is staying [x2 per week]. So, that was my 'grease & oil change',  I'm good... for another 3 months!

p.s.    ...and for all the right reasons - I love my family sooooo much!!!