Bloody Wishful Thinking

International Rare Disease Day 2015 -- 28th February --

goatdodders@gmail.com (Glendon Raisbeck) — Thu, 26 Feb 2015 04:47:00 +0000

It's that time of year folks -- again already!

"International-Rare-Disease-Day-2015" / 28th February...

Sean Hepburn Ferrer is the eldest son of the late, beloved Audrey Hepburn, actress and dedicated philanthropist, and Mel Ferrer, actor, film director and producer. Sean Hepburn Ferrer is very well placed to be the Rare Disease Day 2015 Ambassador. He is familiar with the struggles people living with a rare disease and their families face. His mother, Audrey Hepburn, passed away from a rare cancer, Pseudomyxoma adenocarcinoma, a disease that affects only one in a million.

The personal experience of the Rare Disease Day 2015 Ambassador is common to the millions of people with rare diseases, as well as their families and caregivers. With the theme of Rare Disease Day 2015 focusing on Living with a Rare Disease, we are honoured to have the support of Sean Hepburn Ferrer as Rare Disease Day 2015 Ambassador.

It is in this spirit that we invite you, alongside Sean Hepburn Ferrer, to pay tribute to the millions and millions of parents, siblings, grandparents, spouses, aunts, uncles, cousins, and friends whose daily lives are impacted and who are living day-by-day, hand-in-hand with rare disease patients.

A quote from Sean Hepburn Ferrer

"...On January 20, 1993, my mother, Audrey Hepburn, passed away from a rare type of cancer – Pseudomyxoma adenocarcinoma. When we found out that the only tentative treatment was a chemotherapy (5 fu leucovorin) available since the 60s, we, her family, truly connected with the fact that this disease was not a priority for Big Pharma. The most precious person we knew could not be saved.

So, when Dawn Green, CEO and founder of the 'Pseudomyxoma Survivor' Charity and herself a one in a million cancer survivor, nominated me to be the ambassador for Rare Disease Day, I knew that, not only did she have this rare cancer but also a rare ability to transform darkness into light and smile in the face of adversity.

'Rare' is a word most often used to convey the same values as 'precious'… unique… valuable. And if one adds up all of us precious beings that suffer from a 'rare' disease, the number is staggering – 60,000,000 and counting. The way each of us deals with what ails us is always unique and therefore, I feel it is quite easy for any of us to relate to 'rarity'… that rarity that comes in those moments when we must truly face life and adversity by ourselves.

When my mother visited Africa for UNICEF she would often say; "we cannot save everyone… but the knowledge that someone is coming to their rescue… that we care as a society is ultimately as important…" It is in this spirit that I accepted this invitation..."

..And on a more personal note..!

Hello friends, readers, TM'ers and other 'special-people'.. I'm apologising for my disappearance from this blog in the last 4-months, it's not been deliberate. But, I've been busy with all sorts of activities - from starting a new business venture-(Raisbeck-Enviro-Mechanical-Services) and getting all of the legalities/licenses/website etc., together. As well, I've been spending time exercising with my dog Zeus!

Besides all that - I was involved in a very special event for me, along with my 'old'-band-mates and best-friends, Dave, Greg, Justin and Michael - called "MindMeld" 20th Anniversary gig! We were just one of the pre-eminent 'rock-n-roll' good-time bands, playing the biggest-n-best hits from the eighties and nineties in and around Newcastle's night-life between 1992-1997. We went our separate ways in '97 but remained in touch - even though we lived very far from each other. True friendships never fade...

Our name 'up-in-lights' outside the "Blackbutt-Hotel"

Held on the 8th November, 2014 and hosted at the 'Blackbutt-Hotel' in Newcastle, New South Wales, Australia. What a fantastic night it was too! The pub was packed-out!

L-R / Justin-[Keyboards/Vocals], Michael-[Guitars/Vocals], Greg-[Lead-Vocals], Dave-[Drums/Percussion]

With 2x "30-year High-School-Reunions", and all of our closest friends and cohorts. We played a bunch of hits from the 80's-90's and the punters loved it...

L-R / Greg-[Lead-Vocals], Dave-[Drums/Percussion], Glendon-(me)-[Bass-Guitars/Vocals]

We spent 6-months practising our 'set-list', individually at home - and we came together at Justin's place for 'live-practise' inside the specially made sound-proof-garage' we called 'VEGAS'-(no-windows/no-clocks)...

L-R / Justin-[Keyboards/Vocals], Michael-[Guitars/Vocals], Dave-[Drums/Percussion], Greg-[Lead-Vocals],
Glendon-[Bass-Guitars/Vocals]

I hope you all had a wonderful Christmas / New Year, and I trust that your 'New-Year-Resolution' is on track too. Please feel free to comment, or just drop me a line and say G'day. I'd love to hear from you...

A peaceful waterhole - another beautiful moment in time along lovely 'Cedar-Creek'

Walking is better with a friend..!

goatdodders@gmail.com (Glendon Raisbeck) — Mon, 27 Oct 2014 08:17:00 +0000

Hello readers, friends, and fellow TM'ers!

How many of you have a dog? I believe my walking is 'better' - with a friend..

My companion Zeus - (a 'bull-arab'-cross) - absolutely loves a walk up the Cedar Creek trail..

Dogs have been a part of my family for many years, living their lives with us and giving their love freely. There is so much said about there being a real benefit to your soul - of having a dog, sharing your love with them and in return, experiencing their loyalty. What is it, to 'own' a dog? When in all reality, they can just run away if they choose, right! I believe to have 'companionship' with a dog is like getting a present, every day!

A flowering 'Acacia'-Tree is a member of the Eucalypts - the worlds only flowering trees!

It is a gift, one that is returned to you with interest. For they are caring enough to welcome us into their lives, yet for them, their existence, is totally based on trust. They trust us to feed and care for them, play with them and teach them good manners (mostly), so then they in-return shower us with love and protect us - with their lives. Let me tell you something about our 'puppy' Zeus..!

Zeus loves this little swimming-hole very much!

He's been with us for a little over a year now, and he's a quick learner! I have this 'app'-for my iPhone called 'Runtastic', so every time I go for a walk - usually every day - it makes a verbal-countdown from "10-9-8..." Well, Zeus just flips out and jumps to attention and comes to me like, "..daddy-daddy-lets-go-for-a-walk.." Now, can we???? A-ha-??? He's a real 'mate' for me on our walking adventures.

Cedar Creek delivers these amazingly 'tranquil' settings..

I've taken lots of photos of our local surroundings (a flowering'Acacia' above) and of the Cedar Creek itself, with which our road we live on takes it's name. He has a favourite thing to do when we walk along and that's to walk into the creek at 'special' spots, up to his chest and stand there, he's weird! But, we love him.

Cedar Creek has a 'magical' presence - the trees create an amphitheatre..

Since January this year, when we started walking together, we've walked a total of over 600 kilometers! That's about 370 miles! Not bad for a 48-year old 'broken-man' with "Transverse-Myelitis" - and his dog! You know what - I've felt better in the last three months, than I have for three years and I put it all down to my dog! Because he drives me to do it - I walk with him until we've both had enough, not me, both! ...Thank you Zeus!

Zeus and me - (..before I lost my glasses!) ..but, that's another story altogether..!

I live with my pain everyday, as you all do too! And, I must be striving to 'pace myself', which is very difficult for me - I'm a 'boom-and-buster'. But, we all must keep looking forward and do what I call.. 'lifing-through-the-pain'..!

A thank you message..!

goatdodders@gmail.com (Glendon Raisbeck) — Mon, 14 Jul 2014 10:15:00 +0000

Hello readers, supporters, and friends alike! I would like to apologise for being "away" from my blog for these past weeks, sorry - some believe saying sorry is a weakness. Not me. I believe in the opposite! And opposites attract - so more people need to say sorry, in my opinion. The World would be a better place. Now, imagine hearing these three words, together... Sorry - thank you!

Thank you. Two more little words that mean so much, yet are not said enough. We go around living our lives day by day and we hear, read and see other people about, doing the same things. Mostly, we're complaining that we've run out of time to do all the things we want to do.

We know our problems are unique to ourselves - but, I want to personally say thank you to the people closest to me that I've taken for granted and brushed aside, I'm truly grateful. People like you and me have chronic conditions that bring all sorts of symptoms. Symptoms can be treated but the underlying conditions remain - we have too many "bad-days" for our liking.

We still must appreciate the "good-days", when they come. For me, saying thank you to those that care for me is not just being polite. It releases stress! Acceptance of my conditions is a constant battle, that I've had now since 2007. And for me, fighting the natural urge to "push-back" when someone wants to help me get off my chair or hold the car door open for me - is hard when it should be easy.

So, thank you to my current doctors and specialists, for helping me with drugs and therapies to improve my states of body and mind - both are "works-in-progress" of course, right folks! Thank you to the nurses and aids, technicians and staff - who've been there tending to me afterwards, when I've fallen into 'ditches' and down gullies. Scratches, scrapes and cracked bones by me.

P.s. Say hi to our Dog, Zeus!

Ask The Experts..! (Live-Podcast 9th May)

goatdodders@gmail.com (Glendon Raisbeck) — Fri, 02 May 2014 11:41:00 +0000

Transverse Myelitis Association Members? (..this one's for you guys!)

Hi folks, I hope this message reaches you - feeling as good as you can be! I thought I might "share" this with you all. Especially if you suffer from 'Neuropathic-Pain'. Remember this podcast is in America/Eastern Standard Time, so make a note in your diaries about your "corrected-time"...

ASK THE EXPERT PODCAST SERIES

View this email in your browser

Join The TMA’s Ask the Expert Podcast Series on Understanding and Managing Neuropathic Pain on May 9th at 1:00 PM Eastern Time.

Dr. Scott Newsome, DO from The Johns Hopkins Transverse Myelitis Center in Baltimore and Dr. Allen DeSena, MD from The University of Texas Southwestern TM and NMO Center in Dallas will lead the conversation and answer questions from our community.

For more information and to register, click here.

What is neuropathic pain? Why is it different from nociceptive pain? What causes it? What are the treatments commonly used? Are there alternative therapies that work? Are there times of the day when pain is worse?

If you have wondered about these questions and many more, please join this podcast to learn and understand more about neuropathic pain after a diagnosis of Transverse Myelitis, Neuromyelitis Optica or Acute Disseminated Encephalomyelitis.

The goal of this education podcast is to learn from the experts who are focused on research and clinical care of these rare neuro-immune disorders - transverse myelitis, ADEM and NMO.

Please submit your questions on this topic that you would like to ask the experts by going to: Google Moderator.

If your question is already submitted by someone else, please vote for it so we know which are the most common questions from our community. 

If you don't have a Google account or don't want to create one, please send us an email at info@myelitis.org to submit any questions you may have. In the subject line, please use "May 9, 2014 Podcast Question".

During the podcast, you can interact with the speakers and the moderator through our TMA Facebook page!

The Transverse Myelitis Association

ABOUT OUR GUEST SPEAKERS

Dr. Scott Newsome specializes in the care of patients with neuroimmunological and neuroinflammatory disorders of the central nervous system. He has special interest in evaluating and treating patients with multiple sclerosis, transverse myelitis, neuromyelitis optica, and stiff person syndrome. Dr. Newsome works within the division of Neuroimmunology and Neuroinfectious diseases at Johns Hopkins Hospital. He joined the Johns Hopkins Multiple Sclerosis and Transverse Myelitis centers after completing fellowship and he is currently the director of the Johns Hopkins Neurology Outpatient Services and the Neurology Infusion Center.

Dr. Newsome received his medical degree from the New York College of Osteopathic Medicine and graduated with honors. He then completed his internship in internal medicine and residency in neurology at Albany Medical Center. During Dr. Newsome’s neurology residency, he was awarded the Golden Apple Outstanding Resident Teaching Award and later was chosen to be chief resident. He subsequently went on to complete a fellowship in neuroimmunology at The Johns Hopkins Hospital with the support of a Sylvia Lawry Physician Fellowship from the National Multiple Sclerosis Society.

Dr. Newsome’s main research focuses on the use of new quantitative clinical outcome measures and imaging techniques in multiple sclerosis. These tools may improve the precision of disability measurements in multiple sclerosis and other central nervous system disorders. Currently, Dr. Newsome is involved in several clinical trials for multiple sclerosis, transverse myelitis, and neuromyelitis optica. He is also serving as chair for the Consensus Conference Committee of the Consortium of MS Centers and is an advisor for the National Multiple Sclerosis Society Clinical Advisory Committee.

Dr. Allen DeSena is currently TMA James T. Lubin Fellow at University of Texas Southwestern in Dallas pursuing a career in clinical and research on rare neuro-immune diseases. Dr. DeSena attended medical school at Loyola-Stritch School of Medicine in Maywood, IL, located in the greater Chicago area. From there, he went on to complete a residency in general pediatrics in New Orleans, LA at the Tulane-Ochsner pediatric program, and he earned his board certification in general pediatrics in 2009. Following his general pediatrics training, he moved to Dallas, TX, where he completed a residency in pediatric neurology at UT-Southwestern Medical Center in conjunction with Children’s Medical Center-Dallas and Parkland Memorial Hospital. During that time, his interest in transverse myelitis and other neuroimmunologic disorders blossomed, and he pursued further training in those areas. He is the first pediatric neurology fellow to study the rare spectrum of neuro-immunological disorders, with a particular focus on Transverse Myelitis. Later this summer, Dr. DeSena will be establishing a Neuroimmunology Center at Cincinnati Children’s Hospital and Medical Center in Cincinnati, OH.

A BRAND-NEW enterprise!

goatdodders@gmail.com (Glendon Raisbeck) — Fri, 11 Apr 2014 09:05:00 +0000

First, I wouldn't be here now writing this story but for the support and love from my Wife - and our three Sons! They're my everything..

"Glendons Graphics" is the name of my new 'shop'. Hello readers! I hope this finds you feeling as good as you can be. Well, I've been busy in the last few weeks - figuring out software to work with my artful deeds!

My drawing passion began as a hobby, just an activity to pass the time while I was recovering slowly in hospital from a rare medical-condition, Transverse-Myelitis, secondary to Guillian-Barre-Syndrome from an immune-reaction to 'FLUVAX' needle, back in 2007. I used to draw my creations in a smallish-'graph-book' and at a very slow pace. I would try and do one per day, or sometimes it might stretch to two (when my inspiration flowed).

Abstract artistic designs are what I love to create - I get a pure surge of imagination and it flows out through my left-hand onto the page. Sometimes I'll get an idea from just looking up - at the beautiful, amazing night-sky, or it might be a flower that inspires me - nature is the ultimate muse to me.

It was when I showed my friends what I'd done - they'd say things like; "..Wow, Glendon - you really need to do something with these drawings.." So eventually I built up the courage and I transferred them into a larger format - the "old-fashioned-way", by completely re-creating them, but I also discovered that they look much better in the larger sizes too!

My 'ETSY' shop banner!

I have taken the plunge and opened an online store - selling "Fine Art Prints" of my original drawings! I have big dreams and plans - but at the moment, I'm the designer, the artist, the printer, the packer, the shipper and sender. And that's fine by me too!

All items are packaged with the utmost care. Prints are first placed in archival safe, plastic protective sleeves with a sheet of cardboard and then inside hard envelope mailers (crush and bend-proof!) I trust you'll find something just right for you! Please, simply 'click' the link below...

https://www.etsy.com/au/shop/GlendonsGraphics

National Smile Day - 1 April

goatdodders@gmail.com (Glendon Raisbeck) — Mon, 31 Mar 2014 17:08:00 +0000

Hello readers and fellow TM'ers! I hope this reaches you in good spirits and good humour. (Apologies to my American friends for spelling 'humor' with an 'u' in the word - that's how we spell it in Australia). Just a quick little post today - but it's about a big message. SMILING! Put a smile on your 'dial' - for "National SMILE Day today, April 1st. Oh, and pass it on...

Put a smile on your dial for National Smile Day - it's good for you and for the person you're smiling at! Smiling can get good things happening in your brain. Blogger Sarah Stevenson describes the effect of smiling as "a little feel-good party in your brain" (http://bit.ly/1mhmyGk). If you can't think of anyone you want to smile at, give yourself a smile in the mirror. Hug yourself at the same time and the effect is even stronger. OK, so you might look like an April Fool, but who cares if there's no one but you to see?

Cedar Creek always puts a big smile on my dial (..and my puppy Zeus' dial too!)

You might also be interested in checking out the Clown Doctors from The Humour Foundation, an Australian charity dedicated to promoting and delivering the health benefits ofhumour.: http://bit.ly/1fG7qCr

How much do you know about Transverse Myelitis or TM?

goatdodders@gmail.com (Glendon Raisbeck) — Thu, 06 Mar 2014 14:43:00 +0000

..I mean, really know?

Hello readers, I hope you're feeling as well as possible today!

The Brain, Spine & Spinal-Cord - Where all the action happens!

Sometimes, we think we know all about "our" stuff.

And, sometimes we learn something "new", once in a while. I do.

(in fact, I do - all the time!)

Please read on..

By

Benjamin Greenberg, MD, MHS, and

Allen DeSena, MD

- University of Texas Southwestern, Dallas.

"..an excerpt taken from; The Transverse Myelitis Association BLOG.."

REPORTED CASES OF POLIO- LIKE

ILLNESS AND ITS RELATIONSHIP TO TRANSVERSE MYELITIS

News reports from California have recently come out identifying a series of patients, mostly children, affected by a +polio-like-illness with symptoms that can mimic transverse myelitis (TM). Naturally, these reports have raised questions within our community so we thought it would be important to address some of the concerns. First, it’s important to have some background.

The spinal cord is comprised of several different pathways and cell types. Connections from the brain descend in the spinal cord and 'attach' to neurons in the spinal cord that then project out to muscle groups. When a person wants to move their hand, their brain sends a signal down a pathway to a set of cells within their cervical spinal cord and form a connection (a synapse). The signal from the brain activates the neurons in the spinal cord, which in turn, propagates the signal to the muscles of the hands, leading to the intended movement. This pathway can be interrupted in many ways.

Polio is caused by a virus that specifically infects the cells within the spinal cord responsible for projecting out to muscle groups (the so called lower motor neurons). When these cells die the muscles they connect to cannot be activated. Classically, transverse myelitis causes damage to the wires that are responsible for connecting the brain to these lower motor neurons, leaving the connection from spinal cord to muscle intact, but interrupting the signal that was originally meant to activate the pathway. In clinic, we tend to describe this as "wire number 1 and wire number 2". Wire number one goes from brain to spinal cord and wire number two goes from cord to muscle. Polio damages wire number 2 and traditionally, TM damages wire number 1.

The second issue that must be addressed is the mechanism of injury. In traditional transverse myelitis a "confused" immune system inappropriately causes damage to the spinal cord. When the immune system invades the cord there is no virus there to be fought off. In the cases of patients reported from California, a virus directly infects and kills the cells. Any inflammation in the spinal cord is responding to the virus. TM is often a missed diagnosis. Sometimes this occurs because of a lack of vigilance from medical personnel, but sometimes it is because the diagnosis is unclear. In addition, the problem with diagnosing TM is that there is no single blood or spinal fluid test that definitively identifies TM. In addition, the spinal fluid markers of inflammatory responses cannot differentiate between an autoimmune response and a response to an infection.

Sometimes people will read that a virus has been associated with TM, but these reports are difficult to interpret. The infection could have been the inciting event but the spinal cord injury was caused by a secondary autoimmune process after the infection, or the association could have been incidental in that the patient had previously had the infection but now has an unrelated process. Also there could actually be two processes causing the spinal cord injury – both an infection-related component and a separate inflammatory component. Finally, the patient could have tested positive for the infection even though they did not have the infection at all (a false positive). Keeping these in mind, it makes it difficult to interpret many of the case reports regarding infection and TM. In addition, we must always keep in mind that the viruses and pathogens we do actually know about (and can test for) are a fraction of those that exist in nature, there are likely hundreds and hundreds of viruses or virus subtypes (meaning we know several but not all in a certain virus “family”) that we are not aware of.

Although we do not know the intricate details of the cases in California, the clustering of extremely similar cases in a short time frame is more suggestive of a common infectious cause, likely a virus, that has a tendency to target the same and/or closely similar areas in the spinal cord and, thus, causing similar symptoms.

In a series of upcoming papers, our team at UT Southwestern and Children’s Medical Center has described differences among patients classically diagnosed as having TM. Some of these patients have evidence of damage to BOTH wire number 1 and wire number 2. We are using these features and others to differentiate patients relative to treatment options and outcomes. In California, the public health system has identified a series of polio-like illnesses, where only wire number 2 has been affected. Some of these patients may have originally been diagnosed with TM, but in retrospect this may have been an inaccurate diagnosis. While we do not have specific case details, this is not an unexpected event given the rate of misdiagnosis of TM.

There is a virus that has been identified in some patients - a previously recognized cousin of the poliovirus - that may be the causative agent. It is also worth noting that this syndrome (viral damage to wire number 2) has been described with multiple viruses, including west nile virus. In the end, this is a reminder of the importance for improved diagnostic algorithms for patients and increased research into the world of acute paralyzing illnesses. The TMA and the UT Southwestern/Children’s Medical Center TM program will continue to monitor events and update our community.

News articles talking about this topic:

http://www.usatoday.com/story/news/nation/2014/02/23/polio-like-illness-california/5703827

http://news.yahoo.com/polio-disease-appears-california-children-074000774.html?vp=1

http://scopeblog.stanford.edu/2014/02/24/stanford-physician-leading-efforts-to-track-emerging-polio-like-illness-in-california-children

I hope you enjoyed this piece of information. Please, leave a comment if you wish...

Dedicated to the memory of Paul Checkley

goatdodders@gmail.com (Glendon Raisbeck) — Sun, 19 Jan 2014 13:57:00 +0000

Rest In Peace mate..!

My sympathy, thoughts and prayers go to your partner Melrose, your children and familes. I'm floored to read these posts, about you Paul Checkley. My last moments with you were at the Newcastle High School '81-'83-[30th-year reunion], last year (when this photo was taken)...

Paul Checkley.. (as I will remember you mate!).. Rest .In. Peace..16th Jan 2013

...After a great night of catching up on each others lives over the years and lots of laughter, we ended up eating Kebabs together at the nearest T/away (what else do you do in Newcastle at 4:00AM?)......and solving the world's problems...lol! I will treasure those moments...

Paul. I didn't know you as a man - but the times we had at Newcastle High School - I'm filled with fond memories and laughter and of your kindness-of-spirit - a true quality of a gentleman... ((Happy trails mate..!))

Peacefulness! ..and a BIG thank you to 'Unsung-Heroes' - OUR CARERS!

goatdodders@gmail.com (Glendon Raisbeck) — Mon, 13 Jan 2014 08:57:00 +0000

This is a sample of the mini-wilderness, just a few hundred meters "up the creek", virtually in 'my-backyard'! I choose to come here to zone-out, get-with-the-Universe, relax, un-stress! Where I can listen to mother-nature and get peaced-out! For 30-mins and sometimes longer. Yep, I'm very grateful to have access to this little-paradise in the foothills of Mt.Glorious. It's called a mountain but it's really only a hill, in the 'big-picture' - but when Australia is the flattest-continent on Earth, we'll claim it as a 'mountain'. And the water-coursing through and over the rocks, is called 'Cedar Creek'. If you look carefully you can see my dog "Zeus"-(the Wonder Dog). Finding a space like this has been like getting a daily injection of; "Aaahhh-Yes"!..

Light and Shade contrast in the Creek

In the afternoon sun, she really is mesmerising. At walking pace this spot is roughly 750m from the house 'as-the-crow-flies', and 2km to reach by trail. My dog "Zeus" and I love to go there and make it into a 'voyage-of-discovery' for both of us. It's quite rocky in places and I really have to concentrate, very slowly negotiating my way. I have used the weight of Zeus on the lead to help me stay-up, saving me from a swim!..(hehe). Consequently a typical 'walk-with-the-dog' can take us way more than it seems, ages even. Thank you..

Crystal clear waters of Cedar Creek - and it tastes fantastic!

Although I live on the other side of the world, 'down-under' in Australia, I feel grateful to all the people in my 'sphere' and 'bubble'. The folks who've helped me, get to the point where I'm at right now. I've come a long way in the last twelve months. My health-care professionals have taught me lessons in - Physiotherapy, Hydrotherapy, Tai-Chi, Breathing, Mindfulness, Relaxation. All these coping mechanisms that we can draw from. For self-help, with depression and 'attitude' to life and how we can be taught acceptance. For ourselves, for who we are and what we have. Thank you..

The mid-afternoon Sun splices through the Gum Trees

Family. Our relatives, our Wives, Husbands, Daughters, Sons, Sisters, Brothers, Aunty's, Uncles, Grand-Mother's, Grand-Father's. Thank you. You are the 'wind-beneath-our-wings' every day after day, after day. You see us at our worst - but you are the reasons why we strive to be our best. Then there is the '2nd-family', of medical staff and other Professionals who help those like you me and those more afflicted than us with - 'TM', or 'NMO' and other 'neuro-immunological' conditions. Thank you..

Is it a pair of Angel-Fish swimming? Or, Is it a tree?
It's a rock-formation, trapping leaves!

All the people involved in our 'Spinal-Injuries-Australia' community - our 'employment-options' advocates, and the allied-helpers with home-assist duties, helping us with 'walking-sticks' and 'frames' and 'wheel-chairs' etc. And the Carpenters, the Electricians, the Plumbers, the Refrigeration-Mechanics and Auto-Mechanics building and altering our homes and motor-vehicles to the ways in which we need.Thank you!

Another panorama of beautiful Cedar Creek (near Mt.Glorious), QLD Australia

HIGHLIGHTS - from the "TMA"-website ...this month;

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p.s. Please! Please! Please! --------- I invite you to subscribe to my blog. It's easy - just 'click' on any one of the links in the ---"Subscribe"--- parts of the sidebars! ---OR--- if you would like to become a 'member' of ---'Bloody Wishful Thinking---' you can just 'click' on the "become a Member" link! ------------------------- and I'd be very obliged indeed..

Cheers,
Glendon.. (Goat Dodders)

All for one and one for all: a no-fault compensation for vaccine reactions?

goatdodders@gmail.com (Glendon Raisbeck) — Sat, 04 Jan 2014 18:31:00 +0000

I was surfing the interwebs - and came across this comment from;

Professor David Isaacs <http://theconversation.com/profiles/david-isaacs-7752/profile_bio

It's a few years old now, but relevant and I have to credit "The Conversation" — and include their logo — with a link back to the specific article URL on The Conversation website.

So here it is; and the link;

http://theconversation.com/all-for-one-and-one-for-all-no-fault-compensation-for-vaccine-reactions-5837

Reports on people suffering an adverse reaction to immunisation focus on the suffering of one over the safety of many. But immunisation benefits the whole community so we should all bear responsibility for those few who experience an adverse reaction to it.

Immunisation works and to the extent that we no longer see people suffering from diseases we immunise against, it is a victim of its own success. Until polio was effectively eradicated through the use of a vaccine, it was not uncommon to see its residual effect among the population. Such sights often motivated parents to immunise their children.

Another worthy example of the positive impact of immunisation is the story of measles in Australia. Only about half of all Australian children received measles vaccines in the 1980s and the illness circulated freely. From 1976 to 1995, 94 children (nearly five children a year) died from severe measles pneumonia or encephalitis (brain inflammation).

But since the 1990s, the proportion of children immunised against measles has risen to over 90%, and there’s only been one death from the illness since 1995 (in 2004). What’s more, there are now only occasional cases of measles in Australia imported from overseas.

About one in every thousand children who catches measles will develop encephalitis. This is fatal for about 5% to 10% and leaves 15% with brain damage. In contrast, only about one in a million children immunised with live measles vaccine (or the measles-mumps-rubella vaccine – MMR) develops encephalitis, which is one child every four years.

AJ Cann

In Australia, immunisation is not and doesn’t need to be compulsory because high rates of immunisation are already maintained voluntarily. Most parents recognise that the benefits of measles immunisation far outweigh the risks. Immunisation benefits individual children and the community because a large number of immunised kids means those who have contraindications to measles immunisation, such as those with immune deficiency or whose parents are conscientious objectors to immunisation, are also protected.

This protection is called “herd immunity” and it means when immunisation levels are high, a virus can no longer circulate so even unimmunised children will not be exposed and catch measles.

But suppose a child is unlucky enough to develop severe brain damage as a result of measles immunisation. Their family would inevitably incur out-of-pocket expenses for special needs, such as wheelchairs and modifications to their house and car. Is it fair that a family suffers because their child was inadvertently injured, through neither their fault nor health-care workers', by a vaccine endorsed and paid for by the community?

By 2010, 19 countries around the world had accepted that society owes a duty of care (or of gratitude) to the very few individuals damaged by a vaccine and had introduced no-fault vaccine compensation schemes. Germany has had such a scheme for 50 years; New Zealand, the United States, Britain and most European countries have compensation schemes – Australia does not.

So what are the barriers to introducing a no-fault compensation scheme for vaccine injury? Would large numbers of people suddenly try to get vaccine compensation? This has not been the case in other countries, which generally appoint expert committees to consider whether cases of possible vaccine injury justify compensation.

Overseas schemes are funded by one of four methods:

a vaccine tax;
special funding for the scheme from general taxes;
industry contribution; or
compensation as part of a broader national compensation scheme (as in New Zealand).

In the United States, where compensation is funded through a vaccine levy, over 2,500 claimants have received compensation since 1989 and the compensation fund is in surplus by about US$3 billion.

Australia is proud of its emphasis on justice and the principle of giving people a “fair go". It seems only fair someone injured by a vaccine offered and accepted in good faith to benefit the community should be compensated by that community. It’s certainly a better solution than having people not immunise their children and so expose the whole community to a virus.

High rates of immunisation reflect public trust in its benefits and such trust would only be strengthened by the knowledge that the community will look after the few unfortunate casualties of a highly successful immunisation program.

DISCLOSURE STATEMENT

David Isaacs does not work for, consult to, own shares in or receive funding from any company or organisation that would benefit from this article, and has no relevant affiliations.

2014 +Happy New Year! +New Hope! +Brave Ideas! +Amazing Good Fortune!

goatdodders@gmail.com (Glendon Raisbeck) — Thu, 02 Jan 2014 15:32:00 +0000

A Pale Blue Dot..!

Happy New Year everyone! I want to go over a +habit-forming-method-of-self-help for you to treat your +persistent-pain which works! Here we are, it's 2014 and a +new-beginning. And now we have the most to gain from +our-collective-good-will. +Positive-thought will overcome pain, as more and more research points to the fact that our mind is in control of our +PAIN. It's a 'toolbox/a tool-kit'. But forward we can not go, unless we have the first tool in our tool-kit. #1 Acceptance. We need acceptance In our hearts for the persistent-pain we're feeling and experiencing in our bodies!

For me, +Acceptance was a bitter pill to swallow, because I thought I would be able to miraculously wake-up one morning and I'd be pain-free! (Doh!) - But happily, since changing my attitude to MY-pain, and a lot of help and training from my 'pain-team', I have reduced my 'drug-loading' by 50% in the last six months, by learning to use my mind and also exercising my body, together! Our brains are the most important 'tool in the shed', but we have to use our mind/body tools together - everyday!

A New Year - New Growth

It's working for me now, because of another thing I didn't really give any credit to in the beginning. My-Fellow-PAIN-People! Simply strangers to me at first. Just ordinary folk 6-months ago, though they soon became my '+new-friends-in-pain'! These people are the 'power-tools' in the toolbox - my fellow friends and '+chronic-pain-sufferers' that collectively have become my #2, '+my support-team'. And we quickly made a bond. A friendship forged through sweat and tears, that will grow, and prosper alongside our families and GP's/Specialists Teams. It's these folks that are so important to me because we can keep in touch 'read' each others' pain-signals - and together we'll keep each other supported if we waiver..

Yes, I mentioned 'waivering' because I have been bad, bad, bad, bad. Besides the feelings like, ..'No-I'm-not-getting-out-of-bed-today'.. (which I confess to be going through a phase at this present moment), but I also need to confess to you some choices I've made recently. The timing of which is poor (Xmas/New Year - and which I described in detail in my previous blog-post on 11th Dec 2013), but I was thinking I should have been doing something which is high on my list of priorities. Pacing! Or in my case, the lack of pacing. I've been told by my 'pain-team' - Glendon, you're a 'boom-and-buster!' Yes sir! ..Guilty as charged!

Yes, I am faster than you Dad - hurry..!

Our beloved Zeus - the wonder dog!

So, I thought that if I went walking with our mut - 'Zeus'-the-wonder-dog', that together we could build my strength and stamina back to a point where my fitness would allow me to take the next step - and get back on the exercise machines, every-other-day! But, alas, my mind forgets - that my body is 47, and not 17. And, a little more finesse and style is required here. Translated - that just means T-I-M-E, lots of time is the secret ingredient in my recovery. And so, #3 - PACING is the hard-learned, special 'herbs and spices' in this '+regimen-recipe-for-recovery'!

This brings me to #4 (+Prioritising and +Planning out my Days!) Now, this is something I'm still learning to do too, painfully at times. Ok. You can call me pig-headed; and stubborn; a hypocrite (my wife J does - when I 'backslide'!); All these synonyms fit me from time to time. I admit it - I'm flawed! But, if it weren't for my family putting me in my place, I'd be totally intolerable! I have a 2014 diary now and I'm bloody-well using it too, so I can remember the things I've forgotten to do...Lol.

#5. '+Setting-goals and +action-plans! Historically, I've had trouble with this concept too! So I need to be ever diligent in avoiding 'pot-holes'. Baby steps; one-step-at-a-time; one-foot-in-front-of-the-other; All rather apt - with my recent efforts and injuries - and self-inflicted too!

Be Patient like the rock-face - but not a patient..!

#6. Being patient with yourself! This is where I need to get up off my seat and have a belly laugh at myself! We all have different levels of patience, so I'm not going to lecture you here. But, I like this line - "..OK, now just hurry-up and wait!.." Actually, some say patience isn't a weakness - it's a sign of strength!

#7. Learn relaxation skills! I found by simply doing some "..belly-breathing.." and drawing in air into our lungs slowly, fully - really does work. This is incredibly easy to master and very beneficial to the body. If you're able to do gardening - is great (not my favourite, though). Walking to the coffee shop is cool to do! Even reading a favourite book, or doing some craft-work can get the whole body relaxed!

Achieving milestones - makes for a hard rock party..!

#8. Stretching and exercise! Can be very beneficial with proven-long-lasting effects on the body. It is always better with a friend - even 4-legged companions! Make sure you space the exercise with a rest-day in between, so your body can recover properly.

#9. Keep a diary and track your progress! This is vital to reward your self when you achieve milestones. And very handy to 'pick-up-where-you-left-off' - if you had to have a break for whatever reason, sometimes it's hard to remember where you're up to right!

#10. Have a 'setback-plan'! Helpful, if you have to STOP! Whether because of sickness, or injury (from over-doing-it), or you might be going through a 'bad-pain-days' phase. It's ok to have a setback. They're a normal thing to experience from time to time. If you're having difficulties with formulating a 'setback-plan' - go see you're GP or Healthcare Professional, He or She will only be too helpful to get you back-on-your-feet!

#11. Teamwork and action-planning! Remember this - you're not alone and you can expect to be achieving, improving, learning new skills. Your TEAM is made up of your GP/or HCP; and your Specialist-Doctor; and your Physiotherapist; and Workplace Health and Safety Doctor; and last but not least - your Family too! Lean on these folks to help get you back to your normal!

Nature = Perfect Teamwork

#12. Putting it into a daily routine! Keep up with your best effort - and before you realise it, you'll be well into a 'habit-forming-regime'. Do something for 3-months and it will become a habit - just like 'cleaning-your-teeth! Right!

These clever ideas and things are all in a system devised by a UK-gentleman. He goes by the name of +Pete Moore. He lives with +persistent pain, +asthma and +osteoarthritis, and Pete has put these tools together with the help of his friends, Family and Health-Care-Professionals in England.

Special acknowledgement also goes to the +Bradford-Pain-Rehabilitation-Programme team and also, the +NHS-Kirklees-PCT. These tools have helped myself and many, many people and could even help you too! His system is called simply; "+The Pain Toolkit", and you can find it at; www.paintoolkit.org

Wishing everyone a safe and prosperous 2014!

Cheers,
+Glendon...(+Goat Dodders).

Seasons Greetings from the Invisible Melting Man!

goatdodders@gmail.com (Glendon Raisbeck) — Tue, 24 Dec 2013 09:52:00 +0000

Cedar Creek Wilderness! This is therapy..!

Hello readers, and especially my fellow TM'ers! I'm wishing every one out there...
--- A Merry Christmas --- and --- Happy New Year! - to all of you. And a very big thank you to those of you who actually read my posts `here`. I admire you for putting-up with my bad grammar and spelling, such that it is. Speaking of grammar - do you know how many NEW elements have been found - at the +#Atlas, +#CMS, +#LHC, +#CERN facility? What about this one - +#HiggsBoson ! Surely we could come up with a much better looking name than that~ the #Screamer [because of everyones excitement], at the #discovery; or the #Whoosh [because it travels so incresibly fast]. Scientists must have a disregard for #proper grammar, else they would have `gaps` in their names...

Is he the invisible melting man?

`The Invisible Melting Man` - I wrote a song about him (me), back when I was in a band in the `90`s. I don't have the lyrics with me, but I will find them and when I do I'll share them ??? Funny how #life-imitates-art. This condition [TM], is also an `invisible-disease`, as there are hundreds of us in #Australia, and unless we're in a wheelchair [no disrespect to those who are], it's awkward finding a car space, only to be commented on the lack of disability as in [you-don't-look-sick, mate]. On the plus side, sometimes a stranger will; `pick-up` my walking-stick and give it to me, I say thank you - and cheers mate!

Makes me feel glad to be alive..!

I hope you've all finished your #Christmas-shopping, wrapping, placing and putting down of all things #Christmas. We've almost got it done, nearly there. We have a #real Christmas tree !!! Yep! We put in the front #verandah and it is awesome - a bit over 2m/7ft tall, with all the `garnishments` too. We keep watering it every day, it's thirsty in this weather [+35degC-days]...

Zeus the wonder-dog!

May you give your self a pat on the back for getting my blog to over 6,500-views, that's fantastic! I must be doing something right - thank you! Even though I still type very slowly, 15-20-wpm. But, the enjoyment I get out of doing this blog far out-ways any tiredness of the fingers, or the mind (lol). Speaking of tiredness - I've just wandered inside from taking `Zeus The Wonder Dog` for a walk (W1)-with Goat Dodders! And all I have to say is; "Hmmmmm!" because after 45-mins of solid sniffing, smelling, licking, walking, they've returned, so an absolutely stuffed Goat (he is), oh - and the dog is barking for more! Now it's over to TJ, for W2... ;-P Followed by eating, drinking, lounging around... and sleep!

So, on this short note - please have an outrageously funny, but joyous Merry Christmas and a safe #Happy New Year 2014, from #Goat Dodders. Now, I'm off to work a little bit of -
'Goat-Magic' into my new website. Hehe!

Cheers,
(Glendon)...

Get Positive with "Bloody Wishful Thinking"..!

goatdodders@gmail.com (Glendon Raisbeck) — Wed, 11 Dec 2013 12:42:00 +0000

I'm a member!

Well, I was "going great-guns", having just completed my 10-week program at the "Professor Tess-Cramond Multi-Disciplinary Pain Centre", practising my newly gotten skills - like 'Mindfulness', 'Mind-Body-Techniques', Regular Physical-Exercise' - all together designed to help me cope better with my 'Chronic-Pain', Neuropathic-Pain associated with my medical-condition, Transverse-Myelitis..

So, after a few more weeks of exercise, diet and mindfulness - I was feeling pretty good, looking better and generally coping well with my medical-condition. Even getting some positive feedback from my Physio's ! And they're tough to impress, let me tell you. I have been most impressed with my dietary changes - just go to this website; www.lchf.com I've been on this diet now for three months, as has my wife too and we both feel great..

Then it happened, (and some say.. "things happen in three's!"). So;

Ouch!

1) .. I had a minor strain in my R-Achilles-Tendon! Mainly because I thought (stupidly), that it would be better to try and follow my dog (Zeus) up the steep-driveway, rather than simply 'letting-go' of his leash. Doh... (Zeus, didn't care less - he was focused on the Ducks in the pond, on the neighbours property). No worries, right!..

Woo-woo-woo-woo_Eee-Aaw-eee-aaw!

2) .. While I was "taking it easy", about a week later I thought I would assist my sons to raise the "dog's-crate", up off the floor (to prevent it from scratching the floor, and be easier to vacuum etc..,), by a few centimetres.. So, I got out my electric 'circular-saw', made a few measurements on some choice timbers and proceeded to cut them to size. Great, so as I was making my way up the stairs I remembered that I forgot to turn off the lights. No worries! A simple pause, pivot, bend over, look around the pole, feel for the light-switch and flick it off! Simple right! (for most people), but I made it look like a "funniest-home-video's" clip. I mean, I really stuffed it all up. I slipped on the "very-wet-stairs" and went down like a ton-of-bricks and fell onto my side on the wet steps, cracking some ribs! But I got a ride in an Ambulance ;-)...

A big hole!

3) .. Another week went by, slowly. Being careful to mind the things I did, so my injuries could mend themselves. I wanted to go for a walk with the dog. So, Zeus and I made our way out the back into our yard. No worries, right! A few moments in the yard would be good for me, smelling the fresh air, getting some sun/Vit-D! So, we were walking around and I suddenly fell to the ground - in pain again. This time it was my R-Achilles-Tendon, except I really felt (and heard) my tendon give way from my heel! I had inadvertently stepped into a 'post-hole' which was overgrown with grass to the point I could not see the hole 'there at all'. My foot was in the hole up to my knee! .. Another trip to the GP/Physio ensued, the outcome of which is that I am to do NOTHING! for at least three weeks, Glendon. My ribs and Achilees-Tendon need to mend properly....... Ok!

Chronic Pain Australia! (...You guys are awesome!)

Upshot of it all? Something (the Universe / God), is trying to tell me to take it easy man! Slow down, change what you are doing, thinking, I'm not 21, I'm 47 and must take a 'chill pill'. And, I've been heeding the message lately... I have a new outlook and the pace of things is changing for me... I have turned to my art of drawing. A gift, that I love to do, as it it gives me joy! Some days I need to have a rest through the day, so I lay down. Then I practise what I've been taught in the Pain-Clinic...

And all we have to do is...
Really - just think... "like a dog thinks" all the time, sometimes!

I can relate to this too...Yep!

A penny for your thoughts?

Acceptance! ..Accepting whatever you are noticing as 'what it is', without needing to label it "right" or "wrong"...

Moment by Moment! ..As you're paying attention to now, you keep paying attention to now, even though time is going by...

Present Experience! ..What is happening right now, not what happened in the past or might happen in the future. You just stay with now, as if you're experiencing it for the very first time...

Paying Attention! ..Noticing, focusing lightly on just what you're aware of, both internally-(sensations, thoughts, feelings, urges), and externally-(sounds - outside, ambient noises). You can be aware of just one thing at a time, or many things at a time...

Glendon's Creative Art - "uni-Pin" drawing pens!

<< STOP-PRESS >> >> STOP-PRESS <<

After much positive-opinion given to me recently by my family and friends, I'm concentrating on my art and doing something positive with my drawings to get them out there! Keep watching!
...(talk about changing the subject!..lol).

Just Listen To Music; A Powerful Drug Too..!

goatdodders@gmail.com (Glendon Raisbeck) — Tue, 03 Dec 2013 13:22:00 +0000

How many times have you heard this line, being told to you? Or, have you read it in an article - and thought - 'hmm, maybe my music is a powerful drug?'
With all the drugs I've had over the years since my diagnosis, in 2009, I think I can agree with that point of view, but first let me qualify my opinion with some truths I have learnt. Recently, I found this article, written by Ivan Hewett, Music Critic, with the Telegraph, UK...

Why your brain loves music! A recent neuroscience study sets out to explain why in some respects music, offers the same sort of pleasure as a really good thriller. The love affair between music and neuroscience just keeps going and going. And this isn’t surprising because music’s power over us is so huge, and so odd. It’s not like those other great providers of pleasure, food and sex. It doesn’t help to propagate our genes. Nor does it tell us anything about the world. Curiosity is a useful survival tool, but only when applied to the world at large. And yet music seems to satisfy our craving for mental stimulation. We follow its patterns, keen to see where they might lead.

The latest research, reported on the Today programme, comes from a team at the Rotman Research Institute in Canada. It was led by Valorie Salimpoor, who was once so overwhelmed by hearing a Brahms Hungarian Dance in the car she had to pull off the road. Ever since she’s being trying to figure out why. This latest project helps to explain why in some respects music offers the same sort of pleasure as a really good thriller. A group of listeners was asked to listen to short samples of 60 songs they’d never heard before, within a style they were familiar with. The 19 volunteers (10 men and nine women aged 18 to 37) then bid for each track, up to a maximum of two dollars-($2).

To make it more realistic, participants actually paid their own money, and were given a CD of their chosen tracks at the end of the study.

While they listened, the participants brains were scanned using MRI. Many different brain regions were stimulated in the participants’ brains, when they liked a particular song. But only when they were willing to pay was there a strong correlation with one brain region in particular, called the nucleus accumbens.

This is the area responsible for the sensation of "pleasant surprise". "We’re constantly making predictions, even if we don’t know the music," said the team leader Valorie Salimpoor in an interview in Sciencemag. "We’re still predicting how it should unfold."

It might seem surprising that people should enjoy having their expectations contradicted. But these results only reveal the physical basis for something we’ve known about for centuries. In the ancient world, teachers of rhetoric knew that one way to hold people’s attention was to set up expectations and then deny them.

As the great 17th-century philosopher Francis Bacon put it in an essay on rhetoric, "there is pleasure even in being deceived".

But the implication is this only works provided the ‘deceiving’ doesn’t go on too long. Thwarting expectations is good, as long as it’s temporary. Anyone who’s studied music theory will have come across the "interrupted cadence", which does actually what its name suggests. It seems to be leading to a close, but at the last minute swerves to an unexpected destination. We enjoy this, partly because it’s a pleasurable shock, but also because we know it will all come out right in the end.

More closely relevant to this new research is a book published more than 50 years ago by the music theorist Leonard Meyer. Entitled Emotion and Meaning in Music, it offers an entire theory of musical meaning based on a close examination of things like the interrupted cadence. Meyer showed how this mechanism of "thwarted expectation" only works when we know the style. Faced with a piece of Korean pansori music, most of us can’t predict how it will unfold, so our pleasure in the music is drastically reduced.

Meyer had a subtle mind, but was writing in a different age, when intellectual fashions were different. I wonder how many of these neuroscientists have even heard of him? What bothers me about these research projects is the disparity between their musical and scientific aspects. The technology of brain-scanning and the clever experimental set-ups are so awe-inspiring we tend not to notice that musically speaking, these projects are pretty crude.

What we need is a proper dialogue between musicians and scientists; then we might learn something really profound..."

It seems there is another reason as to the importance of music, in the treatment of 'chronic-pain', especially in my case (and many hundreds and thousands, if not millions of fellow 'chronic-pain' sufferers around the world), and for other TM, NMO survivors too!

And that reason - is "Relaxation"-therapy! As I've been in the latest group, attending the Professor Tess Cramond Multidisciplinary Pain Centre, as part of their methods in treating chronic-pain; and 'persistent-pain' in all it's forms - they have a course on "Mind-Body Techniques for Pain Management". Relaxation sounds; recordings of the waves crashing onto rocks / and rolling onto a beach; and the hum of 'natural-bushlands' and 'tropical-rainforest'... I can definitely appreciate the affect that "really-listening" has on me...

The Chronic Pain Project

goatdodders@gmail.com (Glendon Raisbeck) — Wed, 30 Oct 2013 05:11:00 +0000

The Chronic Pain Project

A great new site started as a visual sociology project by Lyra, a chronic pain sufferer, photographer and artist who wanted to help bring awareness and understanding to, as well as visually document, the ‘invisible’ medical condition. The Chronic Pain Project is a developing online collection of stories from and images taken by, people who experience persistent pain.You can share photos and/or your story.

Have a look...

I am interested in the way trees might "exhibit-pain" in nature

The Chronic Pain Project aims to share the diverse experience of chronic pain through images taken from people braving the often debilitating condition. Instead of having to read or write long blog posts to connect with others (which may be difficult in the circumstances), The Chronic Pain Project is visually-based and uses the common language of photography to show, rather than tell. It is much easier to take a photo on a smartphone than to write a story – and a picture is worth a thousand words.

It is hard to bring about change, however awareness is the first step. By sharing your story and pictures with us and the world, we can encourage more dialogue and understanding of what it is like living with chronic pain on a daily basis. You are not alone.

More information and resources can be found at:

Chronic Pain Australia

PainAustralia

Australian Pain Management Association

Australian Pain Society

Goalistics Pain Management Program

PAIN explained = If you don't have a clue (like me)?

goatdodders@gmail.com (Glendon Raisbeck) — Sun, 29 Sep 2013 15:41:00 +0000

Neuropathic Pain + Nerve Pain = BAD PAIN

I keep wondering how my Doctor's can understand my pain! Or, if they can then how do they appreciate what my pain is? Especially, when they're not the ones experiencing it, quite like me! Pain is such a 'subjective-thing'. It defies any reasonable, 'cognitive' term. Even my 'team of professional carers' at the #Professor Tess Cramond Multidisciplinary Pain Centre attempt to - by accepting the paradigm that, 'everyone's pain is uniquely their own'. This is a first step in treating a person who suffers with 'Chronic-and-Persistent-Pain'.

My biggest issue, which has taken me a long time to understand is learning 'acceptance'. Like, taking ownership of a new car, I've had to do the same with my pain. It's a weird concept, one that I thought I had my head around - but really didn't properly get it - until I was involved in the #L.I.F.E. - Pain Education Program . Where 'LIFE' is an acronym for Living Independently, Functioning Efffectively. It's an eight week course, running for six-hours per day, two days per week, for assistance to manage my ongoing pain.

It is an education program, that introduced me to a broad approach to understanding and managing #persistent-pain. A real 'eye-opener' for me and something I needed to do for my own-sake (and sanity too!). The program's aim, is to help me begin to actively #self-manage my pain . While no one else can experience my pain, some approaches have been shown to help me tolerate pain better. This has helped me gain a greater sense of control over my life.

For me, living with persistent pain is a challenge that requires a large amount of personal, family and social adjustment. Participating in the 'L.I.F.E.-Program' has helped me begin to think more positively, and to develop approaches to better manage my pain and more importantly, has helped me restore my confidence to a point where I can use these #pain-management-skills in my daily life.

In the eight week period during the L.I.F.E.-Program, I attended 'Group-Education-Sessions', presented by;

Pain Medicine Specialist Doctor
Nurse
Occupational Therapist
Physiotherapist, and
Psychologist

And covering topics such as; 1.Emotions and Pain; 2.Improving Sleep; 3.Problem Solving; 4.Understanding Pain; 5.Helpful Thinking; 6.Goal Setting; 7.Values based Activity; 8.Pacing;

As well as some valuable 'one-on-one' time with the Specialists involving 'Individualised-Case-Management' I was asked to complete questionnaires, to help me better understand the impact that My Pain was having on my life.

One of the key things I learned from the LIFE Program was - The 'type' of person I am! In respect to the questionnaires that I filled out. It turns out that I'm a #Boom-And-Bust human being, not given to 'Pacing' one's-self either. So, the portents are not good for me - I've been on the exercise machine for too long. (Again!)..

'Mackenzie'... A Dog's life!

goatdodders@gmail.com (Glendon Raisbeck) — Mon, 16 Sep 2013 13:49:00 +0000

New Life After ...flooding, in Cedar Creek, Queensland

+Chronic-Pain is such a subjective matter - every time someone asks me about +my pain; ".. what is your pain out of 10?.." I have to think about it and try to turn it into something that can be measured? When I say that it's 8/10, my 8 out of 10 might be somebody else's 7 or 6 or even 9. What ever it is - something that is always immeasurable is a family pet's devotion - in return for nothing more than a look in the eye, a pat on the back, a rub under the chin and a bowl of fresh food and water...

Our family dog, "Mackenzie"-(our 'rescue-dog' - a black Labrador), departed 'this-mortal-coil' in early March 2013. We had to have him 'euthanaised'. We were taking care of him the best that we could - with lots of love and tenderness. Although he was in a lot of pain associated with a +Tumor (on his lower-jaw) towards the end of his life, never-the-less he was always happy doing all sorts of stuff with his human family and then afterwards, he loved spending some well-earned rest-time on his beds (one each, on the back & front +verandah's of our house). The times when I took 'Mac' for a walk up +Cedar-Creek and along the water's edge, were some of his (and mine) favourite-moments. .. ! Actually, it was more like he took me for a walk instead.

'Old-Mac' - Mackenzie (we miss you mate)... R.I.P.

Our 'Old-Mac' really loved it when we would together go out for a wander in our little +wilderness. Especially, after the rain - during the time just when the air has that 'really awesome smell' of FRESH! (when it's full of +negatively charged-ion particles).

We had him for a beautiful13-years! So, 'he had us' should be the correct terminology here, remembering back to the day -(in Feb-2000)-when we met each other - at the local '+RSPCA' -(Royal-Society-[for the]-Prevention-[of]-Cruelty-[to]-Animals)-depot, in +Newcastle, +New-South-Wales, +Australia.

It was a beautiful afternoon and our family were ready to bring another member into our home. We were strolling through where the '+Rescue Dogs' were kept and we couldn't help but feel 'dread' for these condemned-animals (through no fault of their own) on a virtual 'death-row'. With their hopes up for the next family coming around the corner to 'take them home', they were all putting on a good-show for us!

Very True...

We stopped at the cage labelled - "Mackenzie", partly because he was sitting, staring at us with a look almost directing us to pay him some attention - also because he had the most beautiful +black-coat with his tail waving energetically, we started a conversation with... "Hello Mack", to which he chirped a bark in quick reply! He let us touch and pat him - and we fell in love! (But I'm not sure who was the first of us to fall in love with him!). We were allowed to meet him outside the kennel, in a yard alongside. The feelings of emotion were busting out of each of us - consequently we said a great big YES to our hearts! After the requisite 'shots' and +Vaccinations, we travelled home in the car back to +Warners Bay with a +one - in the back seat!

Life went on for us but, after a while I got an offer of a work-transfer to +Lismore (northern New South Wales, NSW), in 2001. It took a few weeks of negotiation, but eventually we settled into our new house in +Modanville - about 10-kilometres north of Lismore. 'Mac' was really loving the wide open spaces of our new home - set on 2-1/2-acres! We were on a sloping-block with some 'terraced' grounds, and a 'fantastic-view' down the local valley - and also from our kitchen 'bay-window'! We could sit for hours - watching the +weather roll-in with +awesome-lightning-shows from the big storms, and following the lights of the different vehicles driving along the roads at night. Anyway, we had just enough spaces in our property where Mac used to have trips down to the back-boundary and sometimes, be 'shocked' by the electric 'stun' fence - although it didn't hurt him at all, he was certainly trying to test his boundaries! Many great memories from those days with our puppy...

A personal plea... to my International Friends..!

goatdodders@gmail.com (Glendon Raisbeck) — Fri, 30 Aug 2013 14:33:00 +0000

I ask for your forgiveness here, as I'm not an extroverted-political-animal - but I do feel duty-bound to post this message on behalf of all the disabled folk in Australia - who have 24/7 care from their loved ones! The unsung heroes of our country. So, please be patient with me while I get this post - "out there" before 09-06!

Our beautiful 'Ghost Gum' - out the back yard!

Dear Fellow Australians,

There are just seven days until Every Australian Counts Day.

That's seven days to make sure our leaders are left in no doubt that they can't walk away from The Promise they made to implement the National Disability Insurance Scheme now and for the future.

It's time to let them know how many people support the NDIS - it's no small number.

Almost 160 000 people have signed up to support the NDIS. That's nearly 160 000 voters who have said the NDIS must happen.

Together we can make sure this isn't forgotten before polling day. Here are three easy things you can do before 6 September to help:

Print out an "I Count" poster from the website and put it up in your local café, library, workplace or Church notice board.
Add the NDIS election champion twibbon to your facebook profile picture.
And, most importantly, find an Every Australian Counts Day event in your area and RSVP to attend one TODAY.

The more your candidates see people in the community supporting the NDIS the clearer the message will be that they can not walk away from The Promise.

If we all do this together - they will know there is no turning back.

Thank you!

New Book: 'Taking Charge; A Journey Of Recovery'

goatdodders@gmail.com (Glendon Raisbeck) — Wed, 14 Aug 2013 15:50:00 +0000

This is a great piece of news from a fellow TM-survivor! I first met Professor Graham Martin at our local "Spinal-Injuries-Association" branch, in Brisbane during 2011's "TM-Day" gathering. As my memory serves, it was a day of personal character building for me, and a sharing of experiences by Graham, that helped me to change my appreciation of the "neuro-immunological-condition" that is Transverse-Myelitis, and turn my attitude to "life with-TM" around.

Given my limited physicality, impacted through TM-related symptoms of constant 'Neuropathic-Pain', 'Numbness', and 'Shooting-Pains and Muscle-Cramps' in the legs, arms, hands and feet, even so - I am currently taking Physiotherapy sessions to improve my 'core-strength'; Occupational-Therapy to "get back behind the wheel" driving a vehicle again-(with medical clearance); and Speech-Therapy to aid my Larynx-vocalisation recovery.

I will be getting myself a copy of his new book too! He is a lovely person, and genuinely funny. Please read on, and challenge yourself...

"...Sunday, August 11, 2013..."

New Book: 'Taking Charge; a journey of recovery' by Professor Graham Martin.

I stand, I walk, I talk - Professor Graham Martin

This book traces my first experience of serious illness and my admission to hospital. As a doctor, somehow you expect to be able to diagnose your own illnesses (wrong), get some slight preference in hospital (wrong), have colleagues and staff treat you with care and respect (wrong), know how to manage your illness (wrong). Personally my experience of Transverse Myelitis was terrifying. My initial experiences in hospitals were just awful, and really quite traumatising.
You may not be interested in the illness itself. But I am sure you will have expectations of how you should be treated in hospitals.
My reaction to the whole thing was to record daily experiences and try to makes sense of them. What started as a miserable life experience turned into something funny, wry, and challenging. I am told by my readers that the book is funny and sad - all at the same time.
Give it a go. You can buy a paperback copy, or download a pdf eBook

Purchase the book here: 'Taking Charge: a journey of recovery'

Hypnosis to tackle problems of chronic pain: International expert..

goatdodders@gmail.com (Glendon Raisbeck) — Wed, 10 Jul 2013 11:19:00 +0000

This is a little snippet from a link of mine, at 'Chronic-Pain-Australia'. Please read on..

"...A visiting international rehabilitation expert has called for Hypnotic Therapy to be considered a ‘mainstream’ treatment option in the management of chronic pain, potentially benefiting thousands of Australian pain sufferers. Presenting at the Australasian Faculty of Rehabilitation Medicine, Annual Scientific Meeting in Brisbane today, Professor Mark Jensen, Vice Chair for Research in the Department of Rehabilitation Medicine, University of Washington, urged Australian healthcare professionals to discuss the option with their patients.

“Pain management for patients, particularly those with long-term illness or injury requires a considered and holistic approach,” Professor Jensen said. “Imaging studies have shown that Hypnotic Therapy influences all of the cortical areas and neuro-physiological process that underline pain. “Helping patients manage pain can have a significant psychological impact. What people do to manage pain and what they think about pain, and their social environment, can all influence pain and its negative impact on functioning.”

Stark Beauty

Findings that could have significant benefit for sufferers of chronic pain, their family members and caregivers, show that Hypnosis can reduce daily background pain intensity for many patients. Moreover, recent well-documented clinical trials in people with disabilities have demonstrated that Hypnotic treatment for chronic pain has specific effects on pain intensity over and above effects based on placebo (expectancy) alone.

This is good news for the estimated one in five adult Australians (3.2 million) that suffer chronic pain, a number that is projected to increase as Australia’s population ages.
“Hypnosis still has a certain stigma to it,” Professor Jensen said. “However we are seeing this treatment option used to manage debilitating physical and psychological conditions including phobias and addiction.

“It may be that physicians are not recommending Hypnotic to their patients due to a lack of understanding of the process, or it may be that patients are wary of Hypnosis.
“Hypnotic treatment for chronic pain management has proven efficacy and should be explored as a viable option in the treatment plan.”

Further to the pain management results associated with Hypnotic Therapy, Hypnosis can influence a number of non-pain-related quality-of-life domains according to Professor Jensen.

“Based on various international studies, the side effects of Hypnosis have been shown to be overwhelmingly positive. Indirectly, any therapy that can assist with pain management can ease the burden on caregivers, and positively impact family relationships.”

Professor Jensen recommends that rehabilitation physicians train patients in the use of self-Hypnosis to achieve immediate pain relief and provide audio recordings of treatment sessions to enhance treatment effects..."

Sources: http://http://www.news-medical.net/; http://www.chronicpainaustralia.com.au/ ; http://www.racp.edu.au/

What an astonishing thing a book is!

goatdodders@gmail.com (Glendon Raisbeck) — Wed, 27 Feb 2013 16:07:00 +0000

"...What an astonishing thing a book is! It is a flat object, made from a tree. With flexible parts on which are printed - with lots of funny dark squiggles. But, one glance at it and your inside the mind of another person, maybe, somebody dead for thousands of years!

Across the millennia, an Author is speaking clearly and silently, inside your head, directly to you. Writing is perhaps the greatest of human inventions, binding together people who never knew each other, citizens of different epochs. Books, break the shackles of time!

A book, is proof that humans are truly capable of working magic!..." - Carl Sagan.

From Timeline Photos

A friend sent this picture to me on Facebook! And I couldn't agree more with the message, as I have only just finished reading the first novel in a series by author Lee Child, titled.."Killing Floor", in which he introduces the character.."Jack Reacher". Anyway, I have just begun the Jack Reacher series' 2nd book, titled.."Die Trying". I recommend Lee Child, he is a rollicking good read.

So, in the space of two months - I have finished one, and started two books, which for me is a world record! I am the first to admit that I am terrible - no, woeful in fact is a better word - when it comes to reading "books". The last time I finished a book from cover to cover was about twenty years ago, no joke! It was, "The Hunt for Red October".

In the same amount of time, my wife J has read, probably - literally hundreds of titles! And so has my oldest son MG, and he isn't yet twenty-one! This is a fact that I am not proud of for myself, for my reading-list of novels is shocking. But, I am intent on making up some of the ground, this year at least.

I am a reader of journals, 'text-books', and magazines though, anything that deals with the sciences, engineering, physics, the sea, the air - nature is fair game too! My engineering background gives me an insight into the wonders of the universe, through astronomy - a 'genre' that I have loved since I was old enough to sit in front of the TV and watch the documentaries, made famous by Carl Sagan himself, ..."Cosmos - A Personal Voyage", way back in 1980 - (R.I.P, Carl). My first venture into science fiction was with my brother G in 1977, when we went to see "Star-Wars", need I say more.

Back to books, then. The first book I read that had me hooked-on-reading, (that I remember), was - "Walt Disney - Fantasyland". So I guess I have been hooked on science and science-fiction, because of Walt Disney! He was one 'far-out-dude', in his day!

A sign for the..."World's Largest 2nd-Hand Book Sale", in Brisbane CBD.

My wife J and our 3 boys have gone every year to the "Worlds-Largest-2nd-Hand-Book-Sale", held in Brisbane in winter. Our home is happy to receive some new 'friends', each sale! They really come cheap too, some books only costing 5-cents. But they are priceless in the way that they can become our treasured possessions in no time at all. All types are catered for - no topic is off the table. If your're lucky - you might find just what your looking for, even if you weren't really there looking - just looking!

Reading is a good way of taking my mind off my persistent-pain! It's been strongly recommended by my OT, and specialist neurologist - so I've been doing a lot of it (in small doses). I have to agree, it actually works best when you really get 'into-it', so I've been reading in bed (mainly), then going off to sleep. It will take me about 2-months to read a 500-page book! I know that is terribly slow for 99% of people (like watching your fingernails-grow!), but It is my pace at this moment.

So go grab a book and start reading now, for goodness sake!

Happy Valentines Day to You & Yours!

goatdodders@gmail.com (Glendon Raisbeck) — Thu, 14 Feb 2013 09:02:00 +0000

Well, it is Valentines Day - I wish whoever should read this post today - for you to have a wonderful day! ..And I hope that you all get to share it with your significant others too! I think any opportunity to share love, and be loved is important. As important and sacred as life itself. We must take time to "smell-the-roses", I will share my St.Valentines-Day story with you.

My Valentines Day this year (2013), started out with a... "BANG!"...Scratch ...Screech ...Thud! My family's 13yo black Lab "McKenzie" - beautiful, gentle, loving - having a fit - a panicked dog unable to stand on his all fours for the first time (like this)-in his life. Crazed commotion woke me up! I wasn't sure what was happening at first, I couldn't see him. But, I could hear him - in the faint light of the early morning, his motion eventually awakened my 16yo son JD, too! As we both looked into the wardrobe, we saw a helpless animal trying to make to-stand-up!

We got him settled - eventually! A dog this old - has a high risk of having an "episode" like this, right! Even so - it bloody scared me and JD. After we cleaned him up, we gave him a 'once-over' and helped him over to his food-bowl - not hungry, ok. His water-bowl next. No. That's ok, so I thought I might take him for a walk outside, then. To get some fresh air (me too!). We got as far as the grass - it was damp with "dew", and "Mack" lost his step... And again... Another stumble. so, I called JD out to help him with his stride and gait. He walked alongside "Mack", like a tug-boat ushers a bulk-carrier around a harbour. We managed to walk him for no more than 30-paces, before he stumbled to his right. Drooped-over he looked like he wasn't "there".

We both looked at each other and my eyes welled-up. I was witnessing my mate - our family's companion - take a 'turn", I said to JD that 'I think he's had a "Stroke". So, we gently turned McKenzie back, into the house. Back to his favourite Pillow/Cushion - and JD, layed down with him on the floor. I went into the bedroom and had a moment to myself - sobbing. I was coming to the hard realisation, that my dog is on borrowed time! My wife J, and I had a quick "heart-to-heart" with our boys - TJ, JD, and LE. We made a safe place in the car for Mack to be comfortable, and we rang the Vet...

We made the dash to the Vet's. About a 20-minute drive. We were ushered straight into the clinic - and met the lady Vet, Erin. She was so gentle with McKenzie, and it was like he just melted into her hands - like their was a "magic-power" between them. The Sick & the Healer. It was a special moment for all of us! After a few tense minutes of Erin looking over every inch of Mack's frame and muscles. Down on the ground with him, she was like a 'mother' - gentle! All-the-while-she was whispering to him - calming him (and us too!), but still checking, feeling, analysing. Then after she was finished - she stood up. Well, she said... I want to take a blood sample, if that's ok? ...Yes, it was ok.

Afterwards, we got the news. It seems as though our hunch was right - a "Stroke". Somewhat to be expected, but never the less - a shock to 'our' system! We all had a little sob, again. But, Erin said .."There is some good news from all this. McKenzie's blood work-up is excellent"! His Heart, is in good shape. His lungs are fine, no fluid. Liver, great. Kidneys, good. He is in terrific condition for a dog of his years-(13+). We were in a kind of weird space! Happy-sad!

MacKensie is our hero! He does have a facial growth/tumour, which we'll have to treat palliatively, and he has "wonky" back legs from the 'stroke' too. But, we get to be blessed by a beautiful, black (& gray)-puppy for a while longer! However long that time is - we don't know. We just know that today was not his day to say goodbye to us!

The love of an animal is a blessing!
Happy Valentines-Day, Mackenzie!

TM. A Neuro-Immunologic-Condition...

goatdodders@gmail.com (Glendon Raisbeck) — Mon, 11 Feb 2013 16:35:00 +0000

Transverse Myelitis

A l l u p t o - d a t e i n f o r m a t i o n o n c l i n i c a l
s t u d i e s a n d t r i a l s c a n b e f o u n d o n
http://myelitis.org/research/clinical-studies-trials

For those of you, who are still reading this far - I thought I would just reprise an earlier post that I made, almost a year ago. I think it means so much - especially when you might be able to relate, as I have - to this remarkable, true story! (thank you Christine...)

read on..

Thank you for all the support, it's really amazing! I've titled this post; "but you don't look sick...!" because it relates to a little yarn-of-truth called, "The Spoon Theory" written by Christine Miserandino, a complete stranger to me. Christine is living with 'Lupus' and I must sincerely thank her for helping me realise [my] pain isn't always felt by those I love and care about. And, that I have to take account of the decisions I make when it involves others, especially my family. I can relate to her story [me living with Transverse Myelitis]. I can also thank my wife 'Woodpuddle', for finding this yarn on the Internet and sending it to me, some time ago.

I want to share something with you that happened to me yesterday. My beautiful wife 'Woodpuddle' is so bloody patient with me! ...So yesterday, WP came up with the idea for all of us at the TRC-[my family] to go for a drive in to 'Southbank', then to Scouts - and I wanted to go along too. I was 'quizzed' by my dearest;"are you sure you're up to this?" I said; 'yep', nodding in the affirmative! Well, off we went in the car..it wasn't too long , before travelling-in-the-car become more [painful], than I realised. Pretty soon after that, I started to argue with everyone about the shortest-route to take! ..I didn't even think; 'Why am I arguing?' No, not even when my youngest - TJ said; 'I love it when you and Mum have a cranky with each other, it's so funny!'...

But the thing is, I should've understood that "it just didn't matter" - we were just out for a FUN time!!! - Eventually, after a few minutes of awkward silence, 'The Penny-Dropped' and I apologised, very honestly to all my family. We continued to Southbank, then later to Scouts. The day was resurrected - looking back, I feel like a fool because I lost my cool. My wife new I probably wasn't up to a full day, just yet. I pushed myself - and I'm paying for it, today - I am living the spoon-theory. Please read on...

"The Spoon Theory"
by Christine Miserandino www.butyoudontlooksick.com

...My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.
As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?
I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn’t seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.
As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.
At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.
I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.
Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.
She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?
I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.
I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.” I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.
I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s “spoons”, but just think how hard tomorrow will be with less “spoons”. I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on “spoons”, because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.
We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.
When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.
I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared.”
Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons”.
After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can’t go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”
Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my “spoons”.
© Christine Miserandino

A BIG thank you! My friends...

goatdodders@gmail.com (Glendon Raisbeck) — Wed, 06 Feb 2013 06:17:00 +0000

From left to right is the raised flood-bank along Cedar Creek - a tranquil walk

It has come to my attention, that I have to say a very big thank you to my friends - those folks out there in the 'interwebs', who have taken the time out of there busy lives to visit my blog - read my 'ranting' sometimes 'random' posts, but thinking about my story enough to stop and leave their comments. It really makes a massive, positive difference to me!

So, thank you folks;
+Priscilla Hedlin ; +Kevin Weilacher ; +thillai raj ; +The Onion ; +Optimistic Existentialist ; +Cheri Interman ; +Chronic Pain Queensland ; +Todd Tarno ; +Tú Phạm ; +Jaclyn Allmon; +Lew Gray ; +ATLAS Experiment ; +Richard Branson ; +Susan Kleinz ; +Jayne McCubbin ; +Akua Hope ; +Chronic Pain Queensland ; +Vicki Whitford ; +Kouto Yamamoto ; +Linda Egli ; +Leslie Samuel ; +Janice Nichols ; +Barbara H. ; +Barbara Alma ; +Ron Garan ; +CERN ; +Abdu'l-Hanif Al Shukri ;

I thought I might just show a glimpse of 'our' little Cedar Creek. It plays a part in my journey - in the background - trickling, flowing, bubbling along. She can be both serene and at times bad tempered. We love it...

A peaceful swimming-hole - our beautiful Cedar Creek

Sadly, due to the unforseen 'Monsoon' which visited upon us 2-weeks ago - and delivered howling winds and torrential rains - our beautiful Cedar Creek has been somewhat remodelled...

Cedar Creek, view of driveway -[gone!]- The raging torrent!

Cedar Creek Road Causeway - 16in' /400mm water over road. Eventually - the Creek swelled to approx. 40in'/1100mm over the road - and the signs went under!

However - I never lose my wonderment for 'Mother-Nature'. How she can be both tolerant and terrible - in the space of a day. But, out of all the maelstrom can come new growth, new beginnings, a fresh start. Wonderful...

The NEW Cedar Creek - exposed, raw, ready for action - new swimming holes to explore!

A new log jam - so Cedar Creek picks another route! Rocks, rocks, everywhere!

Hello 2013! Can you believe it? A 2nd Australia Day!

goatdodders@gmail.com (Glendon Raisbeck) — Sat, 02 Feb 2013 16:06:00 +0000

Tropical Cyclone 'Oswald"

I feel like a survivor - in so many ways. I know that sounds like a tired old statement, but so what. It is my reality, so you can hear-(?) me say it because I love being alive right now! Maybe it's just the flavour of my "Moccona"-coffee & "Dilmah"-tea cocktail in the bottom of my mug - you know when it gets to the bottom and the good bits rush in! So, when I feel like I do - like I do now - mostly, I forget to share it around on here in my blog, because I have to remember to blog! That's not easy for me, at 46 with the memory that I've got - but considering all that I have been through, I feel for the survivors of the monsoon-floods in Bundaberg, when the "Burnett-River' burst it's banks, in Queensland on Saturday 26th January, last weekend...

Queensland Rivers in flood...

So in my small way, I want to say a tribute to the ordinary people of Bundaberg for being so tolerant in the face of despair. After having lost everything - memories, belongings, houses, even the lives of loved ones - they still show a side that makes me proud to be Aussie - true grit! When the entire northern half of their city has been obliterated by Natures fury-(Tropical-Cyclone 'Oswald"), so absolute strangers come together to help their brothers and sisters, clean up the mess left by the maelstrom from last weekend...

North Bundaberg - (in flood)

The Premier of Queensland - Mr. Campbell Newman, has graciously issued a proclamation; "That Queenslanders can have a second chance to celebrate "Australia-Day"-(formerly held every 26th January), to be given a 2nd Australia Day, on the 3rd March 2013. Thank you sir - for giving this courtesy! Let's hope we can have a good weather day to celebrate, our day!

Too easy can I forget that there is always someone out there - somewhere, doing it tougher than me! I wish I could remember that more often, than when I get reminded of that - When a tragic event occurs - somewhere around the world, or even in my own 'backyard'. It also means that I can be grateful for the level of health I have right now too! And that we can be good to each other, loving to our families, respectful to our friends, and when they need a helping hand - to give them a hand before they ask for it! Just like Good-Charlotte!

Our thoughts and prayers are with you folks...