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Upcoming Appointment with my Pain Specialist

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In just a few days I will be seeing Dr Christelis.

I’ve had one follow up appointment since my sacral stim implant.

It’s not that the stim has miraculously sorted my chronic pain issue, and not that I haven’t had a million symptoms to question, but I’ve come to learn that symptoms change alot. So I wait weeks, even months before deciding whether I need an appointment.

During this time a fair bit of info accumulates. I learn alot about my treatment and alot about how my body responds to it. It’s impossible to remember all this detail.

Thoughts I battle before an appointment are – how I’ll manage the car ride, my preference to be self managing, and that I’m sick of appointments. There is also the cost issue to take into account and that there are others who need these appointments also. A good pain specialist is busy.

Being conscious of the above, I’ve learned to manage appointments better. I plan for the appointment by using Pain Train to speak for me and remind me of everything I want to say.

Wanna see how I do this?

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Welcoming the biggest US beauty brand to Australia – Rodan + Fields

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Who says injured workers and people with chronic health conditions can’t work?

Welcoming the biggest US beauty brand to Australia – Rodan + Fields.

Give me an opportunity to be involved with a company that doesn’t pride its business on photoshopped images, that embraces ageing, while also offering a business model that allows me to be involved within my health limitations… and I’ll be attempting it!

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This, is Queenscliff

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I’m thinking it might be relevant for followers to see where I moved to. So, here you go – welcome to Queenscliff!

It has been a huge transition (by now you’ve heard about it) but moving from my previous (20+year) city life to this seaside town is quite a change!

Kind of forced sea-change! Continue Reading

Self Management: Acceptance, Commitment & Sacrifice

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Elizabeth Banfield_written within
(Image: Written Within* by Elizabeth Banfield hand burnished linocut, kozo tissue, thread ©2017)

My sacral stim and I have known each other for a full 17 months now, so I felt it was the right time to make some comments and reflect, again, on this self management business.

Yes, the sacral stim is making a huge difference.

Now remember – I’m talking about my pelvis, my pain experience, my brain, my nervous system and my genes

Three (of my never-ending) realisations for living with chronic pain are that I have to:

  • accept that my life and I have changed – forever
  • commit to a new way of living, and
  • make the sacrifices that it takes to self manage

Chronic pain really blurs life so it takes time to realise the impact (positive or negative) of any treatment or change of activity.

Time seems shorter for me. When I compare myself with full capacity humans, I feel I achieve less and the physical cost is greater.

Not the best value! But it’s what I can get.

The Sacral Stim

The good news is: Continue Reading

ADF campaign: Losing Yourself in Pain Medication

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The Alcohol & Drug Foundation (ADF) has been working to enhance awareness about the way Australians consume pain killers.

My understanding of the campaign is that the ADF in no way suggests pain killers are not necessary – many Australians require their medication to manage their health issues – but patients should investigate other options and be informed about the effects of taking these medications long-term. They should not be recommended as a first resort.

Within a few months of taking chronic pain medications, I realised it was not a long term plan for me and was thank full to be able to find other forms of treatment that could help me survive chronic pain day-to-day.

Mamamia: My experience with medication

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Mamamia_0794

It’s time we talk about the addiction killing more Australians than heroin and ice combined.

(Excerpt from mamamia.com.au. Story by Caitlin Bishop)

Soula Mantalvanos was 37 when she was sitting on a fit ball and it burst. She landed on concrete, hard.

“It was a split second. It was bone to concrete and it felt that way. I was in shock and then thought ‘I can’t move, I can’t move’. Slowly, I turned over and crawled to the carpet,” Soula told Mamamia. 

Before then, Soula walked everywhere. She lived with her partner in the heart of Collingwood, Melbourne. They would walk to see friends, walk to dinner. Soula did yoga four times a week. She could hold a shoulder stand for eight minutes. Continue Reading

Suck it up and smile – it’s holiday time!

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Yippee!! Not! It’s too hard.

I was dreading Christmas – like I usually do. And I’m dreading New Year’s eve and day – as I usually do. And even though I would regard myself as ‘experienced’ and loaded with the best treatment possible, there seems to be no way of avoiding pain during holiday time.

Suck it up!? Um…,

No!

And that word my dear readers, is how I manage this holiday time.

I’ve learned it so well now it just rrrrrrrolls off my tongue and I loooove it because it’s always there for me and it keeps me HAAAAAPPY.

Here it is again:

Noooooooo

And with that comes,

I’m sorry, I can’t do ‘that’

With the truth being, I definitely can do ‘that’ but I have chosen (well sort of voluntarily obviously as I didn’t plan this bizarre accident) not to, because I don’t want the pain levels during – and after – I do the ‘that’.

There.

But of course it isn’t so easy. There are a few sad bits that come with ‘no’. Continue Reading

Adventures of a stim controller

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Ever wondered what a stim’s controller’s day looks like?

Firstly, let me clarify that I’m talking about my Boston Scientific Sacral Stimulation Implant controller (BSSSIC), not my St. Jude’s Peripheral Stimulation Implant controller (SJPSIC otherwise known as, the one that saved my life).

I’m experimenting at this 7 month post implant stage in order to figure out whether I need the SJPSIC by not using it at all. Two devices in one backside cheek is quite tricky at times. Someone without a chronic health issue would probably complain endlessly as this situation does have a few uncomfortable limitations. For someone with a chronic health issue though, that side of things, is a piece of cake in comparison – almost welcoming when you think of the benefits that come with it.

And one more thing, before I go on – no! I won’t turn both on for your entertainment purposes.

A controller has a fair job to do – it’s committed 24/7. Continue Reading

Time to exercise – but how?

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It took six full months for me to feel I was ready to have my follow up appointment with Dr Nick Christelis after my Sacral Stimulation Implant.

I got a few ticks at the appointment:

  • Device incision healed
  • Leads incision healed
  • Both areas feeling cushy and a bit more robust
  • Honeymoon period helped with setting up the new life
  • I’ve learned a few of my new limits

I also got a few concerned looks expressing the following:

  • I’m more fatigued
  • I’m sad
  • I’m feeling like I can’t get up in the morning
  • My mood is really low
  • I feel I’m slipping
  • Sleep is a bit more disrupted than usual
  • I’m waking up anxious, breathless

We had a good chat. We agreed alot – especially about the need to find a way for me to exercise. I’m resting less now – no longer napping in the afternoon (a great thing!), so that means I’m moving more. But my heart rate isn’t really going up. It needs to.

In the nine years of chronic pain, I’ve tried a squillion routines and tricks in the attempt of finding some way of exercising without painful consequences.

Anything I attempt seems to translate as ‘too much pressure’ on my pelvis.

To understand what I mean, just imagine the feeling in your muscles after you’ve worked out at the gym. The muscles scream the day after (for various reasons). And the day after that – even more so.

But in that normal circumstance, the pain goes. With chronic pain it doesn’t go, in fact it manifests.

With PN there’s a further impact – signals and functions are affected and I get pretty uncomfortable. One thing leads to another and if I don’t listen to the signals, before I know it, I’m in a fire ball.

I’ve learned to listen (had a few nerve blocks, sat in loads of cold running water) and thankfully the fire balls don’t happen anymore. But other uncomfortable things still do happen – I just have to find another way.

This is what I’ve tried:

  • Walking in various amounts, strides, shoes, places, times and tracks
  • Yoga (which I sometimes practice but can’t sustain regularly)
  • Stretching (forget that!)
  • Various slow/resistance movements
  • Hydro therapy
  • Clinical Pilates
  • Meditation (not exactly heart rate lifting)
  • Dancing

Not only is none of the above possible but even if I could partake in any of the above (in my butterfly way), I’m hardly going to get my heart rate up enough. Continue Reading

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Definitions of pain

What is Pudendal Neuralgia (PN)?
Most simply put PN is Carpal Tunnel in the pelvis/buttocks. Compression of the Pudendal Nerve occurs after trauma to the pelvis and is aggravated with pressure. The pain is often described as a toothache like pain, with spasms, sensations of tingling, numbness, or burning. It can be very debilitating.

What is Neuropathic pain?
Neuropathic pain is the result of an injury or malfunction in the peripheral or central nervous system. The pain is often triggered by an injury, but this injury may or may not involve actual damage to the nervous system. More…

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