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Encouraging Self Management

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(Written by me, the founder of {Pain}Train)

That’s easier said than done.

When I first had my accident in 2007 and literally landed in chronic pain, the last thing I expected to hear at any appointment was that I had to manage and coordinate my own treatment.

It was confusing when I was asked what treatment I thought would be best for me to try next – wasn’t the professional meant to guide me?

But a decade later I now finally realise that I was driving my pain management and it was in fact my direction and feedback – from my unique pain experience that was making the difference.

Without the patient reporting their exact experience – which we now know is unique – there’s no way to plan or move forward.

I can’t imagine the complexity a professional faces when trying to help a patient who is unable to articulate their pain experience. But I know this is the general scenario and I know this because I experienced the difficulty of remembering, talking, thinking, documenting, reporting and navigating each minute while living with chronic pain. (more…)

ADF campain: 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.

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’. (more…)

My interview with the ABC 7:30 report

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7-30-report-interview-sm

(View the story online http://www.abc.net.au/7.30/content/2016/s4547621.htm)


Tune in tonight for my interview in regard to navigating practitioners with a chronic illness. On the ABC’s 7:30 report (yes, on ABC at 7:30)

Patient’s have a voice and patient’s can help other patients by reviewing the professionals (and not!) whom they’ve seen. Best of all, patients can do this with their own patient, laymen language.

I wish I had read ‘This practitioner helped me with my sitting pain’ somewhere on the net. Perhaps it would not have taken me 4.5 years to be diagnosed.

Love the idea of whitecoat.com.au. Love the idea of patients sharing their experiences and encouraging great care.

Most of all, it puts the patient in the driver’s seat, eliminates the pressure for GP’s to know everything which is impossible. It’s a patient’s job to look after their health issue and with resources like whitecoat.com.au that can be done.

And no, I never get paid for interviews or to plug someone’s service – this is my opinion.

Resources for Treating Chronic Pain by the Victoria Pain Specialists (Vicpain) …MY pain team!

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Forgive my bossiness but this post comes from a desperate experience that I lived for 4.5 years. That’s a long time for someone with increasing chronic pain levels and not much hope. I felt isolated and alone in a very foreign world without appropriate treatment, compassion and understanding.

Nine years later, I’m hopeful a situation like mine can be prevented with the knowledge provided in the following resources. Vicpain are leaders in pain treatment and management, I can certainly vouch for that!

Please read the resources, learn them, share them… and if you require information on chronic pain, follow Vicpain. (more…)

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. (more…)

Who am I going to be – Soula ‘a’, ‘b’ or ‘c’?

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_Sacral_stim

My new stim’s changed everything.

I’m grateful. Can you imagine if the whole process (from trial to permanent implant) hadn’t change anything?

In addition to the stim changing everything, I’m living a whole new life that Theo and I attempted to plan in great detail.

We’re trying to make me the best I can be so we can be… someway, somehow.

Life is unrecognisable and the path ahead is totally unfamiliar. To top that off, I need to figure out exactly how I can best be. I have choices.

Post op

After living with my sacral stim for six months, I can confirm the following: (more…)

Retrainpain.org

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It’s finally filtering through my brain: It’s going to be VERY hard work most days and it’s up to me to keep my butt in gear and stay on the treatment and management trail.

You’ll all be getting sick of reading my badger about this, but the research is out. Patient experiences have been in the making (for decades now), and the biggest sign that the hard work is cut out for people with chronic pain comes from the many who are now drug dependent with either increasing levels of pain or who sadly have lost their lives – not from the medication – but from the battle.

I get sick of filtering through paragraphs and words and med talk that I don’t quite understand (not to mention the pain levels soar for some peculiar reason) and as an artist, I still find it really difficult to present my pain experience to my readers, family and friends in a simple form.

(more…)

Drug dependency lessons from Pharma ads and my two mothers

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Carrying Dog

I can’t stand TV as it hurts to sit or lie back and watch but recently, while tuning in to one of the very few shows I do watch, I caught a message from a Pharmaceutical (Pharma) advertisement about pain medication.

It made me think about my personal situation and about my two ageing mothers who are in daily pain – both drug dependent and waiting for a pill to pop out of the sky and into their weekly pill box to ‘make them better’.

It made me think about the way they’re currently trying to dodge the countless darts from the ageing process that are coming at them thick and fast – one striking occasionally, that they still somehow manage to catch and quickly tuck under a very thick carpet.

Back to the TV.

(more…)

It’s your patient duty

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I’m guessing this isn’t going to be my most popular post.

I know it won’t be because I view my website and the social media stats and both indicate whenever I blog a ‘to do’ or a ‘too hard’ kind of blog you all seem to drop off.

I completely understand. (more…)

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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 aggrevated 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.

Putting pain management in the hands of the patient

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