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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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EPIc Women’s Retreat – Snow Mountain Range

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Women’s Retreat for women living with pain

October 13th–15th 2017
YMCA Snow Mountain Ranch in Grand County, Colorado
1101 County Road 53, Granby, Colorado 80446

The next Women’s Retreat is in October 2017. There are only ten spots available and registrations are accepted based on availability.

The Women’s retreat provides experiential learning in a safe, serene, supportive and natural environment. Guests are free to be themselves, are heard and understood and are supported and encouraged in beautiful surroundings.

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Your Pace Yoga: new videos

Author:

Dustienne Miller

This is exciting. I’m republishing my post from way back when I just began to manage some yoga again.

I have maintained Dustienne’s program – albeit a small 20 minute portion – it’s still mammoth for me.

Dustienne has now produced more pelvic specific yoga videos and although I might not dare try anything new just yet, I had to share these with you all as they sound great:

Listen to your bod… go slow!


(Read the original post) Continue Reading

Yes, it is like taming a beast

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You’ve all heard the impact Prof Lorimer Moseley made on my pain journey – well my diagnosis actually.

If it weren’t for him I wonder how much longer I would have been left searching for the reason behind (pardon the pun) the pain. It took 4.5 years!

Lorimer’s research continues and this time he’s teamed up with some fabulous physiotherapists to make a lighthearted – but still serious, animation about chronic pain.

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God, I’ve founded a better way to do things

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No, I’m not about to preach about finding God. I mean the other God – your health professional.

I’ve had many dilemmas trying to manage chronic pain.

The obvious ones relate to seeking appropriate treatment and managing life – money, bills, commitments, family, friends… if you’re reading this, you probably know how that paragraph ends.

But I’ve had an additional, personally inflicted dilemma and that’s to make something of my situation and further still, have the experience validated.

I don’t think we can control self inflicted dilemmas. In fact it’s hardly a dilemma, it’s more like a personal trait that I owned long before my injury.

pudendalnerve.com.au‘s vision is focused on positivity and I’ve adhered to my mission to help others with chronic pain (and injured workers) through my personal experience.

I’ve taken that one step further by founding Pain Train – an online health record website for people exactly like me. Continue Reading

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. Continue Reading

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.

Back on the treatment trail

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VicpainHomeScreen

Maybe I should have titled this post, ‘Back on Pain’s roller coaster‘? But then I’d have to explain my position – which would it be? Up or down? Or is this another case of in the middle – managing?

I have many descriptions for my health status and they are constantly revolving around in my head. That’s because I don’t know where I ever stand with this chronic pain. And there seems to be no one else who knows where I (or you!) stand either. So damn frustrating.

But last year, I got fortunate. Someone planted a seed… Continue Reading

‘Ouch’ just doesn’t cut it!

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I-feel-so-frustratedAnd neither does repeating, ‘it burns’, ‘it itches’, ‘it’s like fire’, ‘I get spasms’, or the various other words people in pain have to repeat for each consult in the effort to be understood.

Pain Train’s whole purpose is to help patients and their pain management teams communicate beyond these basic words. Pain Train saves the patient the additional pain of having to repeat their history and other related details at each appointment.

Pain Train offers patients a way to also show their friends and family their profiles in the hope they can also better understand their loved one’s experience. 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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