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?
Devastating about Lady Gaga. Chronic pain does not discriminate.
It’s not the way I’d prefer people to be educated. I would never want anyone to endure chronic pain but with news of Gaga’s cancelled tour people might believe that invisible pain can be this debilitating. It can leave you hospitalised and/or change your life so much that you no longer recognise it…
(Article from The Guardian Fibromyalgia: the chronic pain that thwarted Lady Gaga’s tour)
Body in Mind posted this excellent research from Marina Pinheiro and Gustavo Machado about the abundant health apps out there; What App is Good for My Back?
Pulse+IT also recently posted their story, There’s a bad app for That.
There are various purposes health apps are made. From where I’m standing, my app was never a promise to solve a health problem – that’s impossible.
I’ve been asked many times why Pain Train isn’t available as an app. Pain Train currently is fully functional as a website on any desktop or hand-held device.
The two main agendas of Pain Train, are: Continue Reading
I’ve been contacted by Sarah Hudson, Media and Content Producer for Say What, a Finnish media company who is seeking to make a realistic documentary about Australians who are battling with opioids.
It’s an issue that requires serious address so please, if you are able to share your story to help reach others – no matter where they may be in the world – please read below and contact Sarah directly.
Finnish TV doco series Say What is visiting Australia and would like to cover some real life stories that go deeper than the shiny tourist images of Sydney.
They’d like to interview and spend some time with someone who is currently struggling with opioid dependency:
“We’d like to hear from you if you’re living that experience at present, or if you know someone who’s willing to share their story”
All correspondence is confidential.
Please email Sarah Hudson directly at email@example.com“
Who are Say What?
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
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 good news is: Continue Reading
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
It all started with emails. I bet most medical professionals felt alarmed as email communication began with patients.
Wasn’t the existing scenario suitable enough? Call the receptionist – make several attempts to get through, rattle off suitable dates, wait for that day to come around, get to the waiting room, sit, sit and then finally release that conversation that’s been swirling in your head… if that’s even possible in the allocated 15 minutes.
I’m sure some medical professionals still appreciate and stick by this scenario. I know quite a few that do.
Isn’t life short enough?
Thankfully, my pain specialist (Dr Nick Christelis), and his team have progressed further, throwing their whole practice (Vicpain) on as many social media platforms as they can. Continue Reading
I can’t recommend Dr Susie highly enough. I wish I had online physical therapy advice when I felt lost, unable to commute and in need of someone who could understand my pain experience.
Dr Susie really gets pelvic health issues and especially for males – oh hoorah, finally someone to help the boys!
Don’t hesitate to organise an online skype session, Dr Susie has a load of support and experience on offer.
(Post written by Dr. Susie Gronski, DPT, PRPC. Doctor of Physical Therapy. Expert pelvic health advice without the jargon)
Soula Mantalvanos has been dealing with pelvic pain for over nine years. She’s an aspiring creative living in Australia. An artist who battles Pudendal Neuralgia through her words & artwork. Soula’s a die hard advocate for persistent pelvic pain sufferers.
She’s also the author of our newest blog post – How One Artist Used Her Hurting Strings To Stitch Back Her Life.