Soula shares her frustration with pain management and how it lead her to founding Pain Train. In this short video Soula also provides her insight on how people experience pain as well as the personal difficulties she faced communicating her journey at each appointment.
(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. [...]
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 [...]
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 [...]
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 [...]
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. […]
It’s taken almost 9 years but I’ve realised that chronic pain requires alot of study – dare I say never-ending study? I believe my research for pain relief for chronic pain may be paving the way for a thesis! I’ve had a good chat and stare with myself in the mirror, allowed the gut feeling [...]
I know that living with pain for over eight years reduces confidence and belief. It even (warning, I'm going to use the C word), discourages hope for a cure. But how could I have assumed I found my best self for four years (nearly five actually, gulp!)?
So someone got talking to someone on a plane (you know how that story goes, your eyes begin to glaze over because you're in pain thinking 'if this friend tells me I need to meet someone and sustain a new friendship, I'm going to punch him' - but in the end, it works out that you wished you had sat next to that someone on the plane, and you meet that person and you wished you had met them a very long time ago (like eight years ago for me).
Thinning bones at the age of 43. That's not good, in fact I landed, once again, in that unique and very small group of patients with a rare condition...