(Posted on pain-train.com.au) As health tech creeps up in the medical industry, it’s becoming clearer healthcare’s direction is changing and PainTrain MHS are thrilled that people are [...]
I've been on the communication case for a while now with PainTrain My Health Summary (PainTrain MHS), as you all know. So when my dear friend (sleuth) and Advisory Member of PainTrain MHS, Mandy Mercuri, sent me news of the Self-Management Navigator Tool, I was thrilled to see it. My professional communication background alerted me throughout my misdiagnosed years (and beyond) that something needed to be done about the ongoing appointments we all have to endure. In my view, the distress of miscommunication, not feeling understood, blank stares, the expense of wasted appointments, and the rest that you are all too familiar with is critical to helping people manage their illnesses. This type of approach is now being embraced, and it will be unavoidable for patients to adopt a new way forward if they are expecting the best care. Sadly those living with an invisible illness can not be passive patients. We have to create and navigate our own individual paths. As if we need more work! But it's genuinely the only way forward.
When viewing my enormous health timeline (pictured), I feel like I've put the information and experience somewhere – it makes it authentic and validates it. Few people validate our experience of living with chronic pain. But this is a way I can validate it and value it. I want others to validate and respect it too. PainTrainMHS helps me do that when I present the information. Showing this to various practitioners and hearing their responses means a great deal to me. It also means a great deal that they grasp an in-depth understanding of my experience. No GP referral letter will ever include this much detail. I always find important information about me has been left out of the letter. All these feelings and activities are part of my pain management strategy – it's not all just about treatment, it's also so much about what I manage day-to-day, and there is so much detail in that day-to-day management. What I also see looking at my timeline is how my appointments have gone from red (bad) to blank (neither here nor there) to green (good). My experience is shown precisely and all it took was a glance. Have a look at how lost I was in the first few years... it was awful!!!!
Lockdown time appears to be crucial for pacing back to whole life. Every lockdown has given me a leap of some kind. I genuinely think lockdown together with my spinal cord stimulation has armed me like never before in this 14-year journey. There are moments I'm so comfortable. Of course, it's seconds and minutes, but it's soooooo freeeeeeeing. I 'just' walk over to get something – nothing is restricting me. No fog, no warning signal; it's just me moving in the space. So I can totally focus on what's in front of me, I can hear the quiet, notice the dust and envisage all the things I plan to do.. to the end! It's an uninterrupted dreamy sequence! If memory serves me correctly, this is a typical experience and a sequence that should be totally taken for granted instead of awed. I haven't experienced this before lockdown. EVER. CHECKPOINT: 14 years, 4 months and 21 days (or 5257 or 172 months, 21 days), I have experienced a short uninterrupted sequence of normality.
How I love mycuppajo – the wonderfully beaming human officially known as Joletta Belton. I was introduced to Joletta's blog by a mutual friend, Dr John Quintner (pain educator for Arthritis & Osteoporosis WA and retired pain physician). Jo's experience (science and creativity) makes her documentation about the complex lived experience real, interesting and easy to understand. It's so easy to relate to Jo. Jo and I also share the added frustrating experience of being an 'injured worker' and having to 'defend' our injuries to unjust workers' compensation systems. Reading Jo's blogs and following her tweets makes me feel I'm walking right beside her, sharing in her extraordinary network of advocates, practitioners, professionals, organisations and of course, kindred spirits. Her advocacy and achievements are extraordinary – she is a force driving change throughout the world of chronic pain. I'm so happy to be able to chat with Jo and deliver this video to you all. I know it will be inspiring, energising and informing. I also know that much of the way through you will have beaming smiles on your faces. It's just impossible to speak with Jo and not smile! Jo provided the below resources which we touch on through the chat. You can (and should!) subscribe to mycuppajo.com and also follow Jo via Twitter @MyCuppaJo
In this video Joletta and chat about:
Alexander Technique is a very special kind of physiotherapy. Well, it's kind of not physiotherapy but rather a guiding formula for your body and mind. When I was in my [...]
Neurostimulation has been key in my management of pain. It's also satisfied my wish to find a way to be as self-sufficient with my management as I possibly can be. My first stim was a peripheral stimulation unit (leads under the skin) and that was implanted in 2011. I still have this unit as a backup. In 2015 I had a sacral stim implanted but that fizzed (in my opinion) within three years. So in 2019 I had the sacral stim removed and replaced with a spinal cord neurostim. WARNING: In the video, I talk about my experience and have a few Xrays pop up to demonstrate a little detail. If you're the squeamish type you may not want to see the images – they are small, however. Read key blogs about my stim implants experiences and adventures:
- My Peripheral Stimulation implant
- Peripheral Stim messing with my bone density score
- My pain management is turning into a thesis!
- Adventures of a stim controller
- Out With the Sacral, In With the Spinal (part 1)
- Out With the Sacral, In With the Spinal (part 2)
- Out With the Sacral, In With the Spinal (part 3)
- Spinal Cord Stim Trial Day 6