The Art of Lived Experience
Does my sassiness upset you?Why are you beset with gloom?’Cause I walk like I’ve got oil wellsPumping in my living …
Category Archives: Myositis
Work is Love Made Visible
The years fell quickly away as I walked through the front doors of the emergency department. It felt like only a few weeks had passed.
No Strength to Spare – Measuring Movement in Myositis
My neck felt strangely tired and achy. I had just been for an afternoon walk and was now relaxing, watching the tennis. I struggled to heave myself out of the recliner. As I slowly stood up and stretched, I realised that I was unable to raise my arms over my head. I staggered to the sink for a drink of water, my hips refusing to cooperate by moving.
A Place Not on the Map – Weakness and Pain in Myositis
The first inclination that something nasty was happening in my body was pain – both upper arms and radiating across the top of my chest.
The Hand of God – Reflections on 2025
2025 had started off very well. My muscle weakness from my myositis was well controlled on Myfortic and IVIGs. I was now on a strong anti-fungal to treat Invasive Aspergillosis, as well as Bactrim to treat a possible coexistent Nocardia infection in my lung.
The Art of Storytelling
The young woman who sat down next to me chatted away cheerfully with her nurses. The majority of people around me were usually being treated for various cancers and tended to be quiet and subdued.
Beauty for Ashes 