Spinal Shenanigans….It’s A Little Complicated

It's official! My spine is full of shenanigans and my Specialists can't quite find a way to fix it, not without creating even more shenanigans. My spine is completely unstable at l4/l5. L3/l4 isn't far behind it but the pain I experience from the severity of the instability at l4/l5, smothers pain I would be … Continue reading Spinal Shenanigans….It’s A Little Complicated

Where’s The “Off The Charts” Rule Book?

(As published on The Mighty) What are the rules for living with a chronic illness or rare disease? Where can I find the rule book to help me manage, especially when all my symptoms are flaring and are "Off The Charts"? This is the question my husband and I have been contemplating over recent weeks. How do … Continue reading Where’s The “Off The Charts” Rule Book?

Finding Your Way Through A Chronic Illness Conundrum

You know that feeling when you are completing a jigsaw puzzle only to find that a piece is missing? It’s a devastating moment. Your stomach turns just a little. All that work, all that effort, all that anticipation of a final outcome. A completed picture was the awaiting reward but it’s been snatched away from … Continue reading Finding Your Way Through A Chronic Illness Conundrum

Accepting Reality

The term "Rare Disease" suggests unknown territory, complications and no easy answers. That terminology definitely describes my rare bone disease. My Orthopaedic Specialist appointment today didn't fully deliver on my great expectations but on some levels it did. It certainly delivered a sense of direction and further understanding of what it means to live with … Continue reading Accepting Reality