Looking For The Missing Piece Of The Puzzle

You know the feeling of completing a jigsaw puzzle only to find a piece is missing?It’s a devastating moment. Your stomach turns just a little. So much work, so much effort. So much anticipation of revealing a beautiful picture and this awaiting reward has been snatched away from you!Chronic and complex illness is so often … Continue reading Looking For The Missing Piece Of The Puzzle

An Honest Chat With My Specialist….It Just Can’t Be Fixed!

A week ago I had yet another spinal MRI, my second in three months. Something new happened on the left side of my lumbar spine a few weeks ago, which caused a massive increase in my disability. I can no longer stand for more than 5 or 10 mins at a time, even using aides, … Continue reading An Honest Chat With My Specialist….It Just Can’t Be Fixed!

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?

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