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

A new fantastic Physiotherapist ~ Outcome = Work in Progress!

 Today was my first session with my new Physiotherapist. What an amazing find she is. It turns out she has a special interest in auto immune diseases. She knows all my Specialists and completely understands my overall health issues. I was just so pleased. Not only that but she took the time to work today with my … Continue reading A new fantastic Physiotherapist ~ Outcome = Work in Progress!