(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?
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
Finally there is some good news!! I saw my Orthopaedic Surgeon yesterday to review my latest x-rays and discuss the increased pain in my left non union broken femur. So wait for it.....My leg seems to be suddenly attempting to make new bone at the break site, despite the bone graft my Surgeon performed 5 months ago … Continue reading There is some Good News!!
Yesterday I had a really interesting appointment with my Orthopaedic Surgeon. An interesting appointment indeed! It was one of those when you just don't know whether to laugh or cry. My husband and I have a great relationship with my Surgeon and he knows I understand the ins and outs of my bone disease as … Continue reading To Laugh or Cry?
My left femur broke spontaneously on October 6th 2014. It just snapped in two, no warning, apart from pain at the site for a few weeks, it just happened!! From a medical perspective it is a pathological break. We now know I have a rare genetic bone disease. It's The Strongest Bone In Your Body....It … Continue reading The day my femur broke!
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!