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

Surgery Can’t Come Soon Enough!

My Spinal Specialist appointment went well. I think that's the best description under the circumstances. I managed to walk to his office using my walker and I thought I was doing well. As I entered his room I smiled as brightly as possible. However the pain in my eyes and my inability to move faster … Continue reading Surgery Can’t Come Soon Enough!

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

There is some Good News!!

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!!