Part Two of My Interview as a Guest on, “I Am Not My Pain Podcast”, with Host Melissa Adams

I am so excited to share part two of my interview with Melissa on her podcast, "I Am Not My Pain Podcast". In case you missed part one, which includes my introduction to Melissa and how we met, here is the link to my blog post containing everything you need to know, including the Podcast … Continue reading Part Two of My Interview as a Guest on, “I Am Not My Pain Podcast”, with Host Melissa Adams

A Year Later…One Step, Two Steps…Will There Be A Third?

Some dates are forever etched in our memories. I have a few but there are two I will never forget. October 6th 2014 is the first. It was the day my femur broke.   It was a life changing day. A day that would start me on a journey with a rare bone disease, so rare that … Continue reading A Year Later…One Step, Two Steps…Will There Be A Third?

My Chronic Illness Rule Book ….(My Four Day Rule)

(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 My Chronic Illness Rule Book ….(My Four Day Rule)

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!