Chronic Illness takes many things from us. Some aspects of our diseases we can’t control but there are some we need to find a way to overcome. Over the past six months, I have felt like my disease has been winning. I’ve felt like a prisoner in a body determined to suffocate me. I’ve even … Continue reading I Can’t Give Up…..Please, Let Me Try!
I need time to have fun again, to block out all the "have too's" and spend blocks of time feeling free to focus on unimportant things, trivial things, moments of not worrying about commitments, life stresses etc.
I'm so excited to share with you my interview as a Guest on "I Am Not My Pain Podcast. This is part one, of a two part interview. I was so honoured to be invited by Melissa to talk about my health story, my blog, my book, my forum and even more importantly, how I … Continue reading My Interview as a Guest on, “I Am Not My Pain Podcast” …..With Host Melissa Adams
(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)
Snap, crackle and pop…and just like that I can't move my back. I've been doing reasonably well so it's disappointing when my broken body decides to break a little more, but this is life with a crazy bone disease. I can't thank my beautiful husband enough for his love and support. When you can't do … Continue reading Snap, Crackle, Pop…Caring Love Never Stops!
It was 3am Tuesday morning, 7th September, 2021. I desperately needed to go to the bathroom, so I rolled out of bed, the way physiotherapists had always shown me to do. I reached for my awaiting crutch and made it to the ensuite, not without pain, with my usual pain. I got back into bed … Continue reading An Acute Life Changing Chapter
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!
My Medical Musings 