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?

Can You Have A Chronic Illness And A “To Do List”?

How many times have you written a "To Do List" this week?How many times have you looked at the list and felt like it's an impossible dream?How many times have you felt useless because you've only ticked off a few items?How many times have you looked at the list and felt like it's been taunting … Continue reading Can You Have A Chronic Illness And A “To Do List”?

Snap, Crackle, Pop…Caring Love Never Stops!

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!

My Latest Podcast…A Dream Realised…I’m An Author!

My Latest Podcast episode is finally recorded... It's been a while between episodes but I've finally found time to record one!!As my book "My Medical Musings" is set to officially launch on May 20th, I share with you my excitement at achieving a lifelong dream of becoming an Author....and more importantly I encourage my listeners … Continue reading My Latest Podcast…A Dream Realised…I’m An Author!

Why Is It Important Your Rare Disease Has A Name? ….It Gives You Validation!

We all know how important it is to be validated. For those of us with rare diseases, or any undiagnosed chronic illness, being validated often means having a specific name for our diseases. Sometimes though there are diseases, recognised by the medical profession, that simply don't have names. They are often called "idiopathic" as they … Continue reading Why Is It Important Your Rare Disease Has A Name? ….It Gives You Validation!

World Rare Disease Day – February 28th (A Guest Post By Gina Baker)

February 28th is an incredibly important day, especially for those of us working hard to raise awareness about rare diseases. February 28th is the global Rare Disease Day. On my support forum, Medical Musings with Friends, I have many members with rare diseases. Some of these diseases have names, some are so rare they are … Continue reading World Rare Disease Day – February 28th (A Guest Post By Gina Baker)

The Most Important Decision When Living With Chronic Illness

We all make decisions every day. Big decisions, small decisions. Some we are aware of and some are just automatic. When I had reasonable health, I would spend my days making business and personal decisions without much effort. Some might have kept me awake at night but not many. I never had to think about … Continue reading The Most Important Decision When Living With Chronic Illness