A Life Of Love, Laughter, Faith And Hope, As I Learn To Live Again With A Rare Disease
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 6 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!
If you're disabled, or live with chronic illness, you will understand the importance your allied health team play in keeping you functional. They are integral to your overall care and well being. They often become more than medical professionals, they become friends over time as they visit you at home, perhaps weekly or monthly. You … Continue reading Podiatry Panic
No matter what is going on in my life there is always a constant certainty….A cup of tea fixes everything!There is something strangely calming about putting on the kettle, taking out a pretty china cup or mug, anticipating sitting in a comfy chair and slowly sipping this hot delight.It may be coffee, or another beverage … Continue reading A Cup Of Tea Fixes Everything!
March 8th is International Women's Day "Imagine a gender equal world. A world free of bias, stereotypes and discrimination. A world that's diverse, equitable, and inclusive. A world where difference is valued and celebrated. Together we can forge women's equality. Collectively we can all #BreakTheBias.Celebrate women's achievement. Raise awareness against bias. Take action for equality"International … Continue reading #Break The Bias
What a week! Parts of Australia, in South East Queensland and New South Wales, are experiencing catastrophic flooding. It's due to an extreme, unpredictable weather system we are calling a "rain bomb". One reporter said the rain was of "biblical" proportion and I have to agree. I was lying in bed listening to it's intensity … Continue reading Just Because It’s Over, Doesn’t Mean It’s Over
Sometimes, all I need is a teaspoon of strength in the form of little miracles.Living with a chronic disease reminds me of some of my previous plane trips. I’d start off full of nervous anticipation with a little fear of what lay ahead once on board. There were some smooth passages and then all of … Continue reading Teaspoons and Mini Miracles
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!
You would be forgiven for thinking this is a Valentine’s Day post given the title I’ve chosen. Please rest assured it’s not. It’s a continuation of my musings about acceptance being the gateway to a new life. Acceptance is not a sad resignation, it’s the pathway to peace, happiness and freedom from prolonged grief. For me … Continue reading Loves and Losses
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)
Ok, the title of this blog post is probably more confusing than it is enlightening. Let's go for "intriguing" and hopefully together we will unpack it's hidden treasures. I was listening to a sermon on Sunday morning and the preacher made an interesting comment, causing me to listen a little more intently than I had … Continue reading Stones or Balloons?
My Medical Musings 