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!

Hard Work In Hospital

Some challenges in life hit us so hard, as we never saw them coming. Such challenges don't allow us the luxury of preparing ahead of time. They give no warning. They simply arrive! My "acute" spinal collapse , would prove to be one of the hardest challenges I have ever faced, and I've documented a … Continue reading Hard Work In Hospital

An Acute Life Changing Chapter

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

MRI Marathon

"Hello, you're back again, so nice to see you, how are you?" You'd be forgiven for thinking this warm greeting was being given by a friend, a colleague, or a local shop owner who I'd known for years. This was the greeting I received by the Radiologist at my hospital, when I arrived for my … Continue reading MRI Marathon

A Hospital Stay To Remember…..Or Perhaps Forget!!

For 8 days in November 2017 I lay in a hospital bed basically writhing in pain. Rewind to the beginning of that 8 day period and I was being rushed to hospital in an ambulance as my left leg, the one with the non union femur fracture, was like a wooden block and it would … Continue reading A Hospital Stay To Remember…..Or Perhaps Forget!!

“Where There’s A Will There’s A Way”….Is It Really That Easy?

I was loading my dishwasher this morning and fighting with a plate refusing to fit in. It wasn't really the plates fault. I was in severe lower back pain and trying to get the task over as quickly as possible. I was also trying to fit way too much into this particular load.....as you do!! … Continue reading “Where There’s A Will There’s A Way”….Is It Really That Easy?

A Cheerful Approach To A Chronic Situation

A cheerful look brings joy to the heart, and good news health to the bones. Proverbs 15:30 It's a gorgeous morning. The sun is shining, the birds are singing. I can hear neighbours chatting as they enjoy a morning walk and a cool gentle breeze is blowing through my bedroom window. I'm resting on my … Continue reading A Cheerful Approach To A Chronic Situation

Bigger Isn’t Always Better In Life

Bigger isn't always better in life. I'm not talking about weight size or the size of your bank balance or home, I'm talking about bigger bones. If you research bone disease on "Dr Google" you'll find copious amounts of information about Osteoporosis, low bone density and the importance of having good healthy bones. Try researching high … Continue reading Bigger Isn’t Always Better In Life

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!