A Life Of Love, Laughter, Faith And Hope, As I Learn To Live Again With A Rare Disease
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
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!
(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 Where’s The “Off The Charts” Rule Book?
You know that feeling when you are completing a jigsaw puzzle only to find that a piece is missing? It’s a devastating moment. Your stomach turns just a little. All that work, all that effort, all that anticipation of a final outcome. A completed picture was the awaiting reward but it’s been snatched away from … Continue reading Finding Your Way Through A Chronic Illness Conundrum
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!
Saga by definition means, a long story of heroic achievement or, a long story full of incidents. This story is definitely the latter, no heroics to be found I assure you. Rewind three weeks ago and I woke up to find I couldn't turnover in bed. I had pain in my right lower back that … Continue reading A Spine Tingling Saga
I was sitting at our local cafe this week, which is situated on a Point overlooking the Bay and beautiful Islands beyond. It really couldn't be more idyllic and I am blessed to live so close to such a gorgeous place on Australia's east coast. As my husband and I were sipping our cool drinks … Continue reading The Tides of Chronic Illness
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
I've had a week of surprises. I should be used to the unexpected by now and generally I am. I take the shocks and twists and turns my body throws at me in my stride most days, most weeks. This week felt different though. Two weeks ago I felt a snap in my left foot. … Continue reading From Chaos to Calm
I left my Orthopaedic Surgeons office yesterday with a spring in my step which is quite an achievement on two crutches. I have been given a leave pass. A holiday. A break. A good break, not a leg break 🙂 6 months of no leg xrays, surgery or appointments with my Surgeon. He is giving … Continue reading A Break of a Different Kind
