#ShareYourRare
Rare Diseases South Africa NPO 120-991 is a cause very close to my heart. In case you didn’t know, I have a rare disease called Myasthenia gravis and I also work for RDSA as my full-time job. However, I have other rare talents that you may not know about – my husband and I have […]
Denny Adds Goodness
The weather currently is terribly cold. In fact, earlier this week I woke up and checked my weather app – we had a “real feel” temperature of -11°C. Cuddled in my warm bed, under a blanket with my pups and husband surrounding me, I began to think about those people who weren’t experiencing such luxuries. […]
Alaska 5000
This past weekend one of my most favourite people in the world came to stay with us. We joke that we are “sister wives” as she lived with Warren & myself for some time, & we often got odd looks when we went out together. This time together allowed us to really bond & she […]
1917
Last night my husband & I were invited to an evening of Glitz & Glamour to celebrate Oscar Buzz. We got to watch 1917. “ , — . . — . , 1,600 — ‘ .” It really hit me as I was watching this that it was . One of my grandfathers was a […]
Get Me To 21
Even if you are not directly part of the Rare Disease Community, I am sure that you have heard of Jenna Lowe. Perhaps you were even lucky enough to meet this young lady. Maybe you have visited her website, & became an organ donor when you heard from someone waiting for her lungs how dire […]
To the woman at the Gym
About 2 months ago I plucked up the courage to join a gym. I haven’t exercised in over 15 years, & my body has taken huge strain. Having Myasthenia Gravis meant that I couldn’t exercise, as stimulation of the muscles meant that they were weaker overall & it could even affect my lungs & breathing. […]
Catch Me!
“You should set goals beyond your reach so you always have something to live for.”– Ted Turner Life post-transplant has certainly been interesting! I have learnt a lot about myself, as well as others. I have seen where my priorities truly lie, as well as those that would give everything to see me healthy once […]
Bohemian Rhapsody
On Tuesday night, husband & I set off to the Mall of Africa to see the world premiere of Bohemian Rhapsody. Everyone has heard of Queen, & I’m sure has rocked out to their many anthems. Hearing their music evokes so many happy memories, & is constantly the music played at events to get people […]
