15 Things Not to Say to Someone With Myasthenia Gravis

February is Rare Disease Awareness Month, and something that is very close to my heart. In fact, it is the reason I started blogging and sharing on social media. You see, in 2004, I was diagnosed with a rare and potentially life-limiting condition called Myasthenia Gravis. Myasthenia gravis (my-us-THEE-nee-uh GRAY-vis) causes muscles under your voluntary […]

2022 – a year of change

If you had asked me this time last year what I would be doing with my life, and how I would describe who I am going into 2022, I think it would be very different to the reality. My world was thrown into turmoil last year, and I have been slowly trying to find my […]

Profanities for Purpose

#GivingTuesday emphasizes opportunities to give back to communities and causes in safe ways that allow for social connection and kindness even while still practicing physical distancing. Even in times of economic uncertainty, we each have a deep reserve of generosity, which we can deploy in myriad ways to make a difference–your time, your kindness, your […]

Fundraising Like Your Life Depends On It…

We never plan to get sick… especially not with a rare condition or in need of a life-saving procedure that isn’t covered by medical aid, let alone our own pockets. And fundraising to keep living is definitely never thought of! Fundraising has become an important part of living with a rare condition. It has allowed […]

Stem Cell Transplant (Part 2)

I ended my last blog around my stem cell transplant with details about surviving my transplant of magical unicorn blood aka stem cells, and the fact that I could go back home to the people (and animals) that I love. My diet was going to be extremely strict, and I had to be extremely careful […]

15 Things Not to Say to Someone With Myasthenia Gravis

I wrote this blog a few years back and thought it was still pretty relevant…  Even though I am nowhere near as sick with Myasthenia Gravis as I was when I wrote these, there are still certain triggers for me that cause heartache! I have heard all of these at least once and they have […]

Thirty, Flirty & Infertile

***WARNING – this post may be triggering to some*** I never thought this would be my life. I never thought words like infertile, barren, sterile, IVF or failure would form part of my vocabulary when describing myself. I have been wanting to write this blog for the longest time, but have never had the courage […]

Rare Disease Day 2019

Being a #RareWarrior means that today is one of the most important days of the year.  As you can tell by the title, it is International Rare Disease Awareness Day.  Being part of Rare Diseases SA means that I get to see behind-the-scenes & I am constantly in awe of just how much this organisation […]

Stem Cell Transplant (Part 1)

This has been extremely difficult to write.  I have had to relive the most trying time of my life.  I have cried, laughed, & tried very hard to forget certain aspects of my stem cell transplant.  Going into it we knew there was a 55% chance that I wouldn’t make it – I would either […]

Catch Up Time

It has been a while since I have written a blog.  There seems to have been so much going on & at long last I am able to sit back on the couch & not immediately pass out from absolute exhaustion.  I thought it was time to write a little catch up on everything that […]