Snowflakes and Spoons

Married to MG This month I will be married for seven years and seven months! It still seems like yesterday when I walked down the aisle towards you, my husband to be.  Before we got married, I said that you were getting a raw deal on the ‘sickness and health’ section of the vows. Still, you had the biggest smile when you whispered the vows back and placed a ring on my finger. Like anyone with chronic illness I wonder about your choice. Will you get tired of me and my hospitalisations, doctors visits and tablets? Our marriage hasn't been without its challenges. However the things you say bring a smile to my face and an understanding of a deeper love to my heart. Here are the top 5 things that make me smile! -    Let's take the matches to bed, my *prompe princess Intimacy can be a tricky thing with an unpredictable stomach. The nights when I'm  particularly flatulent a box of matches comes in handy when cuddling! (*Prompe is a...

Help I'm growing a moustache! And the other wonders of medication side effects. The handful of drugs I take daily cause me both joy and pain. My success that can be seen externally is often compromised by the hardships I suffer personally. Juggling this is my daily warrior mission. After 4 months of being on my new immune suppression drugs, I am starting to feel less like a rag doll and more like a functional human. I can once again climb steps, drive and shop independently. My brain fog has slowly slipped away and I'm coping better at work. I can smile and my eyes don't fatigue as quickly. Best of all I'm wobbling around the agility field (can't call it running just yet). I wanted to write this post about helpful hints on how to deal with common side effects. I realised that many of the strategies I use are band-aids. Prevention when dealing with side effects seems almost nonexistent. It's a game of let's see what your body reacts to and t...

Speaking your mind!   *In South Africa to dis something is to show disrespect Approximately 100 muscles of the chest, neck, jaw, tongue and lips are needed to work in a synchronised manner in order to produce one sentence (1). Being able to communicate is an essential part of human existence. Speech is a main source of communication, however thankfully not the only method. When in crisis, the muscles activating speech are also affected. While I might  sound like I'm drunk or that I'm trying to talk while playing the game chubby bunny, I am actually trying my best to get my message across. The first time I had speech difficulties was when I was trying to help my younger sister with her  math homework. She thought I was making fun of her as my voice changed to a nasal squeaking/strangled duck sound. In the moment I couldn't even explain, all I could do was wait until my muscles were slightly rested and then explain what had happened. The second time,...

How Snowflakes are formed Myasthenia Gravis (MG) is a chronic autoimmune neurological disease. (1)   What a mouthful! It has a world prevalence of between 25 and 142 per million  (2) indicating that those affected, especially in South Africa, are few and far apart. MG is often called the snowflake   disease   due to the fluctuating symptoms experienced from one person to another. Each snowflake has a similar primary ice crystal base, but the internal order of the primary crystal, and exposure to different atmospheric conditions during the formation of its crystal arms results in its unique appearance.  (3) S imilarly, MG is normally identified by muscle fatigue and weakness; this would be the primary crystal  (1)  . Each individual's genetic make-up, the internal order of the crystal, and their unique environmental and lifestyle stressors, the atmospheric conditions, results in each MG warrior's unique set of symptoms....