Snowflakes and Spoons

My experiences with Cyclosporin 2016 At the end of 2015 I reached my lowest point with my battle with MG thus far. I agreed to my Neurologists recommendation that I start a new immunueosupressent, Cyclosporin. In South Africa, it is dispensed through Novartis, under the trade name Neural. It is recommended for MG warriors that have severe and resistant MG. 1   Here are the five most important facts I have learned over the regarding Cyclosporin over the last year.  1) It takes time to start working Once I started Cyclosporin, I did not feel an immediate change. After approximately two months I started to feel some positive spin-offs. I was no longer struggling to swallow and I was strong enough to walk short distances with a cane. After 4 months I felt strong enough start driving short distances and walking independently. Every week since, I could feel my strength improving. I still have flares and bad days, but with pacing, lifestyle changes and res...

Mestinon: Storage and Shelf-life http://www.meda.co.za/ Mestinon (pyridostigmine)  is a lifeline for Myasthenia Gravis Warriors such as myself. I rely on it to keep my muscles functioning and take it every 4 hours. Without it, I can feel my eyes drooping and my muscles slowly turning to mush. When we had a postal strike in South Africa, I ran out of Mestinon. ‘Perhaps in three weeks’ I would receive my medication was their verdict. I had to go from pharmacy to pharmacy trying to source Mestinon at my own cost. After this, I vowed to always have some spare. So on a good day, I would stretch out my doses. I now have about a month’s supply extra. My concern was:  What is the shelf life of Mestinon and can I take it if it says it’s expired. Firstly Storage of Mestinon is essential as to maintain the drug's potency. -          Keep your tablets in the bottle until it is time to take them. I pack my medication out weekly in a medication...

My favorite fluffy chocolate cake! After many Drs visit, decisions and future plans, I needed a break. When starting a clean eating diet the one thing I missed the most was a fluffy piece of chocolate cake! After trial and error, I now have an adapted recipe of my mom's chocolate cake that I can proudly serve to guests. Dairy free, gluten free, sugar-free fluffy chocolate cake Recipe: 250ml gluten free  Cake flour 15ml Baking powder 2ml salt 60ml cocoa 4 eggs - separated 125ml oil 125ml boiling water 5ml vanilla essence 250ml coconut sugar * please note: I added an extra 5ml of Psyllium Husks as my gluten free cake mix did not contain any. Method: 1) Sieve together the flour, salt, baking powder and cocoa into large bowl 2) Separate the eggs 3) Beat the egg whites with a very clean beater until they form stiff white peaks 4 ) Beat the egg yolks 5) In a medium bowl mix the oil, boiling water and vanilla essence and coconut sugar 6) Add the b...

Occupational therapy strives to use a holistic treatment approach to improve a person's day to day functioning. Balancing life and engaging in work, leisure and personal management by teaching new skills or adapting task or environment is a high priority for OTs. By using meaningful activities we encourage clients to live their life to their personal best. This can be done in a group setting or on an individual either on hospital or on an outpatient basis. So what services can an Occupational Therapist offer an adult client with a chronic illness? “As much as 90% of the management of a chronic condition must be performed, not by health care providers, but by the person who has the condition.” ‐ California Healthcare Foundation, 2008 whether it's managing your medication, putting on your own socks or remembering where you left the keys OT is the profession to help you. Here are 10 other topics that an OT can include in your treatment:       1)  ...

Adaptive Reading Strategies  I recently came down with the flu. After a few days of sleep, social media and TV I was frustrated and bored.  I used to love to read. To hold a book in my hands and escape into another world. Having some time on my hands, I was able to come up with several strategies to get back into this hobby and conserve my spoons. I have put together some ideas to help it easier to maintain strength and focus when reading. Visual Fatigue:  Visual fatigue and drooping eyelids are two main symptoms of ocular Myasthenia Gravis. A highlighted reading strip helps you to remain focused and assist your eyes to track the sentences. You can make one by cutting a coloured transparency sheet into strips and taping masking tape along the borders. Alternatively, you can purchase one online. Magnifying glass to enlarge text decreases the strain on your eyes. Double vision can be combated by using an eye patch to cover one eye. Muscle fatigue:...

Why is work important? As occupational therapists, we regard individuals as occupational beings that benefit from active engagement in meaningful occupation  1 . A meaningful occupation does not need to be paid or formal employment. The key here is that it needs to be meaningful. You have to enjoy, value, be inspired and look forward to doing it. If we are able to engage in this type of work it is noted that you have a higher chance to not just live successfully, but thrive 1 . Advantage of meaningful occupation:           Beneficial health ‘spin-offs’ 2,3          Achieve individual and social change 1         Freedom of choice = ability to experience well-being 4           Allow you to become more self-directed 5          Develop a sense of agency 5          Develop a more positive self-view 6      ...

Connect with me on Facebook : https://m.facebook.com/snowflakesandspoons/ I'm no longer a slave to fear… How do I go from singing this song on Sunday to actually believing and living it out on Monday? It's so easy to seem confident, raising my hands and proclaiming this when I'm safe and protected. It's not so easy to remember this in the face of fear. On a closer look at the lyrics, they don't state 'I am no longer afraid', but rather that 'I am no longer a slave to fear'. Being a slave means being bound and forced to participate in actions without free will. "There is no fear in love, but perfect love casts out fear; for fear has to do with punishment, and whoever fears has not reached perfection in love." ( 1 John 4:18 ) What are you afraid of? Sickness, violence, spiders? Being a slave immobilizes us to fully participate in life. We struggle to move forward, to be confident. It makes us anxious and we feel betrayed. Fo...