Thursday, 5 June 2014

I'm a little snowflake

For the month of June, this will be my Facebook Cover Photo:

I am also a snowflake.  

Not one of us look the same, our symptoms vary, like snowflakes!

I was diagnosed with myasthenia gravis in 2009, after arriving on a visit to Ireland, and struggling to keep my eyes open the next day.  And then I got double vision...45º.  Try driving while closing one eye at a time! For the next two months, I juggled and struggled and fought with doctors, until a neurologist confirmed what a GP wouldn't test for.  He immediately offered me a thymectomy, which basically boils down to cracking your sternum open and cutting your thymus gland out.  

That's me in orange.  See the lazy eyelids?  Looks like botox flopped.

I made all the right noises, took my script for meds, and made for my car.  I started Googling other neuros while driving (see, I had some background knowledge - my sis was diagnosed with ocular MG the year before, and she saw a world leader in the field, so I remembered hat he said).

My second opinion  agreed that a thymectomy was by far not the right thing for me, confirmed the script, and a couple of months later my eyelids had their life back and my left cheek did not freeze on me out of the blue.  
Five years later I am off meds, (but I always keep some with me, in a nifty little pill holder).  I know to pace myself when training, get enough K and Mn with all the other vitamins and paraphernalia, take immune boosters throughout the year and avoid and manage stress at any cost.  

What I am also doing this month, is to crochet a snowflake cowl, in the above blues.  I'm trying out a few snowflake patterns, and have yet to come up with a plan on joining these.

Here's my yarn:

I Love Yarn's Imagine

And here's my first snowflake:

...with some birthday cake at I Love Yarn 'headquarters'.

It's officially winter in South Africa and it's snowing on the southern mountains.

Myasthenia gravis - a chronic autoimmune neuromuscular disease characterized by varying degrees of weakness of the skeletal (voluntary) muscles of the body. The name myasthenia gravis, which is Latin and Greek in origin, literally means "grave muscle weakness."

It is caused by a defect in the transmission of nerve impulses to muscles. It occurs when normal communication between the nerve and muscle is interrupted at the neuromuscular junction—the place where nerve cells connect with the muscles they control. Normally when impulses travel down the nerve, the nerve endings release a neurotransmitter substance called acetylcholine. Acetylcholine travels from the neuromuscular junction and binds to acetylcholine receptors which are activated and generate a muscle contraction.
In myasthenia gravis, antibodies block, alter, or destroy the receptors for acetylcholine at the neuromuscular junction, which prevents the muscle contraction from occurring. These antibodies are produced by the body's own immune system. Myasthenia gravis is an autoimmune disease because the immune system—which normally protects the body from foreign organisms—mistakenly attacks itself.


homemade@myplace said...

You are a brave and positive snowflake Stel !!!!
…..snowing??? BRRRRRR….!!!!! ;oD
xxxxxx Ale

Annie Cholewa said...

I can only echo Alessandra. I have a bunch of auto immune conditions, although fortunately not MG, so I know how much it takes to beat these things. Good for you that you're med free x