Red and the Big Bad Wolf

The story of me – Red living with Myasthenia Gravis or the 'Big Bad Wolf' as I prefer to call it

I am a young women from South Africa and I suffer from a rare autoimmune disease called myasthenia gravis, a more common autoimmune disease called sjögrens syndrome, as well as another chronic disease fibromyalgia.

How I came to name my blog Red and the Big Bad Wolf is part of my life story and this I will explain more below.  I must admit that at one point I considered changing the name of my blog to match my evolving life story and multiple diagnoses. But, I came to realize that my life story will always evolve and that I can’t change the name of my blog (my identity!) on a continuous basis. In addition one of the key symbolic principles behind the name of my blog remains in place – Like little red riding hood in the fairy tale who had to fight of the big bad wolf that invaded her life, I am a young women who has to fight off the big bad invasion in my life that is myasthenia gravis and fybromyalgia – every day. O! And I am a natural red-head too! So it all makes sense! 🙂

If you read some of my blog posts you will discover that I have been through years of different medical diagnoses – sadly all wrong – until I was finally correctly (I still hope so!) diagnosed with myasthenia gravis and fibromyalgia; and recently sjögrens syndrome.

At one point there was a fairly confident diagnosis of lupus – or more specifically systemic lupus (SLE.) After years of incorrect diagnoses and treatment I was so relieved to have a ‘final’ diagnosis, although it was not a great one. I tried to accept it, process it and heal by starting a blog to share my diagnosis story and subsequently Red and the Big Bad Wolf was born.

Why the wolf connection you may ask? Well, lupus is the latin name of a wolf – canis lupus. And this was because it was thought in the olden days that lupus was caused by a wolf bite! (It screams of fairy tales and the supernatural, right?! :))

In terms of the goals of this blog, my own healing is not the only goal. It is really important for me to achieve the below goals as best I can:

a. Help others suffering from myasthenia gravis, sjögrens syndrome, fibromyalgia or another chronic disease by sharing my story and how live my life with these diseases. I found it has helped me tremendously to know that I am not the only person facing the challenges that I do. And that I haven’t imagined them!

b. Share information on myasthenia gravis, sjögrens syndrome and fibromyalgia.

c. Connect to and obtain feedback from other chronic disease sufferers that could be helpful to me, but that I in turn can share with others to help them. Going full circle.

d. Create a safe and judgment free place for other chronic disease sufferers to share their opinions.

e. Create awareness of myasthenia gravis, sjögrens syndrome  and fibromyalgia – especially in South Africa. My primary focus will be on myasthenia gravis as it is such a rare diseases with risks around every corner.

My blog will feature (some what anonymously) the characters of my life story and my incredible support network, which includes my merry band of men, my Mom, Sister, family, friends and Doctors. Without their love and support I would not be where I am today – in a position most fortunate despite the diseases. I am a women trying to make lemonade out of the lemons that life has handed her and they help me to squeeze those lemons! Easy peasy lemon squeezy! 🙂

My band of merry men are the three special men that live with me and bear the brunt of the impact of my diseases. Perhaps not my dog children (Paddington and Bear) so much, but definitely my partner. I know that I am overwhelmingly blessed to have him in my life and eternally grateful for his patience, sacrifice love and support. The Viking as I will call him here (as he is Swedish :)) is one of the best things that ever happened to me and taught me that suffering does not have to go alone – it can be accompanied by great happiness!

Thank you for taking the time to read my blog. I wish only good health and happiness for you. 🙂

XO

Paddington and Bear. Paddington is a Beagle and Bear is a Cavalier King Charles Spaniel. They are 1 year old. XO

Paddington and Bear. Paddington is a Beagle and Bear is a Cavalier King Charles Spaniel. XO

 

 

 

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