TARLOV CYSTS - Canada the misinformed!!!

The rare diagnosis of Tarlov Cyst Disease poses significant challenges in the realm of medical care. Most Canadian Medical Practitioners lack the expertise to accurately diagnose, treat, or manage this condition. As a result, patients often find themselves navigating a healthcare system ill-prepared to address their needs, leaving them feeling lost, scared, and isolated. This lack of medical understanding perpetuates feelings of misinformation and uncertainty among Canadian patients. Through this blog, I aim to share my journey of navigating the Canadian Healthcare system while living with multiple rare disease diagnoses. I have dedicated myself to learning as much as possible about my rare diseases, hoping that my experiences and hard-earned self-education can support and guide others on their own rare disease journey. Together, let's shed light on the challenges those living with rare diseases face and work towards a more compassionate and informed healthcare system.

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Thursday, July 11, 2013

Meet The Doctor Who Thinks We've Got America's Biggest Health Problem Backward!

Once in awhile I come across stories of exemplary courage. Stories I like to share with the hope it will make us think, make us question and encourage, or at least make us consider how we can take part in motivating change capable of eliminating suffering.

I know there's never any straight or simple answers. I know we all have a bias of one kind or another, but I also know that arrogance can be humanities most dangerous trait. It can change or end lives. It can cause unnecessary suffering and it can all too often add insult to injury.

I'm thrilled to share this TedTalk with you, just like it was shared with me by another compassionate rare disease patient.

I hope this talk encourages your to step back and question your own bias and assumptions. I hope it motivates you, just like its motivated me to step back and reconsider my own beliefs that keep me bound in a box while I point fingers and lay blame.

The following quote comes from this amazing TedTalk. It's the words that hit me the hardest, but also reminded me that we're all capable if making changes that could indeed change our own worlds, and the worlds of others now, and in future.


“go back to our original ideals; open mind, the courage to throw out yesterdays ideals when they don’t appear to be working, and understanding that scientific truth isn’t final, but constantly evolving.  Staying true to that path will be better for our patients, and better for science.”
 ~~ Doctor Peter Attia

I'd love to know what you take away from this TedTalk... Share your thoughts through comments!

Enjoy!



Tuesday, April 9, 2013

This Monster Inside of Me, by MJ



This monster inside me laying in wait 
for the slightest 
excuse to flare, 
explodes with gut wrenching lashes of pain, 
no sympathy to spare. 

You can stroke it, pamper it, 
submit to its blackmailing greed, 
but no matterhow careful, 
I cannot appease it; I cannot be freed.

This monster inside of me trapped in his cage. 
All over my body he takes his rage.
Lost in the fog from morning til night
It's hard not to be consumed with fright.

This monster inside, doing its best to cripple,
somedays it takes no more than a ripple.
Because he is hidden no one believes

This monster inside of me makes me grieve.

- MJ

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