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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Tuesday, October 19, 2010

The Beauty of Canada…….. It’s not all bad.

Canada is a gloriously, wonderful place to live. I am so very grateful for the many things it has to offer its Citizens, of which I am proud to say I am one.

Over the years I’ve driven from one end of this Country to the other. I’ve laid on the sands of Long Beach, BC and watched the sunset over the Pacific Ocean. I grew up surrounded by the raw, unspoiled nature of Newfoundland where my passion for natural beauty began. I’ve seen some of the most amazingly beautiful places in our Country. I’ve tasted most of its multicultural, flavorful fare and gratefully experienced most of Canada’s natural pleasures. If you haven’t experienced this country yet then maybe that’s a vacation you should seriously consider. You’d be amazed by the splendor and simplicity our Nation offers within its borders. The possible experiences that lay before you are endless and the memories you could earn can comfort you throughout your life. My memories comfort me daily.

As my body betrays me, limiting my daily activities, I sit back and remember the places I’ve been and the things I’ve seen. I remember how I closed my eyes in that amazing moment in time, digesting all of the sounds and smells surrounding me, while my imagination developed a snap shot of that exact moment. Thank god for my gift of creativity; it gives me the power to envision my surroundings and relive the moment better than any photo ever could. 

I remember being able to walk without pain. I remember the feeling of climbing over wet, ocean sprayed rocks softly enclosed in layers of cushioning moss. I remember how strong I felt as my body moved to compensate for every angle, twist and turn; I remember doing it all without even a hint of fear. 

I can close my eyes and feel the soft decaying Newfoundland soil under my feet as I walked through the bush that surrounded my home. I remember the smell of the surrounding Atlantic Ocean every time I walked out my door and the freshness of the trees and earth after a light summer rain. I remember loving and valuing every moment and feeling the pride of knowing I am part of that land. No matter where I go in the world, I am and always will be a Newfoundlander, and a Canadian. Now all I can do is sit here, remember and write about it, bringing it all back to life in my head and my words. It’s a pleasure that gives me a way out of the painful, frustrating life I live now.

But I assure you, I have not and will not give up my dreams, or even the dream of the experiences I still hope to have in the future. I will always fight for the solutions to my illness that will provide the opportunity to get back to the things I love. While I wait I’ll just remember what I’ve been lucky enough to experience in my past and look forward to what is yet to come.

Tuesday, October 5, 2010

Why?

Every morning I wake up at around 6am and sit here wondering “What am I going to do today?” Everyday looms ahead of me like a black, empty, void. I have no idea of where I’m going, why I'm up so early and no idea of what to do to fill my day and challenge my mind.

I like to feel challenged, yes challenged, not frustrated. I enjoy learning and I miss the feeling of moving forward in my life. I know, I’m not going backwards, but I’m not going forward either. I feel as if I’m just…. here, not going anywhere.

I can’t work. Or at least I haven’t found anything that I can fit into so far. The way my illness works makes it a little difficult to make plans, commit to or promise anything. From one day to the next it’s all about how I’m feeling at the moment. Some days its migraines, the next it’s unbelievable nerve pain, then it could be complete, all over body pain. I can’t sit for long, some days not at all. I can’t stand for long, but again some days I can hardly stand at all. I can't use my arms in repetitive motion and I can't walk for long. So as I’m sure you can see by now, although maybe never really understand, it’s hard to move forward. 

I’ve tried pain medications, but Tylenol does nothing for me anymore, and I have a severe and nauseating reaction to Opiates. I have a Liver problem that limits the medications I can take so it’s kind of like a catch 22. 

I feel stuck within the limitations of my own body. So far no one, including my Physician has been able to come up with anything to make it any better, or to give me more freedom and flexibility. So I just sit here trying to fill my days with things I can do and this Blog will be one of them.


There is an extensive list of Canadian issues that has created many barriers to my ability to move forward. That’s why I’m doing this blog and trying to focus on those issues.

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