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, March 10, 2011

Act One: scene one - Insurance denial...

Who knew???? The insurance sent me to a bunch of specialists who conveniently said, "there are no signs of any injuries that can be attributed to the specified MVA"...........  Interesting!!!!


I knew the results would be in from the insurance assessments today, and for the first time ever something arrived exactly when the claims adjuster claimed it would. I was impressed for a short moment before the reality hit me of what these assessments actually meant, or could mean to my life. In one quick turn of words, these results could momentarily control the route my life would take in the immediate and near future. Approve; quick effect. Deny; slow stressful effect.  Unfortunately the path I'm now on is the more stressful, later of the two, but thankfully I'm no longer reeling from the shock. Now I'm back in battle mode with confidence fueled by anger, a feeling of unfairness, even perhaps a hint of descrimination and a determination to fight for what is right.


Even though there may be many times when I feel, as I felt today, that God has abandoned me, or chosen me to suffer, he hands me a gift I couldn't currently live without; strength and determination. Everyday for the past year I thank God for the gifts he has given me that enable me to face this fight with confidence. A passion and respect for the power of words, a belief in fairness and personal rights, a quick comprehension and the mental capacity to face whatever may come my way.


I've always believed that everything that happens in life happens for a reason and my current lot in life is a perfect example of that belief. I may currently be weakened by my physical disabilities, but my mental abilities seem to be increasing with each limited achievement. In this situation even little successes mean a lot. During this journey I have experienced a massive amount of small successes some of which include; new friends who understand my illness and the barriers it brings, friends and family who support me and assist me in my battle, finding and being accepted by a Lawyer who gives determination and skill new meaning, and a limited number of specialists who have given me their time, for free I might add, to help educate me on what is happening to my body, how it happened, the factors involved, and the possible outcomes of several different treatment, or non treatment, options. Every lesson learned is one more success to add to the list and I am grateful for every one.


Today I was denied what was right by a system that misleads it's consumers, but tomorrow I will take up the battle once more on the path to proving accountability.


There is no question to whether or not I will win and get what I need and deserve, it's just a matter of when.

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