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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Monday, July 30, 2012

Sometimes We Have To Stop And Smell The Roses.

A Link To Some of the Most Amazing Beauty Our World Has to Offer...


Please Enjoy Then Share. 
Put a smile on someone else's face.

Monday, June 18, 2012

For Americans in Pain please support this US Petition: First Do No Harm: The DEA targets Physicians who treat their patients pain.

Canadian chronic pain sufferers aren't the only ones suffering from the new, and often excessive prescription controls that are currently threatening Physician interest, or willingness to provide proper pain management to those in need. According to Science Daily the US is also following suit; or perhaps we're following them?  

Either way, pain management for patients living with multiple levels of chronic pain are being attacked by Government policies in an attempt to crack down on illegal drug use by way of prescription drugs. 


As a chronic pain sufferer this is definitely the last thing I, or anyone suffering the tortures of painful, often untreatable disease needs. Not only are we forced to suffer from horrendously painful diseases that no one seems capable of explaining or understanding, but now the only recourse left to us is being monitored to the point of fostering fear of recrimination, or undue stress leaving many Physicians to wonder if the possible impact is worth the effort. 


In too many cases patients in need of pain management already suffer through improper care due to personal attacks by being tagged as "druggies, or "addicts" looking for a fix! In addition, many chronic pain patients are tagged as "hypochondriacs" suffering from psychiatric illness and the recent increased prescription oversight is now adding to what was already a challenging issue. With these types of barriers where are legitimate chronic pain sufferers to turn? If neither Doctors or emergency rooms are willing to provide what the patient actually needs, where are pain sufferers to turn? What are we to do with this debilitating pain we're forced to live with? 


I have personally witnessed what addiction can do to a persons life, not to mention the effects the addiction has on the lives of those around them. Through experience I can certainly understand the need for some control, but where do we draw the line? Where is the accountability to the Physicians whose loss of professional ethics encouraged and allowed access to these highly addictive prescription medications? Who should actually be paying the price for these mistakes? I may not know that answer, there's certainly still work to be done, but to allow the chronic pain sufferer to suffer more than they already do is definitely the wrong way to go.


So please, sign the petition and add your name to the growing list of citizens who already signed thanks to their understanding of the issues. Please support chronic pain sufferers in their fight for fairness.

Petition 2 Congress: First Do No Harm

Tuesday, June 5, 2012

Societal Impact On Pain




"The Societal Impact of Pain in Europe" - 

Friday, 23 September, 2011
The World is slowly getting there. We're learning about patient realities, now if only we could get our governments and disagreeing medical professionals on board.

The Video above was for Europe,
The Video below was for Canada

COMING SOON!!

"The Canadian Pain Summit in Ottawa, ON"
April, 2012

Thursday, May 31, 2012

Health Cuts Threaten Chronic Pain Clinics

As if we don't already have enough problems!!!!

Tarlov Cyst Patients across the Country have been fighting for Out of Country Care for many years, and while we still haven't gotten far in our effort for change, and increased options for relief we're forced once again by the McGuinty Government and Deb Matthews, Ontario's Minister of Health, to accept even more cuts to the only solution we have left?

Now they're targeting Pain Clinics and our chance at living a somewhat, normal life.

According to Simcoe.Com, an article written by  Chris Giorshev, MD Tariff Chair, OMA Section on Chronic Pain Medical Director, The Simcoe Clinic, Chronic Pain Care "Chronic pain clinics in Ontario may be forced to close due to new government fee cuts.  Patients will be abandoned and healthcare costs will rise. This is bad news for everyone. Chronic pain in Ontario is a serious problem." 

In addition, the letter states these changes will affect 15-19 % of the population making chronic pain more common than asthma and diabetes. He believes the consequences can be devastating when you add the increased rates of suicides and depression that chronic pain patients suffer.

According to the May 24th letter, "Canadian, workplace costs associated with chronic pain cost the system more than $37 billion per year and their healthcare costs are staggering at over $7 billion per year.  Fortunately chronic pain clinics exist to address these issues."


Please visit the article at the above link to read this letter in full.
Tarlov Cyst Disease patients are but a few of the rare disease, and chronic pain sufferers that will be affected by this massive round of cuts. So as Chris Giorshev says in his letter to Simcoe.Com, please do what you can to let the government know that chronic pain patients deserve to be treated properly.  
Contact your MPP. It’s in everyone’s best interest. 




Ontario Health Coalition: Ontario-Wide Tour to Visit 15 Communities Warning of Ontario Budget Cutbacks to Health Care



  • Ontario-Wide Tour to Visit 15 Communities Warning of Ontario Budget Cutbacks to Health Care 
    Most Ontarians don’t realize that the McGuinty government’s recent “austerity” budget will catapult the health system into another round of cuts and restructuring. With this warning, the Ontario Health Coalition is launching a 15 city tour across Ontario to prepare citizens to stand up and protect local access to health care services. The government’s budget for health care is worse than even the most radical of recommendations. With the harsh new budget, the government is planning another major round of cutbacks and restructuring that will particularly hurt patients who need hospital care, nursing home placements, outpatient clinics and long-term care. We are holding a town hall meeting to discuss the government’s plans and what they might mean for our local communities. We don’t want to see any more hardship as a result of patients unable to access the care they need. With the town hall meeting, we will launching an action plan to protect each region’s health services from further cuts.

    Please click below for our full media release and *updated* details of the tour

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