February 24, 2017

OH CANADA - CALL TO ACTION!

{Oh Canada! True North strong and free}


Did you know children, age 5-14, are at greatest risk of contracting Lyme disease - a serious infection contracted from a tick bite?

Did you know that Lyme is the fastest spreading infectious disease in the world & research suggests that 80% of Canada will be at risk of exposure by 2020?

Did you know there is no reliable testing currently available to diagnose it & most doctors in Canada are not adequately trained to clinically diagnose or treat it?

Did you know that Lyme can become a debilitating chronic illness if it is not diagnosed promptly and treated adequately?

Our family, along with thousands of others, lives with the devastating & life altering consequences of misdiagnosis and delayed treatment. It is a travesty that we do not want to see other families endure & so we have fought long and hard for awareness, better diagnostics & treatment in Canada for many years.

As a result, in 2014, BILL C-442 was passed into law requiring the Canadian Government to come up with a Lyme Action Plan & federal framework to address this growing public health crisis.

A draft of that framework (click here to read) was released on February 7, 2017 for public comment. The Framework fails to take real action, has no funding, does not address the issue of testing and fails to protect Canadians from Lyme.

Anyone, anywhere can contract Lyme...The health of our nation; our families & Canada's future, our children, are at risk.

We need you to sign this petition before March 1, 2017 to demand this draft Framework be rejected in its current form. The govt must be held accountable in delivering a plan that will protect us and our children & ensure a future that is healthy, strong & free from the stigma of Lyme.

https://www.change.org/p/minister-philpott-ticking-lyme-bomb-in-canada-fix-canada-s-lyme-action-plan-now

Sign the petition & join the more than 30,000 Canadians who have already signed. Please feel free to share this post!

{Ensuring a bright future for all our children is the responsibility of the community, schools, families & like it or not, politicians as well.}

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Click here to read: Lyme disease sufferers devastated by federal government's action plan


A message from the Canadian Lyme Disease Association (Canlyme.com):

As per the requirements of Bill 442, An Act respecting a Federal Framework on Lyme Disease Health Canada held a conference on Lyme disease in May of 2016.  It was a well balanced conference that revealed significant divergent opinions among experts on the most important issues to the affected Canadian… diagnosis and treatment.
Without engaging the stakeholders for input, the Public Health Agency of Canada has written a draft version of the report that is to be presented by the Minister of Health to parliament by May 15th of this year.  Rather than follow the good faith intent of the legislation that would have seen good robust discussion on the wording of the report, the federal bureaucrats fell back into their closed door non-transparent in-house mode of operation.

The report in no way meets the mandate of the legislation.  It ignored everything that was presented by experts and patients at the legislated May 2016 conference. It is NOT a framework and there is nothing to build upon.  It has to be set aside and rewritten with the patients and their experts.

Please read the wording of the framework carefully, specifically Sec 3.
” … for the purpose of developing a comprehensive federal framework that includes
(a) the establishment of a national medical surveillance program to use data collected by the Agency to properly track incidence rates and the associated economic costs of Lyme disease;
(b) the establishment of guidelines regarding the prevention, identification, treatment and management of Lyme disease, and the sharing of best practices throughout Canada; and
(c) the creation and distribution of standardized educational materials related to Lyme disease, for use by any public health care provider within Canada, designed to increase national awareness about the disease and enhance its prevention, identification, treatment and management. 


The draft report that PHAC has written HAS MET NONE OF THE REQUIREMENTS LAID OUT IN SEC. 3 and it certainly was not consultative. .


February 15, 2017

WHEN IS ENOUGH, ENOUGH?


It’s hard to offer peace to the world around you when you’re doing battle with your own heart. And it’s hard to feel what you need to feel if you’ve labeled some feelings unworthy or unacceptable. What we all need is to feel a little more okay with what is. Not just the pretty, blessed & grateful, but also the gritty, messy & raw. ~VE}


My Sparky boy is so ill. So very ill. The latest? Bacterial Pneumonia. This follows close on the heels of him having the Norovirus & Influenza and a few other unnamed viruses. Add insult to injury, lyme rages on. 8 yrs of hell. No end in sight. Last night it put him in the ER. The degree & extent to which he suffers is maddening. Gutting. I am so angry & so grieved by the sh*t he endures. By day, I find myself storming around the house slamming cupboard doors & cursing under my breath. By night, I weep in a crumpled heap thru the dark. There are no words... only a seething anger burning deep in my bones. 

When is enough, enough?

I have silenced my pain, my brokenness, my rawness. Shut it down. Covered it up. Judged it harshly. Because who wants to put their broken dreams & fragmented faith on display? Who wants to write about the battle in the middle of the battle when your bleeding out & have nothing to offer but raw, embittered rants? What good can come of that? And yet...here I write.  



For among these winters there is one so endlessly winter that only by wintering through it will your heart survive. ~Rilke


I cannot be alone in this wasteland, this eternal winter that knows no end. I cannot be the only one who has felt confounded by the horrors of suffering. I cannot be the only one who has felt abandoned by god. Unseen. Unheard. Unloved.  Is this a narrative that was always in me or have years of witnessing the unrelieved, private agony of my child created it? I cannot be the only one who has wrestled with the weight of this. I can't be the only one hemmed in by the bitter, biting assault of suffering.

I cannot be the only one who's kid can go weeks, months, or even years with little to no contact from the outside world. I cannot be the only one who has stopped sharing the hard stuff because I can no longer tolerate the platitudes or praying for you responses. Not when my kid is bleeding out with a soul atrophied from lack of companionship within his suffering. Prayer does not dry tears, bandage wounds or put food on the table. In fact it is salt in the wound - when one has spent years splayed out on the floor praying, begging, pleading for a reprieve to his suffering. And no relief comes. The perceived silence of god broken only by the anguished moanings of my child. No mercy shown.

When is enough, enough?

I  cannot be the only one who feels let down, even abandoned, by the church. I cannot be the only one who violently recoils at the theories on suffering; This'll make you stronger. God must have a really big plan for ur life. There is a purpose to be found in his suffering. Hearing these theories makes me want to vomit. I get that they are meant to comfort but suffering does not make sense & wrapping up the horror of it with a pretty theory bow can be destructive.

So, no, I do not have peace to offer. I have only the raw unbridled questions of a mother whose child lives a tormented existence. One day this may all make sense. But right now it does not. It hasn't for a very long time. And god feels very far away. And I have silenced this agony for far too long. Scared of judgement. Beholden to assumptions that I am strong & full of faith, I've stymied my doubts & hurts fearful giving them a voice would provoke the same in another or offend. The world has enough anger. Why add more? Yet, in doing so, I discount, denounce, & devalue this part of my journey.

This is the battle. In its rawest form.