tag:blogger.com,1999:blog-10326807525227879002024-02-21T20:30:51.788-08:00Ticks and TrustFIGHTING LYME WITH A FEARLESS HEARTs.http://www.blogger.com/profile/02214787682053856588noreply@blogger.comBlogger457125tag:blogger.com,1999:blog-1032680752522787900.post-80187140993927567612017-02-24T16:03:00.002-08:002017-02-24T16:03:17.883-08:00OH CANADA - CALL TO ACTION!<div dir="ltr" style="text-align: left;" trbidi="on">
<span style="font-family: "verdana" , sans-serif;">{Oh Canada! True North strong and free}</span><br />
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<span style="font-family: "verdana" , sans-serif;">Did you know children, age 5-14, are at greatest risk of contracting Lyme disease - a serious infection contracted from a tick bite?</span><br />
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<span style="font-family: "verdana" , sans-serif;">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?</span><br />
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<span style="font-family: "verdana" , sans-serif;">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?</span><br />
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<span style="font-family: "verdana" , sans-serif;">Did you know that Lyme can become a debilitating chronic illness if it is not diagnosed promptly and treated adequately?</span><br />
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<span style="font-family: "verdana" , sans-serif;">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.</span><br />
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<span style="font-family: "verdana" , sans-serif;">As a result, in 2014,<a href="https://openparliament.ca/bills/41-2/C-442/" target="_blank"> BILL C-442</a> 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.</span><br />
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<span style="font-family: "verdana" , sans-serif;">A <a href="https://www.canada.ca/en/public-health/programs/consultation-draft-federal-framework-lyme-disease/draft-federal-framework.html" target="_blank">draft of that framework (click here to read)</a> 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.</span><br />
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<span style="font-family: "verdana" , sans-serif;"><b><i>Anyone, anywhere can contract Lyme...The health of our nation; our families & Canada's future, our children, are at risk.</i></b></span><br />
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<span style="font-family: "verdana" , sans-serif;"><b><u>We need you to sign this petition before March 1, 2017 to demand this draft Framework be rejected in its current form.</u></b> 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.</span><br />
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<a href="https://www.change.org/p/minister-philpott-ticking-lyme-bomb-in-canada-fix-canada-s-lyme-action-plan-now">https://www.change.org/p/minister-philpott-ticking-lyme-bomb-in-canada-fix-canada-s-lyme-action-plan-now</a><br />
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<span style="font-family: "verdana" , sans-serif;">Sign the petition & join the more than 30,000 Canadians who have already signed. Please feel free to share this post!</span><br />
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<span style="font-family: "verdana" , sans-serif;"><b><i>{Ensuring a bright future for all our children is the responsibility of the community, schools, families & like it or not, politicians as well.}</i></b></span><br />
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<span style="font-family: "verdana" , sans-serif;"><b><i>****</i></b></span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgTVQBqpZPEV5CYd-sAZkBZHMqKE5d1WfLihWOD7IjSPoBpto1r-C1G-_M0fnEPHND8DC6XBcOQJaWYm0FItTDBMrQ-kvQtIVg7m5w1cPM-pkBMD7nnqJehYt1US0ZcNz4ROy6d4sSgGp9Z/s1600/R_T_Lyme_ticks_WEB___Content_Content.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="290" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgTVQBqpZPEV5CYd-sAZkBZHMqKE5d1WfLihWOD7IjSPoBpto1r-C1G-_M0fnEPHND8DC6XBcOQJaWYm0FItTDBMrQ-kvQtIVg7m5w1cPM-pkBMD7nnqJehYt1US0ZcNz4ROy6d4sSgGp9Z/s400/R_T_Lyme_ticks_WEB___Content_Content.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><a href="http://www.yorkregion.com/news-story/7146884-lyme-disease-sufferers-devastated-by-federal-government-s-action-plan/" target="_blank">Click here to read: Lyme disease sufferers devastated by federal government's action plan</a></td></tr>
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<span style="font-family: Trebuchet MS, sans-serif;"><b><i>A message from the Canadian Lyme Disease Association <a href="https://canlyme.com/" target="_blank">(Canlyme.com)</a>:</i></b></span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">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.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">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.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;"><u style="font-style: italic; font-weight: bold;">The report in no way meets the mandate of the legislation.</u><i style="font-weight: bold;"> </i>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.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">Please read the wording of the framework carefully, specifically Sec 3.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">” … for the purpose of developing a comprehensive federal framework that includes</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">(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;</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">(b) the establishment of guidelines regarding the prevention, identification, treatment and management of Lyme disease, and the sharing of best practices throughout Canada; and</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">(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. </span></div>
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<b><i><span style="font-family: Trebuchet MS, sans-serif;">The draft report that PHAC has written HAS MET NONE OF THE REQUIREMENTS LAID OUT IN SEC. 3 and it certainly was not consultative. .</span></i></b></div>
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s.http://www.blogger.com/profile/02214787682053856588noreply@blogger.com0tag:blogger.com,1999:blog-1032680752522787900.post-81450077145853482132017-02-15T16:22:00.001-08:002017-02-15T16:22:44.455-08:00WHEN IS ENOUGH, ENOUGH?<div dir="ltr" style="text-align: left;" trbidi="on">
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjIfGCzXvYjEmriwFJV4DnorowrArcL5LPLgpY9gW6mym0OXTSd8o7KPBdiBn_I9Kg8Bbl5CEY45V0xDbOZCX03TvUZdm3EgF4u-qjmNRQFmMXBNNL8i05yefeOCZgPZ62KZbxHN7KaxK-9/s1600/IMG_1349.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjIfGCzXvYjEmriwFJV4DnorowrArcL5LPLgpY9gW6mym0OXTSd8o7KPBdiBn_I9Kg8Bbl5CEY45V0xDbOZCX03TvUZdm3EgF4u-qjmNRQFmMXBNNL8i05yefeOCZgPZ62KZbxHN7KaxK-9/s400/IMG_1349.JPG" width="400" /></a></div>
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<b><i><span style="font-family: "verdana" , sans-serif;">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. </span><span style="font-family: "verdana" , sans-serif;">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. </span><span style="font-family: "verdana" , sans-serif;">~VE}</span></i></b></div>
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<span style="font-family: "verdana" , sans-serif;">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. </span><br />
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<span style="font-family: "verdana" , sans-serif;"><b><i>When is enough, enough?</i></b></span><br />
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<span style="font-family: "verdana" , sans-serif;">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. </span><br />
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<b><i><span style="font-family: "verdana" , sans-serif;">For among these winters there is one so endlessly winter that only by wintering through it will your heart survive. ~Rilke</span></i></b></div>
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<span style="font-family: "verdana" , sans-serif;">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.</span><br />
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<span style="font-family: "verdana" , sans-serif;">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.</span><br />
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<span style="font-family: "verdana" , sans-serif;"><b><i>When is enough, enough?</i></b></span><br />
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<span style="font-family: "verdana" , sans-serif;">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.</span><br />
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<span style="font-family: "verdana" , sans-serif;">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.</span><br />
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<span style="font-family: "verdana" , sans-serif;"><b><i>This is the battle. In its rawest form. </i></b></span></div>
s.http://www.blogger.com/profile/02214787682053856588noreply@blogger.com2tag:blogger.com,1999:blog-1032680752522787900.post-14177424380027917762016-07-16T10:52:00.002-07:002016-07-16T10:52:28.879-07:00THE LATEST LIFE STORM<div dir="ltr" style="text-align: left;" trbidi="on">
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<span style="font-family: "verdana" , sans-serif;">i recently hiked up cypress mountain. </span><br />
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<span style="font-family: "verdana" , sans-serif;">i got up at 6 AM (which, for many reasons, is a feat in and of itself), drove an hour, then hiked 3.5 hours in the pouring rain in 10 degree weather...but the view made it all worth it! </span><span style="font-family: verdana, sans-serif;">not.</span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg7bPQRlQlWk_Jv5uVCxUPVD6PkXbM8ID0Cvh8KSvqxVUlENVq3h1zIbpseUQs_wYUXhq53RpegUdM0vCHHIuOqmFipHd4rXrkUwsKPvPm-pHP_SpIUsytWcq1AlnaFKjNXDFPAtah1T3EX/s1600/IMG_4177.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg7bPQRlQlWk_Jv5uVCxUPVD6PkXbM8ID0Cvh8KSvqxVUlENVq3h1zIbpseUQs_wYUXhq53RpegUdM0vCHHIuOqmFipHd4rXrkUwsKPvPm-pHP_SpIUsytWcq1AlnaFKjNXDFPAtah1T3EX/s640/IMG_4177.JPG" width="512" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Vancouver is behind those clouds.</td></tr>
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<span style="font-family: "verdana" , sans-serif;">actually, what drove me up that mountain, what is driving many of my outdoor adventures, is a need to escape from a tough reality that has been a dark storm cloud hanging low and menacing on the horizon for the last several weeks.</span><br />
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<span style="font-family: "verdana" , sans-serif;">we found out in june that our house was being listed. again. we went through this two years ago. (read about that <a href="http://ticksandtrust.blogspot.ca/2014/09/letting-go-moving-on-is-hard-and-holy.html" target="_blank">here</a> and <a href="http://ticksandtrust.blogspot.ca/2014/12/buyer-beware.html" target="_blank">here</a>). obviously, it didn't sell back then... possibly because of the whole blue tarp of death - read about that in <a href="http://ticksandtrust.blogspot.ca/2014/12/buyer-beware.html" target="_blank">buyer beware</a> lol. the story of the blue tarp and the fact that i was wearing one on my hike is totally ironic. i didn't think of it til i started writing this post. funny.</span><br />
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<span style="font-family: "verdana" , sans-serif;"><br /></span><span style="font-family: "verdana" , sans-serif;">so the blue tarp of death bought us another 2 years in our home. my little dollar store blue tarp came in handy on my hike and provided a bit of shelter from the driving rain and wind of the day. but, alas, there are no more blue tarps to shield us against the driving elements of this latest howling storm -</span><br />
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<span style="font-family: "verdana" , sans-serif;"><b><i>our house has sold. we have to move. </i></b></span><br />
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<span style="font-family: "verdana" , sans-serif;">word came this week that the home we have called our own for the last 17 years has been sold. in our world, this is not welcome news. it's hard, disheartening, sad news.</span><br />
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<span style="font-family: "verdana" , sans-serif;">after all, 'our home' was never really ours to begin with. it was always owned by someone else. now a new someone owns it. they bought it AND they want to live in it. the nerve!</span><br />
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<span style="font-family: "verdana" , sans-serif;">so we will have to leave...by december 2016.</span><br />
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<span style="font-family: "verdana" , sans-serif;"><b><i>{She stood in the storm and when it did not blow her </i></b></span><b style="font-family: verdana, sans-serif;"><i>away,</i></b><br />
<b style="font-family: verdana, sans-serif;"><i> she adjusted her sails.}</i></b></div>
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<span style="font-family: "verdana" , sans-serif;"><b><i><br /></i></b></span></div>
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<span style="font-family: "verdana" , sans-serif;">i do not want to leave my home; the only home my youngest two have ever known. and i don't want to leave this city i love with all my heart. yet, the inclement conditions of the vancouver housing (rental) market and rental bidding wars may blow us clear across the country.</span><br />
<span style="font-family: "verdana" , sans-serif;"><i><b><br /></b></i></span>
<span style="font-family: "verdana" , sans-serif;"><i><b>i don't know if i can adjust my sails to that.</b></i></span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span>
<span style="font-family: "verdana" , sans-serif;">this latest life storm has got a mountain of emotion to traverse. the winds of it are a howling cold front cutting an icy jagged tear through my heart. i've got a tidal wave of feelings blitzing their way through my body and a torrential downpour of sadness cascading down my cheeks. the dense, dark cloud of it all sits low and thick obliterating my view... of where to go or how to move on from here.</span><br />
<br />
<span style="font-family: "verdana" , sans-serif;">they say home is where the heart is... but my heart is here. in the mountains i climb. in the forests i bike. in the ocean i kayak. and in east van with the kids we work with.</span><br />
<b><i><span style="font-family: "verdana" , sans-serif;"><br /></span>
<span style="font-family: "verdana" , sans-serif;">it's gonna take awhile to adjust my sails to this one.</span></i></b><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span>
<span style="font-family: "verdana" , sans-serif;">in fact, i've (we've) been grappling with this for several weeks already. and it's just been too hard to write about or speak of because that would mean i'd (we'd) have to really face the full brunt of this storm. this is hard on so many levels and </span><span style="font-family: "verdana" , sans-serif;">for many reasons. </span><span style="font-family: verdana, sans-serif;">however, we can no longer ignore or deny that a move is looming overhead and there appears to be nothing affordable on the horizon. </span><br />
<b><span style="font-family: "verdana" , sans-serif;"><br /></span>
<span style="font-family: "verdana" , sans-serif;">where to go? or more like where can we afford to live? well isn't that the 50 million dollar question.</span></b><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span>
<span style="font-family: "verdana" , sans-serif;">we've been looking for awhile now and there is nothing that compares to what we are currently in - both for size or price. pretty much anything 3 bedroom for us; even a shared living space (top floor or basement), would mean a complete redefinition of the word budget. And finding an extra grand per month is not something we can adjust the budget to. </span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span>
<span style="font-family: "verdana" , sans-serif;"><b><i>this is hard to share... but we're putting this out there in the hopes that you will share it or that you will know someone who knows someone who has a place we could settle in to.</i></b></span><br />
<u><span style="font-family: "verdana" , sans-serif;"><br /></span>
<span style="font-family: "verdana" , sans-serif;">HERE'S THE SPECIFICS:</span></u><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span>
<br />
<span style="font-family: verdana, sans-serif;"><b>we'd prefer to stay in current east richmond neighborhood</b> <i>(avery is starting grade 8 in sept)</i></span><div>
<span style="font-family: verdana, sans-serif;">or </span><br /><span style="font-family: verdana, sans-serif;"><b>make a move into east van</b> (<i>where graham works and where we have always hoped to live.)</i></span><i><br /></i><span style="font-family: verdana, sans-serif;"><br /></span><span style="font-family: verdana, sans-serif;"><b>a 3 bedroom house or townhouse with adequate storage;</b> </span><i><span style="font-family: verdana, sans-serif;">(<u>clean, bright, quiet, mold-free environment is needed</u> as both Parker and i have significant chronic health issues)</span></i><span style="font-family: verdana, sans-serif;"><br /></span><b><span style="font-family: "verdana" , sans-serif;">enclosed garage/storage area as we have </span><span style="font-family: "verdana" , sans-serif;">bikes</span></b><br /><span style="font-family: verdana, sans-serif;"><br /></span><span style="font-family: verdana, sans-serif;"><b>dog-friendly</b> as we have a small, non-shedding dog. (harrison is almost human but you know, not everyone sees it that way, so we have to classify him as a dog.)</span><br /><br /><span style="font-family: verdana, sans-serif;"><b>move-out date on or before december 1,2016</b>. (<i>we do not want to move at christmas time)</i></span></div>
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<span style="font-family: verdana, sans-serif;"><i><br /></i></span></div>
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<span style="font-family: verdana, sans-serif;"><i><b>our current rent is $1640.</b> there is not much room in the budget to pay a whole lot more than that. </i></span></div>
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<span style="font-family: verdana, sans-serif;"><i><br /></i></span></div>
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<span style="font-family: verdana, sans-serif;"><i><br /></i></span><br />
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s.http://www.blogger.com/profile/02214787682053856588noreply@blogger.com3tag:blogger.com,1999:blog-1032680752522787900.post-87145105560518350392016-05-20T13:44:00.000-07:002016-05-21T15:26:41.384-07:00THE NATURE OF THE BEAST<div dir="ltr" style="text-align: left;" trbidi="on">
<br />
<span style="font-family: "verdana" , sans-serif;">so i've recently had a relapse of bartonella (<i>co-infection of lyme</i>). </span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span>
<span style="font-family: "verdana" , sans-serif;">i started antibiotic treatment (<i>septra ds</i>) for it on april 30. on may 2, i had a bit of a herx (<i>a die off of the bacteria which temporarily increases symptoms</i>) but for the most part it was very manageable (rare) and it didn't slow me down too much. </span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span>
<span style="font-family: "verdana" , sans-serif;">i've even been feeling a bit grateful for this relapse because the anxiety i've been living with since getting strep in spring 2014 has been virtually non-existent since starting septra and experiencing the herx on may 2. POW! how fabulous is that? that's been an unexpected and superb side effect i will happily take. (<i>and it could possibly mean that this lingering anxiety that we thought was residual damage from strep is possibly related to an active bartonella infection.</i>)</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span>
<span style="font-family: "verdana" , sans-serif;">so all in all, i've actually been managing this relapse ok...until this week that is. </span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span>
<span style="font-family: "verdana" , sans-serif;">monday i had an awesome time ripping trails with my eldest, taylor and his dog lily. i was just so happy and grateful to be out there doing that. i never ever take for granted the ability to be able. </span><br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiVvptzPTkkULqQBeQ9j3wMg-IJ6WfG8UiYblHFHrtia3kt0jI4Z-eLH1crvHgEBilhLQrZ23xNIHqsODwNTHXLOFe11A_te9I0MrDPxb0u0FObx56zEMdqm6-fKVPA9LiyS_mGo2WTft3c/s1600/IMG_1539.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiVvptzPTkkULqQBeQ9j3wMg-IJ6WfG8UiYblHFHrtia3kt0jI4Z-eLH1crvHgEBilhLQrZ23xNIHqsODwNTHXLOFe11A_te9I0MrDPxb0u0FObx56zEMdqm6-fKVPA9LiyS_mGo2WTft3c/s400/IMG_1539.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Delta Watershed, May 16, 2016</td></tr>
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<span style="font-family: "verdana" , sans-serif;"></span><br />
<span style="font-family: "verdana" , sans-serif;"></span>
<span style="font-family: "verdana" , sans-serif;">tuesday we had friends for dinner. i was really tired when i went to bed that night but you know, i had to actually, horror of horrors, cook that day and that is always exhausting to me. i woke up on wednesday morning to an explosion of treatment side effects and a pretty intense flare in symptoms - burning nerve pain in my feet, fatigue, brain fog and stiff and inflamed joints. by the evening, the twitching and tremoring had set in.</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span>
<span style="font-family: "verdana" , sans-serif;">i wasn't entirely sure if it was a herx, side effects or a bad flare but what i did know for sure was that i'm in for a bad spell.</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span>
<span style="font-family: "verdana" , sans-serif;"><b><i>sigh.</i></b></span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span><span style="font-family: "verdana" , sans-serif;">in a flood of tears, plans for the day and weekend were cancelled, phone calls and emails were placed to my doctors, and a treatment plan set in motion. then i dragged my aching, quaking body off to bed. </span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span>
<b><i>
<span style="font-family: "verdana" , sans-serif;">i've been in bed ever since.</span></i></b><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span>
<span style="font-family: "verdana" , sans-serif;">once again life comes to a sudden and abrupt halt. rather than heading out on my bike for the many adventures we had planned for this long weekend, i'm riding out a plethora of debilitating physical and neurological symptoms in bed.</span><br />
<br />
<span style="font-family: "verdana" , sans-serif;">not at all how i envisioned this weekend going.</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span>
<span style="font-family: "verdana" , sans-serif;">this is hard. the hilly terrain of chronic lyme with its unpredictable crashes, cycling symptoms and ever-changing landscape is hard to ride out.</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span>
<span style="font-family: "verdana" , sans-serif;"><b><i>but this is the nature of the beast.</i></b></span><br />
<span style="font-family: "verdana" , sans-serif;"><b><i><br /></i></b></span>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiUiFGT_SArsvtYCzva08dU6AQdPAfYBCTucYOrKqrR4ckU0AXiRfYl24kKV-2w15BKUeBHWQ0HtdD3DyLPxiEMvFPTQJkJmMDY8bsQkKlZh_p6Ed4Lhe-v6810nt7Okcp2VFjUOFQQH-1B/s1600/FullSizeRender+%252842%2529.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiUiFGT_SArsvtYCzva08dU6AQdPAfYBCTucYOrKqrR4ckU0AXiRfYl24kKV-2w15BKUeBHWQ0HtdD3DyLPxiEMvFPTQJkJmMDY8bsQkKlZh_p6Ed4Lhe-v6810nt7Okcp2VFjUOFQQH-1B/s400/FullSizeRender+%252842%2529.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Squamish - May 14, 2016</td></tr>
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<div style="text-align: center;">
<span style="font-family: "trebuchet ms" , sans-serif;"><i><b>"If you are feeling frightened about what comes next, don't be. </b></i></span></div>
<div style="text-align: center;">
<span style="font-family: "trebuchet ms" , sans-serif;"><i><b>Embrace the uncertainty. Allow it to lead you places. </b><b>Be brave as it challenges you to exercise both your heart and mind as you create your own path toward happiness. </b><b>Spin wildly into your next action. Enjoy the present, each moment as it comes because you will never get another one quite like it."</b><span style="font-size: xx-small; text-align: center;"> </span></i></span><span style="font-family: "verdana" , sans-serif; font-size: xx-small; text-align: center;"> ~ Everwood</span></div>
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<span style="font-family: "verdana" , sans-serif; font-size: xx-small; text-align: center;"><br /></span></div>
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<span style="font-family: "verdana" , sans-serif;">i'm trying to stay positive. after all, this could be over as quickly as it started. on the other hand, some times a flare marks the start of a long, slow, painful uphill grind that takes months to recover from.</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span>
<span style="font-family: "verdana" , sans-serif;">at any rate, i'm trying to use the down time constructively and wisely... to watch grey's anatomy. ha ha. to blog. to create. to process. to organize the photos on my laptop. oh snap! that could take years. to remember to have compassion for my body. to remember that i am strong and i will come back from this. </span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span>
<span style="font-family: "verdana" , sans-serif;">the return of my neurological symptoms reminded me of the recording we made during one of my tremor episodes back in october 2013. during my laptop tidy up and in between episodes of greys, i found it. seeing as it is lyme disease awareness month, flashback friday on IG, and i'm once again living with similar symptoms (albeit not as bad), i've decided to post it. </span><span style="font-family: "verdana" , sans-serif;">(<i>pardon the editing - i'm no editor plus i had to slice and dice it to get it to fit within IG's 60 second video limitations</i>)</span><br />
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<iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dwDAOEDebdJvhe3ZpqJ2JHs34pxTyrvY2KZNyTYUJFLDJdupn3FovZOQXu-k_piJtk8XEDYhDVCruOML1OpZg' class='b-hbp-video b-uploaded' frameborder='0'></iframe></div>
<span style="font-family: "verdana" , sans-serif;"><br /></span>
<span style="font-family: "verdana" , sans-serif;"><b><i>i hope it will help shed light on this beast's confounding nature.</i></b></span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span>
<span style="font-family: "verdana" , sans-serif;">from the debilitating yet subtle nuances of it; the fatigue, pain and brain fog that are not visible to the casual observer to the more obvious symptoms such as twitching, paralysis and memory loss.</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span>
<span style="font-family: "verdana" , sans-serif;">the bacteria itself is a beast that morphs and changes and is able to silently and suddenly attack your organs and central nervous system in the blink of an eye. you really can be fine and living life one minute and the next you can't get out of bed or think straight.</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span>
<span style="font-family: "verdana" , sans-serif;">aside from the twitching, i don't look sick in the video. i'd bet most people would say i even look healthy. this is not unique to me. most people with lyme (or other chronic illnesses) don't 'look' sick - at least not if you are on the outside looking in. </span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span>
<span style="font-family: "verdana" , sans-serif;"><b><i>the abrupt shifts in ability and our healthy appearances can impact the way others perceive us and cause them to question the severity of the illness we live with.</i></b></span><br />
<br />
<span style="font-family: "verdana" , sans-serif;">compounding the confusion is that most of us work really hard to disguise or mask symptoms when we are out in public. which, i guess in some ways, defeats the purpose of trying to seek understanding but most of the time it's just easier to try to appear 'normal' rather than try to explain this inexplicable beast to those who don't have it.</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span>
<span style="font-family: "verdana" , sans-serif;">and, sometimes, we hide it because when we have been open or vulnerable about the true nature of this beast, we have been shamed, ridiculed or accused of attention-seeking or over-exaggerating.</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span>
<span style="font-family: "verdana" , sans-serif;">i hope this video can shed some light on that. i think we all live with some hidden pain or hurt that impacts us in ways no one else can see. i like to think that if we believe this to be true, then it's not such a far stretch to believe that someone can be seriously sick and yet look fine.</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span>
<span style="font-family: "verdana" , sans-serif;"><b><i>be kind. you never know what kind of battle someone is fighting behind closed doors.</i></b></span><br />
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s.http://www.blogger.com/profile/02214787682053856588noreply@blogger.com0tag:blogger.com,1999:blog-1032680752522787900.post-72740957118124021992016-05-16T17:16:00.000-07:002016-05-19T20:05:00.987-07:00FROM WHERE I SIT<div dir="ltr" style="text-align: left;" trbidi="on">
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<span style="font-family: "verdana" , sans-serif;">i had an appointment with my therapist a few days ago. i was supposed to start neurofeedback to help treat the baseline anxiety disorder i've acquired as a result of strep and lyme. </span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span>
<span style="font-family: "verdana" , sans-serif;">as i was driving to my therapist's office (which is a 45 minute drive from my home) i was hit with a wave of anger and sorrow so deep and so wide that by the time i arrived in her office i was so ticked off i was nearly levitating. needless to say, neurofeedback was postponed and the entire 90 minute session ended up being devoted to working through my feelings. a lot of f-bombs were spewed and tears shed. </span><br />
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<span style="font-family: "verdana" , sans-serif;"><br /></span>
<span style="font-family: "verdana" , sans-serif;">there were several triggers...mainly to do with lyme disease and the diabolical darkness and utter insanity that surrounds it. from the politics; to the general public's apathy; to the medical ignorance; or the blatant denial of it; to the relentless, endless suffering it unleashes on our family and other families. (<i>i've also recently suffered a bartonella relapse which adds fuel to the fire.</i>) </span><span style="font-family: "verdana" , sans-serif;"> </span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span>
<span style="font-family: "verdana" , sans-serif;">generally i'm pretty measured in what i say in regards to the anger i feel towards the mainstream medical establishments incomprehensible arrogance and absurd denial of lyme disease.</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span>
<span style="font-family: "verdana" , sans-serif;">my anger is very justified but i don't want to be consumed by it. i don't want to come out of this battle bitter. vengeful. hateful. i don't want to propagate that in others either. so i blew off steam in my therapists office. that helped. i've simmered down considerably but as i've been sitting here reflecting and processing, words tumbled from my heart into my fingertips and onto my screen. </span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span>
<span style="font-family: "verdana" , sans-serif;"><b>from where i sit...</b></span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span>
<span style="font-family: "verdana" , sans-serif;">currently, there is a lyme conference going on in ottawa (may 15-17) </span><span style="font-family: "verdana" , sans-serif;">i should be there. but i can't be. i can't even watch it online. maybe that is very un-advocatey (is that even a word?) of me. that is the reality. we live the HORROR of this disease every damn day of our lives. sparky has lost 7 YEARS of his childhood to this disease. i've lost 10 years. taylor missed out on his grad and the last several years of his teens. it has ripped our lives to shreds and our story is but one of many. i have huge respect for all those standing in the gap and fighting for change in ottawa.</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjnk6FZnyrx5POSSWPKiYhv6Rt7vwbYLGW6MVVj2hDSq3BJILnjzLV_wWcx0M3C949eH3edd0Xr62LpT9e_HMa7XZWwh27ie3lG5mJhtTd1L9qRUuz3hJX971hkwIrm39SLRm0A8iTmoThA/s1600/FullSizeRender+%252836%2529.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjnk6FZnyrx5POSSWPKiYhv6Rt7vwbYLGW6MVVj2hDSq3BJILnjzLV_wWcx0M3C949eH3edd0Xr62LpT9e_HMa7XZWwh27ie3lG5mJhtTd1L9qRUuz3hJX971hkwIrm39SLRm0A8iTmoThA/s400/FullSizeRender+%252836%2529.jpg" width="320" /></a></div>
<span style="font-family: "verdana" , sans-serif;"><br /></span>
<span style="font-family: "verdana" , sans-serif;"><b>dear friends and family;</b></span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span>
<span style="font-family: "verdana" , sans-serif;">please hear me on this. those folks who have gone to ottawa are advocating for you. they are wearing their hearts on their sleeves and sharing their heart wrenching stories of misdiagnosis and mistreatment of lyme disease to the federal government, politicians and convening medical professionals for ALL canadians. you guys! they are doing this on your behalf because if the current guidelines and diagnostic testing of lyme does not change their stories could become your stories.</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span>
<span style="font-family: "verdana" , sans-serif;">in fact, that IS happening. every day in doctor's offices across canada, lyme disease is being blatantly dismissed and arrogantly denied. friends, i am currently walking a family thru the confounding process of having to pay for medical care in our 'free' public system because BC doctors are still misinformed and refusing to treat lyme. they had the tick. the child had the bull's eye rash (which is clinical slam dunk as far as diagnosis goes) and their doctor still brushed them off and said it was nothing to worry about. <i>ARE YOU FREAKING KIDDING ME? </i>my gosh, canada, stop the apathy and denial...families are losing their lives over a treatable and curable tick bite because of archaic medical dogma.</span><br />
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<span style="font-family: "verdana" , sans-serif;">lastly, to my dear friends living with lyme - keep telling your stories and standing up for justice. even though, at times, you may feel like a broken record, be accused of being hysterical or overstating risks, or that the fight feels futile and that no one is listening. YOUR STORY MATTERS. your life matters. your suffering matters. your voice matters. </span><br />
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<span style="font-family: "verdana" , sans-serif;">you are making a difference.</span><br />
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<span style="font-family: verdana, sans-serif;">thank you from the bottom of my heart.</span><br />
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<span style="font-family: "verdana" , sans-serif;">love s.</span><br />
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s.http://www.blogger.com/profile/02214787682053856588noreply@blogger.com0tag:blogger.com,1999:blog-1032680752522787900.post-29190796559165890032016-05-14T09:37:00.000-07:002016-05-18T09:51:06.636-07:00TRAIL DOG (LDC 2016)<div dir="ltr" style="text-align: left;" trbidi="on">
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<span style="font-family: "verdana" , sans-serif;">so i'm not the only one that has caught the mountain biking bug...harrison is taking trail dog to a whole new level. please heed his warning so that biking is the only bug you catch! </span><br />
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<span style="font-family: "verdana" , sans-serif;">this warning comes on the tail of learning a teenager recently contracted lyme on a family bike ride on a <b><i>trail in our city</i></b>, that's right NOT in the woods or the forest but on a suburban city trail that runs through the city of Richmond, BC. </span><br />
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<span style="font-family: "verdana" , sans-serif;">lyme is on the rise in canada and around the world... anyone, anywhere is at risk. please learn about lyme! Read the facts on Lyme Disease at <a href="http://canlyme.com/">Canlyme.com</a> and <a href="http://lymediseasechallenge.org/">Lymediseasechallenge.org</a> </span><br />
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<span style="font-family: "verdana" , sans-serif;"><b><i>And please help spread the word by doing the Lyme Disease Challenge</i></b> - take a bite out of lyme before a tick takes a bite out of you!</span><br />
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<span style="font-family: "verdana" , sans-serif;"><b>Biking is rad; Ticks are bad.</b></span></div>
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<span style="font-family: "verdana" , sans-serif;"><b>One bite from a tick could make you really sick.</b></span></div>
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<span style="font-family: "verdana" , sans-serif;"><b>Lyme Disease is a global epidemic;</b></span></div>
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<span style="font-family: "verdana" , sans-serif;"><b>Furry or not, all are at risk!</b></span></div>
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<span style="font-family: "verdana" , sans-serif;"><b>Guard against tick bites;</b></span></div>
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<span style="font-family: "verdana" , sans-serif;"><b>Wear deet at your feet &</b></span></div>
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<span style="font-family: "verdana" , sans-serif;"><b>put permethrin on your gear.</b></span></div>
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<span style="font-family: "verdana" , sans-serif;"><b>Get advice from your vet;</b></span></div>
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<span style="font-family: "verdana" , sans-serif;"><b>on how best to protect your pet.</b></span></div>
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<span style="font-family: "verdana" , sans-serif;"><b>Then ride without fear;</b></span></div>
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<span style="font-family: "verdana" , sans-serif;"><b>shred without dread.</b></span></div>
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<span style="font-family: "verdana" , sans-serif;"><b>Choose flowy or tech;</b></span></div>
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<span style="font-family: "verdana" , sans-serif;"><b>Or take on the north shore gnar if you dare.</b></span></div>
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<span style="font-family: "verdana" , sans-serif;"><b>Roam over loam; Rip with pride.</b></span></div>
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<span style="font-family: "verdana" , sans-serif;"><b>Whoop, holler, and get big air!</b></span></div>
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<span style="font-family: "verdana" , sans-serif;"><b>But most important of all,</b></span></div>
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<span style="font-family: "verdana" , sans-serif;"><b><i>Do a tick check after every ride!</i></b></span></div>
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<span style="font-family: "verdana" , sans-serif;"><br /></span><span style="font-family: "verdana" , sans-serif;">On Instagram, Harrison, Lyme Pooch, challenged these mountain biking badasses: </span><br />
<span style="font-family: "verdana" , sans-serif;">Steve Wong, Yoann Barelli, Brett Tippie, Daniel Corso and Different Bikes West Van to take a bite out of Lyme! Let's hope they do and that they h</span><span style="font-family: verdana, sans-serif;">elp spread awareness one rider at a time.</span><br />
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<span style="font-family: "verdana" , sans-serif;"><b>TAKE THE CHALLENGE: </b></span><span style="font-family: verdana, sans-serif;"><i>It's as easy as 1,2,3...</i></span></blockquote>
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<span style="font-family: "verdana" , sans-serif;"><br /></span><span style="font-family: "verdana" , sans-serif;"><b>1. TAKE A BITE:</b> Take a video or photo of you biting a lime</span><span style="font-family: "verdana" , sans-serif;"><br /></span><span style="font-family: "verdana" , sans-serif;"><b>2. SHARE A FACT: </b>Spread awareness by sharing one fact about Lyme Disease</span><span style="font-family: "verdana" , sans-serif;"><br /></span><span style="font-family: "verdana" , sans-serif;"><b>3. PASS IT ON:</b> Post online & Challenge 3 other people to take a bite</span><span style="font-family: "verdana" , sans-serif;">out of Lyme! Use hashtags #lymediseasechallenge #lymepooch </span><span style="font-family: "verdana" , sans-serif;"><br /></span><span style="font-family: "verdana" , sans-serif;"></span></blockquote>
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<span style="font-family: "verdana" , sans-serif;"><i><b>To wussy to do the challenge?</b></i> Then please consider making a tax deductible donation to <a href="http://ilads.org/">ILADS.org</a></span></blockquote>
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<span style="font-family: "verdana" , sans-serif;">More info & facts on lyme: <a href="http://lymediseasechallenge.org/">lymediseasechallenge.org</a></span><br />
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<span style="font-family: "verdana" , sans-serif;">You can follow Harrison on </span><br />
<span style="font-family: "verdana" , sans-serif;">IG: Harrison P. Goertzen @Worldaccordingtoharrison</span><br />
<span style="font-family: "verdana" , sans-serif;">FB: World According to Harrison</span><br />
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s.http://www.blogger.com/profile/02214787682053856588noreply@blogger.com0tag:blogger.com,1999:blog-1032680752522787900.post-68022140902351734792016-05-11T17:48:00.003-07:002016-05-11T17:52:33.105-07:00HEALING IRON MAN<div dir="ltr" style="text-align: left;" trbidi="on">
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><b><i>{comedy is a necessity to get through life with the fewest scars. </i></b></span></div>
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><b><i>humor is the best antidote to help relieve struggles.}</i></b></span></div>
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<span style="font-size: xx-small;"> ~Suzy Kassem</span></div>
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<span style="font-family: "verdana" , sans-serif;">the boy has started physio to rehab his broken collarbone from his mountain bike crash. His therapist sent him home with a list of daily exercises....naturally the Hubster had to add in his own two cents. </span><br />
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<span style="font-family: "verdana" , sans-serif;"><br /></span><span style="font-family: "verdana" , sans-serif;"><b><i>where would we be without the hubster's humor, eh?</i></b></span><br />
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<span style="font-family: "verdana" , sans-serif;">sparky's incision & collarbone are healing well and range of motion in </span><span style="font-family: "verdana" , sans-serif;">his arm/shoulder is back to nearly 100%. we are amazed at how quickly </span><span style="font-family: "verdana" , sans-serif;">his body is recovering from this injury. it has actually been very odd to experience </span><span style="font-family: "verdana" , sans-serif;">such a rapid and uncomplicated recovery process.</span><br />
<b><i><span style="font-family: "verdana" , sans-serif;"><br /></span>
</i></b><span style="font-family: "verdana" , sans-serif;"><b><i>this is not in our realm of normal.</i></b> </span><br />
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<span style="font-family: "verdana" , sans-serif;">healing from (chronic) Lyme is so vastly different. fighting chronic </span><span style="font-family: "verdana" , sans-serif;">Lyme is complex, frustrating and never follows a predictable pattern. i</span><span style="font-family: "verdana" , sans-serif;">t is an arduous marathon of <i>"one step forward, two steps back"</i>... it takes an iron will, body and mind to battle this disease.</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span><span style="font-family: "verdana" , sans-serif;">it is a journey that sparky has been battling his way through for nearly 7 YEARS now. </span><span style="font-family: "verdana" , sans-serif;">we are grateful that he has been doing better since the end of february (2016). he has "good" days and "bad" days - most days are still a grinding uphill slog. h</span><span style="font-family: "verdana" , sans-serif;">is current treatment protocol has helped reduce his joint pain and as </span><span style="font-family: "verdana" , sans-serif;">a result he is sleeping better. he has also gained back 10 of the </span><span style="font-family: "verdana" , sans-serif;">20lbs he lost this past fall. less pain, more sleep & weight gain mean </span><span style="font-family: "verdana" , sans-serif;">that he is stronger & able to get out for small amounts of time and/or </span><span style="font-family: "verdana" , sans-serif;">attend school for a few hours per week. we do not take these gains </span><span style="font-family: "verdana" , sans-serif;">lightly - they are significant and we are relieved that he is no longer deteriorating. however, </span><span style="font-family: "verdana" , sans-serif;">he continues to spend a good deal of time in bed due to </span><span style="font-family: "verdana" , sans-serif;">profound fatigue, brain fog, headaches and noise sensitivity. some </span><span style="font-family: "verdana" , sans-serif;">days these symptoms are very intense & disabling.</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span><span style="font-family: "verdana" , sans-serif;">his medical team is still working to uncover what set off his relapse and rapid decline this past year. and find a treatment protocol that will help his remaining symptoms. his mountain biking </span><span style="font-family: "verdana" , sans-serif;">crash temporarily side-lined further investigation as well as delayed treatment. </span><span style="font-family: "verdana" , sans-serif;">IRONically, he had been undergoing heavy metal detox protocol at the time of his accident. so there we were trying to move metals out and there he went getting metals put in. funny. not funny.</span><br />
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<span style="font-family: "verdana" , sans-serif;">heavy metal detox can be hard on the body so this treatment was tabled while he recovered from his surgery. now that his body is healing from that we are finally able </span><span style="font-family: "verdana" , sans-serif;">to move forward with more aggressive treatment.</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span><span style="font-family: "verdana" , sans-serif;">on thursday we will be travelling to Seattle, Washington. he is </span><span style="font-family: "verdana" , sans-serif;">scheduled to have a two hour appointment with one of his Lyme docs as </span><span style="font-family: "verdana" , sans-serif;">well as undergo additional testing and treatments in the clinic there. the following week we have an appointment with DR H (this is phone appointment. we are not going to SF at this time). </span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span><span style="font-family: "verdana" , sans-serif;">we are hopeful that as a result of these appointments, he will have a treatment plan that will address his </span><span style="font-family: "verdana" , sans-serif;">infections, his mitochondrial deficits, and heavy metal </span><span style="font-family: "verdana" , sans-serif;">toxicity & other underlying co-morbid issues that are continuing to </span><span style="font-family: "verdana" , sans-serif;">cause him such disabling symptoms. we know this is going to be a tough course and we have to target each thing one step at a time in order to heal our iron man.</span><br />
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<span style="font-family: "verdana" , sans-serif;">ok i feel like i should some how close this post with something funny or lighthearted. especially since i started it with humor. but i'm just sitting here like, <i>"ummm, hmmmmm... nope, nada. i got nothing more to add."</i> </span><br />
<span style="font-family: "verdana" , sans-serif;"><b><i><br /></i></b></span>
<span style="font-family: "verdana" , sans-serif;"><span style="font-style: italic; font-weight: bold;">my heart is heavy as lead. </span></span><br />
<span style="font-family: "verdana" , sans-serif;"><span style="font-style: italic; font-weight: bold;"><br /></span></span>
<span style="font-family: "verdana" , sans-serif;">here's the thing. some days we can laugh and find the humor in all of this. other days we cannot. some days we find ourselves laughing and crying. today is that sort of day. this is hard. we are so worried about our boy - his present and his future. we so desperately hope and pray for healing for our iron man. </span><br />
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<span style="font-family: "verdana" , sans-serif;">but, ok. here we go. as we road trip tomorrow, we'll be listening to the comedian jim gaffigan. he's worth a laugh or two or three. check out his <a href="http://www.jimgaffigan.com/product/mr-universe" target="_blank">McDonalds rant</a> here or search him out on youtube. </span><br />
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s.http://www.blogger.com/profile/02214787682053856588noreply@blogger.com1tag:blogger.com,1999:blog-1032680752522787900.post-26591519720074621052016-05-07T12:23:00.000-07:002016-05-10T12:23:40.739-07:00LYME POOCH RETURNS<div dir="ltr" style="text-align: left;" trbidi="on">
<span style="font-family: Verdana, sans-serif;"><b><i>may is lyme disease awareness month</i></b> </span><br />
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<span style="font-family: Verdana, sans-serif;">and oh me! oh my! - the first week of it has flown by! </span><br />
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<span style="font-family: Verdana, sans-serif;">i've been buried under a mountain of recycled clothing whilst the dog feverishly sewed himself a new wardrobe... all in anticipation of spreading lyme awareness and participating in the lyme disease challenge.</span><br />
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<tr><td class="tr-caption" style="text-align: center;">Sew Serious!</td></tr>
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<span style="font-family: Verdana, sans-serif;"><b><i>have you heard of the lyme disease challenge?</i></b> it is a grass roots awareness event that launched last year. it is back this year and will be running for the entire month of may! (<i>for more info visit: <a href="http://lymediseasechallenge.org/">lymediseasechallenge.org</a> - there are also details about participating in the challenge at bottom of this post</i>)</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">it was a smashing success last year! harrison participated in it and that is how he earned the nickname, <a href="http://ticksandtrust.blogspot.ca/p/blog-page.html" target="_blank">'lyme pooch'</a>. he felt like his little posts helped to make a difference and he hopes that each of you reading this will do your part too.</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjjkYmqwMRj5tY5VXoPgZOgosk0DhVPs1Ay0xl-ZgatgLjh5-qriGxJvKmvLHxCzAd56ko9rrl2Pxzw5meeztkFIa_Zzuln_WQ4_Fzb26Q8pth2jdp8h0r24eoj0nDNtN8yQn4oaiO8ZHTd/s1600/FullSizeRender+%252816%2529.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjjkYmqwMRj5tY5VXoPgZOgosk0DhVPs1Ay0xl-ZgatgLjh5-qriGxJvKmvLHxCzAd56ko9rrl2Pxzw5meeztkFIa_Zzuln_WQ4_Fzb26Q8pth2jdp8h0r24eoj0nDNtN8yQn4oaiO8ZHTd/s400/FullSizeRender+%252816%2529.jpg" width="395" /></a></div>
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<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">so that's right! the lyme pooch is back. and he's got lyme awareness ideas galore and brand new attire to wear! (<i>believe it or not, he makes his clothes by altering and tailoring thrifted menswear shirts and/or from raiding master's closet.</i>)</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhrZkLBdnp8hi823SDTeMF6c3HBKulrsBLYzQX26kRARxWuRCHYxREUoHi0EWTrJO2UmbnJmaPmwrakjTr0d0UDFuLec_fyCAy-X1Nx2fx6sOlaE3JVhtzoT9RwRu7hkh3j9IZw2mCJvNhY/s1600/FullSizeRender+%252833%2529.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="272" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhrZkLBdnp8hi823SDTeMF6c3HBKulrsBLYzQX26kRARxWuRCHYxREUoHi0EWTrJO2UmbnJmaPmwrakjTr0d0UDFuLec_fyCAy-X1Nx2fx6sOlaE3JVhtzoT9RwRu7hkh3j9IZw2mCJvNhY/s400/FullSizeRender+%252833%2529.jpg" width="400" /></a></div>
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<span style="font-family: Verdana, sans-serif;">i've been very busy photographing all his fur-brained ideas for this year's </span><br />
<span style="font-family: Verdana, sans-serif;">campaign. this past week, he's been re-posting pics from last year but soon the brand new ones will be ready to share! one evening as i was working like mad to edit one of his photo shoots, i caught him taking selfies in his brand new attire.</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhGFzWmypUaY0I4R_Di_9mwF-Xjfz2yewBeZyESEbDnMUdSberSQELrxX4ExDN8Y7Ax6VgJTOhh1jV8IB_kH4Igjk4CPcJ102Dme91NEcF2uEAC89JmoZNnDP1t16s5QluS1sGRK1MJo1bZ/s1600/IMG_6849.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhGFzWmypUaY0I4R_Di_9mwF-Xjfz2yewBeZyESEbDnMUdSberSQELrxX4ExDN8Y7Ax6VgJTOhh1jV8IB_kH4Igjk4CPcJ102Dme91NEcF2uEAC89JmoZNnDP1t16s5QluS1sGRK1MJo1bZ/s400/IMG_6849.JPG" width="400" /></a></div>
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<b style="font-family: Verdana, sans-serif;"><i>sheesh, there he was... just lounging around while i work myself to the bone!</i></b><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">you can follow harrison on his </span><br />
<span style="font-family: Verdana, sans-serif;">IG account - <a href="https://www.instagram.com/worldaccordingtoharrison/" target="_blank">Harrison P. Goertzen @Worldaccordingtoharrison</a></span><br />
<span style="font-family: Verdana, sans-serif;">FB page - <a href="https://www.facebook.com/World-According-to-Harrison-130826606975199/?fref=photo" target="_blank">World According to Harrison</a></span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">...and please make sure to follow the lyme disease challenge on <a href="https://www.facebook.com/LymeDiseaseChallenge/" target="_blank">Facebook</a> or <a href="https://www.instagram.com/lymediseasechallenge/" target="_blank">Instagram</a> too!</span><br />
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<span style="font-family: Verdana, sans-serif;">this year, harrison has already challenged a couple of ladies he has little crushes on and he is planning on challenging several interesting characters from the mountain bike community to take a bite out of lyme. he hopes they'll all rise to the occasion!</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjM98mIqgiFWa-FeH6e4TIZdWt3T7yuuVdzAVa0Y_OSEN_6eCwK_OlMJdzPGGgnfHnho71tCqq9HHIALi3I5A7o7GOmAugu4B7T7Q3lQzIFesvkK6SMGyziJlt-sVp0EqR4fvm4EESZF-MD/s1600/IMG_6557+%25281%2529.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjM98mIqgiFWa-FeH6e4TIZdWt3T7yuuVdzAVa0Y_OSEN_6eCwK_OlMJdzPGGgnfHnho71tCqq9HHIALi3I5A7o7GOmAugu4B7T7Q3lQzIFesvkK6SMGyziJlt-sVp0EqR4fvm4EESZF-MD/s400/IMG_6557+%25281%2529.JPG" width="400" /></a></div>
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<span style="font-family: Verdana, sans-serif;">additionally, he will be re-doubling his efforts to get <a href="http://www.ellentv.com/" target="_blank">ellen degeneres</a> to participate - he's still licking his wounds after his challenge to her last year went unanswered. </span><br />
<span style="font-family: Verdana, sans-serif;"><b><i><br /></i></b></span>
<span style="font-family: Verdana, sans-serif;"><b><i>but one can always hope!</i></b> </span><br />
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<span style="font-family: Verdana, sans-serif;">maybe this year she'll come through! sometimes persistence can pay off. after all, when harrison believes in something, he is like a dog with a bone... and this is <i>the one time that taking a bite out of something is a very worthy thing to do</i>! </span><br />
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<span style="font-family: Verdana, sans-serif;"><b><i>every bite counts! </i></b></span><br />
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<span style="font-family: Verdana, sans-serif;">you do not have to be 'nominated' in order to participate. please join harrison and help spread lyme disease awareness one bite at a time! take the lyme disease challenge today! it's as easy as 1, 2, 3..</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjSr4lGsPVQQmX6b_3v39o-SPTSu4qOULFO1y3gGTRU-8De6ir16AkogY6pOw5pLKFIiISkXE46ryQHe6v59UQ0qB8cftihcKKD3Y0dwT8nrI7GGHGo_5DT_M4nBdjNdVm9Qmxe-qbyu5vi/s1600/FullSizeRender+%252832%2529.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjSr4lGsPVQQmX6b_3v39o-SPTSu4qOULFO1y3gGTRU-8De6ir16AkogY6pOw5pLKFIiISkXE46ryQHe6v59UQ0qB8cftihcKKD3Y0dwT8nrI7GGHGo_5DT_M4nBdjNdVm9Qmxe-qbyu5vi/s400/FullSizeRender+%252832%2529.jpg" width="331" /></a></div>
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<span style="font-family: Verdana, sans-serif;">also, if you take the challenge as a result of harrison, please tag your post with the hashtag #lymepooch so that he can send you a a big lyme pooch smooch!</span><br />
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<span style="font-family: Verdana, sans-serif;">thank you in advance!</span><br />
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s.http://www.blogger.com/profile/02214787682053856588noreply@blogger.com0tag:blogger.com,1999:blog-1032680752522787900.post-29157913815699500882016-05-06T19:40:00.000-07:002016-05-06T19:48:35.935-07:00ACTUALLY, I CAN...<div dir="ltr" style="text-align: left;" trbidi="on">
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<span style="font-family: "verdana" , sans-serif;">i am excited to share this post today! i wrote this piece several weeks ago. i had seen on IG that liv cycling was holding a contest called "actually, i can". they were asking for women to share their story (& a pic) on what those words mean to them, how riding helps you train your mind and face fears. the contest began on april 8, 2016 and runs until september 30th, 2016. </span><span style="font-family: "verdana" , sans-serif;">a weekly winner is selected every friday until september. if you win on a friday, you are then eligible for the grand finale prize draw which is a liv bike of your choice!</span><br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjvSntSSa69knZQTmzzjhCbEO5BNldoSMxaEah6w8u7AA8_Q-y6lwIRcvuWdjTnm4fAixdhQisWUJbP9EWDRtT0KGbN7oWkyVOm4coVM2YAcSe_s8tz0Xi6-Ltkryg0JGQEUrpaYtSPHK3R/s1600/FullSizeRender+%252817%2529.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjvSntSSa69knZQTmzzjhCbEO5BNldoSMxaEah6w8u7AA8_Q-y6lwIRcvuWdjTnm4fAixdhQisWUJbP9EWDRtT0KGbN7oWkyVOm4coVM2YAcSe_s8tz0Xi6-Ltkryg0JGQEUrpaYtSPHK3R/s400/FullSizeRender+%252817%2529.jpg" width="398" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">"oh liv, you light up my life!"</td></tr>
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<span style="font-family: "verdana" , sans-serif;">well, that sounded right up my alley! plus, i ride a liv bike so i'm partial to the brand too! but i was a bit hesitant and scared to go for it. self doubt and anxiety kicked in whenever i sat down to write my 'actually, i can' story. i told the hubster about it and he encouraged me to go for it. not too long after that, taylor and mara dropped by for a visit and i was telling them about it too. taylor said, <i><b>"do it, mom! do it right now! otherwise you won't."</b></i> </span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span>
<span style="font-family: "verdana" , sans-serif;">so you know what? i did. i wrote it that evening with all the kids encouraging and supporting me. at one point, i got very overwhelmed and so anxious that i wanted to give up...or at least put it off for another day. plus, i felt so bad that taylor & mara were over and i was sequestered in another room writing...so much for family bonding! i told them, <b><i>"i can't do this. look at me all up in my head trying to write while you are here to hang out and i'm not even visiting with you!"</i></b> </span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span>
<span style="font-family: "verdana" , sans-serif;">but they just laughed and kept encouraging me and yelling, <b><i>"you can do it!"</i></b></span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span>
<span style="font-family: "verdana" , sans-serif;">i finally finished writing. then mara designed the graphics on my photo. then we submitted it just in time for the first friday of the contest. i had a lot of anxiety and 'not good enoughs' running through my head... but i was also excited and hopeful i had a shot at winning. </span><br />
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<span style="font-family: "verdana" , sans-serif;">friday dawned and i nervously checked the liv cycling IG account...</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span>
<span style="font-family: "verdana" , sans-serif;">i didn't win.</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span>
<i style="font-family: verdana, sans-serif;"><b>i felt so deflated...whooosh....just like someone let all the air out of my tires.</b></i><br />
<i style="font-family: verdana, sans-serif;"><b><br /></b></i>
<span style="font-family: "verdana" , sans-serif;">neither did i win the next week.</span><br />
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<span style="font-family: "verdana" , sans-serif;">or the one after that or the one after that.</span><br />
<span style="font-family: "verdana" , sans-serif;"><b><br /></b></span>:(<br />
<br />
<span style="font-family: "verdana" , sans-serif;"><b><i>then today my picture and story were posted on the liv cycling IG with this message attached;</i></b></span><br />
<blockquote class="tr_bq" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;">"One of the very first submissions for the Actually, I Can contest came to us from ticks and trust. Ever since, we haven't been able to get this amazing story out of our heads. At Liv, we are believers that a bike is more than just a bike and it is stories like these that prove bikes can train your mind and make you realize...Heck, yeah, I can! Congrats to {ticks and trust}, our week 5 winner!"</span></blockquote>
<span style="font-family: "verdana" , sans-serif;"><br /></span>
<span style="font-family: "verdana" , sans-serif;"><b><i>i promptly burst into tears and then did a happy dance! </i></b></span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span>
<span style="font-family: "verdana" , sans-serif;">i am truly honored and delighted to be chosen! riding has/is helping me re-define how i see myself and that <i>i am more than </i>the sum total of my illnesses and struggles. life is hard - each and every one of us carry with us pain and suffering. my hope is that sharing my story will inspire other women to believe that they are MORE THAN the fears they face and the challenges they live with.</span><br />
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<span style="font-family: "verdana" , sans-serif;"><b>the following is the piece that i submitted</b> (<i>albeit, there are a few extra wordy details here that had to be cut out in order for it to post on IG</i>):</span><br />
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<span style="font-family: "verdana" , sans-serif;">this past summer (2015), i tried down-hill mountain biking for the first time.</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span>
<span style="font-family: "verdana" , sans-serif;">and i LOVED it.</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span>
<span style="font-family: "verdana" , sans-serif;">like totally and completely LOVE LOVE LOVED IT.</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span><span style="font-family: "verdana" , sans-serif;">all it took was that first ride down a mountain bike park to put biking in my blood. it was one of the most liberating, revolutionary, empowering, life-changing moments i have experienced.</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span>
<span style="font-family: "verdana" , sans-serif;">i am obsessed with it now.</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span>
<span style="font-family: "verdana" , sans-serif;">like i can't get enough of it obsessed.</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span>
<span style="font-family: "verdana" , sans-serif;"><b><i>it was during that first rip down that mountain at silver star bike park that i realized <u>actually, i can get my life back</u>.</i></b></span><br />
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<span style="font-family: "verdana" , sans-serif;">i lost almost the entirety of my 30s to a chronic debilitating illness called neurological lyme disease. i spent half of that decade of my life hooked up to daily IVs and struggling to get out of bed. </span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span>
<span style="font-family: "verdana" , sans-serif;">in the darkest hours of the past 10 years, i feared i had lost the 'best years' of my life. even if i got some semblance of health back, what kind of life awaited me? most of the time i was terrified and in pain and now i was over 40.</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span>
<span style="font-family: "verdana" , sans-serif;">and isn't it all downhill after 40?</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span>
<span style="font-family: "verdana" , sans-serif;">oh yeah baby it is!</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span>
<span style="font-family: "verdana" , sans-serif;">on my bike, i am liberated from the pathogens that wreak havoc on my body and my mind. when i ride, i feel strong, brave and wild. my bike keeps me grounded and makes my fly. i'm not better {yet} but mountain biking has given me a belief in my recovery, trust in my body and is restoring my mind.</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span>
<span style="font-family: "verdana" , sans-serif;">and it makes me feel like a fearless bad-ass to boot.</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span>
<span style="font-family: "verdana" , sans-serif;">when i rip down a mountain i know to my inner most being that i am strong. i am brave. and actually, i can get my life back. one ride at a time. </span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span>
<span style="font-family: "verdana" , sans-serif;"><i>thank you to liv cycling for the amazing work you do to encourage and empower women! </i></span><br />
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<span style="font-family: "verdana" , sans-serif;"><b>**got my fingers crossed that i win the bike in september!**</b></span><br />
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<span style="font-family: "verdana" , sans-serif;"></span><br /></div>
s.http://www.blogger.com/profile/02214787682053856588noreply@blogger.com1tag:blogger.com,1999:blog-1032680752522787900.post-44784677710118857062016-05-01T13:54:00.000-07:002016-05-04T14:21:54.957-07:00Canadian Federal Framework on Lyme<div dir="ltr" style="text-align: left;" trbidi="on">
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<span style="font-family: "verdana" , sans-serif;">may is lyme disease awareness month! </span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span>
<span style="font-family: "verdana" , sans-serif;">and this year, </span><b style="font-family: Verdana, sans-serif;"><i>Canada is holding a conference to develop a federal framework on Lyme disease on May 15-17th, 2016!</i></b><span style="font-family: "verdana" , sans-serif;"> </span><span style="font-family: "verdana" , sans-serif;"> </span></div>
<blockquote class="tr_bq" style="text-align: justify;">
<span style="font-family: "trebuchet ms" , sans-serif;"><b><i>(OTTAWA, PRESS RELEASE) May 1, 2016</i></b> - “This year, Lyme Disease Awareness month presents a time to reflect on those Canadians affected by Lyme Disease as well as <b><i>an opportunity for action</i></b>. From May 15th-17th, 2016, in accordance with the Federal Framework on Lyme Disease Act – my private member’s bill that became law in December of 2014 – <b><i>the Minister of Health will hold a conference to develop a new set of guidelines that will help prevent and reduce Lyme disease-related health risks to Canadians</i></b>."</span><span style="text-align: left;"> </span></blockquote>
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<span style="font-family: "trebuchet ms" , sans-serif;">~ Elizabeth May, MP (<a href="http://%28ottawa%2C%20press%20release%29%20may%201%2C%202016%20-%20“this%20year%2C%20lyme%20disease%20awareness%20month%20presents%20a%20time%20to%20reflect%20on%20those%20canadians%20affected%20by%20lyme%20disease%20as%20well%20as%20an%20opportunity%20for%20action.%20from%20may%2015th-17th%2C%202016%2C%20in%20accordance%20with%20the%20federal%20framework%20on%20lyme%20disease%20act%20–%20my%20private%20member’s%20bill%20that%20became%20law%20in%20december%20of%202014%20–%20the%20minister%20of%20health%20will%20hold%20a%20conference%20to%20develop%20a%20new%20set%20of%20guidelines%20that%20will%20help%20prevent%20and%20reduce%20lyme%20disease-related%20health%20risks%20to%20canadians.%22%20%7Eelizabeth%20may%2C%20mp/" target="_blank">source</a>)</span></blockquote>
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<span style="font-family: "verdana" , sans-serif;">This conference is being held in response to Bill C-442 that was first presented by Elizabeth May as a Private Members Bill calling for a </span><i style="font-family: verdana, sans-serif;"><u>"National Strategy for Lyme Disease in Canada"</u></i><span style="font-family: "verdana" , sans-serif;"> in May 2012 and passed by senate into law in December 2014. Bill C-442 called for the development of a national strategy to address the challenges of the timely recognition, diagnosis, and treatment of Lyme disease. The bill also called for funding for provinces and territories to implement the strategy.</span>(<i>source: <a href="http://elizabethmaymp.ca/statement-from-elizabeth-may-for-lyme-disease-awareness-month/" target="_blank">Elizabeth May, MP</a></i>)<br />
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<b><i><span style="font-family: "verdana" , sans-serif;">“I hope the framework will be an important step forward as we work together to ensure that fewer Canadian families suffer from the consequences of Lyme disease.” </span></i></b></div>
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(~Elizabeth May, MP)</div>
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<span style="font-family: "verdana" , sans-serif;">Everyone worked hard in getting Bill C-442 passed in order to have this conference! </span><b style="font-family: verdana, sans-serif;"><i>We need to continue that effort by showing the government that there is a lot of interest, so please go to the links below and register.</i></b><span style="font-family: "verdana" , sans-serif;"> Registration is free and will enable you to watch the conference from the comfort of your home/office. It literally only takes a few minutes to sign up!</span><br />
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<b><i><a href="http://www.healthycanadians.gc.ca/diseases-conditions-maladies-affections/disease-maladie/lyme/federal-framework-conference-cadre-federal/alt/registration-enregistrement-eng.pdf" target="_blank">REGISTER BY CLICKING ON THIS LINK:</a></i></b><br />
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<b><i><br /></i></b><a href="http://www.healthycanadians.gc.ca/diseases-conditions-maladies-affections/disease-maladie/lyme/federal-framework-conference-cadre-federal/alt/registration-enregistrement-eng.pdf">http://www.healthycanadians.gc.ca/diseases-conditions-maladies-affections/disease-maladie/lyme/federal-framework-conference-cadre-federal/alt/registration-enregistrement-eng.pdf</a><br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhUu8UUtCSEtmKinDJVoY5RyNmapFFJIKFFg4qTk02WzaUFIZ9w7iuJvQq1Rj1Hu97Xn9QDrDYcO88YHdDDteEivxN7Notzci7xXXlgbHeJ7vqfutANA5Oj-sdnOskgcaCi5mK-m3GaCegj/s1600/FullSizeRender+%252815%2529.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhUu8UUtCSEtmKinDJVoY5RyNmapFFJIKFFg4qTk02WzaUFIZ9w7iuJvQq1Rj1Hu97Xn9QDrDYcO88YHdDDteEivxN7Notzci7xXXlgbHeJ7vqfutANA5Oj-sdnOskgcaCi5mK-m3GaCegj/s400/FullSizeRender+%252815%2529.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Source: <a href="http://lymestats.org/">lymestats.org</a></td></tr>
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<span style="font-family: Trebuchet MS, sans-serif;">"Researchers note that the geographic range of Lyme disease- carrying ticks has expanded from a small pocket in the northeast of the United States to a wide southern area of Canada. In light of potentially serious health care issues, this bill focuses national attention on preventing and mitigating Lyme disease across Canada. It offers constructive suggestions about what more can be done to help prevent, identify and treat the disease." ~ <a href="http://canlyme.com/2014/09/20/canadas-bill-c-442-an-act-respecting-a-federal-framework-on-lyme-disease-passes-2nd-reading-in-the-senate/" target="_blank">Honorable Janis G. Johnson</a> </span></div>
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<span style="font-family: "verdana" , sans-serif;"><b><i>Anyone, anywhere is at risk for contracting Lyme Disease</i></b>. Canadian scientists have predicted that 80% percent of Canada will be living in areas at risk for lyme disease by the year 2020. So please encourage family, friends and co-workers to register on-line and learn more about Lyme Disease. </span><br />
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<span style="font-family: "verdana" , sans-serif;">Thank You! </span><br />
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s.http://www.blogger.com/profile/02214787682053856588noreply@blogger.com0tag:blogger.com,1999:blog-1032680752522787900.post-38238785849208309862016-04-26T18:58:00.003-07:002016-04-26T19:16:49.941-07:00WONDERLAND<div dir="ltr" style="text-align: left;" trbidi="on">
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<span style="font-family: "verdana" , sans-serif;"><b><i>i'm just another Alice who's trying to find her way out of her head</i></b></span></div>
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<span style="font-family: "verdana" , sans-serif;"><b><i> and into a wonderland. </i></b></span></div>
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<span style="font-family: "verdana" , sans-serif;"> <span style="font-size: xx-small;">~V. Nada</span></span></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhuq5AnfqzAewmXes-sRJ5Yt9CLjDSEyI5sGdfmbJ1nonUpoDtPByC6N4DK-g3OfA520iJ5TVFsrPHdgO7lygwIg99yPJUnsoO_xOJJa1g5Q9KOfqDKqdlD7FlUlVgHexZ6ZwzmcKESjnRU/s1600/FullSizeRender+%252826%2529.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhuq5AnfqzAewmXes-sRJ5Yt9CLjDSEyI5sGdfmbJ1nonUpoDtPByC6N4DK-g3OfA520iJ5TVFsrPHdgO7lygwIg99yPJUnsoO_xOJJa1g5Q9KOfqDKqdlD7FlUlVgHexZ6ZwzmcKESjnRU/s320/FullSizeRender+%252826%2529.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">wonderland trail - fall 2015</td></tr>
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<span style="font-family: "verdana" , sans-serif;">as i mentioned in <a href="http://ticksandtrust.blogspot.ca/2016/04/healing-takes-courage.html" target="_blank">healing takes courage</a>, i've been dealing with a flare up of panic attacks, uncontrollable vomiting and <a href="http://ticksandtrust.blogspot.ca/2016/04/chronic-sorrow_16.html" target="_blank">endless, pink tears </a>recently. i'm not entirely sure what is all contributing to it but it had the markings of what a strep flare (<a href="http://pandasnetwork.org/understandingpandaspans/about-pandaspans/whatispandas/" target="_blank">pandas</a>) looks like with me (<i>sore throat, sudden onset panic attacks, intensifying anxiety and rapid weight loss</i>) i'm pretty sure there are other factors at play as well but for the time being, i'm back on amoxicillin and awaiting a phone appt with DR H (lyme doc) later this week. as per usual, the amoxi brought me back to baseline anxiety & stopped the panic attacks within 12 hours of first dose.</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span><span style="font-family: "verdana" , sans-serif;">that's the magic of moxi! lol </span><br />
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<span style="font-family: "verdana" , sans-serif;">when my anxiety is heightened, i feel caged and edgy. i have an inner trembling that i cannot shake and i can't sit still. since august (2015) biking has been my escape from that. so last week when i had a sudden and abrupt intensifying in my anxiety i pushed myself to go for a ride - even though i wasn't feeling all that well physically.</span><br />
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<span style="font-family: "verdana" , sans-serif;">about 45 minutes into the ride - i had my first outburst of uncontrollable sobbing followed by a panic attack (<i>this would be the first of what would be many in the days to come but the first time it's ever happened on a ride</i>)</span><br />
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<span style="font-family: "verdana" , sans-serif;"><b><i>the fact that it happened during a bike ride fully did me in. </i></b></span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjrhZTZIUx0UiCOjrBeZNnnHL9gLjA-y-wcFKx2PHE_dzEKPeXSfgUO0Kr5hfsdPX7QOX-3c_Fdh0g0h3th7lbS45f3pJX3gg7XMzdfsiCSR5bX-S5TeghBMwon2JU-JWOB8W2sEAzjLcGq/s1600/FullSizeRender+%252823%2529.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjrhZTZIUx0UiCOjrBeZNnnHL9gLjA-y-wcFKx2PHE_dzEKPeXSfgUO0Kr5hfsdPX7QOX-3c_Fdh0g0h3th7lbS45f3pJX3gg7XMzdfsiCSR5bX-S5TeghBMwon2JU-JWOB8W2sEAzjLcGq/s400/FullSizeRender+%252823%2529.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Wonderland - Spring 2016</td></tr>
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<span style="font-family: "verdana" , sans-serif;">riding is the one place and the only time i am totally free from anxiety - my head is clear and i feel happy and free. and yet, there i was on my knees on the side of a trail sobbing and shaking and feeling like i was losing my mind.</span><br />
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<span style="font-family: "verdana" , sans-serif;"><span style="font-family: "verdana" , sans-serif;"><b><i>i was unable to escape</i></b> this sense of overwhelming grief and alarming sense of doom, my</span><span style="font-family: "verdana" , sans-serif;"> thoughts spinning wildly, chest raggedly heaving, stomach painfully constricting, and an inner trembling so intense it knocks the wind out of me and causes my legs to give out beneath me. a panic attack is like toppling head first into a rabbit hole -</span></span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;"><i>Rabbit Hole - the term comes from Alice in Wonderland where she fell down the Rabbit Hole into some bizarre stuff. It is commonly used as an expression or euphemism for a portal to a bizarre world with significantly strange happenings and extremely surreal situations.</i></span></blockquote>
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<span style="font-family: "verdana" , sans-serif;">its a chaotic whirlwind of surreal images and overpowering emotions and it tosses me mercilessly to and fro - the gale force winds of anxiety quickly sweep away my ability to discern truth from lies - during an anxiety or panic attack, i truly believe that <i>this is me, this is how i always am and how i will always be</i> - i am wholly convinced of that as fact not fiction. </span><span style="font-family: "verdana" , sans-serif;">i don't lose touch with reality but i can't find my way out of the rabbit hole...and </span><span style="font-family: "verdana" , sans-serif;">now that was happening on a ride!?!</span><br />
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<span style="font-family: "verdana" , sans-serif;">are you freaking kidding me?</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span><b style="font-family: verdana, sans-serif;"><i>that overwhelmed me with a sense of desperation, sorrow and rage.</i></b><br />
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<span style="font-family: "verdana" , sans-serif;"><i>is there no part of me that can be untouched by the scourge of strep? is there no place left untainted by the sting of lyme? is there nothing sacred nor any place protected from where the loathsome tendrils of anxiety seeps in and chokes life into a limp, lifeless, tear-stained rag doll.</i></span><br />
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<span style="font-family: "verdana" , sans-serif;">it eventually passed and i got my back on my bike and rode down the mountain. but i was left rattled. unsettled. grieved. and fearful that i had lost the one thing that literally keeps me sane.</span><br />
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<span style="font-family: "verdana" , sans-serif;"><b><i>could it happen again?</i></b> </span><br />
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<span style="font-family: "verdana" , sans-serif;">biking is my happy place. the sense of wonder and joy and freedom i experience on my bike is something i cherish. </span><br />
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<span style="font-family: "verdana" , sans-serif;">could that have been taken from me now?</span></i></b><br />
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<span style="font-family: "verdana" , sans-serif;">i've lost so much to these diseases - <i><b>could i have now lost this thing that has been my beauty in the ashes?</b></i></span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhbFiKXXXrrpk9AwbGhiejUCf7IQTCU_fiXPtzu1p2SyAhe13c0APx8ODzLqro5XpJcAUS_1eXXVSquOf2bez8meBMOw-1086sK3OA84_zAbBjX6H_36jaH0GubmxoSZOzjed4ufI6kcYae/s1600/FullSizeRender+%252822%2529.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhbFiKXXXrrpk9AwbGhiejUCf7IQTCU_fiXPtzu1p2SyAhe13c0APx8ODzLqro5XpJcAUS_1eXXVSquOf2bez8meBMOw-1086sK3OA84_zAbBjX6H_36jaH0GubmxoSZOzjed4ufI6kcYae/s400/FullSizeRender+%252822%2529.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Wonderland - Spring 2016</td></tr>
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<span style="font-family: "verdana" , sans-serif;">those questions and thoughts haunted me over the next few days...i knew i'd have to set about to answering them with another ride but i was too physically and emotionally drained. </span><br />
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<span style="font-family: "verdana" , sans-serif;">6 days passed. </span><br />
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<span style="font-family: "verdana" , sans-serif;">then sunday dawned and i looked at the hubster and said, </span><br />
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<span style="font-family: "verdana" , sans-serif;"><b><i>"today we ride for tomorrow we may die."</i></b></span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjRw925vy-cdgsP5TTXWK4Aj3qt8f-rHdd4YxSz5DBpKIvSTs2tf0oLvGDKSZylGpR-hrdC5uqwswS1uShGw_xTLLbBNJTUE6THE7Ho8p7vqv9IAYb8co8D0OjoYn7q-k2wUPFD-6qshdy7/s1600/FullSizeRender+%252828%2529.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjRw925vy-cdgsP5TTXWK4Aj3qt8f-rHdd4YxSz5DBpKIvSTs2tf0oLvGDKSZylGpR-hrdC5uqwswS1uShGw_xTLLbBNJTUE6THE7Ho8p7vqv9IAYb8co8D0OjoYn7q-k2wUPFD-6qshdy7/s400/FullSizeRender+%252828%2529.jpg" width="300" /></a></div>
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<span style="font-family: "verdana" , sans-serif;"><i>ok. i didn't exactly say that...i'm almost but not quite that dramatic. lol.</i></span><br />
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<span style="font-family: "verdana" , sans-serif;">we tossed around some ideas on where to ride. i had it in my mind and heart, that i wanted to head up to squamish and ride a trail called 'wonderland'. we had ridden up there once before (fall 2015) and i just remember that wonderland had filled me with wonder - with it's spectacularly vivid hues of green, eclectic mix of vegetation and towering, moss laden trees it had felt magical and majestic. plus the name of it in context with my life seemed rather fitting (<i>and yes i am dramatic enough to think of that</i>).</span><br />
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<span style="font-family: "verdana" , sans-serif;">off we went.</span><br />
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<span style="font-family: "verdana" , sans-serif;"><i>the trail was everything i remembered it to be </i></span><br />
<span style="font-family: "verdana" , sans-serif;"><i>and</i></span><br />
<span style="font-family: "verdana" , sans-serif;"><i>i was everything i am when i am on my bike. </i></span><br />
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<span style="font-family: "verdana" , sans-serif;"><b><i>free. happy. hooting and hollering. alive. giddy.</i></b></span><br />
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<span style="font-family: "verdana" , sans-serif;">i was ripping along and thinking, "<i>oh, its just so pretty i should slow down and take it all in...maybe even stop and take some photos...</i>" - but then i thought, '<i>nah.</i>' - once i'm riding it's hard to stop. i just wanna go. and i wanna go fast.</span><br />
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<span style="font-family: "verdana" , sans-serif;">mere moments after having those thoughts, i got some air going over a drop and my tire hit the end of a root that was poking through the loam. instant flat. i have tubeless tires so that takes skill! </span><br />
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<span style="font-family: "verdana" , sans-serif;">but the flat did not deflate my mood. </span>
<span style="font-family: "verdana" , sans-serif;">i took the moment to stop and smell the forest. hear the birds. to be still. </span><span style="font-family: "verdana" , sans-serif;">i snapped some photos...and i even learned how to change a flat.</span><br />
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<span style="font-family: "verdana" , sans-serif;"><b><i>wonder of all wonders, i was able to be fully in the moment without movement or sound.</i></b> </span><br />
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<span style="font-family: "verdana" , sans-serif;">sometimes, i listen to music when </span><span style="font-family: "verdana" , sans-serif;">i ride (just one headphone in) because it helps me with balance and rhythm. ironically, when the flat occurred, i was listening to twenty one pilots song called <a href="http://www.azlyrics.com/lyrics/twentyonepilots/ride.html" target="_blank">'ride'</a>...</span><br />
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<span style="font-family: "verdana" , sans-serif; font-size: small; text-align: left;"><i><b>"i've been thinking too much. help me.</b></i></span></div>
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<span style="font-size: small; text-align: left;"><i><b><span style="font-family: "verdana" , sans-serif;">oh, oh, i'm falling, </span><span style="font-family: "verdana" , sans-serif;">so i'm taking my time on my ride"</span></b></i></span></div>
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<span style="font-family: "verdana" , sans-serif;">so i took my time on my ride down wonderland. then we booted up to alice lake and had a nice climb up a trail called '50 Shades of Green' and a fun shred down a run called 'Credit Line'...which was full of rocks, berms and root drops that made my heart sing (and no more flats - so no pictures from those trails!)</span><br />
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<span style="font-family: "verdana" , sans-serif;">it was an incredible day soaking in the breathtakingly vibrant vegetation and rad trails...</span><br />
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<span style="font-family: "verdana" , sans-serif;"><span style="font-style: italic; font-weight: bold;">best of all, it was all ride and NO cycling thoughts!</span></span></div>
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<span style="font-family: "verdana" , sans-serif;">PS</span><br />
<span style="font-family: "verdana" , sans-serif;"><i>Wonderland is also a walking trail. so if you don't ride you can still enjoy it - i highly recommend checking it out!</i></span><br />
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<span style="font-family: "verdana" , sans-serif;"><i>PPS</i></span><br />
<span style="font-family: Verdana, sans-serif;"><b><i>it's tick season so be tick aware! wear repellents and do tick checks!</i></b></span><br />
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s.http://www.blogger.com/profile/02214787682053856588noreply@blogger.com2tag:blogger.com,1999:blog-1032680752522787900.post-86561711951438769642016-04-25T21:57:00.000-07:002016-04-26T10:01:15.603-07:00HEALING TAKES COURAGE<div dir="ltr" style="text-align: left;" trbidi="on">
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<span style="font-family: "verdana" , sans-serif;">the boy's staples came out last week...</span><br />
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<span style="font-family: "verdana" , sans-serif;">he was told he has to be careful so as not to disturb the healing process. he has to go easy so as not to put strain on his freshly healing incision. no heavy lifting but he has to be brave and gently stretch it even though it hurts. he must be patient with the process.</span><br />
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<span style="font-family: "verdana" , sans-serif;">his broken skin and fragmented bones are healing. this is good.</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span>
<span style="font-family: "verdana" , sans-serif;"><b><i>so then why am i splitting apart at the seams?</i></b></span><br />
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<span style="font-family: "verdana" , sans-serif;">last week was a haze of panic attacks and uncontrollable episodes of vomiting. the last few days have been better but i'm still bawling at the drop of a hat (and i need a hat to cover up my hair color drama)</span><br />
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<span style="font-family: "verdana" , sans-serif;"><b><i>what is going on?</i></b></span><br />
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<span style="font-family: "verdana" , sans-serif;"><i>is it one of the stealth pathogens that lie in my body - like thieves in the night waiting for a moment of unguarded weakness strike?</i></span><br />
<span style="font-family: "verdana" , sans-serif;"><i><br /></i></span>
<span style="font-family: "verdana" , sans-serif;"><i>is it the years of watching my child(ren) fight their own battles with chronic lyme? and the invasive grief and holy hell fury i feel in the face of their suffering? when a momster can't make it better...well, that splits your heart wide and bleeds it dry.</i></span><br />
<span style="font-family: "verdana" , sans-serif;"><i><br /></i></span>
<span style="font-family: "verdana" , sans-serif;"><i>is it the orange roots and hair balls i'm leaving in my crying, puking, trembling wake?</i></span><br />
<span style="font-family: "verdana" , sans-serif;"><i><br /></i></span>
<span style="font-family: "verdana" , sans-serif;"><i>is it just life? this lyme life that we live...with one crisis after the next happening and no time to set straight the brokenness in between?</i></span><br />
<span style="font-family: "verdana" , sans-serif;"><i><br /></i></span>
<span style="font-family: "verdana" , sans-serif;"><i>or am i so broken and damaged and so lacking in resilience that i'm just coming unglued?</i> (that's what my anxiety screeches in my ear)</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span>
<span style="font-family: "verdana" , sans-serif;">it's probably a combination of all of the above.</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span>
<span style="font-family: "verdana" , sans-serif;">yup. the past 10 years...coupled with the last 7 months have been a wild ride. chaotic. sorrowful. painful. bewildering. they've taken a toll. they've cut deep and wounded my momster heart.</span><br />
<span style="font-family: "verdana" , sans-serif;"><b><i><br /></i></b></span>
<span style="font-family: "verdana" , sans-serif;"><b><i>and yet, <a href="http://ticksandtrust.blogspot.ca/2016/04/piecing-it-together.html" target="_blank">piece by piece</a> the boy is healing.</i></b></span><br />
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<span style="font-family: "verdana" , sans-serif;">his surgeon's advice is worth taking to heart for all of us.</span><br />
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<span style="font-family: "verdana" , sans-serif;">take care. be gentle. go easy. be brave.</span><br />
<b><i><span style="font-family: "verdana" , sans-serif;"><br /></span>
<span style="font-family: "verdana" , sans-serif;">healing takes time, courage and patience...and it can even hurt - especially when the wound is fresh and runs deep.</span></i></b><br />
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<span style="font-family: "verdana" , sans-serif;">but i can heal. we all can. never give up.</span><br />
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s.http://www.blogger.com/profile/02214787682053856588noreply@blogger.com0tag:blogger.com,1999:blog-1032680752522787900.post-66662582850826977842016-04-20T16:08:00.001-07:002016-04-20T16:20:29.404-07:00LYME LDI IMMUNOTHERAPY REVIEW<div dir="ltr" style="text-align: left;" trbidi="on">
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<span style="font-family: "verdana" , sans-serif;"><i>LDI/LDA IMMUNOTHERAPY</i> is a fairly new treatment for lyme. i know there is a lot of buzz about it in the lyme commuity. some folks are finding it very helpful. others not so much. i have had several inquiries asking for an update on our experience with it. </span><span style="font-family: "verdana" , sans-serif;">it's hard to believe that both sparky and i started this treatment almost exactly year ago today! </span><br />
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<span style="font-family: "verdana" , sans-serif;">(you can read my original post about LDI/LDA Immunotherapy <a href="http://ticksandtrust.blogspot.ca/2015/04/ldi-immunotherapy-for-lyme.html" target="_blank">by clicking this link</a>)</span><br />
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<span style="font-family: "verdana" , sans-serif;">it has taken a really long time for me to reach any sort of conclusion on whether or not it is helping us for several reasons:</span><br />
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<span style="font-family: "verdana" , sans-serif;"><b><i>first,</i></b> <b><i>for the longest time, i really felt like i had no definitive answers on whether it was helping, flaring, or doing nothing at all! </i></b></span><br />
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<span style="font-family: "verdana" , sans-serif;">second, it is a slow treatment process - the dosing occurs once every 7 weeks. even with using ART testing, it can take several rounds before you find the 'right' dose for your body... which means many months can go by before you even find a therapeutic dose! </span><span style="font-family: "verdana" , sans-serif;">then it can take several more rounds at the therapeutic dose before you experience any sustainable/notable changes in symptoms. </span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span><span style="font-family: "verdana" , sans-serif;">third, add in the usual unpredictability and complications that are par course for treating lyme and well, the results of LDI/LDA have literally been about as clear as mud for the longest time! </span><br />
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<span style="font-family: "verdana" , sans-serif;">fourth, there has been a lot of drama and trauma in this house in the past 7 months which has made writing difficult.</span><br />
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<span style="font-family: "verdana" , sans-serif;">here's the basic crux of it: </span><b style="font-family: verdana, sans-serif;">it's a mixed review.</b><br />
<b><i><span style="font-family: "verdana" , sans-serif;"><br /></span>
</i></b><span style="font-family: "verdana" , sans-serif;"><u style="font-style: italic; font-weight: bold;">it does not appear</u><i> to have worked for sparky.</i> he is no longer on it. but wait, we may re-start it down the road! </span><br />
<b><i><span style="font-family: "verdana" , sans-serif;"><br /></span>
</i></b><span style="font-family: "verdana" , sans-serif;"><i><u style="font-weight: bold;">it does appear</u> to be working for me...although</i> i have not used it to treat lyme (yet)...</span><i style="text-align: justify;"><i><span style="font-family: "verdana" , sans-serif;"> </span></i></i><i style="text-align: justify;"><i><span style="font-family: "verdana" , sans-serif;"><b>i really do believe that this therapy is helping my body heal</b> - </span></i></i><i style="text-align: justify;"><i><span style="font-family: "verdana" , sans-serif;">i think my experience with using it to treat my other issues (strep, mold, mycoplasma, chemical & food sensitivities) is relevant to the lyme/chronic illness community as many of the issues i have are co-morbid with lyme. i am working on writing an update about it.</span></i></i><br />
<i style="text-align: justify;"><i><span style="font-family: "verdana" , sans-serif;"><br /></span></i></i>
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<span style="font-family: "verdana" , sans-serif;">i know most lyme patients are seeking info specifically for LDI in regards to lyme. so the remainder of this post will address</span><span style="font-family: "verdana" , sans-serif;"> my take on sparky's experience as he was specifically treated for lyme with it. </span><br />
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<span style="font-family: "verdana" , sans-serif;"><br /></span><span style="font-family: "verdana" , sans-serif;">for weeks i've been laboring over this update - ack. i'm so frustrated with it! i guess i've struggled with thinking what is the point of writing a detailed account when the simplified answer is <b><i>"no, it didn't work"</i></b>.... on the other hand, i'm a detail oriented sort of girl and so i quite naturally digress to writing lengthy accounts. all things considered, even though it doesn't appear to have worked for sparky, i do think LDI is a worthy tool to consider in the fight against lyme. </span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span>
<span style="font-family: "verdana" , sans-serif;">initially, LDI therapy was brought up in regards to using it to treat sparky after his relapse with lyme began in jan 2015 (<a href="http://ticksandtrust.blogspot.ca/2015/03/reality-of-relapse.html" target="_blank">read about his remission/relapse here</a>)</span><br />
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<span style="font-family: "verdana" , sans-serif;">parker has immunodeficiencies - primarily of iga, igm and igg. i also have immunodeficiencies so there could be a genetic correlation but there is speculation by his medical team that living with lyme has depleted his immunoglobulin levels. we did not know (still don't) know what caused his relapse in january 2015 but given all the immunological findings on him, we did feel like there an auto-immune component was a piece of the puzzle. </span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span><span style="font-family: "verdana" , sans-serif;">therefore, trying LDI made good sense...</span><span style="font-family: "verdana" , sans-serif;">yet, treating lyme is a tricky balancing act and knowing when to add additional therapies into your treatment plan often presents a conundrum</span><span style="font-family: "verdana" , sans-serif;">. at the time the LDI was presented to us as a treatment option, sparky was 4 months into his relapse. he had only been back on abx and iv therapy to treat his relapse for 6 weeks. at that point, the abx treatment had stopped his downward spiral and he was just beginning to show signs of improvement.</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span>
<span style="font-family: "verdana" , sans-serif;">we knew he was at a vulnerable place but the doctor that recommended he start on LDI has been part of his medical team since 2010. she knows his case and his body really well. we all agreed that LDI was the next right step even though we were concerned about provoking an inflammatory response while his body was already pretty reactionary. </span><br />
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<span style="font-family: "verdana" , sans-serif;"><b><i>LDI THEORY note:</i></b> </span><br />
<i style="font-family: 'trebuchet ms', sans-serif; text-align: justify;"><b>basically, the goal of LDI treatment is to find a dose that is big enough to signal the immune system to calm down but small enough to not cause a huge inflammatory reaction. finding the right dose can take a few cycles... it is not unusual to have big flares when first starting. once the appropriate dose is found, there can still be flares in symptoms for the 7 days following each dose. as treatment continues, the patient should begin to experience a gradual lessening of symptoms and flares between each 7 week cycle of treatment. </b></i><br />
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<span style="font-family: "verdana" , sans-serif;">sparky's doctor wanted to avoid a big flare </span><span style="font-family: "verdana" , sans-serif;">since he was still in a weakened state from his relapse, so he was prescribed a very micro dose. </span><span style="font-family: "verdana" , sans-serif;"> </span><span style="font-family: "verdana" , sans-serif;"><i>additionally, his doctor felt that an underlying issue with strep could be contributing to his never ending joint pain. </i></span><span style="font-family: "verdana" , sans-serif;">since LDI for strep does not historically cause huge flares, he was started on the LDI for Strep first. </span><br />
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<span style="font-family: "verdana" , sans-serif;"><b><i>he had his first strep LDI dose in april 2015</i></b>. </span><br />
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<span style="font-family: "verdana" , sans-serif;">he had no discernible response - good or bad - in any of his symptoms.</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span><span style="font-family: "verdana" , sans-serif;"><b><i>he was given the LDI dose for lyme the following week. </i></b></span><br />
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<span style="font-family: "verdana" , sans-serif;">unfortunately, even the baby dose caused a huge flare. </span><br />
<span style="font-family: "verdana" , sans-serif;">(you can read details about that at <a href="http://ticksandtrust.blogspot.ca/2015/07/the-pretty-pill-protocol-mini-update-on.html" target="_blank">The Pretty Pill Protocol</a>)</span><br />
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<span style="font-family: "verdana" , sans-serif;">this sucked and caused us concern but it was not entirely unexpected. altho' the duration of his flare - 6 weeks - caught everyone off guard. but there were so many variables impacting his health, that it was really difficult to know whether the LDI was the full cause of the flare or just a contributing factor. his medical team felt that it was important to keep him on it.</span><br />
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<span style="font-family: "verdana" , sans-serif;">so we decided to stick it out and give it another try with an even smaller dose. </span><br />
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<span style="font-family: "verdana" , sans-serif;"><b><i>7 weeks later, he was given his next dose. </i></b></span><br />
<span style="font-family: "verdana" , sans-serif;">he did not have as big a flare and seemed to do a bit better for a few weeks following that one.</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span><span style="font-family: "verdana" , sans-serif;">after his third dose, he had a flare and his body never seemed to right itself after that. his symptoms continued to be all over the map all the time and there was a slow but steady decline. </span><br />
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<span style="font-family: "verdana" , sans-serif;"><b><i>all in all, he had 3 doses of LDI for </i></b></span><span style="font-family: "verdana" , sans-serif;"><b><i>lyme and strep. which is 21 weeks in total.</i></b> </span><br />
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<span style="font-family: "verdana" , sans-serif;"><b><i>his fourth dose</i></b> was due during the first week that he was going to be in treatment in kansas. we debated whether or not to bring it and continue it or not. LDI is in pre-loaded syringes and it needs to be kept cold. </span><span style="font-family: "verdana" , sans-serif;"> bringing it with us meant we'd have to travel with a loaded syringe on ice. with 2 days of INTERNATIONAL travel -border crossing, a 5 hour drive plus 2 flights - ahead of us we knew it could potentially complicate our travelling. trust me, crazy stuff happens when we travel! if you've been a blog reader for a while then you will know that we NEVER FLY UNDER THE RADAR (remember <a href="http://ticksandtrust.blogspot.ca/2009/12/security-breach.html" target="_blank">Sandeep and The Security Breach</a>?) our trip to kansas was NO different. even without the syringe on board, there was airport drama this time around! </span><br />
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<span style="font-family: "verdana" , sans-serif;">while waiting for our connecting flight to witchita from chicago, imagine my surprise when i looked down at my boarding pass and discovered i was flying as a man! <b><i>OKAY...AND NO ONE QUESTIONED THAT?</i></b> there's a hit to the ego.</span><br />
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<span style="font-family: "verdana" , sans-serif;">but wait that was no biggie compared to what happened on our return flight. <i>that story is worthy of it's own post - it's one of those 'only that would happen to shannon' ones.</i></span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span><span style="font-family: "verdana" , sans-serif;">back to the reasons for leaving the LDI behind - when we made the trip to kansas we felt like we were embarking on a whole new methodology of treating sparky. we wanted to fully embrace the new. given that we had not really seen any benefit from the LDI and he was steadily declining, we opted to let it go.</span><br />
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<span style="font-family: "verdana" , sans-serif;">i guess the rest is history as they say...</span><br />
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<span style="font-family: "verdana" , sans-serif;">we went to kansas and that didn't work out so well. (read about that at <a href="http://ticksandtrust.blogspot.ca/2016/02/hope-is-what-we-crave.html" target="_blank">hope is what we crave</a>.) we're still <a href="http://ticksandtrust.blogspot.ca/2016/04/piecing-it-together.html" target="_blank">piecing the puzzle</a> that is sparky together - and working towards next treatment steps. we have several upcoming doctor's appointments and that fourth dose of LDI is still sitting in our fridge. i don't think he is in any condition to re-start it right now but i'm not opposed to re-assessing it for him further down the road.</span><br />
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<span style="font-family: "verdana" , sans-serif;"><b><i>if you made it all the way to the bottom of this dry drivel, thank you for reading! i don't know that it this review will be of much benefit but i hope some one finds it helpful!</i></b> </span><br />
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<span style="font-family: "verdana" , sans-serif;"><b>PS</b> i am about half-way thru writing about my own experience with LDI/LDA. it's a more positive one.</span><br />
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s.http://www.blogger.com/profile/02214787682053856588noreply@blogger.com1tag:blogger.com,1999:blog-1032680752522787900.post-82553448938169453322016-04-16T12:05:00.000-07:002016-04-18T12:20:23.774-07:00CHRONIC SORROW<div dir="ltr" style="text-align: left;" trbidi="on">
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<i><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">"chronic sorrow is the presence of recurring intense feelings of grief in the lives of parents or caregivers with children who have chronic health conditions. at it's core, chronic sorrow is a normal grief response that is associated with an ongoing living loss. it is the emotion-filled chasm between "what is" versus the parent's view of "what should have been" </span></i></div>
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<i><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"> ~susan roos</span></i></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjmzSMPQevyrZH4514OWvKrSkQtG-mjyZx2yLPRDSpzUlm06ZIOSxGssjGxbSBkPkvG-WKjzbJJRsDbAAAidjk0w9ZiVkJGHXEwDAE7RFHaUIVRJxELUhk7xEIwG397wf9uMAYWU1856K64/s1600/FullSizeRender+%252811%2529.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjmzSMPQevyrZH4514OWvKrSkQtG-mjyZx2yLPRDSpzUlm06ZIOSxGssjGxbSBkPkvG-WKjzbJJRsDbAAAidjk0w9ZiVkJGHXEwDAE7RFHaUIVRJxELUhk7xEIwG397wf9uMAYWU1856K64/s400/FullSizeRender+%252811%2529.jpg" width="396" /></a></div>
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<span style="font-family: Verdana, sans-serif;"><b><i>purged some pent up grief today</i></b>...</span><br />
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<span style="font-family: Verdana, sans-serif;">sometimes out of nowhere you are struck by a torrential down pour of overwhelming emotion...some days i have a profound sense of grief for all that has been lost during the past 10 years of chronic illness. there's been a lot of loss. there may be many more years of it to come. adding to that, sparky's recent accident and subsequent hospital visits triggered many painful and distressing memories.</span></div>
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<span style="font-family: Verdana, sans-serif;"><b><i>sometimes life just feels overwhelmingly sad and tiring.</i></b></span><br />
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<span style="font-family: Verdana, sans-serif;">grief. fear. sadness. living loss. they are emotions you feel with your whole body, mind and spirit. they are heavy and they suck and it hurts to walk thru them.</span><br />
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<span style="font-family: Verdana, sans-serif;">healing is hard. it's a steady uphill slog. it's hard, exhausting and ugly. plus i'm dealing with a <strike>minor</strike> major hair color disaster at the moment so totally NOT feeling so cute right now either. (<i>just keeping it real</i>). part of me is like, <i>"ok, shan, whatever it's ONLY hair"</i> but on the other hand, it is really NOT nice. it's orange and yellow and that's NOT okay. </span><br />
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<span style="font-family: Verdana, sans-serif;"><b><i>some days nothing feels okay and everything feels sad and ugly.</i></b></span><br />
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<span style="font-family: Verdana, sans-serif;">and it all suddenly overpowered me as i was riding up a mountain bike trail on mt. seymour. all i could do was sink into a crumpled heap on the side of the trail, helmet askew over my fried hair, doing the big, loud UGLY CRY.</span><br />
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<span style="font-family: Verdana, sans-serif;">the grief, the pain, the sadness just bubbled to the surface and tears flowed unchecked down my cheeks splashing on my glasses before slowly rolling off and free-falling to the earth.</span><br />
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<span style="font-family: Verdana, sans-serif;">as the last few fell, the settled and remained on my glasses. through my blurred vision their pretty purple-pink hue caught my eye.</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg1cGupsk75MsmaCbsqLTwHzMU7bRhZR3mTu6oyP2jrECiwNuxk-y0Xto2jy7YSIrFGQi9W-_586IsvVnNI8DzRU5jaeqCS3UHPMe4oRI8gdV0VwiYO1AaHHfHFpi5pw33zMpqnuRE9hP1y/s1600/IMG_0717.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg1cGupsk75MsmaCbsqLTwHzMU7bRhZR3mTu6oyP2jrECiwNuxk-y0Xto2jy7YSIrFGQi9W-_586IsvVnNI8DzRU5jaeqCS3UHPMe4oRI8gdV0VwiYO1AaHHfHFpi5pw33zMpqnuRE9hP1y/s400/IMG_0717.JPG" width="400" /></a></div>
<span style="font-family: Verdana, sans-serif;"><b><i><br /></i></b></span>
<span style="font-family: Verdana, sans-serif;"><b><i>i saw my pain on my glasses...but the pain on my glasses was reflected in a beautiful light.</i></b></span><br />
<span style="font-family: Verdana, sans-serif;"><b><i><br /></i></b></span>
<span style="font-family: Verdana, sans-serif;">PS sorry the snotty kleenex made the shot! but a good cry is very cleansing - especially of the nasal passages! also, i have no idea how or why my tears were pink. probably from too many chemicals on my head </span><br />
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s.http://www.blogger.com/profile/02214787682053856588noreply@blogger.com0tag:blogger.com,1999:blog-1032680752522787900.post-64808763167156414492016-04-14T20:51:00.000-07:002016-04-14T20:55:56.107-07:00PIECING IT TOGETHER<div dir="ltr" style="text-align: left;" trbidi="on">
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<span style="font-family: "verdana" , sans-serif;"><b><i>one week post surgery and the boy went to school today.</i></b></span></div>
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<span style="font-family: "verdana" , sans-serif;">i spoke with the surgeon's office this morning and when i told them he was recovering well and had even gone to school today. </span><span style="font-family: "verdana" , sans-serif;">they exclaimed, <b><i>"that's amazing!"</i></b></span></div>
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<span style="font-family: "verdana" , sans-serif;"><br /></span><span style="font-family: "verdana" , sans-serif;">i thought to myself, <i>"yup. you're darn right it is."</i></span></div>
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<span style="font-family: "verdana" , sans-serif;"><br /></span><span style="font-family: "verdana" , sans-serif;">actually, they really have no idea how mind-blowingly amazing it is.</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhng8230ebLJSwlkaNaaE9ImCXmyCPX29mOh5esXwTmRGbRE0FGeQnaDBBG4B3jCfeaPn9JT4uvVQmP62GevY1Cxu4a94I6KFO_xvg2p6ovqqQ1IGWA_1M8hVOKQavT7kopgf5jxXQmmMPx/s1600/FullSizeRender+%25288%2529.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhng8230ebLJSwlkaNaaE9ImCXmyCPX29mOh5esXwTmRGbRE0FGeQnaDBBG4B3jCfeaPn9JT4uvVQmP62GevY1Cxu4a94I6KFO_xvg2p6ovqqQ1IGWA_1M8hVOKQavT7kopgf5jxXQmmMPx/s400/FullSizeRender+%25288%2529.jpg" width="397" /></a></div>
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<i><span style="font-family: "georgia" , "times new roman" , serif;"><b><span style="font-family: "trebuchet ms" , sans-serif;">"let me tell you something you already know...</span></b><b style="text-align: justify;"><span style="font-family: "trebuchet ms" , sans-serif;"> the world ain't all sunshine and rainbows. it's a very mean and nasty place and i don't care how tough you are, it will beat you to your knees...and keep you there permanently if you let it. you, me, or nobody is gonna hit as hard as life but it ain't about how hard you hit. it's about how hard you can get hit and keep moving forward. it's about how much you can take and keep moving forward. that's how winning is done." </span></b></span></i><br />
<span style="text-align: justify;"><span style="font-family: "trebuchet ms" , sans-serif;"><b> ~</b><i>rocky balboa</i></span></span></div>
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<span style="font-family: "verdana" , sans-serif;">just a short 6 weeks ago we were at quite possibly one of the lowest points we have ever been. sparky's situation was grim and we felt pretty hopeless.</span><br />
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<span style="font-family: "verdana" , sans-serif;">the 6 months following our trip to kansas were beyond hard. they were horrible and heartbreaking. they were horribly heartbreaking. </span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhdA_bfWWWIh8yj9dnGdTPBPfA8_6P69UwYw-xi6SKanPekIl1HNKl_1J3JRUbLprDYg3VjQOGTLuCyetCiO5FYBZwMhzdmALHgUT57d9INzNoKH9iOkxnA2jZe1KaZrpzt0lfGUVVZhjWe/s1600/FullSizeRender+%25289%2529.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhdA_bfWWWIh8yj9dnGdTPBPfA8_6P69UwYw-xi6SKanPekIl1HNKl_1J3JRUbLprDYg3VjQOGTLuCyetCiO5FYBZwMhzdmALHgUT57d9INzNoKH9iOkxnA2jZe1KaZrpzt0lfGUVVZhjWe/s400/FullSizeRender+%25289%2529.jpg" width="398" /></a></div>
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<span style="font-family: "verdana" , sans-serif;">we are working through all of it ... we have deep wounds that are in need of healing. we still feel bewildered, confused and confounded by all that has transpired. we are still trying to piece</span><span style="font-family: "verdana" , sans-serif;"> together the puzzle that is parker...especially in regard to his relapse (that started in january 2015) and then the monumental spiral downward that transpired after our trip in october (2015) to the treatment center in kansas. <b><i>the prevailing and confounding questions of course has been what the hek happened?!</i></b> what triggered the initial relapse in january 2015 and then what triggered or contributed to the rapid and accelerated decline in october.</span><br />
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<span style="font-family: "verdana" , sans-serif;">lyme and babesia are still an issue - that is a known and well-established fact but we figured there must be another underlying factor. that there was some missing piece to the puzzle has always been of concern to DR H. the hope was that this would be uncovered at the center in kansas.</span><br />
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<span style="font-family: "verdana" , sans-serif;">since november (2015) we have been working with DR H to put the pieces together...there has been a lot of brainstorming, testing, and treatments. </span><br />
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<span style="font-family: "verdana" , sans-serif;">there were multiple issues to investigate. the boy is a mystery. </span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEipl6EdFa3kUkr5he8P9i_xuVRy37ANOjKrsCmNdSuj_tTuydxH5mdauyqn7l2AWKfJP8GR-v4uz5QLaRA76HKxttaOJdVoe0-Ip3HcvhAxM8imniOIUP1t-sPv2T-u_MppCwfSuEwA48DN/s1600/FullSizeRender+%25287%2529.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEipl6EdFa3kUkr5he8P9i_xuVRy37ANOjKrsCmNdSuj_tTuydxH5mdauyqn7l2AWKfJP8GR-v4uz5QLaRA76HKxttaOJdVoe0-Ip3HcvhAxM8imniOIUP1t-sPv2T-u_MppCwfSuEwA48DN/s400/FullSizeRender+%25287%2529.jpg" width="393" /></a></div>
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<span style="font-family: "verdana" , sans-serif;">at the tail end of february (2016), we were able to identify a clear link between his joint pain and localized inflammation. this was a huge revelation as we had been trying to treat it from a brain involvement standpoint - the theory being that his brain may be caught in a neurological loop/misfiring pain signals as opposed to there being actual inflammation in his joints. once we identified this link it helped to narrow down the field as to underlying causes. </span><br />
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<span style="font-family: "verdana" , sans-serif;">heavy metal toxicity came to light as a strong possibility. DR H started parker on a heavy metal detox in march. he had never been treated for this. testing did reveal that he had high levels of several metals (cadmium, mercury, lead). once we began treating the localized inflammation and then added in a heavy metal detox things rapidly changed for the better.</span><br />
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<span style="font-family: "verdana" , sans-serif;">we are not in the home stretch by any means. so far what we are doing is working and he is feeling tons better but we haven't found some miracle cure either. i've been on what he is on and it's not helped me. i know others that have too. it seems to be the right thing for his body right now but whether or not it is healing him or just managing his symptoms is unknown. DR H is concerned that it is the latter. we are still trying to assemble all the factors at play. there is still testing and further investigation that needs to be done. as well as doctors appointments to schedule. of course, this has all been delayed since he went head first over the handle bars of his bike last week. (<i>called a <a href="http://world.std.com/~Jimf/biking/slang.html" target="_blank">"superman"</a> in mountain biking lingo)</i></span><br />
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<span style="font-family: "verdana" , sans-serif;">now he's literally being held together with 19 staples, 6 screws and a titanium plate.</span><br />
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<span style="font-family: "verdana" , sans-serif;"><b><i>so the boy is chock full of metals.</i></b></span><br />
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<span style="font-family: "verdana" , sans-serif;">how ironic.</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi34dC5sd6efkvOfC74WT-WwhunQgdE4v2lDDfEMslM4uuQ2_LAtRuQyUgudPvRt1SG4UJGNC6mg_vgTtTOd4tRwKArgD_Vi_yzEPLwfO-cLzHYi1XaaN8wv4C4QZWLMsvPOblrSMut6NHq/s1600/FullSizeRender+%25286%2529.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi34dC5sd6efkvOfC74WT-WwhunQgdE4v2lDDfEMslM4uuQ2_LAtRuQyUgudPvRt1SG4UJGNC6mg_vgTtTOd4tRwKArgD_Vi_yzEPLwfO-cLzHYi1XaaN8wv4C4QZWLMsvPOblrSMut6NHq/s400/FullSizeRender+%25286%2529.jpg" width="397" /></a></div>
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<span style="font-family: "verdana" , sans-serif;"><b><i>he is tough as nails. he's resilient. strong. brave. enduring. stoic. funny as hek. and my word is he a fighter. </i></b>the first 2 days after surgery were rough. he barely moved or spoke. it was tough. but what he's lived through in the past 7 years pales in comparison. he says the pain from lyme is worse than this.<i> can you even imagine?</i></span><br />
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<span style="font-family: "verdana" , sans-serif;">i am amazed by his spirit...and that he is pulling through this so remarkably well. </span><br />
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<span style="font-family: "verdana" , sans-serif;">is it the calm before hell breaks loose again? gosh, i hope not. of course </span><span style="font-family: "verdana" , sans-serif;">there is concern that this trauma to his body could push things into a tailspin again. we have been in touch with DR H's office several times since the accident and he has been started on additional antibiotics to treat any flare of lyme the accident could cause. </span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span><span style="font-family: "verdana" , sans-serif;">is there fear that one wrong move could split wide open what has been stitched together? absolutely. but we are picking up the pieces and tying to keep focused on moving forward. one. day. at. a. time. we are grateful to be where we are. we hope that this forward progression continues. our boy has been through enough. </span><br />
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<span style="font-family: "verdana" , sans-serif;"><b><i>ps don't give up</i></b></span><br />
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s.http://www.blogger.com/profile/02214787682053856588noreply@blogger.com5tag:blogger.com,1999:blog-1032680752522787900.post-21418120927793531262016-04-13T14:59:00.002-07:002016-04-13T15:01:14.622-07:00WHY I RIDE<div dir="ltr" style="text-align: left;" trbidi="on">
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<span style="font-family: "verdana" , sans-serif;"><b><i>"when i ride, all the chaos and noise in my head disappears and a calm settles upon me and i find total peace. on my bike i am liberated from the pathogens that wreak havoc on my body and my mind. my bike keeps me grounded yet makes me fly." ~s.</i></b></span><br />
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<span style="font-family: "verdana" , sans-serif;"></span><span style="font-family: "verdana" , sans-serif;">i ride because mountain biking is helping to heal me - mind, body, soul. that is the condensed version...however, the reasons behind riding are multi-faceted. i began writing this <i>'why i ride'</i> piece several weeks ago. in the course of hammering out my thoughts on riding it morphed into 4 separate pieces on mountain biking. <i>(all of which i'll be posting at some point.)</i></span><br />
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<span style="font-family: "verdana" , sans-serif;">turns out there are many reasons that i ride. what led me to downhill/enduro riding is the anxiety disorder i have because of the post-strep auto-immune illness i developed in spring of 2014. (read about it here - <a href="http://ticksandtrust.blogspot.ca/2014/11/this-is-my-brave.html" target="_blank">this is my brave</a>)</span><br />
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<span style="font-family: "verdana" , sans-serif;">here's the thing...</span>
<span style="font-family: "verdana" , sans-serif;">the strep thing and resulting mental health issues it caused - broke me mind, body, soul. it shattered my faith. it is something i am still grappling to come to terms with. there is something about being tossed over the edge sanity and plummeting into a rabbit hole of inescapable terror that unmercifully rips you apart and strips you to the core of your naked humanity. </span><br />
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<span style="font-family: "verdana" , sans-serif;">being blind-sided by intrusive thoughts that come out of thin air and are then accompanied by compulsions to follow through on is a terror i still can't quite find the words to explain. </span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhF-uWhOvI112QFcajFQ7ySt6bTrXhsiwI7s64IYcRCSKHVEz3USRyz70WyUg4KIaCvq1q2whzcHChznrimVkGTc5GL0zjE-FLttUHutNL16NWKHcQ1guDiAMIRS22FqlqpkolZq8JSPM8U/s1600/FullSizeRender+%25284%2529.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="362" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhF-uWhOvI112QFcajFQ7ySt6bTrXhsiwI7s64IYcRCSKHVEz3USRyz70WyUg4KIaCvq1q2whzcHChznrimVkGTc5GL0zjE-FLttUHutNL16NWKHcQ1guDiAMIRS22FqlqpkolZq8JSPM8U/s400/FullSizeRender+%25284%2529.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Riding is a flight from sadness...it also clears the head as does the hubster's photog skillz</td></tr>
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<span style="font-family: "verdana" , sans-serif;"><b><i>anxiety is a mind trip and it tears down the core of who you are and what you believe yourself to be.</i></b> at least it did for me. </span><span style="font-family: "verdana" , sans-serif;">it made me feel weak. useless. unworthy. cowardly. ashamed. i blamed myself for it. i thought i sucked for not being able to suck it up. and i was pretty sure everyone around me thought so too. </span><br />
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<span style="font-family: "verdana" , sans-serif;">while i am a true, solidly <a href="http://www.humanmetrics.com/personality/infj" target="_blank">INFJ</a> introvert who needs copious amounts of alone time, being social is something i have always enjoyed. i like people. i like parties. i give speeches. i bare my soul on the internet. so to suddenly live in fear of social interactions has been confounding. painful. isolating. destructive. demoralizing. </span><span style="font-family: "verdana" , sans-serif;"><i><b>social anxiety makes you </b></i></span><span style="font-family: "verdana" , sans-serif;"><i><b>ruminate over every conversation until the words of it - of what you should have said and the dumb things you did say</b></i> - swirl though your head as a mind-bending tornado of cascading self-doubt and self-hate. </span><br />
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<span style="font-family: "verdana" , sans-serif;">living with all-consuming fears and a sense of impending doom that i could identify as irrational but still become completely consumed by (<i>despite using all sorts of psychological tools to combat it and prayerfully & fervently pleading for deliverance from it</i>) left me feeling fatally flawed and spiritually defective. </span><br />
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<span style="font-family: "verdana" , sans-serif;">so that is bit of an insight into my brain on strep... </span><br />
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<span style="font-family: "verdana" , sans-serif;">i've worked hard in therapy to heal from that and to overcome the residual anxiety that lingers... and the resulting emotional fall out that comes from having your brain, body and life hijacked by multiple chronic, invisible illnesses. i've put in hours and hours and hours of extensive brain re-wiring, trauma work and many other methodologies of healing body, mind and soul - </span><span style="font-family: "verdana" , sans-serif;"><i>(there are several fundamental processes - as related to lyme - that i have struggled to integrate as well...but more details about that another day</i>) and they have all been valuable tools in my recovery </span><span style="font-family: "verdana" , sans-serif;">but no matter how hard i've worked at it, i've struggled with putting the pieces of myself back together and finding peace...until i started biking.</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiktEIt2zUpmTa3unbnC9gygGxkDYmdLikL0MifXHHSju1I2GsZI1nXHufC7tvRkIZsGzlutv6RvLYtniNUlaZopIRqTqZMtJAWGpKWCwchBzVyitnYC4V4somTY4VGGYl7ebMw8OwpXmLG/s1600/FullSizeRender+%25283%2529.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="398" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiktEIt2zUpmTa3unbnC9gygGxkDYmdLikL0MifXHHSju1I2GsZI1nXHufC7tvRkIZsGzlutv6RvLYtniNUlaZopIRqTqZMtJAWGpKWCwchBzVyitnYC4V4somTY4VGGYl7ebMw8OwpXmLG/s400/FullSizeRender+%25283%2529.jpg" width="400" /></a></div>
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<span style="font-family: "verdana" , sans-serif;">i started single-track trail riding just shortly after my strep diagnosis in spring 2014. when the hubster (<i>who as been riding for his entire life</i>) suggested we try downhill at <a href="http://www.skisilverstar.com/summer/home?location=CA" target="_blank">silver star bike park</a> in vernon, bc this past summer (2015), i was not so sure about that.<i style="font-weight: bold;"> </i>i googled it. ack.<i style="font-weight: bold;"> it looked pretty extreme and scary to me...and about the last thing i wanted to do was expose myself to any sort of fear stimulus. </i>after all, </span><span style="font-family: "verdana" , sans-serif;">i was recovering from another bout of strep throat that had caused a relapse of intense neuro-psych symptoms. i had already been on antibiotic treatment for a few weeks by that time which had brought the worst of the symptoms down to a dull roar but i was still contending with a higher than normal level of anxiety and intrusive, cycling thoughts. i really enjoyed single-track and knew it helped alleviate some of the chaos in my brain but downhill was a whole other world of biking. </span><span style="font-family: "verdana" , sans-serif;">somehow the thought of barreling down a mountain on 2 wheels didn't seem exactly like a calming activity but i sure as hek did NOT want to get left behind. i knew that would mean spending the day alone with my endless, cycling thoughts. nope. nada. not going to happen. </span><br />
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<b style="font-family: verdana, sans-serif;"><i>i figured being left on my own was scarier than anything any mountain could throw at me.</i></b><br />
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<tr><td class="tr-caption" style="text-align: center;">Up, up and away...on the chair lift at silver star</td></tr>
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<span style="font-family: "verdana" , sans-serif;">here's the bottom line:</span><br />
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<span style="font-family: "verdana" , sans-serif;">when your brain is on fire seeking relief over-rides everything...even the physical limitations that lyme holds over my body and the fear of fear itself can motivate you to try something you never in a million years would have tried before </span><b style="font-family: verdana, sans-serif;"><i>...and maybe that is the silver lining in all of this. after all, fear is what brought me to silver star mountain that day. and that day was a revolutionary, life-changing day for me and it</i></b><b style="font-family: verdana, sans-serif;"><i> also birthed in me an absolute passion for riding.</i></b><br />
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<span style="font-family: "verdana" , sans-serif;">you would think that barreling down a mountain as fast as i can go, riding over logs, dropping off of rocks, sling-shooting out of berms and getting airborne would contribute to anxiety but for me it does the opposite. </span><br />
<span style="font-family: "verdana" , sans-serif;"></span><span style="font-family: "verdana" , sans-serif;"></span><br />
<span style="font-family: "verdana" , sans-serif;"><b><i>riding is my ativan. it is the ONLY thing that relieves my anxiety.</i></b></span><br />
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<span style="font-family: "verdana" , sans-serif;">on that first downhill adventure i rode for 6 hours. i took jumps. i did drops. i rode blue. i rode black. i rode as fast as i could go. i hung on for dear life. i had unintentional dismounts. i even face planted. let's be honest - i looked ridiculous...but what i lacked in technique and skill, i made up for with loud enthusiasm.</span><br />
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<tr><td class="tr-caption" style="text-align: center;">My first downhill adventure. lol. <br />
i was not trying to look like a flying bandit - the bandana was to help keep the dust out of my face</td></tr>
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<span style="font-family: "verdana" , sans-serif;">i whooped. i hollered. <b><i>i laughed with unbridled joy after every.single.run.</i></b> just recalling it makes me giddy. my unadulterated enthusiasm totally embarrassed the hubster and sparky but i didn't care... </span><span style="font-family: "verdana" , sans-serif;">because i had no fear. no anxiety. no cycling thoughts. </span><span style="font-family: "verdana" , sans-serif;">all the noise in my head just ceased to be. i was free and that was intoxicating.</span><br />
<span style="font-family: "verdana" , sans-serif;"><b><i><br /></i></b></span>
<span style="font-family: "verdana" , sans-serif;"><b><i>i was fully present and fully free for the first time in a very long time. i felt strong. wild. free. brave. fierce. capable. independent. happy. bad-ass. i felt all the things i thought i no longer was. and that changed me.</i></b></span><br />
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<span style="font-family: "verdana" , sans-serif;"><b><i>i ride because riding brought</i></b></span><span style="font-family: "verdana" , sans-serif;"><b><i> me back to me.</i></b> </span><br />
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s.http://www.blogger.com/profile/02214787682053856588noreply@blogger.com1tag:blogger.com,1999:blog-1032680752522787900.post-53325380945784899222016-04-03T23:30:00.000-07:002016-04-04T11:14:29.827-07:00A TOUGH BREAK<div dir="ltr" style="text-align: left;" trbidi="on">
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<span style="font-family: "verdana" , sans-serif;">so this happened on saturday.</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEicF5VLby37vEq-E9TSxr2IiUwp-Atyb3xNFe_kvVsxTXdBv4f8Den2hc1H6BqFpiqmTLKLNS5Vtg0O6BUKKiVrB5FilZiyHLdlUhRCE8kPOM0oxO7f6HPThXyeFoEjLIUBTgklTloxMW7V/s1600/FullSizeRender+%252812%2529.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEicF5VLby37vEq-E9TSxr2IiUwp-Atyb3xNFe_kvVsxTXdBv4f8Den2hc1H6BqFpiqmTLKLNS5Vtg0O6BUKKiVrB5FilZiyHLdlUhRCE8kPOM0oxO7f6HPThXyeFoEjLIUBTgklTloxMW7V/s400/FullSizeRender+%252812%2529.jpg" width="400" /></a></div>
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<span style="font-family: "verdana" , sans-serif;">parker had a bit of a crash while mountain biking. his clavicle (collar bone) is broken and displaced. it is also seperated at the shoulder. he will be having surgery (most likely) on monday.</span><br />
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<span style="font-family: "verdana" , sans-serif;">my last update about our sparky boy (read <a href="http://ticksandtrust.blogspot.ca/2016/02/hope-is-what-we-crave.html" target="_blank">hope is what we crave</a>) was about how he was and had been very ill for the past 6 months. shortly after i posted that he had a change in treatment which resulted in a total 180 in his health. over the past 4 weeks he has experienced a rapid and radical improvement in all his symptoms... he had now been re-building strength, shooting hoops, riding his bike and had even been able to go to school several times. it felt like a miracle. we just hadn't yet talked about it with anyone outside of family because it was all so new and still felt tenuous. he was/has been improving BUT he was (is) still living with daily symptoms and day to day flares. and we (along with DR H) were still concerned that things could just as suddenly decline and he could head downhill again. we felt a little, okay actually a lot scared that the rug could be pulled out from under him at any moment.</span><br />
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<span style="font-family: "verdana" , sans-serif;"><br /></span><span style="font-family: "verdana" , sans-serif;">turns out the rug is his bike.</span><br />
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<span style="font-family: "verdana" , sans-serif;">the crash occurred in a bike park on the sunshine coast. the medics at the park were fantastic and super compassionate. he had to endure coming down the mountain - they could have put him on a stretcher - but he chose to walk down (with help) and then a long wait in local ER. he then had to endure a 90 min ferry ride and 45 min drive to hospital where we live. he was given a shot of toradol after the accident but until we arrived at our city hospital the day after the accident, he'd just been on tylenol and advil to manage the pain. needless to say, the last 24 hours have been intense & traumatic. but parker is tough as nails and extremely stoic. we are amazed by his strength and resiliency...and his humor. however, this is a really tough break on every front. appreciate if you could keep him in your thoughts and prayers.</span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiDOdDGSINX7LYTR7WBvZbhpKK6Q6teB3IqaHhD7F4d5JOK92zRoO7hXa4pZcNIDO5FwODfSXKQuaK1H7vUd_hhiiv178wFrvr0qnItGDuqfGsfrvBMazXVGYSunOHdyIhgCAAWWEi9X2pa/s1600/FullSizeRender+%252814%2529.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiDOdDGSINX7LYTR7WBvZbhpKK6Q6teB3IqaHhD7F4d5JOK92zRoO7hXa4pZcNIDO5FwODfSXKQuaK1H7vUd_hhiiv178wFrvr0qnItGDuqfGsfrvBMazXVGYSunOHdyIhgCAAWWEi9X2pa/s400/FullSizeRender+%252814%2529.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Waiting for ferry. <br />
He says the joint pain he experiences due to lyme is worse than the pain from his break.</td></tr>
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<span style="font-family: "verdana" , sans-serif;">i will be updating as i can.</span><br />
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s.http://www.blogger.com/profile/02214787682053856588noreply@blogger.com1tag:blogger.com,1999:blog-1032680752522787900.post-90101787805568312342016-03-31T20:27:00.002-07:002016-03-31T20:38:31.741-07:00DIY RIPS, WOUNDS & A ROSIE PERSPECTIVE<div dir="ltr" style="text-align: left;" trbidi="on">
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<span style="font-family: "verdana" , sans-serif;">i am always thinking. well, duh. maybe what i should say is that i am always writing in my head. yes. however, more often than not it takes a very long time for what it is written in my head to find its way cohesively to a published post. i follow a number of writers on IG and i am blown away by their ability to share their thoughts in written form on a daily basis. wow. just wow. at times i feel small and inept and frustrated by my sluggishness.</span><br />
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<span style="font-family: "verdana" , sans-serif;"><b><i>"too often we are ruled by everything that is wrong with us </i></b></span></div>
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<span style="font-family: "verdana" , sans-serif;"><b><i>as opposed to </i></b></span></div>
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<span style="font-family: "verdana" , sans-serif;"><b><i>everything that is right with us" </i></b></span></div>
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<span style="font-family: "verdana" , sans-serif; text-align: right;"><b><i> </i></b>~nick ortner</span></div>
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<span style="font-family: "verdana" , sans-serif;">this morning i sat down to work on my post about the LDI/LDA immunotherapy. i've been writing this dang thing now for a couple of weeks. it's coming along but i'm frustrated by the length of time it is taking me to write it. i thought i'd get it done today. that was my goal but i only had an hour to hammer away at it before my plans for the day - a lovely stroll with a friend in steveston - took me away from the laptop.</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgEiQ0HONa8JZkCZ2xoSWiBT0luujOL-fphbExvbWA3qufGRxdENe7PZXLccWqXMTSv9gSPqJFYz5mPCHn2rBb70cUyMN8JrKjePwDdsg3FcUT-C6rQTN97bs5KmwBSqCv39tCrE38stOHk/s1600/FullSizeRender+%25289%2529.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgEiQ0HONa8JZkCZ2xoSWiBT0luujOL-fphbExvbWA3qufGRxdENe7PZXLccWqXMTSv9gSPqJFYz5mPCHn2rBb70cUyMN8JrKjePwDdsg3FcUT-C6rQTN97bs5KmwBSqCv39tCrE38stOHk/s400/FullSizeRender+%25289%2529.jpg" width="400" /></a></div>
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<span style="font-family: "verdana" , sans-serif;">as i was driving to steveston - i was quite suddenly overwhelmed with emotion. first off, the gas light was on. this stressed me out exponentially. gas stations freak me out. social anxiety perk - plus i can never figure out how to work the stupid pump - and i almost always end up having an attendant yell at me over the station loudspeaker. plus i was running late - so i really didn't have time to stop for gas. (<i>oh good one - that like makes so much sense.</i>) </span><br />
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<span style="font-family: "verdana" , sans-serif;">anyhow, while all of that was going on in my head, out of the blue i was bowled over by an intense sense of gratitude to be alive - lyme, anxiety and all. <i>there i was driving by myself to meet a friend and go for a walk on a beautiful day. well, none of that is anything i take for granted. </i><b><i>to be able.</i></b> well, the intensity of those feelings just got me all bleary eyed (which was excellent because it made the gas light blurry and a bit less noticeable.)</span><br />
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<span style="font-family: "verdana" , sans-serif;">and then as i was driving along, this post just wrote itself. and since getting home (<i>and i filled up the gas tank like a boss on the way home</i>) my thoughts have made their way from my head to the screen.</span><br />
<span style="font-family: "verdana" , sans-serif;"><b><i><br /></i></b></span>
<span style="font-family: "verdana" , sans-serif;"><b><i>diy rips, wounds and a rosie perspective</i></b></span><br />
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<span style="font-family: "verdana" , sans-serif;">the gorgeous weather has me pulling out my thrifted faves from last spring.</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhlSm-JRdxEV9hrpxfiY2DZkER2Aar1Fsw5ZasRezBUWn7jt4C_YhnkjvFgwow6fEMeGmFLGkQZ0xTfM77QDoVGkjQI0WEvIr6cb6yIn2keESJCDWCX2LO_FNDNuvwMC1F_Y5gUSWXlE5Il/s1600/FullSizeRender+%25288%2529.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhlSm-JRdxEV9hrpxfiY2DZkER2Aar1Fsw5ZasRezBUWn7jt4C_YhnkjvFgwow6fEMeGmFLGkQZ0xTfM77QDoVGkjQI0WEvIr6cb6yIn2keESJCDWCX2LO_FNDNuvwMC1F_Y5gUSWXlE5Il/s400/FullSizeRender+%25288%2529.jpg" width="400" /></a></div>
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<span style="font-family: "verdana" , sans-serif;">the hubster says my thrifted shoes remind him of band-aids. smh. fashion mimics life. i burned my hand boiling water and sliced my finger tip whilst chopping onions this week. i really should not be allowed in a kitchen. given the balmy spring weather upon us and my recent mishaps in the kitchen it seemed fitting that i should wear my band-aid shoes today. after all, i like coordinating my outfits. the minor wear and tear on my ankle is left-overs i got earlier this week from a rip down a mountain biking trail called Dale's Trail on Mt Seymour. yes, i am able to mountain bike. it's incredible to be able to ride. it also helps me cope with my anxiety. my bike is my ativan. </span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjMoJoo0dWTAcDyFCxNhDQowIRTtBm8bc85pFs9EUZU7ewQMczDWuTTEzVvNCS92JjgiVKLgYOVMv8Q_VphnSQNtDBtnrQeBZkBh3vWIBibJCi9D9VJ7xJcmNb5SB-B7SgI2HmKgd2tqw93/s1600/FullSizeRender+%252811%2529.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="393" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjMoJoo0dWTAcDyFCxNhDQowIRTtBm8bc85pFs9EUZU7ewQMczDWuTTEzVvNCS92JjgiVKLgYOVMv8Q_VphnSQNtDBtnrQeBZkBh3vWIBibJCi9D9VJ7xJcmNb5SB-B7SgI2HmKgd2tqw93/s400/FullSizeRender+%252811%2529.jpg" width="400" /></a></div>
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<span style="font-family: "verdana" , sans-serif;"><b><i>to be able</i></b>...i am sitting here in my thrifted denim with my DIY rips, wounds and band-aids and just feeling overwhelmingly grateful to be able-bodied today. i have lived with chronic lyme disease for 10 years now. and spent many of those years bedridden and on daily IV treatment. my last big flare of lyme symptoms was a year ago and it put me flat on my back from january to march of last year. from where i sit today to where i was - even a year ago, 5 years ago, 10 years ago - is truly staggering. so today it feels incredible to be covered in band-aids from the wear and tear of life - all the way from the mundane things like cooking (<i>albeit, let's keep it real, i am able but not really able to cook</i>) to the extraordinary feat of shredding a black diamond run on my mountain bike. </span><br />
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<span style="font-family: "verdana" , sans-serif;">i have good days. and i still have bad days. but most days, i am able. more than able. for that i am wholeheartedly grateful. never give up. there is always hope.</span><br />
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<span style="font-family: "verdana" , sans-serif;">rosie hued specs - zenni optical. </span><br />
<span style="font-family: "verdana" , sans-serif;">rosie outlook - chronic life lessons</span><br />
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s.http://www.blogger.com/profile/02214787682053856588noreply@blogger.com0tag:blogger.com,1999:blog-1032680752522787900.post-52630476878674117312016-03-29T15:43:00.003-07:002016-03-29T15:43:20.342-07:00THE HAT STORY<div dir="ltr" style="text-align: left;" trbidi="on">
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<span style="font-family: "verdana" , sans-serif;">hats. specs. thrift. these are a few of my favorite things! (<i>bikes too, but that's a whole other story and crows! and coffee!</i>)</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEivQFvzIBhBBhwEg96bhO-KIOTn3BZ8mURz7tkQ5uknFWp3lPPiAP54UqSUjc4eKyOFtJ-GDR-ROg3kqoEXagnmWS1D8MxHfFY_1XBryR-W7Kcb2Fk4RctkcVCy_-g35tqziX2Ko99UtZnx/s1600/IMG_4093.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEivQFvzIBhBBhwEg96bhO-KIOTn3BZ8mURz7tkQ5uknFWp3lPPiAP54UqSUjc4eKyOFtJ-GDR-ROg3kqoEXagnmWS1D8MxHfFY_1XBryR-W7Kcb2Fk4RctkcVCy_-g35tqziX2Ko99UtZnx/s400/IMG_4093.JPG" width="397" /></a></div>
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<span style="font-family: "verdana" , sans-serif;">if you've been a blog reader for awhile now, you probably know of my love for finding bargains at retail stores - my long standing faves being ross dress-for-less and target. even though most of my blog is about our family's journey with lyme, i've been known to write about some of my ross shopping adventures. <i>(read about <a href="http://ticksandtrust.blogspot.ca/2012/04/travelling-pants.html" target="_blank">my travelling pants adventure here</a>)</i>. despite my honed bargain shopping skills even these stores now exceed our tight budget... so for the past 2 years, i have tried to exclusively shop at thrift stores. no more ross or target for me! (mind blowing, i know!) </span><br />
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<span style="font-family: "verdana" , sans-serif;">there are a few retail exceptions though... </span><span style="font-family: "verdana" , sans-serif;">Zenni Optical for my specs, Forever 21 & Ardene for funky jewelry...and then there is this hat i recently bought from the hudson bay company. </span><span style="font-family: "verdana" , sans-serif;">however, it was sort of a thrifty purchase as</span><span style="font-family: "verdana" , sans-serif;"> i did use a gift certificate to help purchase it. </span><span style="font-family: "verdana" , sans-serif;">i found the gift certificate in a dresser i inherited from my nana (grandma) many years ago!</span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj62_cX0W_kBx0rjtdj3alQ04ppyzUtmFZ6Ukra7Rbb35skfj_g5CZsarNkf6SuHWxN9tlPWfkjy0u7ee0kA2hA8Gmpj2cN29W3vp9wx13x9PQESXlJQXtE8EczcGTQEdeZOOTeYZs8yM0n/s1600/FullSizeRender+%25286%2529.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj62_cX0W_kBx0rjtdj3alQ04ppyzUtmFZ6Ukra7Rbb35skfj_g5CZsarNkf6SuHWxN9tlPWfkjy0u7ee0kA2hA8Gmpj2cN29W3vp9wx13x9PQESXlJQXtE8EczcGTQEdeZOOTeYZs8yM0n/s400/FullSizeRender+%25286%2529.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">my nana's dresser</td></tr>
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<span style="font-family: "verdana" , sans-serif;"> </span><span style="font-family: "verdana" , sans-serif;">the gift certificate was from 1995... which, in my daughter's opinion, </span><span style="font-family: "verdana" , sans-serif;">makes it so old it's practically vintage. lol. indeed, it was so old that i was actually worried about trying to purchase the hat with it. in fact, it took me nearly two weeks from the time i saw the hat in the store until i went back and purchased it. </span></div>
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<span style="font-family: "verdana" , sans-serif;">i currently live with a social anxiety disorder that has been triggered by a post-strep autoimmune illness. (<a href="http://ticksandtrust.blogspot.ca/2014/11/this-is-my-brave.html" target="_blank">read "this is my brave" here</a>), so going into a store and making a purchase can produce anxiety for me. add to that, a vintage gift certificate that may or may not still be valid and i was worried i'd get arrested or questioned - like they'd somehow think i was printing fake vintage gift certificates! i know it's so irrational but these are the types of thoughts that were running through my mind.</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span><span style="font-family: "verdana" , sans-serif;">yet, the hat was calling my name! i was imagining all the looks i could create with it and the bonus of not having to spend time and energy on styling my hair, well, the allure of that finally trumped my quirky anxiety. </span><br />
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<span style="font-family: "verdana" , sans-serif;">off i went to the bay. before going though, i took the time to do my hair and create a look that i hoped made me look trustworthy and un-scammer like. when i finally showed up at the cash register, i nervously presented my gift certificate and breathlessly murmured, <b style="font-style: italic;">"i have this gift certificate. i have noooooo </b>(insert high pitched squeak)<b style="font-style: italic;"> idea if its still valid."</b></span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiVabhmarxBwXtwgAW-gaYnamHesJ8kKiXjyFYO4TjA119dKkicPOi3c3KbXmUlv2LfNsldYEWfclly97Vu1iBF1ICXX3cD-O9AAdLEf3UqJ1NY8PI8JHkEpzksG0pbwnqB5TVs1xhy0nHF/s1600/FullSizeRender+%25285%2529.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="185" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiVabhmarxBwXtwgAW-gaYnamHesJ8kKiXjyFYO4TjA119dKkicPOi3c3KbXmUlv2LfNsldYEWfclly97Vu1iBF1ICXX3cD-O9AAdLEf3UqJ1NY8PI8JHkEpzksG0pbwnqB5TVs1xhy0nHF/s400/FullSizeRender+%25285%2529.jpg" width="400" /></a></div>
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<span style="font-family: "verdana" , sans-serif;">the sales lady took it from my shaking hand. she lifted it to the light and inspected it. then she asked the clerk next to her if she'd ever seen anything like it.</span><br />
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<span style="font-family: "verdana" , sans-serif;">i tried my best to look nonchalant and legit. </span><br />
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<span style="font-family: "verdana" , sans-serif;">then the other clerk said, <i><b>"oh i've never seen anything like that. you need to call management and have them come take a look."</b></i></span><br />
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<span style="font-family: "verdana" , sans-serif;">i nearly vomited.</span><br />
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<span style="font-family: "verdana" , sans-serif;">5 heart stopping minutes passed before the manager appeared. i could feel my heart pounding in my throat as i saw her approach. the first sales clerk waved the certificate under her nose. </span><br />
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<span style="font-family: "verdana" , sans-serif;"><i>"what do you make of this? have you ever seen one of these?"</i></span></b><br />
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<span style="font-family: "verdana" , sans-serif;">the manager grabbed the certificate and turned it over and over and over in her hands. then she held it up to the light.</span><br />
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<span style="font-family: "verdana" , sans-serif;">i suddenly felt woozy. fearing i may topple over, i grabbed at the counter to steady myself. in doing so, i dropped my purse which clattered noisily to the floor. </span><span style="font-family: "verdana" , sans-serif;">the manager's eyeballs left the certificate and gave me and the purse at my feet an appraising once over. then she returned her gaze to my face with one eyebrow raised. i stopped breathing. i knew with absolute certainty she was sizing me up as a counterfeiter.</span><br />
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<span style="font-family: "verdana" , sans-serif;">then she exclaimed,<b> </b></span><span style="font-family: "verdana" , sans-serif;"><b>"<i>oh wow! i haven't see one of these in 20 YEARS!</i>"</b></span><br />
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<span style="font-family: "verdana" , sans-serif;">it took me a full minute to start breathing again. </span><br />
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<span style="font-family: "verdana" , sans-serif;">then she called over another manager. and they began excitedly exclaiming over my gift certificate and they wanted to hear where on earth i'd found it! so i started to tell them my story. before i knew it, there was a total of 4 sales clerks and two elderly customers milling around and listening to my story. then suddenly everyone was reminiscing about the good old glory days of the hudson bay company.</span><br />
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<span style="font-family: "verdana" , sans-serif;">oh my word. it was a total hoot but by </span><span style="font-family: "verdana" , sans-serif;">the end of it all, i was more than happy to pull that hat on low over my brows and flee the store. no more retail for me. </span><br />
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<span style="font-family: "verdana" , sans-serif;">there's a bit more i'd like to add to this little hat story...as my love of hats has been </span><span style="font-family: "verdana" , sans-serif;">born out of suffering. i wasn't a hat person until i became profoundly </span><span style="font-family: "verdana" , sans-serif;">ill with neurological Lyme Disease 10 years ago.</span></div>
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<span style="font-family: "verdana" , sans-serif;">during my sickest years, hats became a way for me to still feel styled </span><span style="font-family: "verdana" , sans-serif;">& put together when my body was falling apart. being someone who finds </span><span style="font-family: "verdana" , sans-serif;">creative inspiration & joy from putting looks together this was </span><span style="font-family: "verdana" , sans-serif;">important to me. in essence, hats helped me feel like me when the </span><span style="font-family: "verdana" , sans-serif;">symptoms of Chronic Lyme left me with a body that felt foreign, </span><span style="font-family: "verdana" , sans-serif;">uncomfortable & unrecognizable.</span></div>
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<span style="font-family: "verdana" , sans-serif;">more thoughts on hats, thrifting, chronic illness (& biking) coming to my blog soon. as well as an update about the LDI/LDA Immunotherapy that sparky and i have been undergoing for almost a year now. <i>(i've had a number of inquiries about this specific treatment and i'm sorry the update is taking so long!) </i></span><br />
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<span style="font-family: "verdana" , sans-serif;">i'm beginning to write again and it feels good. really good. yet, </span><span style="font-family: "verdana" , sans-serif;">as good as it feels to be able to start blogging again, i have to admit, i am still having FB anxiety. psshtt! this social anxiety thing is a real beast to contend with but i am just allowing myself to be okay with that. having never been anxiety prone, it's weird to suddenly live with it but that is just the way it is right now. i am wanting to be as real about it as i can and not not feel silly or less than or beat myself up over it. that's just where things are at for me. </span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span><span style="font-family: "verdana" , sans-serif;">FB weirdness aside, i have recently activated both mine and our dog harrison's instagram accounts again. <i>(as if posting as a dog isn't weird or anything.)</i> i am comfortable hanging out on there and am enjoying creating mini posts. i don't always feel that what i post there is blog 'worthy' so please feel free to find me on instagram under @ticksandtrust. and the dog can be found @worldaccordingtoharrison</span><br />
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<span style="font-family: "verdana" , sans-serif;">thanks for reading my little hat story!</span><br />
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s.http://www.blogger.com/profile/02214787682053856588noreply@blogger.com1tag:blogger.com,1999:blog-1032680752522787900.post-80887222677069111512016-02-29T22:32:00.001-08:002016-03-02T17:24:17.026-08:00HOPE IS WHAT WE CRAVE<div dir="ltr" style="text-align: left;" trbidi="on">
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<span style="font-family: "verdana" , sans-serif; text-align: left;">so i've been MIA on social media and my blog for a long while now. multiple reasons abound for my sudden and prolonged disappearance...</span></div>
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<span style="font-family: "verdana" , sans-serif;">i don't have that many words to describe the past 6 months - well, not appropriate words anyway. </span><br />
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<span style="font-family: "verdana" , sans-serif;">at the beginning of august, i got strep throat which triggered a pandas relapse. this was my third relapse with this illness since my diagnosis in spring 2014 (<i>read about that <a href="http://ticksandtrust.blogspot.ca/2014/11/this-is-my-brave.html" target="_blank">here</a></i>). i am very fortunate that my symptoms respond to treatment albeit this time around it took aggressive and very high dose antibiotic treatment from mid-august until end of october to restore proper brain function. the treatment was very, very hard on my body. i was still recovering and dealing with some mild neurological deficits when we embarked on our trip to seek in-patient treatment for Parker at the clinic in Kansas. </span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span><span style="font-family: "verdana" , sans-serif;">for those not familiar with pandas - basically, it is an auto-immune illness caused by exposure to group a streptococcus infection that causes the antibodies in your body to attack specific regions of your brain and central nervous system. this can cause very severe neuro-psychiatric symptoms. understatement.(</span><span style="font-family: "verdana" , sans-serif;">read more about it <a href="https://www.nimh.nih.gov/health/publications/pandas/index.shtml" target="_blank">here</a> or <a href="http://pandasnetwork.org/understandingpandaspans/about-pandaspans/whatispandas/" target="_blank">here</a>)</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span><span style="font-family: "verdana" , sans-serif;"><i>in plain english, pandas is a mindf*ck.</i><b><i> and that is putting it mildly.</i></b></span><br />
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<span style="font-family: "verdana" , sans-serif;">but more about THAT another day. </span><br />
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<span style="font-family: "verdana" , sans-serif;">the same week that my pandas flared, we had uninvited, unwanted house guests arrive.</span><br />
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<span style="font-family: "verdana" , sans-serif;">6 months later, they are still here. along with most of their relatives.</span><br />
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<span style="font-family: "verdana" , sans-serif;">they are not welcome. they are not wanted. and we have nearly lost our minds trying everything and anything to get rid of them. </span><br />
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<span style="font-family: "verdana" , sans-serif;">their aggressive invasion of our home has been a complete and total sh*tstorm if you catch my drift. since december, i spend (on average) 3 to 4 hours PER DAY cleaning up after them. no lie. </span><br />
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<span style="font-family: "verdana" , sans-serif;">one day i may blog about it. in fact, the story-teller in me is surviving their hostile take over of our home by telling myself, <i>"oh shan, this is going to make a great blog story." </i>and truly it will - after all, the tales i can tell will leave you in flabbergasted disbelief at their brazen persistence.</span><br />
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<span style="font-family: "verdana" , sans-serif;">however, the other part of me, the introverted, sensitive, idealistic momster who is stumbling raw and broken through the darkest of days...just wants to keep the storyteller silent. because so much of what has transpired in the past 6 months is just beyond words. too hard. too raw. too painful. <b><i>and none of it makes sense</i></b>. i am angry, bitter, grieved and beyond heartbroken. and</span><span style="font-family: "verdana" , sans-serif;"> the last thing i want to do is put the brutal, ugly, hard agony side of suffering out there - unless i have some sort of positive perspective to wrap it up with. after all, </span><span style="font-family: "verdana" , sans-serif;">i write because i want my suffering, our family's suffering, to mean something. to be bigger than us. to help someone. to encourage. and mostly, to inspire faith and hope in the midst of trauma, suffering and pain. </span><br />
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<span style="font-family: "verdana" , sans-serif;">but today, i write in spite of the fact that i have NONE of that to bring to the table. NOTHING but my brokenness and the desolate desperation of our story. these are dark days, friends. so very, very dark...the kind of bewildering, scary, heartbreaking, helpless, hopeless, perplexing, WTF-is-going-on sort of dark days.</span><br />
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<span style="font-family: "verdana" , sans-serif;"><b><i>which leads me to the hardest part of this post to write about... an update on our boy sparky.</i></b></span><br />
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<span style="font-family: "verdana" , sans-serif;">it is very difficult and painful to talk/write about Parker's situation.</span><br />
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<span style="font-family: "verdana" , sans-serif;">our emotions are intense and somehow neither the hubster nor i have had it in us to put any of it 'out there'. yet, <b><i>we want you to know that we have <u>deep gratitude </u>for the many, many people whose unbelievable generosity made Parker's $20,000 trip to Kansas possible.</i></b> we know that each and every person who donated and/or prayed for this trip is also deeply emotionally invested in the recovery of our boy.</span><br />
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<span style="font-family: "verdana" , sans-serif;">we get that.</span><br />
<span style="font-family: "verdana" , sans-serif;"><b><i>we so totally and humbly get that.</i></b></span><br />
<span style="font-family: "verdana" , sans-serif;">in part, it's why it so difficult to share the outcome of our trip with you all as it is not what any of us earnestly hoped or prayed for. but it has sat heavy on my heart that we have been remiss in personally extending our gratitude and also letting people know what is going on. </span><br />
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<span style="font-family: "verdana" , sans-serif;">we embarked upon this trip with our hopes held high. after all, this was our miracle trip! <i>how could it <b>not</b> work?</i> really? especially with all that went in to getting us there! furthermore, the miraculous stories of recovery experienced at this clinic were not just internet hear-say to us - we personally KNOW people that have had IMMEDIATE and LASTING relief from their symptoms (specifically pain) while at this clinic. so we KNEW it could happen.</span><br />
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<span style="font-family: "verdana" , sans-serif;">the pain relief aspect of healing was our primary reason for choosing this specific clinic. parker has suffered from unrelenting and intractable joint pain for 7 years now (<i>even during his brief remission, he was never totally pain free</i>)</span><br />
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<span style="font-family: "verdana" , sans-serif;">we prayed and hoped and believed that he would experience a notable shift in his symptoms and a reduction in his pain during his 2 weeks at the facility. we knew it was possible however, we also knew this was not a totally realistic expectation to have. this was what we considered a <i>'best case miracle scenario</i>'.</span><br />
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<span style="font-family: "verdana" , sans-serif;">and the worst case scenario?</span><br />
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<span style="font-family: "verdana" , sans-serif;">that there would be no notable changes during those 2 weeks in the clinic but that healing would come in the months after as he continued on the various remedies and therapies at home.</span><br />
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</i><span style="font-family: "verdana" , sans-serif;"><i>naturally, the best case scenario is what we hoped and believed for but the worst case is what we mentally prepared for.</i> after all, it was the most realistic outcome to expect. we get that. he has been sick for a very long time so it is not realistic to expect an overnight recovery.</span><br />
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<span style="font-family: "verdana" , sans-serif;"><b><i>NEVER EVER IN OUR WILDEST FREAKING NIGHTMARES DID WE FOR A SINGLE MOMENT EVEN CONCEIVE OF THE POSSIBILITY THAT HE WOULD GET SICKER.</i></b></span></div>
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<span style="font-family: "verdana" , sans-serif;">but that is exactly what happened.</span><br />
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<span style="font-family: "verdana" , sans-serif;">there were no notable changes (good or bad) in any of his symptoms until his second to last day of treatment. and then suddenly and abruptly, his symptoms flared exponentially and all hell broke loose.</span><br />
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<span style="font-family: "verdana" , sans-serif;"><b><i>let me be very clear - this was NOT at all an expected outcome of treatment there.</i></b> i know this may be a bit confusing for folks to understand since the traditional standard of lyme treatment is that you <i><u>do get worse</u></i> (eg herxing) before getting better. however, the whole crux of treatment at this clinic and the principles of biological medicine that is practiced there is that you <b><u><i>DO NOT </i></u></b>have to get worse before getting better. that being said, one also has to say that a flare of symptoms can occur even if the physician is striving to avoid flaring a patient.</span><span style="font-family: "verdana" , sans-serif;"> (<i>a bit confusing i know. sorry. i can't figure out how to explain it really.</i>)</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span><span style="font-family: "verdana" , sans-serif;">parker's symptoms flared so dramatically that i didn't think we should leave with him in that condition. i asked his doctor if money were not a barrier, would he be suggesting that parker stay for another week of treatment but his doctor felt that his worsening condition was just a minor set back. he was very hopeful and optimistic that this was just a temporary flare that parker would bounce back from within a few days.</span><br />
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<span style="font-family: "verdana" , sans-serif;">so we left kansas with a very sick kid who was more disabled and in more pain then when he had arrived. we were in shock...yet we clung to the hope that we had just hit a speed bump on his road to recovery and soon we'd see improvement. after all, how could this<b><i> not</i></b> work? <i>this was our miracle trip.</i></span><br />
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<span style="font-family: "verdana" , sans-serif;">in the weeks following the trip, parker continued on all the remedies prescribed to him at the clinic. </span><br />
<span style="font-family: "verdana" , sans-serif;">yet, he continued to deteriorate at an alarming rate. </span><br />
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<span style="font-family: "verdana" , sans-serif;">by november, he had lost 20lbs. and the primary symptoms he has been living with since his relapse in jan 2015 increasingly intensified.(severe joint pain, difficulty weight-bearing/mobility issues, insomnia, heat intolerance, facial flushing, nausea and intense noise/light sensitivities) </span><br />
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<span style="font-family: "verdana" , sans-serif;"><b><i>it was very clear that this was no temporary setback or speed bump.</i></b></span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span><span style="font-family: "verdana" , sans-serif;">his downward spiral certainly caught everyone off guard and stumped his doctor. we spoke with his kansas doctor who postulated that parker's infections were probably too severe to respond to their remedies alone. he told us that the clinic does not generally recommend antibiotics - except in very rare cases.</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span><span style="font-family: "verdana" , sans-serif;">he believed parker's condition fit this rare exception. </span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span><span style="font-family: "verdana" , sans-serif;">so his kansas doctor and his california doctor (DR H) had a phone conference and put together a treatment plan. additional testing ordered by DR H revealed that parker had a very severe staph infection. </span><span style="font-family: "verdana" , sans-serif;">aggressive antibiotic treatment for the staph was started immediately.</span><br />
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<span style="font-family: "verdana" , sans-serif;">in our numb state, we continued to cling to the hope that once the staph was treated, he would begin to improve. after all, we now had two of the most brilliant doctors working on his case. he HAD to get better. <i><u>he just had too.</u></i> </span><br />
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<span style="font-family: "verdana" , sans-serif;"><b>but he did not.</b></span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span><span style="font-family: "verdana" , sans-serif;">some symptoms (primarily the facial flushing. rashes and headaches) responded to the antibiotics for his staph infection but his other symptoms continued to worsen. in mid-december, he required testing for a condition called KPU. in order to prep for the test, he had to stop all his remedies from the clinic for several weeks. his test was negative. that was a big relief. the other relief was that his weight stabilized during the few weeks he was off his remedies. h</span><span style="font-family: "verdana" , sans-serif;">e didn't gain back any of the 20lbs he had lost (and still has not) but he stopped losing weight. this was significant because the weight loss and resulting muscle wasting was alarming. he was very frail. while he was off the remedies, he did not have any improvements in his other symptoms but at the same time neither did he get worse - he just kinda settled into this precarious state illness. we did not want to upset that balance. therefore, the decision was made to not resume any of the remedies from kansas. </span><br />
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<span style="font-family: "verdana" , sans-serif;"><i>this was a very tough call to make for so many reasons. </i> </span><br />
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<span style="font-family: "verdana" , sans-serif;">we do not question the integrity of this clinic and we know the medicine they practice there is powerful. during the 2 weeks we were there, we met many people that were experiencing healing. it just did not happen for parker. and that is horrifying and hard and makes no sense. </span><span style="font-family: "verdana" , sans-serif;"><b><i>we had/have no idea whether or not the weight loss or his overall deterioration was triggered by the remedies </i></b>(<i>there are so many co-morbid factors to could play a role - too complex for me to get into</i>). </span><span style="font-family: "verdana" , sans-serif;">we hope that one day those medicines will play a role in his healing. it is just too upsetting to think that all of it was for nothing. but </span><span style="font-family: "verdana" , sans-serif;">we simply do not know at this time. </span><br />
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<b style="font-family: verdana, sans-serif;"><i>honestly, there are more questions than answers. </i></b><br />
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<span style="font-family: "verdana" , sans-serif;">that is where we are today. </span><br />
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<span style="font-family: "verdana" , sans-serif;">we have literally spent the last several months fighting for parker's life. trying to figure out what went wrong and what is going on. </span><span style="font-family: "verdana" , sans-serif;">he has undergone numerous therapies and new treatments and even been seen by new doctors in the past several months. all to no avail. </span><span style="font-family: "verdana" , sans-serif;">he is back under the full time care of DR H (california doctor). we are so grateful that DR H has not given up on parker. </span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi1MmsFgPxoWc15iIodXTEE0OigOt6RNpJfLEC_xhQ9hj3w-UAM2QqhXakb3xsQtZaupYQ7Hdvxxo_WMI_rQhYOV8QgLQDJcH3XXjwzDhLqP9XElWJiihNkkvWAo9TrpZQff5zTJtCIjLVw/s1600/FullSizeRender+%25282%2529.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="201" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi1MmsFgPxoWc15iIodXTEE0OigOt6RNpJfLEC_xhQ9hj3w-UAM2QqhXakb3xsQtZaupYQ7Hdvxxo_WMI_rQhYOV8QgLQDJcH3XXjwzDhLqP9XElWJiihNkkvWAo9TrpZQff5zTJtCIjLVw/s400/FullSizeRender+%25282%2529.jpg" width="400" /></a></div>
<span style="font-family: "verdana" , sans-serif;"><br /></span><span style="font-family: "verdana" , sans-serif;">his level of disability is severe and alarming... in many ways, we are all still in shock...our family is deeply grieved and beyond heartbroken by the state that he is in. we are scared...we are sad...we are desperate....we feel helpless but we will NOT give up. we are pressing on, researching treatment options and fighting for parker. </span><br />
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<span style="font-family: "verdana" , sans-serif;">i don't think any one of us can even imagine the depths of parker's </span><span style="font-family: "verdana" , sans-serif;">despair and hopelessness. we are amazed by his resilience and the fight he still has within him to keep on trying any and every new treatment thrown his way yet we fear...how much more can he take before he gives up? </span><br />
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<span style="font-family: "verdana" , sans-serif;">we are so grateful for parker's school therapist/counselor who has been coming to visit him in our home weekly for the past several months. <b><i>thank you pete for showing up and being parker's person. there are no words to express how much you mean to us. </i></b></span><br />
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<span style="font-family: "verdana" , sans-serif;">i will be breaking my facebook hiatus in order to only publish this post - </span><span style="font-family: "verdana" , sans-serif;">i have not accessed FB or messenger since august and at this time, i am choosing to remain inactive. i am surviving and that is part of my survival. as much as i love the community of friends i have there, i just can't do FB. i can't do any of it - the advocacy part or the socializing part...or even the fun, silly part of it. </span><br />
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<span style="font-family: "verdana" , sans-serif;">but that being said, we do need people to reach out to us and let us know we are not alone and not forgotten. if you would like to, please drop us a line here on my blog or at sngoertzen@gmail.com.</span><br />
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<i style="font-family: 'Times New Roman';"><span style="font-family: "verdana" , sans-serif;"><b>please know that we have deep gratitude for your support and donations. </b></span></i><i style="font-family: 'Times New Roman';"><span style="font-family: "verdana" , sans-serif;"><b>thank you for standing with us and loving our boy. </b></span></i><i style="font-family: 'Times New Roman';"><span style="font-family: "verdana" , sans-serif;"><b>we are humbled.</b></span></i></div>
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<span style="font-family: "verdana" , sans-serif;"><i>please understand that we may not respond to emails. we are tired.</i></span><br />
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<span style="font-family: "verdana" , sans-serif;">please understand that we <u>cannot </u>be more specific or answer more questions about parker right now. it is just too painful to rehash. </span></i><span style="font-family: "verdana" , sans-serif;">what i have written here will be all that i say for now. <i><b>it is everything i can possibly put out there without coming completely undone.</b></i></span><br />
<i><span style="font-family: "verdana" , sans-serif;"><br /></span>
<span style="font-family: "verdana" , sans-serif;">please understand that we <b><u>DO NOT</u></b> wish to be inundated with the latest miracle cure for lyme. trust me - i am a research ninja - chances are i've already heard about, researched it and probably tried it.</span></i><br />
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<span style="font-family: "verdana" , sans-serif;"><b><u>BUT PLEASE FEEL FREE TO:</u></b></span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span>
<span style="font-family: "verdana" , sans-serif;">tell us a funny story.</span><br />
<span style="font-family: "verdana" , sans-serif;">tell us you love us.</span><br />
<span style="font-family: "verdana" , sans-serif;">tell us we are not forgotten.</span><br />
<span style="font-family: "verdana" , sans-serif;">bring us donuts.</span><br />
<span style="font-family: "verdana" , sans-serif;">bring us coffee.</span><br />
<span style="font-family: "verdana" , sans-serif;">and</span><br />
<b style="font-family: verdana, sans-serif;"><i>if you have a cat that is a <u>really good mouser</u> then <u>please bring us your cat.</u></i></b><br />
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<span style="font-family: "verdana" , sans-serif;"><i><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj2eGhCIQ02aD_1cLUqn3Ic4KJfVAC72k8jOQGuQix2f4cRTlwSorhE0RdRFr9vMH7K1bTfdqZCSS4_nxDez2DZWxrgJjrZUpEHlMNaXLQzncppf9bGsjGQKivKu6FzhhC8ZACObzpFUXQJ/s1600/IMG_9287.JPG" imageanchor="1" style="font-family: 'Times New Roman'; font-style: normal; margin-left: 1em; margin-right: 1em; text-align: center;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj2eGhCIQ02aD_1cLUqn3Ic4KJfVAC72k8jOQGuQix2f4cRTlwSorhE0RdRFr9vMH7K1bTfdqZCSS4_nxDez2DZWxrgJjrZUpEHlMNaXLQzncppf9bGsjGQKivKu6FzhhC8ZACObzpFUXQJ/s400/IMG_9287.JPG" width="400" /></a></i></span></div>
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<span style="font-family: "verdana" , sans-serif;">hope sleeps without me</span></div>
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<span style="font-family: "verdana" , sans-serif;">sweet dreams surround me</span></div>
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<span style="font-family: "verdana" , sans-serif;">but i'm left out</span></div>
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<span style="font-family: "verdana" , sans-serif;">i need a reason to believe</span></div>
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<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
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<span style="font-family: "verdana" , sans-serif;">these rooms are dark now</span></div>
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<span style="font-family: "verdana" , sans-serif;">these halls are hollow</span></div>
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<span style="font-family: "verdana" , sans-serif;">and so am i</span></div>
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<span style="font-family: "verdana" , sans-serif;">it's hard to feel now</span><br />
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<span style="font-family: "verdana" , sans-serif;"><span style="font-family: "verdana" , sans-serif;">i won't turn to dust now</span></span></div>
<span style="font-family: "verdana" , sans-serif;">
<div style="font-family: 'Times New Roman';">
<span style="font-family: "verdana" , sans-serif;">let these tears rust now</span></div>
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<span style="font-family: "verdana" , sans-serif;">on my face</span></div>
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<span style="font-family: "verdana" , sans-serif;">give me the spark now</span></div>
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<span style="font-family: "verdana" , sans-serif;">to believe, to see</span></div>
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<span style="font-family: "verdana" , sans-serif;">to live, to die, to lose, to care</span></div>
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<span style="font-family: "verdana" , sans-serif;">to rise above, to love again</span><br />
<span style="font-family: "verdana" , sans-serif;">i need a drop of grace</span><br />
<span style="font-family: "verdana" , sans-serif;">to carry me today</span></div>
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<span style="font-family: "verdana" , sans-serif;"><b><i>hope is what we crave & </i></b></span><b style="font-family: verdana, sans-serif;"><i>and that will never change</i></b></div>
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<span style="font-family: "verdana" , sans-serif; font-size: xx-small;"> ~ lyrics by for king & country</span></div>
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<span style="font-family: "verdana" , sans-serif;"><i><span style="font-family: "verdana" , sans-serif;"><i><br /></i></span></i></span>
<span style="font-family: "verdana" , sans-serif;"><i>ps</i></span><br />
<i><span style="font-family: "verdana" , sans-serif;">special thanks to my friend CP who has been an exceptional sounding board and brainstormer...especially over the last 6 months. thank you for being my person. i am forever grateful for your friendship & support.</span>
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s.http://www.blogger.com/profile/02214787682053856588noreply@blogger.com7tag:blogger.com,1999:blog-1032680752522787900.post-79871343022049030812015-08-04T10:26:00.000-07:002015-08-07T10:33:06.745-07:00HOLA FROM ENSENADA<div dir="ltr" style="text-align: left;" trbidi="on">
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<span style="font-family: Verdana, sans-serif;">The Hubster, my girl and the rest of the Project Serve Mexico Team (#PSMEX15) are in Mexico. Avery wrote a blog piece about the trip thus far (they've been gone 6 days already!). There is an excerpt from her blog piece below...but please visit </span><span style="font-family: Verdana, sans-serif;">the <a href="https://www.youthunlimited.com/blog/" target="_blank">Youth Unlimited Blog</a> </span><span style="font-family: Verdana, sans-serif;">or </span><span style="font-family: Verdana, sans-serif;">their FB Page - </span><a href="https://www.facebook.com/GVYFCYouthUnlimited?fref=ts" style="font-family: Verdana, sans-serif;" target="_blank">"Youth Unlimited (Greater Vancouver)"</a><span style="font-family: Verdana, sans-serif;"> to read the whole post and see pics of the team. The team will be updating through out their trip so make sure to check it daily!</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjctIErzR3NgCZlJmC382xVsKoRGGR__ldEodBOfmwuZypG_v5UbgEzoTeToaMThJyZxDHro4tnFmlNLoO7i0mSigjh8E_F0pMsEmK-JirJZZujmS3YfStK_3bNpAsD6QHMUqiWokQiVak0/s1600/HOLA.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjctIErzR3NgCZlJmC382xVsKoRGGR__ldEodBOfmwuZypG_v5UbgEzoTeToaMThJyZxDHro4tnFmlNLoO7i0mSigjh8E_F0pMsEmK-JirJZZujmS3YfStK_3bNpAsD6QHMUqiWokQiVak0/s400/HOLA.jpg" width="400" /></a></div>
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<span style="font-family: Verdana, sans-serif;">And it'd be super rad if you "liked" or dropped them a little "hello" on either site. I know the team would appreciate hearing from you! </span><br />
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<span style="font-family: Verdana, sans-serif;"><a href="https://www.youthunlimited.com/project-serve-mexico-15-blog-2-from-avery/" target="_blank">PSMEX 15 BLOG EXCERPT: </a></span><br />
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<span style="font-family: Verdana, sans-serif;"><i>"The trip has been eventful thus far, and will continue to be for the next nine days to be sure! Our team is learning more and more how to put the needs of others before ourselves and have servants’ hearts in ways that we may have not ever imagined. The Bible tells us that “where your treasure is, there your heart will be also.” And it is a privilege to be able to serve here wholeheartedly in this special place with so many special people." </i></span></div>
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<span style="font-family: Verdana, sans-serif;"><i>~Avery Goertzen</i></span></div>
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<span style="font-family: Verdana, sans-serif;"><a href="https://www.youthunlimited.com/project-serve-mexico-15-blog-2-from-avery/" target="_blank"><b><i>Click Here to read full post and see pictures</i></b></a></span></div>
s.http://www.blogger.com/profile/02214787682053856588noreply@blogger.com1tag:blogger.com,1999:blog-1032680752522787900.post-12023671790663676182015-07-31T17:09:00.000-07:002015-07-31T17:09:54.498-07:00ADIOS AMIGOS<div dir="ltr" style="text-align: left;" trbidi="on">
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<span style="font-family: Verdana, sans-serif;">the hubster and my girl left for mexico on wednesday (july 29).</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiUqjgZEXKW3zvH3tJ5yhSdt3MMf-kFb6l8EAT1ELBnpE418_NTpDkfI6fWaeF-wRhBwbec3d5AmYZxeQiOe24DqOObssNOOaJv38aVYzafuc7xkreoVBLXPla9GX4j6Dt8m5XBJAJ0yMoU/s1600/hubsterandmygirl.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiUqjgZEXKW3zvH3tJ5yhSdt3MMf-kFb6l8EAT1ELBnpE418_NTpDkfI6fWaeF-wRhBwbec3d5AmYZxeQiOe24DqOObssNOOaJv38aVYzafuc7xkreoVBLXPla9GX4j6Dt8m5XBJAJ0yMoU/s400/hubsterandmygirl.jpg" width="400" /></a></div>
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<span style="font-family: Verdana, sans-serif;">the two of them, along with a team of 40 (youth, adults & a flamingo named Floyd) are driving to Ensenada to serve in a local orphanage. This is the hubster's third "Project Serve Mexico" trip and my girl's first trip!</span><br />
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<span style="font-family: Verdana, sans-serif;">please keep them in your prayers - for the Hubster as he provides leadership for the team, for safety on the road (canada to mexico is a LONG drive), cohesion & bonding as a team and for energy and joy while serving in the orphanage!</span><br />
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<span style="font-family: Verdana, sans-serif;">also if you could pray for those of us (spouses & family members) left behind that would be appreciated. they will be gone for 2 weeks so it's a long haul for everyone!</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiNdcpGwI56UIjeHrepLdV97QZahu0I2XL7hH_vGzOvro_PIbXaMzYZv6GHOgt02aOjy_I3k_N2huw5DKEUeg5VINOGcuXhdcIavOF5iQ4IoRpRVWdnP9eY4Cti94Ce7_dfJpUbBRVFrBmq/s1600/psmex15+teampic.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiNdcpGwI56UIjeHrepLdV97QZahu0I2XL7hH_vGzOvro_PIbXaMzYZv6GHOgt02aOjy_I3k_N2huw5DKEUeg5VINOGcuXhdcIavOF5iQ4IoRpRVWdnP9eY4Cti94Ce7_dfJpUbBRVFrBmq/s400/psmex15+teampic.jpg" width="400" /></a></div>
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<span style="font-family: Verdana, sans-serif;">if you would like to follow their journey or are simply just curious about floyd the flamingo, you can find, like & follow them on social media sites listed below:</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;"><b>Twitter:</b> Search for PSMEX15 and follow us</span><br />
<span style="font-family: Verdana, sans-serif;"><b>Instagram:</b> Search for PSMEX15 and follow us</span><br />
<span style="font-family: Verdana, sans-serif;"><b>Facebook:</b> Like us on <a href="http://www.facebook.com/GVYFCYouthUnlimited">www.facebook.com/GVYFCYouthUnlimited</a></span><br />
<span style="font-family: Verdana, sans-serif;"><b>Youth Unlimited Blog:</b> Visit the website <a href="http://www.youthunlimited.com/blog/">http://www.youthunlimited.com/blog/</a></span><br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjQ5W5LUCMhyZiYEqU90MEahmzrx4VNjVOPPysEeTedAwhwnSYZylscZ03PBqm9lLz6TuVbb6sDQcWZ4sAagKiG2VgctWB_knMWlifVFHrCjyhy7cnvfmty_iVxyd0f5anGXhT_UE1fq9t5/s1600/floydpsmex15.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjQ5W5LUCMhyZiYEqU90MEahmzrx4VNjVOPPysEeTedAwhwnSYZylscZ03PBqm9lLz6TuVbb6sDQcWZ4sAagKiG2VgctWB_knMWlifVFHrCjyhy7cnvfmty_iVxyd0f5anGXhT_UE1fq9t5/s400/floydpsmex15.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">pink floyd</td></tr>
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s.http://www.blogger.com/profile/02214787682053856588noreply@blogger.com0tag:blogger.com,1999:blog-1032680752522787900.post-68191227745575058952015-07-28T14:29:00.002-07:002015-07-28T14:29:21.514-07:00THE STINGING TAKE-AWAYS<div dir="ltr" style="text-align: left;" trbidi="on">
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<span style="font-family: Verdana, sans-serif;">so this is me after i got stung by a wasp yesterday...</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhWFD1ygraO4ydtI18ZxLVdTyPWMZNV6A5i-cS-0obE23aW4WSBG440N6IDd7-zrdSFmMu1LOs_rkDnJNhIXXW0bt98hxCLrXVT8WaN9Z6L1virU-C3hyZcWhsFAlwvNNRih6_K9u6krCww/s1600/SHAN+WASP-TASTIC.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhWFD1ygraO4ydtI18ZxLVdTyPWMZNV6A5i-cS-0obE23aW4WSBG440N6IDd7-zrdSFmMu1LOs_rkDnJNhIXXW0bt98hxCLrXVT8WaN9Z6L1virU-C3hyZcWhsFAlwvNNRih6_K9u6krCww/s400/SHAN+WASP-TASTIC.jpg" width="400" /></a></div>
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<span style="font-family: Verdana, sans-serif;">i know. clearly a bit dramatic.</span><br />
<span style="font-family: Verdana, sans-serif;">but, in my defense, it was no regular, run-of-the-mill sting nor standard reaction.</span><br />
<span style="font-family: Verdana, sans-serif;">Oh NO, of course it was <b><i>NOT NORMAL AT ALL</i></b> because <i><b>I am Queen Bee of peculiar and bizarre things happening to me.</b></i></span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">(and just so you know, as it turns out, taking selfies is a pretty effective distraction for pain.)</span><br />
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<span style="font-family: Verdana, sans-serif;">i was out for a walk in our neighbourhood park and a wasp plowed into my face...actually, to be exact, it flew with pin point precision right up under my glasses and got stuck between the arm of my glasses and my temple. No lie. </span><br />
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<span style="font-family: Verdana, sans-serif;"><b><i>WHAT ARE THE CHANCES?</i></b></span><br />
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<span style="font-family: Verdana, sans-serif;">clearly, it did not appreciate the shaded UV protection offered by my specs, as it immediately backed its butt into my temple and stung me.</span><br />
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<span style="font-family: Verdana, sans-serif;">i reacted by screeching loudly, whipping off my glasses & frantically slapping myself upside the head. despite my ninja like moves, the stinging continued & this odd electric shock-like burning pain began rapidly spreading across my face. i had no idea if this was normal or the start of an anaphylactic reaction so i panicked. then i did the next logical thing - i made a bee-line for home...and i did not retreat quietly nor gracefully.</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">nope. not at all. shrieking trilly, with my arms flailing and karate-chopping the air, i half-walked/half-jogged through the park as fast as my on rubbery, shaky legs could carry me. i left stunned, mouth-gaping park goers in my wake.</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">i made a spectacular sight. in fact, i'm almost certain i darn near nailed the running style of Phoebe Buffay from Friends</span><br />
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<iframe allowfullscreen="" frameborder="0" height="315" src="https://www.youtube.com/embed/6HuqNdQJSTY" width="560"></iframe>
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<span style="font-family: Verdana, sans-serif;"><br /></span><br />
<span style="font-family: Verdana, sans-serif;">by the time, i haphazardly stumbled into my house, my face was ON FIRE. the pain was radiating into my jaw and the entire left side of my face had this odd numb, swollen, burning sensation. i was sure my face & head must be astronomically puffing up.</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">i texted the Hubster to come immediately;</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">'<i style="font-weight: bold;">SOS</i> <i>- I got stung by a wasp. in bad pain.</i> <i>come quick.<b> </b></i></span><span style="font-family: Verdana, sans-serif;"><b><i>FYI</i></b> <i>- don't be alarmed but pretty sure my head is swollen the size of a watermelon.'</i></span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">then i took a deep breath and bravely checked my face in the mirror hanging in our entrance.</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">there was one, teeny tiny, very minuscule red dot at the sight of the sting.</span><br />
<span style="font-family: Verdana, sans-serif;">NOTHING ELSE.</span><br />
<span style="font-family: Verdana, sans-serif;">no swelling. no angry redness. no splotchiness. no hives.</span><br />
<span style="font-family: Verdana, sans-serif;">not even one itty bitty bit of puffiness.</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;"><i>i looked nothing like how i felt.</i></span><br />
<span style="font-family: Verdana, sans-serif;"><i>ironic how bug bites have a way of doing that to me.</i></span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">despite my normal appearance, my face was burning something fierce, so i made a bee-line for an ice pack.</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">the hubster appeared then. and i told him how that wasp so precisely flew directly into that spot between my head and glasses. and how it stung me and how bad my head was burning and how choked i was that i had NOTHING to show for my pain.</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;"><b>"Like, what are the chances?!"</b> I exclaimed.</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">to which he dismissively replied, <i>"Actually, that probably happens more often then you'd think."</i></span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">and i indignantly huffed, <i>"NO WAY! This is NOT normal. <b>This is rare - my experience is UNIQUE.</b> Flukey things ONLY happen to ME. <b>Do NOT take THAT away from me."</b></i></span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">and my girl, overhearing our conversation, gasps <i>"AWH poor thing!"</i></span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">and right as i'm ready to bask in the light of her sympathy she continued, <i>"She must have been so scared when she got stuck in your glasses. No wonder she stung you."</i></span><br />
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<span style="font-family: Verdana, sans-serif;"><b><i><br /></i></b></span><br />
<span style="font-family: Verdana, sans-serif;"><b><i>The Stinging Take-aways;</i></b></span><br />
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<ol style="text-align: left;">
<li><span style="font-family: Verdana, sans-serif;"><i>my girl values the emotional distress of a wasp more than my physical pain</i></span></li>
<li><span style="font-family: Verdana, sans-serif;"><i>i have a propensity for acquiring bug bites that give me pain that is invisible to the naked eye</i></span></li>
<li><span style="font-family: Verdana, sans-serif;"><i>taking selfies is an effective pain management technique</i></span></li>
<li><span style="font-family: Verdana, sans-serif;"><i>i could be a stunt-double for Lisa Kudrow</i></span></li>
<li><span style="font-family: Verdana, sans-serif;"><i><i style="font-family: 'Times New Roman';"><span style="font-family: Verdana, sans-serif;">i have had very intense noise sensitivity and brain fog for the past week and a bit. interestingly, 6 hours post-sting, those symptoms suddenly lifted. </span><span style="font-family: Verdana, sans-serif;">i am now 24 hours post-sting and am still brain fog and noise sensitivity free. coincidence? maybe or maybe not.</span></i></i></span></li>
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<i style="font-family: Verdana, sans-serif;">i am currently researching bee venom therapy for lyme disease. i'll keep you posted.</i></div>
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s.http://www.blogger.com/profile/02214787682053856588noreply@blogger.com1tag:blogger.com,1999:blog-1032680752522787900.post-49553142530834131922015-07-27T08:30:00.000-07:002015-07-28T18:06:18.893-07:00MY GIRL<div dir="ltr" style="text-align: left;" trbidi="on">
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">my girl... with the aquamarine eyes and tender heart that brims with sweet sensitivity & compassion for all living creatures; great or small; furry, feathered or scaled; she loves them all.</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEha57qyTLzKOduhtoXQN-4DVNaLZVnvy3gsK-6JNvarZ17P4FF9P6zUeCCLyApINkg7MAB2NJrVlNj4_wTiiC20mobfUB3hPwrTItYUS1_s5vG4cR837Ox_zvaio0QlweRGglUuL9eVuMed/s1600/avery+and+keith.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEha57qyTLzKOduhtoXQN-4DVNaLZVnvy3gsK-6JNvarZ17P4FF9P6zUeCCLyApINkg7MAB2NJrVlNj4_wTiiC20mobfUB3hPwrTItYUS1_s5vG4cR837Ox_zvaio0QlweRGglUuL9eVuMed/s400/avery+and+keith.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">CUDDLING A BABY JOEY NAMED VICTOR<br />
(Kangaroo - 2 weeks out of the pouch)<br />
Kangaroo Creek Farm - Winfield, BC</td></tr>
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<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">she is beauty and light and joy amidst suffering and heartache.</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">she is equal in witty repertoire and insightful musings.</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">last night she wrapped her arms around my neck, breathed in deep and murmured, "<i>i could just hug you forever. i love you and dad so much. i mean, i have always even deeply liked you guys...but recently i've become aware of how much i deeply value you.</i>"</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">and my heart beat wild and fierce in my chest. and i hugged her tight and wished with all my might that i could freeze time.</span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjZ2siyKlLqkeKIF6nHnBwEf-w01QeSzLCp7PgfVjRG-hzzR_arcQbbWjfY-26m83tAZMtbQeBsHDSO8Yux_rk7YNhLwzsBQAo-cP6mMVZAJQoudVGY00RjlSQ6zVV3ODVM4uWLa-MnjsuC/s1600/avery+and+lucky.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjZ2siyKlLqkeKIF6nHnBwEf-w01QeSzLCp7PgfVjRG-hzzR_arcQbbWjfY-26m83tAZMtbQeBsHDSO8Yux_rk7YNhLwzsBQAo-cP6mMVZAJQoudVGY00RjlSQ6zVV3ODVM4uWLa-MnjsuC/s400/avery+and+lucky.jpg" width="387" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">SHE LOVES ALL CREATURES. BE STILL MY BEATING HEART!</td></tr>
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<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">i marvel at the gift this one is. and i hope and pray that i can raise her to always deeply value and love herself and the one who created her.</span><br />
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s.http://www.blogger.com/profile/02214787682053856588noreply@blogger.com0tag:blogger.com,1999:blog-1032680752522787900.post-52473006707119679312015-07-13T22:09:00.002-07:002015-07-13T22:17:59.107-07:00THE HOLIDAY WIPEOUT<div dir="ltr" style="text-align: left;" trbidi="on">
<br />
<span style="font-family: Verdana, sans-serif;">we had the opportunity to get away to a friend's condo in the Kelowna area this past week. we were grateful to take take a trip that does not, (er, well was NOT supposed to) involve doctor's appointments or medical treatment. since we started having to travel to the USA for medical treatment in 2008, much of the hubster's vacation time has been eaten up by trips to Seattle, WA to see DR D, San Fran, CA to see DR H or other medical related travel and doctor's appointments. </span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span><span style="font-family: Verdana, sans-serif;">the past several months have been a chaotic gong show. parker's relapse, another family member's extended hospitalization, my own ongoing health challenges have really taken a toll. especially on the Hubster. so we were hoping this week away would provide some rest and respite. </span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span><span style="font-family: Verdana, sans-serif;">the primary symptoms that parker's struggling with on a daily basis are severe joint pain, insomnia, brain 'loopiness' and intense fatigue. these have been intense enough to keep him on the couch or in bed most days. however, in the 3 weeks leading up to this holiday, he had been having a few 'up moments' on some days. he had even felt well enough to get out for a several bike rides and swims. </span><span style="font-family: Verdana, sans-serif;">we were hopeful that parker would have a few 'good days' while we were away so that we could all enjoy a few fun outings as a family.</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">the one foreseeable hurdle was the pretty pill protocol. <i>(<a href="http://ticksandtrust.blogspot.ca/2015/07/the-pretty-pill-protocol-mini-update-on.html" target="_blank">read blog post about that here</a>)</i> he was scheduled to start it the day before we left. the timing of this was a bummer - as often any new protocol targeting his multiple infections will cause an increase and intensity in his symptoms. (these flares are called "jarisch herxeimer reactions" aka "herxing".) a herx can last anywhere from a few hours to several weeks - many factors play a role in the intensity and duration of a herx.</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">the first 48 hours on the pretty pill protocol were rough for parker. 12 hours after beginning the pretty pill protocol, he was hit hard with herx. this coincided with our travel day up to Kelowna (about a 4 hour drive from our home). he was fine for the first 2 hours of the drive and then he was suddenly taken down by sharp and intense pain. he described the pain as like being stabbed with a knife and having glass rubbed into the cut. the pain was primarily in his face and head) while this may sound a bit bizarre, this is a very typical symptom experienced by lyme/bartonella patients) it really knocked him off his feet.the remainder of the drive, was spent with him hunched over, hands clutching his head and moaning in pain. he spent the majority of the first 2 days of our get away in bed with this pain. as brutal as he felt and as hard as it is to see him suffer, the severe and sudden increase in symptoms is actually a positive sign that these new meds are targeting the infections. </span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<br />
<span style="font-family: Verdana, sans-serif;">on the afternoon of our third day, he rallied and his pain became more manageable. he asked if we could go for a bike ride. </span><span style="font-family: Verdana, sans-serif;">riding brings parker great joy and feeds his spirit. </span><span style="font-family: Verdana, sans-serif;">we were happy to oblige! </span><span style="font-family: Verdana, sans-serif;">biking is something we enjoy doing as a family (<i>ok, avery is not a huge fan of it but she takes one for the team.</i>) it is rare for us to be able to do activities as a family so it is not something we ever take for granted.</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">the Hubster is especially keen on it. he has been running mountain biking clubs in east van high schools for 20 years.</span><span style="font-family: Verdana, sans-serif;"> he has also spent many years yearning for the day that parker would be well enough to ride with him. when this finally happened during parker's remission last summer, parker took to biking like a fish to water. he quickly developed a passion for it and demonstrated a natural ability. much to the hubster's delight, parker rapidly became a very skilled and competent rider. </span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">recently, parker received a new bike. lighter. faster. fitted to him. this was due in a large part to the generosity of a young man named steve, who is a mountain biking enthusiast himself. the Hubster has known steve for a long time - when steve was a teenager he was in one of the Hubster's riding clubs...steve still looks 12 but he's actually in his 30s). this makes us feel old. </span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">parker has been anxious to get out and break in his new bike but just hadn't been well enough to ride since getting it. so when he declared he felt well enough to go out, we geared up and headed out right away. keeping in mind his physical challenges, w</span><span style="font-family: Verdana, sans-serif;">e set course on a pretty placid, beginner trail. we weren't out for long before parker's lyme symptoms flared and he began to feel really sick. he got off his bike and lay down to rest for a bit. this did not help. he felt miserable and just wanted to get back to the condo. we immediately turned around and headed back. </span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;"><b>several minutes later he wiped out.</b></span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">we did not see the actual crash as he was ahead of us and had just rounded a corner when it occurred. avery and i were the first to come upon him. this was traumatic for avery. parker has no recall of the crash at all. </span><span style="font-family: Verdana, sans-serif;">he was bloody, dazed and confused. he could not tell us where he was, what month or day it was, what he'd eaten for dinnner the night before or what had happened.</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">the short term memory loss, disorientation and rapidly developing goose egg on the right side of his temple earned him an instant trip to the ER. </span><br />
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<span style="font-family: Verdana, sans-serif;"><b><i>so much for a doctor and hospital free trip.</i></b></span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">he is being treated for a concussion. he had to have complete rest and no brain stimulating activities (<i>no electronics, reading, xbox, listening to music etc</i>) for the following 24 to 48 hours. he has a black eye, swelling, abrasions and a cut on his right temple. he has a line of contusions, broken blood vessels and bruising running along the right side of his scalp - even though this part of his head was covered by his helmet. the right side of his body and head are most likely the areas that took direct impact and the brunt of the crash. the left side of his body is also bruised and covered in road rash so it is likely he rolled and slid on impact. his left hip and left shin are bruised and sore as well. </span><br />
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<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">at the hospital </span><span style="font-family: Verdana, sans-serif;">the doctor was assessing him and asked him what number his pain was on a scale of 1 to 10. 1 means no pain. 10 means</span><span style="font-family: Verdana, sans-serif;"> worst pain ever.</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">parker described his pain as a level 4. the doctor was taken back by this and questioned his response, <i>"a four? really? did you understand the pain scale? the lower numbers mean low pain. a one means no pain!"</i></span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">parker assured him he understood. (they have no idea how well acquainted he is with 'the pain scale'.</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;"><i>"woah, you are one tough guy!"</i> the doctor exclaimed.</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">the nurses had to scrub and clean the dirt and debris out of all his wounds. he grimaced twice but did not flinch or wince. (<i>i cringed the whole way through</i>). the nurses could not believe how stoic he is nor how high his tolerance level is for pain. they kept telling him how amazed they were by him.</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;"><b><i>i kept thinking you don't know the half of it.</i></b></span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjm2qo5G9LNqWA36Ljx1OPUTPO4V8_6xWbPn_SEdqbChPouNrk9Q4bi0wZ52FTceoSQkFBkekatgMvd0mYWxp0uYeaXoutbgAkJxgE07UJJkZpvxz-WTNaTts8nGMKqoG4suYVMq4B1TjfG/s1600/sparky+shoulder+patch+up.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjm2qo5G9LNqWA36Ljx1OPUTPO4V8_6xWbPn_SEdqbChPouNrk9Q4bi0wZ52FTceoSQkFBkekatgMvd0mYWxp0uYeaXoutbgAkJxgE07UJJkZpvxz-WTNaTts8nGMKqoG4suYVMq4B1TjfG/s400/sparky+shoulder+patch+up.jpg" width="298" /></a></div>
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<span style="font-family: Verdana, sans-serif;">this kid is amazing. he is a warrior. no matter how painful his life is he just keeps fighting his way through it. he has learned to cope and function in spite of living with a level of pain most folks cannot fathom. he has been in ERs and hospitals countless times before in agonizing pain due to lyme. often describing this pain as an 8 or 9 out of 10. yet because his pain is 'invisible' and caused by a disease that is not considered real, his pain is dismissed as being faked and/or attention seeking behaviour. or perhaps, not near as bad as he says it is. we've been told that <i>"some kids just have a very low tolerance for pain - often because they are more anxious than the average child."</i> we've been sent home from ER visits loaded down with resources on how to parent your anxious child or referrals to psychiatrists/psychologists.</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjvPH3yJZ0fDjZhSHcW0WrvKzcw-63P3LjpFb06rkTLyQl1E5Nbia7YQlg5m4DeujzqNNwd9QAdcpQAP2UN3l83kvRyoF8UUtdH7aR9LeO5P4g9gkOSTovaDYOg_K1zX6Q8EzbIi2RBVOhW/s1600/sparky+shoulder+day+1.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjvPH3yJZ0fDjZhSHcW0WrvKzcw-63P3LjpFb06rkTLyQl1E5Nbia7YQlg5m4DeujzqNNwd9QAdcpQAP2UN3l83kvRyoF8UUtdH7aR9LeO5P4g9gkOSTovaDYOg_K1zX6Q8EzbIi2RBVOhW/s400/sparky+shoulder+day+1.jpg" width="400" /></a></div>
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<span style="font-family: Verdana, sans-serif;">now take same exact kid and arrive in ER with him describing visually gnarly wounds as only a level 4 and suddenly he's hailed as uber tough and amazing. </span><br />
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<span style="font-family: Verdana, sans-serif;">the irony gives me a level 10 headache.</span></i></b><br />
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<span style="font-family: Verdana, sans-serif;">life is not fair. we know that. we don't expect it to be. we also know that the outcome of this crash could have a lot worse. we are very, very thankful he did not suffer more severe injuries. we pray that the trauma his body and head sustained will not further aggravate his lyme. the one upside to all of this is that he is finally sleeping at night (most likely because of his concussion). he has had pretty severe insomnia since january so we are all happy he is finally getting some sleep.</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi735NVNoTmep4-_ZkqBOvL_toNKqFPsFCFKKOy8-BgPmOAtaZyqMI7mLBEQ8Uqq1BJBq8ukKJpRVP-mQHKe1ENkZZOhPVrHc0-0h56wZvgieLc7UPxmCsgiqclf6aj0minMFsNlml4qwn_/s1600/sparky+eye+day+3.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi735NVNoTmep4-_ZkqBOvL_toNKqFPsFCFKKOy8-BgPmOAtaZyqMI7mLBEQ8Uqq1BJBq8ukKJpRVP-mQHKe1ENkZZOhPVrHc0-0h56wZvgieLc7UPxmCsgiqclf6aj0minMFsNlml4qwn_/s320/sparky+eye+day+3.jpg" width="320" /></a></div>
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<span style="font-family: Verdana, sans-serif;">but let me be frank, THIS BITES. IT HURTS. BIG TIME. his crash is a blow both physically and emotionally. for the past 6 months, parker's "good days" have been so few and far between so to get taken down on a "good day" while doing something he loves but so rarely can do is like adding insult to injury. </span><span style="font-family: Verdana, sans-serif;">we are now 6 days post accident and he is healing. it is nice to see visible signs of progress each day but </span><span style="font-family: Verdana, sans-serif;">the crash pretty much wiped out his entire holiday. aside from a little family walk down by the Kelowna waterfront, that ill-fated bike ride was the only outing we had all together. regardless of whether or not he was having a 'good day' lyme symptom wise, he has been laid up on the couch with a bruised up body and concussed brain. </span><span style="font-family: Verdana, sans-serif;">but we know that he will overcome this setback too. no matter how many times he gets knocked down, he keeps getting up. </span><span style="font-family: Verdana, sans-serif;">he's a fighter. fall down seven times, stand up eight. </span><span style="font-family: Verdana, sans-serif;">his strength and resiliency and ability to keep smiling in the face of adversity are astounding. </span><br />
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<span style="font-family: Verdana, sans-serif;">those nurses got it right.</span><br />
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<span style="font-family: Verdana, sans-serif;"><b><i>he is amazing</i></b>. </span><br />
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s.http://www.blogger.com/profile/02214787682053856588noreply@blogger.com6