May 16, 2016


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. 

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. 

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've also recently suffered a bartonella relapse which adds fuel to the fire. 

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.

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. 

from where i sit...

currently, there is a lyme conference going on in ottawa (may 15-17) 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.

dear friends and family;

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.

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. ARE YOU FREAKING KIDDING ME? 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.

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. 

you are making a difference.

thank you from the bottom of my heart.

love s.

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