FROM WHERE I SIT

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.

TRAIL DOG (LDC 2016)

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! 

this warning comes on the tail of learning a teenager recently contracted lyme on a family bike ride on a trail in our city, that's right NOT in the woods or the forest but on a suburban city trail that runs through the city of Richmond, BC. 

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 Canlyme.com and Lymediseasechallenge.org 

And please help spread the word by doing the Lyme Disease Challenge - take a bite out of lyme before a tick takes a bite out of you!

Biking is rad; Ticks are bad.

One bite from a tick could make you really sick.

Lyme Disease is a global epidemic;

Furry or not, all are at risk!

Guard against tick bites;

Wear deet at your feet &

put permethrin on your gear.

Get advice from your vet;

on how best to protect your pet.

Then ride without fear;

shred without dread.

Choose flowy or tech;

Or take on the north shore gnar if you dare.

Roam over loam; Rip with pride.

Whoop, holler, and get big air!

But most important of all,

Do a tick check after every ride!

On Instagram, Harrison, Lyme Pooch, challenged these mountain biking badasses: 
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 help spread awareness one rider at a time.

TAKE THE CHALLENGE: It's as easy as 1,2,3...

1. TAKE A BITE: Take a video or photo of you biting a lime
2. SHARE A FACT: Spread awareness by sharing one fact about Lyme Disease
3. PASS IT ON: Post online & Challenge 3 other people to take a biteout of Lyme! Use hashtags #lymediseasechallenge #lymepooch 

To wussy to do the challenge? Then please consider making a tax deductible donation to ILADS.org

More info & facts on lyme: lymediseasechallenge.org

You can follow Harrison on 
IG: Harrison P. Goertzen @Worldaccordingtoharrison
FB: World According to Harrison

ACTUALLY, I CAN...

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. 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!

"oh liv, you light up my life!"

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,  "do it, mom! do it right now! otherwise you won't." 

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, "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!" 

but they just laughed and kept encouraging me and yelling, "you can do it!"

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. 

friday dawned and i nervously checked the liv cycling IG account...

i didn't win.

i felt so deflated...whooosh....just like someone let all the air out of my tires.

neither did i win the next week.

or the one after that or the one after that.

:(

then today my picture and story were posted on the liv cycling IG with this message attached;

"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!"

i promptly burst into tears and then did a happy dance! 

i am truly honored and delighted to be chosen! riding has/is helping me re-define how i see myself and that i am more than 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.

the following is the piece that i submitted (albeit, there are a few extra wordy details here that had to be cut out in order for it to post on IG):

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

this past summer (2015), i tried down-hill mountain biking for the first time.

and i LOVED it.

like totally and completely LOVE LOVE LOVED IT.

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.

i am obsessed with it now.

like i can't get enough of it obsessed.

it was during that first rip down that mountain at silver star bike park that i realized actually, i can get my life back.

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. 

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.

and isn't it all downhill after 40?

oh yeah baby it is!

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.

and it makes me feel like a fearless bad-ass to boot.

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. 

thank you to liv cycling for the amazing work you do to encourage and empower women! 



**got my fingers crossed that i win the bike in september!**

WONDERLAND

i'm just another Alice who's trying to find her way out of her head

 and into a wonderland. 

                                  ~V. Nada

wonderland trail - fall 2015

as i mentioned in healing takes courage, i've been dealing with a flare up of panic attacks, uncontrollable vomiting and endless, pink tears recently. i'm not entirely sure what is all contributing to it but it had the markings of what a strep flare (pandas) looks like with me (sore throat, sudden onset panic attacks, intensifying anxiety and rapid weight loss) 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.

that's the magic of moxi! lol 

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.

about 45 minutes into the ride - i had my first outburst of uncontrollable sobbing followed by a panic attack (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)

the fact that it happened during a bike ride fully did me in. 

Wonderland - Spring 2016

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.

i was unable to escape this sense of overwhelming grief and alarming sense of doom, my 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 -

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.

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 this is me, this is how i always am and how i will always be - i am wholly convinced of that as fact not fiction. i don't lose touch with reality but i can't find my way out of the rabbit hole...and now that was happening on a ride!?!

are you freaking kidding me?

that overwhelmed me with a sense of desperation, sorrow and rage.

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.

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.

could it happen again? 

biking is my happy place. the sense of wonder and joy and freedom i experience on my bike is something i cherish. 

could that have been taken from me now?

i've lost so much to these diseases - could i have now lost this thing that has been my beauty in the ashes?

Wonderland - Spring 2016

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. 

6 days passed.  

then sunday dawned and i looked at the hubster and said, 

"today we ride for tomorrow we may die."

ok. i didn't exactly say that...i'm almost but not quite that dramatic. lol.

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 (and yes i am dramatic enough to think of that).

off we went.

the trail was everything i remembered it to be 
and
i was everything i am when i am on my bike. 

free. happy. hooting and hollering. alive. giddy.


i was ripping along and thinking, "oh, its just so pretty i should slow down and take it all in...maybe even stop and take some photos..." - but then i thought, 'nah.' - once i'm riding it's hard to stop. i just wanna go. and i wanna go fast.

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! 

but the flat did not deflate my mood.  i took the moment to stop and smell the forest. hear the birds. to be still. i snapped some photos...and i even learned how to change a flat.

wonder of all wonders, i was able to be fully in the moment without movement or sound. 

sometimes, i listen to music when 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 'ride'...

"i've been thinking too much. help me.

oh, oh, i'm falling, so i'm taking my time on my ride"

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!)

it was an incredible day soaking in the breathtakingly vibrant vegetation and rad trails...

best of all, it was all ride and NO cycling thoughts!

PS
Wonderland is also a walking trail. so if you don't ride you can still enjoy it - i highly recommend checking it out!

PPS
it's tick season so be tick aware! wear repellents and do tick checks!

HEALING TAKES COURAGE

the boy's staples came out last week...

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.

his broken skin and fragmented bones are healing. this is good.

so then why am i splitting apart at the seams?

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)

what is going on?

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?

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.

is it the orange roots and hair balls i'm leaving in my crying, puking, trembling wake?

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?

or am i so broken and damaged and so lacking in resilience that i'm just coming unglued? (that's what my anxiety screeches in my ear)

it's probably a combination of all of the above.

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.

and yet, piece by piece the boy is healing.

his surgeon's advice is worth taking to heart for all of us.

take care. be gentle. go easy. be brave.

healing takes time, courage and patience...and it can even hurt - especially when the wound is fresh and runs deep.

but i can heal. we all can. never give up.

CHRONIC SORROW

"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" 

                                                                                          ~susan roos

purged some pent up grief today...

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.

sometimes life just feels overwhelmingly sad and tiring.

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.

healing is hard. it's a steady uphill slog. it's hard, exhausting and ugly. plus i'm dealing with a minor major hair color disaster at the moment so totally NOT feeling so cute right now either. (just keeping it real). part of me is like, "ok, shan, whatever it's ONLY hair" but on the other hand, it is really NOT nice. it's orange and yellow and that's NOT okay.  

some days nothing feels okay and everything feels sad and ugly.

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.

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.

as the last few fell, the settled and remained on my glasses. through my blurred vision their pretty purple-pink hue caught my eye.

i saw my pain on my glasses...but the pain on my glasses was reflected in a beautiful light.

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 

A TOUGH BREAK

so this happened on saturday.

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.

my last update about our sparky boy (read hope is what we crave) 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.

turns out the rug is his bike.

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.

Waiting for ferry.
He says the joint pain he experiences due to lyme is worse than the pain from his break.

i will be updating as i can.