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

HEALING IRON MAN

{comedy is a necessity to get through life with the fewest scars. 

humor is the best antidote to help relieve struggles.}

                                                                        ~Suzy Kassem

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. 

where would we be without the hubster's humor, eh?

sparky's incision & collarbone are healing well and range of motion in his arm/shoulder is back to nearly 100%. we are amazed at how quickly his body is recovering from this injury. it has actually been very odd to experience such a rapid and uncomplicated recovery process.

this is not in our realm of normal. 

healing from (chronic) Lyme is so vastly different.  fighting chronic Lyme is complex, frustrating and never follows a predictable pattern. it is an arduous marathon of "one step forward, two steps back"... it takes an iron will, body and mind to battle this disease.

it is a journey that sparky has been battling his way through for nearly 7 YEARS now. 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. his current treatment protocol has helped reduce his joint pain and as a result he is sleeping better. he has also gained back 10 of the 20lbs he lost this past fall. less pain, more sleep & weight gain mean that he is stronger & able to get out for small amounts of time and/or attend school for a few hours per week. we do not take these gains lightly - they are significant and we are relieved that he is no longer deteriorating. however, he continues to spend a good deal of time in bed due to profound fatigue, brain fog, headaches and noise sensitivity. some days these symptoms are very intense & disabling.

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 crash temporarily side-lined further investigation as well as delayed treatment. 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.

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 to move forward with more aggressive treatment.

on thursday we will be travelling to Seattle, Washington. he is scheduled to have a two hour appointment with one of his Lyme docs as 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). 

we are hopeful that as a result of these appointments, he will have a treatment plan that will address his infections, his mitochondrial deficits, and heavy metal toxicity & other underlying co-morbid issues that are continuing to 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.

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, "ummm, hmmmmm... nope, nada. i got nothing more to add." 

my heart is heavy as lead. 

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. 

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 McDonalds rant here or search him out on youtube. 

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!

RIDE FOR PARKER (aka SPARKY)

If you haven't already heard about Daniel and Tanner and the 8,000km cross Canada bike ride they are doing to raise awareness and funding for Lyme Disease then please visit their website (Learn more about the mission of Ride for Lyme at Rideforlyme.ca or visit their Facebook page RideforLyme) 

Each day of their 2 month journey across Canada, they dedicate that day's leg of the journey to a Canadian Lyme patient. They call it a "daily ride dedication" and they post it on their facebook wall along with a little write up about the person. 

Today, they will be riding from Atitokan to Shebandewan, ON and are riding in honor of our son, Parker. It is hard to find the words to express the gratitude we have and how incredibly moved we are to have our Sparky's story and fight honored in this inspiring way.

This Ride for Lyme Daily Ride Dedication is for Parker - affectionately nick-named "Sparky". 

When the shadow of Lyme fell upon Parker's life in September 2009, he was a little boy of nine. When he finally emerged from those shadow-lands in May 2014, he was a young man of fourteen. He experienced 7 glorious months of remission. Then, in January 2015, Lyme returned with a fury; once again casting its ugly, all-consuming shadow upon his life. 

He has now been essentially bedridden since March 2015. His days are pain-filled, long and isolating but he is not one to complain or be bitter. His sweet smile is always accompanied by a positive or witty remark and he gives the best. hugs. ever. Yet his grief & loneliness over being cut off from life again and deep discouragement over being back in a place of great suffering are palpable. 

His recent relapse has been a gutting and devastating blow for our entire family. Hopelessness is a pervasive feeling we daily struggle with. Yet we solidly believe this: there is a road out of this disease and into remission for every person fighting Lyme. We found Parker's way out once and we hold on to the hope that we will find it again. Healing is possible!

Hope in front of Parker. Hope is in front of each of us.

Parker on the beach in Santa Cruz, CA during a visit to his Lyme doctor (LLMD) in January 2014. At the time, we had been flying to California to see his LLMD every three to four months since December of 2009. This was the FIRST trip he ever made without his wheelchair in all those years. This trip was significant - we could see that he was finally emerging from the shadow-land of Lyme.

THE DESCENT 
Sept 2009 to Dec 2009 

Our Sparky boy, September 2009

Parker went from healthy and active to wheelchair-bound in six weeks. Over the following 3 months, he was seen by countless specialists, underwent a multitude of tests and was hospitalized numerous times at BC Children's Hospital. No one could figure out what was making him so sick. He had 60 of the 75 symptoms of Lyme, yet doctors refused to consider Lyme. In fact, a BCCH Rheumatologist told us, "It is impossible to get Lyme in BC."

THE MISDIAGNOSIS

He was released from a week long hospitilization with a diagnosis of Idiopathic Pain Syndrome and Movement Disorder. The treatment plan included physiotherapy, pain management, psychology and antidepressants. He did not improve at all. In fact, he deteriorated further. 

Our Sparky boy lost his spark. 

Dad had to take a leave of absence from work in order to help care for him. There were many sleepless nights. We began questioning his diagnosis. Research always led us back to Lyme. Combing through his medical files, we discovered a positive lab result for an infection associated with Lyme. this was news to us. We had been told by Infectious Disease doctors in the hospital there was no evidence of infection. Shortly after this discovery, we made an appointment for Parker to be evaluated by a leading Lyme doctor in the USA.

THE DIAGNOSIS
Dec 2009

Doctor's notes 

By the time he was finally diagnosed with Lyme, Babesia and Bartonella in December 2009 by a Lyme doctor (LLMD) in California, he was an emaciated shell of his former vibrant self. He could no longer walk, feed or clothe himself. 

Skeletal and covered in rashes

The delay in diagnosis meant Parker's infections were deeply entrenched and life-threatening. His USA LLMD started him on aggressive antibiotic treatment immediately and told us to prepare for a long and brutal fight.  

THE COST OF IGNORANCE 


With a lab-confirmed diagnosis and treatment plan in hand, we returned to Canada with high hopes Canadian doctors would partner with his USA LLMD to provide treatment. This did NOT happen. BCCH doctors harshly criticized his diagnosis, scoffed at his positive blood test for Lyme, and refused to work with his USA LLMD.

Parker, February 2010

Parker was abandoned by our health care system.

The ignorance of lyme in BC and systemic bias against treating it in Canada nearly cost our son his life. It cost us too; physically, emotionally and financially. For the next 5 years, his medical treatment was under the care of his USA LLMD - and paid for out-of-pocket by us.


THE VALLEY OF THE SHADOW
Dec 2009 to Oct 2013

Parker with his Second of Three PICC Lines,  February 2012, Seattle, WA

It has been said that fighting Lyme is a marathon battle of one step forward and two steps back. This was very much the case for Parker. The years of treatment that followed his diagnosis were a marathon of setbacks; debilitating fatigue, unremitting joint pain, cognitive decline, hallucinations, seizure like tremors, migraines, sound and light sensitivity etc. During this time frame, we often felt like we were living in the valley of the shadow of death. Our Sparky boy could rarely walk independently and was too ill to go to school or play with friends. His childhood was consumed by daily regimens of IV meds, pills and doctor's appointments.   

SIGNS OF LIFE
Oct 2013 - May 2014

Finally began to see sustained levels of progress with fewer setbacks. Parker was able to walk more steadily for longer periods of time and with less pain. Then came that first epic trip in which he traveled to see his LLMD without his wheelchair! As the months progressed, he was finally able to ditch his wheels for good! He began intensive physiotherapy to rehabilitate his body.

REMISSION and RESTORATION!
Summer 2014 - January 2015

Parker, Train Wreck Trail, Squamish, BC, Summer 2014

It's official: Lyme is in remission! He is slowly weaned off of all his medications. He begins the process of re-integrating into life!  

He returns to school! He was so excited and nervous. The last time he was in school he had been in grade 5 - he was now in grade 10! Talk about a steep learning curve. Yet his transition went remarkably well! He made friends, had sleepovers, and hung out. 

He made his high school basketball team! The goal of playing varsity basketball was a dream he had held on to through his long years of illness!

He discovered new interests: long-boarding and mountain biking. His Dad, who has run a mountain bike club in local high schools for 15 years, was elated! Parker proved to be a natural rider - effortlessly ripping single track on trails all over the lower mainland - from the North Shore to Whistler. He easily blew past dad, leaving him to eat dust.

Parker - Killing it in Whistler, BC, Summer 2014

During this time, we still found ourselves caught off guard just seeing him effortlessly walk into a room, so the sight of him on a bike or on the b-ball court felt completely surreal. It was a miraculous sight to behold!

ON TOP OF THE WORLD
January 2015

In January 2015, he went on a four day back-packing trip with his class to Tetrahedron Park (near Sechelt, BC). He was one of three students who completed the climb up Mt Steel (summit 5400+ feet).

Parker and classmates on top of  Mt. Steel, January 2015

He came home pumped and looking healthy and vibrant after this mountain-top experience. Through the long dark years of his illness, we had always held on to the hope that he would recover but never in our wildest dreams had we ever anticipated his recovery would be so full and complete. We finally felt it was 'safe' to exhale and fully embrace his recovery. We were all on top of the world!

Three days after the trip, he got sick. We hoped it was "just the flu" but as the weeks passed and we once again watched our son deteriorate that hope faded.

RELAPSE
March 2015 to present

"We are stumbling numb through a twilight zone we dared to believe we'd left behind - how do you even find the words to explain the devastation of relapse." ~ Sparky's Mom (excerpt from "Reality of Relapse" blog post, March 2015)

In March 2015, his relapse of Lyme and Babesia was officially diagnosed by his LLMD in California.

Since January 2015, aside from a handful of days, he has been essentially house -bound. Most days it is a struggle just to get from his bed to the couch. He is no longer able to attend school. In the five months since Parker relapsed, he has received one get well card and a few cherished emails. We can count on one hand the number of visitors he has had. He feels very alone and forgotten.

GOING THE DISTANCE!

We know he is loved and prayed for but, for whatever reason, those sentiments rarely make the transition from thought to action. Practical helps and physical presence is sorely lacking for him and our family).

Why? That's a question we often ask. Is it a case of "out of sight, out of mind"; or not believing the patient is as sick as they say they are; or is the withdrawal simply because folks just don't know what to do or say. Whatever the reason(s) - the silence is deafening and the retreat is deeply wounding. It is challenging to help our son process this when we ourselves do not understand it.

For years, the only wheels Parker rode were attached to a chair.

This is a delicate and difficult part of the journey to share. Being vulnerable is risky.

Parker would never ever want to be pitied. We felt it important to acknowledge this part of his journey because this troubling aspect of Lyme is not unique to our family. Feeling isolated and abandoned by family and friends is an all too common experience in the Lyme community. The road to recovery is a long and arduous one. Very few friends and even family members have the stamina to go the distance. 

Daniel and Tanner, this is exactly why we believe your Ride for Lyme means so much to so many.

You guys are going the distance for each and every one of us that has felt pushed aside, forgotten and abandoned. 

Today, as you specifically ride in Parker's honor, he will see love in action. He will know his story matters because two men he has never met are going the distance for him. As he sees the pictures of you on your bikes, he will know that his pain and suffering are being carried across Canada in your hearts and legs. 

Daniel and Tanner, your ride is love in action. Thank you from the bottom of our hearts! Thank you for going the distance for our Sparky boy, Parker. Thank you for going the distance for all of us. For Lyme. For Hope. 

Ride on, Ride for Lyme, Ride on! 

With immense gratitude and appreciation,
The Goertzen Family
Graham & Shannon
Taylor, Parker, Avery & our fur-baby, Harrison #lymepooch