THE NATURE OF THE BEAST

so i've recently had a relapse of bartonella (co-infection of lyme). 

i started antibiotic treatment (septra ds) for it on april 30. on may 2, i had a bit of a herx (a die off of the bacteria which temporarily increases symptoms) but for the most part it was very manageable (rare) and it didn't slow me down too much. 

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. (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.)

so all in all, i've actually been managing this relapse ok...until this week that is. 

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. 

Delta Watershed, May 16, 2016

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.

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.

sigh.

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. 

i've been in bed ever since.

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.

not at all how i envisioned this weekend going.

this is hard. the hilly terrain of chronic lyme with its unpredictable crashes, cycling symptoms and ever-changing landscape is hard to ride out.

but this is the nature of the beast.

Squamish - May 14, 2016

"If you are feeling frightened about what comes next, don't be. 

Embrace the uncertainty. Allow it to lead you places. Be brave as it challenges you to exercise both your heart and mind as you create your own path toward happiness. Spin wildly into your next action. Enjoy the present, each moment as it comes because you will never get another one quite like it."  ~ Everwood

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.

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. 

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. (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 hope it will help shed light on this beast's confounding nature.

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.

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.

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. 

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.

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.

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.

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.

be kind. you never know what kind of battle someone is fighting behind closed doors.

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

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. 

LYME POOCH RETURNS

may is lyme disease awareness month 

and oh me! oh my! - the first week of it has flown by! 

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.

Sew Serious!

have you heard of the lyme disease challenge? 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!  (for more info visit: lymediseasechallenge.org  - there are also details about participating in the challenge at bottom of this post)

it was a smashing success last year! harrison participated in it and that is how he earned the nickname, 'lyme pooch'. 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.

so that's right! the lyme pooch is back. and he's got lyme awareness ideas galore and brand new attire to wear! (believe it or not, he makes his clothes by altering and tailoring thrifted menswear shirts and/or from raiding master's closet.)

i've been very busy photographing all his fur-brained ideas for this year's 
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.

sheesh, there he was... just lounging around while i work myself to the bone!

you can follow harrison on his 
IG account - Harrison P. Goertzen @Worldaccordingtoharrison
FB page - World According to Harrison

...and please make sure to follow the lyme disease challenge on Facebook or Instagram too!

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!

additionally, he will be re-doubling his efforts to get ellen degeneres to participate - he's still licking his wounds after his challenge to her last year went unanswered.  

but one can always hope! 

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 the one time that taking a bite out of something is a very worthy thing to do! 

every bite counts! 

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..

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!

thank you in advance!

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!**

Canadian Federal Framework on Lyme

may is lyme disease awareness month! 

and this year, Canada is holding a conference to develop a federal framework on Lyme disease on May 15-17th, 2016!  

(OTTAWA, PRESS RELEASE) May 1, 2016 - “This year, Lyme Disease Awareness month presents a time to reflect on those Canadians affected by Lyme Disease as well as an opportunity for action. 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 – 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." 

~ Elizabeth May, MP (source)

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 "National Strategy for Lyme Disease in Canada" 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.(source: Elizabeth May, MP)

“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.” 

                                                        (~Elizabeth May, MP)

Everyone worked hard in getting Bill C-442 passed in order to have this conference! 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.  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!

REGISTER BY CLICKING ON THIS LINK:

http://www.healthycanadians.gc.ca/diseases-conditions-maladies-affections/disease-maladie/lyme/federal-framework-conference-cadre-federal/alt/registration-enregistrement-eng.pdf

Source: lymestats.org

"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."                                                                                                                         ~ Honorable Janis G. Johnson 

Anyone, anywhere is at risk for contracting Lyme Disease. 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. 

Thank You!