May 20, 2016

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)


video

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.



May 16, 2016

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.


May 14, 2016

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