SO WHAT HAPPENED?

oops, i did the disappearing act again. darn! i was on such a roll with posting again and then whoosh, 3 weeks go by and nada. 

so what happened?

a few short days after the premiere airing of ticked off, we flew out to SF to see DR H. i planned on posting my thoughts about the documentary once we got down to SF. but, clearly, that did not happen.

so what did happen?

life.
lyme. 
and the roller coaster that life with lyme is.

so what happened?

in short; a sudden onslaught of nausea, increased vomiting and tremoring

in many ways, what happened is not explainable. 

it is often very hard to find the words to explain what happens in the world of lyme. my blog is meant to give a glimpse into what goes on behind closed doors but many times, it is just hard to find the words to describe what that looks like or how suddenly things can change. 

so we (graham and i) did something we've not ever done before - we filmed the sudden attack. we thought it might give folks a new perspective on what lyme looks like. lyme patients often hear "you don't look sick". what does sick look like anyway? lyme has a way of redefining that. after all, sick doesn't always look limp, pale and lethargic. 

at first, we just recorded a few seconds of footage but then, inspiration hit and we decided to make it into a "video blog" and share it on FB. we were completely caught off guard by the response we got... it made a huge impact and people wanted to share it as they found it to be a very useful awareness tool. so, i thought it would be a good idea to post it here on my blog as well. 

a short back story of what happened before:

this attack came on very suddenly during our second office visit of the week with DR H. prior to this, i had been feeling "ok". in fact, the day before, we had spent the day on the beach at santa cruz. i had started a new anti-microbial treatment protocol 6 days earlier so a herx reaction was somewhat expected - however, no one was expecting what happened to happen. just before the tremors started, i began throwing up. i have been dealing with daily vomiting episodes for 19 months now, so barfing is not out of the ordinary for me however, there had been a steady increase in the vomiting in the week leading up to this and it was accompanied by nausea. the nausea is a new thing. the vomiting began at DR H's office. before i knew it, he was IN the bathroom with me. shortly thereafter, the tremors and twitches came on. i am grateful that i was with DR H when the tremors started. he was very caring and reassuring and immediately implemented medical interventions but i have to admit, i was a bit mortified to be barfing my guts out in front of him.

here's the video footage we shared on FB. it has taken me quite awhile to post it here. it was filmed on october 17 in our hotel room in california- it is but a brief glimpse into what is happening...i promise, there is no footage of barfing!

so what happened since the video was shot?

we are home from california and mainly, we are just taking it one day at time as my medical team tries to sort all this out. i saw a specialist at a local hospital just shortly after arriving back in canada. he was very lovely and he wanted to try and set up some treatment for me which he felt could be beneficial. we were shocked and so grateful to be offered help. we left that appointment feeling as if we'd just won the lottery! however, last week, i got the very disappointing news that this had fallen through. i do believe this doctor was very sincere in his desire to help but his hands are tied by red tape and bureaucracy. it is so difficult to have your hopes raised only to have them come tumbling down again. it is what it is, and i must just pick up my hope, tenderly brush it off and carry on. 

DR H has set up supportive IV therapies for me thru a local ND and has started me on meds to address adrenal issues. i have had 3 very mild and mini tremor attacks since getting home. i'm on very powerful anti-nausea medication which has helped with the nausea a bit but has not stopped the episodes of vomiting. i have lost 6 lbs since the video was shot. i am tired and weak and as a result, have been laying low but i am hanging in.  i would appreciate your prayers. please pray for wisdom for my docs as they sort out what happened and what is happening. please pray for me as i continue to battle on.  

EXPOSED - The filming of Ticked Off

so the airing of Ticked Off: They Mystery of Lyme Disease is a mere 2 days away now. 

the day before yesterday, i stumbled upon an archived journal entry about our first day of filming...it was a fully written entry - the pictures that went with the story were even uploaded but i never published it. 

why?
because by the end of that first day of filming, i was raw. 

the film crew were wonderful. they were respectful. they didn't overly pry. and we even shared a good many laughs. but every time you tell your story, a part of you re-lives the pain, the suffering, the abandonment, the rejection, the horror
and
that is hard.
really, really hard. 

i felt exposed. i felt vulnerable. and back then, i guess i just didn't have the gumption to make that all public.

and ok, honest to goodness, i will be completely transparent here - posting the story meant revealing i had (have) superficial worries about my hair and certain camera angles...and i have to admit, i was embarrassed to admit that.

i'm putting it out there now.
why not?
some of it is funny. at least i think so. some of it made me laugh when i read it.


november 29,2012 was the first day of what ended up being three days of filming.

just before we left for our appointments with DR H, the film crew came to our hotel.

the reason they came to the hotel was two-fold.
one to have a bit of a meet and greet.
the other to film us getting ready to drive to DR H's office. 
it was awkward. quiet. weird. unnerving.
suppose those feelings are to be expected when total strangers walk into your space, camera in tow and begin to capture your every move.

The Crew from Merit Motion Pictures

what does one do when a film crew is with you?
why, of course, the most important thing to do is to act natural...which naturally feels like about the most unnatural thing to do.

do you look at the camera? or not? do we talk? do we not? and if so, what on earth do we talk about? 
the weather? 
vomiting? 
colonics? 
ha ha.
for the most part, we all sat around in awkward silence.
the kids quietly played minecraft on the laptop.
the camera man zoomed in on them.
initially, they sat there stoically solemn.
then suddenly, they evolved into animated, amped up, hyperactive goofballs.
parker moved around the most he has in about 3 months. so much for representing the worst of what this disease can do. nothing like a little nervous energy to get one moving. 

natural? not remotely.
finally, the time to leave was upon us.
however, i needed to take my next dose of meds first.
i walked into our hotel kitchen.
camera guy follows.
sound guy too.
great.
they are behind me, i thought.
that means one thing.
a butt shot. any woman's worst nightmare.

i was still pre-occupied with that thought as i nervously poured a glass of water and retrieved my pills
suddenly a boom mike is dangling above my head.
great.
self consciously i gulped down a handful of pills.
move on to mixing the homeopathic tinctures i'm on.
drip. 
drip. 
drip. 
those were the longest 15 drops i've dispensed in my life.

finally, it was time to leave for DR Hs.

avery went to put on her shoes. 
the camera guy followed her, still filming.

she looked up at the camera.
cue eye roll.
cue melodramatic forehead slap.
cue exasperated sigh followed by,

"you're going to film me tying my shoes? are you serious? really? how is that newsworthy?" 

they then filmed us leaving the hotel. 
wanted to even capture us walking out of the door of our hotel room and getting into our vehicle.
just act natural. umm. yeah. okay.
it was the most awkward exit of our lives.
we marched out stiff as soldiers on parade.
hup, two, three, four, down the side walk towards the parking lot we woodenly marched.
kids in front. graham and i tailing behind.
camera filming us from behind.
("oh no, please, not another behind shot!" i silently screamed in my head)

at the corner of the hotel, the sidewalk separates into two walkways. we went down one, they whipped down the other, by-passing us so that they could now film our approach to the car. 

do you smile?
look somber?
i'm sure graham and the kids looked like deer caught in headlights
i, on the other hand, was just so grateful to not have a camera focused on my hind quarters, that i'm pretty sure i looked woozy with relief.

graham opened the car door for me.
like i've said, we were behaving in the most unusual manner.
off we zoomed to DR H's office
a 25 minute drive.
black suv in hot pursuit the entire time.
filming from behind
then
zooming up beside us camera hanging out the window

avery ducked every time they came along side of us.
the rest of us, sat stiffly in the car.
should we talk? 
do we just face forward? 
well, clearly, that would be advisable. 
after all, forward facing whilst operating a vehicle is a smart move.

speaking of forward facing...  
my hair was sprayed so stiff that even when i turned my head to the side, my hair remained forward facing.
no flowing locks here. 
no doubt about it, i had major helmet head going on.


beyond my coif being a fire hazard, i will admit the whole hair thing hit a bit of a frenzied crescendo in the week leading up to this. i should probably back track a bit here.
you may recall i am a newly minted blonde...having made the jump from living as a brunette for nearly a decade.

for the filming i was neither.

i was no longer brunette.
but
i was not a blonde
i was somewhere in that awkward in between stage.

i had begun the transformation in august 2012 - not knowing that we would be filmed for this only a mere 3 months down the road. 

going from black to blonde proved to be a long, somewhat terrifying process to undergo. it meant enduring the 'awkward day-glo orange' phase. 
naturally, i was in that day-glo phase when the cameras started rolling.

no. it was more like multiple shades of day-glo orange.
it was a virtual psychedelic rainbow of sunset hues.
sunsets are a thing of beauty...but they belong on the horizon not as a face framing halo.

in an effort to keep reflections on this experience authentic, i won't lie - despite the fact that i am a bit ashamed about it... in the week leading up to the filming, i will admit i had some minor major moments of freaking out over my hair.
i spent an inordinate amount of time pre-occupied with it. 
and visited 2 hairdressers. 
yup. 
two. 
much to my relief, the second hairdresser was able to tone it down.

embarrassed to expose that truth...yet, i'm betting some folks are still gaping at the above photo and will understand i had cause for angst... and several rounds of bleach. even my husband suggested i should "do something" with my hair.

DR H looking all spiffy

we finally arrived at DR Hs office.
much to my relief, he was there and fully prepared to appear on camera.
he'd clearly put effort into his appearance. those that know DR H will understand how completely uncharacteristic this is.

his clothes were ironed.
his hair was brushed.
i'd hazard a guess that it had even been recently trimmed.

clearly i'm not the only one who had thought about physical presentation... and he's a man. 
justifying myself here.

in the spirit of keeping it real, i might as well address the issue of clothing. or may i say, the minor wardrobe malfunction i am terrified may have been caught on camera. i must say that i tried on a few outfits before i picked out what i would wear. but in all honesty, i did not give my wardrobe choice a whole lot of thought...after all, the battle with my psychedelic hair color took up most of my energy.

so the clothing choice.
that i may come regret. 
in fact, i already have.

i wore jeans, a cardigan and scarf
pretty basic and neutral attire.

the entire crew piled into DR H's tiny exam room and filmed our appointments. 
DR H. me. parker. graham. and the 4 men tv crew. camera. boom mike.

the room got really warm really fast.

when it came time for my exam, i shed my cardigan and scarf. 
neurological work-ups are a bit of a work out in that they require movement. arms out. arms up. bend this way. bend that way. jump up. squat down. 

i was bending into a squat when it suddenly hit me
my jeans are a wee bit a whole lot lower than my natural waist line
panic washed over me in a nano second.

heaven help me, i think my underpants are showing!

somehow, every unflattering picture i've ever seen printed in grocery store tabloid magazine flashed through my shellacked head. i could barely focus on dr h's directions after that...

i was just thinking the worst was behind me, when DR H proceeded to give my belly a thorough palpitation and extensive exam.
my BARE belly.
OH LORDY.
i nearly died as the reality of the situation washed over me...there is a massive camera inches away from my gut.

i am an exposed specimen.
(the following day, i made them promise not to use that footage.)

after our appointments, they did a 30 some minute interview with DR H.

i have such gratitude for our doc...his wisdom, his dedication, his (stupid) sense of humor and his willingness to put himself out there. in his profession that is incredibly risky. i have no idea what they asked him. we had to sit in the iv clinic area of the office and were not privy to what was said. darn.

by the end of the day. i was hooped. we had spent just over 5 hours filming. TV stuff aside, it's a long day to begin with. our appointments with DR H are intense and require my full attention. it takes an inordinate amount of energy to remain focused and try to process all the stuff we cover.
add to that, a camera and 4 people shadowing you and it was entirely overwhelming.

once we got back to the hotel the stress of the day hit me. 
and hit me hard. 

panic and anxiety rolled over me and knocked the breath out of me.
my body was buzzing and my head was fuzzy.
my heart skipped beats in my chest
a surreal mirage of the day's events shifted into my mind's eye
they replayed in my head;
a never ending circuit looping thru my bleary mind

what have we gotten ourselves into?
i kept asking myself over and over
i don't want to do this.
it's too much. way too much.

why did we ever agree to do this?
i can't handle this.
i feel so completely exposed. 
i wanted to run and hide. 
i felt myself near the brink of total hysteria.

why did i ever agree to do this?
i threw the covers over my head.
a desperately futile attempt to shut it all out.
the continuous noise in my head just roared on.
i was absolutely reeling.

i felt the weight of the world on my shoulders.

i. feel. exposed. exponentially.

back to the present
so that was how i felt way back in november 2012
and 
i find i am nearing that state of mind again
and
how i felt then is how i feel today
the thoughts are back
haunting me late into slumberless nights

why did we do this?
because this isn't about us.
it's about so. much. more.
it's about saving lives and fighting for change.

i feel the weight of the world on my shoulders. our story is but a drop in the ocean that is wide and deep and overflowing with the suffering of lyme.

this i know.

we must keep telling our story
every. single. one. of us. 
we must raise our collective voices and tell our stories a thousand and one times over or however long it takes until change occurs.

until canadians can walk into any doctor's office, obtain a clinical diagnosis of lyme and be given adequate antibiotic treatment.

until canadians with chronic lyme are treated with compassion, dignity and respect and prescribed long term antibiotic treatment in their own country.

until there is a cure for chronic lyme.

we must tell our stories
until the truth about lyme prevails
and
the corruption is exposed

OFFICIAL TRAILER OF Ticked Off: The Mystery of Lyme Disease

this morning the official trailer of the documentary Ticked Off: The Mystery of Lyme Disease was released on the Nature of Things website. if you don't blink at all, you may just catch a glimpse of myself, graham, sparky and our doc, DR H....no Harrison tho'. (he's currently sulking in the corner)

i also want to say thank you to those of you who have already responded to this post and/or my email. we've heard it is even beginning to circulate through several school districts in our area. that is so important - as children are at greatest risk of contracting lyme. it is exciting for us to hear how far and wide you are spreading the news! thank you, it means so very, very much to us!

in some of the feedback i've received, two primary questions have been popping up in regards to viewing the documentary. i forwarded on those questions to the producer/publicist and they were quick to respond with some helpful answers! below are the questions which are followed by the answers the producer gave me!

Q1. Is there a way for folks in the USA to watch? 

A1. We don’t have a broadcaster in the USA yet, but hopefully will at some point. In the meantime though they can pre-order dvds by emailing info@meritmotionpictures.com

Q2. Some folks don't have PVRS and are not free to watch on Oct 10 - These folks are wondering if the documentary will be airing on any other already schedule dates/times? 

A2. The show will be able to be viewed on-line within Canada on the Nature Of Things website after show airs

keep spreading the news, friends!

TICKED OFF: The Mystery of Lyme Disease

it's official - the goertzen family is coming to CBC TV this fall...in one short week to be exact!

TICKED OFF: THE MYSTERY OF LYME DISEASE

Premieres Thursday, October 10, 2013 at 8PM (8:30PM NT)

on CBC-TVs The Nature of Things

Feel free to email me for PDF version of the press release
sngoertzen@gmail.com

last week, it was confirmed by the producer and executive producer of Merit Motion pictures that our family's story will be part of the upcoming documentary about Lyme in Canada. as you may or may not remember, we were filmed for this way back in november 2012. the film crew spent 3 days filming in our home and also filmed us in SF during one of our trips to see DR H. it has also been confirmed that their interview with DR H is in the documentary.

we suspect that our infamous dog, Harrison Phineaus Goertzen, may even be in the documentary. the entire film crew was enamored with him. in fact, the camera man spent a copious amount of time filming (and cuddling) our pooch. he did not cuddle any of us. none of them cuddled us. after all, they are professionals. given that Harrison is the strong, silent type, we're certainly curious to see how much actual air time he'll get.

friends, i am specifically asking for your help to spread the word of this documentary - and i am doing this knowing full well that i had a serious hair disaster 7 days before the filming took place and as a result had the spray-your-hair-into-submission kind of very fried, seriously brassy helmut head for the filming. trust me, there is no ego involved here. this is about saving lives. our family's primary objective in participating in the filming was to help spread awareness and educate the public in the hope that we can prevent other families from experiencing the horror of Chronic Lyme Disease. you can help us meet that objective by spreading the word to your friends and family. 

How is this relevant to your friends and family?

Because Lyme is the fastest spreading infectious disease in North America & the world and anyone, anywhere can contract it.

Please consider this - a few weeks ago, the US Center for Disease Control reported that 300,000 Americans PER YEAR contract Lyme. Canadian Scientists have predicted that 80% of Eastern and Western Canada will be living in areas at risk by 2020.

Sparky and DR H
no, nothing awkward about having your doctor examine you on camera

Still not convinced to ask others to tune in?

Please reconsider! Public awareness and education of this insidious disease is paramount. We believe the information in this documentary will save lives.

Here's a link to view a clip from the documentary. This clip features an interview with Dr Maureen McShane. Dr McShane is a Canadian physician that practices in New York so that she is able to treat Lyme patients. She 'gets' Lyme because she suffers from the disease herself.

 

http://www.cbc.ca/player/Shows/Shows/The+Nature+of+Things/Extras/ID/2408817950/

i'd really appreciate it if you could help us spread the word. you can email me at sngoertzen@gmail.com to get your own PDF version of the press release... 

Sparky being interviewed 

there are several simple ways that you can help: 

first, post about it on facebook. share a link to this blog post on facebook.

second, email the press release to friends and family

third, print off copies of the release and post it around your neighborhood - eg, library, pet stores, vet office, community centers, health food stores, etc.

fourth, email copies of the press release to your MLA and MP. they need to be made aware that Lyme is a growing national health crisis and a real threat to ALL Canadians. it needs to be on their radar. 

please be sure to tune in or set your PVR to CBC on Thursday, Oct 10 at 8PM!