HAVE LYME? WILL TRAVEL.

have lyme?
will travel

on monday, we'll be leaving for SF to see DR H again.
again.
again.
again.
fly away

i'm tired of the traveling.

it's gotten old
even the thrill of target and ross have lost their lure
i just want to stay home
i just want it to all go away.

i know what the drill is
we've done it so often and for so long now that i could probably do it with my eyes closed -
but
i'm tired of "commuting" to see my doctor
ugh.

i'm tired of packing up copious amounts of IV meds - enough to fill an entire suitcase. i'm tired of navigating thru airports with a wheelchair. i'm tired of dealing with border patrols and airport security. i'm tired of what traveling will cost me -financially. emotionally. physically. i'm tired of creative hotel room cooking - plastic cutlery, microwaveable meals and coffee pot porridge.

i'm tired of traveling
i'm exhausted at the thought
and
i'm tired of my passport and nexus card being medically necessary.

i want to fly away for a holiday not for a doctor's appointment
i want to go to california for the sun not for my sons
i want to leave my heart in SF not my wallet
i want to go on a holiday to simply escape life's strife - not in order to save my life.

and
i'm not alone
oh, so not alone

have lyme?
will travel.

welcome to the reality of being a medical pariah.
welcome to the reality of having a "rare" disease.
rare? my ass.
but
reality? a pain in the ass.

our situation is only rare in that we are ABLE to commute south of the border and haven't had to move down there. the reality is that we have met many canadians on our travels down to the USA. none were down there on vacation. all were there for LD treatment. some, like us, are able to commute. some have had to move there. on past trips, we've traveled together, we've randomly bumped into some in the airport, we've met them in our doctor's office and we've even visited with several in their temporary homes.

this business of canadians with lyme having to head south for treatment has been described as a "mass exodus". i would hazard to say that that is not some gross over exaggeration. no. not at all. off the top of my head, i can name off 20 or so folks just from our immediate community and that i know personally. all of whom have been forced to seek treatment in the USA.

on several occasions, we've even had USA border guards ask us about this "mass exodus" when we mention the reason for our trip is lyme related.
we've had them ask,

"don't they treat that in canada?"
and
"wow, there's a whole bunch of you going across."
and
"you are the 3rd person TODAY that i've had come thru for that reason."
yes.
really.

this mass exodus by canadians to california specifically has resulted in what has recently been dubbed the "lyme leper colony" by david cubberley. david, who serves on the board of directors for the canlyme foundation, wrote a piece about this on his blog; the lyme disease debacle.

david has been an outspoken advocate for canadians with lyme for several years now. he is astoundingly articulate and a straight shooter who sheds light on the whole lyme debacle with respectful clarity. we are so fortunate to have him advocating on behalf of all canadians suffering from lyme disease. he was recently interviewed on CBC radio - specifically discussing the lyme leper topic. you can listen by clicking on this link. the interview with david starts at the 13:05 mark and is about 8 minutes long. please take the time to listen.

i've gotten david's permission to re-print some of his last post, "visiting canada's lyme leper colony in SF" here on my blog. but i would encourage you to go to his site and read the post in it's entirety. part of the post is about one family's battle in particular. please be in prayer for this family. please be informed. please be in prayer for us as we travel. please be in prayer for this lyme leper community. those are not faceless people - they are my friends. peter. lisa. marie. alison. deb. heidi. alex. carolyn. nicole. chris. kim. kent. lisa. julia. oliver. marilyn. christine. riley. parker. taylor. and those are just the few that i know personally. and they could just as easily be one of you. lyme is not rare. it is real. it is here and everyone is at risk. be aware. get educated. avoid lyme. something has got to give in canada. i'm tired of travel.

the following is the excerpt from david cubberley's blog post entitled

"visiting canada's lyme leper colony in san francisco".

"San Francisco attracts Canada’s Lyme-lepers because it’s home to some of the most Lyme-literate physicians in America. Since there’s no local knowledge available in Canada (that is, clinical experience with Lyme sufficient to discern its patterns) and since access to antibiotics for chronic infection is taboo, you’re forced to choose: either go where there’s clinical skill and access to antibiotics, or just watch your loved one deteriorate painfully, and possibly even die.

I’ve noted the tragic irony of this before: Canadian families who revere our healthcare system are forced to uproot, go to a foreign country and buy ‘medically necessary’ care. All this because Canada has adopted American ‘practice guidelines’ that ‘manage care’ by shedding responsibility for as many sick insurees as possible. The guidelines do this by means of manipulated disease definitions.

If this sounds diabolical – well, there are elements of that about it. The algorithm (or formula) that determines whether a Canadian test detects Lyme or not is loaded against showing it (mis-primed, thresholds set too high, etc). So is the algorithm rigidly restricting antibiotic therapy to a short course for the few cases ‘proven’ by the faulty two-stage test (about 150 in all of tick-ridden Canada)

Algorithmic medical care is machine-medicine at its worst. It trumps the clinician’s and the patient’s roles in detecting and diagnosing disease, and together deciding the best course of therapy. It denies the patient the knowledge that there exist two distinct sets of medical guidelines for Lyme and co-infections – one relying on the faulty test that nearly never finds it, another based on clinical diagnosis from symptoms and ongoing treatment. It arbitrarily replaces complexity with unwarranted certainties.

This needless, inhumane denial of diagnosis and treatment in Canada victimizes families at every level. Those with resources to liquidate are ‘free’ to bankrupt themselves buying care state-side; those without are ‘free’ to suffer in silence and lose their quality of life and independence.

Consider this reality: every day Lyme diagnoses are missed all across Canada, generating new victims who’ll ultimately be forced to seek treatment in a foreign country and pay out- of-pocket. Some of them will become so sick they’ll have to go and live there. Many simply won’t be able to afford that choice.

So long as the status quo prevails, there’ll be a steady flow of new recruits to the Lyme-leper colony – but this is a journey no publicly insured Canadian should ever have to make! Your taxes pay for medical care without regard for your ability to pay, whenever you need it and for as long as you need it. We’re all denied access to that care if we happen to contract tick-borne infection. We shouldn’t wait to get Lyme before coming to grips with that grim reality. We should Act Now to bring public health back to its mission of preventing and treating disease.

There are many good reasons to visit San Francisco.

Lyme disease should never be one of them."

THAT'S A "WRAP"!

avery's big little debut on TV has rapped and aside from getting hit in the head, a few technical difficulties and a knifing incident, i'd say it was a grand success.

oh my - such violence on a morning news program? sounds more like prime time TV rather than a morning talk show. ha ha. but now that i've peaked your curiousity (and in case you missed the titillating broadcast), here's a link so you too can see just exactly what i'm talking about:

RICHMOND SCHOOLYARD PROJECT

avery was missing for the first segment (we were late - big surprise) but she was there in time for the taping of the second segment and ended up getting asked if she would say a line. she was ALL OVER THAT!


even though the show was live - there were little intervals of time between segments so she got to practice her big line quick before she had to deliver it live. the mic wasn't working properly during the little practice and so the reporter tried fiddling with it and ended up bonking her in the head with it. naturally, she responded with all the drama of a seasoned starlet...

the pre-air bonk...

then when it came time to deliver her big line live, she AD-LIBBED;

instead of saying;

"your watching breakfast television, stay tuned..."

she ad libbed

"you're watching breakfast television, don't go anywhere!"

avery's ad lib caught the reporter a bit off guard - if you look closely at the above photo you can see it in his eyes. they are just ever so slightly bugging out of his head. ha ha! to top it off, after that, everytime he safely signed off each segment himself, she would pipe up with a...

"hey, that's MY line!"

let me tell you, given that avery and her BFF Fiona were in this production together that reporter actually has no idea the endless possibilities of smarty pants remarks he sidestepped. those 2 girls never run dry on wit. fiona's mom and i would not have been surprised had those 2 turned it into an episode of 'i love lucy'.

sure looks like they were up to something!

i'm so glad they could be in it together. what a fun memory for them to share. and thank you to fiona's mom, tammy, who did such an amazing job of capturing so many of these incredible photos.

avery and fiona aka lucy and ethel

these two already have a stockpile of memories - they've been a lucy and ethel duo since they were 2.5 and in preschool together. way back then, they were already regailing their preschool teacher with a steady flow of hilarious subject matter.

avery was absolutely in her element and had a grand time. altho' the little boy who sliced his finger during the potato prep segment probably didn't have such a good time. poor little guy cut his finger - if you watch carefully during that segment, towards the end of it, to the left of your screen, you'll see mr lai and the boy quietly sliding off camera - that's because the poor child was bleeding from his wound. (he's fine - it was just minor cut and was quickly bandaged up.) i guess that's what you'd call a "wrap".

btw, those potatoes - they were absolutely divine.

APRIL SHOWERS & MAY FLOWERS

april showers bring may flowers!

the last bit of april and this first bit of may has been a whirlwind of noteworthy events - both worldwide and in our own little world.
most recently on the world stage, of course, is the demise of bin laden and the conservative party gaining majority government here in canada.
crazy.
hard to believe.
that's all i have to say about either.

may is also lyme disease awareness month.
good.
in the weeks to come, i'll have a lot to say about that...

aforementioned aside, there has been many more events crammed into the end of april and beginning of may.if i may, here's a bit of a recap:

after enjoying about 10 days of relatively decent health (minus a few mashed toes) i capped off the end of the month with a royally massive herx which was a royal pain in the butt. once again, i found myself spending a lot of time barfing, sitting on the porcelain throne and reaching for the ativan.

royally unimpressed

my herx happened to coincide with the royal wedding and the ensuing media blitz incurred by it. there was no getting away from it...but i admit, i probably would've watched it even if i wasn't laid up on the couch herxing. the wedding was nice and they make a very cute couple but i'm pretty much over it now. fortunately, i'm over my herx too. it got pretty rough again but it was relatively short-lived.

speaking of the need for ativan, how about that game 7? oh my! gimme a woot! woot! the vancouver canucks finally defeated the blackhawks. and now we're into round 2 of what is proving to be some major nail biting playoff hockey.
and
what's with the double overtime?!
oy!

of course, hockey also conjures up images of toothlessness.


and my daughter has had a gap toothed smile for 6 years. her front tooth has finally started to come in! this is a huge deal - she hasn't had a front tooth since her baby tooth was knocked out when she was 2.

on april 30th, taylor's girlfriend mara got baptized! what a joyful and blessed way to end off april! we're so proud of you mara! over this past year, we've seen such growth and maturing of your faith. it is evident that you love jesus. we love you.

april "showers"...

mara and pastor mark

...bring may flowers & avery's birthday!




on may 2 we celebrated avery's 8th birthday. wow. my baby is 8.

i've been working on a post (hopefully be up shortly) about my girl. she has an infectious joy, incredible compassion, a sensitive heart and is wickedly hilarious. H-I-L-A-R-I-O-U-S! oh my, the things my daughter has to say! her sense of humor is unbridled and unedited.

speaking of unedited, avery will be on a LIVE TV SHOW tomorrow morning - tomorrow being wednesday, may 4.
and yes, that's right, the show will air LIVE! along with several of her classmates, she will be appearing on the Breakfast Television show on City TV - channel 13 or HDTV channel 214. (on shaw)
the segments she will be in will air at 6:46am, 7:08am, 7:47am and 8:25am (just to be exact!).

i'm not sure if the show can be watched on line - but here is the website for the show:
breakfast television vancouver

and what per chance is the show about?
wait for it...
wait for it...

it's about gardening and cooking!!
given my lack of skill in either department, it is pretty ironic that my daughter will be on TV DEMONSTRATING how to do both. wow.

avery is super excited to do this. we are excited for her. when i told her that she had been picked to be one of the students on the show, she jumped up and down and shrieked, "awesome!"
then she paused,
held up her finger,
cocked her head to the side,
arched her eyebrows,
looked out of the corner of her eye,
and quipped,
"ummmm, they're not going to make me wear an apron are they?"


ha ha
atta girl!

like i said, the show will air LIVE.

be sure to tune in, it could be very entertaining.