THE ITCHY ANSWER

OK. let me lead off by saying that detailed accounts of our experience with the documentary film crew are in the works. i jotted down notes throughout so i wouldn't forget the events. which is a good thing because we actually ended up filming for 3 days. one day in california and two days in our home. it was a whirlwind and much of it passed in a blur of emotions...i needed some "down" time to process it all before i could even attempt to formulate my random thoughts into a cohesive and entertaining read. however, 'down' time is hard to come by - even on a 'good' week. and the week or so since our return things have hardly been "good".

actually, it would be more accurate to say that it has NOT been ALL bad. indeed, we had a wonderful but itchy answer to prayer in the week since our return.

i am happy to share that our (and your) prayers for an MRI for parker were answered. it took a major fight and much perseverance but i am happy to share that parker has HAD his MRI. praise God! 

sparky about to get his much prayed for MRI

let me break it down...
first we asked for prayer that he get an MRI quickly. not an easy thing to come by in canada. the waits are notoriously long. add to that the complication of getting one for a pediatric patient OUTSIDE of the children's hospital but WITHIN the public health care added an extra dimension of challenge to the mix. the request was made in middle of October. the first referral to hospital in our city was rejected. they did not do pediatric MRI. this delayed even a processing of our doctor's referral. this meant another round of calls to find a hospital that would do one.

finally, one was found. however, because of the aforementioned delays, the referral was not sent in until the beginning of November. it took another week and more phone calls for it to be processed and an MRI to be scheduled. the date of Jan 11 was a relatively short wait. but we still felt that that was not short enough. we continued to request prayer and pray for a shorter wait. two days later, we were re-scheduled for dec 11.

we were thankful... but we continued to pray that this new date would be rescinded and we'd get in even earlier. during all of this, parker's vision issues were getting progressively worse. knowing the possibilities of why this could be happening had us anxious to get an MRI done ASAP. so yes, even the dec 11 date for an MRI (which at that point was a mere 4 weeks away) felt way too long a wait.

then, of all things, the hospital had a flood and as a result, the MRI machine was destroyed. who could ever anticipate such a thing? i could but couldn't believe it!! that kind of stuff just happens to us - the most bizarre roadblocks just pop up in our life and keep the road challenging to navigate.

parker's MRI was cancelled and no alternate date was given. at all. this brings us all the way up to when we left for california (nov 27). we were even making calls in the airport, scrambling to find yet another hospital. just before we boarded our flight, graham was able to find a hospital. he called our doctor's office and asked them to fax the referral to this new hospital. i might add here, that it is not normally the patient's job to find a place for their doctor to send an MRI referral. however, parker has fallen thru the cracks so many times that we have found it is necessary take on many roles when it comes to negotiating and advocating within the system.

upon our return from california (dec 1) we learned the MRI had been scheduled for april 2013. this was terribly upsetting news. again, we made more phone calls. 

it was stressful. 
it was draining. 
it was uber frustrating.
it was physically and mentally exhausting to persist in holding those in the medical profession accountable to appropriate and timely follow through. 
however, 
in the back of my mind,
i somehow dared to consider something impossible...
what if, after all of this, he actually ended up getting his MRI earlier then the dec 11 date? hadn't we been praying that that date would be rescinded?  i certainly hadn't prayed for a flood but what if... (i assume no responsibility for it occuring)

i had a conversation with the Lord about it. albeit, a slightly perturbed one. 

"ok Lord, along with a multitude of folks, we've been praying that parker's MRI date would be moved up from dec 11. today, is dec 4 and we now have a scheduled date for april. what are you up to?"

on dec 5 the hosptial called and told us they had an opening for parker to get his MRI on december 7th!

this answer to prayer made me laugh and cry.... even as i write this, it still makes me well up with tears.

unfortunately it has made parker itch like mad.

the rash begins

5 hours after having the MRI, parker had a (pretty severe) allergic reaction to the contrast dye used in the MRI. at least this was not an unforeseen speed bump, we had anticipated this. two reasons; 

first, he had a reaction (but milder one) to xray dye 2 years ago. a past reaction tends to mean you'll react in the future - and those reactions can become progressively worse. 

second, he has a Mast cell disorder called Mast Cell Activation Disease (MCAD). This disorder puts him at a greater risk and predisposes him to allergic reactions and anaphylactic shock. (you can read about MCAD here and here - this post will be too long if i go into a detailed explanation of this disorder.) 

this disorder is not curative but there is treatment that helps to control the disease. the treatment protocal includes daily doses of multiple anti-histamines and other medications that are "mast cell stabilizers". in addition to his standard doses, parker was pre-medicated for the MRI. meaning, his doses were doubled up in an effort to stem off a severe reaction. we continued to medicate him with these increased doses and added in another anti-histamine afterward

we are thankful he did not have an anaphylactic episode. we suspect that the medications stemmed that reaction however, he has been COVERED from head to toe in hives and an itchy, angry rash for nearly a week now. it is a horrible reaction and has flared all of his other MCAD symptoms plus his lyme; he is continuing to endure severe bone and joint pain, fatigue, bouts of diarrhea  nerve pain, flushing, mild shortness of breath, shaking chills.

sparky's back

about 18 hours after it started, it seemed to be going away however in short order, it returned with a vengeance. this was very disconcerting. with MCAD, there is always the fear of anaphylaxis. most folks are familiar with the more common or typical anaphylactic reaction that usually takes place within minutes of an exposure to an allergen. MCAD and/or systemic mastocytosis patients can have an anaphylactic reaction take place days after the initial exposure. based on that and the fact that parker was maxed out at highest doses of multiple medications and the rash was progressing and continuing to get worse, we finally made a visit to the ER on sunday afternoon.

Sparky at ER

going to the ER was not a decision we made lightly. going to ANY hospital is the last thing we want to do. we still live with the fear that what children's hospital did (threaten to call in Child Protection Services & MCFD in an effort to remove parker from our care) will happen. i cannot explain what it is like to live with the fear that taking your child to the hospital for medical help feels unsafe and dangerous.

graham told me afterward that he was on high alert and in "fight or flight mode" the entire time we were in the ER. i was blessedly not as stressed about it. MCAD is a "recognized disease" in canada (DR H, our USA doc originally diagnosed it but we are now seeing a canadian allergist/immunologist for treatment of it) that being said, it falls under the umbrella of Mastocytosis which is classified as an "orphan disease" meaning it is a rare condition. therefore the ER Doc did not know a whole lot about it. he was fairly dismissive of us because parker had no respiratory issues. the ER Doc did tell us that prednisone (a steroid) is some times used to curtail an allergic reaction but he felt that use of that was a decision that was best left up to parker's immunologist. fair enough, i suppose. 

Sparky's arm - 4 days after it started

i know that prednisone is often used as a last resort to treat MCAD patients. however it is contraindicted when one has lyme. in fact, steroids and lyme can be a lethal combo. it is not a treatment we would implement lightly and certainly didn't want to face a decision about using it unless we had spoken with DR H first. so, even thought we felt like the ER doc could have done more, we are glad that we felt the need to fly under the radar whilst in hospital. biting our tongue rather than pushing for immediate help probably kept us from having to make a decision about the use of steroids and that would be a precarious position to be in.

we left the ER with instructions to follow up with parker's immunologist. which we have tried to do. this has proven to be a very upsetting endeavor.  we are not exactly happy with this doc. furious is more accurate. we do not have an emergency contact number for him. but we have been leaving messages at his office since Sunday. it is now wednesday and we have not had a response. i am absolutely bowled over by this negligence. 

sometimes i really struggle with the feeling that my kid ALWAYS falls through the cracks or worse, has been kicked to the curb by many doctors. 
why don't they freaking care?
i don't know why i still seek or need that validation from the mainstream canadian medical community. when i get fixated on that, it is easy to overlook the fact that we do have doctors that are working on parker's behalf. furthermore, they often go above and beyond the call of duty.

even the soles of his feet and palms of his hands are covered

we contacted all 3 of parker's lyme literate docs. DR D and DR H responded within hours. DR C got back to us - even tho' his office was closed and it was his day off. yes, our sparky boy is in good hands. that's a good thing because he is a very sick kid.

Getting IV support at DR C's office

 we are implementing the treatment protocals that DR H and DR D prescribed. DR C is assisting us with this. these will be started today (wednesday) at DR C's office. if parker's rash has not improved by friday than he will have to start a short course of prednisone. it is DR H that made that treatment recommendation. he has (already) prescribed it. we are scared to put parker on predisone but trust DR H's expertise in navigating this type of tricky medical decision. we would not want it any other way. 

so, we have til friday for things to turn around.
for the rash to get better.
for the itch to stop

i pray that they do.

after all, friday also happens to be parker's birthday. 
and it's a big one.
thirteen.
i'd love for him to have an itch-free day.
becoming teenager is hard enough. 

ROAD LESS TRAVELLED

well, our travel day got off to an eventful start.

do we ever do anything drama free? simple? easy? uncomplicated?
umm. no.
trouble seems to follow us.
today, was no exception.

our flight to SF was delayed by 3 hours. i nearly had my nexus pass revoked and was almost fined $300 at customs because i forgot to declare my rice cakes.

is it any wonder that the primary issue i work on in therapy is de-bunking the myth that "NOTHING is every easy" and "WHY is EVERYTHING ALWAYS complicated?" and "EVERYTHING ALWAYS goes wrong." sure it feels like that a lot of the time but those are totally self-defeating mantras and they are not true. but, honestly, how do i overcome those lies when i keep running in to roadblocks that reinforce them?!

i started writing this post in the airport but decided to wait to publish it until we had actually arrived safe and sound in our hotel room. aside from the fear that something else would happen, i had serious doubts that i would be still be of sound mind by the time we landed at our hotel...even if no other unforeseen incident occurred.

but sure enough, we encountered 2 more slight hiccups before we safely landed in SF.

at the boarding gate, just as the flight attendant was checking our tickets avery turned around and shrieked, 

"oh no, mom, did you remember to bring the GUN?"
i kid you not.
time stood still.
the word "gun" hung heavy in the air; 
it shrilly reverberated in my ears like an announcement on a cheap PA system
i froze. mouth gaping. heart pounding in my ears.

"avery! i don't think i heard you... but don't repeat yourself!" i squawked... a deer caught in headlights.

"i meant GUM! GUM! Did you remember to get GUM?" she whispered, sparkling eyes wide with surprise

this flight has aged me exponentially.

we boarded the plane.
i had just sunk into my seat and was in the process of heaving a sigh of relief...when avery suddenly shrieked,

"MOM, MOM, i'm getting a nose bleed."

sure enough.
nice gusher.

the rest of the flight was without incident. 
or at least, i think so.
if there was - i didn't see it.
i closed my eyes and didn't open them again until we landed.
ignorance is bliss.


even with all of the hiccups, i am grateful for this flight. somehow amidst all the delays, complications and stress of it, it is a blessed flight. blessed? yes. the cost of this flight was covered by air miles donated by a good friend. he also has lyme, must travel out of country for treatment but still donated his air miles to us. and a young family, used air miles to secure and pay for a car rental for us. i won't lie, we held our breath until we had secured the keys to the vehicle... and, most important of all, it was a massive car boat. car boat rentals are as legendary and as big a part of our SF trips as DR H and In-n-Out Burger are. we were thrilled it was a true to form car boat. the kids fit perfectly in the trunk. graham and i enjoyed a nice, quiet ride to the hotel. kidding. 

we are forever being amazed at how folks allow God to use them to bless us. it is humbling. this road is hard, painful, challenging and yes, a lot of the time, it feels like EVERYTHING is going wrong and this nightmare will NEVER end...yet, blessings are undeniably intertwined through out this road we travel. they serve as the shimmering beacons of light...and when i focus on the hope, faith and love they represent, their sheen outshines the darkest parts of this journey. yes, the blessings are many. THAT is truth. my heart believes that. it is the journey from heart to mind that can get a little tricky - the roadblocks along the way can sidetrack me from the standing in the truth.

speaking of roadblocks...one last thing. 
this has nothing to do with air travel
but it has everything to do with delays and complications. 

the day before we left for SF, we received a phone call from the hospital where parker's MRI is scheduled for dec 11. the hospital was calling to CANCEL the appointment because they had a flood.

i kid you not.

no back up plan was offered. the situation is complicated as this is the only hospital that does MRI's on children - aside from children's hospital - which we do not feel is a safe option. 

this means we may now need to incur the cost of paying for a private MRI.

it is ridiculous. parker's MRI is marked as URGENT. suspected encephalitis is on the requisition. 

please be in prayer for this.
even as we sat in the airport awaiting our flight, we were making phone calls to try and get this sorted out.
it shouldn't be so hard.
really.

we had such trouble securing this MRI appointment to begin with
and then a flood happens?
what are the chances?
for some reason, God continues to allow us to walk the road less travelled. 
at the moment, my mind is semi-panicked over the details
but i choose to believe God will work this one out too.
after all,
he ALWAYS does

NATURE OF THINGS

i have some exciting news to share!

there is a documentary about Lyme in Canada in the works! Merit Motion pictures is shooting the documentary for CBC's The Nature of Things with David Suzuki. isn't that just super?

the documentary will air on The Nature of Things in Fall 2013.

back in early spring, parker had come to us and said that he wanted his voice to be heard and his story to be told. then a few months later, i was contacted by one of the producers from the Nature of Things and the opportunity for parker's story to be told fell into our lap. at that time, they were just starting to research Lyme disease... and were quickly learning that the scope of the lyme issue is huge and very multifaceted. at that point, they were considering addressing how global warming is impacting the spread of ticks in canada and how this has dramatically increased the risk factors for canadians and how the government and medical profession is woefully unprepared to handle this alarming and growing epidemic.

they wanted to feature one or two families that had children whom have been impacted with lyme as part of their documentary. our name had been forwarded to them. by the time the producer contacted me, i was pretty surprised by how much of our story she already knew. apparently, prior to contacting us, she had read a fair bit of my blog.

the story that had caught her attention was the one about harrison being treated for lyme this past spring. (read here - bittersweet juxtaposition)

so yes, the dog has earned us an appearance on national tv.

he's referring to himself as our agent now
and trying to collect fees.

i've told him when he starts picking up his own poop, then he'll be in a position to negotiate.

anyhow, back to the nature of this post...contrary to what he thinks, this is not about the dog.

last week, i spoke with another producer and the director of the Lyme documentary and things are moving full steam ahead. over the past few months, they have been all over canada and the usa interviewing many lymies, scientists and lyme doctors. they even sent a crew to the ILADS conference in Boston. this is a huge conference and ILADS is the medical society that focuses on the latest in lyme research and trains doctors on how to treat lyme. the crew also spent a fair amount of time back east in Manitoba. they interviewed patients there and our canadian lyme hero, dr ernie murakami. this is the doc who originally diagnosed me and treated me briefly before he was forced to retire his license. (read about that here) dr murakami is a remarkable person and we all love him dearly.


this coming week, the crew and director from merit motion pictures will be interviewing our family in our home as well as filming us during our upcoming trip to SF to see DR H. we fly to SF on wednesday (nov 28)and have appointments with DR H this thursday (nov 29) and the film crew will be there to capture it all. oh boy. we are very excited that DR H has agreed to be interviewed. this is a huge deal. i am quite nervous that he will have second thoughts and back out at the last minute. pray that he doesn't! there is such significance in him being interviewed. it is one thing for us to tell viewers how sick we were/are but there is a ton more credibility attached to our experience when it is backed up the treating physician. additionally, having him weigh in on the lyme issue is so important as the medical opinion of non-lyme doctors is sure to be represented. 

david suzuki is a well respected and renowned environmentalist. i believe he is very influential and for him to be 'on board' with shedding light on Lyme disease is a remarkable platform. we are so grateful to be given the opportunity to share our story. we are excited but very nervous too! please pray that i can speak articulately and effectively and wisely communicate the issues at hand. i want to tell our story in a way that will spark awareness of lyme and leads to the recognition of lyme in canada and ultimately sheds light on the plight of thousands of patients in canada that are suffering...we are but one in a sea of faces in desperate need of change. 

filming will take place in SF (our hotel and DR H's office) this thursday. 
we will arrive home on saturday (dec 1) and the film crew will spend sunday and monday (dec 2 & 3) in our home. many thanks to my friend maureen who is donating her time and cleaning skills to getting my home camera ready. 

I *THINK*

parker continues to be ill. 

thankfully, we *think* the actual decent has been halted. we even *think* he may be on his way up. 

this means his pain and fatigue are no longer getting worse. he still sleeps late into the day and spends most of the day in bed and he is still in a boatload of pain. yet, the high intensity attacks (where he has to crawl to get around) are not happening as frequently nor are they getting worse. 

i type *think* because things here change in the blink of an eye. every time we *think* things are looking up, he has another flare and we find ourselves tumbling back down into another dark hole. 

last weekend is a perfect example.

on saturday he was a bit perkier. he was in bed nearly the entire day but his pain was less intense and more manageable. he begged us to arrange for his cousin (same age) to come for a visit. his current relapse and bed bound state started sept 20. that was the last time he spent any time out of the house or with kids his age. he has been far, far too ill to have even been able to tolerate company. i suppose the fact that he even felt "up" for a visit is an indication that there has been improvement. and that the visit actually happened should be viewed as monumental sign that, on some small scale, he is feeling a bit better.

the company and the copious amount of video gaming provided some much needed distraction. the visit helped with the loneliness factor too.  yet, interspersed between gaming, he'd quietly seek us out or curl up on the couch racked with pain. he'd rest, gather up strength, then will his body upright and put on a brave face. 
for what?  to shoot up the enemy on the screen or shoot the buzzer beater in an imaginary on-screen basketball game. 
to be with a friend. 
to do. 
to be. just for an hour or two.
imagine having to fight with all your might to just be a kid.
the desperation for that can drive the body for brief interludes.

yet, i know there is a point when the body cannot be willed to do - no matter how desperate - not even for the briefest of interludes. that has very much been parker's reality since sept 20. 

that visit occurred last weekend. 
we *thought* this was a sign that he might finally be turning a corner but in short order, everything intensely flared again. evenings tend to be the worst. they bring with them intensifying joint pain, shortness of breath, rages and faint-like episodes.

and so it goes. 

the last 72 hours have been better. 

we've managed to do a bit of school work. a very, very tiny bit. (i'm home schooling him again this year) since mid-october, school has been a futile endeavour. this has been incredibly disheartening. prior to this relapse, he had been plowing through an incredible amount of work each day. it took an enormous amount of energy and perseverance on his part but his ability to *think*, process and recall material day to day had improved by leaps and bounds since we wrapped up school late last spring. to "lose" all of that again has been very discouraging. 

he got out of the house twice this weekend. short trips. but he got out. aside from doctor's appointments, he'd only been out of the house once since sept 20. 

he's back to harassing and teasing his sister.
we *think* that is a good sign.

yet, even as i write this, i know that things could spiral downward again.
it's 12:30pm and he's still not awake.
i don't know what today will hold. i suppose none of us really do.
but i hope today will be better and tomorrow and the next and so on and so on.

i *think* he may truly be crawling his way out of this massive relapse because we are finally treating him for the cause.
and the cause?
multiple viral infections.

the diagnosis based on a multitude of lab tests
and
a thorough exam by DR D (seattle doc).
(we took him down to seattle to see her about 10 days ago.)

long drive to seattle

DR D prescribed anti-virals
he's been on those meds now just over a week.

we *think* that this is helping.
we hope.
always we hope.

unfortunately, his eyes (the nystagmus) has gotten worse.

the viral issues are just part of the puzzle. we *think* they are responsible for this landslide relapse. but as far as we know the nystagmus is a separate issue. several doctors have been consulted and they do not believe that viral issues cause nystagmus. google says differently. but google agrees that viral issues are 1 of 3 causes. none of the other causes are things one wants to *think* about. 

i *think* it'll be okay.
our doctors *think* an MRI is absolutely necessary but they *think* it'll be okay.
MRI has been scheduled for dec 11.

but it's getting worse.

he was seen by an optometrist on friday. 
the optometrist *thinks* there is definitely something wrong.
he referred us to a neuro-opthamologist.
that appointment is scheduled for dec 27.

here's what i *think*
i *think* that the wait for those appointments feels like an eternity. we're on cancellation lists and hope that we won't have to wait until then.

i, also, know that i *thought* he needed to have an MRI before the nystagmus occurred.


then, a few weeks later, the nystagmus presented
and
this sudden landslide relapse began

and
it's earned us an urgent referral for an MRI.
and
yes, dec 11 is considered an "urgent" date

i am thankful for that.

i'm sure you are *thinking*, "hold up, what? you mean you are saying you *thought* he needed an MRI prior to the relapse and nystagmus?"
yup.
why did i *think* that? 

just before the nystagmus started, our GP noted that parker had lymphocytosis (elevated b cells)
he didn't *think* this was particularly concerning
it is reasonable to assess that the counts are out because of lyme (and viral issues)
however, 
we saw an immunologist 
who *thought* this warranted further investigation
he ordered specialized labs
and
those came back abnormal

i spoke with the immunologist this past week
he does not know what they mean 
and
has had to consult a pediatric immunologist

waiting to hear back on that
but
he thought that an MRI was definitely needed

i *think* it will all be ok
but
quite frankly, i don't know what to *think* anymore

i don't know why i had that gut instinct about him needing an MRI in the first place. i don't know if that feeling was based on fear or an actual intuitive sense that something, in addition to lyme, is going on.

i *think* i can't *over think* this
i *think* it'll be ok
i *think* i have to *think* that to get thru today

WE CAN DO HARD THINGS

i know there has been an extended absence since my last post. and i certainly dislike popping in finally with a "hi there, things stink big time right now" but that is the truth. we've hit 'crisis mode' again and we could use an extra dose of prayers and support. 

over the last 3 weeks, parker has had a significant relapse.

at the end of september, he developed a type of nystagmus that is indicative of central nervous system dysfunction. this was a sudden onset. it is a new symptom. when the nystagmus first started it was only present in his central field of vision. it is now present in all fields of vision and he can no longer track side to side or up and down. his eyes bounce or dance so rapidly up and down and side to side, they appear to be rotating. it is very upsetting and worrisome to see.

our docs have been trying to trouble shoot what the cause is and have tried numerous interventions. they've addressed and treated all the obvious causes

neurotoxity. check. 
vitamin deficiency. check.
re-adjust meds. check.
medication side effects. check.
standard labs done. check. 

despite their best efforts, the nystagmus remains "unexplainable" and has gotten progressively worse along with an intensifying of his regular, run-of-the-mill symptoms...headaches, nausea, temperature dis-regulation, flushing, rages, insomnia, fatigue and most notably, his joint pain has returned with a vengeance. he is in agonizing pain again all day, every day. adding insult to injury, he will have sudden attacks of an intensifying of the pain. these episodes take unbearable to a whole new level. they come out of no where and leave him curled up in a ball writhing and moaning or screaming in pain.


his docs are worried. he is having countless investigative lab tests done to see if they can pinpoint the underlying cause of this sudden onset of nystagmus and his rapid decline. his GP has ordered an MRI. we are praying the referral will be fast tracked through the system and scheduled ASAP. 

parker says he feels as bad as he did when he first got sick 3 years ago.
that is an inconceivable place to be.

3 years ago, parker came home from his first day of school "sick". within 6 weeks, he was in a wheelchair. nothing could have prepared us for the horror that was to come. 

i have a vivid recollection of when parker began to lose control of his legs. he was walking down the school hall way and his legs just kept giving out from under him. he had a dramatic limp and then every few steps, his legs would buckle and he'd fall to the floor or grip the walls to steady himself and after a few moments, he would continue to systematically plod down the hall to his classroom...a tremoring limp, a shaky step, then stumble to his knees, and then the whole cycle would repeat one painstaking step at a time. it was a disturbing and terrifying sight. i remember his teacher, who was walking down the hall with us, suddenly grasping my arm and with tears in her eyes and a catch in throat whispering, "this is breaking my heart." yet, his bravery and determination were equally breathtaking. 

his deterioration happened at lightening speed. his pain crippling. in short order, he went from this limp walking, to crawling, to belly sliding to not being able to ambulate at all. he lost 15lbs, had dark under eye circles, rashes, migraines, nausea,and difficulty breathing. he developed full body tremors and night time incontinence. he had severe rages and his cognitive abilities ebbed away. his agony and suffering horrifying. it was as if he was being sucked into a vortex and we were screaming and stretching out our hands to snatch him as he fell from our grasp. his pain levels were so high, and we could do NOTHING to alleviate his pain and suffering. there was absolute desperation to find something to bring relief. 

pain meds.
IV narcotics.
injections.
ice packs.
topical ointments.
epsom salt baths.

the warm baths aggravated it (often do with lyme) there were many times, as he lay whimpering in the bath tub that i sat on the opposite side of the door, my back pressed against it, knees pulled up against my chest, fetal position, head in my hands and bawling my eyes out. the sounds coming from my son, my child were not even human sounding.

these painful memories flood back as vivid as the day they occurred. i write of it now, not out of some macabre sense of dredging up old pain or revisiting old haunts... no, it's quite the contrary. i look back on those memories and am stunned that we are still standing today. it is a horrific journey yet there is no way it was survivable without God's presence. 

i look back and remember the "yesterdays" that have once again become our "today"...in order to remind myself that He is here now. just as we have had to carry our son's broken body, God has carried us. He still does and because He sustains us, we have the strength to stand today.

we can do hard things. 

LIVE. LOVE. CROW.

i'm not sure how it began. or when exactly. this obsession with crows. i think it started as a joke. and now i collect them. and i'm not a collector. not at all. but i make an exception for crows.

they are scattered through out my home. my 3 favourites are prominently displayed on my fireplace mantel. 

i love crows. i don't know why. i can't explain it so i won't even try to. i read the new fad for this fall is bird prints. if there is a crow one to be had, i'll be the first to buy into that fad. ohhhh, i can't wait.


i'm sure one day i'll be known as the 'crazy crow lady.' 
who knows... maybe i already am!

after all, i got crows for my birthday.

my dear friend and her precious daughters got me crow bling for my birthday! i nearly did a back flip when i saw them. spectacular.

yes, today is my birthday!
I AM HAPPY TO BE ALIVE. 
i haven't always felt that way.

I AM GRATEFUL TO BE ALIVE.
that is something to crow about.

SORTA SOARING

i thought it was high time i shared something on a more positive and lighter note.
here goes...


i am doing well.


isn't that wonderful?

i am still barfing daily. some days i vomit upwards of 8 times a day. yes, this is still ongoing since march 14. i have not had one barf free day yet. DR H started me on IV nutrition back in May and it helps so much with my energy levels, moods, resolved my nauseau and helped decrease the number of times i vomit on any given day. as long as i 'ingest' 4 nutritional IVs per week, i feel pretty darn good.


and that is very cool...and so is looking down and realizing your outfit color matches your iv line. hee hee.

it is good to know that they are helping but the pseudo nutrition is no way to live. it's extraordinarily expensive and my poor little veins are taking a beating and my arms are littered with "track marks". i recently tried to get by on as few as possible because the cost of them is killing us. as a result, my nausea returned, my vomiting increased and my energy plummeted.

my little tracks

it totally sucked to be dragging myself through the day again, however, i was still managing to function at an above average level for me. i was still hanging on to a sense of well being whilst holding on to a few dollars and cents, so i felt like i had struck a "do-able" balance.


until, that is, my blood counts went haywire.


the past 3 weeks, my blood work for my kidney function has made a significant jump. elevated numbers are not a good thing. it is concerning. we are not at 'freak out' levels yet but my docs are concerned and i am being closely monitored. which means more needle sticks. great.

my most recent lab work also revealed i've now developed neutropenia, low platelets, borderline anemia and various electrolytes are out of whack. all of those coupled with the kidney issues only began to be out of range when i cut back on the number of IVs i was doing. 

clearly, i absolutely need the IVs.

thankfully, my folks, an anonymous friend and a known friend have generously helped us cover costs so that i can receive all the IVs i need for the next 4 weeks. we expect this will result in a rapid improvement in my blood work. we are also trying to figure out a more affordable way to meet my body's needs. i continue to be amazed at how God provides for our financial needs. i'm still learning to keep my eyes solely focused on Him - even when the bank account is riddled in red and minus signs. i don't understand His ways - common sense would tells me it'd be a whole lot simpler for Him, and everyone involved, if He just stopped the vomiting and healed me now - however, He is GOD and His ways are better than my ways...even when they leave me scratching my head and saying, "really, Lord?"

i continue to be reactive to all fruits and vegetables. it is incredibly mystifying. none of my docs can figure that one out. what do i mean by reactive? oddly, this does not appear to be a contributing factor in my vomiting.  the symptoms i experience in relation to the ingestion of vegetables are not in my gut - they are systemic. 

i recently tried to see if this reactivity was persisting.

one evening, i ate some nachos - they had a sprinkling of chopped green peppers on them. i ate them partly because i was too lazy to pick them off. but also as a test, per say. you see, lyme symptoms strike in such unpredictable patterns that sometimes it is difficult - even entirely impossible - to know what it was or is that triggered a sudden onslaught of symptoms. however, i have been feeling so well that i was pretty sure i could finger the green peppers as the likely culprit should i suddenly be hit with a round of nasty symptoms. throwing caution to the wind and in the name of scientific curiousity, i quite literally bit the bullet. 

and within 2 hours, i was down for the count. i had a sudden on-set of profound fatigue - akin to being highly sedated. the following morning, i had joint pain and stiffness that made it difficult to get out of bed. my muscles ached as if i had just run a half-marathon. in fact, i spent most of the following 36 hours in bed. yes. it is that bad. i also had hives, dermagraphism, red-rimmed eyes and a puffy face. i felt toxic. i felt like i'd been run over by a produce truck. ha ha.

 

it is confounding and puzzling and the oddest of odd. if nothing else, at least, i am consistently odd.

oh wow, i can't believe i started this post with an "i'm doing well."!! 

rather ironic that what follows is a run down on dismal blood counts, kidney issues, vomiting, and a monologue on how veggies nearly render me comatose.

guess it's more like sorta, kinda, not really well type of well. yet that doesn't quite hit it on the head either because i honestly am enjoying a level of health that i haven't had since getting profoundly ill in 2006. i guess i could say i have a sense of well being...and despite challenges, i am sorta soaring. i am spreading my wings and testing them out.

it is profound to think that i have not been on any IV abx since LAST august. that is extraordinary. i am currently on oral abx for that pesky mycoplasma infection but i am not on any abx specific treatment for lyme. we still believe my barfing is related to the myco infection and not lyme. 

once we started treating my mycoplasma infection and DR H got me started on my nutritional IVS (in may), i experienced a prolonged state of well being. when my body is appropriately 'fed', my energy levels soar...as a result, i am sorta soaring. literally. at least i'd equate flying down the longest zip line in Canada to a sort of soaring. it feels good. real good.

soaring with my baby girl
RockRidge Canyon - June 2012

click here to experience the zip line via you tube.

WE'RE ALL IN THIS TOGETHER

in recent weeks, there has been a rise in the number of lymies that have reached out to me. these high volume surges happen from time to time. i'll go for a time where one or two emails find there way to my inbox and then, all of a sudden, there will be a huge influx of emails, messages or phone calls from lymies. what is a common thread among every conversation is despair and hopelessness, and a sense of betrayal, abandonment, and loneliness. 


some days, i'm so overwhelmed with my own pain and the unending needs pressing in on me, that despair and hopelessness reside in my own heart. they creep in like a thief in the night and catch me off guard - their suffocating presence is paralysing. it can bear down with such fierceness that i am hard pressed to provide any sort of support to those around me. i hate that. i don't want to be so caught up in my own grief, in my own brokenness that i fail to see outside of my own world. it's not about 'me'. it's about 'we'. 


there is so much pain and agony in this world and my heart is broken by it. even tho' i'm intimately acquainted with suffering, i often find myself at a loss on how to respond. what do i say? is there even anything that can be said? 


i know that sometimes a word of encouragement or even a verse fall short or fail to revive a battered heart. sometimes the desire to uplift comes across as a misguided attempt to explain life questions that simply have no answer. 


i know that sometimes a "hang in there", a "don't give up", a "keep fighting", or a "there is always hope" (there is, tho!), are not enough. however well intentioned, they can ricochet off the frailty of a wounded heart with a staccato emptiness. 


sometimes, there is nothing that can be said. words fail. sometimes, when there are no words to say, the world around you goes silent. i know. i've been there. i've experienced it first hand. silence in response to pain is perceived as abandonment. period. whether that is the reality or not. it hurts. it cuts deeply but i absolutely understand the propensity for it. i've often wondered why so few people respond or comment on my blog posts. on the few occasions i've had the nerve to ask, i've been told "i just don't know what to say."
i believe that. 
sometimes, i get emails and messages that leave me feeling that same way. they leave me speechless and aching and yearning for something to say to make someone feel better. yet, i feel like nothing i say will help. sometimes i feel ill equipped to handle it. sometimes, i am afraid of it. sometimes, i am paralysed by it. in those moments, i am tempted to be silent...or run away from it. it takes courage to wade into the muck and the mire of someone else's pain. after all, pain is messy. suffering is unsettling. it rattles us to our core and makes us question our world, our faith in God and our belief system. 


i live it and yet, it still rattles me. sometimes there really are no words but silence is never okay. sometimes the single most important thing we can say is, "i don't know what to say because what you are going through leaves me speechless." 


acknowledgement and validation speak volumes. 


yet, when the scope of an illness is so vast and far reaching, how do i even begin to acknowledge and validate the huge breadth of emotions it elicits? 

several days ago, i read the following post at a blog called "the ragamuffin saint". IT SAYS IT ALL. i wept when i read it. it is an eloquent expression of all that i hold in my heart. i'm posting the link to that post here. it is entitled, "to my chronically ill friends" but i think it applies to all of humanity. after all, pain and suffering are a universal experience. no one is immune to it. i encourage you to read it and then reach out to someone in your life that is hurting and share it with them. 


after all, we are all in this together. 


everyone, no matter their circumstance, needs to know that they are heard, understood, believed, visible and loved.


Michelle's Blog is called The Raggamuffin Saint 


Click here to read - To My Chronically Ill Friends

BITTERSWEET JUXTAPOSITION

i planned to immediately follow up part 1 of indoctrination of bc doctors with a part 2 - as there are a few more slides from that presentation that ought to be brought to the public's attention. i will get to that over the next little while, however the day after publishing that post an incredibly ironic event occurred.

the dog got a tick bite
and
the dog is now being treated for suspected lyme disease.


I KID YOU NOT.


while our public health authorities continue to deny the prevalance of lyme in BC, my dog picked up a tick in our friend's backyard in coquitlam, BC.

Harrison's tick bite.
You can observe the puncture mark in the center.
The surrounding area was pink and very swollen. Also, the hair around the bite had fallen out.

as far as i'm concerned this surpassed the realm of 'ironic' - i'd say it is a bittersweet juxtaposition 


that same day a news story about lyme ran on global BC tv (watch: "scientists say BC is on BC is on the verge of a Lyme Disease explosion") BC's provincial health officer continues to tout the standard party line that lyme is not prevalent in BC. during the broadcast, he insists,

"Clearly we have significant increases in infected ticks in eastern and central Canada but we have not seen that change in BC." 

i used to get outrageously furious upon hearing these blatant denials. to a certain degree, i still find it upsetting and aggravating but for the most part, i sit back and wonder if he realizes how absurdly ridiculous he sounds. studies done by scientist and epidemiologists have confirmed that the tick populations are exploding across this nation (and the world at large), yet BC somehow has been spared? it is nonsensical. 

Only a truly cosmopolitan dog would have eyelashes like that.

i watched that news broadcast with my newly diagnosed, very cosmopolitan puppy curled up on my lap...Harrison is a truly citified urban dweller who has his own wardrobe and does his business on a small patch of grass. his big foray into the wilds of nature was the well-groomed backyard of an urban home and who, as precautionary measure, had received his monthly dose of flea and tick repellent the very week that some dumb tick decided his hind quarters looked like a nice place to dine on.

Oh Canada

yet, our BC medical authorities adamantly insist that our risk of coming in contact with a tick is relatively rare. and it is highly unlikely that that tick would infect you.


furthermore, based on the presentation i highlighted in my indoctrination post (and as seen in the below slide from presentation), our medical profession is teaching front line physicians that lyme is so rare in BC, that prophylactic treatment plays NO ROLE - meaning it is unnecessary. And in areas where lyme is considered epidemic only a single dose of abx is recommended.

what i was told by the vet is so utterly contradictory that one can only shake their head, throw their hands in the air and wonder that such a bittersweet juxtaposition exists.


there i sat in a vet's office listening to him passionately speak of the need to prophylactically treat my pooch in order to spare him the potential of a life altering chronic disease that would cause him great suffering. yet in that power point presentation, a highly esteemed ID doc from BC not only dehumanized those suffering with the disease but taught other BC doctors that prophylactic treatment is unnecessary.


what a bittersweet juxtaposition.

the humane display of compassion, concern and immediate action that i encountered in the vet's office is in stark contrast to what we've experienced countless times when the patient is a human one.

Harrison's bite mark 4 days into abx treatment.
Mark is rabidly fading, inflammation subsiding and hair re-growing. 

dogs receive humane treatment.
humans encounter inhumane (non)treatment.


i said nothing of my experience with lyme during the appointment. i wanted to see how a tick bite would be handled and what would be said when a vet does not know that the patient's owner is lyme literate.


this is what the vet told me;


"lyme is a serious illness and if it is not treated promptly it can become a chronic disease. dogs can get very sick, debilitated and suffer greatly. they can develop arthritis, depression, heart issues and neurological disorders. we don't want that to happen to harrison. i don't like to prescribe abx however, in the case of a tick bite, abx treatment is warranted. i would rather over treat or prophylactically treat than not." 


"what about testing, is there a test for lyme?" i inquired.


the vet replied, "there is a test but i don't know how accurate it would be this early. if you would like to have testing done i can check up on that for you HOWEVER, i strongly recommend that you start him on the abx immediately. i would really hate for you to bring harrison back in 4 weeks or 3 months from now when he is having trouble walking and is very sick. the late stages of this disease are very painful. besides, the actual cost of the antibiotic is cheap enough. if you don't treat right away, then not only does the dog suffer but then treatment becomes very costly. if we don't treat him now and later on he develops chronic lyme disease, that that is a terrible situation to be in."


truer words have never been spoken.

Harrison's abx script

"oh no, i don't need a test to confirm anything. of course, we'll treat him. unfortunately, i am well aware of the consequences associated with the disease because i have chronic lyme disease." i quietly replied and with gratitude accepted his abx prescription for harrison.


his jaw hit the floor upon hearing that. "oh, i'm so sorry to hear that. i guess you don't need me to tell you then that over the course of the next several weeks, you need to watch harrison carefully for symptoms of lyme. if he starts to limp, becomes depressed or lethargic bring him in immediately. for now, i'll prescribe him 2 weeks of amoxicillin. let's see how he makes out with that and we can re-evaluate him again after that is done."


he then asked if we were planning on vacationing in the east kootney/okanagan regions of BC - specifically naming kelowna, kamloops, shuswap and penticton areas as having a high incidence of pets contracting lyme disease. he advised extreme precautionary measures should be taken for both us and our dog if we visited those areas. 


that is the kind of advisory that our public health officer should be and has a duty to communicate to British Columbians. 


i drove home in a daze. shocked that i've just added another family member to a treatment regime for this so called "rare" disease. and shocked that getting him treated was so easy. 


indeed, it is a bittersweet juxtaposition.

Antibiotics for Harrison The Dog Goertzen

why is it that my dog with a SUSPECTED case of lyme is promptly started on abx to prevent the devastating impact of a chronic infection - yet my son, who has a serologically CONFIRMED case of lyme and has been profoundly disabled by the disease, was not only denied treatment in Canada but medical authorities condemned us for his USA prescribed treatment by threatening to remove him from our care?

indeed, it is a bittersweet juxtaposition.