BARNEY, THE BIG PURPLE...

there is a beast in my garage.
a great, big, shiny purple beast
and
his name is barney
barney is our 'new to us', beautiful, purple minivan 

barney arrived today
PRAISE THE LORD for His provision
and
THANK YOU to the pennington's bible study group;
a couple from their group donated barney to us
and 
the rest of the folks chipped in to get barney road ready for us

what a gift!
wow
really
wow

and yes, we really named him barney
after all, naming inanimate objects comes naturally to us
why barney?
do you really have to ask?
there is only one thing in the world that is big, purple and brimming with love
it's almost a no brainer 
have you figured it out yet?


we named him after barney the dinosaur. surely you know him. you know, that great big purple dinosaur who gushes with love and is famous for singing this song:






i love you
you love me
we're a happy family
with a great big hug
and
a kiss from me to you
won't you say you love me too.


see what i mean?
our barney, is just the same
he's a great big, huge, purple hug of love
what an amazing gift 

of course,
the family of squirrels that had taken up residence in barney
are probably not feeling the love
yup
apparently barney had been sitting dormant for awhile
possibly quite a long while...
long enough for a family of squirrels to build a nice, warm, cozy home under his hood
and
due to the high volume of nuts we found in it,
we think they probably had hoarding issues
serious hoarding issues 

(of course, that's just speculation)

when i heard about the nest
and
the nuts
i felt kinda bad 
poor little guys 
after all, we've ruined their home
and
pilfered their food supply

we pretty much kicked them to the curb
our gift is their demise
makes one pause a moment - 
it's humbling to consider
it really, really is
barney's a gift of both love and sacrifice
and we are thankful and grateful and amazed


and the squirrels?
well,

i'm not feeling so bad about them anymore
nope. no way

not since taylor noticed what was scratched into the front hood of barney:

yes
really
no lie
it spells fart

we think the squirrels did it.
(of course, that's only speculation)

CURRENT STATE OF AFFAIRS

dare i even venture to post an update - knowing that it is more than possible that anything current could be out of date by the time i finish this post and hit the publish button?

suffice it to say, i will dare.

first let me get this off my chest
i hate this disease
hate it
absolutely loathe it

moving on

PARKER'S CURRENT STATE:

the craziness side of his symptoms aka the delirium has settled down. i say that with breath held fearing that at any moment he could disappear on us again. for the time being, he is only having sporadic and mild episodes. we are very thankful for that.

i am also pleased to report that the bleeding issues we've been having with raymond (his PICC line)  have slowed down to a trickle. we are grateful for that and hoping that all the bleeding will resolve quickly.

on the physical side of things there has been no improvement. his joint pain is still really bad. he is back to having to rely on crawling to get around the house. i am also concerned that his babesia infection (his primary infection) is becoming active again. a large part of his treatment is targeted at the babesia infection. he has now been off both his IV abx (which is for the lyme) and his oral abx (which is for babs/lyme) since last monday (nov 8). within 2 days of being off of them, some of his previously resolved babesia symptoms came back. these are shortness of breath, heat intolerance, body temp dis-regulation and tremors.


currently, we are continuing the intensive detox protocol that DR H put him on. i know some folks are interested to hear what is being done to detox him. so here it is:

500mls of IV fluids a day
IV phosphotydal choline 
cholestyramine 3doses/day 
alka seltzer gold 8tabs/day
benadryl 4 tabs/day
magnesium 3000mg/day

homeopathic tinctures:
mundipur, burbur detox, coro-calm, renelix, viscum


epsom salt baths 


TAYLOR'S CURRENT STATE:


taylor is like the silent partner in our lyme picture. he's sick but not in "crisis mode" sick. he's sick but not psychotically bouncing off the rafters like me. he's sick but not wheelchair bound like parker. he's sick, but as is the curse of most lyme patients, he looks healthy.

he's had some improvement since starting aggressive treatment this past summer. he spent most of the summer couch bound and rarely left the house.
since september, he has been able to get out with friends, he attended and completed his first course thru our church's Bible school, and he was (sometimes) been able to get to his military training one evening a week. but aside from a day or two a week, he still spends a large portion of his time at home. not that i am complaining about that. it's nice to have him hanging around. and his girlfriend mara is a frequent guest. i love that. i love that we get to hang out so much. we all love him and her dearly. but a large part of me grieves over this - because even tho' he's feeling a little bit better his, his life resembles anything but that of a healthy young man.

i am concerned that we have hit a bit of a plateau in taylor's recovery. while he is improved since the summer he has not had any discernible herx since august. if he is not herxing, he is not killing bugs. 10 days ago, he started a cyst buster. the job of this abx is to target the bacteria that is hiding. he's been feeling a little 'off' since starting it and has had an increase in his pain, fatigue and cognitive function. this week, DR H added in another new med. hopefully, he will be able to get started on this one sometime this week. then we'll sit back and brace for impact.

we're hoping that when it hits, his herxing won't include any sort of psychiatric component. he's far too big and too strong to restrain. nuttiness aside, i worry about my son. a lot. i know he doesn't think so but i do. i know he'll get through this but i know he suffers in silence. most of the time. part of that is because i know he doesn't want to add to our stress. part of that is because that is his MO. he tells EVERYONE that he is fine. even me. 

and he is not fine. 
he is sick. 
most days, he struggles with intense pain, fatigue, insomnia, headaches, and diminished cognitive function.
he is hurting.
his friends are moving forward while his life, his dreams, his plans have been sidelined indefinitely.

he's beginning to feel hopeless as the timeline for getting better keeps getting pushed forward.
he's frustrated 
with having to somehow make his life fit within the confines and constraints of lyme
he's struggling
to find some type of work that fits his unpredictable world


from where he stands, pretty much everything in his life is moving backwards or not moving at all
and his self esteem is taking a beating
magnified by being at an age where the predominant struggle and feeling is that no one understands you
then
couple that with a having a disease that (nearly) no one understands
and
well, that's an awful and lonely place for someone to be
he's bearing an awfully heavy burden
and
he suffers in silence


when he is out, people ask him how i am or how his brother is. it is a rare occasion when HE is asked how HE is doing. do me a favor? if you are someone who is in contact with him, the next time you see him or talk to him, ask HIM how HE is doing.
and when he tells you "he's fine"
ask him again
REALLY ask him
let him know that "i'm fine" isn't enough of an answer for you



i have no doubt that one day he will be fine. i know that he can get through this. i know that he will.
but he could really use some support and encouragement along the way.



SHANNON'S CURRENT STATE:


as aforementioned, i HATE lyme disease.
that is my current state of mind.
however, that is probably an improvement over my state of mind a couple of weeks ago.
at least i'm not completely bonkers anymore.


apart from crazy side of things, i'm feeling really wretched. i've spent the past 4 days flat on my back in bed. which has been beneficial for my blog but not for me or my family. psshhttt! i don't even know what to say anymore. or think. it's just hard to be so brutally sick again. part of me is surprised. part of me isn't.

i really haven't had a chance to recover since my limbic seizures started the end of october. i was barely out of my own craziness before parker's week long run of delirium started. in order to deal with that, i was running on sheer adrenaline. certainly, this barfing business isn't helping or conducive to my recovery. last week, i only had one barf free day.  so, in addition to a flaring of my physical symptoms, i am wasted from all the barfing. but i've only lost a couple of pounds so i must be keeping something down. it is a very weird feeling to have to make one's food choices based on how it will taste coming up. sick.

currently, i am off my IV meds and only on oral abx - and then just ones that deal directly with the bartonella infection. however, given my barfing state, i'm not always keeping down those meds. the IV alternative to the orals is not available in canada. DR H is giving things a few days to settle but if i'm still barfing so much, than we'll have to go across the border to get these new IV meds. we haven't even checked out the cost yet. but based on the cost of some of the other IV meds i've been on, we're figuring the cost will be somewhere in and about the "i'm going to have a heart attack" range.

so the count down is on. in the meantime, i'm flat on my back - for reasons i can't really figure out. who ever really knows why? it's not just from the barfing. sure that has weakened me but i've also got intense nerve pain that radiates from head to toe, headaches, shortness of breath, muscle fatigue, dizziness, wonky eyesight and joint pain. is it a herx? am i keeping enough meds down to even herx? is it a flare? i simply don't know.


did i mention i hate lyme?

GRAHAM'S CURRENT STATE:


uh, yeah.
frazzled, fried, exhausted, angry, sad, burnt out, numb, exhausted, tired, hurting, lonely, exhausted, fed up, stressed out, run down...


i needn't go on, i'm sure you get the picture...


i do what i can, when i can but for the most part, all of this crap is pretty much solely his burden to carry. and now he's got a dog to 'pick up' after. he'd never publicly admit or cop to it but we've all overhead him calling harrison his baby boy.

even if i was the epitome of health, it would not have been possible to care for parker alone over the past week and a half. he needed nearly round the clock monitoring - our only break being the 6 hrs the meds would knock him out for at night. we are beyond grateful that graham's work has given him some time off. his supervisor has been unbelievably supportive and compassionate. we are incredibly thankful and appreciative. graham's work is in incredibly important to him. he works with kids. youth. and he loves them. in his perspective, being off work is tantamount to abandoning them. it is difficult for him to stay away. lyme has required so much sacrifice of himself and it has taken away so much - his interests, his friendships, his down time, his plans - and for now, hopefully just for a very temporary, short time, his job. we are incredibly grateful for the time off but it sucks that this is what needed to happen.


AVERY'S CURRENT STATE:

avery is struggling. 

she has seen a lot of craziness over the last couple of weeks. it is starting to take it's toll on her. she has become very quiet. and that breaks my heart. she has always exuded a special joy and that little light has dimmed as of late. 



HARRISON'S CURRENT STATE:


he has gas.
really bad gas

but
so long as we're wearing nose plugs, he really has been and is the hugest, biggest, fluffiest albeit stinkiest source of comfort...

SURVEY SAYS...

"Our lives begin to end 

the day we become silent about things that matter."  

                                                -Martin Luther King, Jr.

several weeks ago (week of oct 19) there was a media blitz about lyme here in BC. information came to light that proved the BC Center for Disease Control (BCCDC) has been suppressing the actual number cases of lyme disease in our province. the information stems from a survey that the BCCDC conducted in 2007. it was a survey about lyme disease. the results?  BC physicians had diagnosed 221 cases of LD in 2007. publicly, the BCCDC reported that there had only been 13 cases that year.

explosive information.
the survey also showed that only 60% of BC physicians even knew that LD was a reportable disease.
again. explosive information.

we've known that the BCCDC was suppressing this information. members of canlyme have been fighting to bring it out in the "lyme light" for a long time. the BCCDC claims that these results were made public and were readily available. yet, they denied the multiple public requests for the results. in fact, they didn't release them until the request was made under the Freedom of Information Act (FOI). and even then, it took them 9 months before they finally coughed it up.

when the story broke in the media in october, we were hopeful that it would force the BCCDC to acknowledge their wrong doing. or so the irrepressible optimist in me thought. the one that believes and hopes that folks will own up to wrongdoing. how can they not? with the proof right there in black and white. in a perfect world, that would happen. then again, in a perfect world, lyme wouldn't exist. neither would lying. cheating. outright deceit. in a perfect world, integrity, truth and honesty would be upheld by everyone - including those in power. 

obviously, we don't live in a perfect world. 
and moral conscious is ignored when it is confronted with the (inconvenient) truth.

unfortunately, CBC, the media outlet, that broke the story didn't hold the BCCDC accountable for their obvious breach of public trust. somehow they managed to weasel their way out of it. i don't know how. the explanations given were so contradictory and their excuses were nonsensical. 
it would be (almost) laughable... 
if this disease wasn't so radically life altering 
and 
if our blood was not (literally) in and on their hands.

the day this information was released to the media, i made sure to forward this on to the reporter at the Richmond News. the same one who had covered our story back in may. back then, he (and the paper) did a 3 part series on our family and lyme.

SMALL BACK TRACK INTO THE NOT SO DISTANT PAST HERE:

i'm not sure if i actually posted them or not so here are the links to them.

ARTICLE #1
Family always looks on bright side of life

ARTICLE #2

1,001 Ways to wish get well soon

ARTICLE #3
I can't believe I'm posting a link to this crap article :)

the BCCDC's response (in the 3rd article) to our story was appalling. i was furious that their spokeswoman would make it personal by attacking us and  our lyme literate doctors. the reporter ended up hearing through the grapevine that i was super upset and contacted me. this 3rd article was supposed be the final article in the series but he gave me opportunity to respond to the BCCDC.

i responded with a letter and the paper printed it. the following is the link to that letter:

ARTICLE #4

"Placebo Effect" isn't helping us get our life back


POST SCRIPT:
There was huge response to the paper's articles. and they recieved many letters as a result of the articles. they published many of them. you can read them by going to their website home page and entering "lyme disease" into the search engine on their home page.

Richmond News Homepage

OR

This link may take you directly to all lyme articles, i think :)

BACK TO PRESENT DAY:

obviously, that type of longevity in media, in and of itself, is quite remarkable.  so i doubted anything would come of me emailing the reporter this latest information. but i held on to hope and with a click of my mouse forwarded on the media press release to the reporter.
then i held my breath.
and
held my breath
and 
held my breath
and
held my breath
and
then i started having seizures (maybe, i shouldn't have held my breath so long. ha. ha.)
at any rate, with this onslaught of new symptoms intensified our private battle with this horrific disease
it consumed us whole
and
swallowed our ability to give any time or energy, let alone thought, to the public side of this fight
3 long weeks went by
and then,
in the midst of the mayhem, came an email from the reporter
turns out he had been working on the story all this time
and
had been in dialogue with the BCCDC about the survey
and
he wanted my thoughts and reaction to their emailed response
ASAP!
could i call him right away?

i didn't have time
i didn't have the energy
i didn't even have the desire 
i didn't want to deal with it at all



i am so utterly tired of it
all of it
the public and the private battle
i just want it to go away
all of it
and
i didn't want to read through the all too familiar BS of the BCCDC
but
i was grateful for this reporter's continued interest
and
painfully aware, that too many lives have been turned upside down by this dreadful disease
one that it is preventable and curable (in early stages)...
- BUT ONLY if you know about it -
awareness is the key

and, as i see it, speaking out is making a difference
maybe not in the political domain (yet)
but the word is getting out
every article written
every story published
every time the news reports on lyme
it results in public awareness of this disease
and
awareness and knowledge about lyme is saving lives
and
so i opened the email and subjected myself to the BCCDC's BS response
and
it hurt, as i knew it would
it infuriated me, as i knew it would

it deeply grieved me, as i knew it would

how can they keep lying about this?
don't they care that people are LOSING THEIR LIVES as a result?

it cost me to confront it again
but
i did it anyway
and
then i called the reporter
and
i said, "we are in crisis mode right now. i've got 15 minutes to give to this."
and then, in a flurry of emotion,
i blurted out my gut reaction 

here's the thing:
give me a few hours,
and
i can articulate myself decently in written form 
but
i do not think well on the spot

i inarticulately babbled on and on to the reporter for 15 minutes
and
after i hung up, i felt like not only had i failed to speak intelligently, i had not done the story justice
and i really, really, really wanted to sit down and think it all thru 
and THEN email him THAT response
but
i had no time or energy 
and 
i really didn't want to THINK about it
i did not want to dwell on the anger
and
so, with some effort, i let it go
(and the teeniest, tiniest part of me hoped the reporter would let it go too)
but
somehow he made sense of my scattered responses
and
he wrote an incredible article
it made the FRONT PAGE of the newspaper on friday

Disease expert's excuse is "hogwash" 
or
(this is the link to the digital copy of the paper)


i just noticed today that, in addition, to the above front page article, their "editorial opinion" was about this survey too.

Survey on Lyme worrisome


so there you have it - some, ok, a lot, of leisure reading for a sunday afternoon.