April 24, 2010

PARTNERS IN LYME


About 6 months ago, our friend Naomi asked us if she could set up a donation site and do a fundraiser for us in order to help us cover our medical expenses. we were honored and humbled by her desire and willingness to help us. we were also very uncomfortable with the thought of asking for help. asking for help is a really tough and humbling thing to do. however, with the advent of both of our sons now needing to undergo treatment in the USA for lyme disease, we've had to get comfortable with it. after all, a tick bit off more than we can chew.

over the last little while, a blog site called Partners in Lyme has been designed to serve this purpose. we've heard, via the grapevine, that there are folks who have a desire to help, but don't know how or what they can do. others have often asked us directly how they can help. we have so appreciated their inquiries but have often felt ill-equipped to give them an answer or just too uncomfortable to ask for what we need.

Partners in Lyme is the catalyst in which we will be able to convey our prayer requests and financial and practical needs to those of you who wish to partner with us on this journey. we hope that you will drop in to the Partners In Lyme blog and/or the Facebook page! Naomi will be running and overseeing both them. she is also planning a bowl-a-thon fundraiser. she's hoping to have that organized for sometime in the month of May - which is fitting as May is Lyme Disease Awareness month.


our journey with lyme has been an incredibly difficult ordeal, it has often stretched us far beyond our physical, spiritual and financial capacities and yet, time and time again, we have experienced God's miraculous provision and have been blessed in ways we would not have had we never encountered a lyme infected tick. many of you have and continue to encourage and support us in the most creative and profound ways. we are so grateful for that and are indebted to you. and huge thanks to naomi for taking this on! there is not a thank you big enough!

partnersinlyme.blogspot.com


video

April 23, 2010

A JOG DOWN MEMORY LANE

after spending 2 days flat on my back in bed, i was up and at 'er on monday morning. yes. back to the gym i went. this could become a habit. 

obviously, i am doing an incredibly modified, outrageously scaled back version of what i used to do. baby steps really. but as i hopped back on that treadmill monday, my body just took over. muscle has memory and mine was screaming,

"that's the way, uh huh, uh huh, we like it!"

running was always my therapy for coping with life. my greatest source of stress relief. i used to run every day. 8-10km a day. rarely outside. i'm a city girl after all. which makes the fact that i have an "outdoorsy disease" all the more ironic. i have to think too much when i run outside. 
watch the dip, 
don't step on the crack, 
hop over the pebbles,
watch out for dog poop
and
inevitably i would always end up inhaling a bug or two. 
nope, not a fan. far prefer the grind, the monotony and the predictability of the trusty treadmill. just hop on and go. forget my worries. outrun my fears. i loved it.
and now i'm back at it
2 minute jogs of solitary, muscle burning bliss.
thank you God for restoring this ability to my body. 




while my muscles may be happily jaunting down memory lane, my autonomic nervous system has headed over the hill and around the bend in a frenzied state of panic and disorientation.
it has gone into shock. in the past 2 weeks, i've undergone 4 unmentionables and done 5 mini workouts. it has been a dynamite combination of toxin expelling. the massive exodus is creating a shift in the remaining toxins and causing all sorts of very strange responses.

take, for example, my big, fat, purple feet.
i am not kidding.
out of the blue, they will start to tingle.
within seconds, they start turning red, then swell up and turn purple.
i'd love to get a picture of it but it never lasts long enough.
they do it whether i'm sitting, standing or lying down.
strange indeed


i am having major shifts in my blood sugar levels too. at varying times through out the last couple of years, i've had problems with hypoglycemia but these attacks are worse - and are happening in the middle of the night. i am waking up in the middle of the night all shaky, nerves frayed and sweaty and numb. a sip of juice generally quells it within 20 minutes or so. this is a bit disconcerting especially when it is accompanied by numbness on the left side of my head.


i am very relieved that we will seeing DR D on monday. this is our doctor who is in Seattle. parker, taylor and i all have followup appointments with her on monday morning. i'm looking forward to getting these things checked out. i'm also expecting a standing ovation from her and her office staff when we arrive. after all, i've now undergone 4 unmentionables. that is deserving of applause. and i told her that during our last phone appointment.



please pray for our appointments. since our last in office appt (6 weeks ago), Taylor has not improved as we had hoped he would. in fact, he has actually gotten worse. one of the remedies DR D had him on has cross over properties that are effective against the lyme bacteria. his worsening in symptoms within 3 days of starting this med are most likely indicative that his lyme infection is more active than we originally thought. DR D has indicated there is a strong possibility that he will likely need to undergo aggressive antibiotic treatment. this treatment would need to be done under the care of DR H in CA. we have already booked a tentative in office appointment at the end of May for Taylor with DR H. the outcome of DR Ds findings on monday will give us a clearer picture of what we're dealing with and if indeed a visit to DR H is truly needed. please pray for wisdom for DR D as she assesses Taylor.

aside from rediscovering the joys of muscle memory, i've been traipsing down memory lane. most days i have the feeling that i've been catapulted back in time to the foggy haze that accompanies those first few weeks with a newborn. no newborn here, mind you but with 3 of us on fairly comprehensive and involved treatment protocols everything revolves around scheduling.

ok so i just heard someone snort at my audacity to suggest that newborn and schedule can actually co-exist. in my world, they did. did i ever mention that i'm anal retentive when it comes to being organized? i breast fed all 3 of my kids and i had all 3 on schedules.

feed. poop. pee. nap. feed. poop. pee. nap. feed. bath. bed. 
thankfully i had cooperative babies.
and for the most part, they are now being fairly cooperative patients.



take this pill with food
take this pill on an empty stomach
no dairy for 2 hours prior to taking this pill.
take this pill with dairy
no lying down for 45 minutes after taking this pill
take this pill 1 hour before eating
mix this med with water

stand on your head, recite the alphabet backwards, pat your head, rub your tummy while taking this pill.

yeah.
insane
now imagine 3 of us with regimenins like that.
it is ridiculous.
to simplify it as much as possible i've put us all on a pill popping schedule.
10am, 12:30pm, 3:30pm, 5pm, 10pm




every monday, i set up my pharmacy on our kitchen table
and
dole out the weeks supply
it takes nearly 45 minutes
and
i am always terrified that i will give someone someone else's pills


the boys always hope that i'll forget to slosh green goo their way. ha ha. yes, they are having to knock back green goo now too.


kinda like those mushy peas i used to shovel into them. now there's a memory i'd like to forget! all 3 of my kids were spitters barfers. and that didn't stop when they started solids. ew. they all hurled all the time. i never left the house without an arsenal of what i called barf rags. public outings were a danger to anyone within a 6 meter radius of us. if memory serves me correctly, when taylor was roughly 3 months old, he projectile vomited over the pew and down the back of some lady in church one sunday morning. coward that i am, i high tailed it out of there before the effects of the offending projectile soaking through the delicate fabric of her sunday best alerted her to the calamity.

isn't it funny how you can look back to those first few weeks of motherhood and wonder how you ever survived? i sure do. it was nose to the grind, think only in 3 hour increments (if you can think at all), be grateful for the chance to shower once a week, the rest of the time expect to be encased in puke stained sweats.

and no one ever thinks to tell you that at least a 100 times a day you will question your ability to be a mother. that you will feel as if you have no idea what you should do with this 8lb human being who can reduce you to a puddle of tears in 3 seconds flat. that sleep deprivation will cause you, more than once, to wonder aloud who sent you this baby and just what did they expect you to do with it now? at the end of the day, you will stumble into bed exhausted and then lie awake listening for the reassuring sounds your baby's breathing.

and nobody ever tells you that the newborn stage was the easy part. and that it gets harder the older they get. that every emotion you experienced in those first 6 weeks of their life will only become magnified with each passing year. that you will intrinsically feel their every heartache as if it is your own, that you will weep for their pain, that you will scream in frustration at your inability to comfort them, and a 100 times over you will feel inadequate, ill-equipped, and unprepared for this task called motherhood.

right now, my boys are home full time. neither is in school and some days both are too sick to get out of bed. they need a lot of hands on mothering. for the past 3 years, i have not been able to mother them in the ways that i yearned for. lyme took me away from them and robbed me of my abilities. now, i am being given the strength to nurture them. sure, everyday feels like an insurmountable challenge to meet the demands of care taking whilst trying to juggle all that is entailed on my own road to recovery. sure i still have a lot of days where i am more patient than caregiver and a 100 times a day, i feel ill-equipped, unprepared and inadequate to fulfill my God given role as their mom. and i'm certain that one day, i will look back on this time in our lives and wonder how i ever survived.

but my muscle memory reminds me that sometimes what is lost can be found again
and sometimes what is lost is replaced by something far more beautiful and precious.
i hope that my nostalgia gives me the foresight to do more than just survive this. i want to live in it,
embrace every painful, chaotic, exhausting, frustrating part of it
and find the courage to see that lyme is giving me the gift of time with them

after all, life has taught me that memory exists because nothing ever quite stays the same...




and
sometime soon, they will get better. they will grow up. they will sprout their wings and leave the nest. and i bet that will be harder than this.



i better enjoy this while it lasts.




April 17, 2010

NO PAIN, NO GAIN


"endure and persist; this pain will turn to good by and by"
                              ~ ovid, roman poet
                                      

the day after my return to the gym, i was sore
that good kind of sore
the kind of sore that indicates neglected muscles are finally getting the attention they crave
i was so excited to feel sore like that again

today, i am in pain
the kind of pain that is accompanied by a host of other symptoms
i am irritable, slightly manic, i can't sleep, twitching and jerking, my head feels like it could blow off, my neck and spine rigid and stiff, my joints are ablaze with searing pain and my body is continuing to purge -without the aid of a rubber hose...


apparently the lyme and babesia do not take kindly to being purged from my body
they are raging and as a result i'm flat on my back in bed

it's a bummer but i'm trying to keep it in perspective 
sure, i feel horrendous
imagine having the flu, the kind of nasty flu that necessitates a trip to the ER, as you gingerly make your way to your car, you slip and fall down your flight of stairs, and then on your  way to the hospital you are rear-ended which results in a serious case of whiplash, add insult to injury, the paramedics that attend accidentally run over you with the gurney.
ok, that's a little lame but it is the best way i can think to describe what it feels like to be in my body right now

however
a year ago, the days i felt that way were the days that i defined as 'feeling good'

if my 'good days' from a year ago are my 'bad days' now
well, that is a considerable shift and improvement

and being laid up in bed again has given me a chance to catch up on my blogging...which is a comfort. it calms my manic mind. it is weird how that happens. my body craves calm and rest and yet my brain is in overdrive.
 


i am hopeful that this pain and flare in symptoms, is just my body reacting to the loss of the mondo amount of toxins that i have expelled through both the colonics and my 2, yes 2! workouts i did at the gym. after all, i undertook quite the intensive detoxing regime in the last week. it stands to reason that there would be fall out from that.


DR H has told me that when you pull a lot of toxins out of your body, it momentarily interrupts your body's equilibrium. as your body struggles to recalibrate and shift remaining toxins and heal, it can cause a temporary increase in nasty symptoms.


of course, quite naturally i fear that this is one of my big bad herxes. and if it is, well that bites big time. not that i didn't expect to still herx, after all, it is an unavoidable part of treatment but what i didn't expect was to herx this hard and this bad.  i really thought the worst of the worst of those had finally passed.  and now, here i am again, stuck in bed, riding out the storm. i fear that not being able to get out of bed today will turn into tomorrow and the next day, the day after that, the day after that. but, you know, a herx is a form of healing too. actually, "herxing" is also called a "healing crisis". that is an interesting perspective to ponder considering the torturous dance that is.


so i will rest and let my body heal
if you think about it, healing at any level produces temporary pain.
psychological healing involves confronting emotional baggage and working through that is a painful process.
but the end result is freedom and release from that which imprisons your spirit makes the pain of the process worth it.
why should healing from the physical damage of disease be any different?
quite simply, it is no different.
healing is painful.
but it is worth it.

no pain, no gain


so i will endure and persist; and this pain will turn to good by and by




April 16, 2010

FLUFFY-FLUFFY & THE UNMENTIONABLE




READER DISCRETION IS ADVISED
this post contains content that is not suitable for all readers. 
if you are easily offended, have a weak constitution 
or a heart condition 
the information contained in this post is likely to traumatize you.

proceed with caution





so i mentioned awhile back that fluffy-fluffy was going to be undergoing an unmentionable treatment.

fluffy-fluffy has greatly debated in her own head if the unmentionable was really something she should, could or ought to blog about
the unmentionable is pretty personal after all, and needless to say rather embarrasing
and sigh, it is probably, it is the perfect example of TMI -wayyyyy Too Much Information!


however
she also knows that one can learn from the experience of others and never has that rung more true than in the case of fighting lyme and all the varying therapies involved and endured. after all, a courageous lyme friend told fluffy-fluffy of her own experience with the unmentionable and her encouragement gave fluffy-fluffy the nerve to give it a whirl (thx, MB)

so fluffy-fluffy figures if sharing the unmentionable  benefits and supports another on their road to recovery, than she is willing to take one for the team.
after all, knowledge is power

and yet, fluffy-fluffy still couldn't quite bring herself to write about it...that is, until she remembered that princess diana was a pretty outspoken proponent of the unmentionable
and so without further ado,
fluffy-fluffy will reveal the unmentionable in a post that she is pretty sure will go down in history as a case of TMI...



however
if royalty can speak of such things than certainly fluffy-fluffy can blog about them.

fluffy-fluffy went for a colonic
3 to be exact
all done in an 8 day period


not sure what a colonic is? allow me to enlighten you:

"During a colonic, you lie on an inclined table with a sort of built-in potty at the base, a towel covering your privates. A plastic hose is connected to the irrigation machine on one end, and the other end goes into you via a speculum inserted in the rectum. A hydro therapist oversees the entire procedure, adjusting the volume and temperature of the water, pumping it into you under gentle pressure and lightly massaging your abdomen to work the water through the colon. During several fills and releases, 20 to 30 gallons of water are pumped in and sluiced out through an evacuation hose, washing impacted waste and debris from the colon walls." source - A Thing of Beauty

basically it's up your butt with a rubber hose.


poor fluffy-fluffy!

DR H has been after fluffy-fluffy to do this for over a year now
and she has violently, vehemently resisted

partly out of fear...like heeeellllllooo? who would choose to do that? 

partly out of embarrassment...fluffy-fluffy is modest. she even brought a bathing suit to an anticipated water birth. (don't ask me how she thought that would work.)

partly out of concern...she was worried that it would mess up the one system in her body that actually functions in a healthy normal way. (according to oprah's DR OZ anyway)

and lastly
well come on?
do you even need to ask or think twice about why someone would be reticient to endure a treatment like that!

heellllloooo? we're talking about someone putting a rubber hose up your butt with the expectation that they will be assisting your body in flushing out all sorts of unmentionable matter. and, most embarrassing, all of the, ahem, debris is flushed out through a rubber hose, a very transparent, very visible rubber hose. and horror of horrors they even have a mirror over the bed so that you can watch. oy!



so fluffy-fluffy nervously set out last friday for her first colonic
graham drove her
but he did not accompany her in
heavens no!
this is the one time when support is best done from a distance

and you know what?
it was no big deal
turns out fluffy-fluffy got her shorts all in a knot for no reason at all
it was no big deal
it didn't even hurt at all
really
and
it was incredibly informative and well, interesting
i suppose one needs to have a mild fascination with the inner workings of the human body to say that


and you know what else?
colonics really do not have a lot to do with poop
oh sure, poop is part of it
but that is not all
toxic foamy debris, stagnant lymph and dead bacteria are expelled
and
that is pretty spectacular
quite frankly, a sight to behold in my books
because their decaying remnants are as much a death trap to my body as the toxicity they expelled when alive
goodbye dead borrelia, goodbye dead babesia



we found you hiding in the inner most reaches of my colon, we pumped water up my descending colon, across my transverse colon and down the ascending colon until we found you hiding in my cecum (the cul-de-sac of the colon). a toxic load holed up and sucking the life out of my long suffering liver but now we've got you cornered with a rubber hose and we're going to flush you out with 20 gallons of water.


goodbye and good riddance


fluffy-fluffy noticed a difference in her overall puffiness after the first colonic. by the second, her lymph massage therapist was astounded by the difference in her swelling and the texture of her skin. the third time, fluffy-fluffy's body released an exorbitant amount of toxic debris...and the pain and the bubble wrap like texture that could be felt under the skin on the right side of her abdomen released and is gone.

so fluffy-fluffy is pretty impressed with the outcome, thus far
she could easily become a colonics pusher
try it and you'll see!
she might even start a fan page on facebook
but really
one should not do it unless advised to by your doctor
some doctors pooh-pooh colonics

but
DR H has been pushing fluffy-fluffy to do a series of colonics since april of last year!
so what finally made her follow his advice?

well, she's also seeing DR D now and DR D just flat out told her she HAD to do it. DR D said she rarely recommends them for patients but fluffy-fluffy absolutely needed to do it because her body is burdened with a toxic load that is stressing her liver and kidneys. DR D was pretty sure that fluffy-fluffy's tired little liver is so overburdened and that is what is probably causing some of her swelling.


first DR H
then DR D


both telling insisting that fluffy-fluffy get her butt to a colonics expert


so now she's done it. and has a few more to go. as per DR Ds recommendations. so has it provided any sort of lasting benefit in helping to resolve fluffy-fluffy's puffiness? she sure hopes so. time will tell.
it seems to have so far made a fairly significant difference in fluffy-fluffy's puffiness
that is a welcome change

who would have thought that pumping 20 to 40 gallons of water into fluffy-fluffy's colon would actually decrease her overall girth?
interesting.

you know what else fluffy-fluffy learned?

according to the colonics practitioner, she has a strong body and a very co-operative colon. how many people can say that? wonder if old fluff should put that on a resume? naht! however it sure was nice to hear someone say she has a strong body. and you know what? fluffy-fluffy believed her. she does have a strong body. it's been through a lot.




one last thing, i might add about the benefits about colonics
i believe princess di credited them with her youthful appearance

i only had 2 colonics under my belt, when i had to take taylor to a doctor's appointment. taylor is my 17 year old son.  we were sitting in the doctor's office and a gentleman leaned over and asked me if taylor was my husband.


taylor was mortified. i was jubilant.


i think princess di was on to something.

CONGRATULATIONS!

if you are reading this, it means you have survived my attempt at a semi educational read on the unmentionable. for more detailed information on all that is involved in undergoing a colonic, i would recommend the very informative and hilarious read "A Thing of Beauty"





April 14, 2010

I'VE COME A LONG WAY, BABY



today was a big day.

a monumental
and
gargatuan milestone

today i went to the gym
i have not darkened the door of a gym in well over 3 years
hard to believe it used to be part of my everyday daily routine


afterwards, as i was walking home, all of a sudden i realized it's april
ok, so yes, it is generally fairly apparent that i still have unresolved date and calendar challenges but they aren't quite that bad anymore. like, i knew it was april - it is just that this very week of april, 3 years ago, i started treatment.

april 11, 2007
3 years
3 years of the blood, sweat and tears of treatment
3 years of one step forward, 2 steps back
3 years and it's not over yet
but
ive arrived at a milestone
a humdinger of a marker on this wretched marathon called recovery



i went to the gym
i did
i honest to goodness did
and
it makes me weep and scream and shout in victory


20 minutes on the treadmill
even jogged for 3 - 2 minute intervals
even lifted weights
1 set of arm curls, 8 reps with 5lb weights


that is an accomplishment
and 
a victory

it is the marker
of the begining of the end;
it is the line drawn in the sand.


that pivotal moment when faith becomes sight;
it is that epochal moment when i can finally see proof of life;

it is that unforgettable moment when the impossible recedes and possibility begins.


its walking into my old stomping grounds,
seeing the faces of old friends, those die hard gym rats i used to see on a daily basis
and
feeling like i've stepped back in time or maybe that no time has elapsed at all

oh, i'm not delusional, on closer inspection, it's apparent they've all aged
and
shucks, so have i
a lot of time has passed between then and now  

and
as i picked up those 5lb weights and faced the mirror to monitor my form,
the image reflected spoke volumes of the passage of time
sure, i am no longer the buff and robust and athletic woman that i used to be
sure, i am older and pale and gray and saggy and whole lot fluffy-fluffy
but
when i looked in that mirror, i saw a warrior.



yup. i've come along way baby.



this week i read a post on my friend Melody's blog. Melody has just recently started IV treatment. she blogged about it and as i read her post, i wept...for her and for all of those that live through the insanity of this wretched disease. i wept because her post conjured up my own vivid memories of living in the eye of the storm, a twisted wreckage of body and mind, mercilessly sucked into a vacuum of death...for it is the very death of this disease that nearly costs you your life. in fact, the memories i have of living this horror are still so close to the present that they have almost not earned the merit to be called a memory quite yet...

when i look back at this journey thus far,
those first 18 months especially were absolutely harrowing and terrifying,
i spent most of them bed bound for weeks or months at a time
and
it was a lonely, lonely, lonely non-existant existence


i spent a lot of time, locked away in my bedroom, scared and alone. the insanity of recovery drove friends away and often dictated the need for graham to flee the suffering with the kids in order to shelter them from the all consuming fury that death to this disease unleashes - that inconceivable phenom called herxing.


herxing in it's death defying fury has brought on 4 hour long panic/anxiety attacks, OCD, suicidal ideation, hallucinations, tremors, twitches, fevers, sweats, chills, noise sensitivity, sensory overload, vision loss, memory loss. at times, it took away my ability to walk, talk or understand what was going on around me. and always there is the pain. unrelenting pain, agonizing pain, pain beyond description...
 

death was on my brain alot during these times
i thought i would die
i wanted to die
i begged to die
i prayed to die
i planned to die


i've lived it and it is still nearly inconceivable to me that the road back to health is the horror that it has been. am i dramatizing? not at all. in fact, the opposite is true. the road to recovery is an impossible, unimaginable, inarticulable agony. 
unexplainable really, unless you have lived it.

and even having lived it, i look back now and find it hard to believe that i've not only survived it
but that
i am finally, miraculously emerging from this living death

and today,
today is proof of that


i've come a long way, baby




April 7, 2010

LOOK AT ME


my posts of late have been fairly infrequent
i miss blogging
and it is often on my mind

with growing frequency i often mutter,
"i should blog about this"

my musings about possible posts are often followed by quips from my family,

"you never blog about me!"
"or me."
"or me"
one after another, they practically fall over themselves in a bid to be the center of attention
seriously.

for those that know our family you will laugh out loud at that.
obviously, because you know that there are several of us who like to be the center of attention

yes, it is true.
most of us
in this family are desirous of basking in the glow of the spotlight

ok
to be exact, there are four of us who like to be in the spotlight
one of us not so much
parker, my proverbial middle child, quiet, unassuming, and low key; he totally shies away from being the center of attention
as you can imagine, being in a wheelchair is his worst nightmare
now, take his siblings, for example
they wouldn't have such a struggle with it
in fact, they would probably relish the attention it begets
avery has been known to commandeer parker's wheelchair in public
wheeling herself around
and yelling at passerbys,

"hey people, look at me! look at me!"

yes. she has really done that.
what a girl!
can't blame her, after all, it's in her genes

it's funny how "our life with lyme" rather than "my life with lyme" has hijacked the majority of my posts lately

i suppose my posts are still about me,
oh sure
like how i'm nearly coming unglued on a daily basis
and
how my sanity these days is in serious question
but what about my fight with lyme?
after all, isn't that what this blog is supposed to be about anyway?

and
whatever happened to fluffy-fluffy?
the fluffster is still here
in all her bloated, puffy, boggy, saggy glory
and
coincidentally she misses being in the spotlight, too
even though, at times she must share (for the sake of science, of course) of the embarrassing and crazy things she endures in trying to banish her puffed up state. well, she's been pretty busy of late...i'm sure she'll show up soon to regale you all with her sordid swelling tales... but that will have to wait for another day.

because this post isn't about her
or about the kids
or about my questionable emotional stability at present
or about the medical hoola-pah-looah we must fight
or about the myriad other things that are deserving of the spotlight
this post is about me...
and where i'm at in my own fight with this stupid, insidiously awful disease

i'm back on IV rocephin. back to dancing with my iv pole 6 days a week. one day off. but that's just the start. i'm knocking back 3 malarone a day and pulsing artemisinin, 4 days on, 3 days off in order to stomp out my babesia infection. i'm hitting the lyme with biaxin, diflucan and pulsing tinidazole, 3 weeks on, 3 weeks off.

then there's the wobenzyme, still gulping down 40 of those puppies a day in order to help heal my serious inflammation issues; add to that, the daily castor oil packs, and liver detox meds and my infamous green goo, and a plethora of other adjudicative meds - too many and too boring to list. hold up though, some of them have some very interesting names; forskolin, lion's mane, mundipur, biomins...the list is an endless bevy of ludicrously named products. however, i'm grateful for the scientist or herbalist that discovered them because they are helping.

oh, and recently we learned that my bartonella infection, that is yet to be treated,has taken up residence in my lymph nodes and is wreaking havoc in my body yet my body just can't handle treating it quite yet. oh yes, i've got trouble with my liver too - not from drug side effects but rather there is a colony of parasites congregating on it...really very freakishly fascinating. had to endure injections into the scar tissue above it in order to alleviate some of the strain on it. that hurt. a lot.

before i move on, i might add, that there is lymph drainage therapy twice a week, the every other day abdominal injections, and an "unmentionable therapy" i'm about to start (and might just let fluffy-fluffy loose long enough to blog about it. one day soon. maybe.)
and last but certainly not least, is my gabapentin, which may be my new wonder drug du jour, 8 of those a day help to control my full body neuropathy.

and oh yes, i'm juggling treatment protocols for both of my sons. and have i mentioned that on top of that, i'm simultaneously doing grade 5 and grade 12 because both my boys are not well enough to attend school. okay, so i'm not really doing it. i'm attempting to teach it. most days that feels like a struggle in vain.

this would probably be a good time to mention that i'm in therapy now. the shrink kind of therapy. i'm grateful for the counselling, it's helping me cope with a life that i mostly feel incapable of coping with. i'm pretty sure that my bi monthly sessions have my counselor seriously reconsidering his vocation

but in spite of all the hours that are devoted to my fight, despite the myriad pills and a schedule that is dictated by pill popping and over run with therapy appointments, doctors visits, picc line dressing changes, homeschooling and fighting a medical system that appears to be conspiring to keep me (and my sons) sick, a battle that has forced us to get help out of our own country ,
aside from all that,

i am having multiple moments on multiple days where i forget i'm sick
how that is even possible, in the midst of it all,
is simple astounding
and
ever so deserving of a little focused attention.

i'll say it again, i have had multiple moments on multiple days where i forget i'm sick
look at that!
look at me!
i am getting better
i can feel my body healing
and
that is pretty darn cool

it is more than just cool,
it is oh so divine
to not spend every hour of every day wishing for an escape hatch that i could slip through and gain freedom from a body that is riddled with pain and hemmed in by a foggy brain

so what if its true that most days, i'm an unkempt, disheveled mess cloaked in sweats and over sized tees,
that most days, i still grit my teeth in order to do the most menial of tasks
so what if most days, i am hard pressed to scrape up enough energy to climb a flight of stairs, or wash my hair, or throw a load of laundry in the washer -
so what
because
there are those other days,
those blessed snippets of time where i feel pretty amazing.
those days where i have the energy to slap on some makeup, squeeze my puffy, bloated body into a pair of jeans, and slip on some ballet flats and head to the grocery store and not worry about getting lost on the way there

sure, it's not the 'pre-lyme' me, why that me even wore heels and full makeup to labor and delivery all 3 times,
sure, i might feel overdressed every time i clothe myself in anything other than sweats or change out of my pajamas to go to the drug store
but hey
look at me,
i am having days where it's not scary to live in my skin
i am having days when i can peacefully reside in my body
and where it doesn't hurt every single minute of every day

look at me,
i'm having days where i can experience life rather than merely endure it

look at me world!
look at me, my dear lyme buddies!
there is hope!
there is a light at the end of the tunnel
and
i can finally see it
it might be just a pinprick, a twinkling glimmer on the distant horizon
but it is there

finally,

and most importantly,

look at me, my dear sweet sons, look at me
mom is getting better
and
you will too


April 5, 2010

THE EASTER EGG HUNT


so we experienced an Easter egg robbery this year.
it really happened
an Easter egg pilferage

the scene of the crime took place at my folks
the whole family was gathered
to celebrate the resurrection of our savior
and
yes, in our family, part of that celebration includes an Easter egg hunt

my folks live in a condo
so ok, it's not like they've got a fenced in private backyard to call their own
however
there is a snippet of lawn on their premises
and they had reserved it for the grand kid's egg retrieval gaiety.

this grassy little knoll is just off the patio that adjoins their condo's common room

yes, the condo's common room
where we all gathered
lazily basking in the glow of each others company
and
enjoying the view of our grassy little knoll through the big, beautiful windows that so grandly frame it

and then
we saw HER

a pint sized perpetrator in a peach colored wind breaker
stealthily tip toeing off with something in her greedy little grasp.

not sure who regained their voice first
maybe our niece
maybe our nephew
maybe one of our kids

but suddenly our stunned silence erupted into indignant and bewildered murmuring
"hey that little girl is stealing our Easter eggs"

i think i yelled,
"let's get her"

but alas
sure enough
before we could launch a defensive, she skipped over the knoll and out of sight
no doubt in one furious flurry of face-stuffing, she consumed our ill-gotten chocolate the moment she was out of sight


where'd she go?


dear unidentified little girl:

it is a very naughty, naughty thing to steal Easter eggs. our family watched with horrified shock as you waltzed into my parent's duly reserved knoll and stole their grand kid's Easter eggs. the audacity of your crime rendered us defenseless. you may have gotten away with it this time, but next year we will be waiting. we will guard our eggs as enthusiastically and passionately as we hunt them. oh yes, next year, we plan to take the hunt to a whole new level.



NOTE TO SELF:
arm children with nerf sniper guns for next year's Easter egg hunt





April 4, 2010

DO YOU BELIEVE?


HAPPY (belated) EASTER!




WHAT IF
by nicole nordeman

what if you're right...
and he was just another nice guy

what if you're right?
what if it's true?
they say the cross will only make a fool of you
and what if it's true?

what if He takes His place in history
with all the prophets and the kings
who taught us love and came in peace
but then the story ends
what then?

but what if you're wrong?
what if there's more?
what if there's hope you never dreamed of hoping for?

what if you jump?
just close your eyes
what if the arms that catch you, catch you by surprise?
what if He's more than enough?
what if it's love?

what if you dig?
way down deeper than your simple minded friends
what if you dig?
and what if you find a thousand more unanswered question down inside
that's all you find

what if you pick apart the logic and begin to poke the holes?
cuz you've been running as fast as you can
and
you've been looking for a place you can land for so long

what if the crown of thorns is no more than a folklore story
that must be told, and re-told?
but what if you're wrong?

what if there's more?
what if there's hope you've never dreamed of hoping for?
what if you jump?
just close your eyes
what if the arms that catch you, catch you by surprise?
what if He's more than enough?
what if it's love?




He loves me
He loves you
He loved us... enough to die for us

"this is how much God loved the world: He gave His Son, His one and only Son. And this is why: so that no one need be destroyed; by believing in Him anyone can have a whole and lasting life. God didn't go to all the trouble of sending His Son merely to point an accusing finger, telling the world how bad it was. He came to help, to put the world right again." ~john 3:16-17

i believe
do you believe?



April 2, 2010

ARE YOU KIDDING ME?


it has taken me a long time to write this post because i am angry. no that would be an understatement.
i am
outraged
furious
livid
horrified

yup. that's more like it.

parker's treatment in canada has been terminated.

ARE YOU KIDDING ME?
no
sadly i am not
(but happy april fool's day anyway! ok so i realize it's a little past that already - thought i'd be finished this by then)

last monday, we learned that parker's treatment was in jeopardy. this news was delivered to us during parker's follow up appointment with the doctor from children's hospital who had agreed to partner with DR H in treating parker.

we sat in an exam room and listened to her tell us that she was "not comfortable" prescribing treatment to parker.

ARE YOU KIDDING ME?

this after just ONE MONTH of antibiotics.

ONE MONTH in which the patient, MY CHILD, has shown undeniable signs of improvement.

ONE MONTH?
are you kidding me? that's not even enough treatment according to the flawed treatment guidelines.

it is only by the grace of God that both graham and i kept our dignity and anger in check as we sat there. but you had better believe that we passionately advocated for our son. i told her that in no uncertain terms i would passionately fight for treatment for my son and i would not take her dismissal of our son lying down.

and so i asked her some tough questions...

"parker has a life threatening infection, does he not?"

"yes," she acknowledged, "he has a life threatening infection."

"are you telling me that you are refusing to treat his life threatening infection?" i asked.

"you have to understand, it's my career and license at stake."

"it's my son's LIFE that is at stake." i incredulously replied

"but if i prescribe and something (bad) happens, it will be on my hands."

i said,
"if you STOP prescribing and parker deteriorates and returns to the state he was in 30 days ago, who will be responsible for that?"

a shrug of the shoulders and upturn of hands was the only response i got.

ARE YOU KIDDING ME?
no
but at least our pushing and questioning prompted a promise from her to "re-think" her position and talk to her colleagues.
ultimately, she did not change her mind.

last friday, we received the official word that she would no longer be prescribing parker's treatment.

she stopped treating parker...despite the fact that she acknowledged that parker has a life threatening infection.

she stopped treating parker...because she is fearful of losing her license and having her career tarnished

she stopped treating parker...because she is "not comfortable" - yet admitted she feels badly about it because she can see that the treatment is making him better

she stopped treating parker..but asked 6 or 7 other doctors if they would treat him

all of them declined...on the basis that they were "not comfortable"

are you kidding me?
what kind of a world would we live in if we all stopped doing anything that made us feel uncomfortable... or never did anything that made us feel uncomfortable to begin with.

as frustrated and angry as i am with this doctor for opting out of treating parker, a part of me understands her perspective.
ARE YOU KIDDING ME?
no i am not.
even though i am angry and everything in me wanted to reach across her desk and slap her upside the head, i get that she doesn't know enough about lyme to treat it. and how can she be expected to treat a disease she knows very little about ? i get that. what i don't get is her unwillingness to LEARN about it. here we have a doctor (DR H) who has 9 years experience treating lyme, has treated hundreds of sick kids and whom was more than willing and did in fact talk to her, fax her, email her, write her -all in an effort to guide her and teach her about treatment. it feels like an absolute joke to sit in a doctor's office that is located in a hospital that is considered to be a teaching hospital...in an office where you are always seen by a resident first, who then consults with the doctor in order to LEARN medicine.

ARE YOU KIDDING ME!

naturally, my gut reaction is to vilify this doctor
but the bottom line is that she's not the enemy.
is she doing the right thing?
in our opinion that would be a resounding NO!
but is some of my anger misdirected?
probably
but where then do i direct my anger?
the college of physicians and surgeons (CPSBC), the BCCDC, the IDSA? certainly, in all manner of speaking, it is these powers that continue to perpetuate the myths about lyme, suppress the truth and threaten to bring sanctions or disciplinary action against the few doctors that are willing to treat it.

i am angry at a medical system that publicly states that they are educating our physicians about lyme, and that doctors are free to call and get information about it YET we are hard pressed to find even one whom possesses enough knowledge of it to "comfortably" treat it. I am angry at a medical system that has harassed and penalized doctors that are willing to treat it. of these, they have made examples...one could even venture to say it was intentionally done in order to serve as a warning - "treat chronic lyme and it will cost you."
the threat appears to be serving its purpose.

so where does that leave me and my boiling blood?
it leaves me with a sick kid who has been abandoned by
doctors

my knee jerk reaction is to find a way to seek revenge. after all, we're talking about a life and death matter here. it is clear that they would play pass the hot potato with our son's life....until it ceased to exist. that being said, i need to make this clear - parker's treatment will not stop. DR H is his doctor. abandonment by our canadian system does not mean that parker will not receive treatment. it only means that, in addition to all our other out of pocket expenses, that we will now have to somehow absorb the cost of his meds too - from the USA. i want to make them pay...after all, this is costing our family everything. oh, you better believe, i want to stick it to them, get in their face and make them do the right thing. yet, no matter how justifiable my anger, it does not justify a vengeful reaction. in doing so, i would be demonstrating the very behavior that i find so outrageously offensive about them.

do i want folks to be as horrified as we are?
of course
do i want my friends to jump to my defense and rage along with me?
of course
i would be lying if i said i didn't want that
but, at the same time,
i do not wish to be a conduit from which bitterness, rage and anger stems and flows


so where does that leave me and my boiling blood...in the context of my sick kid, our fight, and my faith?

sadly the systemic bias that exists in this country will not be changed in time to save parker's life and give him the treatment he needs.
does it mean that we don't continue to advocate for change?
absolutely not.
it is our responsibility to do that.

in the context of the bigger picture, we are not alone in our experience with this systemic bias. it is an abomination that is wide spread in this country. its abuse is a wide-spread plague that forces nearly all canadians who contract the disease to flee south of the border for help.

do i have a responsibility to teach my children to stand up for themselves in the face of injustice, unfairness, prejudicial treatment and abuse?
absolutely
but i also have a responsibility to model to them how to do that in a way that upholds our faith and maintains our integrity and emotional health as a family.
living in a whirlwind of constant criticism about the medical system with parents who incessantly screech about the unfairness, the abuse that we are living under...and are hypersensitive towards the behaviors that "prove" that, well, that could keep us as sick as the denial of treatment could.

yet, i wonder if it is possible for me to fight the system without living in a state of perpetual rage? is it possible to advocate for change in a way that is constructive rather than destructive? how does one not tolerate the intolerable in a way that is not intolerable in its own means?

so i actually know the answer to that.
i'm just a little too hot under the collar to do it just yet.
but it starts with "P" and ends in "RAY"

"love your enemies and pray for those who persecute you." matt 5:44

are you kidding me?
HA! I WISH!

another translation reads like this:

"i'm telling you to love your enemies. let them bring out the best in you, not the worst. when someone gives you a hard time, respond with the energies of prayer..."


it takes a whole lot of energy to be and stay mad. if i am devoting my energies to prayer, how much energy is left over to bitterly spew about their recriminations against me? interesting.

certainly, praying for "them" and surrendering my anger doesn't mean we stop fighting the system and advocating for change.

no way.
in fact,

"we are obliged to fight to remove the injustice (ours and those of others that are oppressed). we should face the oppressors, push them, and fight to change the conditions for the oppressed. therefore there is no way forward but to enter into the struggle.
BUT we must consider the commandment to love our enemies,
in order to prevent us from the danger of deviating from fighting the oppressors into being oppressors ourselves. if we fall into the trap of replicating their actions or attitudes we destroy our humanity by neglecting theirs, our souls would be tainted and they would have defeated us because we took their positions."

prayer is a powerful tool against my adversaries. it may or may not change their position but it will free me from the oppressive hostility i feel towards them. praying for my enemies allows me to surrender my anger and relinquish my need to somehow make them do the right thing. indeed, it allows me to view this whole horrific situation in the context of the sovereign power of God.