May 27, 2010


this morning we had our appt for taylor with DR H.

near the end of our 90 minute appt, DR H was going over the treatment protocol that he has prescribed for taylor's lyme and bartonella infections. DR H writes all of the treatment down on a paper that he then gives us however his writing is profoundly ineligible. doctors are notorious for having terrible hand writing but DR Hs is in a class all of it's own. i find it helpful and well, necessary to take my own notes.

while i've lived in medical jargon world for years now, some of the meds and supplements still sound foreign and have weird spellings. plenty of times, i have had to ask him to spell them out for me. often by the end of our lengthy appointments, i am physically and mentally exhausted. the strain of trying to remain focused for that long inevitably ends up leaving me struggling to operate with a brain that has turned to mush.

today my decreased brain function ended up being a great source of entertainment...for 3 of the 4 of us in the appointment anyway.

DR H: "start him on vsl-3"
ME: "how do you spell that?"
DR H: "ummm, v....s....l"

and then graham, taylor and DR H all exchanged looks and burst out into raucous laughter.
i still didn't get it.
i sat there, completely bewildered, pen still poised waiting for him to give me the full spelling of vsl.
just did not compute.
at all.

eventually, i got it.
and then i told them they were all jerks.
ha ha. very funny.
laugh at my lame lyme brain.

after our appointment, we headed back to our hotel room to eat lunch and have a little rest. seeing as our wednesday plans to head out in our boat for a little tour of SF didn't happen (why we even still try to plan ahead is beyond me) we decided that today we would endeavor to steer our great white ship through the hills of SF. didn't know if she would fit, but we decided we were up for the challenge of at least trying to maneuver her down lombard street.

obviously, graham is captain of the ship. despite my obvious brain fog, he left me in charge of navigation. i don't know why he would trust my decrepit mind to lend directions to our various ports of call.. maybe he's got brain issues of his own. maybe he was hoping for another laugh. at any rate, i was left to plug our co-ordinates into our trusty GPS companion "mortimer" (read about our other adventures with morti here and here)

that was a total fail.
and so the story goes.

somehow we did manage to make it to the several ports of call that were on our docket. first a stop at fisherman's wharf.

there is always plenty to see...certainly the view of alcatraz is cool

and the sea lions are a must see. even though all they do is loll around in their undulating stench

naturally, there end up being other things you see that you would just as soon forget.

much to our surprise, we even saw a car boat that rivaled ours...

we were slightly envious until we realized it was only a smidgen larger than our grand boat and was definitely not the 'ultimate edition' that ours is

i've heard of limited edition but ultimate?

from fisherman's wharf we headed way uphill to lombard street which we then brazenly sailed down.

next port of call was the coit tower. a couple weeks ago, the boys and i were watching the tv show "amazing race" and coit tower was one of the places the contestants ended up at. we thought it would be cool to see it up close and personal.

as we piled off the ship, avery exclaimed,
"oh wow. cool. there's a statue of luke skywalker here."

evidently we are not very cultured.

by this point, the boys and i were exhausted and sore and needed to board our ship and rest in the comfort of our roomy cabin.

the roomy luxury of the ultimate edition

we nearly decided to head back to the hotel but we pushed on. after all, our last port of call for the day was the "gojden gate ayhdge". it would be ridiculous to be so close to it and not cruise across that most famous of famous landmarks in SF.

as we sailed across the bridge in our splendidly ultimate ship, it suddenly dawned on us that our crew was starving. i have never ever heard of anyone starving on a cruise ship however our ship was sadly lacking in the food department. we decided dinner was needed. just a short jaunt from the gojden gate ayhdge is a little town called sausalito. graham and i drove through sausalito on our first trip to SF. we remembered that we had eaten at a cool little joint that had fantastic mexican fare. we couldn't remember the name of the restaurant but graham was pretty sure he could find it. fine captain that he is, he found it. and oh, did we laugh as we docked in front of it and saw the name


i can't think of a more fitting or hilariously ironic way to end our last evening in SF.

May 26, 2010


overtired sailors and a minor emergency meant our plans for a laid back sight seeing cruise through SF did not happen today. rather, we were forced to navigate through a sea of lines and before the day was done we even ended up (unintentionally) dancing in a riptide - thankfully, even though we broke some rules, we survived.

my picc line (peripherally inserted central line) provides access for my iv meds. the blue cap (resting on my forearm) is where i attach the iv tubing and iv bag when i run my iv meds. the skinny blue line that disappears through an insertion point in my skin travels up a vein in my arm and exits just above my heart. it is about 50cm in length. because the line is semi-exposed (meaning insertion sight is open) the sight and area surrounding it must be kept exceptionally sterile. the entire is cleaned and re-dressed (or covered over) with a big, clear "band aid" once a week by my home care nurse. it is a very sterile procedure.

every week the nurse brings the sterile kit that is used to clean and change my dressing. for several reasons, my kit is very specialized and contains several different components that are not included in your average, run of the mill picc kit. whenever we travel i always take a kit with know, just in case something happens. in all our travels, nothing has ever happened. in fact i almost didn't bring the kit with me this time. space in our luggage was at a premium and the kit is bulky and awkward to pack. i seriously debated leaving it behind. let me tell you, today would have been a shipwreck of a day had i left it behind.

while i was waiting for the boys to wake up today, i hit the treadmill in the hotel's gym. (how fabulous is that?!!) which was great with the exception of one slight problem. i got overheated and my arm got all sweaty under my picc dressing "band aid". this resulted in the band aid lifting. which meant that my line and insertion point were exposed and no longer sterile. which meant that i needed to have my picc arm sterilized and re-dressed pronto. now what we should have done is made a beeline for DR Hs office. he has a nurse on staff that could tend to this delicate and very sterile procedure. however that would have cost money. so graham and i decided to undertake the procedure on our own. after all, we had the kit and i have watched a nurse do this every week for the past 2 years. i bet that i could do it myself with my eyes closed... utters she who was an absolute stressed out, freaked out, shaking wreck as she directed and nervously shrieked orders at her husband as he donned the unwanted role of picc nurse.

anyway, we managed. got 'er done. dangerous seas safely crossed and shipwreck avoided. phew.

neither of the boys were up before 1pm so by the time they were functional and we had mucked through our hour long foray into sterile procedures, the day totally got away on us. we ended up not being ready to leave the hotel until 4pm. we figured it was a little too late to tour the city so we headed down to half moon bay instead.

we 'discovered' half moon bay on our second trip to california. at that time, another canadian family was living there while their daughter was undergoing treatment for lyme. over the years they have become very dear to us and so we tried to connect with them as often as possible when we were in town. after spending an afternoon with them in their temporary residence in half moon bay, we ended up stumbling upon this little italian restaurant. and there we discovered the most majestic pizza ever. yes, i meant to write majestic. i've not mixed up my adjectives.

now it has become tradition to go to half moon bay for this majestic pizza on every trip. we have ended up having the same really sweet waitress every time too.
which has kinda added to the specialness of the experience. we took parker in december but he ended up getting really really sick just shortly after getting to the restaurant and so we had to pack up and leave pronto. we promised the kids that we would take them this time...despite the fact that avery "hates" pizza. half moon bay is a really pretty little seaside town with fantastic beaches so we were hopeful that a trip to the beach would be a fair compensation for avery. she LOVES the beach.

parker was in pretty rough shape when we set out but we hoped he would regain his sea legs in time to enjoy the beach. lately, he has had very dramatic fluctuations in his symptoms. he can literally go from laying on the couch writhing in pain to a minute later, standing up and asking graham to go outside and play hockey with him. yes, as incredibly insane as it sounds, it is true - in the blink of an eye, his condition can change that dramatically.

we had a really incredible time. parker did temporarily regain his sea legs and was able to horse around on the beach. both the boys engaged in a favorite past time - torturing their little sister.

for me there is something incredibly healing about being by the ocean. i have often said that it would be my dream to have ocean front property. and hey, that may not be such a pipe dream - graham and i often joke that we are so broke that we will probably have to retire to a cardboard box under a bridge. but hey, where there are bridges there is water, right?

as i sat on the beach, breathing in that salty air and getting lost in the sound of waves, and watching the kids race around, i could almost pretend that this was a vacation. i could almost forget that we are sick. that a wheelchair is not just a stone's throw away waiting for the moment that ability is once again snatched away. i could almost ignore the ache in my heart and my fear of the storm that is brewing just beneath the surface of my smile and jokes and the kid's carefree playing. amidst all my pretending and forgetting and snubbing my nose at reality, i neglected to realize that i was allowing my children to dance with a rip tide.

note to self:
pay close attention to large signs that say DANGER.

oh buoy!

in reality we dance with the riptide of lyme everyday. i often feel like i am one wave away from being swept away in a sea of pain and symptoms and confusion and discord.
today, for a moment, i could almost pretend that we were just your average family enjoying the sand and surf. i cherish these little moments of respite and i hold on to their memory for dear life. it is these moments that somehow keep me buoyant amidst the turbulent seas that we sail.

May 24, 2010


we are currently in san fran. we arrived this morning. "we" meaning the whole family. (thank you to our friend mo who is taking care of our place while we are away)

taylor, parker and i all have appointments with DR H this week. i am hoping that one day soon i will be well enough to handle making this trip with just the boys. but for now, my brain still shorts out on a regular basis and so it is necessary for graham to accompany us. and seeing as it was necessary for the four of us to go, we couldn't see leaving avery home. after all, she's still a little young to be left alone. ha. ha. she worries a lot about her brothers and so we felt it was important for her to come along this time.

i am still finding it hard to come to terms with the fact that both of my boys have lyme. wow. not a day goes by where i don't have a moment (or two or three) where the gravity of our situation leaves me feeling like i've been sucker punched in the gut.

the boys popping pills in the airport

however, as difficult as things are, it is nice to be here together. we're hoping that we are all well enough to fit in a little bit of sight seeing on wednesday. i'd like for avery and taylor to see the bay bridge and i have always wanted to hop on one of those famous cable cars. in all the trips we have taken to san fran in the past 2 years, we have never done this. not sure if we'll be able to do it this time...especially considering parker is in a wheelchair but we figure if all else fails, he can be towed behind it. not to worry, we've assured him we'll make sure to double knot the tow rope.

we had to leave at 5am in order to catch our flight. i still can't believe we made it to the airport in one piece at that time of the morning. we all slept on the plane. once we arrived, we caught a shuttle to the car rental agency. and that is where our boating adventure began. obviously we are trying to cut costs at every turn so graham used priceline to bid on a car rental. we've had such great success in getting super cheap hotel rates that way. indeed, we managed to get a fabulous deal on a rental car. only one problem, the car is a monstrosity of a boat.

it is enormous. i have never in my life seen a car that big. as soon as we saw it in the car rental parking lot, the kids all shouted,

"you've got to be kidding us!"

we are by no means car snobs. after all, we drive a dented up mini van for pete's sake. but this car is a monstrosity. so there we stood in the parking lot, the kids were gagging and loudly protesting and i nearly peed my pants laughing. the minute i saw the boat, it conjured up instantaneous visions of straw hats, hawaiian print shirts and orthopedic shoes. after all, i'm pretty sure only retirees on vacation in florida cruise in a vehicle the size of a ship.

we all nearly declared mutiny on graham when he told us he could have gotten an SUV for the same price. the boys nearly had a coronary when they learned that dear old dad had said no to an SUV in favor of this ship.
3 stowaways preparing to set sail on the boat
parker slouched down as far as possible in an attempt to remain hidden from view

anyhow, once the luggage was stowed away in the hull, i mean, trunk, we boarded the ship and headed to our hotel. seeing as we fly in to oakland airport, we have to cross a toll bridge to get to our hotel which is located in south san francisco. we considered skipping the toll fee in favor of sailing across the bay but when we realized we had no personal floatation devices on board, we opted to cross the conventional way.

we are settled in our hotel room now. ironically, our hotel overlooks a marina. the boat is anchored outside. we're thankful the hotel is not charging us a mooring fee.

aye, aye captain!

i bet the boat will live in our memories for a very long time.

May 21, 2010


at our appt with DR D at the beginning of this month (which i'm now just getting around to blog about) we learned some difficult news. (which is why i'm now just getting around to blogging about it)

first, it was confirmed that taylor does indeed need to start on aggressive abx treatment. this means that he too must now start seeing DR H for treatment.

second, DR D made it clear that his plans for the (foreseeable) future -as in leaving for boot camp in june - must be delayed for at least a minimum of a year.

this was all difficult to hear but not entirely surprising as we had pretty much expected it - in fact, prior to this appt, we had already scheduled a tentative in-office appt with DR H for the end of may.)
what we didn't expect to hear and were totally unprepared to hear was to have her clinically diagnose taylor with a co-infection of lyme. we thought we had ruled out the co-infection issue with him
so we were pretty much shell shocked to have her diagnose him with bartonella.
no no no
how can this be?
he was supposed to just have straight lyme
which simplifies treatment and recovery (if anything in regards to lyme can ever be referred to as 'simple')
i was crushed
this isn't supposed to be!
how can it be?
the whole stupid congenital lyme thing is hard enough to swallow
now there is more
when will it end?
forget end - when does it just stop getting worse?

we arrived home from our appointment
heads spinning
hearts heavy

the following morning the phone rang
it was taylor's canadian GP on the phone
she was calling to inform us that taylor's canadian blood test for bartonella had come back positive

and this news instantly transported us
had us high five-ing each other

how is it that a dx that devastates one minute can become good news less than 24 hours later?
welcome to the twisted road of lyme we travel!

first it backs up his american diagnosis. i was hopeful it would earn our american docs some credibility with the medical system here. and even though, it doesn't change the fact that he will still need to undergo treatment under DR H's care, it at least gave us the hope that
we may be able to get some treatment for him here in canada.

the fight to obtain canadian treatment for first myself and now parker has taken every ounce of our strength and has drained us physically and emotionally. after our last appt for parker with an ID doc, where we spent 2.5 hours heatedly advocating and begging this ID doc to prescribe DR H's treatment plan, we made the decision that we would no longer put ourselves or him through that kind of torment anymore. so we certainly were not planning on even treading that path with taylor. while it is important to advocate for our boys to get the treatment they deserve, our primary priority is to protect them. continuing to expose them to these heated discussions and the resulting attitudes of either blatant hostility or indifference is not in their best interests. in fact, it is detrimental to their and our emotional health and well being.

for these reasons, we accepted that probably parker's and most definitely taylor's treatment would be based soley in the US. no matter what the cost. and in the grand scheme of all things financial, the cost of their meds is minor related to the immense cost the whole of their US treatment costs.

and then along came the bartonella dx
followed by the canadian serological evidence of it
which set in motion the canadian bartonella treatment roller coaster we have been riding for the past 3 weeks

we made an appt with the GP who had the blood test results
taylor's bartonella titre came back very high (meaning it is a raging infection)

however, his GP would not touch him with a ten foot pole
as i started to ask her to prescribe doxycyline (an abx) for the bartonella, she cut me off mid sentence and with finger wagging in my face, she agitatedly shrieked,

"how many times do i have to tell you people, i will not treat you. i don't want to have anything to do with this. why don't you just take him to 'your guy' in california and get him to do something about it."

so much for hoping the Canadian evidence would validate our american doctors in the eyes of the medical profession here.
and i want to point out that the doxy prescription he requires to treat his bartonella is not unconventional or dangerous. in fact, it is the same abx at the exact same dose that she would prescribe long term if taylor had acne.

taylor calmly replied,
"i have a canadian positive for a disease i contracted in canada that is fully treatable in canada."

then it was his turn to be the recipient of her finger wagging and irritation.

"how many times do i have to tell you people, i will not treat you." she looked him dead in the eye and said, "i've told you i'm not getting involved. sorry about that but i won't do it. and besides i don't know anything about it."

taylor courageously suggested she do a little reading and learn about it.

by then she was near the erupting state, she stomped her foot and as she opened the door to storm out of the office, she irately added,

"i'm not interested in learning anything to do with this."

am i shocked? no.
just sad and mad. this woman has been - was - my doctor for the past 20 years. she delivered all 3 of my kids. i trusted her to do right by them. i trusted her with their lives.

we left her office with a referral to an infectious disease doctor. i had to ask for and insist on even getting that.

once again, i felt beaten down.
back to being mad and sad about the whole stupid bartonella dx
upset that the stupid serological evidence of it had now thrown us back in the line of fire in the medical system here.

i could not understand why this, why now, why require us to fight for treatment...after all, isn't it enough that we've got one hek of fight on our hands just to get our son's healthy?

i came home from that appt with our GP and posted on my FB status that i am, "too tired, too sick, too overwhelmed, too frustrated, too angry, and too trampled over to care anymore."

i truly felt it but of course, i care...and so we prepared for our appt with the ID doc

thankfully, our appts with the ID doc have been a pleasant albeit totally peculiar experience. while the ID doc will not acknowledge that bartonella can be a tick borne infection, he has at least been kind, respectful and praise the Lord, he has prescribed a 4 week course of treatment. while it doesn't come close to the amount of treatment taylor will require, at least it is something. it is a blessing in disguise that taylor's antibody titre came back so high. fortunately, it was too high for the ID doc to ignore. that, coupled with the fact that taylor has lost 15lbs in short order and his symptoms of nausea, bone pain, fatigue and headaches have profoundly affected his quality of life to the point that he can no longer attend school certainly made for a good case for the necessity of treatment.

what has been peculiar is the fact that anything tick related has been the blatantly ignored pink elephant in the room.

bartonella is a tick borne infection however it can also be contracted from a cat bite or scratch. we were very clear with the doctor in insisting that taylor has no exposure to cats...with the exception of one friend who owns a cat. no one in that home is or has been sick. and from what i've heard, they have been scratched and bitten by their cat. while i've heard that taylor likes to torture this cat (i think it's name is boofy) by belching in it's face, it has never bitten or scratched him. (probably because it passes out every time taylor comes near it) so no, there is no way that boofy or any other cat gave taylor bartonella. however, when i demurely and "naively" asked the doc if there was another mode of transmission, he just silently sat there. so i prompted a response by saying i had heard that bartonella could be contracted through the bite of a tick. the doc shuffled his pen and then nervously replied,
" ummm, well, that is how cats get it."

oh my.
he then went on to acknowledge that taylor's symptoms are not in keeping with the type of cat contracted bartonella.
i made 2 more generalized statements about ticks.
both of these were ignored.
i decided to leave well enough alone. after all, i suspect, the thought is that it would be more likely to come across a pink elephant in canada than it would be to bump into an infected tick.

and besides, the doc did prescribe an initial 2 weeks of doxy for taylor.
he asked us to come back at the end of that for a follow up
so last week we had our follow up appointment
since starting doxy, taylor's headaches have gotten more manageable and his nausea has greatly improved. when the doc weighed him, we were all pleased to find that he had gained 3lbs. we are grateful the doc acknowledged that this was significant.

after taylor's weigh in, the doc weighed in on what he thought should be the next course of action. given that there has been some improvement, he was willing to prescribe an additional 2 weeks of doxy. i asked him if he would prescribe an additional abx called rifampin. the combination of doxy and rifampin is the standard treatment protocol that a lyme literate/ tick borne disease specialist uses to treat bart and both DR H and DR D have recommended that taylor be treated with this combination. given the pink elephant lolling away in the corner, i didn't come right out and say exactly that. i just suggested that i had been doing some research and had talked to a doctor friend who had suggested that this would be advisable.

this was followed by what i can only describe as peculiar side stepping on his part. i can't figure this guy out. either he has been forewarned about us 'lyme people' by our GP or he wants to help but is nervous that if lyme is brought up and has to be recorded in his notes than that could pose a dilemma for him. at any rate, it is just very peculiar.

but hey, i'll take peculiar over outright hostility any day of the week.
we left his office with another 2 weeks of doxy AND 2 weeks of rifampin.
we'll be following up with him again in 2 weeks.
one step at a time.

in a previous post i alluded to having been living with some massive ups and downs. the bartonella roller coaster, among other things yet to be blogged about, has certainly taken us through some pretty major highs and lows. the bartonella dx is a major downer yet it has helped us obtain some covered medical treatment for taylor. i guess i can consider bartonella a blessing in disguise. and really, it is nothing short of a miracle that taylor was even tested for it - let alone for the results to come back positive. you see, i don't even remember requesting he be tested for it. DR D had requested that we get some basic labs done (blood counts and liver function panels) on taylor and bring the results to our appt with her. the week before our appt with her, i took him to our GP in order to get the lab req. apparently i must have requested she add a bartonella test to the work up. however, i don't remember doing that. not only that, but tick borne co-infections were not even on ours or DR D's radar. so i cannot explain why in the world i would have asked that he be tested for it. all i can say is that it was a total God thing.

there is no doubt about it that the bartonella dx is a tough pill to swallow and in the days that followed it, i questioned just how he could have gotten it. after all, he has been dx with congenital lyme. there are clinical studies and scientific evidence that support that both lyme and babesia are congenitally transmitted. but what about bart? how does it fit in to this twisted picture? i didn't know. i wondered how to make sense or peace with that.
and then, a few days after getting the dx, came this press release from north carolina state university...


how amazing to have my question so profoundly answered.
another bartonella blessing in disguise.

May 19, 2010


awhile back i blogged about my hairballs (much to the chagrin of my husband)

the hairball thing was nasty
but i found more humor than alarm in it
DR H thought it was falling out due to iodine deficiency
we tested and sure enough, i was iodine deficient
so we started supplementary iodine and the whole family breathed a collective sigh of relief figuring our hairy woes would soon be history.
now, several months down the road, i am no longer iodine deficient. initially, my upped levels of iodine seemed to make a difference but recently my hair loss has accelerated at an alarming rate
my old hairballs ain't got nothing on this level of shedding anymore
in the last 6 or so weeks, i have lost 30% of my hair.
it is very upsetting, disturbing, and panic provoking
which is why it was at the top of my list to discuss with DR D during our in office appt a couple of weeks ago.

graham had recently started taking a multi-vitamin that is "specially formulated for men". i ran out of my own non-gender specific mineral supplements the week before we went to see DR D. i didn't want to buy anymore until after we had seen DR D (because my medications/supplements are often changed after such visits) so i started dipping into graham's "man pills"... which he was horrified over. not sure what he was worried would happen?! then again, not sure what i thought would happen either. maybe at some subconscious level i figured a few man pills might help my noggin as it was rapidly beginning to resemble male pattern baldness.

at any rate, graham reported my 'man pill abuse' to DR D
when DR D responded by telling him that my man pill taking may actually have some merit. i just sat their smugly smiling in all my patchy bald glory

DR D suspected that my hair loss may be due to either low TSH levels (thyroid issues) or some sort of hormonal imbalance (low testosterone). she suggested that we get blood work done to check these levels once we were back in Canada. my lab work has now been done and although all my levels are within the lab's "normal ranges" there has been a significant drop in my TSH. it has gone from a 3.1 to .8 (normal lab range is .38 to 5.5)

unfortunately since we saw DR D, she has experienced hormonal issues of her own- (as in had a baby a little ahead of expected due date). she is now on maternity leave so i cannot get feedback from her. i'm trying not to pull out what's left of my hair over this. i've not discussed this with DR H (yet) but it will be at the top of my list when i see him next week. i'm hopeful that he will be able to pull something out of his magic bag of tricks to save what is left of my last few limp strands.

my family doc here in Canada has not been able to offer me an explanation but
he referred me to a hair doc whom he said has been able to help a lot of people.
i was happy to hear that...
until his office called to say i couldn't get in to see this doc until sept
i nearly had a coronary when i heard that
i told the office that i wouldn't have any hair left to examine if i had to wait til sept
that earned me a new time slot of mid july
until then or at least until i see DR H, i'm seriously considering not washing my hair. after all, hair washing has become a
traumatizing event. somehow my head just feels a lot balder when it is wet...and it's dangerous to boot. the clumps of hair clog up the drain so bad that by midway through my shower, i'm standing in ankle deep water. who knows, i could drown! can you blame me for being tempted to go on a shampoo diet?

the humor of my hair loss is now lost on me
because it is just that. a loss. another loss in a long litany of losses that i have had to face. one more loss to assimilate, to accept, to surrender to and to grieve over. and i am upset by that. i've had a hair cut a grand total of 3 times in the past 3 or so years. partly because i was either too sick to go or to care. partly because there was no point in having a hairstyle i was too sick to style or maintain. and so i've just let my hair grow and grow and grow. and i made myself okay with that by telling myself this long hair thing was a novelty because long hair is not something i have ever had. (ok, except like when i was 4). but my long hair is not something i was ever attached to it. (evidently, it is not that attached to me either.)

while i'd be the first to acknowledge that my egg shaped cranium would not bode well for being an attractive look on me, my looks are not high on my list of priorities these days. so no, i don't believe my angst over my balding state is an issue of vanity rather it is rooted in the thought that getting a hair cut was going to be part of my wellness celebration; a shedding of all things lyme, out with the old, in with the new. and now i feel, well, royally ripped off.

lately, my strength has been coming back and more and more, letting my hair down and ridding myself of my standard low maintenance bun in exchange for an actual hairstyle was seeming like more and more a do-able possibility
and now
my bun has become my proverbial combover

if i am strategic in the arranging of my bun, i can cover up my patchy spots
i also happen to think my hair still appears thick when it is wadded up on the top of my head in a matted mess
of course,most likely, i am just in denial
i'm sure most men that sport comb overs think they do a fairly good job at masking their bald spot too.

my family is begging me to off it
lop it off, hack it off, buzz it off, shave it off
anything to save them from drowning
in hairballs
and me?
well, i'm stubbornly hanging on to my comb over
until further notice,
i'm avoiding my own near drowning by donning a shower cap and going on a shampoo strike

May 15, 2010


would be nice if the breaking news was that this was a long overdue update.
after all, it's been several weeks. again. sigh.
there is a lot of news to catch up on. sigh.


life it seems is an overwhelming series of physical and emotional ups and downs - experienced multiple times per day. i feel like i am on a giant pendulum that swings from high to low with little, if any, humdrum in between. the shifts happen so fast and so frequently that a celebratory leap in the air is often followed with a crash land back to reality - life, right now, is a conglomerate of cut you off at the knees pain & grief and celebratory moments of amazing, breathtaking ability.

i don't cope well with these frenetic shifts between high and low. i try to 'compartmentalize' but i find every compartment is affected and involved. somehow the good and the bad, the happy and the sad, all end up intertwined and i can't tease them apart long enough to write about any of it. in the few seconds it takes to boot up the computer, i've gone from elated to deflated and can't reboot myself...mundane, mundane, please give me the mundane...

sure hope i can find a few mundane moments in the next couple of days to carve out some time to sit and think and write about it all
until that happens, i wanted to share other breaking news...

and, no, it's not that George has been spotted in a tiara...but if this and the other photos contained in this post pique your curiosity then feel free to read on. it'll all make sense in short order.

we've had the honor of being featured in our local city newspaper. the Richmond News is doing a 3 part series on our family's journey with lyme. the first story came out wed (may 12), the second friday (may 14) - and i believe the final article will come out either mon or wed of next week.

this series came about because the kids in parker's class asked the newspaper to do a story about parker. (more about it is explained in the newspaper) parker has only been at school about 30 days total for this entire school year. that he continues to be in the forefront of his classmates thoughts is really a testament to his teachers, mrs s and mrs b's tireless and creative efforts in ensuring that he remain part of the class. from the senbazuru, the 'class made' soups, get well cards to the class blog (the list goes on and on) they have really gone above and beyond the call of duty. they should be applauded. given a standing ovation really. in fact, the entire school should be; from the parents and student body, the administration to the school counselor, mrs k and avery's teacher, mrs g; both of whom have been wonderfully sensitive and attentive to avery and have done an outstanding job in supporting and helping her cope. the school's willingness to come alongside us and walk this journey with us has been an amazing blessing. words can never express our gratitude. i am so happy that the Richmond News has acknowledged their efforts. alan, the reporter, wrote a beautiful and very fitting tribute.

Read all about it here: 1001 WAYS TO WISH GET WELL SOON

mona and napolean
2 grimly smirking companions

1001 ways to wish get well soon was actually the 2nd article in the series. but somehow i thought it seemed more fitting to 'lead out' with it as the first one here on the blog. besides, i seem to do things backwards lately anyway. the first article was about our family's life with lyme...and the first few paragraphs ended up being a fairly descriptive epilogue of our home. all i kept thinking while reading it was,

"thank goodness, i tidied up and swept the floors before the reporter came over. the guy is super observant."

my relief at having listened to my inner voice that morning was palpable. you see, i had seriously debated the necessity of expending my energy on tidying the house. as i surveyed my dusty, food encrusted floor i kept thinking,

"save yourself shan! who cares about a little dirt? after all these are men that are coming over. men don't notice such things."

ha ha ha ha.
apparently some men do.
and then, horror, they write about it.

is it marilyn or albert?

without further ado, and because i did the 10 second tidy, i give you the link to the article about our home and lyme:


(if you caught the vague reference to famous british humor - you are not mistaken. it is no coincidence that the article shares the same title as a monty python sketch. both graham and alan bonded over a shared love of all things python.) insert *me rolling eyes* here

both articles have been really touching. if you have a few moments to spare, we've been asking folks to please send a thank you to the reporter and /or if you or someone you know is fighting lyme please speak up by sharing a brief account of your/their story.

reporter's email:

Richmond News feedback:

this is a huge opportunity to thrust lyme disease into the lyme light. past experience has taught that if one media outlet's story generates a large public response than it is more likely that it will be picked up by other media outlets. indeed, no sooner had the 2nd article come out on friday morning, then we had a call from a reporter at the vancouver sun newspaper. not sure if anything will come of it but they are definitely sniffing around ;)

we certainly hope that the media attention will be one more loud clang in the alarm that lymies across north america are ringing and that it will eventually be the catalyst that provokes change - but more importantly, working to keep lyme in the glare of the public spotlight will bring about a greater public awareness. awareness and education about lyme saves lives. and that is really the bottom line.