I WANT AN EASY BUTTON

we've been back from SF for nearly 2 weeks now.

nothing about this journey is easy. nothing.
but
THIS was supposed to be easy
this setting up "all things IV treatment related" for a second person for a second time around was supposed to be easy.
why?
because i've done it before

those first few months, after my own care started coming out of the usa, were a total nightmare. we faced road blocks at every turn. it was a fight to get my iv meds, to get nursing care, to find a pharmacy that would cooperate, and find the cheapest IV supplies, etc, etc, etc...ALL of that amounted to hours of phone negotiations and months of stress.

and now we knew we were facing it all with parker. but this is our second time around and we know better, know where to go, know what to do, know what to expect. hek, i even 'coach' and assist other canadian lymies on the ins and outs of out-of-country treatment when you have been abandoned by your own medical system. i have taught others how to run iv, how to reconstitute meds and where they can obtain all those supplies. i'm practically a pro at this now - after all, i've been doing it for 2.5 years.

so THIS should be easy.
after all, i know. i know how to deal with this. i know what to do and where to go. it should be easy
or so i thought
why i even entertained that thought is insane
probably because
i hoped that it would be easy
i NEEDED it to be easy
i didn't think i could cope if it wasn't
please, lord, can't something just simply and easily go as planned?

after all, this transition is difficult enough emotionally, without having to deal with the mental and physical exhaustion that comes from having to jump through hoops and scale towering walls. in order to make the transition as stress free and run as smooth as possible, we endeavored to pre-arrange as much as possible BEFORE we left for SF. we thought we had dotted our "i"s and crossed our "t"s and tapped our proverbial easy button.



we phoned a pharmacy and explained our situation the week before we left. we ensured parker was in their system and told them to expect a fax for the IV meds from DR H's office the following week. we arranged to do it this way because this would give the pharmacy plenty of time to order in the meds and fill the prescription (iv meds are not something most pharmacies have in stock.)

we arranged home nursing care for parker's picc line. we ensured that the doctor's order that would be needed to set up that process would be faxed in the day of his surgery. that way, when we arrived back in canada, that request would have already been processed and the service would be ready to go.

it was absolutely crucial that both of these transitions happened without delay. the IV meds because parker was already started on them while we were in california - having a delay in a treatment that is aimed at penetrating the blood brain barrier and targeting the infection in his brain isn't something you want to mess with. the nursing care needed for his PICC line is a no delay zone too- for a healed PICC line insertion site, the dressing must be cleaned and re-sterilized every 7 days. post surgery, the incision bleeds and a dressing may need to be changed more frequently than once a week. we knew we would only have a handful of days between returning from california, before parker's dressing would be in need of a change. and arriving home at the start of a weekend made that even more challenging which was why we had worked so hard to pre-arrange everything ahead of time and during regular business hours.

we arrived home on friday evening. first thing saturday morning, we called the pharmacy. we expected that parker's meds would be ready for pick up (even on a saturday) because they'd been faxed in from DR H's nearly a week earlier. they should have been filled and ready for pick up. nope.
apparently we were supposed to call the pharmacy once they were faxed and give them the verbal "please fill"
we thought that was what we had done - we thought this would be easy.
nope.
and of course now it was a weekend. nothing had been ordered and the actual pharmacist was not in until monday. i had enough back up meds to last a couple extra days but it didn't relieve the stress and panic i felt. it was disconcerting and it wasn't easy to have to wait until monday to get the ball rolling.

when we called monday, the pharmacist in charge of orders was off sick.
so much for that. i had a total breakdown.
why can't anything be easy?

i want an easy button.

and never mind that once the prescriptions were filled, they had to be picked up, from 3 different places, and included a trip across the border and we don't have a vehicle anymore.

we arrived home (from SF) to our message light blinking. messages from friends checking in on us? we hoped but nope
rather there was a single, solitary message from ICBC, purveyor of the low balling insurance payouts.
they wrote off our van and the cheque they were cutting us for it was pitiful.
beyond pitiful.
and totally unfair in our eyes.
oh how we had prayed we'd get a fair settlement.
that would have somewhat eased a really tough break.
but nope
it would be a long shot, but we could possibly afford a 1973 pinto with our payout.


one can only dream
and
dream is about all we can do.
we just can't afford to buy a vehicle.
we don't know what to do
we don't have an easy button or a magic wand
so we're making do without.
which really isn't making do at all.
but what ever.

i did the easiest thing to do. i had another meltdown. i do it well.

call it intuition or maybe just a negative mindset, but with all my carefully pre-arranged plans derailed, i began to feel really, really uneasy when we didn't immediately hear from the nursing service that would be taking care of parker's PICC. this is a 7 day a week service. so our arrival home at the start of the weekend, when the order for care had been sent in a week earlier, should not impact this.

so i nervously called them. i didn't want to but i had to. after all, parker's PICC HAD to be changed sometime in the following 24 hours. i could barely dial the phone because i was shaking so hard. i had a feeling i was in for a fight. i was right. it was the start of a day long phone battle. i was met with skepticism, had to jump through hoops, fax them this, get them that, answer a million questions that i felt were none of their business and not at all relevant to maintaining his PICC...all of this, despite the fact that the home care service had orders in hand from a canadian doctor to maintain parker's PICC. (initially, they even told me that they hadn't received it.) setting this up should have been easy. it was anything but. it took a ton of back and forth phone calls that required me to stand my ground, hour after hour. after every phone call, i would dry heave for 15 minutes. my first phone call to home care was at 10am. i didn't get their assurance of nursing care until 2:45pm.

it was supposed to be easy.
i want an easy button.

we'd been home only 4 days, and all i wanted to do was turn tail and run back to sunny hot california
at least when we're there we don't have to fight for care
at least when we're there, we have a car to get around in.

running away to california, while tempting, isn't an option, so i did the next best thing. i buried my head under the covers and wept and wished for an easy button. did you know that crying under a down duvet, creates a hot, humid environment? for a minute or two, it kinda felt like i was back in the blessed SF heat wave. that was nice. then i began to worry that my tear soaked pity fest was probably creating a nice environment for bed bugs to breed in. don't laugh. you just wait. i bet that's coming next.

hopefully not.
and anyway, i couldn't afford the luxury of a marathon length break down anyway, it was 2:45pm and i had to leave to pick up avery from school and i needed to touch base with parker's teacher. his attendance at school is sporadic at best. the goal is for him to get to school for as many afternoons a week that he can manage. so far, the most he has attended was 3 afternoons in one week. and that was a 'good' week. whether or not, even attending for 1 or 2 afternoons is sustainable or not, no one knows. realistically, now that he has started iv he will get a lot sicker, will herx a lot harder and his attendance will be even more infrequent.

maybe
maybe not
but most likely that will be the case

that's not me being negative
of course, we hope that his body will respond swiftly to treatment, that herxing will be manageable and 'good' days are not that far off.
but that is rarely the case.
that is not the nature of this beast called lyme
IV has declared war on the bugs
they do not die without a fight
our body is the prisoner of that war
that is not negative thinking
that is the reality.
as much as we don't want it to be, that is our reality. parker's reality. and i have to plan according to that.

his education (or lack of access to it) is something i lose sleep over every nite. mercifully, we have no pressure from the school. and for that i am grateful. there is great understanding and compassion but there is also a great lack of resources available due to budget and funding cuts. last year we were lucky enough to have a home bound teacher come in once a week. it took until march to get it, which was hardly enough time to make a dent in what basically amounted to a whole year's worth of missed instruction but at least it was something. and the home bound teacher was amazing. the entire focus of their hour together each was week was math. thank God! i can barely do math above a grade 2 level so forget teaching 5th grade math. i tried and it nearly killed me.

as the school year wound to a close in june, i was under the impression that this hour long, once a week instruction would continue. i was told it would. and i was relieved that it would be something that would start up with the onset of the new school year. after all, we have a MAJOR deficit to make up for here. it stresses me beyond belief. and i am no teacher. i NEED him to have a teacher teach him.

so i thought that it would be a lot easier to get the ball rolling on it this year.
but i don't have an easy button
and neither does parker's teacher
no one does
and
there is no funding or home bound teacher available for parker this year.
i don't even know what to do or where to turn. i think that there has been some resource time allocated to him. but one has to actually be at school as resource time is something that happens during school hours AT school.

i want an easy button
and
i don't have one
i picked up the phone and called my poor mother and bless her heart, i subjected her to meltdown #4 or maybe it was #104. i've lost count.

in the midst of it all, avery has been melting down on a daily basis since our return. great, big, long and LOUD meltdowns. but who can blame the child? after all, she has me for a mother and i'm doing a stellar job of modeling that behavior.

i just feel sick. sick about it all.
and
i feel like one big failure.
i should handle all of this.
i can't afford to not cope, to lose control or to give up.

this is not easy
and i'm pissed about that.
i want an easy button
and i resent that i don't have one.

i feel increasingly isolated and lonely and inept and incapable.
and
i am tired.
earth shattering lyme tired

i am emotionally drained
and
i am spiritually desolate.

i feel abandoned by God.

oh i can still be funny and laugh
but inside,
i feel hollow, brittle and bitter.
and my feelings are controlling my thoughts
and
they distort truth.

something about having the expectation that life SHOULD be easy does that to one
and
it leaves you increasingly depressed

something about feeling like you are ENTITLED to an easy button does that to one
and
it leaves you completely pissed off about anything and everything.

and it leaves you faced with mounting questions
and
no easy answers

i suppose i need to revamp my attitude.

and maybe i will
but i think i need an easy button to do that.

THE BEARDED BANDIT

we're home

our flight back was nearly event free

if you don't count getting felt up, patted down, poked, prodded, swabbed and x-rayed at security an event.
but i do
that event happened to me
uh huh.
taylor decided to grow a beard this week -


i don't know what was behind this hair brained idea but all week he kept talking about wondering if his beard would attract attention (the wrong kind) at the airport
nice
I'M THE ONE who ended up attracting attention and ended up being unduly scrutinized by security. taylor was standing next to me as we passed through security. it was obvious the bearded bandit was accompanying me. guilt by association. that's what i figure.

maybe next time we're away, i'll grow a beard and see how the rest of them fair. if i fill the rogaine rx i have in hand (to deal with my hair loss) then that is actually within the realm of possibilities. after all, it lists beard growth in women as a side effect.

no sooner were we finally through security than we saw it. a mural size picture of graham. from glasses to goatee, the resemblance was so uncanny, that we had to get our own picture.


but you would never believe what graham did in order to get that shot. there was a guy sitting in front of the mural. it was obvious he'd been hunkered down there for awhile. he was definitely settled in, working on his laptop. but he was kind of in the way. i figured if we took the picture at a creative angle, we could get a 'good enough' shot. it wouldn't have been great but i was wanting to be subtle. after all, i'd had my fill of attention already. graham, not so much. he walked over to the guy and said,
"sir, right behind you is a picture of me. and i'd like to get a photo of me in front of the picture of me."
i nearly died of embarrassment... for the second time within 15 minutes.
but
the guy was obliging and moved for us. as the guy was shifting all his stuff out of the way, graham casually mentioned that it wasn't really him in the photo. the guy looked a little perturbed after that. i snapped the photo as fast as possible and high tailed it out of there.

the rest of our journey home went without a hitch. almost. if you don't count the fact that i nearly had a heart attack upon take off. something about the sound of very loud rattling, followed by a massive bang, followed by parts of the airplane, that should not be airborne, skidding down the aisle toward you and coming to a rest under foot, leaves one slightly unnerved.


i don't care that the flight attendant said that the airborne missile was nothing of consequence. and that it was just a part from an old coffee maker. i was white knuckled the rest of the flight and wondered if i was possibly seeing my last sunset.


our friends, dick and tina, picked us up... the same friends who drove us to bellingham 6 days ago, the same friends who ended up waiting in a border lineup for an HOUR and HALF to get home, they graciously braved the border again on our behalf. we are humbled.

mercifully, there was no wait at the border.
so, we've pretty much arrived home with relatively little hoopla...minus the embarrassment of securing that mug shot of my goatee sporting husband, minus the minor indignity i suffered due to the bearded bandit and minus one so-called inconsequential airborne missile.

i'm RELIEVED to be home
and
parker and i are running IV together.


this is the first time we're running IV together, in canada, in our home, on our convalescing couch.

WHAT FUN?!?

so our stay in SF is nearly done. we fly out this afternoon at 4pm. or i should say that is what time we hope our flight leaves. after the 9 hour delay we endured last time, we're (understandably) lacking a little confidence in our air carrier.

this has been quite the trip. it's been surprisingly good and not nearly as stressful as i anticipated it would be. and it's been fun even though we haven't done much else besides spending copious amounts of time in doctor's offices. in fact, about the only time we left the hotel room was to go to doctor's appointments or to eat. we haven't done anything touristy. we definitely haven't done anything fun - unless you count a little shopping excursion as fun. of course, that one is a matter of perspective. i'd say shopping is loads of fun. the boys do not share my enthusiasm. they would've preferred to stay holed up in our hotel but i "made" them go shopping. they needed shoes and shoe shopping requires the prospective feet be present.

and by need shoes, i mean NEED shoes. especially Parker.


how on earth that boy managed to wear out his shoes - and to this degree - when he has spent nearly every day of the past year in a wheelchair is beyond me. seriously. i cannot for the life of me figure this one out.

sparky's new shoes

i got shoes too. mine weren't much better off than parkers. they have holes in the toes and on the heels. i've creatively 'patched' them up several times. yes, money is very tight but no, i'm not so hard done by that i couldn't buy a new pair - it's just that these are the best shoes ever made. you know, they are "the" shoes. that magical pair that look good, are slightly unique, go with everything and are actually incredibly comfortable. shoes like that are near irreplaceable. one might even say, once in a lifetime. so i don't want new shoes - i want the same shoes. a new pair of the same ones. i've trolled ebay, i've searched the company website, i've tried googling them but to no avail - after 6 years, they appear to have gone extinct.

my oh so worn out but oh so wonderful shoes.

so finally, i have (begrudgingly) conceded defeat and bought a replacement pair. i like my new shoes. they are cute. they are spiffy. they go with everything in my wardrobe. they are super comfortable. and they were cheap. but they are not "the" shoes. maybe, just maybe, they will become "the" shoes. but i can't let go of my great affinity for my old shoes. they really should go in the garbage. but they won't. not yet. for now, i've packed them up and i'm taking them home.

we got taylor new shoes too.

um, yeah, okay, those are not shoes.

he didn't really need them but you just can't find bargain basement prices for size 13s too many places. he's picky to boot and has a very unique sneaker style.



so besides doc appts and the shoe shopping excursion, about the only other time we were able to coax the boys out of the hotel room was to eat. or more accurately, to eat at in-n-out burger. last time we were in SF, we were accompanied by avery - the world's pickiest eater ever. the boys really wanted to go to in-n-out burger. we weren't familiar with in-n-out burger establishments - nor with their clever, yet simplistic concept. they serve only burgers.

3 meal choices available:
burger
cheese burger
double cheese burger

avery does not do burgers.

we literally were in and out of in-n-out in 3 seconds flat. the boys are still bitter about it. they figure the indignity of being THAT close but still denied from last time entitled them to more than one meal at in-n-out this time.


we ate there 3 times this week. THREE.

that is scandalously horrifying from a nutritional standpoint but it earned us big points in the parenting department - which was nice - feels more often than not our parenting decisions aren't too popular. and it doesn't hurt that parenting popularity only cost us $4.95 for a complete meal.


i guess we made up for those gastronomical atrocities by eating most of our meals in our hotel room. it's amazing what you can make, even when your room is only stocked with a coffee maker and fridge. had oatmeal every morning. made it in the coffee pot. we tried to clean up after our meals as best as possible - which meant flushing left overs down the toilet. what else do you do with a half eaten bowl of cereal? even with daily housekeeping, perishables in garbage cans smell up a room pretty fast. so, yeah, we used the toilet as a garberator. didn't work so well. we had to call for plunging services 3 times. ha ha. we felt only mildly bad about that. for the first half of our trip we were rather bitter about our hotel. we always use priceline.com to get a hotel. the clincher with priceline, is we never know what hotel we're getting til we pay for it. risky, yes. but superbly cheap. we have rarely paid more than $50 a nite and have gotten nice hotels.

the last three trips, we have actually fluked out and gotten the same hotel. a radisson. very nice. clean. comfortable. not stuffy. has some interesting 'night' life. has provided free entertainment in the form of 911 calls. police running down halls with guns ready. pounding on the door of the room beside us. but that only happened twice. and their response time was very fast. and i found out that putting a glass to the wall, really does allow you to hear through the walls. this time we weren't lucky enough to score another stay at the radisson. we bid every day for 3 weeks with our usual 50 dollar low ball offer. no luck. rejected. finally, 2 days before our trip, we had to acquiesce and up our bidding price by a couple of bucks. we ended up getting a marriot.


we thought cool. high end hotel for low end price. yeah. sure. until you check in and find out the parking is 18 dollars a day and the internet is 10 bucks a day. all of that is FREE at the radisson. harumph. our room was nice. pretty. but the tv was an old fashioned box with basic cable and the sheers were shredded. but the furniture was impeccably dust free.


anyhow, once we peeled ourselves off the ceiling and simmered down over the add-ons, cooler heads prevailed and we found away around them. i found parking on the street. for freeeee. and wi-fi in the lobby. for freeee. the toilet plunging issues were somewhat embarrassing but very entertaining. and that was free, too. oh, and let me not forget to mention that the shampoo, body lotion and soaps were from bath & body works. and if you "used" them up every day, they replenished them. for free. i have a nice supply stockpiled in my suitcase for when i get home.


so by mid week, i'd say the marriot and all it's inconveniently attainable freebies, had grown on us. we enjoyed our stay. the lobby was pretty - and at night they had candles lit everywhere. loved that.


and they had a really nice outdoor pool and deck area. graham and i were able to snag a bit of time by the pool on our first day. which was great as we managed to land smack dab in the middle of a massive heat wave - 101F! amazing. i love the heat. this was the first time ever that i have not been cold in SF.


speaking of heat wave, have you ever left a can of pop in a hot car all day long? we did. we forgot a can of pop in the trunk of our boat car on one of our all day outings to DR Hs. after a long day we arrived back at the hotel. while disembarking, the boys discovered the can of pop. the very, very, very hot, somewhat expanded, contents under pressure, can of pop.

graham told them not to open it because it would explode.
big time explode.
dumb thing to say to boys.
telling them that, was all the encouragement they needed.

go ahead, boys.
detonate the can.
(secretly, i wanted to see how massive an explosion we're talking here.)
as a precaution, i told taylor to open it far, far, far away from me.
so with bated breath, arms outstretched, body arched away, can pointed away, and head caulked to the side, taylor bravely detonated the can....

the stupid can did not explode
it released only the minutest, most pathetic dribble of fizz
massive let down

taylor was so choked, that he threw the can down. hard. really, really hard.
that did the trick.
MASSIVE EXPLOSION
rootbeer everywhere.
i mean everywhere.
it rained rootbeer.
taylor was drenched.
graham and parker got sprayed.
the car was spattered.
and i had multiple drops dotting my legs and arms - and i was standing 6 feet away.

it was just about the funniest thing ever. i'm not sure what was funnier - the unexpected explosion or taylor's glee over it - that boy was practically prancing in the fizzy droplets as they dropped from the sky.

taylor - just minutes after the rootbeer explosion.

so yeah, we didn't really do anything touristy or fun - but somehow we've managed to have a lot of fun. go figure. yesterday, taylor summed it up best when he said, "wow, we've had a lot of fun basically doing nothing."

i couldn't agree more.