October 13, 2010


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

nothing about this journey is easy. nothing.
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.
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.
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
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 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
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
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.
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.
i am tired.
earth shattering lyme tired

i am emotionally drained
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
they distort truth.

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

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

and it leaves you faced with mounting questions
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.

1 comment:

FourMileFarm said...

Crying with you...
...and praying for you all!
I understand how much harder it is when it's your child that you are trying to get help for...
We are in Texas, but we dont have access to a LLMD either. Insurance won't cover anything, and since my husband has been unemployed for 2 years we have NO way to pay out-of-pocket. So, here we sit, with a bedridden kid....and NO way to get help for her. NONE.
Our medical system absolutely sucks. Errrr.... stinks I mean. Sorry.
I think of you all often and check frequently for updates, and pray alot!