GOJDEN GATE AYHDGE

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.
psshhht!
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

SAYLOR'S RESTAURANT & BAR

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

DANCING IN THE RIPTIDE

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 me...you 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.

BOATING IN SAN FRAN

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.