well, our travel day got off to an eventful start. do we ever do anything drama free? simple? easy? uncomplicated? umm. no. trouble seems to follow us. today, was no exception. our flight to SF was delayed by 3 hours. i nearly had my nexus pass revoked and was almost fined $300 at customs because i forgot to declare my rice cakes. is it any wonder that the primary issue i work on in therapy is de-bunking the myth that "NOTHING is every easy" and "WHY is EVERYTHING ALWAYS complicated?" and "EVERYTHING ALWAYS goes wrong." sure it feels like that a lot of the time but those are totally self-defeating mantras and they are not true. but, honestly, how do i overcome those lies when i keep running in to roadblocks that reinforce them?! i started writing this post in the airport but decided to wait to publish it until we had actually arrived safe and sound in our hotel room. aside from the fear that something else would happen, i had serious doubts that i would be still be of sound mind by the time we landed at our hotel...even if no other unforeseen incident occurred. but sure enough, we encountered 2 more slight hiccups before we safely landed in SF. at the boarding gate, just as the flight attendant was checking our tickets avery turned around and shrieked, "oh no, mom, did you remember to bring the GUN?" i kid you not. time stood still. the word "gun" hung heavy in the air; it shrilly reverberated in my ears like an announcement on a cheap PA system i froze. mouth gaping. heart pounding in my ears. "avery! i don't think i heard you... but don't repeat yourself!" i squawked... a deer caught in headlights.
"i meant GUM! GUM! Did you remember to get GUM?" she whispered, sparkling eyes wide with surprise this flight has aged me exponentially.
we boarded the plane. i had just sunk into my seat and was in the process of heaving a sigh of relief...when avery suddenly shrieked,
"MOM, MOM, i'm getting a nose bleed." sure enough. nice gusher.
the rest of the flight was without incident. or at least, i think so. if there was - i didn't see it. i closed my eyes and didn't open them again until we landed. ignorance is bliss.
even with all of the hiccups, i am grateful for this flight. somehow amidst all the delays, complications and stress of it, it is a blessed flight. blessed? yes. the cost of this flight was covered by air miles donated by a good friend. he also has lyme, must travel out of country for treatment but still donated his air miles to us. and a young family, used air miles to secure and pay for a car rental for us. i won't lie, we held our breath until we had secured the keys to the vehicle... and, most important of all, it was a massive car boat. car boat rentals are as legendary and as big a part of our SF trips as DR H and In-n-Out Burger are. we were thrilled it was a true to form car boat. the kids fit perfectly in the trunk. graham and i enjoyed a nice, quiet ride to the hotel. kidding.
we are forever being amazed at how folks allow God to use them to bless us. it is humbling. this road is hard, painful, challenging and yes, a lot of the time, it feels like EVERYTHING is going wrong and this nightmare will NEVER end...yet, blessings are undeniably intertwined through out this road we travel. they serve as the shimmering beacons of light...and when i focus on the hope, faith and love they represent, their sheen outshines the darkest parts of this journey. yes, the blessings are many. THAT is truth. my heart believes that. it is the journey from heart to mind that can get a little tricky - the roadblocks along the way can sidetrack me from the standing in the truth. speaking of roadblocks...one last thing. this has nothing to do with air travel but it has everything to do with delays and complications.
the day before we left for SF, we received a phone call from the hospital where parker's MRI is scheduled for dec 11. the hospital was calling to CANCEL the appointment because they had a flood. i kid you not. no back up plan was offered. the situation is complicated as this is the only hospital that does MRI's on children - aside from children's hospital - which we do not feel is a safe option. this means we may now need to incur the cost of paying for a private MRI. it is ridiculous. parker's MRI is marked as URGENT. suspected encephalitis is on the requisition. please be in prayer for this. even as we sat in the airport awaiting our flight, we were making phone calls to try and get this sorted out. it shouldn't be so hard. really.
we had such trouble securing this MRI appointment to begin with and then a flood happens? what are the chances? for some reason, God continues to allow us to walk the road less travelled. at the moment, my mind is semi-panicked over the details but i choose to believe God will work this one out too. after all, he ALWAYS does
i have some exciting news to share! there is a documentary about Lyme in Canada in the works! Merit Motion pictures is shooting the documentary for CBC's The Nature of Things with David Suzuki. isn't that just super? the documentary will air on The Nature of Things in Fall 2013. back in early spring, parker had come to us and said that he wanted his voice to be heard and his story to be told. then a few months later, i was contacted by one of the producers from the Nature of Things and the opportunity for parker's story to be told fell into our lap. at that time, they were just starting to research Lyme disease... and were quickly learning that the scope of the lyme issue is huge and very multifaceted. at that point, they were considering addressing how global warming is impacting the spread of ticks in canada and how this has dramatically increased the risk factors for canadians and how the government and medical profession is woefully unprepared to handle this alarming and growing epidemic. they wanted to feature one or two families that had children whom have been impacted with lyme as part of their documentary. our name had been forwarded to them. by the time the producer contacted me, i was pretty surprised by how much of our story she already knew. apparently, prior to contacting us, she had read a fair bit of my blog. the story that had caught her attention was the one about harrison being treated for lyme this past spring. (read here - bittersweet juxtaposition) so yes, the dog has earned us an appearance on national tv. he's referring to himself as our agent now and trying to collect fees.
i've told him when he starts picking up his own poop, then he'll be in a position to negotiate. anyhow, back to the nature of this post...contrary to what he thinks, this is not about the dog. last week, i spoke with another producer and the director of the Lyme documentary and things are moving full steam ahead. over the past few months, they have been all over canada and the usa interviewing many lymies, scientists and lyme doctors. they even sent a crew to the ILADS conference in Boston. this is a huge conference and ILADS is the medical society that focuses on the latest in lyme research and trains doctors on how to treat lyme. the crew also spent a fair amount of time back east in Manitoba. they interviewed patients there and our canadian lyme hero, dr ernie murakami. this is the doc who originally diagnosed me and treated me briefly before he was forced to retire his license. (read about that here) dr murakami is a remarkable person and we all love him dearly.
this coming week, the crew and director from merit motion pictures will be interviewing our family in our home as well as filming us during our upcoming trip to SF to see DR H. we fly to SF on wednesday (nov 28)and have appointments with DR H this thursday (nov 29) and the film crew will be there to capture it all. oh boy. we are very excited that DR H has agreed to be interviewed. this is a huge deal. i am quite nervous that he will have second thoughts and back out at the last minute. pray that he doesn't! there is such significance in him being interviewed. it is one thing for us to tell viewers how sick we were/are but there is a ton more credibility attached to our experience when it is backed up the treating physician. additionally, having him weigh in on the lyme issue is so important as the medical opinion of non-lyme doctors is sure to be represented. david suzuki is a well respected and renowned environmentalist. i believe he is very influential and for him to be 'on board' with shedding light on Lyme disease is a remarkable platform. we are so grateful to be given the opportunity to share our story. we are excited but very nervous too! please pray that i can speak articulately and effectively and wisely communicate the issues at hand. i want to tell our story in a way that will spark awareness of lyme and leads to the recognition of lyme in canada and ultimately sheds light on the plight of thousands of patients in canada that are suffering...we are but one in a sea of faces in desperate need of change. filming will take place in SF (our hotel and DR H's office) this thursday. we will arrive home on saturday (dec 1) and the film crew will spend sunday and monday (dec 2 & 3) in our home. many thanks to my friend maureen who is donating her time and cleaning skills to getting my home camera ready.
parker continues to be ill. thankfully, we *think* the actual decent has been halted. we even *think* he may be on his way up. this means his pain and fatigue are no longer getting worse. he still sleeps late into the day and spends most of the day in bed and he is still in a boatload of pain. yet, the high intensity attacks (where he has to crawl to get around) are not happening as frequently nor are they getting worse.
i type *think* because things here change in the blink of an eye. every time we *think* things are looking up, he has another flare and we find ourselves tumbling back down into another dark hole. last weekend is a perfect example.
on saturday he was a bit perkier. he was in bed nearly the entire day but his pain was less intense and more manageable. he begged us to arrange for his cousin (same age) to come for a visit. his current relapse and bed bound state started sept 20. that was the last time he spent any time out of the house or with kids his age. he has been far, far too ill to have even been able to tolerate company. i suppose the fact that he even felt "up" for a visit is an indication that there has been improvement. and that the visit actually happened should be viewed as monumental sign that, on some small scale, he is feeling a bit better.
the company and the copious amount of video gaming provided some much needed distraction. the visit helped with the loneliness factor too. yet, interspersed between gaming, he'd quietly seek us out or curl up on the couch racked with pain. he'd rest, gather up strength, then will his body upright and put on a brave face. for what? to shoot up the enemy on the screen or shoot the buzzer beater in an imaginary on-screen basketball game. to be with a friend. to do. to be. just for an hour or two. imagine having to fight with all your might to just be a kid. the desperation for that can drive the body for brief interludes. yet, i know there is a point when the body cannot be willed to do - no matter how desperate - not even for the briefest of interludes. that has very much been parker's reality since sept 20. that visit occurred last weekend. we *thought* this was a sign that he might finally be turning a corner but in short order, everything intensely flared again. evenings tend to be the worst. they bring with them intensifying joint pain, shortness of breath, rages and faint-like episodes. and so it goes. the last 72 hours have been better.
we've managed to do a bit of school work. a very, very tiny bit. (i'm home schooling him again this year) since mid-october, school has been a futile endeavour. this has been incredibly disheartening. prior to this relapse, he had been plowing through an incredible amount of work each day. it took an enormous amount of energy and perseverance on his part but his ability to *think*, process and recall material day to day had improved by leaps and bounds since we wrapped up school late last spring. to "lose" all of that again has been very discouraging. he got out of the house twice this weekend. short trips. but he got out. aside from doctor's appointments, he'd only been out of the house once since sept 20. he's back to harassing and teasing his sister. we *think* that is a good sign. yet, even as i write this, i know that things could spiral downward again. it's 12:30pm and he's still not awake. i don't know what today will hold. i suppose none of us really do. but i hope today will be better and tomorrow and the next and so on and so on. i *think* he may truly be crawling his way out of this massive relapse because we are finally treating him for the cause. and the cause? multiple viral infections. the diagnosis based on a multitude of lab tests and a thorough exam by DR D (seattle doc). (we took him down to seattle to see her about 10 days ago.)
long drive to seattle
DR D prescribed anti-virals he's been on those meds now just over a week. we *think* that this is helping. we hope. always we hope.
unfortunately, his eyes (the nystagmus) has gotten worse. the viral issues are just part of the puzzle. we *think* they are responsible for this landslide relapse. but as far as we know the nystagmus is a separate issue. several doctors have been consulted and they do not believe that viral issues cause nystagmus. google says differently. but google agrees that viral issues are 1 of 3 causes. none of the other causes are things one wants to *think* about.
i *think* it'll be okay. our doctors *think* an MRI is absolutely necessary but they *think* it'll be okay. MRI has been scheduled for dec 11.
but it's getting worse. he was seen by an optometrist on friday. the optometrist *thinks* there is definitely something wrong. he referred us to a neuro-opthamologist. that appointment is scheduled for dec 27.
here's what i *think* i *think* that the wait for those appointments feels like an eternity. we're on cancellation lists and hope that we won't have to wait until then. i, also, know that i *thought* he needed to have an MRI before the nystagmus occurred.
then, a few weeks later, the nystagmus presented and this sudden landslide relapse began and it's earned us an urgent referral for an MRI. and yes, dec 11 is considered an "urgent" date i am thankful for that. i'm sure you are *thinking*, "hold up, what? you mean you are saying you *thought* he needed an MRI prior to the relapse and nystagmus?" yup. why did i *think* that?
just before the nystagmus started, our GP noted that parker had lymphocytosis (elevated b cells) he didn't *think* this was particularly concerning it is reasonable to assess that the counts are out because of lyme (and viral issues) however, we saw an immunologist who *thought* this warranted further investigation he ordered specialized labs and those came back abnormal i spoke with the immunologist this past week he does not know what they mean and has had to consult a pediatric immunologist waiting to hear back on that but he thought that an MRI was definitely needed
i *think* it will all be ok but quite frankly, i don't know what to *think* anymore
i don't know why i had that gut instinct about him needing an MRI in the first place. i don't know if that feeling was based on fear or an actual intuitive sense that something, in addition to lyme, is going on. i *think* i can't *over think* this i *think* it'll be ok i *think* i have to *think* that to get thru today
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