we had the opportunity to get away to a friend's condo in the Kelowna area this past week. we were grateful to take take a trip that does not, (er, well was NOT supposed to) involve doctor's appointments or medical treatment. since we started having to travel to the USA for medical treatment in 2008, much of the hubster's vacation time has been eaten up by trips to Seattle, WA to see DR D, San Fran, CA to see DR H or other medical related travel and doctor's appointments.
the past several months have been a chaotic gong show. parker's relapse, another family member's extended hospitalization, my own ongoing health challenges have really taken a toll. especially on the Hubster. so we were hoping this week away would provide some rest and respite.
the primary symptoms that parker's struggling with on a daily basis are severe joint pain, insomnia, brain 'loopiness' and intense fatigue. these have been intense enough to keep him on the couch or in bed most days. however, in the 3 weeks leading up to this holiday, he had been having a few 'up moments' on some days. he had even felt well enough to get out for a several bike rides and swims. we were hopeful that parker would have a few 'good days' while we were away so that we could all enjoy a few fun outings as a family.
the one foreseeable hurdle was the pretty pill protocol. (read blog post about that here) he was scheduled to start it the day before we left. the timing of this was a bummer - as often any new protocol targeting his multiple infections will cause an increase and intensity in his symptoms. (these flares are called "jarisch herxeimer reactions" aka "herxing".) a herx can last anywhere from a few hours to several weeks - many factors play a role in the intensity and duration of a herx.
the first 48 hours on the pretty pill protocol were rough for parker. 12 hours after beginning the pretty pill protocol, he was hit hard with herx. this coincided with our travel day up to Kelowna (about a 4 hour drive from our home). he was fine for the first 2 hours of the drive and then he was suddenly taken down by sharp and intense pain. he described the pain as like being stabbed with a knife and having glass rubbed into the cut. the pain was primarily in his face and head) while this may sound a bit bizarre, this is a very typical symptom experienced by lyme/bartonella patients) it really knocked him off his feet.the remainder of the drive, was spent with him hunched over, hands clutching his head and moaning in pain. he spent the majority of the first 2 days of our get away in bed with this pain. as brutal as he felt and as hard as it is to see him suffer, the severe and sudden increase in symptoms is actually a positive sign that these new meds are targeting the infections.
on the afternoon of our third day, he rallied and his pain became more manageable. he asked if we could go for a bike ride. riding brings parker great joy and feeds his spirit. we were happy to oblige! biking is something we enjoy doing as a family (ok, avery is not a huge fan of it but she takes one for the team.) it is rare for us to be able to do activities as a family so it is not something we ever take for granted.
the Hubster is especially keen on it. he has been running mountain biking clubs in east van high schools for 20 years. he has also spent many years yearning for the day that parker would be well enough to ride with him. when this finally happened during parker's remission last summer, parker took to biking like a fish to water. he quickly developed a passion for it and demonstrated a natural ability. much to the hubster's delight, parker rapidly became a very skilled and competent rider.
recently, parker received a new bike. lighter. faster. fitted to him. this was due in a large part to the generosity of a young man named steve, who is a mountain biking enthusiast himself. the Hubster has known steve for a long time - when steve was a teenager he was in one of the Hubster's riding clubs...steve still looks 12 but he's actually in his 30s). this makes us feel old.
parker has been anxious to get out and break in his new bike but just hadn't been well enough to ride since getting it. so when he declared he felt well enough to go out, we geared up and headed out right away. keeping in mind his physical challenges, we set course on a pretty placid, beginner trail. we weren't out for long before parker's lyme symptoms flared and he began to feel really sick. he got off his bike and lay down to rest for a bit. this did not help. he felt miserable and just wanted to get back to the condo. we immediately turned around and headed back.
several minutes later he wiped out.
we did not see the actual crash as he was ahead of us and had just rounded a corner when it occurred. avery and i were the first to come upon him. this was traumatic for avery. parker has no recall of the crash at all. he was bloody, dazed and confused. he could not tell us where he was, what month or day it was, what he'd eaten for dinnner the night before or what had happened.
the short term memory loss, disorientation and rapidly developing goose egg on the right side of his temple earned him an instant trip to the ER.
so much for a doctor and hospital free trip.
he is being treated for a concussion. he had to have complete rest and no brain stimulating activities (no electronics, reading, xbox, listening to music etc) for the following 24 to 48 hours. he has a black eye, swelling, abrasions and a cut on his right temple. he has a line of contusions, broken blood vessels and bruising running along the right side of his scalp - even though this part of his head was covered by his helmet. the right side of his body and head are most likely the areas that took direct impact and the brunt of the crash. the left side of his body is also bruised and covered in road rash so it is likely he rolled and slid on impact. his left hip and left shin are bruised and sore as well.
at the hospital the doctor was assessing him and asked him what number his pain was on a scale of 1 to 10. 1 means no pain. 10 means worst pain ever.
parker described his pain as a level 4. the doctor was taken back by this and questioned his response, "a four? really? did you understand the pain scale? the lower numbers mean low pain. a one means no pain!"
parker assured him he understood. (they have no idea how well acquainted he is with 'the pain scale'.
"woah, you are one tough guy!" the doctor exclaimed.
the nurses had to scrub and clean the dirt and debris out of all his wounds. he grimaced twice but did not flinch or wince. (i cringed the whole way through). the nurses could not believe how stoic he is nor how high his tolerance level is for pain. they kept telling him how amazed they were by him.
i kept thinking you don't know the half of it.
this kid is amazing. he is a warrior. no matter how painful his life is he just keeps fighting his way through it. he has learned to cope and function in spite of living with a level of pain most folks cannot fathom. he has been in ERs and hospitals countless times before in agonizing pain due to lyme. often describing this pain as an 8 or 9 out of 10. yet because his pain is 'invisible' and caused by a disease that is not considered real, his pain is dismissed as being faked and/or attention seeking behaviour. or perhaps, not near as bad as he says it is. we've been told that "some kids just have a very low tolerance for pain - often because they are more anxious than the average child." we've been sent home from ER visits loaded down with resources on how to parent your anxious child or referrals to psychiatrists/psychologists.
now take same exact kid and arrive in ER with him describing visually gnarly wounds as only a level 4 and suddenly he's hailed as uber tough and amazing.
the irony gives me a level 10 headache.
life is not fair. we know that. we don't expect it to be. we also know that the outcome of this crash could have a lot worse. we are very, very thankful he did not suffer more severe injuries. we pray that the trauma his body and head sustained will not further aggravate his lyme. the one upside to all of this is that he is finally sleeping at night (most likely because of his concussion). he has had pretty severe insomnia since january so we are all happy he is finally getting some sleep.
but let me be frank, THIS BITES. IT HURTS. BIG TIME. his crash is a blow both physically and emotionally. for the past 6 months, parker's "good days" have been so few and far between so to get taken down on a "good day" while doing something he loves but so rarely can do is like adding insult to injury. we are now 6 days post accident and he is healing. it is nice to see visible signs of progress each day but the crash pretty much wiped out his entire holiday. aside from a little family walk down by the Kelowna waterfront, that ill-fated bike ride was the only outing we had all together. regardless of whether or not he was having a 'good day' lyme symptom wise, he has been laid up on the couch with a bruised up body and concussed brain. but we know that he will overcome this setback too. no matter how many times he gets knocked down, he keeps getting up. he's a fighter. fall down seven times, stand up eight. his strength and resiliency and ability to keep smiling in the face of adversity are astounding.
those nurses got it right.
he is amazing.