the hubster and my girl left for mexico on wednesday (july 29).
the two of them, along with a team of 40 (youth, adults & a flamingo named Floyd) are driving to Ensenada to serve in a local orphanage. This is the hubster's third "Project Serve Mexico" trip and my girl's first trip! please keep them in your prayers - for the Hubster as he provides leadership for the team, for safety on the road (canada to mexico is a LONG drive), cohesion & bonding as a team and for energy and joy while serving in the orphanage! also if you could pray for those of us (spouses & family members) left behind that would be appreciated. they will be gone for 2 weeks so it's a long haul for everyone!
if you would like to follow their journey or are simply just curious about floyd the flamingo, you can find, like & follow them on social media sites listed below: Twitter: Search for PSMEX15 and follow us Instagram: Search for PSMEX15 and follow us Facebook: Like us on www.facebook.com/GVYFCYouthUnlimited Youth Unlimited Blog: Visit the website http://www.youthunlimited.com/blog/
so this is me after i got stung by a wasp yesterday...
i know. clearly a bit dramatic. but, in my defense, it was no regular, run-of-the-mill sting nor standard reaction. Oh NO, of course it was NOT NORMAL AT ALL because I am Queen Bee of peculiar and bizarre things happening to me. (and just so you know, as it turns out, taking selfies is a pretty effective distraction for pain.) i was out for a walk in our neighbourhood park and a wasp plowed into my face...actually, to be exact, it flew with pin point precision right up under my glasses and got stuck between the arm of my glasses and my temple. No lie. WHAT ARE THE CHANCES? clearly, it did not appreciate the shaded UV protection offered by my specs, as it immediately backed its butt into my temple and stung me. i reacted by screeching loudly, whipping off my glasses & frantically slapping myself upside the head. despite my ninja like moves, the stinging continued & this odd electric shock-like burning pain began rapidly spreading across my face. i had no idea if this was normal or the start of an anaphylactic reaction so i panicked. then i did the next logical thing - i made a bee-line for home...and i did not retreat quietly nor gracefully. nope. not at all. shrieking trilly, with my arms flailing and karate-chopping the air, i half-walked/half-jogged through the park as fast as my on rubbery, shaky legs could carry me. i left stunned, mouth-gaping park goers in my wake. i made a spectacular sight. in fact, i'm almost certain i darn near nailed the running style of Phoebe Buffay from Friends
by the time, i haphazardly stumbled into my house, my face was ON FIRE. the pain was radiating into my jaw and the entire left side of my face had this odd numb, swollen, burning sensation. i was sure my face & head must be astronomically puffing up. i texted the Hubster to come immediately; 'SOS- I got stung by a wasp. in bad pain.come quick.FYI- don't be alarmed but pretty sure my head is swollen the size of a watermelon.' then i took a deep breath and bravely checked my face in the mirror hanging in our entrance. there was one, teeny tiny, very minuscule red dot at the sight of the sting. NOTHING ELSE. no swelling. no angry redness. no splotchiness. no hives. not even one itty bitty bit of puffiness. i looked nothing like how i felt. ironic how bug bites have a way of doing that to me. despite my normal appearance, my face was burning something fierce, so i made a bee-line for an ice pack. the hubster appeared then. and i told him how that wasp so precisely flew directly into that spot between my head and glasses. and how it stung me and how bad my head was burning and how choked i was that i had NOTHING to show for my pain. "Like, what are the chances?!" I exclaimed. to which he dismissively replied, "Actually, that probably happens more often then you'd think." and i indignantly huffed, "NO WAY! This is NOT normal. This is rare - my experience is UNIQUE. Flukey things ONLY happen to ME. Do NOT take THAT away from me." and my girl, overhearing our conversation, gasps "AWH poor thing!" and right as i'm ready to bask in the light of her sympathy she continued, "She must have been so scared when she got stuck in your glasses. No wonder she stung you."
The Stinging Take-aways;
my girl values the emotional distress of a wasp more than my physical pain
i have a propensity for acquiring bug bites that give me pain that is invisible to the naked eye
taking selfies is an effective pain management technique
i could be a stunt-double for Lisa Kudrow
i have had very intense noise sensitivity and brain fog for the past week and a bit. interestingly, 6 hours post-sting, those symptoms suddenly lifted. i am now 24 hours post-sting and am still brain fog and noise sensitivity free. coincidence? maybe or maybe not.
i am currently researching bee venom therapy for lyme disease. i'll keep you posted.
my girl... with the aquamarine eyes and tender heart that brims with sweet sensitivity & compassion for all living creatures; great or small; furry, feathered or scaled; she loves them all.
CUDDLING A BABY JOEY NAMED VICTOR
(Kangaroo - 2 weeks out of the pouch)
Kangaroo Creek Farm - Winfield, BC
she is beauty and light and joy amidst suffering and heartache. she is equal in witty repertoire and insightful musings. last night she wrapped her arms around my neck, breathed in deep and murmured, "i could just hug you forever. i love you and dad so much. i mean, i have always even deeply liked you guys...but recently i've become aware of how much i deeply value you." and my heart beat wild and fierce in my chest. and i hugged her tight and wished with all my might that i could freeze time.
SHE LOVES ALL CREATURES. BE STILL MY BEATING HEART!
i marvel at the gift this one is. and i hope and pray that i can raise her to always deeply value and love herself and the one who created her.
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.
Dear Friends and Family, There's a few people out there who truly understand how Lyme has impacted our family. Christine Lindberg is one such person. A few months ago, I (Graham) shared with her how overwhelming the financial struggle is. A few weeks later, she informed us that she would launch a fundraiser to help us with Parker's ongoing and past medical expenses. It took me two months to actually give her permission to do this - my wife Shannon and I find it horribly scary to publicly acknowledge our need and ask for help. If you can make a donation - awesome and thank you from the bottom of our hearts! Make sure to SHARE Parker's story via this fundraiser on your FB wall and/or via email. Please be informed about Lyme Disease - we do not want Lyme to impact your family the way it has ours. (Canlyme.com or ILADS.org) Thank you very much to those who have already stepped forward to help Parker out-climb Lyme. We solidly believe that Parker's 9 month remission (May 2014 to January 2015) is a clear indication that he can beat Lyme! Last summer, after years of being wheelchair bound, we felt like we were witness to a miracle each time he conquered a new mountain top or ripped single track down trails all over the lower mainland. He is fighting hard to get back on top. By way of donating you are being the hands reaching out to pull him up and the feet to journey alongside of him as he sets out to out-climb lyme once and for all.
Please say NO to Lyme and Yes to Parker! Love, Graham Goertzen & family
Parker - Summer 2014
The Stawamus Chief, Second Peak, Squamish, BC
The following is a note from Christine Lindberg, the organizer behind this fundraising endeavour for our son, Parker aka Sparky. Dear Friends and Family of the Goertzen Family,
My name is Christine Lindberg and I am writing this as a concerned friend of this beloved family.
This week, I launched a fundraising site at youcaring called, "HELP PARKER GOERTZEN OUT-CLIMB LYME", in order to raise much needed funds for their son, Parker's medical treatments.
The Goertzen family is so grateful for the support of many over these long years of illness and suffering. I know that many of you have watched them endure this fight for so long and you have faithfully persevered in prayer for them. As their community you have ridden the emotional highs and lows of this journey with them; celebrated the victories along the way and cried out and pleaded for mercy on their behalf inthe deepest depths of their suffering. Quite possibley, you may be feeling discouraged, uncertain or even somewhat complacent about their battle against Lyme. I know many of us have often felt like helpless spectators on the sidelines, not knowing what else to do or how to help. Well, this fundraiser is a way to be there for them in a very tangible and crucial way! Our family is asking you to join us in donating money that will be used to help Parker fight his recent relapse in his very long battle with Lyme disease. Currently, it is taking $3,000 per month just to keep Parker from further decline - they need help to continue this plus explore other options that their medical team wants to implement in order to move Parker from 'survival mode" into a sustained recovery and healing. Is healing from Lyme disease even possible? The answer is YES!
Parker - Summer 2014
Train Wreck Trail, Whistler, BC
As a mom of a son who endured the agony of Lyme Disease for years on end - but who now has before me a thriving, healthy and healed son, I can say the answer is YES! A resounding YES! Our family went through this battle for years, I can assure you that we were able to "leave no stone unturned" in seeking medical treatment options for our son Riley because of the financial support of our community. I will forever be grateful for the people in our lives who supported our family in such a tangible and real way...even when there seemed to be no end in sight.
Parker - Summer 2014
Lynne Valley Peak, North Van, BC
Please stand with us and say NO to Lyme and YES to Parker. Though the climb has been long and arduous, the reality is there is so much hope. Parker out-climbed lyme before and we believe wholeheartedly that restoration and a sustained recovery and healing is fully within his reach. There is hope that Parker can out-climb lyme once and for all and be able to thrive and lead the life he is called to - with joy and abundance. The bottom line is that they need our help to leave no stone unturned. It has taken them a long time to agree to this fundraiser - as they are not the type to ask for help. They are incredible human beings who give so much to others - Let's shower them with love and financial support.
Please click HERE to follow the link to complete details of the
If you have any questions or can help spread the word, please do not hesitate to contact me, Christine at cklind47@gmail.com! On behalf of Graham, Shannon, Taylor, Parker, Avery and, of course, Harrison, I thank you in advance for your consideration and support! Christine Lindberg and family
parker started a new protocol this week. we're calling it the pretty pill protocol because, well, the pills are pretty. it is called Sporanox. There is always anxiety about starting or adding any new med into treatment because often symptoms get a lot worse before they get better. as purdy as these pills look, they look extra scary for a few reasons.
first, because he's never been on them before so we have no idea how his body will react. second, his doctor is using these pills as part of a protocol to target mycotoxin issues in his brain, sinuses and lungs. treating these can be tricky and we know the die-off (herxing) could be intense. i'm posting about this because i would love to get feedback from any other lyme or mold or biotoxin illness warriors out there that have 'been there, done that'. speaking of been there, done that - i am working on a post to update you all on Parker's LDI Immunotherapy . he began this treatment therapy about 11 weeks ago now. i posted about it here. i have had a few emails and inquiries from folks asking how things are progressing on this treatment. i am so sorry that i have been slow to respond to inquiries and in posting an update! i know there are many people in the Lyme community researching this treatment and anxiously waiting to hear if it is working for those that are undergoing it. here's the reason for the delay - parker had a very severe flare and got very ill within 24 hours of receiving his first dose of LDI. he was essentially bed ridden for the six weeks following his first dose. his medical team was baffled by his intense response as he was given the minutest dose. the tricky thing has been trying to figure out if the LDI Immunotherapy was just a contributing factororthe cause of his flare. i haven't wanted to post an update until i felt like we had a clearer understanding of where things sat with this therapy or even if his medical team would continue to utilize this treatment for him. at this point, his medical team believes the LDI contributed to the downward turn in his condition but (as per usual with lyme), there are about a million and one variables that may or may not have made things worse for him! we are still sifting thru all the 'rubble' but DR H did feel it was important and vital for him to continue with LDI Immunotherapy. so he received his second dose about 3 weeks ago. he did have a flare of symptoms again - but it was less intense and only lasted about a week. the past two weeks have been a bit better for him. we are hopeful this is a good sign that his body is having a favorable response to the LDI. albeit, now that he's feeling a bit better it makes starting the pretty pill protocol a whole lot less appealing - especially considering dem purdy pills could make him feel less than stellar. i promise i will be posting a more detailed and specific post of his journey with LDI in the coming weeks and months - just waiting til he's had a few weeks under his belt with this second dose in his system to render any judgements or opinions on this treatment protocol!
