April 26, 2016


i'm just another Alice who's trying to find her way out of her head
 and into a wonderland. 
                                  ~V. Nada
wonderland trail - fall 2015

as i mentioned in healing takes courage, i've been dealing with a flare up of panic attacks, uncontrollable vomiting and endless, pink tears recently. i'm not entirely sure what is all contributing to it but it had the markings of what a strep flare (pandas) looks like with me (sore throat, sudden onset panic attacks, intensifying anxiety and rapid weight loss) i'm pretty sure there are other factors at play as well but for the time being, i'm back on amoxicillin and awaiting a phone appt with DR H (lyme doc) later this week. as per usual, the amoxi brought me back to baseline anxiety & stopped the panic attacks within 12 hours of first dose.

that's the magic of moxi! lol 

when my anxiety is heightened, i feel caged and edgy. i have an inner trembling that i cannot shake and i can't sit still. since august (2015) biking has been my escape from that. so last week when i had a sudden and abrupt intensifying in my anxiety i pushed myself to go for a ride - even though i wasn't feeling all that well physically.

about 45 minutes into the ride - i had my first outburst of uncontrollable sobbing followed by a panic attack (this would be the first of what would be many in the days to come but the first time it's ever happened on a ride)

the fact that it happened during a bike ride fully did me in. 

Wonderland - Spring 2016
riding is the one place and the only time i am totally free from anxiety - my head is clear and i feel happy and free. and yet, there i  was on my knees on the side of a trail sobbing and shaking and feeling like i was losing my mind.

i was unable to escape this sense of overwhelming grief and alarming sense of doom, my thoughts spinning wildly, chest raggedly heaving, stomach painfully constricting, and an inner trembling so intense it knocks the wind out of me and causes my legs to give out beneath me. a panic attack is like toppling head first into a rabbit hole -
Rabbit Hole - the term comes from Alice in Wonderland where she fell down the Rabbit Hole into some bizarre stuff. It is commonly used as an expression or euphemism for a portal to a bizarre world with significantly strange happenings and extremely surreal situations.

its a chaotic whirlwind of surreal images and overpowering emotions and it tosses me mercilessly to and fro - the gale force winds of anxiety quickly sweep away my ability to discern truth from lies - during an anxiety or panic attack, i truly believe that this is me, this is how i always am and how i will always be - i am wholly convinced of that as fact not fiction. i don't lose touch with reality but i can't find my way out of the rabbit hole...and now that was happening on a ride!?!

are you freaking kidding me?

that overwhelmed me with a sense of desperation, sorrow and rage.

is there no part of me that can be untouched by the scourge of strep? is there no place left untainted by the sting of lyme? is there nothing sacred nor any place protected from where the loathsome tendrils of anxiety seeps in and chokes life into a limp, lifeless, tear-stained rag doll.

it eventually passed and i got my back on my bike and rode down the mountain. but i was left rattled. unsettled. grieved. and fearful that i had lost the one thing that literally keeps me sane.

could it happen again? 

biking is my happy place. the sense of wonder and joy and freedom i experience on my bike is something i cherish. 

could that have been taken from me now?

i've lost so much to these diseases - could i have now lost this thing that has been my beauty in the ashes?

Wonderland - Spring 2016
those questions and thoughts haunted me over the next few days...i knew i'd have to set about to answering them with another ride but i was too physically and emotionally drained. 

6 days passed.  

then sunday dawned and i looked at the hubster and said, 

"today we ride for tomorrow we may die."

ok. i didn't exactly say that...i'm almost but not quite that dramatic. lol.

we tossed around some ideas on where to ride. i had it in my mind and heart, that i wanted to head up to squamish and ride a trail called 'wonderland'. we had ridden up there once before (fall 2015) and i just remember that wonderland had filled me with wonder - with it's spectacularly vivid hues of green, eclectic mix of vegetation and towering, moss laden trees it had felt magical and majestic. plus the name of it in context with my life seemed rather fitting (and yes i am dramatic enough to think of that).

off we went.

the trail was everything i remembered it to be 
i was everything i am when i am on my bike. 

free. happy. hooting and hollering. alive. giddy.

i was ripping along and thinking, "oh, its just so pretty i should slow down and take it all in...maybe even stop and take some photos..." - but then i thought, 'nah.' - once i'm riding it's hard to stop. i just wanna go. and i wanna go fast.

mere moments after having those thoughts, i got some air going over a drop and my tire hit the end of a root that was poking through the loam. instant flat. i have tubeless tires so that takes skill! 

but the flat did not deflate my mood.  i took the moment to stop and smell the forest. hear the birds. to be still. i snapped some photos...and i even learned how to change a flat.

wonder of all wonders, i was able to be fully in the moment without movement or sound. 

sometimes, i listen to music when i ride (just one headphone in) because it helps me with balance and rhythm. ironically, when the flat occurred, i was listening to twenty one pilots song called 'ride'...

"i've been thinking too much. help me.
oh, oh, i'm falling, so i'm taking my time on my ride"

so i took my time on my ride down wonderland. then we booted up to alice lake and had a nice climb up a trail called '50 Shades of Green' and a fun shred down a run called 'Credit Line'...which was full of rocks, berms and root drops that made my heart sing (and no more flats - so no pictures from those trails!)

it was an incredible day soaking in the breathtakingly vibrant vegetation and rad trails...

best of all, it was all ride and NO cycling thoughts!

Wonderland is also a walking trail. so if you don't ride you can still enjoy it - i highly recommend checking it out!

it's tick season so be tick aware! wear repellents and do tick checks!

April 25, 2016


the boy's staples came out last week...

he was told he has to be careful so as not to disturb the healing process. he has to go easy so as not to put strain on his freshly healing incision. no heavy lifting but he has to be brave and gently stretch it even though it hurts. he must be patient with the process.

his broken skin and fragmented bones are healing. this is good.

so then why am i splitting apart at the seams?

last week was a haze of panic attacks and uncontrollable episodes of vomiting. the last few days have been better but i'm still bawling at the drop of a hat (and i need a hat to cover up my hair color drama)

what is going on?

is it one of the stealth pathogens that lie in my body - like thieves in the night waiting for a moment of unguarded weakness strike?

is it the years of watching my child(ren) fight their own battles with chronic lyme? and the invasive grief and holy hell fury i feel in the face of their suffering? when a momster can't make it better...well, that splits your heart wide and bleeds it dry.

is it the orange roots and hair balls i'm leaving in my crying, puking, trembling wake?

is it just life? this lyme life that we live...with one crisis after the next happening and no time to set straight the brokenness in between?

or am i so broken and damaged and so lacking in resilience that i'm just coming unglued? (that's what my anxiety screeches in my ear)

it's probably a combination of all of the above.

yup. the past 10 years...coupled with the last 7 months have been a wild ride. chaotic. sorrowful. painful. bewildering. they've taken a toll. they've cut deep and wounded my momster heart.

and yet, piece by piece the boy is healing.

his surgeon's advice is worth taking to heart for all of us.

take care. be gentle. go easy. be brave.

healing takes time, courage and patience...and it can even hurt - especially when the wound is fresh and runs deep.

but i can heal. we all can. never give up.

April 20, 2016


LDI/LDA IMMUNOTHERAPY is a fairly new treatment for lyme. i know there is a lot of buzz about it in the lyme commuity. some folks are finding it very helpful. others not so much. i have had several inquiries asking for an update on our experience with it. it's hard to believe that both sparky and i started this treatment almost exactly year ago today! 

(you can read my original post about LDI/LDA Immunotherapy by clicking this link)

it has taken a really long time for me to reach any sort of conclusion on whether or not it is helping us for several reasons:

first, for the longest time, i really felt like i had no definitive answers on whether it was helping, flaring, or doing nothing at all! 

second, it is a slow treatment process - the dosing occurs once every 7 weeks. even with using ART testing, it can take several rounds before you find the 'right' dose for your body... which means many months can go by before you even find a therapeutic dose! then it can take several more rounds at the therapeutic dose before you experience any sustainable/notable changes in symptoms. 

third, add in the usual unpredictability and complications that are par course for treating lyme and well, the results of LDI/LDA have literally been about as clear as mud for the longest time! 

fourth, there has been a lot of drama and trauma in this house in the past 7 months which has made writing difficult.

here's the basic crux of it: it's a mixed review.

it does not appear to have worked for sparky. he is no longer on it. but wait, we may re-start it down the road! 

it does appear to be working for me...although i have not used it to treat lyme (yet)... i really do believe that this therapy is helping my body heal - i think my experience with using it to treat my other issues (strep, mold, mycoplasma, chemical & food sensitivities) is relevant to the lyme/chronic illness community as many of the issues i have are co-morbid with lyme. i am working on writing an update about it.

i know most lyme patients are seeking info specifically for LDI in regards to lyme. so the remainder of this post will address my take on sparky's experience as he was specifically treated for lyme with it. 

for weeks i've been laboring over this update - ack. i'm so frustrated with it! i guess i've struggled with thinking what is the point of writing a detailed account when the simplified answer is "no, it didn't work".... on the other hand, i'm a detail oriented sort of girl and so i quite naturally digress to writing lengthy accounts. all things considered, even though it doesn't appear to have worked for sparky, i do think LDI is a worthy tool to consider in the fight against lyme. 

initially, LDI therapy was brought up in regards to using it to treat sparky after his relapse with lyme began in jan 2015 (read about his remission/relapse here)

parker has immunodeficiencies - primarily of iga, igm and igg. i also have immunodeficiencies so there could be a genetic correlation but there is speculation by his medical team that living with lyme has depleted his immunoglobulin levels. we did not know (still don't) know what caused his relapse in january 2015 but given all the immunological findings on him, we did feel like there an auto-immune component was a piece of the puzzle. 

therefore, trying LDI made good sense...yet, treating lyme is a tricky balancing act and knowing when to add additional therapies into your treatment plan often presents a conundrum. at the time the LDI was presented to us as a treatment option, sparky was 4 months into his relapse. he had only been back on abx and iv therapy to treat his relapse for 6 weeks. at that point, the abx treatment had stopped his downward spiral and he was just beginning to show signs of improvement.

we knew he was at a vulnerable place but the doctor that recommended he start on LDI has been part of his medical team since 2010. she knows his case and his body really well. we all agreed that LDI was the next right step even though we were concerned about provoking an inflammatory response while his body was already pretty reactionary. 

basically, the goal of LDI treatment is to find a dose that is big enough to signal the immune system to calm down but small enough to not cause a huge inflammatory reaction. finding the right dose can take a few cycles... it is not unusual to have big flares when first starting. once the appropriate dose is found, there can still be flares in symptoms for the 7 days following each dose. as treatment continues, the patient should begin to experience a gradual lessening of symptoms and flares between each 7 week cycle of treatment. 

sparky's doctor wanted to avoid a big flare since he was still in a weakened state from his relapse, so he was prescribed a very micro dose.  additionally, his doctor felt that an underlying issue with strep could be contributing to his never ending joint pain. since LDI for strep does not historically cause huge flares, he was started on the LDI for Strep first. 

he had his first strep LDI dose in april 2015

he had no discernible response - good or bad - in any of his symptoms.

he was given the LDI dose for lyme the following week. 

unfortunately, even the baby dose caused a huge flare. 
(you can read details about that at The Pretty Pill Protocol)

this sucked and caused us concern but it was not entirely unexpected. altho' the duration of his flare - 6 weeks - caught everyone off guard. but there were so many variables impacting his health, that it was really difficult to know whether the LDI was the full cause of the flare or just a contributing factor. his medical team felt that it was important to keep him on it.

so we decided to stick it out and give it another try with an even smaller dose. 

7 weeks later, he was given his next dose. 
he did not have as big a flare and seemed to do a bit better for a few weeks following that one.

after his third dose, he had a flare and his body never seemed to right itself after that. his symptoms continued to be all over the map all the time and there was a slow but steady decline. 

all in all, he had 3 doses of LDI for lyme and strep. which is 21 weeks in total. 

his fourth dose was due during the first week that he was going to be in treatment in kansas. we debated whether or not to bring it and continue it or not. LDI is in pre-loaded syringes and it needs to be kept cold.  bringing it with us meant we'd have to travel with a loaded syringe on ice. with 2 days of INTERNATIONAL travel -border crossing, a 5 hour drive plus 2 flights - ahead of us we knew it could potentially complicate our travelling. trust me, crazy stuff happens when we travel! if you've been a blog reader for a while then you will know that we NEVER FLY UNDER THE RADAR (remember Sandeep and The Security Breach?) our trip to kansas was NO different. even without the syringe on board, there was airport drama this time around! 

while waiting for our connecting flight to witchita from chicago, imagine my surprise when i looked down at my boarding pass and discovered i was flying as a man! OKAY...AND NO ONE QUESTIONED THAT? there's a hit to the ego.

but wait that was no biggie compared to what happened on our return flight. that story is worthy of it's own post - it's one of those 'only that would happen to shannon' ones.

back to the reasons for leaving the LDI behind - when we made the trip to kansas we felt like we were embarking on a whole new methodology of treating sparky. we wanted to fully embrace the new. given that we had not really seen any benefit from the LDI and he was steadily declining, we opted to let it go.

i guess the rest is history as they say...

we went to kansas and that didn't work out so well. (read about that at hope is what we crave.) we're still piecing the puzzle that is sparky together - and working towards next treatment steps. we have several upcoming doctor's appointments and that fourth dose of LDI is still sitting in our fridge. i don't think he is in any condition to re-start it right now but i'm not opposed to re-assessing it for him further down the road.

if you made it all the way to the bottom of this dry drivel, thank you for reading! i don't know that it this review will be of much benefit but i hope some one finds it helpful!   

PS i am about half-way thru writing about my own experience with LDI/LDA. it's a more positive one.

April 16, 2016


"chronic sorrow is the presence of recurring intense feelings of grief in the lives of parents or caregivers with children who have chronic health conditions. at it's core, chronic sorrow is a normal grief response that is associated with an ongoing living loss. it is the emotion-filled chasm between "what is" versus the parent's view of "what should have been" 
                                                                                          ~susan roos

purged some pent up grief today...

sometimes out of nowhere you are struck by a torrential down pour of overwhelming emotion...some days i have a profound sense of grief for all that has been lost during the past 10 years of chronic illness. there's been a lot of loss. there may be many more years of it to come. adding to that, sparky's recent accident and subsequent hospital visits triggered many painful and distressing memories.

sometimes life just feels overwhelmingly sad and tiring.

grief. fear. sadness. living loss. they are emotions you feel with your whole body, mind and spirit. they are heavy and they suck and it hurts to walk thru them.

healing is hard. it's a steady uphill slog. it's hard, exhausting and ugly. plus i'm dealing with a minor major hair color disaster at the moment so totally NOT feeling so cute right now either. (just keeping it real). part of me is like, "ok, shan, whatever it's ONLY hair" but on the other hand, it is really NOT nice. it's orange and yellow and that's NOT okay.  

some days nothing feels okay and everything feels sad and ugly.

and it all suddenly overpowered me as i was riding up a mountain bike trail on mt. seymour. all i could do was sink into a crumpled heap on the side of the trail, helmet askew over my fried hair, doing the big, loud UGLY CRY.

the grief, the pain, the sadness just bubbled to the surface and tears flowed unchecked down my cheeks splashing on my glasses before slowly rolling off and free-falling to the earth.

as the last few fell, the settled and remained on my glasses. through my blurred vision their pretty purple-pink hue caught my eye.

i saw my pain on my glasses...but the pain on my glasses was reflected in a beautiful light.

PS sorry the snotty kleenex made the shot! but a good cry is very cleansing - especially of the nasal passages! also, i have no idea how or why my tears were pink. probably from too many chemicals on my head 

April 14, 2016


one week post surgery and the boy went to school today.

i spoke with the surgeon's office this morning and when i told them he was recovering well and had even gone to school today. they exclaimed, "that's amazing!"

i thought to myself, "yup. you're darn right it is."

actually, they really have no idea how mind-blowingly amazing it is.

"let me tell you something you already know... the world ain't all sunshine and rainbows. it's a very mean and nasty place and i don't care how tough you are, it will beat you to your knees...and keep you there permanently if you let it. you, me, or nobody is gonna hit as hard as life but it ain't about how hard you hit. it's about how hard you can get hit and keep moving forward. it's about how much you can take and keep moving forward. that's how winning is done." 
                                                                           ~rocky balboa

just a short 6 weeks ago we were at quite possibly one of the lowest points we have ever been. sparky's situation was grim and we felt pretty hopeless.

the 6 months following our trip to kansas were beyond hard. they were horrible and heartbreaking. they were horribly heartbreaking. 

we are working through all of it ... we have deep wounds that are in need of healing. we still feel bewildered, confused and confounded by all that has transpired. we are still trying to piece together the puzzle that is parker...especially in regard to his relapse (that started in january 2015) and then the monumental spiral downward that transpired after our trip in october (2015) to the treatment center in kansas. the prevailing and confounding questions of course has been what the hek happened?! what triggered the initial relapse in january 2015 and then what triggered or contributed to the rapid and accelerated decline in october.

lyme and babesia are still an issue - that is a known and well-established fact but we figured there must be another underlying factor. that there was some missing piece to the puzzle has always been of concern to DR H. the hope was that this would be uncovered at the center in kansas.

since november (2015) we have been working with DR H to put the pieces together...there has been a lot of brainstorming, testing, and treatments. 

there were multiple issues to investigate. the boy is a mystery. 

at the tail end of february (2016), we were able to identify a clear link between his joint pain and localized inflammation. this was a huge revelation as we had been trying to treat it from a brain involvement standpoint - the theory being that his brain may be caught in a neurological loop/misfiring pain signals as opposed to there being actual inflammation in his joints. once we identified this link it helped to narrow down the field as to underlying causes. 

heavy metal toxicity came to light as a strong possibility. DR H started parker on a heavy metal detox in march. he had never been treated for this. testing did reveal that he had high levels of several metals (cadmium, mercury, lead). once we began treating the localized inflammation and then added in a heavy metal detox things rapidly changed for the better.

we are not in the home stretch by any means. so far what we are doing is working and he is feeling tons better but we haven't found some miracle cure either. i've been on what he is on and it's not helped me. i know others that have too. it seems to be the right thing for his body right now but whether or not it is healing him or just managing his symptoms is unknown. DR H is concerned that it is the latter. we are still trying to assemble all the factors at play. there is still testing and further investigation that needs to be done. as well as doctors appointments to schedule. of course, this has all been delayed since he went head first over the handle bars of his bike last week. (called a "superman" in mountain biking lingo)

now he's literally being held together with 19 staples, 6 screws and a titanium plate.

so the boy is chock full of metals.

how ironic.

he is tough as nails. he's resilient. strong. brave. enduring. stoic. funny as hek. and my word is he a fighter. the first 2 days after surgery were rough. he barely moved or spoke. it was tough. but what he's lived through in the past 7 years pales in comparison. he says the pain from lyme is worse than this. can you even imagine?

i am amazed by his spirit...and that he is pulling through this so remarkably well. 

is it the calm before hell breaks loose again? gosh, i hope not. of course there is concern that this trauma to his body could push things into a tailspin again. we have been in touch with DR H's office several times since the accident and he has been started on additional antibiotics to treat any flare of lyme the accident could cause. 

is there fear that one wrong move could split wide open what has been stitched together? absolutely. but we are picking up the pieces and tying to keep focused on moving forward. one. day. at. a. time. we are grateful to be where we are. we hope that this forward progression continues. our boy has been through enough. 

ps don't give up

April 13, 2016


"when i ride, all the chaos and noise in my head disappears and a calm settles upon me and i find total peace. on my bike i am liberated from the pathogens that wreak havoc on my body and my mind. my bike keeps me grounded yet makes me fly." ~s.

i ride because mountain biking is helping to heal me - mind, body, soul. that is the condensed version...however, the reasons behind riding are multi-faceted. i began writing this 'why i ride' piece several weeks ago. in the course of hammering out my thoughts on riding it morphed into 4 separate pieces on mountain biking. (all of which i'll be posting at some point.)

turns out there are many reasons that i ride. what led me to downhill/enduro riding is the anxiety disorder i have because of the post-strep auto-immune illness i developed in spring of 2014. (read about it here - this is my brave)

here's the thing... the strep thing and resulting mental health issues it caused - broke me mind, body, soul. it shattered my faith. it is something i am still grappling to come to terms with. there is something about being tossed over the edge sanity and plummeting into a rabbit hole of inescapable terror that unmercifully rips you apart and strips you to the core of your naked humanity. 

being blind-sided by intrusive thoughts that come out of thin air and are then accompanied by compulsions to follow through on is a terror i still can't quite find the words to explain. 

Riding is a flight from sadness...it also clears the head as does the hubster's photog skillz

anxiety is a mind trip and it tears down the core of who you are and what you believe yourself to be. at least it did for me. it made me feel weak. useless. unworthy. cowardly. ashamed. i blamed myself for it. i thought i sucked for not being able to suck it up. and i was pretty sure everyone around me thought so too. 

while i am a true, solidly INFJ introvert who needs copious amounts of alone time, being social is something i have always enjoyed. i like people. i like parties. i give speeches. i bare my soul on the internet. so to suddenly live in fear of social interactions has been confounding. painful. isolating. destructive. demoralizing. social anxiety makes you ruminate over every conversation until the words of it - of what you should have said and the dumb things you did say - swirl though your head as a mind-bending tornado of cascading self-doubt and self-hate. 

living with all-consuming fears and a sense of impending doom that i could identify as irrational but still become completely consumed by (despite using all sorts of psychological tools to combat it and prayerfully & fervently pleading for deliverance from it) left me feeling fatally flawed and spiritually defective. 

so that is bit of an insight into my brain on strep... 

i've worked hard in therapy to heal from that and to overcome the residual anxiety that lingers... and the resulting emotional fall out that comes from having your brain, body and life hijacked by multiple chronic, invisible illnesses. i've put in hours and hours and hours of extensive brain re-wiring, trauma work and many other methodologies of healing body, mind and soul - (there are several fundamental processes - as related to lyme -  that i have struggled to integrate as well...but more details about that another day) and they have all been valuable tools in my recovery but no matter how hard i've worked at it, i've struggled with putting the pieces of myself back together and finding peace...until i started biking.

i started single-track trail riding just shortly after my strep diagnosis in spring 2014. when the hubster (who as been riding for his entire life) suggested we try downhill at silver star bike park in vernon, bc this past summer (2015), i was not so sure about that. i googled it. ack. it looked pretty extreme and scary to me...and about the last thing i wanted to do was expose myself to any sort of fear stimulus. after all, i was recovering from another bout of strep throat that had caused a relapse of intense neuro-psych symptoms. i had already been on antibiotic treatment for a few weeks by that time which had brought the worst of the symptoms down to a dull roar but i was still contending with a higher than normal level of anxiety and intrusive, cycling thoughts. i really enjoyed single-track and knew it helped alleviate some of the chaos in my brain but downhill was a whole other world of biking. somehow the thought of barreling down a mountain on 2 wheels didn't seem exactly like a calming activity but i sure as hek did NOT want to get left behind. i knew that would mean spending the day alone with my endless, cycling thoughts. nope. nada. not going to happen. 

i figured being left on my own was scarier than anything any mountain could throw at me.

Up, up and away...on the chair lift at silver star

here's the bottom line:

when your brain is on fire seeking relief over-rides everything...even the physical limitations that lyme holds over my body and the fear of fear itself can motivate you to try something you never in a million years would have tried before ...and maybe that is the silver lining in all of this. after all, fear is what brought me to silver star mountain that day. and that day was a revolutionary, life-changing day for me and it also birthed in me an absolute passion for riding.

you would think that barreling down a mountain as fast as i can go, riding over logs, dropping off of rocks, sling-shooting out of berms and getting airborne would contribute to anxiety but for me it does the opposite. 

riding is my ativan. it is the ONLY thing that relieves my anxiety.

on that first downhill adventure i rode for 6 hours. i took jumps. i did drops. i rode blue. i rode black. i rode as fast as i could go. i hung on for dear life. i had unintentional dismounts. i even face planted. let's be honest - i looked ridiculous...but what i lacked in technique and skill, i made up for with loud enthusiasm.

My first downhill adventure. lol.
i was not trying to look like a flying bandit - the bandana was to help keep the dust out of my face

i whooped. i hollered. i laughed with unbridled joy after every.single.run. just recalling it makes me giddy. my unadulterated enthusiasm totally embarrassed the hubster and sparky but i didn't care... because i had no fear. no anxiety. no cycling thoughts. all the noise in my head just ceased to be. i was free and that was intoxicating.

i was fully present and fully free for the first time in a very long time. i felt strong. wild. free. brave. fierce. capable. independent. happy. bad-ass. i felt all the things i thought i no longer was. and that changed me.

i ride because riding brought me back to me.  

April 3, 2016


so this happened on saturday.

parker had a bit of a crash while mountain biking. his clavicle (collar bone) is broken and displaced. it is also seperated at the shoulder. he will be having surgery (most likely) on monday.

my last update about our sparky boy (read hope is what we crave) was about how he was and had been very ill for the past 6 months. shortly after i posted that he had a change in treatment which resulted in a total 180 in his health. over the past 4 weeks he has experienced a rapid and radical improvement in all his symptoms... he had now been re-building strength, shooting hoops, riding his bike and had even been able to go to school several times. it felt like a miracle. we just hadn't yet talked about it with anyone outside of family because it was all so new and still felt tenuous. he was/has been improving BUT he was (is) still living with daily symptoms and day to day flares. and we (along with DR H) were still concerned that things could just as suddenly decline and he could head downhill again. we felt a little, okay actually a lot scared that the rug could be pulled out from under him at any moment.

turns out the rug is his bike.

the crash occurred in a bike park on the sunshine coast. the medics at the park were fantastic and super compassionate. he had to endure coming down the mountain - they could have put him on a stretcher - but he chose to walk down (with help) and then a long wait in local ER. he then had to endure a 90 min ferry ride and 45 min drive to hospital where we live. he was given a shot of toradol after the accident but until we arrived at our city hospital the day after the accident, he'd just been on tylenol and advil to manage the pain. needless to say,  the last 24 hours have been intense & traumatic. but parker is tough as nails and extremely stoic. we are amazed by his strength and resiliency...and his humor. however, this is a really tough break on every front. appreciate if you could keep him in your thoughts and prayers.

Waiting for ferry.
He says the joint pain he experiences due to lyme is worse than the pain from his break.

i will be updating as i can.