WONDERLAND

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 
and
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!

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

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

HEALING TAKES COURAGE

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.

WHY I RIDE

"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.  

HOW IV CAME TO BE

it started this past september (2012) 
a return of anxiety and panic attacks
and
insomnia.
they had all been gone for a long time.
i tried not to panic (ha ha) that they were returning

i tried to look at it very logically.
i did not immediately assign their return as a sign of lyme. or babesia. or bart. no one on my medical team jumped to that conclusion either.

actually i was pretty convinced (and desperately hopeful) that the underlying issue was not infectious but rather Post Traumatic Stress Disorder (PTSD) related.
this made sense. a LOT of sense that these symptoms could have a psychological base. we have had major trauma and a lot of traumatic events have occurred at the start of fall over the last few years... the boys got ill in fall 2009, sparky started iv treatment in fall 2010, sparky underwent a second picc line surgery in fall 2011 whilst i was bed bound with fluid on the brain and on and on..

as we rolled into this fall and sparky began to deteriorate and his eye stuff started, i could feel myself psychologically "bracing" for all hell to break loose. i could physically feel it. my body showed it. i subconsciously held my body in that way - jaw clenched, shoulders raised and hunched, hands squeezed into tight fists. i was braced, standing guard, totally trapped in "fight or flight" mode.

so off to our therapist i went. we have been seeing this counsellor since jan 2011. she is trained in a specific trauma therapy is called Observed Experiential Integration/One Eye Integration (OEI). i do not think but rather i KNOW i would not be in tact had we not found this treasure of a therapist and this powerful therapy. 

OEI has been an incredibly powerful therapy and has aided exponentially in healing the trauma we've experienced on this crazy journey. in a nutshell, our brain remembers stuff and those memories can trigger physical symptoms. trauma forces our brain to process events in an unnatural order and as a result, our brain can get stuck in a neurological looping pattern of 'fight or flight. the problem is only compounded when multiple traumas occur back to back. OEI aids the brain in re-processing the events and breaking the unnatural pattern of neurological looping. in a sense, it helps re-wire the parts of the brain that were set into a frenzied state due to traumatic events. i will be blogging more specifics about OEI therapy in a future post. for the time being, you can find out a bit more about OEI by reading about it here, and read about the OEI theory and case histories here.

i worked hard during my weekly 90 minute sessions. there was so much growth and healing accomplished...i came out of them stronger, more centered and peaceful, feeling lighter and no longer felt like my brain was caught in "flight, fight or freeze" mode. even my posture changed. however, the anxiety/panic attacks continued. like clock work, every 4 weeks, they intensified in duration and frequency. this 4 week cycling of symptoms can be an indicator that lyme is lurking in the shadows. still, i kept doing the psychological work and fighting for my freedom...ever hopeful the anxiety issues were psychologically triggered as opposed to infectious related.

by this point, it was november. we flew down to SF to see DR H at end of november. he felt it was difficult to ascertain whether or not these symptoms were infection driven or not. after all, a 4 week cycling could originate from hormonal imbalances as well. he ordered lab work to have hormone panels done but felt it advisable to start me on one oral abx as i had been off all abx for about 9 months. he rx'd an abx called plaquenil. it treats both babesia and lyme. DR H suspected that if the anxiety/panic was due to infectious cause than babesia would most likely be the culprit.

i started the plaquenil and within 3 days had an intensifying of my symptoms. this lasted for the next 2 weeks...and then they were GONE. POOF. just like that. 100% gone.

it meant one thing.
they had been infection driven.

several weeks later, just after christmas, i came down with a nasty gum infection.
my dentist put me on the abx clindamyacin.
the dose i was prescribed just happens to be very powerful against babesia.
i started the clindamyacin and within 3 days all hell broke loose.

pain. pain. pain.
and
depression. dark, deep depression hit.
i finished off the short 10 day course of treatment. thankfully, my gum infection cleared up. unfortunately, that short course provoked a major herx and set in motion a cascading return of neurological symptoms.

as the weeks rolled on into late january, i went to a very dark and scary place. suicidal ideation returned along with a trickling return of neurological stuff. primarily...pins and needles and electric-like shocks in extremities, other very odd sensations, facial pain, nerve pain and my insomnia got worse and even sleeping pills were not always able to knock me out.

my brain began short circuiting again - i have lapses where i become disoriented and forget how to get to familiar places and number dyslexia. nothing severe but definitely noticeable. when i was at my sickest, i would have memory lapses that caused me to forget what my name was or how to sign my name, or what my kid's names were or their ages, or where i was, or how to open the car door...it is a scary thing...i would go for a walk in our neighborhood and not be able to find my way home (we've lived in the same house for 14 years). so the return of these recent brief, less severe lapses is disconcerting. i remember how terrifying it is to not remember. 

so, long story short
the clindamyacin awoke the sleeping babesia monster
and
i just haven't been the same since.
this how we arrive at the present 
and
the return of IV abx treatment.


oh, yeah, and one other major issue has prompted the need for IV abx treatment.

my barfing...it started march 14, 2012 and it is still ongoing a full year later...the daily churning of my gut has taken many twists and turns over this past year...enough so that i will have to reserve the right to spew that story in an upcoming post.

in light of babs rearing its ugly head and the return of some neurological issues, my docs do think that active lyme, babs or bart may be ONE of the underlying causes of the barfing. whether it is from infection within the gut or mediated from the brain is unknown. DR H suspects the barfing could be partly mediated by an infection in my frontal cortex and/or vagus nerve. hence, the indication to hit me with a course of IV as this is able to penetrate the blood/brain barrier. 

but, wait, DR H is still not convinced that infection is the sole underlying cause of the barfing. there are a few other issues that are under investigation that could be contributing factors. the 2 primary suspects are a mild estrogen dominance imbalance and, of all things obscure, an abdominal migraine disorder. confused, yet?

one thing is for sure, nothing about this is simple. straightforward. nor uncomplicated. my insides are one big, scrambled mish mash of complexity.  

more to come...but for now, i hope i've helped you see how IV came to be.