ACTUALLY, I CAN...

i am excited to share this post today! i wrote this piece several weeks ago. i had seen on IG that liv cycling was holding a contest called "actually, i can". they were asking for women to share their story (& a pic) on what those words mean to them, how riding helps you train your mind and face fears. the contest began on april 8, 2016 and runs until september 30th, 2016. a weekly winner is selected every friday until september. if you win on a friday, you are then eligible for the grand finale prize draw which is a liv bike of your choice!

"oh liv, you light up my life!"

well, that sounded right up my alley! plus, i ride a liv bike so i'm partial to the brand too! but i was a bit hesitant and scared to go for it. self doubt and anxiety kicked in whenever i sat down to write my 'actually, i can' story. i told the hubster about it and he encouraged me to go for it. not too long after that, taylor and mara dropped by for a visit and i was telling them about it too. taylor said,  "do it, mom! do it right now! otherwise you won't." 

so you know what? i did. i wrote it that evening with all the kids encouraging and supporting me. at one point, i got very overwhelmed and so anxious that i wanted to give up...or at least put it off for another day. plus, i felt so bad that taylor & mara were over and i was sequestered in another room writing...so much for family bonding! i told them, "i can't do this. look at me all up in my head trying to write while you are here to hang out and i'm not even visiting with you!" 

but they just laughed and kept encouraging me and yelling, "you can do it!"

i finally finished writing. then mara designed the graphics on my photo. then we submitted it just in time for the first friday of the contest. i had a lot of anxiety and 'not good enoughs' running through my head... but i was also excited and hopeful i had a shot at winning. 

friday dawned and i nervously checked the liv cycling IG account...

i didn't win.

i felt so deflated...whooosh....just like someone let all the air out of my tires.

neither did i win the next week.

or the one after that or the one after that.

:(

then today my picture and story were posted on the liv cycling IG with this message attached;

"One of the very first submissions for the Actually, I Can contest came to us from ticks and trust. Ever since, we haven't been able to get this amazing story out of our heads. At Liv, we are believers that a bike is more than just a bike and it is stories like these that prove bikes can train your mind and make you realize...Heck, yeah, I can! Congrats  to {ticks and trust}, our week 5 winner!"

i promptly burst into tears and then did a happy dance! 

i am truly honored and delighted to be chosen! riding has/is helping me re-define how i see myself and that i am more than the sum total of my illnesses and struggles. life is hard - each and every one of us carry with us pain and suffering. my hope is that sharing my story will inspire other women to believe that they are MORE THAN the fears they face and the challenges they live with.

the following is the piece that i submitted (albeit, there are a few extra wordy details here that had to be cut out in order for it to post on IG):

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

this past summer (2015), i tried down-hill mountain biking for the first time.

and i LOVED it.

like totally and completely LOVE LOVE LOVED IT.

all it took was that first ride down a mountain bike park to put biking in my blood. it was one of the most liberating, revolutionary, empowering, life-changing moments i have experienced.

i am obsessed with it now.

like i can't get enough of it obsessed.

it was during that first rip down that mountain at silver star bike park that i realized actually, i can get my life back.

i lost almost the entirety of my 30s to a chronic debilitating illness called neurological lyme disease. i spent half of that decade of my life hooked up to daily IVs and struggling to get out of bed. 

in the darkest hours of the past 10 years, i feared i had lost the 'best years' of my life. even if i got some semblance of health back, what kind of life awaited me? most of the time i was terrified and in pain and now i was over 40.

and isn't it all downhill after 40?

oh yeah baby it is!

on my bike, i am liberated from the pathogens that wreak havoc on my body and my mind. when i ride, i feel strong, brave and wild. my bike keeps me grounded and makes my fly. i'm not better {yet} but mountain biking has given me a belief in my recovery, trust in my body and is restoring my mind.

and it makes me feel like a fearless bad-ass to boot.

when i rip down a mountain i know to my inner most being that i am strong. i am brave. and actually, i can get my life back. one ride at a time. 

thank you to liv cycling for the amazing work you do to encourage and empower women! 



**got my fingers crossed that i win the bike in september!**

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.  

DIY RIPS, WOUNDS & A ROSIE PERSPECTIVE

i am always thinking. well, duh. maybe what i should say is that i am always writing in my head. yes. however, more often than not it takes a very long time for what it is written in my head to find its way cohesively to a published post. i follow a number of writers on IG and i am blown away by their ability to share their thoughts in written form on a daily basis. wow. just wow. at times i feel small and inept and frustrated by my sluggishness.

"too often we are ruled by everything that is wrong with us 

as opposed to 

everything that is right with us" 

                                          ~nick ortner

this morning i sat down to work on my post about the LDI/LDA immunotherapy. i've been writing this dang thing now for a couple of weeks. it's coming along but i'm frustrated by the length of time it is taking me to write it. i thought i'd get it done today. that was my goal but i only had an hour to hammer away at it before my plans for the day - a lovely stroll with a friend in steveston - took me away from the laptop.

as i was driving to steveston - i was quite suddenly overwhelmed with emotion. first off, the gas light was on. this stressed me out exponentially. gas stations freak me out. social anxiety perk - plus i can never figure out how to work the stupid pump - and i almost always end up having an attendant yell at me over the station loudspeaker. plus i was running late - so i really didn't have time to stop for gas. (oh good one - that like makes so much sense.) 

anyhow, while all of that was going on in my head, out of the blue i was bowled over by an intense sense of gratitude to be alive - lyme, anxiety and all. there i was driving by myself to meet a friend and go for a walk on a beautiful day. well, none of that is anything i take for granted. to be able. well, the intensity of those feelings just got me all bleary eyed (which was excellent because it  made the gas light blurry and a bit less noticeable.)

and then as i was driving along, this post just wrote itself. and since getting home (and i filled up the gas tank like a boss on the way home) my thoughts have made their way from my head to the screen.

diy rips, wounds and a rosie perspective

the gorgeous weather has me pulling out my thrifted faves from last spring.

the hubster says my thrifted shoes remind him of band-aids. smh. fashion mimics life. i burned my hand boiling water and sliced my finger tip whilst chopping onions this week. i really should not be allowed in a kitchen. given the balmy spring weather upon us and my recent mishaps in the kitchen it seemed fitting that i should wear my band-aid shoes today. after all, i like coordinating my outfits. the minor wear and tear on my ankle is left-overs i got earlier this week from a rip down a mountain biking trail called Dale's Trail on Mt Seymour. yes, i am able to mountain bike. it's incredible to be able to ride. it also helps me cope with my anxiety. my bike is my ativan. 

to be able...i am sitting here in my thrifted denim with my DIY rips, wounds and band-aids and just feeling overwhelmingly grateful to be able-bodied today. i have lived with chronic lyme disease for 10 years now. and spent many of those years bedridden and on daily IV treatment. my last big flare of lyme symptoms was a year ago and it put me flat on my back from january to march of last year. from where i sit today to where i was - even a year ago, 5 years ago, 10 years ago - is truly staggering. so today it feels incredible to be covered in band-aids from the wear and tear of life - all the way from the mundane things like cooking (albeit, let's keep it real, i am able but not really able to cook) to the extraordinary feat of shredding a black diamond run on my mountain bike. 

i have good days. and i still have bad days. but most days, i am able. more than able. for that i am wholeheartedly grateful. never give up. there is always hope.

rosie hued specs - zenni optical. 
rosie outlook - chronic life lessons

THE HAT STORY

hats. specs. thrift. these are a few of my favorite things! (bikes too, but that's a whole other story and crows! and coffee!)

if you've been a blog reader for awhile now, you probably know of my love for finding bargains at retail stores - my long standing faves being ross dress-for-less and target. even though most of my blog is about our family's journey with lyme, i've  been known to write about some of my ross shopping adventures. (read about my travelling pants adventure here). despite my honed bargain shopping skills even these stores now exceed our tight budget... so for the past 2 years, i have tried to exclusively shop at thrift stores. no more ross or target for me! (mind blowing, i know!) 

there are a few retail exceptions though... Zenni Optical for my specs, Forever 21 & Ardene for funky jewelry...and then there is this hat i recently bought from the hudson bay company. however, it was sort of a thrifty purchase as i did use a gift certificate to help purchase it. i found the gift certificate in a dresser i inherited from my nana (grandma) many years ago!

my nana's dresser

 the gift certificate was from 1995... which, in my daughter's opinion, makes it so old it's practically vintage. lol. indeed, it was so old that i was actually worried about trying to purchase the hat with it. in fact, it took me nearly two weeks from the time i saw the hat in the store until i went back and purchased it. 

i currently live with a social anxiety disorder that has been triggered by a post-strep autoimmune illness. (read "this is my brave" here), so going into a store and making a purchase can produce anxiety for me. add to that, a vintage gift certificate that may or may not still be valid and i was worried i'd get arrested or questioned - like they'd somehow think i was printing fake vintage gift certificates! i know it's so irrational but these are the types of thoughts that were running through my mind.

yet, the hat was calling my name! i was imagining all the looks i could create with it and the bonus of not having to spend time and energy on styling my hair, well, the allure of that finally trumped my quirky anxiety. 

off i went to the bay. before going though, i took the time to do my hair and create a look that i hoped made me look trustworthy and un-scammer like. when i finally showed up at the cash register, i nervously presented my gift certificate and breathlessly murmured, "i have this gift certificate. i have noooooo (insert high pitched squeak) idea if its still valid."

the sales lady took it from my shaking hand. she lifted it to the light and inspected it. then she asked the clerk next to her if she'd ever seen anything like it.

i tried my best to look nonchalant and legit. 

then the other clerk said, "oh i've never seen anything like that. you need to call management and have them come take a look."

i nearly vomited.

5 heart stopping minutes passed before the manager appeared. i could feel my heart pounding in my throat as i saw her approach. the first sales clerk waved the certificate under her nose. 

"what do you make of this? have you ever seen one of these?"


the manager grabbed the certificate and turned it over and over and over in her hands. then she held it up to the light.

i suddenly felt woozy. fearing i may topple over, i grabbed at the counter to steady myself. in doing so, i dropped my purse which clattered noisily to the floor. the manager's eyeballs left the certificate and gave me and the purse at my feet an appraising once over. then she returned her gaze to my face with one eyebrow raised.  i stopped breathing. i knew with absolute certainty she was sizing me up as a counterfeiter.

then she exclaimed, "oh wow! i haven't see one of these in 20 YEARS!"

it took me a full minute to start breathing again. 

then she called over another manager. and they began excitedly exclaiming over my gift certificate and they wanted to hear where on earth i'd found it! so i started to tell them my story. before i knew it, there was a total of 4 sales clerks and two elderly customers milling around and listening to my story. then suddenly everyone was reminiscing about the good old glory days of the hudson bay company.

oh my word. it was a total hoot but by the end of it all, i was more than happy to pull that hat on low over my brows and flee the store. no more retail for me. 

there's a bit more i'd like to add to this little hat story...as my love of hats has been born out of suffering. i wasn't a hat person until i became profoundly ill with neurological Lyme Disease 10 years ago.

during my sickest years, hats became a way for me to still feel styled & put together when my body was falling apart. being someone who finds creative inspiration & joy from putting looks together this was important to me. in essence, hats helped me feel like me when the symptoms of Chronic Lyme left me with a body that felt foreign, uncomfortable & unrecognizable.

more thoughts on hats, thrifting, chronic illness (& biking) coming to my blog soon. as well as an update about the LDI/LDA Immunotherapy that sparky and i have been undergoing for almost a year now. (i've had a number of inquiries about this specific treatment and i'm sorry the update is taking so long!) 

i'm beginning to write again and it feels good. really good. yet, as good as it feels to be able to start blogging again, i have to admit, i am still having FB anxiety. psshtt! this social anxiety thing is a real beast to contend with but i am just allowing myself to be okay with that. having never been anxiety prone, it's weird to suddenly live with it but that is just the way it is right now. i am wanting to be as real about it as i can and not not feel silly or less than or beat myself up over it. that's just where things are at for me. 

FB weirdness aside, i have recently activated both mine and our dog harrison's instagram accounts again. (as if posting as a dog isn't weird or anything.) i am comfortable hanging out on there and am enjoying creating mini posts. i don't always feel that what i post there is blog 'worthy' so please feel free to find me on instagram under @ticksandtrust. and the dog can be found @worldaccordingtoharrison

thanks for reading my little hat story!

THIS IS MY BRAVE

once upon a time, i used to write a blog
and
then P.A.N.D.A.S came to town
and
shut it down

P.A.N.D.A.S turned my world upside down
it hijacked my brain
and
it made me terrified of everything

P.A.N.D.A.S will do that to you. 

what is P.A.N.D.A.S?

P.A.N.D.A.S is a cuddly acronym for a condition that is anything but. however, it does make for a memorably complex name - P.ediatric A.utoimmune N.europsychiatric D.isorders A.ssociated with S.treptococcal Infections

P.A.N.D.A.S is a condition brought on by exposure to the bacteria streptococcal-A (GABHS) infection, the bacteria that causes strep throat (albeit, it can also be caused by a virus or parasite). The disease turns the body's normal antibodies into dysfunctional ones that attack a part of the brain called the basal ganglia, which controls movement and thought. Bizarre behavior results, often causing a misdiagnosis of purely psychiatric illness.

The hallmark trait for P.A.N.D.A.S is sudden acute and debilitating onset of intense panic and anxiety disorders, mood changes that is accompanied by obsessive compulsive-like issues (OCD) and/or tics. urinary frequency, inability to concentrate, developmental regression, sensory sensitivities, insomnia, phobias, separation anxiety and movement disorders ensue.

http://pandasnetwork.org/understandingpandaspans/about-pandaspans/whatispandas/

http://pandasnetwork.org/DALE2003autoimmune%5B1%5D.pdf

http://www.nimh.nih.gov/health/publications/pandas/index.shtml

that is P.A.N.D.A.S in a nutshell.

in May 2014, i was diagnosed with P.A.N.D.A.S
(this is in addition to my lyme and associated co-infections.)
the diagnosis of P.A.N.D.A.S came 8 months after i had a sudden onset of social phobia, separation anxiety, panic and anxiety attacks, paranoid delusions, intrusive thoughts, depression, pre-occupation with death, suicidal ideations, plans-to-end-it-all, tics and OCD. 

on the harrowing 8-month journey to my P.A.N.D.A.S diagnosis, differential diagnosis considered by mental health professionals included schizophrenia, bipolar, and dissociative disorder.

this disorder is considered relatively rare and is predominantly seen in the pediatric population. it was only identified in the late 1990's, making it even harder to find a doctor who's up on the current literature enough to recognize the clinical signs. the symptoms of P.A.N.D.A.S can be eerily similar to lyme but it is a separate entity all unto itself. this is why the diagnosis took a long time and was difficult to make. in very short, it took a brain EEG, a positive GABHS test result and a trip to DR H to finally put the pieces together. (i will write about the diagnostic journey in another post)

to say this past year has been hard would be the understatement of the decade. having your brain hijacked and falling into the deepest recesses of mental illness has a way of splaying you open and gutting you.

i am in the process of healing and recovery now. after several months of meds and antibiotic treatment for P.A.N.D.A.S, less coffee (ghastly sacrifice) and more chamomile tea (gag-worthy), intensive therapy and biofeedback to help my brain re-wire, i am emerging again. many of the most paralyzing psychiatric symptoms have resolved - but the social anxiety and social phobias still linger. this business of socializing - whether in person or on social media is still quite frightening for me. and while i know it's mostly irrational, my brain still interprets it as scary and threatening. 

sometimes i still feel really terrified. and like i just want to hole up and hide forever. this is new territory for me.

i am working on writing about this chapter in my life. the hubster has encouraged me to write about it. i know this is the next best step in my recovery. writing helps me heal. and i am always hopeful that my story will somehow help someone else heal too - or, at the very least, feel less alone. 

i write nearly every morning. indeed, i have already written pages and pages of journal entries, yet, the thought of putting my writing out there, leaves me sweating bullets, stomach clenched, pulse pounding in my ears, adrenaline coursing thru my veins and bile rising in my throat. and this happens regardless of the subject matter at hand - whether its wanting to share about the tough stuff or the good stuff or even just posting something relatively benign or silly or "liking" something on facebook. 

the fear and anxiety about this can get so big and overwhelming that i begin to feel really small and insignificant. and that my story really doesn't matter. and who am i to think that anything i can say will really make any difference anyway. i don't like having those feelings, so i try to avoid them by making myself really, really busy...

like even CHOOSING to BE in our kitchen and COOK and BAKE stuff. for real. (just so you know how out of character and unusual that is for me, during the 6 years i spent as a single mom, taylor specifically prayed (probably pleaded with God) for a dad who could cook. no lie. and God answered by sending us the hubster and he is a really, really good cook)

i have also been dressing up the dog & photographing him
or

helping him make crafts
or
sew himself a wardrobe

like i said, i will do ANYTHING and EVERYTHING to make myself too busy to launch my story into worldwide orbit.

the weird thing (even more weird than the dog sewing), is that i have always written raw and real and that was never scary to me. but it is now. yes, a lot has to do with the residual effects of my brain getting a good knock about from strep, but i think, if i'm really honest, the reasons are more complex and multi-faceted than that. really, the truth of it, is that i'm scared that talking about it will make people feel all awkward and weird around me
and
maybe even a little bit of nervous to be around me
or
that some will just outright reject me

because here's the thing;

mental illness is polarizing
everyone has an opinion about it
often it is the judgy, condemning ones that sound the loudest
and
that breeds fear and shame

there's another thing too;

who am i to stand here and shed light on such a complicated and difficult subject anyway?

sure, i have lived through a year of infection/autoimmune-induced mental illness but i am very aware that this hardly makes me an expert on the subject. i know i must tread careful and sensitive into this territory. really all i can do is find the courage to share the truth of what my family and i have lived thru this past year even though i am scared to talk about it. 

and how do i even talk about it when i am still healing from it?

this is my brave - this year, well it swallowed me whole.  it took me to a place, where fear was paralyzing and hopelessness pervasive. it took me to an alternate universe that i thought even God would not dare tread. it took me to a place i thought was beyond the reach of God. 

and when i came to the end of myself, this is what i discovered;

jesus was in that pit
holding me the whole time
and
that, well that i want to write about. i want people to know that there is hope. life is scary. it's hard. it hurts. and we all walk around trying to mask our fears and insecurities. to appear put together enough. strong enough. happy enough. confident enough. and maybe we are all afraid that if we reveal our true selves, people will run away from us.

maybe they will

but
maybe they won't.

you know what? something i've discovered over the last little while is that when i've been brave enough to share with folks what i've been thru this past year, they can relate to some part of my story. maybe they know someone that struggles with mental health issues or maybe they themselves do. and i have had the privilege of having some very precious and brave people lean in close to me and whisper, "me too".

that is the beautiful thing about being brave enough to be honest about your pain....it also frees others up to be brave. to say 'me too' and there is healing in that.


one last thing.
it is gonna take courage to post this.
oct 9 was P.AN.D.A.S Awareness Day. i had full intentions on publishing this post that day...but the dog was in desperate need of a new shirt so you know i got busy taking on that really important and worthwhile task.

it's now nov 7. if you are reading this, it means i finally worked up the nerve to publish this and post it to facebook.

it also means that i have hit publish and am fighting the urge to take it all back.

and maybe folks are gonna read this post and wonder how to respond...or they won't know what to say or whether or not "liking" it is appropriate or not. you might even think that in my socially phobic state of mind that any sort of response will freak me out.

and you know what? it probably will.
but
i've thought long and hard about this and i think a lack of response will probably freak me out even more.

so i'm going to be brave and say please go ahead and 'like' this. i know i might feel a bit scared by that. i also know that you might feel a bit scared to hit that little like button. it will take courage. it might even take more courage than you can muster today - and that is ok too - but your like, well, it just might help us all feel a little less alone and a little bit braver about our own secret stories. 

let's all be brave together.