THE NATURE OF THE BEAST

so i've recently had a relapse of bartonella (co-infection of lyme). 

i started antibiotic treatment (septra ds) for it on april 30. on may 2, i had a bit of a herx (a die off of the bacteria which temporarily increases symptoms) but for the most part it was very manageable (rare) and it didn't slow me down too much. 

i've even been feeling a bit grateful for this relapse because the anxiety i've been living with since getting strep in spring 2014 has been virtually non-existent since starting septra and experiencing the herx on may 2. POW! how fabulous is that? that's been an unexpected and superb side effect i will happily take. (and it could possibly mean that this lingering anxiety that we thought was residual damage from strep is possibly related to an active bartonella infection.)

so all in all, i've actually been managing this relapse ok...until this week that is. 

monday i had an awesome time ripping trails with my eldest, taylor and his dog lily. i was just so happy and grateful to be out there doing that. i never ever take for granted the ability to be able. 

Delta Watershed, May 16, 2016

tuesday we had friends for dinner. i was really tired when i went to bed that night but you know, i had to actually, horror of horrors, cook that day and that is always exhausting to me. i woke up on wednesday morning to an explosion of treatment side effects and a pretty intense flare in symptoms - burning nerve pain in my feet, fatigue, brain fog and stiff and inflamed joints. by the evening, the twitching and tremoring had set in.

i wasn't entirely sure if it was a herx, side effects or a bad flare but what i did know for sure was that i'm in for a bad spell.

sigh.

in a flood of tears, plans for the day and weekend were cancelled, phone calls and emails were placed to my doctors, and a treatment plan set in motion. then i dragged my aching, quaking body off to bed. 

i've been in bed ever since.

once again life comes to a sudden and abrupt halt. rather than heading out on my bike for the many adventures we had planned for this long weekend, i'm riding out a plethora of debilitating physical and neurological symptoms in bed.

not at all how i envisioned this weekend going.

this is hard. the hilly terrain of chronic lyme with its unpredictable crashes, cycling symptoms and ever-changing landscape is hard to ride out.

but this is the nature of the beast.

Squamish - May 14, 2016

"If you are feeling frightened about what comes next, don't be. 

Embrace the uncertainty. Allow it to lead you places. Be brave as it challenges you to exercise both your heart and mind as you create your own path toward happiness. Spin wildly into your next action. Enjoy the present, each moment as it comes because you will never get another one quite like it."  ~ Everwood

i'm trying to stay positive. after all, this could be over as quickly as it started. on the other hand, some times a flare marks the start of a long, slow, painful uphill grind that takes months to recover from.

at any rate, i'm trying to use the down time constructively and wisely... to watch grey's anatomy. ha ha. to blog. to create. to process. to organize the photos on my laptop. oh snap! that could take years. to remember to have compassion for my body. to remember that i am strong and i will come back from this. 

the return of my neurological symptoms reminded me of the recording we made during one of my tremor episodes back in october 2013. during my laptop tidy up and in between episodes of greys, i found it. seeing as it is lyme disease awareness month, flashback friday on IG, and i'm once again living with similar symptoms (albeit not as bad), i've decided to post it. (pardon the editing - i'm no editor plus i had to slice and dice it to get it to fit within IG's 60 second video limitations)

i hope it will help shed light on this beast's confounding nature.

from the debilitating yet subtle nuances of it; the fatigue, pain and brain fog that are not visible to the casual observer to the more obvious symptoms such as twitching, paralysis and memory loss.

the bacteria itself is a beast that morphs and changes and is able to silently and suddenly attack your organs and central nervous system in the blink of an eye. you really can be fine and living life one minute and the next you can't get out of bed or think straight.

aside from the twitching, i don't look sick in the video. i'd bet most people would say i even look healthy. this is not unique to me. most people with lyme (or other chronic illnesses) don't 'look' sick -  at least not if you are on the outside looking in. 

the abrupt shifts in ability and our healthy appearances can impact the way others perceive us and cause them to question the severity of the illness we live with.

compounding the confusion is that most of us work really hard to disguise or mask symptoms when we are out in public. which, i guess in some ways, defeats the purpose of trying to seek understanding but most of the time it's just easier to try to appear 'normal' rather than try to explain this inexplicable beast to those who don't have it.

and, sometimes, we hide it because when we have been open or vulnerable about the true nature of this beast, we have been shamed, ridiculed or accused of attention-seeking or over-exaggerating.

i hope this video can shed some light on that. i think we all live with some hidden pain or hurt that impacts us in ways no one else can see. i like to think that if we believe this to be true, then it's not such a far stretch to believe that someone can be seriously sick and yet look fine.

be kind. you never know what kind of battle someone is fighting behind closed doors.

ONE STEP AT A TIME

i'm wearing my thrifted polka dot shoes today. aren't they spiffy?

they make me smile and they remind me to just take this journey one step at a time. as it turns out, they are also a super snazzy way to jazz up a hospital-issued wardrobe.

so here's the thing - i'm sitting in the hospital awaiting a CT Scan right now. for me. i've been struggling with some pretty debilitating symptoms since mid-january. primarily, intense pain and pressure in my spine, vertigo, nausea & increased vomiting (as in i'm vomiting more than the nightly vomiting episodes that have plagued me for 3 years now)

aside from the vomiting, the rest are all new symptoms for me.

we haven't talked much about my struggles the past 4 months for several reasons...


...for the first few weeks we just thought i had a really bad flu. which at first made sense - after all, my symptoms were "new to me" and came on suddenly. on a wednesday morning in mid-jan, i was woken out of sleep by intense nausea and back pain, within hours i was vomiting. however, as january ebbed into february, the pain & pressure in my spine increased and i became so off-balance that i had difficulty walking. as a result, i was unable to get out of bed for most of february. as my functionality began to diminish, the hope that this was nothing more than the flu faded away.

...and then it all just felt too surreal & too unbelievable to consider that sparky and i could possibly be in relapse within a week of each other. (my symptoms began the week before he fell ill again.) 

...because coping with sparky's relapse took all our emotional sharing quota - there is only so much you can publicly bleed about at one time.

...because there have been more questions than answers and everything has been about as clear as mud.


in march, i was seen by a local doctor who suspected that my spinal pain & pressure was infection related. (i also had elevated WBC) he prescribed antibiotics. within 72 hours of starting the antibiotics, my symptoms intensified so greatly that all i could do was lie on the bathroom floor and puke and cry. the hubster put in an emergency call to our LLMD, DR H. with sinking hopes, we suspected that the sharp increase in symptoms was most likely a herx...an indication that my symptoms were most likely lyme-related. 

however, DR H was concerned that my symptoms were also strongly indicative of another condition. (lyme often mimics other conditions) my doctor here agreed and they both felt this warranted further investigation and felt it was necessary for me to undergo several tests to rule out the condition my new symptoms are indicative of.

so that is where i'm at...in probable relapse alongside my son. today's scan will either confirm my relapse or reveal another condition. affirmative results in either direction will be difficult to face. this journey is so difficult to walk...but i'll just keep moving through it one spiffy step at a time. 

REALITY OF RELAPSE

after 7 months of being stably improved, parker has relapsed
and so,
the fight begins again.

yeah, some battles must be fought over and over and over again but like the hubster said, "no commanding officer would send a soldier to the front lines as often as our sparky has been sent."

the reality of relapse, well, we had suspected it for several weeks now.
he has been home and more or less bed-bound with severe joint pain, brain fog, nausea, dizzy spells, etc since january 19. 

the last 2 weeks has been a blur of appointments and tests. last monday his USA specialist, DR H, confirmed our suspicions - that our boy is in relapse -

we weren't suprised, no. but shell-shocked? yes.

it is one thing to suspect
it is another to have that suspicion confirmed.

it felt like a bomb had been dropped on us
and our world imploded. 
again.

at the beginning of last week, i looked at the hubster and wailed, "i feel like someone died."
"me too." he choked out.

the thing is... relapse IS a loss.

our family is reeling.
torrential tears. white hot fury. wooden numbness. darkest despair. deep soul sorrow. paralyzing fear. 

so i guess the fact that we are cycling through stages of grief makes sense. 
when we consider how far sparky had come in the past year and how it's all been snatched away again - it's a staggering loss.  we had just begun unpacking the trauma of the last 5 years of his fight and now we are re-living the nightmare all over again.

we are living loss again.

we are stumbling numb through a twilight zone we had dared to believe we'd left behind.

and i can't stand it.
i can't handle it.
i am screaming on the inside.
i want to rip my eyes from head so i don't have see
i cannot watch this happen again
and
yet we are. we have.
the last 8 weeks we've watched his decent into hell.

seen him stripped bare of what he had regained
laid up and splayed out in agony

oh my God, where is your mercy?

how do you even find the words to begin to explain the reality of relapse?

it means living with no known time line. no way to know how or when or if he'll come out of this. one must hope, always hope, and yet somehow be prepared for the worst. 

the reality we have known is that it took 5 years of aggressive treatment to get him to remission the first time around.

is that what we face again?

what if it takes another 5 years before he's able to go back to school? it seems incomprehensible but it's happened before. that is the chilling reality.

he's had a childhood full of IVs and pills and tests and needles and doctors visits 
and
he had only just left that behind.

relapse means seeing images we never ever wanted to see again.

relapse means watching your boy get hooked up to IV again and simultaneously re-living his previous 5 years of IV treatment. it's stuffing down the avalanche of grief as your mind replays images of him hooked up to IV at age 9, 10, 11, 12, 13, and 14.

last week, parker re-started IV and it was gutting.
the hubster's heart broke
i heard it shatter into a thousand pieces.

a lifetime will not be long enough to heal that. my God, we will never ever be the same.

grief.
full stop.

the reality of relapse means we are gearing up to fight again

it means pill boxes and IV appointments
it means travelling to the usa for doctor's appointments
it means staggering medical bills

it means having to dig deep before you have the strength to do so.
it means secret tears spilling onto the cold, hard bathroom floor in the middle of the night.
it means fighting the prevailing thought that this will never end.

it means flailing in the dark with no easy answers
it means grappling with intense medical decisions 
it means sleepless nights and churning thoughts

it means your world stops but the world keeps on spinning
and the healthy world
it keeps on living and thriving
while you are plunged head long into the alternate universe of chronic survival 

the hubster and i are mostly numb
and we are walking wounded through an oppressive fog

relapse means contradictory feelings and needs

it means disconnecting from the world yet yearning for connection

it means needing help but not knowing what would help

it means needing to unburden yourself but not wanting to be a burden

relapse means you avoid casual interactions - 

it means bolting from a store just to avoid talking to someone you know
not because you don't like them or want to talk but because you don't know what to say. 

because you just can't fake it that day.
smile bright. nod your head
deflect the inevitable greeting, "How are you?"

because how do you answer that?
how do you tell people my kid is sick. again.  and we are living loss all over again and we fear this hell will never stop.

no, you can't say it. can't bear to say it out loud...because if you do, if you open up, open that wound and let it spill out? 

well, they'll be calling clean up in aisle 15. and that store doesn't have enough employees to scrape you off the floor.

and let's be honest, 
relapse means you even avoid acquaintances, co-workers, and friends 
and
sometimes they avoid you too.
it means few outgoing messages and even fewer incoming ones.
it means avoiding fellowship because you can't afford to risk hearing something trite or some token scriptural quote.

relapse means you are walking wounded with your heart bleeding out and just trying to hold it together so you don't fall apart.

it means a stoic eldest brother
and
it means a little sister scared to go to school and leave her sick brother at home.
it means seeing her red-rimmed eyes spilling hot burning tears and hearing her whisper,

"why is this happening to my brother again?"

it's you crying right alongside her and asking the very same unanswerable question... 

why God? why?

it's the old soul eyes of your boy who has suffered so much
it's the litany of emotion you see there 
his rarely spoken fears and unshed tears 

too raw, too brutal, too overwhelming to give voice to until one anguished, hushed whisper coming late one night, "this is so depressing mom, it's hard to believe i was feeling so good 2 months ago."

2 months.
it's been 2 months already you realize with a wretching twist of your gut.

2 months since the rug was pulled out from under him again.

that is the reality of relapse
and
i wonder how does he keep on keeping on?
his world shrinking from view, 
the long, lonely weeks with infrequent visitors
and
the worry that shouts loudest of all - how much more of this can he take before he breaks unfixable?

Do not let your fire go out spark by irreplaceable spark in the hopeless swamps of the not-quite, the not-yet & the not-at-all. 

Do not let the hero in your soul perish in lonely frustration for the life you deserved & have never been able to reach.

The world you desire can be won.

It exists. It is real. It is possible.