WE CAN DO HARD THINGS

i know there has been an extended absence since my last post. and i certainly dislike popping in finally with a "hi there, things stink big time right now" but that is the truth. we've hit 'crisis mode' again and we could use an extra dose of prayers and support. 

over the last 3 weeks, parker has had a significant relapse.

at the end of september, he developed a type of nystagmus that is indicative of central nervous system dysfunction. this was a sudden onset. it is a new symptom. when the nystagmus first started it was only present in his central field of vision. it is now present in all fields of vision and he can no longer track side to side or up and down. his eyes bounce or dance so rapidly up and down and side to side, they appear to be rotating. it is very upsetting and worrisome to see.

our docs have been trying to trouble shoot what the cause is and have tried numerous interventions. they've addressed and treated all the obvious causes

neurotoxity. check. 
vitamin deficiency. check.
re-adjust meds. check.
medication side effects. check.
standard labs done. check. 

despite their best efforts, the nystagmus remains "unexplainable" and has gotten progressively worse along with an intensifying of his regular, run-of-the-mill symptoms...headaches, nausea, temperature dis-regulation, flushing, rages, insomnia, fatigue and most notably, his joint pain has returned with a vengeance. he is in agonizing pain again all day, every day. adding insult to injury, he will have sudden attacks of an intensifying of the pain. these episodes take unbearable to a whole new level. they come out of no where and leave him curled up in a ball writhing and moaning or screaming in pain.


his docs are worried. he is having countless investigative lab tests done to see if they can pinpoint the underlying cause of this sudden onset of nystagmus and his rapid decline. his GP has ordered an MRI. we are praying the referral will be fast tracked through the system and scheduled ASAP. 

parker says he feels as bad as he did when he first got sick 3 years ago.
that is an inconceivable place to be.

3 years ago, parker came home from his first day of school "sick". within 6 weeks, he was in a wheelchair. nothing could have prepared us for the horror that was to come. 

i have a vivid recollection of when parker began to lose control of his legs. he was walking down the school hall way and his legs just kept giving out from under him. he had a dramatic limp and then every few steps, his legs would buckle and he'd fall to the floor or grip the walls to steady himself and after a few moments, he would continue to systematically plod down the hall to his classroom...a tremoring limp, a shaky step, then stumble to his knees, and then the whole cycle would repeat one painstaking step at a time. it was a disturbing and terrifying sight. i remember his teacher, who was walking down the hall with us, suddenly grasping my arm and with tears in her eyes and a catch in throat whispering, "this is breaking my heart." yet, his bravery and determination were equally breathtaking. 

his deterioration happened at lightening speed. his pain crippling. in short order, he went from this limp walking, to crawling, to belly sliding to not being able to ambulate at all. he lost 15lbs, had dark under eye circles, rashes, migraines, nausea,and difficulty breathing. he developed full body tremors and night time incontinence. he had severe rages and his cognitive abilities ebbed away. his agony and suffering horrifying. it was as if he was being sucked into a vortex and we were screaming and stretching out our hands to snatch him as he fell from our grasp. his pain levels were so high, and we could do NOTHING to alleviate his pain and suffering. there was absolute desperation to find something to bring relief. 

pain meds.
IV narcotics.
injections.
ice packs.
topical ointments.
epsom salt baths.

the warm baths aggravated it (often do with lyme) there were many times, as he lay whimpering in the bath tub that i sat on the opposite side of the door, my back pressed against it, knees pulled up against my chest, fetal position, head in my hands and bawling my eyes out. the sounds coming from my son, my child were not even human sounding.

these painful memories flood back as vivid as the day they occurred. i write of it now, not out of some macabre sense of dredging up old pain or revisiting old haunts... no, it's quite the contrary. i look back on those memories and am stunned that we are still standing today. it is a horrific journey yet there is no way it was survivable without God's presence. 

i look back and remember the "yesterdays" that have once again become our "today"...in order to remind myself that He is here now. just as we have had to carry our son's broken body, God has carried us. He still does and because He sustains us, we have the strength to stand today.

we can do hard things. 

LIVE. LOVE. CROW.

i'm not sure how it began. or when exactly. this obsession with crows. i think it started as a joke. and now i collect them. and i'm not a collector. not at all. but i make an exception for crows.

they are scattered through out my home. my 3 favourites are prominently displayed on my fireplace mantel. 

i love crows. i don't know why. i can't explain it so i won't even try to. i read the new fad for this fall is bird prints. if there is a crow one to be had, i'll be the first to buy into that fad. ohhhh, i can't wait.


i'm sure one day i'll be known as the 'crazy crow lady.' 
who knows... maybe i already am!

after all, i got crows for my birthday.

my dear friend and her precious daughters got me crow bling for my birthday! i nearly did a back flip when i saw them. spectacular.

yes, today is my birthday!
I AM HAPPY TO BE ALIVE. 
i haven't always felt that way.

I AM GRATEFUL TO BE ALIVE.
that is something to crow about.

SORTA SOARING

i thought it was high time i shared something on a more positive and lighter note.
here goes...


i am doing well.


isn't that wonderful?

i am still barfing daily. some days i vomit upwards of 8 times a day. yes, this is still ongoing since march 14. i have not had one barf free day yet. DR H started me on IV nutrition back in May and it helps so much with my energy levels, moods, resolved my nauseau and helped decrease the number of times i vomit on any given day. as long as i 'ingest' 4 nutritional IVs per week, i feel pretty darn good.


and that is very cool...and so is looking down and realizing your outfit color matches your iv line. hee hee.

it is good to know that they are helping but the pseudo nutrition is no way to live. it's extraordinarily expensive and my poor little veins are taking a beating and my arms are littered with "track marks". i recently tried to get by on as few as possible because the cost of them is killing us. as a result, my nausea returned, my vomiting increased and my energy plummeted.

my little tracks

it totally sucked to be dragging myself through the day again, however, i was still managing to function at an above average level for me. i was still hanging on to a sense of well being whilst holding on to a few dollars and cents, so i felt like i had struck a "do-able" balance.


until, that is, my blood counts went haywire.


the past 3 weeks, my blood work for my kidney function has made a significant jump. elevated numbers are not a good thing. it is concerning. we are not at 'freak out' levels yet but my docs are concerned and i am being closely monitored. which means more needle sticks. great.

my most recent lab work also revealed i've now developed neutropenia, low platelets, borderline anemia and various electrolytes are out of whack. all of those coupled with the kidney issues only began to be out of range when i cut back on the number of IVs i was doing. 

clearly, i absolutely need the IVs.

thankfully, my folks, an anonymous friend and a known friend have generously helped us cover costs so that i can receive all the IVs i need for the next 4 weeks. we expect this will result in a rapid improvement in my blood work. we are also trying to figure out a more affordable way to meet my body's needs. i continue to be amazed at how God provides for our financial needs. i'm still learning to keep my eyes solely focused on Him - even when the bank account is riddled in red and minus signs. i don't understand His ways - common sense would tells me it'd be a whole lot simpler for Him, and everyone involved, if He just stopped the vomiting and healed me now - however, He is GOD and His ways are better than my ways...even when they leave me scratching my head and saying, "really, Lord?"

i continue to be reactive to all fruits and vegetables. it is incredibly mystifying. none of my docs can figure that one out. what do i mean by reactive? oddly, this does not appear to be a contributing factor in my vomiting.  the symptoms i experience in relation to the ingestion of vegetables are not in my gut - they are systemic. 

i recently tried to see if this reactivity was persisting.

one evening, i ate some nachos - they had a sprinkling of chopped green peppers on them. i ate them partly because i was too lazy to pick them off. but also as a test, per say. you see, lyme symptoms strike in such unpredictable patterns that sometimes it is difficult - even entirely impossible - to know what it was or is that triggered a sudden onslaught of symptoms. however, i have been feeling so well that i was pretty sure i could finger the green peppers as the likely culprit should i suddenly be hit with a round of nasty symptoms. throwing caution to the wind and in the name of scientific curiousity, i quite literally bit the bullet. 

and within 2 hours, i was down for the count. i had a sudden on-set of profound fatigue - akin to being highly sedated. the following morning, i had joint pain and stiffness that made it difficult to get out of bed. my muscles ached as if i had just run a half-marathon. in fact, i spent most of the following 36 hours in bed. yes. it is that bad. i also had hives, dermagraphism, red-rimmed eyes and a puffy face. i felt toxic. i felt like i'd been run over by a produce truck. ha ha.

 

it is confounding and puzzling and the oddest of odd. if nothing else, at least, i am consistently odd.

oh wow, i can't believe i started this post with an "i'm doing well."!! 

rather ironic that what follows is a run down on dismal blood counts, kidney issues, vomiting, and a monologue on how veggies nearly render me comatose.

guess it's more like sorta, kinda, not really well type of well. yet that doesn't quite hit it on the head either because i honestly am enjoying a level of health that i haven't had since getting profoundly ill in 2006. i guess i could say i have a sense of well being...and despite challenges, i am sorta soaring. i am spreading my wings and testing them out.

it is profound to think that i have not been on any IV abx since LAST august. that is extraordinary. i am currently on oral abx for that pesky mycoplasma infection but i am not on any abx specific treatment for lyme. we still believe my barfing is related to the myco infection and not lyme. 

once we started treating my mycoplasma infection and DR H got me started on my nutritional IVS (in may), i experienced a prolonged state of well being. when my body is appropriately 'fed', my energy levels soar...as a result, i am sorta soaring. literally. at least i'd equate flying down the longest zip line in Canada to a sort of soaring. it feels good. real good.

soaring with my baby girl
RockRidge Canyon - June 2012

click here to experience the zip line via you tube.