SO WHAT HAPPENED?

oops, i did the disappearing act again. darn! i was on such a roll with posting again and then whoosh, 3 weeks go by and nada. 

so what happened?

a few short days after the premiere airing of ticked off, we flew out to SF to see DR H. i planned on posting my thoughts about the documentary once we got down to SF. but, clearly, that did not happen.

so what did happen?

life.
lyme. 
and the roller coaster that life with lyme is.

so what happened?

in short; a sudden onslaught of nausea, increased vomiting and tremoring

in many ways, what happened is not explainable. 

it is often very hard to find the words to explain what happens in the world of lyme. my blog is meant to give a glimpse into what goes on behind closed doors but many times, it is just hard to find the words to describe what that looks like or how suddenly things can change. 

so we (graham and i) did something we've not ever done before - we filmed the sudden attack. we thought it might give folks a new perspective on what lyme looks like. lyme patients often hear "you don't look sick". what does sick look like anyway? lyme has a way of redefining that. after all, sick doesn't always look limp, pale and lethargic. 

at first, we just recorded a few seconds of footage but then, inspiration hit and we decided to make it into a "video blog" and share it on FB. we were completely caught off guard by the response we got... it made a huge impact and people wanted to share it as they found it to be a very useful awareness tool. so, i thought it would be a good idea to post it here on my blog as well. 

a short back story of what happened before:

this attack came on very suddenly during our second office visit of the week with DR H. prior to this, i had been feeling "ok". in fact, the day before, we had spent the day on the beach at santa cruz. i had started a new anti-microbial treatment protocol 6 days earlier so a herx reaction was somewhat expected - however, no one was expecting what happened to happen. just before the tremors started, i began throwing up. i have been dealing with daily vomiting episodes for 19 months now, so barfing is not out of the ordinary for me however, there had been a steady increase in the vomiting in the week leading up to this and it was accompanied by nausea. the nausea is a new thing. the vomiting began at DR H's office. before i knew it, he was IN the bathroom with me. shortly thereafter, the tremors and twitches came on. i am grateful that i was with DR H when the tremors started. he was very caring and reassuring and immediately implemented medical interventions but i have to admit, i was a bit mortified to be barfing my guts out in front of him.

here's the video footage we shared on FB. it has taken me quite awhile to post it here. it was filmed on october 17 in our hotel room in california- it is but a brief glimpse into what is happening...i promise, there is no footage of barfing!

so what happened since the video was shot?

we are home from california and mainly, we are just taking it one day at time as my medical team tries to sort all this out. i saw a specialist at a local hospital just shortly after arriving back in canada. he was very lovely and he wanted to try and set up some treatment for me which he felt could be beneficial. we were shocked and so grateful to be offered help. we left that appointment feeling as if we'd just won the lottery! however, last week, i got the very disappointing news that this had fallen through. i do believe this doctor was very sincere in his desire to help but his hands are tied by red tape and bureaucracy. it is so difficult to have your hopes raised only to have them come tumbling down again. it is what it is, and i must just pick up my hope, tenderly brush it off and carry on. 

DR H has set up supportive IV therapies for me thru a local ND and has started me on meds to address adrenal issues. i have had 3 very mild and mini tremor attacks since getting home. i'm on very powerful anti-nausea medication which has helped with the nausea a bit but has not stopped the episodes of vomiting. i have lost 6 lbs since the video was shot. i am tired and weak and as a result, have been laying low but i am hanging in.  i would appreciate your prayers. please pray for wisdom for my docs as they sort out what happened and what is happening. please pray for me as i continue to battle on.  

SUGAR BEAR CRISPIFY ME

one day we were in the cereal isle of the grocery store and avery suddenly pointed at a box of sugar crisps and said, 

"sometimes sparky looks like the sugar crisp bear"

she was right. sparky does closely resemble the sugar crisp bear when he's on narcotic pain meds
or
when he's herxing and neurotoxic

we all had a chuckle over it and from that day forward, whenever sparky is loopy or medicated, we call him the sugar crisp bear.

we knew he would need sedation for one of the procedures he recently had. he, also, had to be pre-medicated with benadryl. so, he knew he would head into his sugar crisp bear state of being.

once he was prepped for surgery and a peripheral line had been placed, they were ready to give him the sedation. 

he looked at the nurse and said,

"go ahead, sugar bear crispify me!"

obviously, THAT had to be explained. the sugar crisp story gave way for a moment of lightness in what was a bit of a tense situation for everyone. 

for reasons unknown, they had difficulty sedating him and it took a considerable amount of mediation before he was crispified.

because the sedation wasn't kicking in, the surgeon said that it would be ok for graham or i to sit in on the procedure - so long as we could handle it. after all, they had their hands full with sparky - the last thing they needed was another patient.

i could barely contain my excitement! are you kidding! handle it? i was all over that - hek, i would have scrubbed in and assisted if they'd offered! 



the nurses told him that a side effect of the sedation was that it makes your nose itch. if that happened, all he had to do was let the nurse know and she would scratch it for him.

sure enough, it wasn't long before he had to take her up on her offer.

after several more doses than expected, he eventually succumbed to the sedation...and in his crispified state he did encounter a ginormous bowl full of noodles, grew 7 fingers and a had a giant spoon chasing him.






it's hard to believe that 2 weeks have already come and gone. his recovery and healing from the procedure has gone way better than expected. PTL! we had hired a private nurse to come in to help with care...a great big, burly guy nurse. he was super - however, after one visit, and observing my care techniques, he felt that i was more than capable of taking over and doing it myself. 
ugh. 
am i capable? yes. 
do i want to shoulder the responsibility myself? NO. NO. NO!

somebody, please, sugar bear crispify me!

EXTRATERRESTRIAL PREDICTABLY BARFALICIOUS BOVINE

extraterrestrial predictably barfalicious bovine
that's quite a mouthful isn't it?
forget saying it
imagine being it
i am it
i am an extraterrestrial predictably barfalicious bovine
shall i explain?

in order to do so, i suppose i have to back track a bit. i recently realized that i haven't actually posted a full blown medical report for awhile.i think the last major one was back in february! wow. it's been that long? that's crazy - and i'm not anymore! isn't that awesome? since february, we've had 2 in-office appointments with DR H, numerous phone appointments, 3 in office appointments with DR A (seattle doc), and many unscheduled phone calls and faxes to DR H to put out both minor and major crisis.

yes, a lot has happened, and a lot has changed over the last several months. in regards to my health, aside from the whole ET + Barf + Cow thing, it has been good. i think i have posted enough, either here but mostly on FB, about my barfing episodes. just in case, you've blocked it out or forgotten or don't follow me on FB, let me refresh your memory. i'll try to refrain from the more graphic, nitty gritty details of my barfaliciousness.

here's my very condensed version - which is difficult. it's hard to try to explain a phenom that makes little sense. (read the more detailed explanation here - a'barfing we will go) if you remember, my barfing is not nausea/gut related. my barfing episodes started at the end of october (2010). this was the day after i had a mondo seizure that sent me to hospital. since october, the longest time frame i have gone without throwing up is a 14 day streak.
sometimes i am lucid when it happens.
sometimes i am not.
right before i barf, i get a fuzzy feeling in my head - my head gets all tingly and numb (similar to the sensations i get right before a migraine starts) and then i get this really weird short cough, and then it starts. once it is over, i'm not overly lucid. the pressure in my head (internal head pressure) gets really intense - hard to explain that feeling. it is as if my head is expanding from the inside out. this in turns causes immense pressure to build behind my eyes. they feel like they are bugging out of my head and i have great difficulty focusing or seeing. it dawned on my the other day that my head feels how ET looks. big head. bulging eyes. neck too woefully long and thin to hold it up.


there is no rhyme or reason to why or when or even what is really causing it. it is not stomach related, it is definitely brain related. DR H believes that the original seizure triggered the wire connected to the barf switch in my brain and when the breaker shorts out, i barf. in fact, all my doctors, are pretty convinced that the barfing is a type of atypical seizure. my doctors have pulled out every tool in their arsenal to try and put a stop to it. meds have been stopped, switched up, or changed. this, that and the other has been tried. all to no avail. so far.

as the months have passed, there have been times where it's appeared to be settling down. about the minute we all think we've got it under control, it returns with a vengeance. at the end of february, my weight dropped to the lowest point it's ever been. when i saw DR H in office in may, he tweaked dosing on some of my meds and started some new ones and while it didn't stop it, it has finally settled into a fairly predictable pattern.

for example, unless i'm herxing, i only barf after 5pm. this means that whatever food i'm able to eat prior to 5pm, generally stays put...of course there are exceptions to that rule (that's where the cow thing comes in) as a result my weight has come back up to normal and stabilized. over the past 3 months, i've settled into a fairly predictable pattern of barfing. generally speaking, about every 3 days, at some time past 5pm, i can be found doubled over my porcelain bowl. if i am not at home, i prefer barfing anywhere but in a public restroom. this means i've thrown up along roadsides, in parking lots and behind trees. the week before a herx, the barfing increases in frequency to every single evening. this lasts about 5-7 days. again, only after 5pm. during a herx, i barf all day long, every day for 3-5 days straight. once the herx has cleared my system, i return to my "regular run-of- the-mill" every 3 days or so of barfing.

i've been nicely settled into this pattern for some time now. barfing sucks but at least it's predictable. just about the time it was becoming predictable, i started dropping words again. really bad. how do i explain word dropping or word reversal? it's like having your very own language. slightly extraterrestrial, if you ask me. lends itself well to the whole ET look a like thing i've got going on. so i speak but i'll leave out key words or i'll string together a sentence - which makes perfect sense to my ears but leaves the receiver completely confused.

for example here are a few from the archives:

"the fridge is in the chicken on the bottom thing."
translation:
"the chicken is in the fridge on the bottom shelf."

"i'm god is parking in the walk."
translation:
"i'm going to take the dog for a walk in the park."

"garsninf"
tranlsation:
"island gardening is fun"

and so on and so on and so on.
makes for some very interesting conversations. most of the time i'm rarely cognizant of the fact that i'm doing it. my only indication that i've said something odd is the puzzled looks, blank stares or raised eyebrows from those around me. nice. i try to avoid talking to people who don't know me or the situation. most often it occurs in the privacy of our own home, clearly it's made for some pretty humorous moments. and "wow! mom! do you have any clue what you just said?" altho' taylor mentioned the other day that it's more the norm than not, and that he doesn't even notice it so much anymore. or if he does he can pretty much decipher what it was i meant to say. so, just so you know, if there ever happens to be an alien invasion, you can count on our family for translation services...

me and taylor at your service

the word thing impacts my writing as well. the frustrtating part with that is that not i aware of it while i am typing. sit always the discovery after the fact. i can be typing along, thoughts comeing rapindly and clearly, impressed with my claireetee and the speed and cleanse with which my thoughts are transalting from head to key board to scream. then stop i to take a breast and i'm contorted with a page of scuiggly red lines. irritating. and weird words litering the page. rather out of this worldly. is it the easily typed or grammatical errors that are the "norm" to misspell? no. not if you know my regular typing ability and proficiency. and oddly, the rarer, harder words i don't seem to have difficutly spelling - it's the fmilyer daily words of common everyday lanugewedge that stump me (albeit i have no idea they've got me stumped while i'm typing them - does that make sense?). i've purposely not editied this paritcular pargraf to give you a lovely smapping. honetlys. and judging from editing tme today, this is a good day. some days are worse than others. AND now you understand why i don't bother with punctuation or capitals in any of my posts ever...i would live in editing purgatory if i did.

anyhow, i've had word reversal issues before, but not for a long time. this actually came on very suddenly and with some severity - roughly over the past 6-8 weeks. this coupled with my barfing and my increasing head pressure got DR H pretty concerned that one of two things was now going on:

1. encephalitis
or
2. the lesions in my brain were getting bigger

he wanted me to have an MRI immediately.
DR A (my canadian doctor) put in an requisition for one.
on average, the waits for an MRI in canada are about 9 months long.
we were grateful when i was called and scheduled for one within about a week of the request going in...apparently, "suspected encephalitis" on the requisition greatly reduces wait time. we were very thankful to get in so quickly.

the MRI was done at the beginning of july
and
then we waited for the results
a long, nerve wracking 10 days
we weren't expecting good news
and
we couldn't believe it when the results finally came back...

we were nervously waiting in DR A's office. going in to the appointment we knew the MRI report stated that ischemic disease was present, lesions had been found and a follow up MRI was needed
it sounded bad
and
coupled with the barfing, fevers, head pressure, word issues i've been grappling with for the last several months, it sounded really, really bad
and
then DR A walked in and delivered the news...

"your lesions are shrinking! they are shrinking!" exclaimed DR A. "this is great news! i am so relieved!" (the look of relief on his face was tremendous - i would not at all been surprised had he leapt off his stool and begun to pirouette around his office)

he stayed put but excitedly continued, "obviously, the overall findings aren't great still BUT the results from this MRI actually are an IMPROVEMENT over the last one. and these lesions are in keeping with your lyme diagnosis. and there is no doubt that they are smaller."

the lesions in my brain are actually getting SMALLER?

my brain nearly blew up when i heard that.
it's amazing news. it's shocking. as weird as it sounds, sometimes good news is as hard to digest and process as bad. especially when you are not in the least expecting it. it took a few minutes for it all to sink in. graham, myself and DR A just sat there looking at each other with silly grins on our faces. in the back of my head, i was still half expecting DR A to stand up and do the cha-cha-cha or a cartwheel or something. generally speaking, he's a pretty calm, low key, very conservative guy but he looked exuberant enough to do something a little bit crazy.

naturally, the downside of the super duper awesome MRI findings, is that my barfing still sort of remains a puzzle. once DR A came down from cloud 9, we re-hashed the barfing again; re-evaluating the symptoms, re-looking at the pattern of barfing and all it's accompanying weirdness.
nausea related? nope.
food related? nope.
med related? nope. nope. nope. and nope.
is it weird? yup.
weirder than you know. even what i barf up is weird. spare you the details (again) but hmmm, how do i say this in a restrained, diplomatic manner? i don't always barf up my most recent meal. i may have just eaten supper but it's breakfast that i end up regurgitating. strange.

DR A listened to it all again. and then he gave me a long, surmising look and said,
"maybe you are a cow."


oh can you believe it! i EXPECT smart ass commentary like that from DR H but not DR A!
i was rendered speechless...and so he cheekily continued...

"maybe you are part bovine! medically, that would explain a lot. after all, cows have 4 stomachs."

and then he started to chuckle
and
graham burst into laughter
and
i just crossed my hooves across my chest and mooed disdainfully at them both.


as distressing as the barfing is, at least it's predictable. in fact, there has been a general trending towards predictability since the middle of march. better yet, there has also been a general upswing in my overall health...

i'm doing relatively well.
my barfing is fairly predictable.
my herxing is fairly predictable. it's still no walk in the park but it is manageable
and
i've been able to maintain some semblance of consistency as a result.

i have been able to start a modified exercise program again - which i haven't been able to do since last summer. i began this in april. since then i have been able to consistently exercise 3 times a week. this includes 20-30 minute walks and light weight lifting. on a good day i can use 5lb weights and do 2 sets of 8 reps of bicep curls, hammer curls, tricep kickbacks, shoulder presses. on a rough day, it's a struggle to get thru 1 or 2 reps. sometimes i have to cut the whole program by half BUT the key here is that i'm maintaining it and consistently able to do some version of it 3 times a week.

i still struggle. some days i struggle to get thru doing the simplest of tasks but in a lot of ways, i'm really kicking butt. i have days where i just "live my life". some days it's effortless. EFFORTLESS. that's a really big deal. so much of living my life, even on a "good day", has meant gritting my teeth and dragging myself through it . even doing the most mundane, simplest and menial of tasks has required so much energy and effort. monumental effort. relentless pushing. therefore every time i do something, however small it may be and have it be effortless...that is a gift...and cruising through a whole ENTIRE day unencumbered by fatigue or a walloping whack of pain or not needing ear plugs, well that is worthy of celebration. sometimes i have to pinch myself to believe it's really happened. the newness of feeling "normal" is peculiar.

effortlessness is a very peculiar wonder.

~photo by my friend tammy herman -
who's incredible at capturing effortless moments

the general trend over the past 3 months has gone like this (on a month to month bases):

i have 2 pretty decent weeks per month - which include many effortless days...sure there are health "hiccups" during those weeks...i still barf, i have days where i hit that 3pm brick wall of fatigue, my CNS symptoms flare but for the most part, i'm up and at it all day.

sometime during the third week in, the red flags start. the barfing picks up. by evening, i'm comatose on the couch. i can function during the day, but it is a struggle, some days more than others, i push, i pull, i grit my teeth, i push some more to get through the day, i do what needs to be done, i try my best to plan ahead because i know what's coming next. the HERX.


i HERX every 4 weeks. bang on. so novel for it to be that predictable. for years, i've lived in terror of herxing. it is so horrible a thing to endure. and for the most part, i never knew when it would hit and when it would end. my longest herx lasted 3 months. herxing was terrifying. it was unpredictable. a mind twister and body snatcher. wretchedness beyond description. it is living death. never, ever did i feel like i had the upper hand.

over the last several months, there has been a turn around in my body's ability to handle herxing. it's finally detoxing more effectively. each time i've experienced a more manageable herx, i've gained a little piece of confidence in my body. i'm beginning to TRUST my body again. it can cope. it can detox. it can survive the unimaginable. it can have the upper hand. it will prevail. in honor of this, i've re-named herxing. herxing is now referred to as "spirochetal death row".

me this week in my spirochetal death row t-shirt

spirochetal death row is still grim and it ain't pretty. but it ain't what it used to be - it still renders me completely debilitated but that is a dramatic improvement. spirochetal death row still involves fevers, non stop throwing up, joint pain, drugged out, spaced out fatigue, low level anxiety, sensory overload, inability to focus, concentrate, or interact with my world. too tired to think, feel or move
but that is so much better than what it has been. the physical symptoms were hard enough to bear, the brain stuff, and the psychotic episodes were horrendous. ativan used to be a way of life, a very needed survival tool. i've only had to utilize that tool, 3 times since march. 3 pills. that's it. and the general tending has been towards a short stay on death row. on average, it's been over and done with in about 5 days. and afterwards, my body is bouncing back magnificently fast.

this week i expected to herx. i'm at the 4 week cycle and it happened. it started friday nite. hit with fury on saturday. today is day 5. this one's hanging in a little longer than i'd like. but it's been manageable. i've been barfing a lot more, and not been able to keep in food, liquid nor any of my detox meds - which i believe is impeding my recovery time. this time around, the only thing i've kept down in the past 4 days, is a couple handfuls of reeses pieces. how crazy is that? nothing else, no matter how bland, no matter how restrictive or selective the food choices, i've barfed it all up. bland, wheat free, sugar free, gluten free. up it's come. try this, try that. weak chamomile tea. ginger tea. sip of water. lemon water. plain water. etc. etc. etc. NOTHING stayed down and let me make this clear, I AM STARVING.
anyhow, yesterday, i got a very weird craving for reese's pieces
so bizarre
i haven't had those in a million years
they don't top my list of favorite indulgences
but
i nearly crawled out of my mind i was craving them so bad
i lay in bed OBSESSING over them
i could not get them out of my mind
and
so i got me hands on some (thank you to parker )
and
then i indulged in their gooey, peanut buttery, candy coated goodness
they were every bit as good as i imagined them to be
i crammed handful after handful into my mouth - it was not a pretty nor dainty sight... then half way thru the bag, it hit me...

who else has a big head, bulging eyes, long, thin neck and is preoccupied with reese's pieces?




i am ET
and what could be more peculiar than that?

i did NOT barf up any of those reese's pieces. not one!
in fact, they are the ONLY thing i've kept down in 4 days.

on top of that,
i quite possibly may have 4 stomachs
which makes me part bovine.

i am an extraterrestrial predictably barfalicious bovine


ET phone home
then
mooooo-ve over
because
this bovine is making a come back

THIS WEEK ON THE LYME FRONT

The Gravity Defying Week.

Overall, this week has been rough. Out of this world rough. I have been herxing. I have had a whole meteor shower of ugly symptoms rain down on me.

I have been surrounded by a gravitational force field so strong that it left me encapsulated on my couch. This force field hijacked my energy and my mind. My fatigue has been so profound that I could have stepped foot on the moon without a space suit and they still would have had to scrape me off the surface.

I even broke the cardinal rule - I missed a dose of abx. In 16 months of treatment, no matter how sick or miserable I was, I have NEVER missed a dose. Never. This week I did.

While my body has been tied to my couch by this freakishly unearthly gravitational pull, my mind has been free floating through space. I have had a million thoughts swirling through my head but my ability to reign them in long enough to cohesively form a sentence has eluded me. I've tried to write but I have just laid here, blankly staring at my screen.

My neuropathies have been out of this world on the richter scale of pain. Ever tightly squeezed an ice cube in your hand? The icy cold painful burning sensation that that produces is what my nerve pain feels like to me. Full body. No relief. No release. An incessant barrage of icy burning, tingling pain.

And then there were the drenching night sweats. Internal head pressure. Ringing ears. Swelling joints. Shortness of breath. Criss crossing eyes. Quivering kidneys, liver and collicky gallbladder. Twitching, twittering muscles and limbs. Come to think of it, I suspect these crazy body hijinx are similar to the sensations that astronauts experience upon re-enty into earth. (minus the profuse sweating - they'd drown in their space suit).

I suppose each day of treatment brings me one step closer on my journey to re-entry too.