July 27, 2011


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."
"the chicken is in the fridge on the bottom shelf."

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

"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
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
then we waited for the results
a long, nerve wracking 10 days
we weren't expecting good news
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
coupled with the barfing, fevers, head pressure, word issues i've been grappling with for the last several months, it sounded really, really bad
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
graham burst into laughter
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
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
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
so i got me hands on some (thank you to parker )
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 i
n 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
mooooo-ve over
this bovine is making a come back


Anonymous said...

Love your attitude and humor!!!! Thanks for representing this awful disease (and us) with grace, love, and class.

There's a lot I could relate to in the post...the word switching, the herx shirt, trying to make the best of a really absurd situation.

I have no doubt, if anyone can kick this thing, you will. As they say, "Don't mess with the bull, you'll get the horns."

Thanks for making me smile.



Texas Bound and Determined said...

What an amazing post about an amazing journey and your amazing courage to continue to fight Lyme disease.