March 19, 2011
SOMEWHERE IN THE MIDDLE
i am somewhere in the middle.
my brain somewhere in no man's land.
that is the great nugget of wisdom coming from DR H when i spoke to him via phone earlier this week. it's only been 4 weeks since we saw him in office in SF. but pretty much all hell has broken loose since our return. and most of that in my brain. naturally, hindsight is 20/20, and now i can see how the downward spiral began already while we were still in SF.
i kept blaming the internal head pressure and increasing sensitivity to noise on that sinus/ear infection i came down with in the days before our trip. it wasn't completely illogical to think that. and the migraine i got our 3rd day in SF, well, i just chalked that up to just being run down, nutritionally deficient and the stress of travel etc. etc. etc. but...
even tho' we were away, i couldn't relax. even though, i was tired, i couldn't sit still. even though i was exhausted, i couldn't sleep (even with sleeping pills). even tho' we were away, i was just super agitated and felt "over caffeinated". every day. all day long. i spent a lot of time pacing around our hotel room.
all of that should have made me sit up and take notice.
and when the sound of the drapes being opened in the hotel room beside us jarred me awake and made me jump. well, THAT should have been the red flag that more than just a bad cold was the issue.
but i didn't clue in
i didn't WANT to clue in
i am just so super sick of being sick and tired that i figured maybe if i just ignored it, it would all go away
and if i just soldiered on, i could push through it
after all, it was "only" a cold
so i kept going and ignoring and trying to 'behave' myself well
and over the past 4 weeks everything just got increasingly worse
the noise and head stuff became increasingly difficult to ignore
in order to "function" i had to wear earplugs
i didn't really 'think' about it
it's just what i had to do to get by
i just kept rationalizing it all away as the cold that just wouldn't let up
it's weird how the abnormal can become normal
i was startling easily
i was exhausted
i was running a steady low grade fever
i felt like my head would implode
i even with ear plugs in i was cringing at every little sound
i felt jacked up and over caffeinated
i had tremors and twitches
i'm super over emotional
hey, i'm just over tired and it's just a bad cold, right?
so i just pushed through it
i HAD to soldier thru
there were teacher conferences to go to
doctor appointments to go to
prescriptions to fill
my body revolted
my brain melted down
2 weeks ago, all hell broke loose
i started vomiting uncontrollably
not flu barfing but "my kind" of barfing;
that seizure kind of barfing
it got so bad and i got so weak that all i could do was lie there and barf on the floor
i could not be touched
i could not be moved
graham was in the bathroom with me, making phone calls to DR H's cell and trying to make arrangements for someone to come and take care of avery and i kept barfing and crying and then that crazy, jacked-up, over-caffeinated feeling i've been living with for the past 4 weeks unleashed as a full on blown out panic and anxiety attack
i TOTALLY FREAKED OUT
my brain went into sensory overload
i started having flashbacks of all the other times i have been this sick
i also became consumed by the thought that if avery left the house, she would die. i was convinced of that.
it was horrific
hello, PTSD and herxing all rolled into one
so. uh. yeah.
i was a pretty big, hysterical, sobbing, barfing mess
i was in so much physical pain that i couldn't handle even the thought of being moved and so i lay on the bathroom floor for 3 hours before i managed to crawl the 6 feet to my bed
that is pretty much the condition i remained in for the following 5 days
in bed, locked away from the world, ear plugs in, sound a deafening and excruciating beast to endure, the simplest, most inconsequential type of noises;
like ice cubes in a glass,
pages turning in a book,
a bird chirping outside my window,
all of it sending shock waves of electric-like torrents of pins and needles rippling over my body, their reverberations echoing thru my head, triggering a kind of infantile startle reflex and pain, pain, pain
and panic and anxiety attacks coming in near non-stop swells, spiked fevers, swollen, tender lymph nodes, diarrhea, barfing, tremors,twitching, visual disturbances, and atypical partial seizures.
evidently, things have gotten a bit better over the past couple of days
that just made me laugh
it's so extraordinary to write about losing my mind in one sentence and then so casually lead forth with such a casual, non-nonchalant, "evidently, things are better now."
i probably am truly mad
i'm still snickering
mad or not, i'm able to finally ramble on about all of this
string thoughts into cohesive sentences (at least, i think am)
altho' i've noticed i keep misspelling "diarrhea"
for all the talk about it, you'd think i wouldn't have to keep having to spell check it
so, for now, for today, for right this moment (and yes, finally i'm not blogging in past tense but this very present moment!) the intensity of my symptoms have finally let up. i still have diarrhea, fevers, tremors, twitches, arrhythmia, and for the most part, am residing in bed with ear plugs on, but if i don't move too much or sit up for too long, i actually feel okay. ha ha. it's been pretty awful and it isn't great but it is better than it was.
last week, when i was at my worst, i feared i had gone totally bonkers
i saw those news clips of charlie sheen's televised rants and all i thought is
"wow. charlie sheen is my brain personified."
and i'm not poking fun at him or whatever is going on with him. i just have felt that freaking crazy.
i have been more or less bed bound for the past 13 days now. the first 5 of which i couldn't have gotten out of bed even if my pants were on fire but after that - well, i have managed (with graham's help) to white knuckle it to a couple trauma therapy appointments.
am i really in any condition to go?
i'm not really "well enough" to go
i'm also not "well enough" to NOT go
you catch my drift?
and the thing is, it HELPS
at least it helps with the PTSD part of me
i am incredibly grateful for this God-given therapist and OEI therapy (more about that another day)
so long as it helps, i'll go
desperation has it's place
i'll do whatever it takes
we've spoken with DR H several times
earlier this week, both graham and i had a long chat with him
trying to make a plan of attack
DR H is pretty insistent that we somehow find or hire extra help
as far as my blown up brain goes?
the problem with that is two-fold:
one part active infection;one part toxic overload
both in the hypothalamus area of my brain. the hypothalamus is the brain's command central and regulates pretty much everything. obviously, having that area of the brain infected and toxic creates havoc through out the CNS and ANS and that is triggering atypical seizures and is why i am one big jangled up mess of crazy neuro symptoms
he explained it all
i retained only bits and pieces of his explanation
simply put, there is a war going on in the hypothalamus region of my brain
the active infection part HAS to be addressed but at the same time, hitting it too hard creates a toxic environment in my head
finding the delicate balance between the two is the fine line we are walking right now
as DR H put it,
we are treading in the no man's land of a war zone right now
for the time being,
he has started me on the IV abx rocephin and 200mg oral mino
we have increased the dosage of one of the anti-seizure meds i am on
i have to text an update of my condition to DR H every day
on monday, we will be heading down to seattle to see our doctor there
then we'll go from there
i don't know where that will be or what that will be
for now, i'll soldier on somewhere in the middle