April 7, 2010
LOOK AT ME
my posts of late have been fairly infrequent
i miss blogging
and it is often on my mind
with growing frequency i often mutter,
"i should blog about this"
my musings about possible posts are often followed by quips from my family,
"you never blog about me!"
one after another, they practically fall over themselves in a bid to be the center of attention
for those that know our family you will laugh out loud at that.
obviously, because you know that there are several of us who like to be the center of attention
yes, it is true.
most of us in this family are desirous of basking in the glow of the spotlight
to be exact, there are four of us who like to be in the spotlight
one of us not so much
parker, my proverbial middle child, quiet, unassuming, and low key; he totally shies away from being the center of attention
as you can imagine, being in a wheelchair is his worst nightmare
now, take his siblings, for example
they wouldn't have such a struggle with it
in fact, they would probably relish the attention it begets
avery has been known to commandeer parker's wheelchair in public
wheeling herself around
and yelling at passerbys,
"hey people, look at me! look at me!"
yes. she has really done that.
what a girl!
can't blame her, after all, it's in her genes
it's funny how "our life with lyme" rather than "my life with lyme" has hijacked the majority of my posts lately
i suppose my posts are still about me,
like how i'm nearly coming unglued on a daily basis
how my sanity these days is in serious question
but what about my fight with lyme?
after all, isn't that what this blog is supposed to be about anyway?
whatever happened to fluffy-fluffy?
the fluffster is still here
in all her bloated, puffy, boggy, saggy glory
coincidentally she misses being in the spotlight, too
even though, at times she must share (for the sake of science, of course) of the embarrassing and crazy things she endures in trying to banish her puffed up state. well, she's been pretty busy of late...i'm sure she'll show up soon to regale you all with her sordid swelling tales... but that will have to wait for another day.
because this post isn't about her
or about the kids
or about my questionable emotional stability at present
or about the medical hoola-pah-looah we must fight
or about the myriad other things that are deserving of the spotlight
this post is about me...
and where i'm at in my own fight with this stupid, insidiously awful disease
i'm back on IV rocephin. back to dancing with my iv pole 6 days a week. one day off. but that's just the start. i'm knocking back 3 malarone a day and pulsing artemisinin, 4 days on, 3 days off in order to stomp out my babesia infection. i'm hitting the lyme with biaxin, diflucan and pulsing tinidazole, 3 weeks on, 3 weeks off.
then there's the wobenzyme, still gulping down 40 of those puppies a day in order to help heal my serious inflammation issues; add to that, the daily castor oil packs, and liver detox meds and my infamous green goo, and a plethora of other adjudicative meds - too many and too boring to list. hold up though, some of them have some very interesting names; forskolin, lion's mane, mundipur, biomins...the list is an endless bevy of ludicrously named products. however, i'm grateful for the scientist or herbalist that discovered them because they are helping.
oh, and recently we learned that my bartonella infection, that is yet to be treated,has taken up residence in my lymph nodes and is wreaking havoc in my body yet my body just can't handle treating it quite yet. oh yes, i've got trouble with my liver too - not from drug side effects but rather there is a colony of parasites congregating on it...really very freakishly fascinating. had to endure injections into the scar tissue above it in order to alleviate some of the strain on it. that hurt. a lot.
before i move on, i might add, that there is lymph drainage therapy twice a week, the every other day abdominal injections, and an "unmentionable therapy" i'm about to start (and might just let fluffy-fluffy loose long enough to blog about it. one day soon. maybe.) and last but certainly not least, is my gabapentin, which may be my new wonder drug du jour, 8 of those a day help to control my full body neuropathy.
and oh yes, i'm juggling treatment protocols for both of my sons. and have i mentioned that on top of that, i'm simultaneously doing grade 5 and grade 12 because both my boys are not well enough to attend school. okay, so i'm not really doing it. i'm attempting to teach it. most days that feels like a struggle in vain.
this would probably be a good time to mention that i'm in therapy now. the shrink kind of therapy. i'm grateful for the counselling, it's helping me cope with a life that i mostly feel incapable of coping with. i'm pretty sure that my bi monthly sessions have my counselor seriously reconsidering his vocation
but in spite of all the hours that are devoted to my fight, despite the myriad pills and a schedule that is dictated by pill popping and over run with therapy appointments, doctors visits, picc line dressing changes, homeschooling and fighting a medical system that appears to be conspiring to keep me (and my sons) sick, a battle that has forced us to get help out of our own country ,
aside from all that,
i am having multiple moments on multiple days where i forget i'm sick
how that is even possible, in the midst of it all,
is simple astounding
ever so deserving of a little focused attention.
i'll say it again, i have had multiple moments on multiple days where i forget i'm sick
look at that!
look at me!
i am getting better
i can feel my body healing
that is pretty darn cool
it is more than just cool,
it is oh so divine
to not spend every hour of every day wishing for an escape hatch that i could slip through and gain freedom from a body that is riddled with pain and hemmed in by a foggy brain
so what if its true that most days, i'm an unkempt, disheveled mess cloaked in sweats and over sized tees,
that most days, i still grit my teeth in order to do the most menial of tasks
so what if most days, i am hard pressed to scrape up enough energy to climb a flight of stairs, or wash my hair, or throw a load of laundry in the washer -
there are those other days,
those blessed snippets of time where i feel pretty amazing.
those days where i have the energy to slap on some makeup, squeeze my puffy, bloated body into a pair of jeans, and slip on some ballet flats and head to the grocery store and not worry about getting lost on the way there
sure, it's not the 'pre-lyme' me, why that me even wore heels and full makeup to labor and delivery all 3 times,
sure, i might feel overdressed every time i clothe myself in anything other than sweats or change out of my pajamas to go to the drug store
look at me,
i am having days where it's not scary to live in my skin
i am having days when i can peacefully reside in my body
and where it doesn't hurt every single minute of every day
look at me,
i'm having days where i can experience life rather than merely endure it
look at me world!
look at me, my dear lyme buddies!
there is hope!
there is a light at the end of the tunnel
i can finally see it
it might be just a pinprick, a twinkling glimmer on the distant horizon
but it is there
and most importantly,
look at me, my dear sweet sons, look at me
mom is getting better
you will too