About Me

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Los Angeles, California
I am 47 and thriving in Southern California. One day at a time.
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Tuesday, March 29, 2011

27 minutes of bliss

"omg...where are you going? can i come with you?"
"but i love you..."
the long and winding road.
west sunland...mountain mama...
silver succulent.
desert rose.
one tree hill.
burnt bush.
mellow yellow.
the 210 and heaven.
happy kid.
the great beyond.
buxom blossom.
fence of white picket.
of hill and dale.
don't fence me in...
step by step.
gone postal.
stairway to kevin.
suburban sprawl.
home is where the lemon is....




Monday, March 28, 2011

tie me up, don't tie me down...

so bette davis is out and betty ford is in.

our transplant has been moved from april 5th to april 8th.

three more days. but when you live a minute to minute existence in a physical prison, there is no silver lining.

if one more person spouts, "well, it's still soon! at least you have a date! hang in there!", ass kicking of the immediate kind will ensue.

[sorry, folks. nails on a chalkboard.]

live one day with a hole in your chest the size of a half dollar. mildly infected, the tube that hangs from it, that shoots up into my collar bone, throbs and pangs throughout the day. live one day with the diet of an ethiopian. no showers, just sponge baths. and on the days of dialysis, electrical shocks constantly shoot through your heart. an all consuming buzzing that substantially dissipates after 24 hours, but never quite diminishes its voltage.

a body in conflict.

saturday, my blood pressure shot up to a diastolic (the lower number) of 121 (120/68 is excellent) and my machine flew into screeching, blood red alert mode. with a pulse of 145, i was ordered to sit, instructed to breathe in and out, slowly and deeply, and an oxygen mask was fitted, keeping me prisoner for over 15 minutes.

[i'm nothing if not dramatic.]

my fluctuating blood pressure rivals the most extreme coaster magic mountain has to offer.

[hi, i'm a walking stroke.]

nope, 3% girl does not respond well to dialysis.

my inaugural dialysis shocked my body into complete withdrawal. and honey, i've been there. plummeting blood pressure, body noodle-limp, head swimming in an udon broth, and weak, desperate, bedside calls..."kevin, help me". too scared to sleep, with a night of aching limbs, sputtering heart and frantically spinning brain; i was up until 9 am until my assaulted frame collapsed into 2 and a half hours of blissful REM.

[stop the world, i want to get off...]

this is better?

so with an adorable vulnerability, dr. dauer pulled uberhubby aside on thursday and confided, "do you think we did the right thing?"

ideally, dialysis removes fluid from your tissues. controls your blood pressure and stabilizes your potassium, phosphorous, hemoglobin, etc...so that you will be stronger for surgery.


i cry every day. not long. and not hysterically. but the psychological madness of realizing you are alive because of a machine can overwhelm even the strongest of us.

...am i a bad person? why am i the 3% girl that always endures the most obscure reaction/side effect? and why, WHY have i lost so much of my life to illness...?

but then, apres the droplets of release, my tensions are met. i breathe in and out, and i look for something. anything. that can diffuse this hell.

if i had the choice, i would rip this tube from my chest and sprint away from the dialysis ward faster than charlie sheen can snort up 7 gs...i would go back to bedridden nausea with a heated pillow permanently molded to my intestines.

[1968. the year of the monkey. the year of my birth. "shock the monkey", indeed.]

tuesday, thursday, saturday, tuesday, thursday, saturday...it's a lifestyle. and the best thing i can say about that is i get a 2 day break between saturday and tuesday. but, it's a lifestyle that i must embrace. i must endure. there is nothing else but this sizzling through my brain...

the ward is a ridiculous siberian cold. a brief glance around reveals lifeless mounds shivering under blankets, as their blood is sucked and pumped for up to 4 and a half hours a day. i surf the 3 hour wave, but when my veins are sucked raw and that open wound fidgets, throbs and pings; my hand shoots up to protectively clutch, and my eyes fill with tears.


tears for the known and the unknown.

april 8th will bring surgical hope, but no future guarantee. sometimes i think i have done the issue a disservice by representing kidney transplants so well. the healthy, active woman i was is no longer, and only existed because of a great match, toxic medications, exercise and excellent eating habits. (oh, and a wee bit o' luck.) this will never be over. i will always frequent the doctor. i will always be on meds. i will always be imunosuppressed. i will always get 5 week flus....i will always be afraid of rejection.

tell me. how do you live in the moment when each moment is saturated in fear?

friday, kevin and i went out for the first time in weeks. i haven't driven since november. haven't seen my friends since christmas. and the most i can walk is from the car to the dialysis ward...a life of isolation stripped of joy.

but, as our car careened over bumps, slicing figurative knives through my chest; the city lights and fumes and noise were by turns unbearable, yet exhilarating. i was living! and as we sat and chatted over a few pieces of sushi, i raised a glass and toasted to this brief moment of freedom. and then i looked at him. i mean, really looked at this man who is giving me a kidney. this man who wants to save my life...

and then i realized, he already has...
this man protects me like his child, defends me like his princess and respects me completely despite my utter dependence on him. oh, and he makes me laugh harder and longer than a sloppy, drunk girl on a friday night...

[my kevin.]

so maybe it's perfectly prophetic that our new transplant date will be a different betty's birthday. the groundbreaking betty ford. for, truly, i am just a wannabe movie star. but i am definitely an addict, a groundbreaker and ferociously determined to live a healthy life again.

trust me, there is no fight more worthwhile.

Wednesday, March 16, 2011

the kid stays in the picture

she gives good veins.

"waiting on a friend"...
the kid.
wrong finger.
wave to the folks at home.
20 days (a.k.a. my husband is cooler than your husband).
"living well is the best revenge"...

Sunday, March 13, 2011

D-DAY (dialyze her? i don't even know her!)

sometimes people just need to spit it out.

whenever i visit my toronto physician, my meeting is always preceded by a grilling from THE INTERN; the well meaning newbie, with the bedside manner of an atm machine. to be fair, how does one summarize nearly 30 years of renal failure into a 5 minute sound bite? still, there was a particular incident of couple of years ago, when i wanted to shake, rattle and roll this woman into reality.

as she droned on and on about my current medications and fluctuating numbers, she softly began to mumble about my potential options. options? from my understanding, with renal failure there are 3: dialysis, transplantation and death.


but this chippie rolled tongue about a potentially exotic experience entitled "renal replacement therapy". well, if that didn't sound just delightful! as i made suspicious eye contact with my southern soul sister, k, my ears perked and uncorked...

visions of sugar daddies danced in my head. men half clad in egyptian cotton toga diapers; soothing muzak tinkling in time to the flap of their enormous...um...palm leaves...as their taut, well-oiled physiques tended to my every need.

"renal replacement therapy? i'm SO there!"

but, of course, she was taking me on a joy ride through spin city. oh, honey, this ain't my first rodeo...

"you mean dialysis?"

"uh, yeah."

"oh, for f@*k's sake..."

[that was in my head]

behold the valiant effort i have been making to be optimistic. celebrating at every turn, my rapidly diminishing list of blessings (oooh! i found some lemons in the street! oooh! my bedroom has a window!) and my funny bone, that despite osteopenia, remains intact.

[i'm in rare form tonight so you might want to duck for cover]

last night i marauded another level of my subconscious (yeah, i've seen "inception" twice). night terror screaming, followed by k's frantic pulling of my toe (!?), as he flew off the living room couch, where he has has temporarily taken up residence. "are you ok? are you ok?".

[how do you compromise my stone cold, toxic veins and his need to sleep someplace other than a steam room?]


as we spooned, and i spilled, detailing the toronto earthquake i'd endured, and the crazy, drunk man cackling up geoffrey st., k. offered, "well, now that you tell me, it doesn't seem that bad..."

ah. and there's the rub.

the truth is, no-one can truly understand.

my discomfort mutates. it fluctuates between intolerable, occasionally agonizing, with the odd, blissful downgrade to just plain awful.

recently prescribed "tigan" (trimethobenzamide) for post-surgical nausea, we were hoping it would take the edge off. hey, as a former (?) drug addict, i figured anything with the word "meth" in it could potentially be fabulous, but it turns out to be as effective as a car wash in a rainstorm.

minimal impact.

i'm pounding back a daily molotov cocktail: benzodiazpines infused with antiemetics.

tigan: for nausea
xanax: for tremors
xanaflex: for headaches
ambien: for sleep

[talk about combustible]

prescription # 22 might ignite the fuse on my civil grenade.

[friendly fire?]

in bedridden throes, i crave numbness, dozing, napping or sleep. any respite of the unconscious kind. in the mornings, (well, technically afternoons), i curl fetal; reluctant to emerge into a world of symptoms and side effects. the frequency of moments where i want to scream until hoarse, cry until parched and punch until (someone is) bruised is increasing faster than oprah's waistline.

we spend a lifetime spearheading the pursuit of Being In The Moment. it's a meltdown of the 21st century variety when you realize every second of your day, is focused on wiping the days away, like dust on a computer screen, so you can potentially refresh, restart and reboot.

[and there's no discounting the viruses still out there]

i never thought i would ever say this.

i want dialysis.

shaking in my boots so hard, i could give that 8.9 a run for its money...(too soon?)

so, if your sweet self has never been hit with anything harder than a "brutal cold" or "chronic bronchitis", you need to --respect the extolled expletives of ben stiller in "meet the parents" and--

"shut your pie hole."

i am not stripping anyone of the agony they have endured witnessing the suffering of a loved one. i have friends, dear friends, who have loved and lost, who have stepped up beyond all comprehension and endured hearts cracked deeper than the san andreas fault. i lost my own father to chronic illness. but, there's a different kind of pain reserved for those emotionally attached, but physically untethered.

you can always walk away.

[no, i didn't get out of the wrong side of the bed today. i didn't get out of bed at all.]

you can drive. so i hate you.
you can exercise. so i hate you.
you can work. so i hate you.
you can volunteer. so i hate you.
and you can dance. so i hate you.

when i'm all riled up, riding my emotional snowball with the ferocity of a tsunami (still too soon?), it's a certified whiteout. scanning upwards into a blanched, winter sky; anticipating the fluttering flecks of white, i'm already disappointed. the snowflake on my tongue melts too fast to truly appreciate it's uniqueness.

[blinded by the light]

there's no way to win in my world.

if you say something, it's wrong. and if you don't say anything, it's still wrong.

look, there's no question that i've been officially blown away by the support of so much from so many; while other friendships have evaporated faster than the japanese shore line. (i know. really too soon).

i always wonder about the old, the weak, the infirm whenever mother earth strikes with catastrophe. they are the ones that contribute to the morbidly inflated death tolls we cluck our tongues over. and that makes me sad.

very sad.

i'm clear, very clear, that not too long ago, i probably wouldn't be here.

[survival of the fittest. she's a bitch.]

i'm mad. not angry. not pissed. just dragon-fire breathing, mind-over-matter-hot-coal walking, flame-thrower-swallowing MAD.

because i don't know where to live.

it's pointless to live in the past. my present is intolerable. and my future beckons me with major surgery, potential rejection, toxic new medications and a life of uncertain health.


[meaningful pause]

i guess i'll stay grateful for those lemons.

and i guess i'll stay grateful for my window.

so like the troops who stormed normandy in '44, and the brave people helping the suffering japanese, i'll march forward towards my own d-day; and soldier on.

"tell your heart that the fear of suffering is worse than the suffering itself. and no heart has suffered when it goes in search of it's dream".

-paulo coelho ("the alchemist")

[that's a toughie, paulo]

march 14, 2011: dialysis revisited.

Thursday, March 10, 2011

she's got bette davis eyes

april 5th.

of course, like any self respecting technophiles, we immediately googled the date.

bette davis' birthday.

a self-professed rejector of lame-ass platitudes like "everything happens for a reason!", "it's meant to be!", and "that's a sign!"; i was reluctantly excited...

"all about eve" (1950) sits solidly atop my list of all time fave flicks. the acting; pure brilliance, the costumes; perfection and the script; sublime. lending ear to its musicality is akin to being serenaded by yo yo ma on the cello, while pavarotti coos from the great beyond. a linguistic symphony that slays me every time.

april 5th.

christmas comes early this year. but for me, a mere tolerator of christmas, it's always conditional. picture it: a giant, shiny red box; silver bow perched atop; under a glittering christmas tree. with one, clean rip, a kidney is revealed; batteries included and a picture perfect mirage complete. but april is not christmas time. and mirages evaporate as quickly as a child's interest in their new toys. and inevitably, you are left with mounds of crumpled paper, discarded ribbon and pine needles scattered wildly throughout the once aesthetically pleasing portrait.

[what a f@*#ing mess!]

anything worthwhile is borne of hard work, and anything that lands in your lap should raise suspicion...(are you listening charlie sheen?)

so now i have to fight.

april 5th is in 25 days. 600 hours. 36,000 minutes. or 2,160,000 seconds away.

[but who's counting?]

and in the meantime, i must do a little dance called dialysis...

back in the days of my youth, vigor and the ability to consume entire pints of haagen dazs in a single bound, i worked on a canadian tv series called "liberty street". how fab was our makeup artist, s.? with a judgmental tilt of his head, and scrutinizing arch of his brow he actually had the nerve to broach the subject of my unibrow.

i was in love.

[hey, it's hard to reject the hairy, bohemian, viking legacy i've been born into. all the plucking and sucking, tanning and bleaching, injecting and dyeing...it just ain't my bag, baby...]

but, he was on a mission. and after a painful odyssey through tweezerdom ("this one's paying rent!"), his masterpiece was complete. and with a artist's eye, he preened and squinted only to pronounce me like a "young bette davis"...

look, i know i'm no hollywood star, nor do i even vaguely resemble one. but, when i look into her eyes, i'm reminded of the glamor of a healthy life, unabashed ambition, relentless energy and the beauty of someone riding their passion full steed.

but, i'm also reminded of all my deprivation and simultaneously ache for the day it might all return.

i miss good food. i miss running. i miss my husband. i miss my friends. i miss traveling. and i miss dancing.

[god, i miss dancing.]

music is my biggest turn on. it unleashes me from this physical prison and i can fly unchained. spinning memories of empowerment, as the bass thumps in time with my toxic bloodstream. emotive, transportive. when i fall, (the killers, arcade fire, radiohead, kasabian, white lies) the blush of new love is hard core, and it takes me places i can't go anymore.

[i'm pretty sure there's no dance floor in the cedars' dialysis unit.]

it's a funny thing, coming face to face with your greatest fear. i thought finding a baby tarantula in my kitchen sink was bad. but, dialysis...


my magical friend, m. and i, caught b-flo (that's brandon flowers to you wannabes) at the beautiful wiltern theatre in l.a. a few months ago. he nailed an amazing cover of "bette davis eyes"; and of course, in my heart-pounding, crush-fogged, intoxicated state (or was that vodka intoxicated state?), it felt like a personal serenade. look, i still have half a brain, and i know that wasn't the case; but how thrilling is that quiver; that drench of emotion when a song cuts you to the core?

you either get it, or you don't. and i do.

"she'll turn the music on you
you won't have to think twice,
she's pure as new york snow
she's got bette davis eyes"...

i want me back. so it looks like i have a choice.

dialysis or bust.

but bust is not a word in my vocabulary.

[nor, apparently, is it a part of my anatomy...]

creatinine: 5.3 (0.5-1.4)
CO2: 14 (35-45)
phosphorus: 6.5 (2.4-4.1)
potassium: 5.0 (3.5-5.0)

[please. come, hold my hand.]

"fasten your seatbelts...it's going to be a bumpy night!"

Tuesday, March 8, 2011

you oughta be in pictures

be mine, sweet kidney. be mine.

is that a kidney in your pocket, or are you just happy to see me?

ooooh, hot kidney...(amanda, your pillow is saving my life!)

a match made in heaven...

bored is the new black.

bet you want some of this!...

peace out..holla..where u at?..fo shizzle..tru dat..ya know what i'm sayin'?..DAWG!

houston, we have a problem...

you're too sexy for that purse...

but, take your time. no rush.

yup, nothing says "walking on sunshine" like a hospital room...

oh, so THIS where all our money's going...

prescription #22

just like vegas, but without all the booze, slots, (the) killers and...oh, yeah...fun.

hmmmm. no pulse. does this mean i'm dead?


yup. this is what old, married couples do for fun.

k. does "martin crane" (frasier). it's official. we've lost it...

join us, won't you?

p.s. happy birthday, daddy. i still miss you.