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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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.

ideally.

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.

[OW.]

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.

6 comments:

  1. you write brilliantly, i just had a 'moment' reading this post. you have endured so much, this last wait before surgery must feel so long and time passing slowly. like the last mile of a marathon, legs gone, head gone, just the will to cross the line keeping you going. the line is getting ever closer, keep strong, big love from across the pond xxx

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  2. Loving you both from afar.
    Wishing we were closer in distance but proud that we are as close as we are in our hearts.
    Soon, this will all be the past... instead of the now!
    When you are on the other side, we will be there cheering and filled with joy, happiness, and of course LOVE

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  3. Come on April 8th!!!! Thinking good thoughts for you H.

    Candles are lit!

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  4. Anne Marie DeLuiseMarch 28, 2011 at 4:42 PM

    Stay FEROCIOUS!!!
    Xxxooo AM

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  5. <3 and god speed to the both of you! your writing is as beautyful as you are! I will be celibrating on april 9th and raise a glass to the both of yous!
    joanne mcmahon

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  6. I hope you recovered.

    Stay strong.

    Shawn

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