brick by brick

for all you medical naysayers, i have been lucky. very lucky.

and so i grasp to dr.dauer's words like a rope tossed over an under turned dingy in churning waters. "give cyclosporine 3 months, let's get those headaches under control, and you'll be back at work before you know it." and gratefully with his words, he whisked away my guilt under that burdensome rug; that terrible guilt...temporarily...i have never been the kind of person to sit around and do nothing.we have a laundry list of roof fixing,insulation, house financing, a dying car, medical bills, and taxes to conquer. but these migraines have allowed me to do nothing but fold laundry, sweep up, do dishes (and pick up the odd lawn sausage] and then cluster migraines collapse me on the bed, rocking unhinged. and i cry that release will elude me forever. you would think after 30 years after dealing with renal failure, i would have some level of acceptance. but as k. likes to declare, "you have have always been a fighter"; you walk into a room into  a room with your fists up"...too much has happened and i don't know that i can change for better or worse. through sickness and in health... i will do what can with what i've been doled out, but when so many, who jump out of bed and tackle the day with vim and vigor; my heart is left drawn and quartered; bleeding for the life in which i used to thrive.i have spend most of my recent life depleted of the exciting mundane and the precious, twinkling gifts we exhilarate to bathe in. so here's a 180. i went to my first aa meeting monday with a very kind, supportive new friend. it was probably one of the hardest things i have ever had to do; walking into a room, announcing myself as a pain killer addict. but i kept an open mind, and everyone couldn't have been more supportive.

but until i get off my last drug-xanax-i feel like a hypocrite:even though

i haven't had a drink since aug.15th and no painkillers for over a month.

i am still proud of myself. chronic illness is the red queen that combs the earth, searching for insidious beauty she bolts from..."OFF WITH HER HEAD!"

this is the woman i want to be: 


the woman who used to run 5 miles a day, ate like jack lalanne, drank water like the precious commodity it will soon become, and kicked pain meds for a over a year. no alcohol since aug 15, but the last pill taunting me is xanax.i want to wean off this drug and replace it with exercise, chiropractic, massage and all things healthy...but there is often legitimate pain i need to negotiate. and so i lie down, fetal; rockin' against my maggie...an icepack on my head, amanda' s heat pad on my back, tiger balm slathered across my forehead, a wet washcloth covering my eyes, and distressing that this agony may never encase this cranium again.

please. please release me.please let me live the life i loved so much.

the joy of running naked through my favorite park in the work...joshua tree...swimming, redecorating, the simple pleasure of devouring a book and the independence that has eluded me for far too long.


and then there's tennessee. the joys of vacation, great friends, cool weather, midnight trips to walmart, infinitely cool godsons, slaughtering deer, homemade warm biscuits with churned apple butter...sigh...and the dearest, dearest family...

  

my godson's 3rd pirate themed birthday was something i wouldn't have missed for the world. i am so proud of being the godmother of 3, so despite the fireball in my head (and not the kind joey played on "friends"), i dressed in my wench's best and "arrrghd" all the live long day.

                                          she's goin' to blow!


and then there was wilfred, going to town on his cupcake like a carboloading marathon runner. or in his aunt's alternate words,"he's licking that cupcake like a girl"

                                             wilfred III

                                             captain wil

                                             first mate mcintyre

                                             wee wench


notice the "smize", notice the booty tooch, notice the full body pose...


[or as tyra like to egotistically pronounce "pose from "h to t".]

it's hard for me to embrace the mantra:"happiness is what you've got, not what you want" .i fixate over this frustratingly like the rubik cube i was never able to master. 


[yes, i'm an 80's chick.]


how can this apply to the chronically, compromised ill?. for all we've got is pain and sickness and agony. and all we want is health and strength and vigor.

denmark, norway, sweden, toronto, winnipeg, palm springs, jamaica, las vegas, hawaii, paris, arizona, dominican republic, mexico city and london. these are the myriad of destinations we've traveled together that we whisper in our drowsy, hopeful slumber.

kevin told me not to post this photo. "you don't look model thin, you look sick thin." when i realized people were staring at me, i hoped it was the gorgeous slip of a dress i was wearing. then i realized it was my filthy hair tucked under my newly purchased vis a vis john taylor fedora i was wearing; in the hopes of hiding my filthy, crazed flop of strings.but finally i had to concede it was my shockingly underweight frame drawing stares of shock and envy.

but, the former nine images are reminders of joy; they sparkle like rebel diamonds desperate to shine within the palm of my hands ...but they are imperfect; and so am i. with no energy to polish, buff and gloss these beauties into perfection. not yet. for i am deeply flawed.

[for me, they are not yet cut out of the sun..."can you read my mind?"]


good health seems like a life time ago, back when i was 13.....now at 42 i am  simply fed up with 30 years of chronic illness. i can't even count my hospital visits anymore. it's also kind of peculiar when i approach the pharmacy from 50 feet away and they immediately reach up for the "I" section. or when i call dr. dauer's office and delaina immediately recognizes my name.  


these folk have become my friends, my allies and companions and it's more than a curious way to live.

it's not the trials that make the woman, but how you handle them that defines your character.


[the other verdict is still out on that one]

my favorite place in the world: joshua tree national park. deafening silence. prickly, twisted, warped, thorny sculptures. stark in their beauty. magical in their uniqueness. have you ever listened to the U2 album while puttering through? sublime. how could i not run naked and celebrate such a gift of nature? this beats the granite hills of ontario, canada any day of the week.

[sorry, canucks.]


oh, ladies.

anorexic, bulimic, body dysmorphia only traps you into a painful; desperate unconquerable cycle. pity the child who sees beauty in this dysmorphic botticelli. all i see is a desperate woman longing to be pardoned from this prison of pain.

there have been blessed reprieves. saturday was the celebration of a new friend who has gone and above for me with my addition issues. even my therapist agrees i need a sponsor. nope. i can't believe i am here. but i want to be.

who wants to looks like this? no appetite? no energy? henceforth, no life.

i have always wondered if i gave my first kidney transplant a bad name? for 20 years, i was strong, fit, rarely sick and often inhaled red velvet cupcakes like charlie sheen inhales 7 gs...mmm...

yesterday, i saw a report on 22 million american woman who suffer from migraine headaches. this woman had it bad. really bad. she went on 44(!) different medications for 15 years, lost her job, and then finally had a european approved wire implant inserted into her head. this are the anecdotes that paralyze.

hers are better now, less frequent, less painful; but these news stories do nothing but make you curl up into a sea of calgon and rock until "raindrops and roses and whiskers and kittens"  soothe away the fear.


there has been much discussion about steve jobs recently. that has admittedly flown like a low flying 747 over my head. i've always been a list-maker with the old school flip phone that takes me just under an hour to text a message. sure i dig my ipod. music is my groove, baby. but IPHONES, IPADS, ITOUCHS, INANOOS...only contributes to a world of heads bend over dinner tables, distracted conversations, and obsessive face booking. 


[who really wants to know what you are having for dinner? and a photo, too?. really?]


and so, for the most part i refrain.


when at cedars last friday, there was nary a mortal not crazy glued to their electronic nirvana. even the yarmulke adorned physicians were poking away at their compact canisters clutched firmly within their million dollar digits.


and i wondered.


has society has lost all patience? we need to know anything and everything right away. from kim kardashian to amanda knox to californian home foreclosures to the the michael jackson death trial. it's inescapable.


but for the chronically ill, we must cultivate patience. we must find that quality that we never thought existed within ourselves.

i hear that clock ticking. every day. at age 42 it is subtle, quiet, much like the tinnitus i still suffer from. i worry about my heart, my liver, my kidney, my entire orgy of organs. for 30 years toxic medications have been frenetically metabolizing; having the time of their lives. it has always been a balance between what will preserve the kidney and what will prevent me from becoming a lunatic with all the legitimate biochemical alterations....


[again, the verdict is still out on that one.]


so, yes, steve jobs changed the world in terms of how we communicate, but when i crack open my metallic, silver envelope, i actually sing praise to mark zuckerman. yes, jobs built my MAC, but facebook has connected me with family in israel, boston, canada, denmark, australia, england and the states. now that's technology i can get behind.


[now if i could only get rid of these headaches so i could tackle the 233 messages in my inbox.]


but steve jobs did leave something behind that touched me. and touched someone else as well.


in our increasingly frustrating attempts to refinance our home; [help for the delinquent, no help for the responsible], we met a lovely woman named elisa, at bank of america, who was immediately taken by us; particularly by my kidney transplant. and within seconds of grasping this information she began ranting about steve jobs. "sure. he was successful. he had everything. but what good was it without his health?"


[instantly i had a soul mate. despite the blinding glare of her ring, and the tailored fit of her upscale suit, she was sincere.]


she continued:"i don't care. take everything away from me. just give me my health". this grade A woman, working for THE ESTABLISHMENT, by default our legitimate financial enemy, had suddenly become an ally. sometimes life throws you a bone just when you can't gnaw on crap anymore.


[and a crazy grin spread from ear to ear.]


i would like to believe this was the reason steve jobs got so much attention when he died. pancreatic cancer has a 5% survival rate; and his horrific death at the age 56 blew people's minds. but i know that's not the reason. but for me, it always will be.


and so on the third day of this blog, i release my deepest confession.


tonight i am in cedars-sinai again. my kidney is fine. my creatinine was 1.0, which is amazing. i am here because i overdosed on a bottle of xanax. the last mood alerter i had access too; being cut off completely from pain killers, i lost all control in my desperation to be pain free. i also stole pain killers from my husband and replaced them with prednisone.


[so. whad'ya think of me now? i bet it's nothing compared to what i feel like.]


deformed, regretful, heartbroken, devastated and disgraced. an alien floating in a friendless vacuum.

our last three years have been a litmus test of how much kevin can take. and i know he's pretty much at defcon 5. and now i'm sure i can't do it on my own.


even our beverly hills therapist, a lovely zen, santa claus type who only charges a c note, actually stopped our conversation to validate how much shit we've had to muddle through, and that it was amazing that we were still together. it was by turns, comforting, confusing and chilling. believe what you will. the last thing i ever wanted to do was hurt kevin. but when you are in pain and an addict, it becomes the number one relationship in your life.

there have been moments of joy, but the last 18 months have been crammed with 2 overdoses, multiple hospital visits, my renal failure, dialysis, pre-transplantation meetings and tests, the transplant, post-transplant recovery, medical bills, rejection, 2 months of the immunosuppressive prograf (antigraf!) and oxycontin, kevin's ulcer, a 20 pound weight loss and headaches/migraines that have cemented my life with an immoveable road block.


[i won't even get into the economic crash and its' repercussions.]


i don't know what happens after i leave cedars. currently i am detoxing, curiously not really wondering how i got here. i never meant to hurt anyone. i never grasped the depth of my desperation until migraines began to rule my life, and when that became my one and only focus, i became angry at how much life i was missing. months and months being housebound. unable to read or write or drive. unable to live.


my psychiatrist today asked me if i wanted to kill myself. and i said no. but truthfully, there have been moments where the pain was so great, that it was all i could do not to smash my head against a wall. and sometimes i would hope i would wake up heath ledger style...just so that i wouldn't have to face another day of pain.


but do i want to die? no.


i feel trapped in a magic box. you know the kind. where the tiny assistant is mangled into disfigured positions while the smarmy magician wiggles and waves around the cube; finally inserting a variety of knives into the slots. in reality we all know the assistant has been contorted into unthinkable positions...much like my own challenges.


on the outside, my edema-less, slight, tanned frame belies inner entanglement. i live with aching, cramped limbs, attempting to unfold one  twinging appendage at a time; then wobbling my way back up to standing position...ah...so where do i start?


 i don't recognize this birthday girl.

and i don't recognize this makeup girl, and i don't recognize this athlete.

in fact, there's nothing about my life i recognize anymore.

i am always in pain.

i am a drug addict.


i steal pills.


and i need help.


so after i am i am done "detoxing" here, i will probably go to rehab for up to 90 days.


i am terrified. terrified of being alone. terrified of being labeled "an addict". terrified of losing my friends. but more than anything, i am terrified of losing my husband. my kevin. the man who has stuck with me through so much. too much. and never strayed. never left.


but there is fear and tension and heartbreak in our cabin in the sky, and there lies nothing higher on my agenda than to gain back his trust.


perhaps trust is a more precious commodity than love, for without it, your relationship is shattered. love doesn't conquer all. it just makes you feel all warm and fuzzy inside. but trust. trust continues to lay bricks for the foundation of your relationship, whereas love just thinks they're kinda pretty.

there's a new house i want to build together with him, brick by brick by brick; solid and clean. 


and maybe just a little bit pretty.

[thank you, my love]