What a difference a year makes...

Not quite the title of Dinah Washington's ballad, but you get the drift...

As I look back to the chaos that was February at Cedars-Sinai, I feel compelled to track the journey of 2008.

Last November I reveled in the bliss of my 1.4 result. (Normal creatinine 0.5-1.4). Mine of last week was 2.9. As I've mentioned before, when I hit 3.5, I will be placed on a national donor list.

It still seems oh, so, surreal to me.

I suffer from headaches/migraines, no doubt due to the ever-constant increase in my toxic meds. My blood pressure has skyrocketed; the biggest sign that my kidney function is compromised. I feel exhausted, tired, and wiped out. Is this a result of my meds, or because of the loss of kidney function? Regardless, it saddens me.

I no longer focus on my acting career. I don't have the energy or drive and that, well, breaks my heart. I did have 4 makeup jobs this week. Validation was mine! Everyone needs to feel that they are exceptional at something, and my heart soared with this work. I love making clients feel gorgeous, sexy, complete.

Last year I was running 5 mi. a day. Now I'm grateful for 2 mi.

I miss feeling strong, invincible and fit. Oh, how folks take their health for granted. I think about my body and it's inadequacy every day. They get up every day with a jump in their step and embrace the day with vigor. Maybe not everyone; but most. And that's OK. I wish all of that and more for my friends...I just miss it for myself...

My greatest fear is dialysis.

When I was 19, it consumed my life. I am already living a fraction of what I used to relish. I am terrified to visit Cedars 3 times a week. It will obliterate the rest of my life. It will take up most of my time and that pisses me off...

But maybe, maybe, I won't ever have to go on dialysis...Maybe I will find a match before I get too sick. There is always hope, and I still cling to it madly...

And so, I try and live in the moment. Kevin and I have been tested greatly recently, but we are still blessed. Life is short, and despite weakness and pain, I have much to be grateful for.

I am loved, admired and respected and that has been the biggest blessing of all.

Shadowplay

Celebrating Thanksgiving is so common, dude...predictable and unoriginal. But I suspect I own these qualities more than I would care to admit...

I have been feeling badly about gushing over S.'s spectacular offer, and my omission over everyone else's offers to be tested...I saw a film recently ("An Unmarried Woman") in which the lead's therapist held issue about her feeling guilty. She labeled it a man made emotion. I have been pondering this greatly. Although I believe in the power of honesty and emotion...could this theory hold water? True, guilt brings us much stress, but maybe it allows us perspective and thus, introspection...

Things have shifted recently. I am feeling so tired. Exhausted, really. Kevin and I had a dinner party for 4 (well, 5 including their newborn!) the other night. Around 10:30 pm, I had a moment where I felt the wind kicked out of me and all I wanted to do was lie down. They stayed until 12:30 am, but I'm so glad they did. I hate missing out on things. I hate living a fraction of my life, and this made me feel normal, despite my apathy...

My blood pressure has spiked to a terrible level. It's very, very high now. Not only is this bad when you are healthy, it's the biggest and worst sign of loss of kidney function. I've had a cold since Kevin, I, et al. got back from Vegas a month ago. Maybe this sounds benign to you, but it has interfered with everything. I just haven't been able to kick it, what with my drug-laden immune system. Daily headaches, sinus pain and congestion. Very frustrating. Not to mention the black stuff I vomited up a while back. Despite all my medical history, that scared even me. Was it triggered by the recent increase in my meds? Who knows.

Things, they are a changing...

But it's Thanksgiving, and there is always much to celebrate.

I want the friends whom have come forth to be tested to know how often I think of them. How much I admire them. How their gift keeps me sane, strong and grounded every day. I never take what they have offered for granted. I am amazed by them all...

And so on this American Thanksgiving, I MUST hold gratitude in my heart, despite everything. There is always something to celebrate. I may not currently hold a job, I may be estranged from family and I may have compromised health, but boy, am I blessed. My friends (and Kevin) have surprised and humbled me with their support. They do not judge me. They do nothing but send me letters of love that infuse me with strength. I wonder if they know how much their contact helps me? I believe our "messiness" (as my friend H. articulated so eloquently) equalizes us all. It connects us and deepens our existing bonds. We respond to insecurities. We all have them. And if we are ready to look them squarely in the eye, someone else's vulnerability can bring comfort.

I hope on some small level I have offered that.

True, not everyone likes the mirror I hold up for reflection, but those that have responded are the ones I hold in my heart...

So as I close, I want to quote the new Killers album, "Day and Age". Yes, I might be a geek about them, but music fuels my soul and gives me hope...And I am grateful for it...

And so, from "This is Your Life".

"Wait for something better, no-one behind you, watching your shadows, this feeling won't go"...("you've got to be stronger than the story, don't let it blind you, rivers or shadow, this feeling won't go"...)

Maybe I'm Amazed...

I need to gush about an amazing new friend S. She is someone I went to high school with, although I can barely picture her face. She really was my brother's friend... But her loving heart has touched me deeply. She is just simply kind.

S. read about my situation and soon came forth with an offer to be tested, and so did her Mom (although she is not a match). What an offer from a true stranger... Unbelievable.

She is an animal lover like myself, and her love for them, I suspect, has inspired her to be generous...

S. also recently introduced me to The "Paired" program. If we are not a match, she is willing to donate so that I can move up further on the national list, when it comes to that. Even my husband K. wants to do that... They are precious people... and maybe I'm amazed...

During our recent stressful time (robbery, high creatinine, poor economy, my recent admission of addictive tendencies), we have been tested greatly. But such is the roller coaster of life...We all have trials....But S's recent gift to me provided me with a ray of hope, a hug from the beyond, and it briefly diffused my cynicism with the human race...

Thank you, S. You are one very special broad...

The lighter side of things...

A girl and her hubby walk into a Staples store to do a bit of photocopying. She's been a little, uh, preoccupied , of late. Not attending to the "girly" side of life. She neglects to shave her legs, pluck her brows. Quite frankly, ever since she chopped her hair, she barely ever picks up a brush. But, this, this is just pushing it...

Or was she pulling it?

An uber-friendly employee proudly sporting the quintessentially "joe-job" polo-t, comes bouncing over to the ex-red head, now blondie girl. She disconcertingly calls the girl "Ma'am".

"Ma'am"..."Ma'am! When did this happen?" (But that's another blog...)

She leans in to the girl, a giggle on her lips, the gleam of scandal in her eye.

"You have a stream of toilet paper hanging from your pants"...

This is what happens when your husband falls in love with his IPHONE...

(When in doubt, blame the spouse...)

An open letter to the loser who invaded our home...

So, I understand that you are shrouded in darkness... how can you not be? How could you pass by our family photos, my sleeping basset, Daisy, and the care with which we have designed our home; without a single twinge, a deep, gut pang, and lacking remorseful regret?

I want to forgive you, but you have caused us so much grief.

It was simply surreal when Kevin and I realized that we had be robbed. There are no words to articulate the violation, the devastation and the sadness.

You even robbed me of a magical night. All I could do was sob through Obama's speech... an historic night if there ever was one.

You stole all 3 of our laptops, all our jewelry, and my U2 IPOD. Dude, if you only knew how much I loved that gadget...It terrifies me to realize you stood right beside my bed, and helped yourself to it. Ah, but you have little idea how much it meant to me. I saw U2 9 times on their "Vertigo" tour... everywhere from Mexico City to Hawaii to San Diego. God, I hate you.

And then there' s my jewelry.

In my box that I received on the day of my transplant 20 years ago, I had a pendant from my father from his teenage years. He's dead, you know, and the pendant is GONE.

I had a crucifix from my Bedstemor and Bedstefar. GONE.

A silver/garnet ring that reminded me of my mother's hands. GONE.

A gold/garnet necklace from my entire Danish family. GONE.

A crystal necklace, a celtic bracelet, a celtic ring from my adored husband. GONE. GONE. GONE.

My school ring that my Mum really couldn't afford, but wanted me to have, anyway. GONE. And probably in a dumpster somewhere. Who wants a ring with "Northern Secondary School" on it?

Opal and gold earrings from my godmother. I have known her my whole life, you know. She's family to me, and once upon a time, they were hers. Passed down to her goddaughter. GONE.

A gold heart locket from my father-in-law, along with tiny diamond stud earrings that my in-laws so wanted me to have. GONE.

A silver/turquoise pendant from my Dad's sister that was gifted to me at age 8. It's from Israel, one of my dream destinations. GONE.

And the list goes on and on and on and on and on...

Did I mention I hate you?

I will never see these items again, and it breaks my heart. In the hospital they gave me comfort. I used to wear them daily with pride; knowing they were infused with love. And with one swift move, you took them all away. How do you look in the mirror?

You have made me fearful. Fearful of my home, and I believe cynical, too. I so want to believe in the goodness of people, but sadly you have temporarily (I hope!) moved that to the back burner for now.

In the words of one of my favorite comediennes, Kathy Griffin...

SUCK ON IT!!!

And the hits just keep on coming...

How I wish I was talking about the tracks on The Killers new album "Day and Age".

OK. I got my recent blood results.

My blood pressure was up (a sign of kidney function loss), my hemoglobin was below normal (a sign that my kidney can't produce enough of the necessary protein) and my BUN was 44 (high end of normal-25).

But greater than all of it, my creatinine was 2.9. (The high end of normal is 1.4). When I hit 3.5, I will go on a national donor list.

Am I scared? YES. Am I pissed? Hell, yeah.

I believe this to be a long road ahead, filled with uncertainty and fear.

But I have so much support, and I lean on all of you to get me through this. Your words inspire and comfort greatly.

I am adamant about sticking to my celebration of my 40's. I've made it this far, so who knows what's ahead down Henny's path?

The Little Red Haired Girl

I've been experiencing periodic pangs of regret since my last entry. But really, not so much. I have squashed those with exhilaration having finally embraced an unflinching honesty. Now, more than ever in my life, I need to live by this code.

I say regret because I feel I may have overstated my situation. No, I'm not planning to back peddle up shits creek; I feel so freed by the release of some of my demons. And even I'm insightful enough to acknowledge the coincidence of releasing this information on the eve of my 40th birthday. I think, nay, I KNOW I wanted to scare myself with that defibrillatory blog revelation. Fear stops your heart, sends your adrenaline racing and plunges you headfirst into one decision. Fight or flight.

Well, one guess what I'm gonna do.

Milestones can be so cheesy. "Oooh. You're 40." "Over the Hill." "40 is the new 30." GAWD.

So subconsciously planned or not, I guess I wanted that figurative "clean slate moment" that we associate with cheesy events like New Year's Eve. My extremely outward revelations trigged not only an outpouring of responses that astounded, but an inner turmoil that I'm desperately attempting to love; simply because it is mine.

Indeed, I believe I exaggerated a bit when I labeled myself an addict. Am I recognizing addictive tendencies within myself? YES.

Am I sober 95% of the time? YES. At least.

Am I stealing prescription pads? NO.

Ordering on line? NO.

Do I need rehab? NO.

Do I exceed my dosage? YES.

What I am seeing within myself are the beginnings of habits that ultimately caused the downfall of my young father...and perhaps deeper than that, my estrangement from my Mum and brother...But, even I'm not ready to talk about that one.

SIGH.

When I was first prescribed migraine medication it was 1991, and I was to take 1-2 tablets every 4 hours when a migraine first hit. If you know anything about drugs, alcohol; you know that the same amount after 17 years is not going to have the same effect. Your body becomes immune. And if you know anything about migraines, you know that you start to panic if you can't control the initial onset.

Migraines can last for days and are completely debilitating. They do not even closely resemble headaches. If you don't know if you have ever had a migraine, trust me, you have never had a migraine. Not only are my migraines hereditary, but I get brutal headaches from the side effects of all my drugs. Now that I feel tired, weak, headache-y, it's been so hard to get to the gym-which has many times been my salvation in the past.

So, when I got a migraine, the prescribed dose was no longer enough to help. So I took more. I suppose part of me knew that was wrong, but it's really difficult to rationalize anything when your head feels like it's in a vice-being squeezed by a wolf- who is also sitting on top of your head-and howling at the moon incessantly. Oh, and you can't see and you vomit a lot, too.

Am I justifying my behavior? ABSOLUTELY NOT.

I'm just not sure what kind of help I can get now, because my existing medication no longer helps at the right dosage and it is the safest one for me to be on. When I was in Cedars in February, they had to give me morphine one time for a migraine incurred by one of the anti viral/chemotherapy IV drugs I received. And believe it or not, even that didn't completely take away the pain.

Migraines...not so much fun...

(I do have a funny story about how I fainted, post-morphine, on the phone with my doctor, peed my pj's, and woke up with 5 nurses helping me into bed...but maybe some other time...)

Kevin and I have talked very frankly about all this. And he's in this with me. And together, I believe we will find a way out of this...

And now, for my Velveeta moment. I have been thinking about each and every one of you who called, e-mailed, left Facebook notes. For me, there has been something about this level of communication that has thrilled me deeply. Honest words, no holds barred, support unconditional and beyond it all, has been a precious peek into all of your souls. If this is just the beginning of what the fruit of unflinching honesty can bear, then I'm sowing the seeds along a new and slowly emerging path in my life.

I am gently suspecting that I have already made more of an impact in my life as a writer (OK, a BLOG writer) than any one moment as an actress. This excites me. This pushes me. This allows me to dream again. And this is because of the power of communication, in whose power I have always believed in. Always fought for. And fought against my intolerance of others who can't seem to tell the truth. Who live in superficial bubbles. Ostriches with their heads in the sand.

And so I wonder about those I haven't heard from. Are they judging me? Do they no longer want to be my friends? And then of course, I realize whose problem that is. The sad truth is, that judgments come from those who are blinded by the light being reflected back at them from the mirror you hold up to their lives.

So, that's cool.

When I was 8 years old, I wanted to be an actress. But above that, I wanted to be a storyteller. Maybe, through this blog, and all of your incredible support, I am finding a twisty-turny way back to that little girl's dream after all.

And so, ladies and gentlemen, my 40's have already turned out to be the best fucking decade yet!

Confessions of a Dangerous Mind

Yes, it's been a while since I checked in. The month long trip up to Winnipeg was all-consuming and then we went to Vegas (for an awesome Killers concert!). But, I suspect there is more to it than that. And I am trying to figure out why. Why is it always so much easier to psycho-analyze others' issues and not your own? Ah, HA!

Fear consumes me. I read recently that it will be harder for me to get a transplant. I have antibodies from my Mum's kidney that may attack my new donor's kidney. Yes, it scares me, but not as much as dialysis. It's a debilitating way of life, and I don't want to live that way...it's hell on earth...

I appreciate that I still have legs, I don't have cancer, MS, or anything else. Yet, my side effects continue to plague me. I now have high blood pressure (a sign of kidney failure),spots all over my body,(from my pills, no doubt), headaches, and I haven't had my period since August.

Super Freak, indeed.

When I was in Winnipeg, I embraced it fully and love Kevin's family very, very much. But, it's a small town that I am not used to, and well, living in your in-laws basement can try the best of us.

Is this where I dreamed of being at age 40? No. Sadly, all my dreams have vanished away...Dissipated in the California winds...

Sadness permeates my soul. Such a trying time for everyone. But for us, the combination of my stagnant career, a plummeting economy, and the stress of my health is a lot to bear.

And so I wonder. I have fun with Kevin and friends, but I often feel like they don't truly understand how often I get sick. I sleep 10 hours a night; I haven't worked out due to lack of energy for ever so long. I hate that. I miss that so much.

GOD, what a winer. I don't live in Darfur, after all...

And so why have I resisted my blog? Denial? Admittedly, there is a big part of me that wishes this would all go away. Some mornings it takes everything within me to swallow those 13 pills. But I think it's more complicated than that...

Although I really don't subscribe to this way of thinking, societal pressures bear down and compile. I truly believe success is the effort you put forth. And yet...And yet. I still feel unsuccessful, lost and weak.

Although I love my husband very much, it's very hard to see him succeed at photography, retouching, directing, bag piping and singing. God, what a talent he has. He is amazing. But, me, I flail searching for a new direction. But my career will have to wait. I have a long road ahead of me and that doesn't include the pursuit of something new. It's too draining...

But such is the roller coaster of life. There are highs and lows, and the challenge is to conquer them all.

I told you these were confessions!!!

So here's the Big Kahuna.

I have a problem, my friends (a la McCain...).

This is not easy for me to confess, but I need help.

I have been abusing my migraine medication for about a year. It zones me out of my troubled state and helps me forget the world I live in.

Surprised? This innocent face conceals many secrets.

I was prescribed this in 1991, and when I left Cedars in February, it helped me with all the pain I endured. But then I started to exceed my dosage.

I use it to avoid my sadness. And I know that's wrong.

It's ironic, eh? The woman that eats outstandingly well, loves exercising, and is losing kidney function is an addict. WOW. I guess I am. But sometimes my situation is too much for me to handle. No excuse, I know. Judge me if you want. It runs in my family, you know.

My Dad was an alcoholic who died when I was 10 from complications of diabetes. He was also being investigated by the RCMP for drug abuse.

Familial cycles, indeed.

He never took care of himself, and I always prided myself on the way I took care of my health. 20 years for a transplant, when the norm is 10.

I adored my father, but saw his addiction. I don't want to do that to Kevin (or myself).

I am not proud of this. I worry constantly that I will be on dialysis for years, and maybe that's my catalyst.

Please pray for me. I need strength, I need love and I need understanding.

And thank you for all of your support. You are my angels... without it I fear I would be flying on broken wings...

You Must Love Me

Confession time.

I've been extremely depressed. As joyous as I would like to remain, overwhelming factors have suppressed my spirit.

And it's not just the "health stuff", although that bag of tricks plagues me daily. From the side effects of my drugs to the unknown road that lies ahead to the disappointing results that dictate my next move. Oh, and especially the folk that misunderstand a piece of meat or "green powder" will aid my struggling kidney. After endless clarification, it's difficult not to get frustrated.

This kidney of mine is chugging along at 25% function. The toxic drugs are slowly consuming what's left of it. Not to mention the chronic low grade rejection that persists. One way or another this kidney is a goner. I'm not being negative here; simply realistic. 20 years has been remarkable, considering the average life of a transplanted kidney is 10 years.

Believe me, I have been grateful for every moment.

My depression certainly blossomed due to these factors, but there's much more to it.

When Kevin went to Scotland for 12 days I spent most of my time in bed, riddled with headaches/migraines. Naturally I missed him, but we've been apart many times before. But this time I felt unwell, compromised and quite frankly, sick. Pals invited me out, but my body refused. All it craved was rest and quiet. And well, I found that saddening, being all alone. It's one thing to choose isolation; quite another to have it forced upon you.

There was a Sunday that I called all my close friends, only to be greeted by the robotic tones of voice mail. Naturally, that can happen. But on that particular day I needed more. And it broke my heart to realize they were all with family/friends, enjoying what life has to offer. And thank God they were. Life is so precious, and if I can't flourish, I am thrilled that they can.

I believe my depression has its roots in validation. It has been eons since I've felt competent at anything. My acting career has been stagnant for quite some time, and after the explosion with which it began, that has been a difficult path to navigate. I love my husband more than anything, ANYTHING, yet he receives compliments on a daily basis as to his photography. Perhaps this is not his dream, but one thing I have learned is that we all crave validation. We all need to be told that we have an impact on people/this world. It has been a long time since I have felt good at anything and that has slowly eroded my soul.

It's not just the lack of acting. Indeed, I believe I am done with the shallow, unfulfilling, hypocrisy of "the business". It quietly, insidiously takes a toll upon your self-esteem. I used to say I had 4 part-time jobs - acting, make-up, assistant to Kevin and homemaker. Now that these roles are compromised, I feel utterly inadequate. I feel half-assed and lame and desperately crave a strong, fit, energetic body once again.

Boy, am I envious of the busy lives my friends lead. I was that girl once. And in this mess I am trying to find a glimmer, a ray of light that might invigorate me once more. It's not easy when your body won't co-operate, but validation comes in many forms.

Pinpointing mine might just take a little while longer...

Mixed Bag of Nuts

A mixed bag, my results, they were...

The good news was that my cholesterol is normal. HIP! HIP! HOORAY! Must have been a previous funky result. So no more pills.

My creatinine, however, was 2.7 (high end normal 1.4), despite the increase in my drugs. The tag "Let's see how much you can tolerate", was disconcerting at best. I was hoping the increase in my drugs would result in better results. In addition, I need to hit Cedars this week for IV iron injections. My kidney is simply not absorbing iron due to its compromised function. UGH. I hate IVs. But I guess it's all part of the journey...

I am currently nursing a migraine. And I must confess, I am quite drained by all the side effects.

I know things could be worse, and I feel incredibly grateful to the 26 people willing to be tested for me when the time comes. How lucky am I? I think about them every day...

Kevin and I sponsor a child in Bangladesh, and I often think of his trials. Despite the ridiculous health care system in place in the US, I feel incredibly lucky that I've had such amazing doctors (incl. Canada) along my medical path.

We should never take our lives in North America for granted...

Pill Popper

I am pissed.

There's nothing eloquent or thought-provoking about this entry. Today, I'm just pissed.

Yesterday I went to Dr. Dauer with Kevin, my post-it of questions firmly clutched in hand. I asked about the lipid panel we drew last month and was informed that my cholesterol is now high.

This just pissed me right off.

A few years ago, my Canadian doctor, Dr. Cardella, asked me if I was taking medication for my cholesterol because my results were so outstanding. I remember it as an incredibly empowering moment for me. I had simply kicked everything up a notch. Was running 5 miles a day and eating exceptionally well. I was trim and fit and strong...And I was even indulging every now and then.

Everything in moderation, right?

Well, apparently not.

My blood results have been flirting with high cholesterol for the last few months, so when my results come in tomorrow a decision will be made.

To medicate or not to medicate?

I feel like one of those cartoon characters that has steam pouring out of its ears...

My diet is pretty near perfect. I don't even know what I would eliminate. Obviously it's some kind of genetic issue.

Admittedly, this is not such a big deal if you are otherwise healthy. What's one pill a day? But for me, it's clearly something else. I'm angry at yet another notch dug in the proverbial belt of loss of control. Sometimes I feel like this belt is around my neck and being pulled ever tighter with the gradual erosion of my health.

Ah, but who placed this belt around my neck and why are they tightening it?

To live in California is a fantastic thing. It's a place that embraces liberal vegans, eastern medicine and environmental nazis. But it can also be draining when living with a chronic health condition. The feeling pervades in L.A. that one can remain youthful and healthy indefinitely if one is wealthy enough or smart enough. And if you aren't healthy, well, then, somehow it's your fault.

I get e-mails soliciting me to purchase "miracle" juice, that I can't drink because it interferes with my medications. I pass yoga studios with longing, on the days when I can barely get out of bed. And now I have to analyze, even more astutely, the nutritional contents of my favorite Trader Joe/Whole Foods products.

SIGH. Fine.

I already take 18 pills a day. What's one more?

Thank You for the Music...

For me, there is nothing like the thrill of music...

If I ever was interviewed by "The Actors Studio" host James Lipton, I would have great ease in answering the question "What turns you on?"...

Music...

It invigorates me, exhilarates me, often keeps me company and is the absolute soundtrack to my life. Lyrics inspire me, melodies and orchestration fulfill me, and in its unfolding, I find friends, comfort...

And so, if you would indulge me, I would love to share my top 10 albums of all time. This was no easy task, but I wanted to identify those albums that I play endlessly. The ones that hold great sentimental value for me. And the ones that I hold dearest to my heart.

I cheated just a wee bit. I narrowed it down to 11. Hey, it was tough...

But, for better or for worse, here they are...

U2 - Achtung Baby
U2 - The Joshua Tree
Ryan Adams - Gold
The Killers - Sam's Town
The Killers - Hot Fuss
Coldplay - Viva la Vida!
Emmylou Harris - Red Dirt Girl
Duran Duran - Rio
Tears for Fears - The Hurting
Alanis Morrissette - Jagged Little Pill
Jann Arden - Living Under June

And here's the thing...

I'm always looking to be inspired.

If you feel inclined to indulge me; I would LOVE to hear what moves you as well. What are your picks? And don't censor yourselves! "Yanni's Greatest Hits" could also strike a chord...(although, admittedly, I feel ambivalent about that statement...)

But I know new music will only help me keep me quite joyous...so thank you in advance.

hennybird@verizon.net

Do you dare?...

In Bloom

Yes, the last two entries have been stuffed full of complex medical and philosophical musings. But I do have my lighter moments. Truly.

And so today I choose to take a cue from from friend R. with whom I had dinner the other night. Her lack of worry amazes me, for I believe it to be completely genuine. It's a state in which I aspire to reside.

And so I'd like to share one of my most recent joyous moments.

Back in April my doctor called with a creatinine result of 1.6 (normal range 0.5-1.4). After peaking at 3.2, my joy was not to be contained.

Kevin took me on a mini spring vaca to The Four Seasons in West Lake Village to celebrate.

We're not going to talk about my recent 2.8 creatinine.

We're not going to talk about all the side effects I'm experiencing.

And we're not going to talk about what lies ahead.

Right now, I just want to stop and smell the flowers...

Side Effects

So, it's official. I am noticing side effects from the increase in my meds. Headaches, nausea, insomnia, loss of my cycle (15 days late...no I am NOT pregnant!),weight loss. Despite everything I am doing to help....chiropractic work, massage, good eating and exercise, it's just not enough...

These drugs are just so toxic.

The ones I take to suppress my immune system increase my blood pressure, so I'm on something to counteract that. The steroid I take incurs bone loss (I have osteopenia) and gingivitis, so I take calcium to aid with that. I also take iron tablets b/c my hemoglobin is low (my kidney can't keep up), a B complex for the sores that have developed around the corners of my mouth, a specialized vitamin supplement to replace what my kidney cannot produce (the kidney is a VERY complicated organ) and then Lamisil to aid (ineffectively) the fungus I have on my nails that my body hasn't been able to heal since 2002.

It's all very overwhelming. Yet, after 25 years, I think I am used to taking these drugs twice a day. I still wish I didn't have to, but it's my journey and that's life, man...

I don't feel sorry for myself, just frustrated by all the toxicity.

Frustrated by the days I spend in bed when I am wracked with side effects.

Frustrated by the long road ahead...

But I do know things could be worse. So much worse. And I think so very often of those whom are willing to be tested for me. Probably more than they even know. Their bravery stuns me. Their hearts inspire me. Please look at their photos (I am still collecting them). They are beautiful, amazing friends. We could all learn a lesson from them...

And then there's Kevin.

How blessed was I to meet this man? His love for me is glorious. Anyone who knows him, knows how amazing he is.

I never thought I was the type of woman to be lost without her man, but he is my complete and total rock. I never had dreams of getting married, but the team we have cultivated over the last 13 married years (17 together) has surprised me. We are not without our issues, but the recent road we have traveled has strengthened our bond. I can't imagine my life without him.

God, enough sap, Henny!

Yesterday, I watched a repeat broadcast on the "Oprah" show with Michael Moore about being "Sick in America". Boy, did it terrify me. I know I have good insurance. My $189,000 bill at Cedars only cost me $1800. That's 1% and pretty amazing, I think. My meds are expensive - the reason I make a bi-annual trip to Toronto twice a year. But I worry about what's ahead. I didn't qualify for health insurance this year, due to my inability to make the SAG quota. We now pay $690 a month with a government subsidized plan. It runs out in 14 months.

What's ahead? Eventually we will have to buy into a group plan that could cost us $1000-$2000 a month. Stressful to say the least...Canada is looking very appealing, but there are so many factors we need to consider. Our house which has lost a lot of value and Kevin's successful business, and all the friends we have in our lives...and I happen to LOVE California! And so, I must admit, it is extremely daunting to attempt to start over again.

You can't go home again...

Glass half empty?

Although feeling strangely empty without Kevin, I enjoyed many plans today. I went to an estate sale with my pal W. this morning. Enjoying Pasadena by morning was glorious. The sale was not. But then a sadness overtook me. He was off to a surprise party for his sister. The normalcy of the situation created a pit in my tummy.

I was returning home to an empty house, with, albeit, a chubby basset to lovingly greet me...

In the evening I joined some friends to revel in the Olympics. A poker game unraveled in the background, and their laughter and joy only fueled my sadness. After admiring the amazing strength of the Olympians, I felt utter frustration at the nap I'd had to take earlier that evening. How I long to have that strength and discipline once again.

I want a healthy body.

But I am so incredibly grateful for my friends' support. For their participation in my life.

But the normal pace by which their lives unravel fill me with envy. The conversations about triathlons. The laughter that filtered out from the poker game. The stunning athletes at their peak. The birthday party filled with family and friends.

All so routine, so precious. So out of my reach.....

I'm quite sure my melancholy is fueled by Kevin's absence, but I do feel removed from events often taken for granted. And it sucks.

But not to be forgotten is the effort my friends make to include me in their lives. I treasure all of it. They make me feel normal. Regular. Human.

And I love them for it.

I hold no resentment. Currently, this is my journey.

I'm just grateful that they include me in theirs...

The Name of the Game

An ABBA fan, I am.....

So, I'm listening to ABBA's brilliance and watching the Olympic ceremonies on mute, and I miss Kevin madly.

You know, life can be pretty magical at times...

It makes me want to do this!

Sometimes you just need to cut loose, man...

No pain, no gain?

So two nights ago, I pretty much had the worst migraine of my life.

If you suffer from migraines, there's no need for me to explain. If you don't, well, it's kind of like an insidious animal crawling through your head. Flitting from back to front, searing you with unbearable, unrelenting pain. Kevin and I almost went to Cedars at 5 am so I could be placed on a morphine drip. The fact that his flight for Scotland left a few hours later was the only factor that stopped me. Logistics, ya know...

So many variables to be considered. The increase in my meds could be a factor. My cycle is 10 days late. The stress that has side swiped me. My agonizingly slow kidney failure?...

Who knows?

It's been a tough 3 weeks since returning from Toronto. I haven't been feeling well at all. And naturally, I've given my situation much thought. I've been to the chiropractor, had a massage, worked out, and still my headaches, weight loss and weakness consume me. But I intend to monitor everything through that proverbial fine toothed comb, and attempt to spin this positively...

Good health is a tricky thing.

When you have it, you take it for granted. Even I have done that in the past. When you don't have it, it makes "living in the moment" elusive; challenging. Lack of it breeds resentment, jealousy and sadness.

Folk with the privilege of good health, especially those whom have never been ill in their lives can be...draining. I do get their well meaning intentions. Suggestions of supplements, good eating habits, exercise, visits to naturopaths, and particularly the omnipresent "Live in the present!" can be...annoying?...

But their efforts touch me deeply.

I get it. I've had those moments of exhilaration within my body after months of pure eating and exercise. I miss it. Desperately. I've also treasured those fleeting moments of authentic joy when deep within the moment..."Look at the sunset...I love living in California...God, I love my husband...Look how cute Daisy is...I can't believe how supportive my friend is...I love writing...This coffee tastes awesome...".

But then it spirals...

"My head hurts. I miss my Mum. There's never enough money. What if my health insurance runs out? Do we have to move back to Canada? What if Kevin and all of my friends are not a match? Will I be on dialysis for years? What if The Big One hits? I'm tired of feeling sick. People can be so negative".

And so the cycle continues....

We rock and we roll...

My friend T. told me yesterday that she believes we choose the body we are in. That's a hard concept for me to embrace. I've been on drugs for 25 years, and sometimes I desperately wish I could give my body a break from all the toxicity. And yet, AND YET, so many blessings have emerged from this journey. I never knew I was so loved. My bond with my husband has deepened beyond anything I ever imagined. When my body feels strong, my heart soars. I feel invincible. And there's nothing like the high of a good creatinine result.

Nothing comes even remotely close...

Conscious living is so much work. But the work (risk) IS worth the reward...

For me, it's a constant battle to stay in the moment with the many challenges that lie ahead. Especially when I don't feel well. Attempting to be in a joyous state of gratitude when all you want to do is rock side to side in bed is daunting, to say the least. I get jealous of my vibrant, active friends, even Kevin with all his adventures. Their lives bursting full of activity when I struggle to get to the gym.....But at least I'm getting there...And I would never take that away from my friends even if I could. Especially not hubby. I love them all too much.

And so I think I'll end with another Randy-ism.

"There are brick walls in our lives NOT to stop us from achieving our goals, but only to test how badly we want what's beyond them".

Let there be no mistake. I want to feel good again. I want to feel strong again. And I want to live for a long, long time.

Watch me fight...

Randy Pausch, I'm a Tigger!

I'm sure most of you have heard about this inspiring man....and if you haven't, what rock have you been living under?

Randy Pausch died at age 47 on July 25 from a brutal form of pancreatic cancer that metastasized to his liver. He is known primarily for "The Last Lecture", a presentation he gave at Carnegie Mellon and then reprised on the Oprah show.

I suppose it's a cliche to be inspired by his words, for millions have been, but I happen to love cliches, as I believe they are grounded in truth.

Fueled by his situation, Randy spoke eloquently about what our focus in life should be. You can dispute, but I happen to agree with every single thought.

What strikes me deeply is how a man so imminently faced with his mortality could be so joyous. So vibrant and clear. But he also admitted to sobbing - often- with his wife, and that makes me admire him even more.

And yet, he chose to HAVE FUN, embrace a child-like wonder and be a Tigger right up until the end....Are you a Tigger or an Eeyore?

What drives me insane, and this ties in with my ridiculously high standards, is that I still have Eeyore moments. I worry about money. I worry that our house has dropped in value. I worry about my stagnant acting career. I worry, I worry, I worry. Despite my chronic health issues, I still have days wrought with fear. And that drives me nuts. What's wrong with me?

Don't misunderstand. These thoughts don't plague me, but I admit they are a part of my world.

I don't care about things. I care about the people in my life. And I deeply believe the best way to nurture these relationships is to TELL THE TRUTH- all the time. It's the white lies and omissions that rob us of opportunities for growth (I'm quoting my friend H. now)... A Randy-ism - ignore what people say, it's what they do that matters. I believe it's the things we don't do that we'll regret. I don't think I'll care if I have 30 or 50 credits on my resume when I die. I will, however, care that I didn't hold my friend L.'s newborn for an hour until I felt like my arm was going to fall off...There's no moment that can replace that.

As I struggle with my feelings about "the business"; about whether or not I even care about being an actress anymore, I am comforted by this. FIND YOUR PASSION. Even if it's in your 30's or 40's when you find it. Who says that what you decide on when you're 8 years old should be your life's path? There's so much about "the business" that doesn't mesh with my personality. It doesn't make me want to jump out of bed in the morning anymore. I don't think that's the definition of passion...

"Experience is what you get when you didn't get what you wanted". I suspect the experience was more valuable than the goal itself. And did I really want it after all?

Spousal musings...

I feel the need to wax poetic about hubby....

As my grandmother so eloquently articulated at our wedding,"I won in life's lottery when I met K." This is not to say that we don't have our issues, but the strains are minor in comparison to the joys. I love him. And I'd like to share some of the reasons why I do...

1) His singing voice drips caramel. A talent from God.

2) He is the most amazingly talented bagpiper. It thrills me to watch him play.

3) His photography skills are exceptional. Not to be taken for granted; he has an eye few own...

4) When K. laughs it's the best sound in the world....bar none.

5) He calls me on my shit.

6) He allows my vomitus to spew forth, and embraces me regardless.

7) He is a sexy fox...

8) I love his sensitivity for animals. It inspires me.

9) I adore his sensitive nature.

10) I love our conversations. I love how we can talk for hours and never run out of things to say.

11) Attending 4 U2 concerts for me, well, was above and beyond the call... Even if he crossed his arms the entire time!

12) He always has my best interests at heart.

13) He is adventurous; always willing to try something new.

14) He's willing to be a living kidney donor for me...

What a man. What a partner. What a husband.

Thank you, K., for sticking this out with me.....

'Cause I don't shine, if you don't shine...

I'm feeling prolific today, despite this headache....

"I never really gave up on
Breaking out of this two star town
I got the green light
I got a little fight
I'm gonna turn this thing around
Can you read my mind?"

One guess who wrote these lyrics.....

You are currently on hold...

So my "big" meeting today was postponed...and that's not such a bad thing.....

Apparently, I am not currently sick enough to warrant an evaluation. Although the fact that Kevin wants to be a living donor would have qualified me to come in, we chose to wait and see. Your creatinine needs to be in the mid 3's before the team can place you on the national list; and I'm not quite there yet. My result in Toronto was 3.1, but the result last week was 2.8. A decline deeply celebrated!

And so I have hope. Maybe the increase in my meds will preserve this kidney for some time. Or maybe I will spike in 3 months. The waiting truly is the hardest part.

The upside is I have learned so much from the Cedars pamphlet I received. There is much to share with you all, which I will disperse in small doses. I have to admit, however, signing the power of attorney forms was intense...

But today I feel blessed. Life is still good. I sleep more than normal and have chronic headaches. I've also lost a lot of weight since November when I was 129 (chunky bits!). I am currently 112, but I'm sure stress has contributed to that. Complicated times, indeed.

And so I try to enjoy the details; the precious moments that we glaze over. These are the times most joyous. And I have renewed vigor and vibrancy.

Have fun. Love those most dear to you. And celebrate the small things.....

I know I will.....

Strange days, indeed...

I think this is simply hilarious.....

Here's what I just read in my Cedars informational pamphlet.

"Whether you have a long history on dialysis, or have only recently been diagnosed with kidney disease, we welcome you to our program"....Am I boarding the Princess Cruise Line?

Yeah, I bet you're thrilled to get my half million dollar contribution to the Cedars fund!

But I'm not cynical, am I?

Tension Headache

I've basically had a headache since I got back from Toronto 2 weeks ago.

This is not terribly surprising. I've always been plagued by headaches, but even for me this is unusual.

I'm also sleeping over 9 hours a night now-easily. So, I'm starting to wonder...

Some of the ways the body manifests loss of kidney function is exhaustion, headaches, a mental and physical apathy, nausea, loss of appetite. When your kidney(s) function is compromised, you are essentially being poisoned.

Today an enormous manila folder and DVD (entitled "Sharing the Experience") from Cedars Sinai arrived for me to peruse and complete before my appointment on Friday the 1st. This is the "big" meeting. I'll be meeting with my Transplant Surgeon/Urologist (same dude), my Transplant Coordinators, 4 Transplant Nephrologists (3 of whom I met in February), my Transplant Finance Analyst, my Transplant Social Worker and a Clinical Dietitian. I imagine I'll be clinging to hubby's hand throughout the entire 4 hour meeting. That or somehow rocking in fetal position.

So despite overwhelming evidence to the contrary, I'm still desperately in denial that this event is on the horizon. It really is amazing how rooted in truth cliches are. "I can't believe this is happening." It's true. I really can't. There's a lot about this that I can't believe. I can't believe I don't have a single family member willing to be tested for me. And I can't believe I have friends and acquaintances and strangers lining up to save my life.

It's shaping up to be an amazing ride....

Don't forget to stop and smell the flowers...

I sat down tonight with the intention of back peddling my last entry. But upon much reflection I reconsidered. To alter my words would only do a disservice to the concept of honesty. A concept I fiercely believe in. It has been a polarizing entry. Some have praised my bravery, with much respect, and others felt it inappropriate (but, really there was only one person who felt that way....God bless my evolved friends!).

Perhaps, with its raw emotion, that entry was shocking because sadly we aren't exposed to enough total honesty in life. I do, however, suspect my words would not have been of note had they been glowing descriptions of sunsets and flowers. Why is it human nature to focus on a singular negative comment and take for granted all the wonderful ones?

So, of course this means if I am going to dish it out, I have to take it. I believe one of the reasons I love being an actress is that I can enhance communication. Stories help us with reflection, introspection and hopefully, growth. Miscommunication breeds such chaos, so I believe, despite any initial sting, the reward is always worth the risk.

So bring it on.

I can't think of a time in my life that has caused me more stress. The stakes are so incredibly high, that I'm certain I occasionally lose perspective. But I never want to become complacent; I always want to evolve. I always want to learn.

And I know I make mistakes along the way. I am flawed. And I am scared.

My true regret over my last entry is that I neglected to address my blessings. I am in genuine awe of those whom have stepped forward to be tested. You can gaze admiringly upon some of their faces here. I know I do. A day doesn't go by where I don't think of them and the beautiful souls they inhabit.

They give me strength.

They give me hope.

They fuel my soul.

How did I get so lucky?

You know, sometimes it's OK to stop and watch the sunsets and smell the flowers...

Chaneling Anne Frank

So this is the entry I've been reticent about committing to.

When I was admitted to Cedars in February, I collected a list of over 30 who expressed their desire to be tested if/when the time came. Now, that the time is "imminent", that list has diminished in size. Greatly. In fact, there are over 10 on the list I haven't heard from at all, some who reneged on their offer, and many "close" friends who haven't said boo.

Before my diatribe gathers steam, I would like to point out some things.

I am not oblivious to the commitment involved. I guess, for me, it's something I have always known I would do for ANYONE. Maybe you need to have your health insanely compromised before you can fully understand this, but when someone opens their mouth with a promise and withdraws that gift, they need to understand it wasn't an invitation to dinner they withdrew. It was my chance at new life and beautiful health. And it caused me much pain.

The road to hell is paved with good intentions......

The ones I haven't heard from on the list, well, as my dear friend M. expressed recently, I already have their answer.

For me, it's troubling the close friends whom haven't said anything at all. The ones with whom I have built dear relationships and believed we could discuss anything. Believed we were closer than this. One gave me a song and dance about not being able to pay her mortgage. WOW. Did she really not understand that for a new lease on life, K. and I would have gladly covered that? Another said nothing, and another didn't speak up until I approached the topic.

I'm not going to lie. It sucks to know friends are walking around with 2 kidneys when I need one so desperately.

I understand all the concerns, but I suspect a lot of that is fueled by misinformation. (Moms can donate! I have 6 on my list!) Surgery is always risky, and I can't negate that, but this procedure is so routine now.......

And yes, I know I am extremely subjective right now. Wouldn't you be?

I love my friends and will not hold this against them. I repeat, I will not hold this against them. They are too precious to me. But with their entitlement to be fearful, comes my entitlement to be pissed.

Too much to ask? Well, I've always wrestled with expectations. I just don't want to grow cynical.

I have always admired Anne Frank, whom despite the darkest of trials believed everyone was good at heart. She saw past all the chaos and pain and just believed. Believed when there was no reason to.

Well, honestly, I guess I do, too.....

Harlow, Jean...on the cover of a magazine

Well, the stress just persists, but it's not surprising, really. This situation has so many levels to it. I often get overwhelmed by the protocol that lies ahead. Currently, I am so very frustrated by my insurance company (SAG). I am waiting to hear back from the Transplant Clinic in regards to whether or not my "work up" testing will take place at UCLA as opposed to Cedars. It might be more cost efficient at UCLA.....God Bless America!!!! And I have to confess, I think I will die an emotional death if I lose contact with Dr. Dauer at Cedars-Sinai. We have such great affection for each other and after 11 years, I depend on him greatly. It just seems so twisted and wrong......Well, just another challenge I need to conquer.

Lately, I have been feeling tired even after doing the elliptical for 5-6 miles. Yes, I'm slightly paranoid. After my recent creatinine jump to 3.0, I have been very concerned about the status of my energy. When I was 19, my highest creatinine ever was 6.5, and I was on dialysis at that time. I still pray for a decline in my numbers. Constantly hoping that my additional increase in meds will bring these numbers down. I'm just not ready to go through this. But is that time ever at hand? Is anyone ever "ready"? I guess I am in a bit of denial b/c of my commitment to exercise and good eating habits over the last 20 years.....Mmm....My devotion to broccoli seemingly hasn't paid off.....

Lately, Jean Harlow has plagued my thoughts. A beautiful actress, like myself, who died from renal failure at aged 27. Dialysis was not an option then, and transplants were simply obsolete. The 60's were a renaissance period in renal failure assistance. I am so very grateful that I had my transplant in 1988. And 20 years has been a blessing. But hey, this current health hurdle doesn't protect me from getting cancer or any other illness. Funny, eh? There's just no quota we ever reach.......Such is life.

Sometimes it's so hard for me to be content. I think about this every second of every day. The waiting and unknown is torture. I know it's coming....I just don't know when. I take such pride in my good health, and this decline has been very painful.....But, I realize things could be worse and I try to remember that every day. I try to focus on my blessings. Life can be so amazing in the moments when you focus on the good stuff.......

And so, Ms. Harlow, your talent and beauty inspire me. Your decline saddens me greatly. But I channel you now; and promise to hold your brief life dear to my heart and am now inspired to live my life to the fullest--dialysis and future transplant be damned!....And I'm even a California blond now, too.....

Thanks, Chris Martin

So my first real post will be a bit of a rip off. This whole cyber-diary thing has admittedly freaked me out a bit....being the kind of gal who values honesty above pretty much anything else. Where's the line I shouldn't cross(?), because I often lose sight of it in real life. It's much like the inviting sight of a pool by moonlight. You know it will be startling to dive right in, but the as the water envelopes your skin, it soothes and calms and comforts your entire being. So, I'm going to do just that. Dive right in. And censoring be damned. This is MY blog, after all.

Just because I'm losing, doesn't mean I'm lost
Doesn't mean I'll stop, doesn't mean I will cross

Just because I'm hurting, doesn't mean I'm hurt
Doesn't mean I didn't get what I deserve, no better and no worse

I just got lost, every river that I've tried to cross
And every door I ever tried was locked
And I'm just waiting 'til the shine wears off

VIVA LA VIDA, baby!

Deep breath. Jump high. Splash!

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