Poem Written in Nova Scotia

I am not exactly thrilled with this poem. It has its moments, but it's not my best. But here it is nonetheless.




A Year Ago

By Heidi Nye

A year ago I’d planned to leave my So Cal job,
live in my Nova Scotia cabin six months a year,
travel about the U.S. the other six,
sleep in the back of my truck,
save thousands in rent and utilities,
camp and hike and swim,
explore the back roads and little towns of America,
then head north for another six months,
repeat this cycle again and again,
stopping only for true love or death.
I’d make a living as I had in the summers of ‘05 and ‘06,
conducting interviews via cell phone,
using Internet connections and desk space in public libraries
to research, write, and e-mail articles
for trade journals, lifestyle magazines, and clients I‘d picked up along the way.

Perhaps I’d take an odd job here and there:
a waitress gig in Salt Lake,
a berry-picker season in eastern Washington,
a night-watchman month in Tennessee.

Everywhere I’d go, strangers would give me hugs,
keep me in their prayers,
invite me over for coffee or dinner,
let me use their backyards to set up camp
or their canoes for evening paddles on the lake.



Then, eight months ago, I was given a choice: dialysis or die.
I knew this meant the end of my wandering-Taoist dream,
hooked up as I would be 10 ½ hours in 24
to a machine that chugs and glugs, slurps and burps, belches and farts,
destroying the peace of my bedroom,
my sanctuary turned into a warehouse,
boxes squirreled under the bed, behind the file cabinet,
walls of cardboard halfway to the ceiling.

Thirty boxes every two weeks, I was told.
I’d have to rent a U-Haul and a driver
to tag behind me.
Surely not what I‘d had in mind.

I’d envisioned respite from the heaviness of this planet,
this dense realm in which I’ve been placed.
A lighter, freer way of being.
Instead, I’m now more encumbered than I ever imagined possible.

But when I’m quiet and apprehend the force that emanates
from every living thing (rocks, dead wood, and sunshine included),
I recall flight and weightlessness,
a place where bodies of light merge with one another,
each vibrating molecule of one field passing through the vibrating molecules of the other,
like scrambled transporter beams on the Starship Enterprise,
but in a good way.

The demands of surgical masks, insertion sites, sterile bandages,
aseptic techniques, tubing, exit-site care, blood-sugar tests,
meds, patient record-keeping, clinic visits,
tape, tape, and ever more tape too often cloud my mood,
and I make the mistake of thinking this is all there is,
all there will ever be.

It’s then I weep, shaking my fist toward heaven,
where I suspect Archangel Michael is hanging out,
doing his damnedest to avoid me.
The toughest of tough guys, he can take anything I can dish out.

“I am so tired of all this!” I rail at him.
“I’ve failed so miserably at my assignment.
I’m so very sorry.
So very, very sorry.
Please let me come home.”

He stands tall and resilient as ever, too far away for me to see.
But his message is clear enough: There’s no back-out clause in my contract.
And I must live up to his words to me, now almost a decade old:
“The strength that you see within me
is there inside of you.”


Aug. 21, 2009
Wrights Lake, Nova Scotia

Dialysis Has Given Me a New Heart

I wrote the following for the Renal Support Network's annual essay contest. This year's theme was "What Helps Me Lead a Joyful Life in Spite of Kidney Disease." Winners were announced Oct. 1, and winning essays can be read at kidneytimes.com.




Dialysis has given me a new heart, and I am using it to its full potential.

During the decade prior to beginning peritoneal dialysis on Feb. 2 of this year, I was struggling. There were many days when I wondered if this would be my last. Getting dressed or making my bed exhausted me. I would pause before attempting a few stairs, saying under my breath in a mind-over-matter mantra, “It is easy for me to climb these stairs. It is easy for me to climb these stairs.” I’d do the same when walking from my apartment to my van or from my van to my office: “It is easy for me to walk this distance,” I would assure myself. “It is easy for me to walk this distance,” though I would have to stop every few yards and catch my breath.

I had reprieves during which I was asymptomatic, but these were short-lived. For years I slept in a recliner in the living room, since lying prone or on my side put too much pressure on my heart. I was frequently hospitalized for fluid on the lungs, fluid overload, or when I’d gone out of whack in the other direction, dehydration, which would also tax my ticker. Compounding these challenges were severe anemia, which required three blood transfusions; juvenile-onset diabetes; and two heart attacks. My medical emergencies and heart-stent surgery conveniently occurred on the weekends or during vacation, so very few friends or coworkers knew I was anything but perfectly health. And as much as possible, I spared my son from too much information. I wanted the world to see me as strong and vibrant, and for the most part it did.

Through all this, I continued to work as an adjunct journalism professor and as a freelance writer and editor. In addition, I also spent long hours at spas and chiropractor offices as a massage therapist. Attending to my private clients was often at the upper limits of my physical ability, especially carrying the 45-pound massage table and 20-pound bag of gear up and down steps into their homes.

Last December I was told I had two choices: dialysis or death. I seriously entertained the latter course, knowing that I wasn’t interested in being hooked up to a machine that would simply prolong my life and not give me any respite from the ordeals of the last decade. In the end, I decided on peritoneal dialysis, as it promised the most mobility, autonomy, and freedom. I had spent the summers of 2005 and 2006 exploring the back roads of the U.S. and Canada, living out of my van, and backpacking through Malaysia and Thailand before that. These are the kind of adventures I still aspired to have. With PD, I was told, I would not have to confine myself to large urban areas with hemodialysis centers. If I wanted, I could camp 50 miles from the nearest dirt town in the desert, far removed from electricity and running water, and still perform manual exchanges, provided I maintained the aseptic techniques I had been taught. This sounded like the program for me.

So on Jan. 30, I underwent surgery for the placement of a catheter into my abdomen. Because I had put off dialysis for so long, I had to begin PD right away with no time for the incision to heal. Almost immediately I began to feel so much better. Not only could I walk across the room without getting winded, I could walk for two hours without stopping and without chest pain. I can now bound up stairs like someone half my age. And I can dance the night away at my salsa class. As I told my nephrologist, “Except for a few really fantastic kisses, I haven’t felt this good in 10 years!”

So, when I think of what makes me live a joyful life in spite of kidney disease, I have to say that dialysis has given me the opportunity to create my own joy. Prior to PD, every waking moment seemed as if it could be my last, and this put a tremendous drain on my body, my mind, and my spirit. Now, I’m walking for hours and dancing up a storm. I am so incredibly grateful, filled with joy.

Tape Travails

When healthy people think of chronic diseases, they think of them in the most cursory manner. When encountering a Type I diabetic, they think insulin injections. When meeting a heart patient, they think cardiac arrest. When considering the lot of a dialysis patient, they think of being hooked up to a machine. But every one of these conditions is so much more than this. And it is often the thousands of inconveniences and mishaps that go beyond this brushstroke approach to disease that cause the patient the most anguish and that can sometimes lead to her decline or demise.

For me, the current challenge is tape. That's right, tape. Since the beginning of July, when I first developed an allergic reaction to the tape I was using to hold the gauze around my exit site in place, I have had one difficulty upon another in regards to tape or the lack thereof.

Initially, when I first started taking care of my exit site in the middle of February, after the surgical dressing had been removed, I used paper tape. At first, it did a decent job of holding the gauze pads in place around the tubing that projects from my abdomen. But then a shift occurred, and the tape no longer held. The tape would come off during the day or at least become loose. The gauze would slip, exposing the exit site to the air--definitely not a good thing, since this provided a direct path for infection to enter my interior.

So I switched to plastic tape, which was much more secure. But then my body developed a reaction to the plastic, and the skin around my exit site became red and itchy. When I scratched, the skin quickly became more irritated and bled. This, of course, provided more inroads for infection, and I developed what is called a tube infection--germs in the tubing but not yet in the peritoneum. I was given the antibiotic ciprofloxacin, better known as cipro, which really did a number on me: three paramedic visits and hospital stays because of severe vertigo, skyrocketing blood pressure, and uncontrollable vomiting. Add to this depression and unprovoked weeping, and I have put cipro on my list of evil drugs to be avoided at all costs. My nephrologist said that, if I were to get an infection again, he'd have to hospitalize me with intravenously supplied antibiotics if I didn't want to take cipro. Though I dislike hospital stays and really dislike IVs, I said that would be much preferrable to cipro.

I discontinued use of the plastic tape and went back to paper tape. But now I had to apply Vitamin A&D ointment to the abraded areas, which gave the tape even less traction. Placing tape on top of ointment didn't work, so I tried to extended the gauze-padded area so that the tape adhered to non-irritated skin. This meant using a lot of tape--several feet--because one layer did not adhere, so I put tape on top of tape on top of tape. And often the whole thing slipped anyways, exposing the exit site to the air or my clothes. By this time, gauze and tape were covering three-quarters of my abdomen, from my left hip bone to three inches right of my belly button. What's more, the previously non-irritated spots then developed an irritation to the tape, increasing the area that needed to be treated with the ointment and avoided by tape.

Add to this, the hydrogen peroxide, which is to be applied after washing with antibacterial soap and drying the skin around the exit site. Hydrogen peroxide, though, irritated the already sensitive skin. So what to do? Skip the hydrogen peroxide and forego a means to prevent infection? Or use the hydrogen peroxide and irritate the skin, prompting more discomfort and scratching, and thereby encouraging an infection? I decided on the former course of action.

About a month ago, I started experimenting with tubular net bandages--large sock-like bandages that can be cut to any width. (Shown here is an arm with gauze pads and tubular net bandaging, but just imagine the same around my mid-section.) Think of them as midriff tops, only for my abdomen. I initially cut them too narrow, and the bandages bunched up, exposing the gauze, which then slipped down and exposed the exit site. Now I'm cutting the bandages about a foot wide so that they cover my entire abdomen and then some. My thinking was that, if the net bandage is tight enough, it will hold the gauze in place, and I won't have to use tape. This was the thinking at least. Things didn't quite work out that way. With all the stretching, bending at the waist, reaching, and just walking that I do every day, the tubular bandaging moves. I have tried to tuck its top side into the PD belt and its bottom side into my underwear, and this helps, but it still wiggles out of place. And with this wiggling, the gauze slips. So I am back to using tape, even with the tubular bandage, though not as much as I do without it.

The latest challenge is the irritation from the bleach that I use to wash the tubular bandages. I was only given so much bandaging, and since I have to change the dressing every day--on hot days, more than once a day--I ran out of tubular bandaging. So I washed the stips in bleach, as I do the towels I use during hook-up and capping-off. I'll have to ask the clinic for enough bandaging to be able to throw a used tubular strip away every day. Sometimes unusual items like these are in short supply, so I'll have to see.

This morning, while preparing to take a shower, I saw that the bottom side of my exit site, the side under the tubing, is red and sore. Definitely not a good sign. If this doesn't clear, I'll have to visit the clinic and have a nurse take a sample from my catheter. And if it is an infection, I guess I'll be checking into the hospital for a round of IV-fed antibiotics.

Dead Peasants Insurance

"Capitalism: A Love Story" is vintage Michael Moore: poignant interviews with the downtrodden, grandstanding with bullhorns in front of corporate headquarters, and vain attempts to speak with the captains of industry. In this film, he also takes on the co-opting of Jesus (recasting him as the poster child for greed) and Dead Peasants insurance--large corporations like Bank of America, Wal-Mart, and Citigroup that buy hefty life insurance policies on their sickest employees in hopes that they'll die as soon as possible. The name itself tells you how corporations feel about you and me.

Though Moore and the lawyer investigating Dead Peasants insurance did not imply this, it is my theory that this travesty is possible because of the sharing of information between government agencies and corporations. My concern had always been that corporations would use health records to exclude persons with medical challenges from the workforce, creating an unemployed underclass of people with pre-existing conditions. But just the opposite seems to be the case. Medical information is used in the hiring process: The sicker you are, the more valuable you are to the company--dead, that is.

And all this is made possible through the Orwellian-named U.S. Patriot Act, which allows the government to collect, access, and share all kinds of info about you. The same Patriot Act that Obama said he would work to overturn. (If you doubt this, read the entire Orwellian-named Privacy Policy the next time you visit a doctor for the first time. This is one of the documents you have to sign before receiving care.)

That brings me to my one big disappointment with Moore's film: his conviction that the election of Obama would issue in a new era of reform, of taking our country back from its corporate masters. Well, that certainly has not been the case, has it?

It's All How You Look at It

One of the most beautiful things in life is having an ah-ha moment when you see something from someone else's perspective. Well, at least that's how I feel. A lot of other people certainly feel differently, as wars have been waged over disagreement with others' perspectives. But I love these shifts of viewpoint, these novel ways of thinking about things that perhaps I would have never considered otherwise. I've had a few of these moments lately. Let me share three.



Sam is one of my favorite men of all time. He's witty, he's extremely intelligent, he has a devilish glint in his Paul Newman-blue eyes, he beats me by a hundred points or more every time we play Scrabble, and he always tells me how good I look. Sam is an absolute delight at 90 years old.

Someone must have told Sam that I was on dialysis. He asked me how I was, and we chatted a bit. Then he closed the conversation with, "Well, new horizons are opening to you." I smiled and said that was an unusual way of looking at it.

I had always thought of "new horizons" as an expression of something positive in someone's life--graduation from college, a new locale, a new job, marriage, the birth of a child. I had never thought of dialysis, or any health challenge, as a new horizon, but it certainly is. Just like the positive ventures I listed, dialysis gives me a perspective on life that had been denied me previously. People treat me in a different way than they did before, just as they treat someone who graduates from college, moves away from a familiar place, lands a new job, gets hitched, or brings another human being into the world in a different way. And I see my life differently than I had before, just as college grads, people in an unfamiliar setting, new guys or gals in the office, newlyweds, and young parents see life differently than they had previously.

Another perspective shift was prompted by something my friend Heather said. She was complaining about how people are always asking her when she's going to get married and why she isn't married yet. She said she finds this annoying. I said that she should think of this as a compliment. Though years ago, people used to ask me this question, it's been a long, long time since anyone has. They no longer consider me in the running. Since people are asking Heather this question, they still consider her worthy of marriage, someone who deserves to be married, who has every right to expect to be married someday. They no longer think this about me, especially now since dialysis.

This feeling of being outside of the realm of potential romance was brought home very clearly in another recent conversation. I was talking with a friend and her friend. The latter asked how I was doing with dialysis. I said that emotionally things had been difficult, but that physically I was feeling great. She then brought up the story of a friend of hers who had married a man with a colostomy--not that dialysis has anything to do with a colostomy, but I guess she figured it was on the same level of unattractiveness as dialysis. She said they were working around it and seemed to be happy. I said, "Yes, but he's a man. I'm a woman." The two of them nodded, knowing as all women know, that women will accept men with challenges that men would not accept in a woman.

To bring things full circle, I was at my mother's assisted living facility yesterday and talked with Sam. He said that he had met a female volunteer whose number he wanted from the office staff. He said he hadn't felt this way about a woman since, well, he'd turned 90! What a funny guy! So Sam is still thinking about courting members of the opposite sex, so maybe there's hope for me. It's possible that somewhere in the world there is a man who could love me for the treasure I am and not be dissuaded in the least by dialysis. It's possible. Thanks to Sam for another perspective.

Get to Know Me First as a Person, Not as a Dialysis Patient

I wish my friends and acquaintances would not tell their friends and acquaintances about my health. I wish they would allow me to meet their friends fresh and new, not with preconceived notions already put into their heads.

Over the last several months, I have seen this situation repeated over and over: I meet people for the first time, but they seem to know about me already. Often they ask, "How are you?" in an overly concerned way. My response is to ignore this sentiment, smile, and say, "Oh, fine. How are you doing?" Basically, treating their question as normal, polite conversation.

I wish my friends and acquaintances would allow me to make the dialysis confession to those whom I wish to know about this. I wish that instead of telling their friends in advance about "my friend Heidi, who is on dialysis," they would simply say, "Oh, my friend Heidi, who ___________________." The blank could be filled in with any of the following: is a poet; is a writer; used to teach journalism at Cal State; does massage; lives in Southern California; has a cute, little dog; is a tall, trim, good-looking blonde; is a smart cookie.

I feel that dialysis is on the level of being gay. It's the gay person's call as to whom he wishes to come out. It isn't for other people to make that determination.

I especially feel this way because, darn it, I would like a relationship some day. Telling men in advance of meeting me that I'm a dialysis patient doesn't even give them a chance to get to know me as a woman first.

But potential lovers aside, I would like everyone to get to know me as a person first. I would like to be known as fun-loving, humorous, witty, intelligent, and giving. Not just for people to think of me from the get-go as "dialysis patient."

An Ending, a Beginning

I have parted ways today with a woman with whom I have had strained relations from the get-go. We met through a mutual acquaintance a few years ago. She frequently wrote things (we communicated primarily through e-mail) that I found condescending, and I frequently wrote things that insulted her. She probably didn't mean to be condescending, and I really tried not to offend her. It's as if we spoke different languages and so didn't understand each other.

In a conversation today with my new friend and nextdoor neighbor, I realized that there is balance in the universe: one friendship ending, and a new friendship deepening. First, some background: my neighbor and her husband are Tibetan Buddhists and provide housing for a monk-friend when he is in town. We have similar political views and intellectual interests. They have a beautiful craftsman-style house and an even more beautiful backyard, a virtual paradise, complete with a fish pond. She is a reading specialist who works with ESL students, and he works with hospice patients. They have a German shephard and a parrot, so we go for walks together with Rasputin.

The first bonding experience with my neighbor was July 1, when I had the first of three paramedic visits this summer. As the paramedics carried me out, she took control of Rasputin and took care of him while I went to the ER and then to another hospital. This was a pretty dramatic scene, with my neighbor walking briskly beside the stretcher and me crying, asking her to take care of my little dog.

My new friend is one of the sweetest, kindest people I have ever met. Her husband is a very good guy too--the first man Rasputin warmed up to.

This afternoon, while taking a walk with our dogs and me, my friend announced that she would like to give me one of her kidneys. I was really touched by this. She had called her doctor to see what her blood type is, but there were no records of this. I told her that she should go to the United Network for Organ Sharing (UNOS) site and that I would give her some brochures. But most importantly, she should find out her blood type because if she's not O+, then it's a no-go.

To date, four people have offered their kidneys: Helene, my good friend in Nova Scotia; Tim Howard, a former colleague at Cal State who has become a dear friend and now lives in Sacramento; Roger Ball, my friend through letters of 20 years who lives in the California desert; and now my dear neighbor. Helene and Tim are not compatible blood types, and Roger's health is poor, plus he's a smoker.

Every time someone has offered, I've been really touched. That's so beautiful. Even the offer is amazing. All four of these offers have given me hope--hope in the transplant process and hope in humanity.

But of course I must first get on the wait list. Even if I had a compatible donor ready to go, I still would have to be approved by the transplant team. And before that can happen, I have to have the heart surgery on Oct. 30.

But back to my neighbor: I am so grateful for her friendship, the only friendship I've ever had that is renewed on almost a daily basis, if only to say hello in passing. I really like that. It sure beats seeing friends only once or twice a year, that's for sure.

The Beauty of Small Talk

I really enjoy small talk. This may seem contradictory to what I wrote yesterday about wanting depth and intensity in my loves and my friendships, but it isn't. You see, though I'd very much appreciate having a lifelong partner or a lifelong friend whom I would see and interact with on a daily basis, I derive a great deal of satisfaction from brief, pleasant, cursory exchanges with strangers or acquaintances. Especially since the words exchanged are by and large positive, often compliments of one sort or another.

I have a bunch of these encounters every day, and they bring me joy. Chatting for 30 seconds or maybe a minute with other dog owners during my four-times-a-day walks with Rasputin. A few words with store clerks or with neighbors. Going up to a woman who is exotically or beautifully attired and telling her she looks fabulous, as I did a few days ago to a young, tall, thin, grocery-shopping gal with a short black dress and a coon's skin hat. Or longer exchanges, like the visit I just had with Teri and Carolyn at the journalism department office. They are such sunny gals, and I always enjoyed talking with them when I worked at Cal State.

These light and easy conversations bring out the best in people. They are not loaded down with heavy emotions or drama; they are like water flowing in a gentle stream--no obstructions, no frenetic energy, no expectations, no clinging to the person after he or she has gone.

As I move about the world, I will work at being even more present during these moments, keeping the intention that these positive meetings reinforce the spiritual grid that holds humanity together. A few pleasantries with a neighbor, clerk, shopkeeper, waiter, dog owner, or salesperson have a ripple effect. We both depart with a little glow, a fondness and a hopefulness, and we each bring a spark of that to all the other encounters we have that day. In this way, small talk is like Bondo, strengthening the grid, increasing the world's love vibration.

In particular, I must be attentive to my interactions with service personnel. So often--perhaps 90 percent of the time, maybe more--they are not paying attention and so make mistakes or ask questions I have already answered. Instead of calling them out on their mistakes and their faulty information, I need to increase my love vibration. Most of the time I know what to do anyways, and I don't need their help. So if they give the wrong information, that's OK, because I'm not counting on them for advice anyway.

This is particularly true of the nurses at the peritoneal dialysis clinic. They frequently give erroneous or contradictory advice, and I'm always making a big deal about their mistakes, which of course causes more problems. I just have to let it go. If their false info causes other patients harm, then it is up to those patients to do something about it. My trying to improve things hasn't improved anything, so I just have to let it go. The frustration and anger I've displayed regarding these matters have not done me any good. I have to keep things light and easy with the staff, and if I really can't figure something out on my own, I can ask the doctor.

Another positive way to approach small talk is to consider it a wonderful gift. When one's family and friends are not around, God sends strangers to us to make light, happy conversation. The trick is to realize these gifts every time and every day. To appreciate the light and love of humanity that shines through these transitory meetings.

Do People Laugh at Cancer?

A few days ago, I mentioned to someone that I would sure like to do X, that X had been my plan, but that now X wasn't possible. She asked why. "Dialysis," I replied. She responded with a laugh, that inappropriate laugh that some people often use in such situations.

Her response made me wonder: Do people laugh at cancer too? Not in a general sense, but to the cancer patient's face. The next day I received an answer.

(I wondered about cancer because healthy people consider cancer the ultimate in health challenges. I'm not sure there is any one worse condition, but I have often wondered if cancer deserves this spot. After all, with cancer you either go through an awful time and then you're fine or you go through an awful time and then you die anyway. But you don't generally have to deal with cancer for decades or all of your life, though I'm sure there are exceptions to this. But any way, cancer seems to be at the top of the heap of physical challenges in most people's estimation, so I wondered about cancer and inappropriate laughter.)

I was attending a tai chi class that is taught by a cancer survivor. I asked him about his T-shirt, which advertised a river-rafting company in Idaho. I asked if his wife had gone with him. He said no, that the trip was only for cancer survivors. Another person in the class made a comment and laughed. That inappropriate laugh.

I then noticed the instructor's reaction. It was clear to me, even if no one else noticed, that he was disturbed, perhaps perturbed, by her laughter. I was seeing on his face the same reaction that must cross my face, and I didn't like it.

So, this is something I'm working on: Not allowing inappropriate laughter or insensitive comments to ruffle my feathers. In fact, perhaps the best way to help this process along is to smile and brighten my eyes when this occurs. Not that the other person has to see the smile, but more of a smile as one does during meditation or while taking a walk alone in the woods. A light smile that in and of itself lightens the mood and keeps me focused on my true nature. Rather than feel hurt because the other person is slighting my problems, turn it around and smile as if these problems are illusory.

As Tuyen Tran, the Vietnamese friend who long ago introduced me to zen, said, "Which is bigger: You or your problem?" I have been responding to these insensitivies as if my problem is bigger. Regardless of how the other person would answer that question, I need to start answering it with "I am!"

The Appropriate Role of People in One's Life

Rasputin is a great teacher. He has reinforced lessons I thought I had learned long ago, but were in need of relearning. For example, he loved Canada, absolutely loved walking without a leash and romping in the woods. But he is equally happy here in the city, sleeping the day away, playing with his toys, and going for walks on a leash. The lesson: Be happy wherever you are and whatever you're doing.

Rasputin is also helping me put people in perspective. I confess I am and have always been a romantic, with fantasies not just of being swept off my feet by a wonderful guy but also of adventures with a lifelong friend, a woman with whom I would share my feelings and she, hers; a comrade who would travel with me and be like the sister I never had. In other words, I have always wanted from friends and lovers an intimacy that either very, very few people are capable of or the people I have known are not willing to or able to provide. This has so often been a huge disappointment for me. But this has been my problem, not the fault of others. It has been my mistake for expecting from others what they are unable or unwilling to give.

Since adopting Rasputin, my expectations of people have greatly diminished. If people are insensitive, I have Rasputin's unconditional love and acceptance to go home to. If friends don't have time to get together, Rasputin is always ready for a walk or a belly rub. If there is no person to talk with, Rasputin is the best listener I've ever known, looking at me with 100 percent of his attention focused on my every gesture and word.

Rasputin is helping me put people in perspective. They are busy with other things and with other people. If they don't have time or energy for me, that's OK. It truly is.

As my friend Araia, the nature spirit who dwells in the woods of northeastern Washington, told me many times, "Heidi, if you get a dog, you'll forget about a man." She's absolutely right. I had been thinking a great deal about one particular man, fantasizing about him and being frustrated by not having him. Now I hardly think of him at all, and when I do, there is no urgency to it, no desperation.

And I must admit that my relationship with Rasputin is far better than any I've ever had with a man. He's more loving, affectionate, trusting, and playful than any man I've ever known. He's got a great sense of humor. He's filled with joy. He never complains or criticizes. He doesn't offer advice. And he doesn't psychoanalyze me. And he does not have breasts and he is not "pregnant," like most men. He's trim and good-looking.

So, thank you, Rasputin, for helping me to see people as they are meant to be seen. They can be wonderful in small doses, provided I have no expectations for them and do not think about them when they're not around.

Learning to Accept the Insensitivities of Others

Inappropriate laughter. Insensitive comments. These are the sort of things one might expect from strangers or from one's enemies. But most often, at least in my experience, they are put forth by friends.

A sensitive subject will arise, and the friend will laugh as if it is such a trifle or will say something that is dismissive or something that makes me realize that we are living on different planets.

In one recent case, I was at a barbeque. The hostess's stepmother said that it is easy to do nothing all day. The hostess turned to me and said, "That's what you're doing, Heidi."

This made me wonder: Do healthy people really believe that having a chronic illness means you are doing nothing? If so, I would be very happy if they would like to trade places and do all my "nothing" and I take up their "something."

I estimate that when I add together all the hours each day I spend in medical tasks--10 1/2 hours of dialysis each day and another 45 minutes of set-up and clean-up; checking and recording blood sugar levels and blood pressure; driving to and participating in doctors' appts., lab tests, and diagnostic exams; massaging my feet, hands, ears, and eyes to increase blood circulation and prevent amputation and blindness; going to acupuncture appts.; hospital stays and paramedic dramas; ordering, getting, and organizing meds; emailing and phoning doctors and nurses; clinic visits; online research on kidney disease; attending kidney conferences and support groups--I must average at least 15 hours a day in just attending to my body. So add to all this "nothing," I still work as a writer, editor, and massage therapist; do my housework, cooking, and cleaning; pay my bills; and care for my mother's finances, errands, and medical care. Oh, yes, and Rasputin! A whole bunch of nothing, for sure.

Yesterday I spoke of this to Aaron and told him that I have to learn how to keep these people's insensitivies from affecting my health and well-being. Perhaps the best way to deal with insensitivities is to pretend that the comments were issued by children rather than by adults. For example, if a young child came up to me, pointed to my stomach, and said, "Why do you have tubes coming out of your tummy? Are you a robot?" I would laugh. The child is ignorant and doesn't know that this is inappropriate. That is how I need to start treating adults who say insensitive things or laugh at things that are difficult for me. Just think of them as children who don't know any better. Even Jesus took this approach. When he was on the cross, he said, "Forgive them, Father, for they know not what they do."

Of course, as Aaron pointed out, this does not make for very deep relationships if you can't talk about how you're feeling and if you always have to fill the archetype of the happy sick person. That's true. But that's why I've got Rasputin! That little joy bucket is pure unconditional love. I am so very blessed having him in my life. The desire for deep, meaningful human interaction has significantly diminished since he's been with me. Of course, I am open to true love or a deep friendship, but they're not something I think much about now. Thank you, thank you, thank you, forces of the universe, for sending Rasputin to me.

Hooray! At Last, Some Movement in the Transplant Process

After being dead in the water for at least five months, I have finally seen some movement in the transplant process. I met today with Dr. Michael Lee, the new cardiologist at UCLA. He has replaced Dr. Van Herle, who is the cardiologist who was initially assigned to my case but who has left UCLA.

After an intro that made me think he was going to say "no way" to a transplant, no matter what I did, Dr. Lee said that, if I do the following, he will recommend to the transplant team that I be put on the wait list:
1) get a stent in the artery on my lateral side,
2) have an ultrasound and a fractional flow reserve test done of my right artery and perhaps get a stent put in there or have bypass surgery for that artery, and
3) get him the results of my most recent stress test.

A month ago I was averse to having another stent because 1) the first stent, placed in November 2006, did nothing to improve my condition, and most importantly, 2) the dye used for an angiogram and for stent surgery is damaging to the kidneys. Now I just want to get on that list. I am hoping and praying that my kidneys will be protected during these procedures, as I want to stay with peritoneal dialysis and not have to switch to hemodialyis.

So, here's the game plan now:
1) Schedule stent surgery.
2) Perhaps go back for the assessments of the right artery if Dr. Phan, my Kaiser cardiologist, feels that it would be better for my kidneys if the procedures were done on two separate days.
3) Depending on the results of the right-artery tests, a) do nothing because the right artery is just fine, b) get a stent, or c) have bypass surgery.
4) See Dr. Lee again and get his OK for the wait list.
5) Perhaps see the transplant surgeon again.
6) Wait for the transplant team's approval and for the letter of approval that puts me on the wait list.
7) Work with a live donor--the best scenario. Or wait for a deceased donor.

At my next meeting with Dr. Lee, I plan to ask him if he could recommend me for the kidney-pancreas wait list. That would be great because 1) my wait time for a deceased donor would drop from 7-10 years for a kidney-only transplant to 2-3 years for a kidney-pancreas transplant. This is because more people need just the kidney than need both organs, so when a compatible donor comes along, the patient who could use both organs is given the organs rather than wasting the pancreas and only using the kidney. 2) I would no longer have to wear an insulin pump or take insulin injections--the answer to my decades-old prayer!

A Successful First Trip

Hooray! I made it to Nova Scotia and back without a visit from paramedics or a hospital stay! My blood pressure was dangerously high for about a week, but I finally went to an acupuncturist in a town about an hour from my cabin, and he brought it under control.





I am very thankful that all went without major incident, especially as I was in the hospital three times in the month and a half just prior to my trip.

A Government Racket

Even though I just turned 51, I had to sign up for Medicare as of June 1 (when still only 50) because I'm on dialysis. So now I'm part of the Senior Advantage program with Kaiser Permanente.

An amazing way the government is making money is through Medicare. Yes, contrary to all that you have heard about Medicare being in dire straits, at least in its collections process, it is raking in the cash and in many cases not providing services for the payments received. Let me explain: I just received my Medicare bill for $289.20, due Sept. 23, for October-through-December coverage. So if I should die on Sept. 24, the government keeps that money, even though I am not alive to accept any services. And it clearly states on the back of the bill that I am responsible for paying the bill even if I have been taken off the Medicare rolls, as happens, for example, three years after a kidney transplant, the government assuming that a kidney patient, having been out of the workforce for years, perhaps a decade or more, can jump back in, in her 50s or 60s and get a great-paying job with health benefits that will cover the huge cost of immunosuppressant drugs. What fairytale land are they living in, huh?

So Medicare is operating in a way that would not be allowed in the private sector. Can you image, for example, having to pay your rent three months in advance and your heirs not receive a refund if you should die and they move all your stuff out of the apartment immediately? Or that you would be responsible for your rent if you were no longer living there? It just wouldn't happen, but the government can get away with this. Imagine the money they are taking in for people who die or are removed from the rolls and have already paid their premiums!

Another scam is Social Security in which payments are always one month behind because, as a rep told me, I am paid Dec. 1 for November because SS doesn't want to pay me for November on Nov. 1 as I could die some time during the month.

More Cabin Pictures

Friend Heather had asked to see photos of the cabin, so here goes. Please note that I did NOT paint the exterior that amazing green. The former owner, Norm, got it in his head to do so just prior to putting the place up for sale. I guess he thought it would be a selling point!






And here are a few of the shed that is also on the property. It's full of just about everything you'd need to build another cabin, if you had a mind to: flooring, shingles, windows, lumber, lots of nails, curtain rods, molding, a toilet, chairs, a table, and a bath tub.

Work on the Cabin

Though I have had a lot of time to explore and read and generally goof around during my stay in Nova Scotia, I still accomplished some work on the cabin--something that makes me feel really good.

One project that I have wanted to do for five years now is decorate one of the walls in the porch with items I brought with me from California or collected along my way to Nova Scotia during my grand solo camping-back roads adventure of the summer of 2005. Though the task is not completed, and will not be completed this time, it is started for God's sake! Last Monday Aaron painted the wall blue, or as the color is appropriately named "giggles." The next day, Aaron, Helene, and I plastered pebbles, earrings, statues, chipped pottery, shells, state pins, and so many other treasures onto the wall. A lot of it fell off, being too bulky or not flat enough. A few days ago, I added a few more items, including green, yellow, and purple pull rings from my dialysis bags and the plastic ends of the dialysis tubing. One thing did not go according to plan: Though the paint lady added the right amount of color to both the primer paint and the plaster, on the wall, the two are not quite a match, perhaps because the plaster on its own is not a true white. So, next time I will carefully edge each item on the wall with the primer. A big job. But as it is now, I am so happy that I have finally put these items up. As I said to Aaron, now for sure we aren't selling this cabin. Who else would appreciate this!





Embedded in the wall are items that friends gave me in 2005 to include in this grand art project: a moon-and-stars tile from Jamie, bottles of green abundance powder and red love powder from Georgette, and a half-dollar-sized basket woven by Robin.

The other big project was windows for the porch. Back in the summer of 2005, I drywalled the porch, but planned to put in windows the next year. That never happened. Finally, I've got windows, put in by Wayne, a carpenter who works for my general contractor-neighbor Merwin. Wayne used three windows that were in my shed. So happy with my new windows!



Other projects accomplished:
* While Wayne was working, he let me borrow his ladder. I used this to clean out the gutters, which were filled with old leaves and dirt, even little trees.
* Wayne also let me use his power saw to down some trees that were growing too close to the cabin. I thought this was a good deal of fun.
* I replaced a hasp on the front door. Later Wayne redid this, saying that I should have mounted it the other way so that the screws are hidden under the arm when it's locked. Otherwise, someone could just come by with a screwdriver and get into the cabin. I said, "But someone could use a crowbar if they really wanted in." But that was awfully nice of Wayne to redo it because it had taken me about an hour to do it with my manual screwdriver.
* Though Helene had put two coats of paint on the floors of the bedroom and the porch, I had to touch up both because of my cleaning solutions for dialysis hygiene and Wayne's carpentry, respectively.
* I took a broom to the inside of the shed and recycled a bunch of empty plastic containers.

So, I'm happy with the work I accomplished. Next year I'll finish the porch wall, and I'm sure they'll be many more tasks to check off.

Rasputin's Going to Miss This Place

Since his arrival in Nova Scotia almost three weeks ago, Rasputin has become more and more adventuresome. At first he was underfoot when we went for walks in the woods, and I often accidentally stepped on or kicked him. Then he began poking his head into the ferns and grasses at the side of the dirt road near my cabin. And then about a week ago, he took the plunge and went into the wild woods. Many times he has raced off, and I have not known where he is for up to 10 minutes. This is a bit disconcerting, as bears and packs of coyotes abound in this area, and little Rasputin would be an easy meal.

His hunting skills, however, leave much to be desired. His basic strategy is to attempt to scare his victim to death, lunging at a toad or a bug and then jumping back when they move. The only prey he has secured have been several live flies (he makes the most puzzled face as he downs them) and a dessicated gopher, or perhaps a squirrel, shown here.



He does a happy dance whenever I get ready to go outside. He absolutely loves the freedom of being leash-less. He's really going to miss his woodsy adventures when we get back to Long Beach and his outside excursions will be on pavement and concrete--with a leash.

Though the first two weeks of my visit were full of events with people--first with Helene and her friends and last week with Aaron--this week it's been Rasputin and me all the way. Aaron left last Wednesday, and Helene has been at a family reunion in Montreal. I really enjoyed seeing and doing things with other humans, but this week alone with Rasputin has been wonderful too. We've taken a lot of long walks, explored a few of the provinicial parks, and returned to Hampton Beach, where Helene and I had gathered surf-tumbled pebbles during my first week.

I will be leaving my cabin very early Wednesday morning to catch a 9:30 a.m. flight from Halifax, a two-hour drive away. I will miss these woods and the stream, lake, and river near my cabin. So many times during these walks, my mind has been completely clear, devoid of any thoughts, at peace.

I could very easily live for many months like this, taking walks with Rasputin, exploring Nova Scotia's natural beauty, making light conversation with people when I see them, and having a social engagement now and again. This had been my plan only a year ago. I had planned on leaving Cal State, driving to Nova Scotia, living here for six months of the year, and spending the other six camping and traveling throughout the U.S. I would live on writing and editing jobs, with no rent to pay. Well, this had been the plan, but dialysis has changed all that.

Thank You, Helene!

My good friend Helene scrubbed my cabin to get it in shape for my visit. She bought the needed Lysol spray, hydrogen peroxide, paper towels, Lysol wipes, and sundry other supplies for keeping a clean abode. She also was there when the dialysis solution arrived, and she took inventory of the boxes. And she even finished off the bedroom, filling in gaps in the paneling through which the insulation was showing through, then painted the bedroom walls and floor. She put a baseboard in, too, to give it a tidy look. The paint she chose is a beautiful blue that matches the blue in the gnome curtains and table cloths. In short, she put in a lot of work to make my cabin clean and welcoming. So a big thank you to Helene!



Thanks, too, to Helene for including me in her social life. In truth, I have had more social engagements in the past few days than I have in six months in So Cal. And the amount of time I have spent with Helene, even though she is working more than full-time as a cook at the pub, exceeds the time I spend in a given year with any So Cal friend. It's amazing how in small towns, people slow down and take the time to be with one another. This is such a wonderful change of pace.

Would You Laugh if You Swallowed One Month's Pay?

For the last eight months or so, I have been having challenges with my veneers. My upper four front teeth have veneers because, for all of my childhood and much of my adulthood, people would comment about my yellow teeth. Yellow teeth run in my mother's side of the family, and whether that's a genetic thing or a geographical thing linked to the water, I don't know. But I've never liked them, and so about 15 years ago, I did something about it.

Lately, the adhesive has not been holding, so I have made frequent visits to my dentist, who, bless her soul, is always trying new ones on me. Denette gets excited about trade shows, hoping she'll find a miracle product to use on my veneers.

Denette is such a mensch that she hasn't been charging me for all this rebonding. She's probably fit me into her busy schedule a half dozen times during the last eight months. So when one of my veneers kept falling off, I didn't want to bug her. I thought I'd wait for my next teeth-cleaning. So during the past three months, my veneer has come loose a hundred times or more. Sometimes all the way off and sometimes just a little. Sometimes it ends up in my food. Sometimes other people see this!

I wanted to get this taken care of before I left for Canada tomorrow, so I have a dentist appointment in about a half hour. The only thing is during lunch today, I swallowed my veneer! Can you believe it! Three months of me gluing it in place with Elmer's and of futzing with it no end, and then hours before my dentist appointment, I swallow it! The irony of this has not escaped me.

All I can do is giggle.

And then I remembered how much veneers cost. Oh, my God! $500--my entire monthly pension from Cal State! I wonder how many people would laugh about swallowing their entire month's pay! Perhaps that should be an online dating question. It would certainly be a great divider of the world's people--those who could chuckle and those who would curse.

Might as Well Include Health in my Pact Too

OK, from now on, I will not comment on my emotional state regarding dialysis or my health in general. I will only state facts. I can state facts such as "I am depressed due to an antibiotic," as I did in an earlier post today, but it does no good to voice negative emotions. Voicing them merely feeds them. For most of life, I have followed this creed, but it seems that I have slipped quite a bit lately. I will be more diligent and self-controlled from now on.

Another Wait List Update

Well, the results of the MUGA test were not great--35 percent pumping capacity for the left ventricle. Dr. Phan says that anything 35 or lower is a sign of a heart that could stop at any moment without warning. He and Dr. Lee from UCLA are now thinking of an implantable cardioverter defibrillator (ICD). This is generally used for patients with arrhythmia, which I don't have, but in my case it would be used as a preventative, that is, in case my heart does stop, this would restart it.

My trip to Canada will give them a month to mull it over. I have an appt. to see Dr. Lee on Monday, Sept. 14, after I return from my vacation.

Other than that, things are in a holding pattern for the next few weeks.

Belated Birthday Thanks

I would like to say a special thank you to Aaron, Bev, Diana, Chris and Mark for taking me out for my birthday. Aaron bought me a plant for a decorative pot my neighbor gave me, and then took me out for Indian food at my favorite Long Beach restaurant, Kamal Palace. Unfortunately, later that day, I had a violent attack of vertigo and up-chucked the chutney. Diana and Bev took me to dinner in old town Tustin at Rutabagorzand then to a small comedy club in a nearby office complex. We sat in the front row (of three rows) and laughed and laughed, which is always a good thing.

The event with Chris and Mark was a surprise. I knew that the two were flying into LA from San Francisco for Chris's birthday (one day before mine), and Mark and I had talked of the three of us getting together for a meal. But then they invited me to share their box seats at the Hollywood Bowl to see Grace Jones! Wow, what a show! Mark's long-time friend John Halsey accompanied us. This was quite a delightful evening: Grace Jones looked great, she was incredibly sexy, and her costumes were out of this world.



Mark and I are always tremendously silly together, which I enjoy no end. I'm sorry that Chris and I did not get more of a chance to talk, as Chris said, "You two have been speaking your own language all night long!"




So, thanks, guys, for including me, and thanks, Chris, for my ticket.

Off to Canada

I'm off to Canada on Tuesday. This is a huge step. My first trip since beginning dialysis, that is, except for one night away from home during Chick Cabin Weekend in May.

I have had three paramedic-ER-hospitalization dramas in the last five weeks. All episodes of severe vertigo (environment spinning, bouncing up and down, and side to side[ couldn't stand; couldn't walk; closing eyes didn't help), uncontrollable vomiting, and very high blood pressure. The cause of these crises is undetermined, but I tend to agree with my nephrologist, who feels the culprit is ciprofloxacin, which was given to me at the end of July to combat an infection in my dialysis tubing. Cipro was also responsible for bouts of depression and weepiness during the treatment time. Unfortunately, cipro is the only oral antibiotic that can attack micro-organisms living on plastic. The only alternative is to receive antibiotics by IV in the hospital. This would be much preferrable to these vertigo spells and to the depression.

The first bout of vertigo was July 2, which was prior to the cipro, but this was also associated with very low blood sugar. Vertigo has never been a symptom of hyperglycemia for me, but perhaps my symptoms are changing.

I had a less severe episode on Wednesday. I was simply talking on the phone when it came on. I had great difficulty walking (had to move along a wall or a cabinet to remain standing), but I didn't vomit and I didn't have to call the paramedics. Even though I stopped taking the cipro a week ago Thursday, cipro side effects can occur up to a month or more after discontinuation. And as I am a dialysis patient, toxins are removed from my body more slowly than in a person with healthy kidneys.

The long and short of it is that I am envisioning a paramedic-free, ER-free, hospital-free vacation in Nova Scotia!

Keep Your Mind Guarded Like a City in Battle

From an ancient Chinese medicine text, "The Yellow Emperor's Canon on Internal Medicine," comes these sage words: "Keep your mind guarded like a city in battle." I fell in love with these words the first time I encountered them.

Since that encounter, I see myself as a guard stationed above the door to the castle. A stranger comes to the door and wants to be let in. I tell him that he can speak his mind, and I will then decide whether to grant him entrance. The stranger, of course, are ideas, beliefs, advice, theories, and opinions. The guard listens to all of them, just like I am free to listen to anything anyone says. I then must do the most important job: decide whether such an idea should take up residence in the castle or if it should be sent on its merry way.

As so often happens in life, there are two messengers at my gate with divergent messages. The one who has been there for decades are all the folks over the years who have been telling me that I am too independent and that men want to feel needed by a woman. My friend Beverly, with whom I confided on such matters, says that any man who sees me in one of my full-body orgasms will run for the hills, thinking that if I can get set off by a good kiss or even the touch of a hand, what need do I have for him! But whether it's low sexual threshold or traveling by myself or not falling all over every man who comes along, it's my independence that is keeping men away. That's been the prevailing sentiment. But yesterday Susie told me that I am needy and that this is keeping men away.

I have looked deeply at both these messages, and I have decided not to let either one of them enter my castle. I am proud of my resourcefulness and independence. I get a great sense of satisfaction when I can figure out how to fix something on my own. Of course, I would love to have a man in my life who would say, "Oh, honey, let me do that for you." Wow, that would be fantastic. But he's not here, and I'm not going to start compromising who I am at this late stage. As Tracy Chapman sang, "All I've got is my soul." Amen to that! True, the vast majority of men may be insecure, as Beverly is always telling me. The vast majority might give me a kiss and send me into a bout of quivering and writhing, and that might scare them. But I'm not interested in that kind of man. I'm interested in the kind of man who would see that and say, "Damn, honey, that's what you do with a kiss! I can't wait to see what happens when we take our clothes off!"

Is Sad the Same as Needy?

I was in the hospital Saturday and Sunday with another attack of sudden-onset vertigo. While there, I spoke with my friend Susie, the amazing gal who has just donated one of her kidneys to her friend's husband. Susie is a dynamic, playful, intelligent, big-busted, big-hearted woman. Truly remarkable. So when Susie says something, I take heed.

Susie says my posts express a neediness for a man, and that my neediness is keeping men away, that the sadness expressed in my posts are really the writings of a needy woman. As "needy" is not a word I would ever use to describe myself, I thought I had best take a good look at what Susie said.

True, I have been down at times. This last week or so has been very difficult, with bouts of weepiness for seemingly no reason, but I finally associated this with the antibiotic I was taking for the infection of my dialysis tube. I finished the regimen yesterday, and my mood has definitely improved. Other than such pharmaceutically induced blues, I really have been feeling remarkably well since March. (The first month of dialysis and the build-up to dialysis were very difficult, but then I would think they would be difficult for anyone. Surely, no one wants to be doing dialysis.)

I went back and reread the posts in which I share the strategies I have used over the years to boost or maintain my mood--saying aloud "I am loved, I am deeply loved," hugging myself, and going on "fun walks" in which I am very attentive to the beauty around me. In each of these posts I admitted that initially these practices did not bring me joy, that at first they highlighted my aloneness. But in every case, I ended with the deep and profound recognition that something much greater than the little self--call it God if you will--is sending me love. If someone only reads the first half of these posts, yes, I'd agree that they might be downers. But if you read to the end, you see that these are joyful experiences, certainly not desperate or needy.

When I was a child and a young adult and even a not-so-young adult, I was needy. I was in an uninterrupted state of depression and frequent withdrawal from the world. But that Heidi just doesn't exist any more. I had a shift several years ago, a shift that released food as a coping strategy, a particularly life-threatening coping strategy for a diabetic. This shift also included major changes in the way I perceived myself, my mission, and my relationship to other people. Basically, I decided to be happy, no matter what.

Now, of course, things happen in life that challenge that state of being, but these dark times are far less dark than they have been in the past, and they are much more short-lived. Darkness sometimes passes over me like a cold breeze, and I am sad or weepy for a minute or two, and then it is gone.

Susie not only prompted thinking about my own character, but about the wider question: Is sad the same as needy? I sure don't think so. To me, sad is to needy as poor is to moochy (or whatever the adjective is for being a moocher). Sad is personal, something you can keep to yourself, something you can indulge in when you're alone but go out into the world with a smile and a glow about you. One goes home to weep alone, just like one goes home to shit alone, to get out the impurities, so that one can go back into the world refreshed. Needy is 24/7. Sad is personal and can be contained so that it only effects the person who is sad. Others may know the sad person and even be good friends with her and yet always think of her as the happiest, sunniest person going. Needy is a drain on others; needy zaps the people it's around. Similarly, poor is a statement of fact: Someone is poor, he lives in a substandard dwelling, his clothes are worn, and he has few possessions. This is very different from a moocher, who is also poor but who begs, borrows, and cheats his way into getting others to give him a place to live or his next meal or a new set of clothes. He zaps others, whereas the poor man does not. The poor man accepts his state of being and lives as best he can within what has been given to him. So, definitely, all needy people are sad people, but the reverse is not true.

Wait List Update

Several developments in the wait list saga:

* Met with my Kaiser cardiologist, Dr. Phan, who said that my UCLA cardiologist, Dr. Van Herle, is leaving UCLA. I have been assigned a new cardiologist, Dr. Michael Lee--yes, another Michael, which I am taking as a good sign. I have called about an appointment with Dr. Lee, but have not yet secured one.

* I am holding off on the angiogram until after I meet with Dr. Lee. To recap, the angiogram uses a dye that is damaging to the kidneys. Furthermore, patients who are asymptomatic (no chest pain) fare worse with stent surgery (the end result of an angiogram) than without. Also, I have no guarantee that I'll be on the wait list if I do the stent surgery, so this is potentially a lose-lose-lose situation for me.

* Dr. Lee told Dr. Phan that he is willing to begin with a MUGA (Multiple Gated Acquistion) test, which will measure my heart's pumping ability or EF. This should clear up two inconsistent sets of data, one from the nuclear scan done about two months ago that indicated my EF was around 30 and the other from an echocardiogram, which showed an EF of 50, which is the low side of normal.

Months ago I had made plans to go to Canada, thinking that for sure the wait list would be decided by August. Alas, such is not the case. Most likely I will have to wait until after my return on Sept. 9 to undergo the MUGA and see Dr. Lee, so I may not have much news for a while.

Please see my left ventricle pumping like crazy, supplying my heart with all the blood and oxygen it needs to do its job perfectly, smoothly, and effortlessly.

I am Loved, I am Deeply Loved

Every once in a while, I need a boost, even if I have to supply it myself. I have written about the hug-myself and Spassiergang strategies in previous posts, and I'd like to share another means to maintain one's spirits.

Shortly after I began giving massages for a living, I began holding the thought that the person on my table is loved, deeply loved. I did not say this aloud, but I concentrated on these words and sent their power into the person's body and consciousness. As I did this, I visualized and then felt the loving energy of the universe enter my crown and travel to my heart and then down my arms and out my hands. As I held this thought, I, too, felt deeply loved.



This is a very powerful meditation, as it does not name the person, so the "you" who is deeply loved is both the client and me. In fact, the "you" seems to disappear until only love, pure and limitless and unspecified, remains.

Also, the lover is not named, so the love is not contingent upon this or that person's affections. "You are loved, you are deeply loved" is a statement of each and every person's birthright. In this way, it is far more powerful than "John loves Judy" or "John loves Jack." Love is, always and forever, though it's form may change.



Over the years, I have often whispered "I am loved, I am deeply loved" to myself when I was feeling left out of romantic love or when friends were hard to find. Sometimes this helped me feel better, and sometimes I just felt worse, berating myself for having to be the one to say these words to me.

But I kept saying them nonetheless, adopting the fake-it-until-you-make-it strategy. In time, I shifted in this respect as in many others, and the words turned from mockery into an expression of joyfulness. At such times, I enter into the space of the non-specific lover, and I feel love eminating from the moon and the trees and an evening breeze and a ray of sunshine. All are animated, and all seem to be saying, "Heidi, you are loved, you are deeply loved."

Then a few weeks ago, I had a beautiful insight. For decades I have been affirming that with every day that passes, the man who is matched to me is drawing ever closer. I have also asked that he visit me in my dreams and, by so doing, reach out to me in waking life. The insight that came to me when I was actually feeling quite a bit down about spending yet another year boyfriend- and husband-less was that the man who is matched to me--wherever he may be--deeply loves me. Just as I deeply love him and reach out to him through my prayers and affirmations and dreams, and by so doing, deeply love him, so, too, is he reaching out to me and loving me through his prayers, affirmations, and dreams. What a fascinating kind of love that is! Worth a short story, I'd say.

Feeling a Little Down on my Birthday

Rasputin is chewing on a bone, and I'm putting off some editing that I've been putting off for weeks now. After completing this post, I have to get at it. That's how I'm spending this Friday night, which happens to be my birthday.

I am grateful to those friends who remembered the day, calling me with well wishes, posting Facebook comments, or sending a card. And dear Georgette, the Floridian pixie, Photoshopped me as a flirtatous faerie, which is now dangling from my living-room ceiling fan.

Despite the kindness of these friends, I'm feeling a little down, not much, just a little. I no longer stay down, as I did when I was a child or as I did until about six years ago when a lot of things shifted for me. And my downs are not so deep as they once were. Sometimes I feel down for only a few minutes now. Today it's been a few minutes here and there.

Birthdays, like holidays, help us mark the year. They're a time for us to reflect on what we've experienced during the past 12 months and on those things that seem ever-elusive. New Year's Eve, for example, has often been a down time for me, not just because I don't have a date (the first and last time that happened was 1976 with Rod at the Milwaukee Performing Arts Center), but that I think, "Another year and still no love to share it with."

I wonder when I will be with a love who will remember my birthday, go to sleep beside me, wake up next to me, kiss the back of my neck, and rub whatever he can of my taped-up belly. I wonder when I'll go on B&B weekends with a lover, when I'll be invited to parties at which everyone else is in a couple and I will be too, when I'll have someone to give me a ride home from the mechanic, when I'll find a man who actually wants to have sex and is capable of doing something in bed.

I was referred by the Renal Support Network to an article about a PD patient who was very reluctant to begin dialysis but received a transplant a few years back and is now having a wonderful life with her husband. This article is meant to inspire and encourage, but it has not done that for me. All the craziness I have been going through to get on the damn transplant wait list, and the craziness continues. Where will it end, and will it end with me on the wait list or simply having gone through all this drama just to be denied? And the loving, supportive husband--where is he? Whenever you read of someone who has faced tremendous health challenges and has overcome them, there is always a loving, supportive spouse. When do I get mine?

As I wrote these words, little Rasputin came up to me and climbed onto my lap. I am very grateful that he has been sent from heaven to remind me that I am richly deserving of the very best love.

Wait List Update

Thanks to everyone who has been praying on my behalf. Things are at a crossroads. It's far more complicated than this, but basically UCLA wants me to undergo another angiogram and possibly stent surgery before approving me for the wait list; however, the dye used for the angiogram can damage the kidneys, and I don't currently have any cardiac symptoms, so I feel the surgery is unnecessary.

Also, having the surgery does not guarantee I'll be placed on the list. So, my nephrologist is talking to the director of the transplant team to try to get him pinned down: What does he need to see with my heart to get me on the list? If the surgery is just as a preventative, I'm not interested in taking the risk to my kidneys. But if it would ensure my placement on the list, I'd be more agreeable.

So, at the moment, that's where things stand. Thanks so much for your continued support and affirmation. I am affirming that, if the angiogram is done, it will show that I have a completely new and healthy heart, as I have been telling my doctors for months. That it is better than it's ever been. I ask for you to see the same. Thanks so much.

That Delicious Feeling of a Steel Band Being Pulled Tight Across my Chest

Every once in a great while, I meet a man who excites me. In the past almost 10 years--since my last encounter with Mike--only seven men have given me that delicious feeling of a steel band being pulled tight across my chest, that crazy pain in my groin, that electricity shooting through my body.

One was a one-time massage client, my very last client of the day on my last day at a chiropractor's office back in 2000. An instant attraction. We met later for a long, fancy dinner. He was such a Southern gentleman, giving me compliments at every turn. Such sexual tension, but alas, he was married and lived in Atlanta. We almost kissed, but knew that if we did that, we'd do everything. I never saw or heard from him again.

Then there was the 21-year-old surfer. We had three fantastic bouts of kisses, one on a boat. One of the most erotic times I've ever had with anyone was fully clothed with him at an art museum. We took on other personalities. I was Svetlana, complete with a Russian accent, a cynical attitude, and black back-seamed nylons. He was a fish affecienado who was confused about his sexuality. Our favorite game outside the museum was me giving him verbal instructions as to how he was to adjust the passenger-side mirror on my van. That's the best: When there's the thinnest veil of propriety, when an outside observer might think that what we're doing and saying is completely on the up and up, perfectly normal, above board. And yet, to us, it's charged with sex. I told him he should relax about the age difference, think of me as a priestess in ancient Greece who would invite young men to the temple to be schooled in the ways of love. Though he told his parents of his feelings for me, when he found out I was 44 and not the late 30s he had suspected, that was too much for him.

With the third man I had a few amazing times, but the last was ho-hum. He is someone with so many commitments, personal and career, that he never had more than a few hours every six months or so to give me.

Charlie I've written about previously. We had some wonderful kisses in Flagstaff on one October afternoon in 2004, but he, too, was married, and I never saw him again.

When I danced with a stranger at a supper club late last year, I felt that sweet, agonizing pain in my groin. We exchanged numbers and were supposed to get together the following weekend, but he flaked. My friend Bev said he must have been married too.

The email-and-phone trysts with a craigslist guy nearly drove me insane with desire last summer. We never met in the flesh.

And lately I've had a crush on someone. The sexual tension goes both ways but most likely will never be voiced or acted upon because the societal roles we play make manifestation problematic. As with the young surfer, there is that intriguing and delicious duality of propriety and legitimate business vs. sexual undertones. But as long as nothing physical occurs, it's a feeling I can take out from time to time, as I would a book from a shelf. No harm in that.

Sure would be wonderful to have this feeling for someone who is available and who feels the same for me. Wouldn't that be something! But that seems like a fairyland, a world I heard about some time long ago in a dream. All the things I have been imagining! All the things I've been storing up since my days with Mike! WOW, I am so ready to let all that loose!

But it's possible that, like good health, I will have to wait until my next lifetime to actualize all the passion, love, intimacy, wonder, and craziness I've been stockpiling all these many years because letting it out with someone who doesn't thrill me would be so not happening, so dead. I have friends who tell me they don't aspire to feel the steel band being pulled tightly across their chests. That someone who is nice and they get along with is good enough. Well, that's not good enough for me. I'm too much of a romantic. I'm not interested in settling.

Rasputin, the Healer

Though Rasputin the historical figure is often given a bad rap, he had a healing effect on Alexis, the only son of Czar Nicholas and Czarina Alexandra of Russia. After the birth of four daughters, the royal couple was elated when Alexis, the long-awaited heir to the throne, was born. Tragically, he was also a hemophiliac. Rasputin, however, was able to still Alexis's episodes of bleeding. How he did this is not known. Some figure he was a hypnotist, but there is little to support this theory. Rasputin was decidedly a mystic, and I'm going to leave it at that.

Like his namesake, my little Rasputin has definitely had a healing effect on me. Approximately 10 years ago, my heart was literally and figuratively broken. It is then that Mike, the big love of my life, discarded me, and it is then that I developed cardiac symptoms.



I have done my damnest to find a new boyfriend. I take care of my looks, I dress nicely, I talk with guys, I go out on every first date I'm offered, I suggest coffee for those who may be too shy to ask me, I have belonged to at least a half dozen dating sites. And yet, love has eluded me. For this past decade I have slept alone every night.

And then just this past week, Rasputin became the first creature to fall asleep with me. I was sitting in the recliner, and he rested his little head against my chest and his little body against my tummy, and we both fell asleep. So sweet. How I wish I could experience that sweet feeling with a man, that sweetness of falling asleep with someone I love.

Other times Rasputin has sat on my lap with his head over my heart, and his back legs have twitched. This made me think of how, during a massage, I will sometimes flush out the pain or the psychic junk in a client by running my hand very quickly over the troubled area, unruffling the obstruction, clearing it from the body. I feel Rasputin has been doing this for me, clearing my body, and most especially my heart, of any obstructions that have been weighing it down.

Ever since Rasputin has come to live with us, I have had no chest pain. Though the chest pain and pressure had substantially decreased since I started dialysis, they were still there, primarily when I would walk any more than a short distance. Since Rasputin, I have had no pain upon walking or exercising in any other way. In fact, my heart does not keep me from doing anything I would like to do.

What's more, for the first time in 10 years, I am able to sleep on my side. I had always been a side sleeper, but upon the onset of chest pain, I was unable to do so because this put too much weight on my heart. I had to train myself to sleep on my back. Every once in a while I would attempt to lie on my side, but I could only do this for a minute or less before the constriction became unbearable. Now I can spend the whole night on my side if I want.

My friend Araia had always told me that a dog that really loves a human can serve as a conduit for healing the human's ailments. I know this is happening. My little Rasputin is healing my heart.

Definitely a Friendly Neighborhood

On Saturday evening, I was out walking with Rasputin and friend Armando. I was wearing a fitted, hot-pink skirt, a white blouse, and pink flats and was carrying a matching pink purse. I always get plenty of attention when I wear this skirt, and Saturday evening was no exception.

A few blocks from the ocean, we came across a BBQ. About a dozen adults and a few small children were spilling out of an apartment onto the front steps and the sidewalk. The adults held beers, and one guy was grilling on a Webber set up in the grassy strip betweeen the sidewalk and the street. Because this party had no front yard, as the steps to the front door of the apartment came right down to the sidewalk, we had to pass through them to get to the ocean.

One woman called out to us as we passed, "I love your skirt!"

On the way back, we stopped to talk. The same woman came up to me, bottle in hand, with two small children clamoring about her knees. She had long, black hair and really gorgeous tatoos of flowers and birds up both arms. She wore a low-cut sun dress that showed off her ample breasts. She had definitely had a bit to drink.

She cooed, "Oh, I love your skirt. Hot pink. Where did you get it?" Goodwill, I told her. Then she moved closer. "Can I touch your butt?" she asked. Sure, go for it. She rubbed my butt with her open palm. As this is a silk-lined skirt, this felt very nice.

"Oh, what an ass!" she declared. "You should all feel this ass!"

The men looked at me, then at Armando. As he said later, if he had not been there, they probably would have taken turns.

More friends of the birthday girl--you guessed it, the brunette with the tatoos--arrived, and she went to greet them, leaving my butt behind.

I just laughed and smiled about her all the way home. What a friendly neighborhood we live in!

The next day, my son and I passed the party apartment on our evening walk with Rasputin. Two hungover men were sitting on the steps. "How late did the party go?" I asked, reminding them that I was the gal with the nice ass. "It's still going on for some," one said, "and it'll be going on until Tuesday."

Wow, four days of partying! If they do that for all of the adults' birthdays, that's 48 days of partying a year just there. Then add all the holidays, and you begin to wonder how these folks make their drinking money.

Rasputin and I Are Proud of Our Pee

Rasputin and I are proud of our pee. There's no getting around the fact. Unlike most people, who are just happy to relieve themselves once in a while, relieving himself is not Rasputin's aim. Rather, he marks trees, fenceposts, and sign poles with his urine, constantly amazing me by always having some to spare for the next landmark. He is not into blowing his stash in one place. No sir, it's far too precious!

I, too, am proud of my pee, but for a different reason. Each time I pee, I say a big thank you, as peeing means that my kidneys are still doing something. They haven't completely shut down.

Granted, I don't pee nearly as much as I used to, since most of my fluids are expelled during dialysis. But the mere fact that I do pee is always cause for a little celebration, even though it's just me who's celebrating.

Anyone who's reading this, take note. The next time you pee, say a little thank you. Your kidneys are working! This is a great gift.

By Any Chance, Are Your Relatives From Minnesota?

Though my new apartment is a truly happy and sunny place, and though I really like it a whole bunch, it does not have an on-site washer and dryer. So, I'm back to the laundromat.

Yesterday I stepped foot in one that's a few blocks from home. Shortly after I arrived, a man approached me. "By any chance, are your relatives from Minnesota?" he asked. I smiled widely and replied, "Well, as a matter of fact, they are."

My mother was born on a farm in southern Minnesota, and most of my cousins and their kids are still living in the state.

This man, who was named Ray, thought I looked Swedish, and as a Swedish woman he'd met years ago--maybe decades ago--had been from Minnesota, he figured I might be too.

Ray wondered if I were familiar with Rush, Illinois, a town about two and a half hours from Chicago. I believe he had kept Rush in his consciousness for decades because of another gal who had hailed from there. Sad to say, I had never heard of Rush.

Ray was quite a character. Probably 85 if he was a day, wearing a sea captain's hat and pants that were way too big for him.

Turns out, Ray wss into maps. When I told my son this, he quipped, "Oh, good, so now that makes two of you."

At first Ray and I drew maps in the air for each other. I was sure that Iowa is west of the Mississippi, but Ray needed some convincing. He also needed a little help with the positions of Wisconsin, Minnesota, and Illinois. Finally, he came around.

He said if I liked maps, he had something to show me. He pulled a Lyndon LaRouche magazine from the rack on the wall, then paused before opening it. "This publication is so right wing," he said, "I thought I might be going insane reading it." That's always been my experience of LaRouche materials and his fanatical followers.

Amidst all the political hoopla and prophesies of doom was an article on the the great train adventures of the world. Ray pointed to a map of Europe and confessed that he would like to take the Trans-Siberian Railroad some day. Wow, good for him to keep the dreams coming!

The conversation drifted to my former home of Point Arena in Mendocino County. Ray had lived in Los Angeles for 33 years, but he often went on road trips on the weekends and during his vacations. He was very familiar with Hwy 1 north of San Francisco. He nodded and took in a deep breath, remembering the beauty he had apprehended there.

All about us, solitary people went about their business, loading washers and dryers with coins and folding clothes, while Ray and I swapped stories and had a few laughs. So interesting how often this happens to me at laundramats, something I had forgotten until yesterday. So often over the years people have approached me in laundromats and told me their stories, like the woman who related the very complicated case of her run-in with city authorities or the young traveling salesman who had lived in 26 states as an adult and as many foster homes as a child.

This is why, once again, I am reminded of the truth: "There is nothing good or bad, but thinking makes it so." Many would say it's too bad that I don't have use of a washer and dryer in the building where I live or that I don't own a washer and dryer in my own home. But these are probably the same people who wouldn't have given Ray the time of day. Look how much I have gained from what many would label a loss.

Affirmation of Blessed Relationship

When I was going through some papers, I happened upon a folder I had opened March 26, 1998. I remember the day very clearly. I was hanging out at a McDonald's, reading and writing the day away as I waited for my van to be fixed. I had called my boyfriend Mike in Northern California, and he had said something cruel.

This is how Mike often operated: He and I would have a beautiful, intimate time together, a time in which you wouldn't think two people could possibly be any closer, and he would follow up by saying something dismissive, insensitive, and cruel. Years later this behavior was explained to me: Mike had low self-worth and was intimidated by me. In one sense, he wanted very much to be with me, and in another sense, it terrified him. Plus, he was an alcoholic, though he only drank twice in the four years I was with him. He nonetheless exhibited alcoholic behavior, i.e. destroying everything good in his life and fluctuating between delusions of grandeur and self-deprecation. Mike wanted the emotional and physical intimacy I offered, but he felt unworthy of it, so he made himself unworthy.

I can't remember what he said, only that it hurt me very deeply. I decided to sit right down at McDonald's and write down exactly what I wanted in a relationship. I wrote several versions that day, revising criteria, adding and modifying and recasting, until I finally hit upon a final draft. Then for more than two years, until April 13, 2000, I rewrote the affirmation, each time reaffirming what I wanted. In the folder were more than 100 handwritten and typed copies of the affirmation.

Looking at it almost a decade later, I would say that this is still what I want. Here goes, one last time, then I'm tossing the foler, releasing it completely to God's hands:


Affirmation of Blessed Relationship

Formulated 3/26/98

I am richly deserving of holy relationship with a God/dess-centered, honest, moral, loving, generous, sensitive, passionate, romantic, tantric-adept, supportive, understanding, responsible, mature, financially secure, unpretentious, emotionally healthy, physically independent, life-affirming, optimistic, fun-loving, playful, adventuresome, attractive, intelligent, humorous,. compassionate, faithful, “present,” heterosexual, “available” man of compatible age, education, income, interests, outlook and locale.

Holding to the truth that God/dess deeply loves me, wants me to be happy and fulfilled, and gently guides my path, I will attract this man into my life. I will immediately recognize him as the treasure I have already joined with in my soul. He will immediately recognize me as the treasure who has come into his life through prayer, since he has been awaiting my arrival too. He will know me, since I will embody those traits I seek in him, my soulmate, my beloved—traits he has been seeking in his soulmate, his beloved, the woman he will come to know as Heidi, the outer manifestation of his inner quest.

We will enter into lifelong commitment, bonds of strange and sacred intimacy, a shared vision of holy purpose, with joyfulness, courage and whole-hearted openness, celebrating each night and day the great and blessed gift God/dess has granted us through and with this love.

All this will come to pass, beautifully, magically, effortlessly, and very soon.

Amen!