Saturday, December 27, 2008

985 Down

In July of 2006, with the diagnosis of Wegener’s still fresh on the page, we discovered both my legs and my lungs were filled with an uncountable number of blood clots. Well, one was easy to count—it ran the entire length of my right thigh and was the thickness of my pinky.

(Though I read all my medical reports and viewed all the other diagnostic films along the way, I would not find the courage to look at the images of that CT scan for almost 2 years. When I finally did, I couldn’t stop crying. It sounds cliché to say it was there in black and white. But it’s true—it was physical evidence that I had not dreamed that terrible nightmare, and also that I was a walking miracle. Not one of those clots went to my brain or my heart, though most had lived in me for 3 weeks by the time they were discovered.)

So, with lungs still hemorrhaging, I began blood thinners for the clots. My doctor was an ICU veteran who’d never had to do such a thing before and was sure I’d never survive it. But I had the ultimate ace in my corner : Jetsunma Ahkon Lhamo, my lama. Through her extraordinary prayers, she kept me alive and intact. She asked our sangha to dedicate their prayers to me and to circumambulate the stupas on my behalf. Even the doctors acknowledged they had no medical explanation for how I made it through.

Within a couple months I got new clots and had to switch from coumadin to daily heparin injections. First thing every morning and last thing every night, I gave myself the shot in my abdomen. It’s famously painful. It didn’t matter how I felt that day—migraine, vomiting, too weak to stand, in complete emotional collapse, all of the above—the needle had to go in. I was thrilled to eventually reduce it to one shot per day.

Last week my new hematologist at Johns Hopkins said I’ll have to stay on blood thinners the rest of my life. I don’t know why it hit so hard to hear that. I mean, Wegener’s is not curable either. Yet this was the first time my ears heard, “For life.” It’s a place I’ll sit for a day or two, but I won’t set down roots in it. Nothing is permanent, after all.

Besides, we had decisions to make. I’ve already been on the injections too long. They leach bone at an alarming rate and at $4,000 a month, they leach my health insurance, too. So I’m back to coumadin. No painful shot, but it makes life more difficult in ways the shot did not.

It’s hard to know whether—or what—to celebrate.

Looking at karma purely in a linear way, right now I guess I’m just glad to have 985 spears behind me.

Thursday, December 25, 2008

My Christmas Miracle

The Buddha taught that it’s a fundamental delusion that I perceive myself to be separate from you. If that’s a new, insane or just plain theoretical statement to you, bear with me as I rev up my dormant brain cell and attempt an explanation that won’t embarrass me.

Though the Buddha taught this 2,500 years ago, physicists are trying to catch up. We’ve learned we’re actually packages of molecules which can be broken down into atoms, which can be broken down into subatomic particles. (For now we don’t need to go further than that, which is okay with me since I’m already in up to my neck. Don’t try to lure me into a discussion of quarks and leptons either, unless you read yesterday’s post and you have a bon-bon on hand to revive me.)

It turns out that while you and I perceive ourselves to be quite solid, we’re actually just clouds of sub-atomic particles held together by force fields. These clouds contain more space than particles. The force field of one particle cloud influences the force field of the other. If I sit next to you, it changes the behavior of both of our clouds. Moving towards or away from each other changes our clouds, too. In the end, there is nothing I can do “to” you that does not affect me equally.

At some point, it becomes impossible to distinguish your particle cloud from mine. Is that your electron way out there, or mine? (Which begs the question: Are our subatomic particles just as graspy as we are? “That’s my quark!” “No it isn’t!” “Is too!” “Give it back or I’m telling Mom!”) And that enormous amount of space in-between all those particles—whose is it?

If you have kids that fight over their space in the back seat, you can use this physics lesson. It’ll put them right to sleep. Problem solved.

So I got up this morning and scanned The father of a family loses his job due to illness, which begins a domino-effect of financial difficulties. You can feel the fear clamp down on them as their bills roll in, the car breaks down, a foreclosure notice arrives.

Then a friend steps in and posts the family’s story on her blog, asking for donations. The blog link spreads across America. People are moved to help. The money rolls in quickly : enough to fix the car, enough to get current on the mortgage. A tv station runs the story and as a result, the father is offered a job. Others join in. An unemployed woman with no hope of getting a job gives $1. A woman without a car walks to her grocery store carrying her offering of a jar filled with change. Finally, a little boy knocks on the family’s door and hands the father a $5 bill, “Here you go, mister.”

Their miracle, my miracle, whatever.

Tuesday, December 23, 2008

Miss Special Eats Bon-Bons

(I know, I know. The title of this post sounds like a headline about a final rift between two spoiled cats.)

When I’m not in the hospital (which hasn’t happened for a year now) or in obvious agony (which hasn’t happened for 3 months now), people often ask me, “So what do you do all day since you’re not working?” I’m going to ignore the people who ask with an undercurrent of, “So what do you do, lay around and eat bon-bons all day?” and do my best to answer those who honestly wonder.

Basically, you can divide up my activities into 3 categories : 1) Activities of Daily Living (ADL’s is the technical term), 2) Doctor visits/ procedures, and 3) Pulling out (what remains of) my hair.

Let’t talk ADL’s. This is stuff like buying groceries, paying bills, personal care. (Please do not be alarmed. I am not going to tell you about my potty breaks.) What healthy people don’t know is that chronic illness takes so much energy that everything becomes complicated. Showering means deciding ahead of time if I can stand long enough, if I can take the hot water without it completely overheating me, if I will have the strength to actually wash myself, if I will have any strength left at the end for anything else, or if that one ADL will land me in bed for hours. Or the whole day. It’s crazy.

A woman with lupus wrote a wonderful essay about this called "The Spoon Theory," which you are required to read. There will be a pop quiz in a future post.

(My Buddhist friends are wondering, “Um, Ani Sangye? I don’t see your daily practice on your list. What’s up with that?” For the purpose of this discussion, I’d categorize it as an ADL.)

Yesterday’s post gave some insight into the time-consuming world of doctor visits and procedures.

I spend what remains of my life pulling out the bits of hair left on my head. Think I’m overreacting? Let me take you through just one of the many current issues and let’s see how you score at the end :

I have private health insurance, which I had long before I got sick. It’s excellent insurance. Even though it’s pricey, it’s nothing compared to my medical expenses. Now with a diagnosis like Wegener’s, no one is ever going to insure me again if I lose this policy, right? Giving up my private insurance is out of the question. However, after two years on Disability the feds assume I’m permanently disabled, so they recently enrolled me in Medicare. I plan on working again at some point. Once I return to work and am able to support myself, I’ll lose Medicare.

Now, when you don’t work for 2.5 years, you get a little, well, poor. So the state kicks in and pays my Medicare premium and co-pays with a program called QMB. If I didn’t have private health insurance, it would also pay the 20% that Medicare doesn’t cover. In fact, no one can really answer how the QMB interacts with Medicare and private insurance. The big problem is right around the corner. My private insurance has a huge annual deductible. Medicare doesn’t cover that. And nobody—despite making calls that burned through (I’m not kidding) 300 cell phone minutes in 3 weeks—can tell me if the QMB program will help. Doctors offices are stumped. One doctor’s insurance person told me today, “You’re unheard of.” I have a hard time believing that, but okay. I'm so special.

So, who’s got a Magic 8 Ball? What’s gonna happen in January when I become a billing Hot Potato?

This concludes the test.

Scoring :
“Pass” if you wanted to run away or cry for Mommy halfway through.
“Fail” if you think it’s no big deal, easy fix. (Unless you DO know how to fix it, then “Pass.”)

I feel faint. Quick—someone bring me a bon-bon.

Saturday, December 20, 2008

Buddhas in the Waiting Room

When you get a serious illness, you can expect to spend an inordinate amount of time in various waiting rooms—doctors’ offices, emergency rooms, and outpatient services, not to mention places like Social Security and state assistance offices.

Yesterday I spent six hours back at Johns Hopkins for one test and one doctor appointment. This entailed a long walk to the test department, a 30-minute wait, a one-hour test (thank goodness it was done laying down), a wait of one hour between appointments, a much longer walk in the cold, and a whopping 3-hour wait for the doctor to walk into my room.

It was enough to leave me weeping uncontrollably—so far beyond “spent” I cannot find words—and utterly overwhelmed as more and more symptoms exploded in my body with each passing minute. The doctor I ultimately saw was surprisingly kind in regards to my case, yet could not summon the ability to mention (much less apologize for) keeping me waiting so long, even though I couldn’t stop sobbing into lousy paper towels through the entire appointment. The closest he came was, “I’m sorry you’ve had such a bad day.”


I’ve lived this scenario more times than I can count. Once it becomes clear that politeness has no barter, I’ve reacted—whether inwardly or outwardly— in every possible way through anger, sulking, pleading, resentment, indignation, indifference or resignation. None of which changes anything. The doctor still cruises room to room, the clock keeps ticking at exactly the same rate. Eventually it all ends and you go home.

Of course I’m not alone. I watch as other patients ride the same rollercoaster. You can tell the ones who are brand new to it by the utter shock in their eyes. And you can tell the ones who are bottoming out by the utter desperation in theirs. It’s all suffering, and it’s wholly unnecessary.

Even on the days when I’m barely hanging on my heart breaks for those around me--slumped in chairs that do not accommodate bodies with troubled parts, unable to wait but unwilling to leave, distilling surrender from resignation.

Sunday, December 14, 2008

Insult, No Injury

It seems a lot of people have had enough these days—enough lies, enough killing, enough lying about killing. Change is in the air across this small planet. President Bush has 37 days left in office, which is 53,280 minutes too many for a lot of people.

He spent today in Iraq visiting troops for the last time and conducting a final news conference. As he uttered one more lie (“The decisively on its way to being won.”) a reporter stood up and hurled his two shoes at President Bush. Mr. Bush ducked once, then again, with agility I didn’t know he had.

NPR explained, “In Iraqi culture, throwing shoes at someone is a sign of contempt.” I’d say we all got the point, without the cultural interpretation. I admit, I had a good laugh watching the clip, since I already knew he wasn’t harmed. It was just shoes, after all.

To be sure, violence is never the solution, no matter how tempting. Ultimately it creates more of the same, more suffering. Tonight there is a shoeless man in Iraq facing the legal consequences of his actions. And wherever he is in the world, President Bush can’t be feeling too good, either. He may strut around, but deep inside he knows he ducked shoes today.

Thursday, December 11, 2008

Happy Birthday to…Me?

Today is one of those curious days called my birthday. (Mine isn’t any more curious than anyone else’s, it’s just a good time to bring up the topic.) Everything I came into the world with, and every natural part of me that has grown or developed since then, is now officially one year older and as of today must be recognized as such. Isn’t that odd? I mean, I’m just toodling along one day after the next, and all of a sudden I’m supposed to realize that I have changed. Ba-da-bing. Completely ignoring the biological fact that many parts of me have died or are dying, and many parts of me are brand new or are just getting ready to sprout.

So whose birthday is it, anyway? Which part of me has been here the whole time, growing one year older all of a sudden every December 11th?

I lived in Spain some years ago and just love what they do on their birthdays. Instead of receiving presents, they give presents to all their friends. It was like a trip to upside-down world. Children’s birthday parties are big give-away sessions. I like to ponder how that way of celebrating one’s special day shapes their culture and their view of the world. Because what’s special about you becomes what you give, not what you get.

In honor of Spaniards getting it totally right, I have a birthday wish to give to you : May you bring only kindness to all those you encounter today.

Tuesday, December 9, 2008

Just Throw Me in A Pine Box and Bury Me in the Backyard highlighted an article at the top of their main page today. Within moments of reading it, I was overcome with laughter. Now before I reveal the article, some background about me is in order.

Long before I got ordained as a Buddhist nun, I was content with living a simple life-- earning a reasonable amount of money, driving a small car from my small house to my small office, and letting nature take its course as it pertained to hair color, skin tone and the physical results of living in the earth's gravitational field.

I'm just not a fancy girl. So once I became ordained and had to leave behind the world of fashion, it was a pretty short goodbye.

If you had asked me then about how I'd like to look when I die, I probably would've done the exact same thing as I would today : burst out laughing. I would not be able to resist making a face with my tongue hanging out and eyes rolled up-- a cartoon imitation of someone dropping dead. Of course, it would come with an "Aaaaaagh" sound effect, because I'm Greek, and Greeks like drama.

Apparently, I am becoming more of a minority as we speak. The MSNBC article describes how more and more people are asking for cosmetic surgery for their funeral. Here's the entire article, but let's enjoy some of it together.

"People used to say, just throw me in a pine box and bury me in the back yard," says Mark Duffey, president and CEO of Everest Funeral, a national funeral planning and concierge service. "But that’s all changing. Now people want to be remembered. A funeral is their last major event and they want to look good for it."

These recent cosmetic concerns come as no surprise to Dr. Anthony Youn, a Michigan-based plastic surgeon who’s practiced in Beverly Hills, Calif., and appeared on the television show "Dr. 90210."

“Society is unfortunately getting more and more vain as time goes on,” says Youn. “Fifty years ago, no one would have thought about how good they’re going to look when they die, but now that’s probably something the ‘Real Housewives of Orange County’ talk about. If they die
[My note : IF they die???!!], they want to look good in their casket. It’ll be one last time to show off their new outfit and their plumped lips.”

But here's the best part :
Oddly enough, some of those who’ve had work done in life may undergo one last procedure after death.

“I require that the mortuary remove any kind of silicone implant before the body is delivered here for cremation,” says Aida Bobadilla, manager of the Los Angeles Odd Fellows Cemetery and Crematorium. “Whether it’s in the breast or the calf or the bicep or the cheek or wherever. Silicone implants will explode. They’re like little bombs.”

“Our crematorium wants to know if the deceased has them,” says Vigliante. “And then we have to get permission from the family to have them removed. As boomers age [Me again : BOOMERS? At last the code word is revealed!], we’re going to be seeing more and more of this.”

Okay, if you're like me you're probably doubled over laughing at the thought of crematoriums all over America blowing sky high because someone was too vain to admit to having had cosmetic surgery.

So what should we-- a moral and responsible society-- do to protect ourselves? Collect pine boards and start digging?

Friday, December 5, 2008

What It Is

The name of this blog has lived in my mind for 20 years now. I was a Peace Corps Volunteer in Ghana, West Africa, where top-heavy transport vehicles called "lorries" carry all types of live animals dangling above the passengers. Ghanaians paint names across the front of their lorries. "Sweet Not Always" used to come careening down the dirt road in my town scattering chickens, goats and children like billiard balls. The children laughed as they ran, leaping open sewers or flattening themselves against the buildings. It was all great fun for them, outrunning death and bursting into breathless giggles when they saw faces like mine grow (even more) pale with shock.

I always knew I'd find a use for that lorry name.

About 3 years ago, my life--which had been sailing along with the typical smattering of drama-- took a left turn onto You Gotta Be Kiddin' Me Street. It began with thumb pain and ended up 8 months later with me being driven to the ER by a 6-foot-something doctor folded ridiculously into the driver's seat of my tiny Subaru. As I gasped for breath, he informed me that I had just been diagnosed with a rare autoimmune disease called Wegener's Granulomatosis. Though it is deadly if not treated, the treatment he laid out was brutal, and I actually laughed out loud at what seemed an absurd exchange. Within a half hour, separate IV's dripped blood and steroids into me, and I was granted membership into the exclusive club of People With Weird Diseases.

It's pretty bad, I won't deny it. Some days it gets on top of me. Other days I'm able to give it a good Whop! on the head and enjoy life anyway. But the moments where I can forget about it altogether are few and far between. The symptoms are too widespread and numerous to be ignored. At least right now. There are benefits to living with a day-to-day prognosis. You delight in good things more. Every night before I cover his cage, I look my little bird right in the eye, and allow the floodgates of my heart to open with gratitude for having heard his sweet voice that day.

At this point, depending on your own life circumstances, you might be fearing or hoping that this blog is going to be all about Wegener's! Though it's permanently changed my view in life, it's not the whole of me. This blog is about all the things I care about-- Buddhism, animals, my companion animals, humor, politics, other cultures, global consciousness, wholistic health, living green, and sure, living with a rare chronic illness. All kinds of things. I don't know how it'll shake out. Might be sweet. Maybe not always!