Wednesday, July 04, 2007

Dog Is Great, Dog Is Good

Thanks so much everyone for the kind supportive comments after my port debacle yesterday. I'm feeling better today. It's amazing--and a little alarming--how much comfort and joy I derive from my blog and my dogs. Alarming because I worry that I'm in increasingly deep doo-doo danger of becoming one of those crazy old dog ladies who totally eschews non-virtual human companionship.

When I came home from the hospital yesterday I was totally exhausted, angry, defeated, and on the verge of tears. But my dogs were just so unabashedly overjoyed to see me! They didn't berate me for not being assertive enough, they didn't blame me for being such a loser, they didn't yell at me for crying, they didn't threaten to leave me because my life is too fucked up. And hey, neither did y'all!

My dogs have never once recoiled with repulsion at the sight of my port, and they don't remind me daily that I'm no longer attractive. They were just there for me yesterday when I needed them, happy and waggy and lovey-dovey, comforting me with their silly goofy grins and big wet kisses. Not for one minute were they critical or judgmental or irritated at my many failings. Why the hell is it so hard for some people to be like that?


The port that won't go away

Anyway, the dogs and the kind comments got me through a rough night, and today I'm feeling ok again. So I still didn't get my hideous port removed. But at least it wasn't a life-threatening failure on the part of the System. And I hate to complain because I know many of the other folks waiting with me yesterday had bigger hardships than I did. Quite a few of them had to leave after waiting six hours or more, before they even saw a doctor. Some had obligations like picking up kids at daycare; others had to catch the last bus because if they missed it they'd have no way to get home. One woman had to leave because she had her 36-year-old Down syndrome daughter in tow and the daughter was starting to have a serious meltdown from the long crowded wait.

And by leaving these people totally forfeited their appointment, so they'll have to wait several months for another one. Which means they'll have no choice but to go that hellhole of an emergency room to wait 12-15 hours if they need help with infected incisions or excruciatingly painful stumps.

This system totally sucks.

Speaking of which, how many of y'all have seen Sicko? I haven't, because as I said in comments, it will probably get to Netflix long before it's ever shown in a theater within 90 miles of Deep Inferno. But I've been hoovering reviews and really looking forward to the various dialogs it's bound to open. Though I know it's inevitably going to unleash an angry backlash from the fully insured who are afraid that any improvements for the less fortunate will mean they might have to relinquish some of their healthcare privileges.

And sure enough. A couple of days ago some folks were discussing Sicko on one of the online lymphoma boards I sometimes frequent. I was pretty shaken by some of the comments. For example, I quote:

"I have no desire to see it. The health care in the US is the best in the world. We are free to seek the opinions and treatment from any institution anywhere. Many here can attest to seeking opinions from sources in MD anderson, Mayo, Sini, and the list goes on. People from other contries come here when their state controlled Health care fails them.

I know I come across as a hard ass on some threads but I honestly have compassion for the terible choices we all face. The money it takes to develop the drugs we take are stagering. The drug companies test 1000s of drugs to find 1 that actually works. The cost to develop those drugs have to come from the users of those drugs. Thats the free market - profit incintive causes better drugs to be developed plain and simple.

People will pay for new cars, cable TV, Cell phones, vacations, starbuck coffee, ... and claim Health insurance is too much. But the fact is they see that the cost benifit of health insurance was just too far down on their list. Many (not all) are uninusred due to choice."
[sic]


Sheesh. I guarantee you the miserable throng of uninsured people crammed in that drab airless waiting room at Our Lady of the Damned yesterday were not sipping raspberry mocha frappuccinos while they jingled their BMW keys and discussed upcoming vacations to the French Riviera.

What the hell planet is this person from? Dude: try being over 50, self-employed, low-income, with several preexisting conditions, and see if you can afford the skyrocketing premiums. And then there's the whole mess of being underinsured. Even if I'd been able to afford to hang on to the shitty little health insurance policy I had managed to qualify and pay through the nose for for five years until 18 months before I got sick, it wouldn't have covered more than maybe an eighth of my cancer expenses. I would still have ended up bankrupt.

Even on lymphoma "support" boards, there is contempt for the less fortunate. Or at best we're invisible. The moderator of one board routinely greets newcomers with advice to seek out top lymphoma specialists at top cancer centers, without a thought to those who can't possibly afford it. Not to mention those who can barely manage to arrange transportation to and from the nearest public charity hospital.

And whenever the topic turns to statistics and prognostics on one of the cancer boards, somebody is bound to trot out Steven Jay Gould's famous essay, The Median Is Not The Message. Gould survived for 20 years after he was given 8 months to live, and we are all expected to take great comfort in his conclusion:

"When I learned about the eight-month median, my first intellectual reaction was: fine, half the people will live longer; now what are my chances of being in that half. I read for a furious and nervous hour and concluded, with relief: damned good. I possessed every one of the characteristics conferring a probability of longer life: I was young; my disease had been recognized in a relatively early stage; I would receive the nation's best medical treatment; I had the world to live for; I knew how to read the data properly and not despair."


But what about those of us who aren't in the good half, who don't possess those magic characteristics for long life? Particularly those of us who won't "receive the nation's best medical treatment"? The general view on the "support" boards seems to be, "Whew! I got mine, so to hell with those poor bastards who fall on the wrong side of the dividing line." Which is one of the reasons I've never spent much time seeking "support" on those boards.

And speaking of contempt, here's a cute furry little anecdote. One of my low points in the nightmare that was yesterday came when the doctor was dismissing me and my tiresome problems with an indifferent wave of her hand. As I was leaving, I pointed to the sign that's on the door of every exam room, a list of Every Patient's Rights and Responsibilities. The number one Patient's Right at the very top of list is the right to "reasonable access to care."

"Do you call this 'reasonable'?" I asked, referring to either my six hour pointless wait or my six month fruitless quest to have the damn port taken out. She shrugged and said, "I'm sorry but it's not always possible."

"Then I suggest you take down the sign," I said. "If I don't really have the right to reasonable access to care, then don't advertise that I do."

She shrugged again and said smugly, "Well, you do always have the right to go elsewhere."

Oh don't I wish I had that "right." But she knows as well as I do that without insurance, even if I can pay out of pocket, private doctors and hospitals won't give me the time of day. They'll automatically turn me away, suggesting that I shuffle back over to Our Lady of the Damned. Without insurance, I have no "rights" whatsoever to anything other than the charity system.

Do you know what a slap in the face it is to realize that even your doctor has such utter contempt for you?






Give me dogs and blogs any day.

31 Comments:

Blogger -L said...

Yay, dogs! Superman is a total hunk, Liz. Great photos. Squeeze those puppies of yours loads. I think you picked a good time to get a big dog that can handle some bear hugs.

Also, blogs and dogs is good stuff. My mother's everyday anchor since losing my dad unexpectedly in middle age? Her dogs. Not only are you not nuts, you're in good company.

All sorts of happy wishes in cute fuzzy bunches,
Loorol

4:44 PM  
Blogger Kek said...

Some people simply don't live in reality. Your health system sucks big time. Is there any avenue of complaint? Any patient advocacy service? Surely if enough people make a noise, some sort of action will result, even if it's just a kick in the butt for the rude doctor. Then maybe she'll think twice next time before treating some poor person as just a number. I know, it's not much...

I remember reading Lance Armstrong's story and while I found his strength and sheer guts inspiring, I was also very aware that he was extremely lucky to have money and powerful friends. He was treated far differently to the average person, and that seemed really, really wrong. Not because he didn't deserve the outstanding treatment he got, but because everyone should be entitled to that same level of service.

Enjoy the doggie hugs.

6:33 PM  
Blogger UrbanCowgirl said...

The right to healthcare is a human right. End of story.

The USA chooses not to ratify the International Covenant on Economic, Social and Cultural Rights doesn't make healthcare any less of a human right. This means the USA doesn't feel like formulating fair and rational policies to the maximum of its available resources in pursuance of the protection of that RIGHT for EVERYBODY. Most people in the USA are probably not even aware of this enormously important international treaty.

It makes me so angry. I'm happy that you at least have dogs to cuddle, but I'm so sad that you and so many others have to live in a nation that gives not a fucking damn about their wellbeing.

I can't wait to see Sicko either, though in NZ we'll probably have to wait until next year.

Also, the USA isn't the only nation involved in the debacle. Here in NZ the gubment announced yesterday that they couldn't afford the $10million to vaccinate ALL 11 year old girls in NZ against cervical cancer. On the same day that they pledged $10million of funding for the next NZ America's Cup bid. A sporting event is apparently a better use of that cash. I won't even mention the $11bn tax surplus sitting in NZ's coffers right now. Or the fact that they HAVE ratified the ICESCR.

How fucked up is that?

It makes me so glad for the NHS.

7:42 PM  
Blogger Irish Goddess said...

You are SO attractive in every way possible. Reading this blog is the highlight of my day because I learn so much, and read about really difficult issues all while enjoying the company of someone I wish I could know better. I love the artistic side of you, and the strong side of you, and the health-concsious side of you. I love the funny side, and the political side, and the mother side... well, I could go on and on but I am embarrassing myself. I am just so damn glad you are here, and I am also so glad you have brought these issues to my attention.

7:51 PM  
Blogger Lene Andersen said...

I just read your post from yesterday. First, I'm so sorry that the blasted port will remain in. That really sucks. Second, I was beyond horrified to read your account (as I have been with all your posts about the hospital). I grew up in Denmark (socialized medicine), live in Canada (socialized medicine) and the conditions you describe are insane. Just insane. And because people trapped in that system are sick, they don't have the energy (or the social power that comes with having money) to make noise and so it all continues... Wanna come live here?? Not all our doctors are perfect and lord knows, the system isn't either, but I've never heard of patients being treated like that here. Right now, my mother's laid up for 3 months with 2 broken ankles, hospital, convalescent and rehab and it's not going to cost her a cent. The U.S. system is a disgrace. I cannot believe how they've managed to convince a fair number of Americans that making money on sick people is the Right Thing. As for that idiot commenter - correct me if I'm wrong, but the money paid into health insurance doesn't actually pay for drug research. It just makes money for the insurance company. Sheesh...

That said... about the port? About the repulsion factor? I think it looks really cool. Kinda Borg-like. But then, I'm the one who took a picture of the pin sticking out of my mother's toe and posted it on my blog, so maybe I can't be relied on to be normal. My apologies if me finding it sorta (ok, a lot) neat is as bad as the idiots who recoil.

7:52 PM  
Blogger momo said...

Oh, Liz! I came over anticipating news of a port removal and just found your story about your awful disappointment. I'm so sorry you were treated so badly.
I'm sending you proxy hugs by way of your dogs.

7:53 PM  
Blogger Citygrrrrl said...

so i'm really good with an exacto blade, and i have some top shelf tequila...

but seriously. this needs to be a book, and you need to be interviewed by michael moore.

there is some interesting synchronicity here.

9:33 PM  
Blogger califmom said...

Liz,
I thought you'd enjoy reading this piece on Sicko's impact on a group in Dallas/Ft Worth. Amazing. In a good way.

I think my right-wing father may even vote democrat if they have a better health plan. He's, like you, finding out what it's like to be the un- under-insured in his early 60s.

It's just wrong.

BTW, you are looking fabulous, port and all.

9:50 PM  
Blogger Hathor said...

Since I do have health insurance and I do know how much it cost me and my employer; I give them the real numbers; it shuts them up. My insurance cost more than the things that comment mentioned.
I take one drug that it cost the insurance companies $1700 per dose. It has been around for at least ten years, you would think in the free market system, the pharmaceuticals would have made their R & D cost and profit. Almost every kidney disease and cancer patient with anemia, takes it.
Most people who don't have serious health problems or the extremely well to do, seem to be quick to offer solutions; which don't work for the sick. Any plan is good when you are healthy.

10:00 PM  
Blogger Ya Looblue said...

sendin' you a big 'ol Cartman style "GOD DAMNIT!". i too, however, second Lene's comment on the borg factor being one of the more interesting things i've seen. some extreme body mod guys are implanting all sorts of crazy shit under their skin to look like lizards and angels and all sorts of things. but of course leave it to me to say something completely inappropriate. i hope the time flys by for you Liz...i'm glad Superman is so awesome. *gives you a bear hug and slinks away*

11:27 PM  
Blogger Schmutzie said...

I am sorry to hear about your port removal fias. Damn.

But the internets are good, no? And fuzzy pets? Thankfully, we've got both.

12:56 AM  
Blogger Mel said...

It's outrageous, how easily we can be relegated to the "doesn't matter" box.
I have been on state medical insurance in the past, though mine was for pregnancy; I was having flashbacks to the contempt I received for having the gall to be poor as I read this post.
Sad.

4:44 AM  
Blogger George said...

I know we complain here about the NHS but I think its better than that. People complain about paying taxes but when they go towards providing decent care I can't understand the whinging. Of course they go towards other things that are a more contentious but there you go.

And your dogs don't just cheer you up. My one year old daughter lights up every time she sees their photos and demands that we start woofing. Its a grand way to spend five minutes.

5:16 AM  
Blogger Marina said...

This comment has been removed by the author.

7:40 AM  
Blogger Marina said...

Marina dijo...
I'm a spanish woman (wow! I bas about to say 'girl' and I'm 3...!!!).
I'm fascinated with your powerful personality and just wanted to send you a kiss across the ocean and some friendly barks from my doggy. We both wish you the best of lucks, someone as special as you are really deserves it!

7:42 AM  
Blogger Leesa said...

First, have you considered writing a memoir about your experiences with the "public" health system in the U.S.? If not, you should really consider it. You're an excellent writer, and putting it in print with distribution might help a lot of people realize how horrible things are for people who can't afford insurance.

Second, okay, I can't believe I assumed that the jerk doctor was male yesterday. Doh! Amend yesterday's statement to: "If you need someone to come down and deck that bitch of a doctor you had, I'm happy to travel." I'm so sorry you had that experience, but I had to giggle when you wrote about pointing to the patient's rights chart. You GO, girl! I would have so angry that I would have been completely flustered. I wouldn't have thought about doing something like that until I was in the car, pulling out of the parking lot. You are not only witty, but cool under pressure!

/rant on Third, about that commenter--wow, where to start? I worked for a well-known cancer center here for a few years. Every Thursday, all the cute little pharmaceutical reps would come into the office, with their free pens and post-it pads with drug names on them, and silly little desk toys (with more drug names on them). They'd flirt with the male doctors, flatter the female doctors, and hang out all day, showing samples, pushing their useless crap (with drug names on it) all over the office. Those girls got paid enormous amounts per hour--usually they start at around $18/hour, with mostly just sales experience as a requirement. (But they must be cute, and preferably blonde. I wonder if they put that in their recruitment ads.)

The biggest thing that bugged me about those pharmaceutical reps, though, is that they were also busy supplying the doctors (who could well afford this stuff) with tickets to the symphony, to the ball game, to Aruba for an all-expenses paid golf trip, to Hawaii for a drug "conference", where the docs attend one presentation about the company's newest drugs in four days. Drug companies are certainly not clipping coupons, if you get my drift. Whenever someone says that R&D is so enormously expensive, and that drug companies have a right to charge as much as they do for drugs because they have to do so much R&D, I want to hurl. That's not free market, it's bribery. (Ooh, the free market comment, as someone who studies such things, really gets under my skin. That commenter needs a serious education in what a free market is, and what it involves!) For someone who is concerned about people wasting money on Starbucks, I'm quite surprised that the commenter isn't more concerned about how the drug companies waste money. They certainly waste a lot more than someone buying Starbucks once a day. /rant off

8:35 AM  
Blogger Lin said...

Dammit I wish you could move to the U.K.!

8:50 AM  
Blogger saraarts said...

Redneck Mother has been talking about Sicko quite a bit with her usual intelligence. She has bunny and chicken pictures, too, which break things up nicely.

I can't go see it because I actually have PTSD from dealing with the really crappy insurance companies foist upon me as "benefits" when I was a Whole Foods employee, and every time I think about it my blood pressure skyrockets and I see white.

Suffice it to say that I have been through similar experiences to yours yesterday while insured, and then I have had to argue with people about who was going to pay for it. My experiences were not the same, of course, and I won't even say they were as bad, either, though the longterm consequences were really very bad indeed.

I have such angst around all this I can only talk about it in tiny little pieces at a time, months apart. The idea of immersing myself in a film about other people's probably even worse experiences along these lines is sort of like the idea of sticking my hand in a fire just so I can understand how bad it is. Can't do it. Just can't.

But I'm glad the movie was made, and all I can say about or even to all those judgmental people you've quoted is that hubris is real, and it's going to catch up with them, and they're really not going to like it when it does.

9:50 AM  
Blogger Bob said...

I am so disappointed for you.

you are a very attractive woman, port or not. I think you aught to paint a smiley face on the damned thing.

3:02 PM  
Blogger Carny Asada said...

I am so, so, so sorry about the port. I know it's not a life-threatening thing, but I would so happily have cut my own port out with a rusty penknife by the time I was done with it.

One thing about Sicko is, it isn't about the uninsured -- Michael Moore decided to foicus on the "lucky" folks who have health insurance, for all the good it does. You come away realizing that, even for the people our health system is supposedly serving, it is really messed up. We loved the movie, but it put both of us in tears -- too close to the bone, I guess.

5:32 PM  
Blogger B. Dagger said...

That sucks, Liz. I'm glad you feel better.

Superman looks kind of like a sexy kangeroo.

5:39 PM  
Blogger L. said...

I am speechless at the poor treatment you received. There is really a bias against people who lack insurance in this country, and it isn't even always financial -- my husband is Japanese and works for the Japanese government, and so now that we're living in the U.S., we have to pay up front in cash whenever we have medical treatment and then submit the bills to Japan to get reimbursed. I can't tell you how many medical professionals -- doctors and dentists as well as their office staff -- have sneered at us when we hand over our credit card to pay in full and ask them for a receipt. "Oh, you're UNINSURED?" Even when I explain, no, we just have overseas insurance, the sneer doesn't always go away.

Unrelated -- I was surprised to read that you appreciate your dogs because they "don't remind me daily that I'm no longer attractive." Maybe you're just unbelievably photogenic, but based on the photos of you I've seen on your blog, it's never occurred to me that anything about you is "unattractive." I'm younger than you and healthy, and yet I would be VERY happy if I looked like you -- seriously!

11:51 AM  
Blogger Axon said...

eLiz--

Shame on anyone who let you think you're not attractive. You're just irresistible, even at this remove. Keep on,

--Ax

10:50 PM  
Blogger Lymphopo said...

Smooches, ax.

11:18 PM  
Blogger Axon said...

eLiz--

Swooning....

No really, looking at the port pic and thinking "can ya dolly back a bit?"

And sure, I wanna check out the tatas, but I'm also all "whoa, check out the guns on that gal", which I know both sentiments are so not acceptable, but I'm a child of my era, and all that. You look strong, and, it must be said, hot. I'm sure there's a special circle of hell for scary creepy old guys lusting after cancer survivors, but hey, you make it look easy.

Seriously, pulling for you with all I got.

--Ax

1:06 AM  
Blogger Alto2 said...

I think you should make an appointment to see the CEO or COO or the head risk manager of Our Lady of the Damned. When you meet with this person, make it an information session about the course of your treatment at their hospital. Don't ask him/her for a thing. Then, tell her that you have documented the entire process, and you're going to forward it to the local paper and to the wire services. See if that doesn't get a response from OLOTD.

8:41 AM  
Blogger IFIWEREKINGOFTHEFOREST said...

I have some complex thoughts on the "sytem" but they don't lend themselves well to print--without ritin a book on the subject.

I found myself last night in a situation usually more familiar to women, i.e. waiting for a stall door to open. I waited and I waited and I waited. Then this guy comes walking in and goes right up to the door in front of me, opens it, finds it empty, and walks right in--and I continued to wait in abject misery for the next door to open.

I've assumed, incorrectly I hope, that you already know that if something acute comes along--chest pain, fever, nausea, vomiting, diarrhea, dehydration, shortness of breath, etc--that you can walk into any ER at any private hospital and that they'll treat you.

If it turns out to be something requiring hospitalization you may get transferred back to OLOTD--if they have a bed open on the floors. Otherwise, you'll be admitted at the hospital you've chosen to visit pending an open bed at OLOTD.

Regardless, you'll bypass the gauntlet of the ER waiting room at OLOTD and the luck of the draw interlude with a triage nurse who may or may not think you're a candidate for the front of the line.

The (private) hospitals in the area routinely write off fifty percent of their billings. One writes off about seventy percent. So, while you may indeed get a bill in the mail, that's what shredders are for.

The port? I'm sorry. The alternative plan above (widely utilized by those who know how to play the sytem)won't work for getting the port out.

I know you had your heart set on getting it out. It's an exercise in psychology. It bothers you more than it bothers us, if at all.

Of course, if it were ME with the miracle of technology implanted in my chest, I'd go into hibernation.

You rule.

IIWKOTF

6:14 PM  
Blogger belledame222 said...

Yeah, I saw Sicko. It was good. It was -really- good, actually. sadly, i think a lot of Americans are like that poster there.

Some of us are/were talking about that over at Feministe, if you've time/energy/an interest. Several topics' worth, actually--Holly and Jill have posts on it also.

as for the movie--you know, if one were sufficient unscrupulous and/or tech-savvy i bet there's a way to download it off the Internets already. or--probably not a go at this point, but have you tried YouTube?

4:43 PM  
Blogger belledame222 said...

and yeah, totally: another vote for a book. hell, i think you've pretty much already written it here. it'd just be a question of getting it published. -someone- must know how to make that happen, if you wanted it...

and i still think your earlier "Life in Louisiana" needs to be read by more people as well.

4:52 PM  
Blogger Elsewhere007 said...

I wouldn't say your port was hideous. It just looks like you've been captured by aliens who've implanted a device in you -- like Agent Scully.

I thought France was supposed to have the best health system in the world...

8:49 PM  
Blogger zezrie said...

I wish you lived in Key West, FL Liz. Dr. Stephen Krathen treated my husband's Leukemia, without us having insurance. He's also associated with Johns Hopkins. Just maybe, if you called his office, he could give you some names of private Dr.s who can treat you in your area without being soul raped every time you see them. Here are his particulars:

Stephen A Krathen, DO
520 Southard St
Key West, FL 33040
305-296-4220

Hope it helps
Zezrie

7:47 PM  

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