Gourmet Goddess's Open Salon Blog

I almost died without health insurance (or Why 'Obamacare?')

Fri, 30 Mar 2012 11:03:58 -0400

I've been reluctant to write about my story online. But when I think about how lucky I am to be alive, and how lack of insurance almost killed me, I think - well, if that could happen to me, it could happen to anyone.

So this is my story.

Two years ago, I was preparing for a research trip to India. Suddenly I got a pain just above my knee - it was a little persistent and there was some swelling, but I didn't have health insurance and I thought, okay, if I ignore this it'll go away. I'd had knee trouble growing up so I thought it was no big deal.

Three months later, while walking in a mall with a friend, I suddenly felt lightheaded, dizzy, my heart was racing, I couldn't catch my breath. I calmly said to my friend as I sat down on a bench, "I feel like I am having a panic attack." I was sweating and my skin was suddenly clammy. Then I said, in all seriousness, "I know this sounds strange, but I feel like I'm dying." She held my hand while I breathed through it, and asked me if I wanted to go to the hospital. I said no.

It subsided enough for us to go to the movie we were planning on seeing, so we walked there slowly and sat and watched the film. My heart broke out into that racing a couple of times during the film, and it was hard to catch my breath. I drove home, but it was a bit worrying - I had to pull over once because I couldn't catch my breath. Walking up the stairs to my house was almost impossible - I almost had to crawl up the last few steps, because I couldn't breathe and my heart was racing so much. I collapsed in a chair and fell asleep in it for the night.

But I didn't have health insurance, and I was unemployed (and had worked for an employer that was small enough it didn't have to participate in COBRA), so I didn't go to the hospital. When I lost my job, I applied for health insurance, but because I was (like many Americans) overweight, I was denied coverage, despite having healthy cholesterol, no sign of diabetes, and being of generally good health.

A couple days after the incident at the mall, I was still having trouble breathing, but it wasn't so bad. Then my leg swelled up like a balloon. It was so swollen that it was excruciatingly painful to walk on. I took lots of ibuprofen and kept it elevated, which seemed to reduce the swelling a lot. After a week or so, things improved, but my leg would swell up quite easily.

Two days before I was scheduled to leave for my research trip, my husband said to me, "I really wish you'd get your leg checked out by a doctor before you leave." That night, a friend emailed me from India, out of the blue, just simply saying, "please go to the doctor." So, I sucked it up that I'd have to pay $150 for the urgent care visit, and went. Later I found out that friend had had a dream about me, that I had a blood clot in my leg, and if I got on the plane to come to India, I'd be dead before I arrived. Little did either of us know how prescient that dream was.

I talked to the doctor and she listened very intently to my whole story. She asked me why I hadn't sought medical help earlier, and I told her it was because I was uninsured and hoped it would just go away. Then she said, "I want you to turn around, get into your car, and go to the emergency room. Right now." She told me I was not getting onto any airplane, and argued with me very compassionately that she wanted me to go to the hospital, because she nearly lost a patient who didn't take her advice in a similar case. She gave me the name of a hospital that was supposed to be for low income people, and sent me there. She also waived the cost of my visit (or paid it herself, I'll never know) so that cost would be less of an impediment.

The emergency room experience was nightmarish. We waited for countless hours, during which there was a shooting at the emergency room, and the hospital went on lockdown. They finally admitted me, but my husband was not allowed to join me because of the shooting. The nurses took a liking to me, because I was one of the few patients who wasn't mentally ill or drug addicted. The doctors confirmed what the urgent care doctor feared - I had multiple clots in my left leg, including a deep vein thrombosis that had been throwing clots into my lungs, causing multiple pulmonary embolisms (which was what I had experienced in July). The doctors were all rather shocked that I was still alive, and said I was more than lucky to be there - it was more or less a miracle. If I'd gotten on that plane, I'd be dead now.

They admitted me to the hospital, where I stayed for one night, pumped up with blood thinners. It was a bed in a tiny shared room with four other women and one poorly maintained bathroom. The nurses were really wonderful, for the most part, though it was incredibly difficult to get discharged even after the doctors gave their consent. I kept asking how much my treatment was going to cost, and nobody would or could tell me. I'd ask how much a doctor's visit was going to cost, and no one would tell me. This despite a California state law mandating that everyone has a right to know how much their doctors' visits and treatment is going to cost!

We finally got a bill - for over $10,000. A few hours in the ER, one night in the hospital (one night total), minimal care (two injections daily, one ER ultrasound of my leg, one hospital ultrasound of my leg, two visits from docs in the ER, two visits from the docs in the hospital), and it cost so much? The bed space in the hospital - without any additional services - was billed at $5000 per night.

From there it was a nightmare trying to find out what things cost, how to get our bill reduced, etc. If we weren't basically homeless and destitute (thank goodness we aren't) then the whole thing was a tangly web of misinformation and hoop jumping.

After months of stressful back and forth, being told one thing and the billing department doing another, the hospital finally reduced our bill by 50%. They made it clear they were doing this as a gesture and nothing more. We had fortunately documented all of our interactions, and our feeling was that they were afraid we might bring a lawsuit against them. But still, we didn't have the money. We had some money in my husband's HSA, I had about $800 left in my savings from being unemployed so long, and we were facing not being able to pay the bulk of the bill.

Some friends and my husband urged me to talk about my story online. So I did. And it went a bit viral. Suddenly, people were sending money to pay the hospital bill and my other medical bills from treatment. It started with friends, and then extended to people I didn't know. Without the kindness of these friends and strangers, I don't know what we would have done.

Just after this whole episode ended, my husband's medical insurance through work opened up for enrollment. We hadn't done it before because the cost was exorbitant for us, extra money we didn't have. But we figured we had to try and make it work somehow. I'm a grad student and my student loans have helped pay the difference. My new doctor helped me a lot, discovered the genetic condition underlying the clots, and has me on a course of treatment that has enabled me to do my fieldwork, finally.

Those few months were some of the worst and most hellish of my life. Not only was I staring death in the face, but I was simultaneously having to wrestle with a bureaucratic medical establishment that, with the exception of some of the actual providers that gave me treatment, seemed to care less about me as a patient and a human being. Knowing what i know now, I wouldn't have gone to that hospital, I would have gone to another local hospital that clearly states its fees and offers a 50% discount to the uninsured, regardless of income.

Even so, medical expenses are too high. My pre-existing condition means I'm now uninsurable for life, but people like Mitt Romney think I should be stuck this way. It's privilege talking - somebody who hasn't had to deal with being poor and uninsured while facing a life-threatening illness.

And for me, my condition was life-threatening, but the treatment was fairly swift and sure. After a few months, I was running on a treadmill and well on my way to being the healthiest I've been in years. And at the end of the day, $10,000 is a lot of money, but it's nothing compared to the expenses that friends have faced in similar situations. One friend was diagnosed with breast cancer just as she lost her health insurance, and it sent her into bankruptcy, as her treatment went into the millions. Some hospitals (including the one I went to) won't give treatment unless you demonstrate an ability to pay, even though they often won't tell you ahead of time how much that treatment will cost, so you can compare costs.

This is why we need the Affordable Care Act (divisively nicknamed 'Obamacare'). People like me, like my friends, like you, too. Knowing that in a couple years I'll be able to get health insurance even if my husband loses his job is a big deal.

And the next step is hemming in costs. Here in India, I had to get an x-ray, and it cost a whopping $9. My blood tests (required every couple of weeks) cost $5. My medication is a fraction of the cost. All of it is equitable or better quality medication and care compared to what I've gotten in the U.S. In America, with insurance, I have to pay $50 for an x-ray, and $13 for my blood tests. Without insurance, that x-ray would cost me upwards of $300 and the blood tests about $50. I can't afford to have the clot in my leg checked again because the ultrasound (with insurance) costs nearly $300.

This is all so crazy! But everyone just seems focused on making more money, and not on getting a handle on why everything is spiraling out of control. When profits come ahead of people, it's always a problem, but it's especially a problem when it comes to medicine and health care.

I am one of those people who thinks the ACA is a good start, but is not nearly enough. It's a first step in what needs to be a long process towards a broad public health system that will help people instead of penalizing them for being out of work (but too financially stable to be homeless).

Anyway, that's my story. It's not an uncommon one. Someday, I hope those Republicans who claim to be Christians will be a little more Christ-like and realize that helping the poor - not the mega-rich, who can already more than help themselves - is what Jesus actually talked about.

Making peace with uncertainty

Fri, 16 Dec 2011 18:12:02 -0500

2005 was the last time I spent Christmas with my whole family. That year, I gave my father something I knew he would love and could appreciate - an entire case of Snickers bars.

My father had spend the past 10 years struggling with a degenerative brain condition called Lewy Body Disease, often misdiagnosed as Parkinson's and Dementia, because it mimics the symptoms. We had watched him slowly deteriorate from the athletic, brilliant, funny engineer to a bedridden shell of a man who desperately hoped for death, but never lost his sense of humor. Always tall, active, and slender at 6'6", he slowly went from a healthy 185 pounds to just over 100 pounds. He was going to die soon, racked with pain caused by his infirmities and paranoia caused his medications, and food was one of his last few true pleasures in life.

He opened the present and, taking a few moments to register, he slowly looked up at me, a big smile struggling to spread across his face. He strained to form a word, and we all waited patiently. Finally, he said: "Yum!" We all laughed. It was good to see him happy.

He died five months later.

I miss my father. He was one of those rare people that everybody liked, one of the lights in the darkness of life. He was on the one hand the geek stereotype - a bit of a hermit who enjoyed spending endless hours hunched over circuit boards with soldering irons, or laboring over computer code that would create a silly program to entertain the kids and grandkids. On the other hand he was outgoing and friendly, always ready to meet a new friend, never afraid of making a fool out of himself in public if he could make people smile. He always had a good-natured, wry joke to make, and didn't really like dancing but never refused to dance with me (which he did rather badly). His hair was always combed, beard neatly trimmed, teeth flossed, shirts pressed, shoes freshly polished. There were always endless stacks and piles of books and magazines and newspapers and schematics and old electronics in his home office, and even though it seemed unnavigable, he knew exactly where everything was. He was brilliant at math, and there was literally never a math problem he couldn't solve, and he was endlessly patient with my torrent of tears as I struggled through calculus, something it turned out I was pretty good at (at the time), but hated (still).

People liked him because he was honest - not just about things in general, but he was honest with himself about who he was, and in turn was honest with other people. He was kind. He had a perpetual, honest smile that emanated from a place within that was deeply satisfied with himself, his place in life, and what he had accomplished. Only one person didn't like him, and that person turned out to be something of a con artist who, if I recall correctly, ended up in prison.

Any of my siblings or I can tell you stories about times that my father helped us in troubled times, sometimes even without any words so that our mother wouldn't know he was helping us, so as to preserve the whole network of relations, allowing us to do what we felt was right for us, while not making a big deal out of it with our mother, whom he deeply loved, and who stayed by his side caring for him until the bitter end.

So perhaps you can understand why it didn't seem fair that this brilliant man was diagnosed with a disease that would rip away from him and his family almost everything that made him who he was. To slow the deterioration of his brain, he had to take medications that made him intensely paranoid and gave him terrifying hallucinations. They changed him in horrific, emotionally debilitating ways. He would cry out suddenly, squirming and shifting his trembling body under his blanket, as all the pilled fuzz on his blanket shapeshifted into tiny insects crawling all over him. He'd wake up in the middle of the night, terrified, and ask my mother what all the people were doing there, pointing to the foot of the bed toward empty space. He was convinced that the dog was being trained to steal things and ruin the family. He started distrusting members of the family in his cloud of paranoia.

For someone with a brilliant, logical, and down-to-earth outlook for so much of his life, seeing him crippled mentally and physically was tremendously painful to watch. Even more painful was thinking of how unconceivably horrific it must have been for him. He finally decided to stop taking these medications, because their side effects were far worse than the benefits. He couldn't choose walking and being able to bathe and dress and feed himself over trusting and loving his family. He sacrificed his dignity for us.

Mother's Day was the last day he had any lucidity, and it was also the last day I spoke with him. We had a heart to heart, and he was able to speak in complete sentences for the first time in a long time. I told him I loved him, and he told me he loved me. We talked about my schooling, we talked about the man who is now my husband, and we talked about what it means to die. We sang songs together, because even when he was unable to speak, he could still sing with perfect pitch.

A week later, he finally died of pneumonia, essentially, as his lungs filled with fluid over the course of several days, and during that time I learned where the phrase "death rattle" came from, his long, heaving, involuntary breaths punctuated by a ghostly, gurgling rattle. I sat by his side for hours, singing old hymns that he had treasured, telling him it was okay to let go. Then early one morning, when everyone was out of the room, he finally slipped away.

Christmas hasn't been the same without my father. We've carried on some of his traditions, like making sure to fold the discarded wrapping paper instead of crumpling it ("it takes up less space that way, it's more efficient!") or making sure to save all the bows ("we can use these again!"). And every year, around this time, I think about how unfair life is, and how people talk about there being a "plan" or "things happen for a reason" or talk about karma and so on.

I have come to believe that this is bullshit.

Now don't get me wrong, I am just as likely as anybody else to say "everything happens for a reason," but when I say it, I mean something different. I don't mean that there is necessarily cause and effect for something bad happening to you when you've done everything "right" or have been a good person. I don't mean that there is some "divine plan" for your life. What I mean is that if something good or bad happens to you, it's not about what happened in the past or what is going to happen in the future - it's about right now, and what you are going to do to make it count, and make it matter.

I don't think my dad got sick "for a reason." I don't think that this was part of some divine "plan" for his life. I think that he had a job that exposed him to things that no human being should be exposed to, and because of its classified military nature, we may never know what exactly he was exposed to. We often didn't even know what he was doing for a living because it was classified. I think he was unlucky and that he, like so many of his co-workers, got sick. Or if it wasn't the chemicals, if it wasn't as simple as his job causing the problem, that it was just a really, terribly unlucky thing that happened to him. Period. The end.

This depresses some people. They think, how can I live with this kind of randomness and uncertainty? But I think, how can you live thinking that somebody else is pulling invisible strings, leaving you helpless except for faith that there must be some unknown reason for your struggle?

To be honest, I find randomness completely empowering. Okay, something terrible happens. Well, shit happens. What are you going to do about it? Are you going to curl up in a ball, or are you going to do what we humans do best, and deal with it? I am a deeply spiritual person, but part of that spirituality is believing that the divine exists within us, inside of us. The more we can do to help each other, understand each other and ourselves, create a better world for ourselves and our children, the more we honor that divinity. But that divinity includes the randomness of life, in all its frightening beauty.

Essentially, all these things are manifestations of randomness. What we choose to do with them, how we react to them, how we learn and grow because of them, is how we manifest and express divinity. This is just how I see it.

It's randomness that took my father, but it's also randomness that brought him together with my mother, and what they decided to do with that random meeting - plunging into marriage after just a few weeks of knowing each other - gave me life, and gave them 30 years of happy marriage. It's randomness that brought my husband and I together, a random illness that ended up in me going to an event that I would not have attended otherwise, and some kind of divine spark that ignited within us when we saw each other and started talking.

None of these things happened "for a reason," but we gave them meaning through our actions and reactions. We took the opportunities that came, and we made something wonderful out of them, or we learned something from them, or we helped others through being honest with our struggles and our pain.

My father is dead now, but so much of what he was lives on in me - his dorky sense of humor, his sense of principle, his curiosity and scientific way of approaching the world, his sense of wonder at the universe. Yesterday I got out of the shower and sat down to put my socks on, and found myself running the socks between my toes to get rid of moisture ("this is how you avoid getting athlete's foot," my father would say, and it would lead into a story about his days stationed in Guam during the Vietnam war, when he'd joined the Air Force to dodge the draft), and laughed, as this is something that my mom used to make fun of my father for doing. And here I am, doing it every day, finding it incredibly useful. I am more graceful because my father taught me to be aware of the way one's body moves in the world as we would skip over boulders on our hikes, and he'd caution me to be careful of harming living things around me with careless footsteps. I am more thoughtful because my father taught me to step back and look at how something works before trying to deal with it, or to see how my words and actions would affect people before leaping in and doing or saying something that might be hurtful. I find things more easily because my father taught me to stand back and always look under things, and see the larger view before delving into details. And I am a more caring person because my father taught me to love fully and fiercely, and not be afraid of anything. Even death.

So today, as another Christmas approaches without my dad, I miss him terribly. But the horrible randomness of his disease and death no longer make me angry at the universe. Instead of living asking why he died, I live asking why he lived, and how he lived, and it makes me a better person. Embracing uncertainty means being more open, and being ready for anything. It means approaching life with open arms, and always being ready to learn. I can't think of a better gift that anyone has ever given me, than that.

Happy holidays, dad.

The most amazing, healthy, nonfat blueberry banana bread

Sun, 20 Nov 2011 02:11:28 -0500

Hello, lovelies! I have been away for a long, long time.

In the last year and a half, I have been very busy! I lost 70 pounds(!) with a healthy diet and exercise, and lived abroad in India for six months, while my very patient and devoted husband waited for me back home in the US. I was also hospitalized with a previously hidden, life-threatening genetic condition, which made the weight loss imperative.

Perhaps I'll write more about all of that later, but for now I wanted to share a terrific recipe that I've adapted from this recipe. I've been eating ever more healthfully in the last year since my diagnosis.

This kind of thing is good to eat a little slice of in the morning, before or just after a heavy workout. I only eat this kind of thing maybe once a week, so being able to freeze it is great. I also use mini loaf pans and immediately freeze one of the loaves, so I am not tempted to eat it!

Use very ripe bananas to add sweetness. If you use plain yogurt, you'll need to add 1/4 cup of sugar.

This recipe is pretty healthy and ultra low fat, almost nonfat - a third of a gram of fat per serving, with 2 grams of fiber, 7 grams of sugar, and 2 grams of protein. There's nothing wrong with fat - in fact, it's an essential part of the daily diet! - but by taking out the traditional fats in this bread, you open up room elsewhere in your diet for eating more healthy fats, like avocado, olive oil, nuts, coconut oil, and so forth. It also reduces the calories like crazy, so you can indulge in a slice without throwing your daily calories off.

The Most Amazing, Almost Nonfat Blueberry Banana Bread

Yield: 2 mini loaves, 8 slices each (total: 16 slices)

Calories: 81 calories per slice

Ingredients:

1/4 cup Turbinado Sugar

1/2 cup Blueberry Nonfat Yogurt (I used Trader Joe's French Village)

3 Very Ripe Bananas

1 tsp Baking Soda

1 tsp Baking Powder

1 tsp Cinnamon

2/3 cup Chickpea Flour (Besan)

1 cup Whole Wheat Pastry Flour (I used Bob's Red Mill)

1/2 cup Frozen Organic Wild Blueberries (I used Trader Joe's)

Directions:

Preheat oven to 350 degrees.

Mash the bananas and mix with sifted baking soda.

Add the yogurt and sugar and mix well. Sift in the baking powder and cinnamon, then the chickpea flour . Mix well. Add the wheat flour and stir gently until just mixed - once the flour is moist, STOP STIRRING.

Fold in the blueberries until they are just mixed in.

Spoon gently into 2 oiled non-stick mini loaf pans, place the pans on a cookie sheet in the middle of the oven, and bake for 30-35 minutes or until done. They're fully baked when a toothpick inserted in the center comes out clean.

Place the pans on a rack to cool for 10 minutes, then turn the loaves out of the pans and cool on the rack completely.

If you want to do it the way I do it, then freeze one of the loaves, and mark the other on the top with cutting guides (I like to do this with a bread knife, just making knicks in the surface), measuring out 8 equal slices. The best way to do this is to divide the loaf in half, then divide the halves in half, and then divide each of those quarters in half. Voila!

I don't slice it fully, because I want to keep it moist, and believe me, even if you overbake this loaf, it will remain deliciously moist. Keep the loaf in a sealed plastic bag on the counter or shelf, and between my husband and I, it's gone in a week or less, so there's little chance of spoilage.

Enjoy!

Roasting Lam and Divine Vinaigrette

Sat, 17 Apr 2010 14:04:36 -0400

Hello, Open Salon! How are you all doing? I hope Spring is treating you well.

I offer some notes from the abyss of PhD exams land.

First off, I've been cooking a lot lately - simple, wholesome, healthy food. I am no longer eating refined sugar, which I think has contributed to my working off about 15 pounds in the last six weeks. Hooray.

Second, about a week ago, I tried Francis Lam's suggestion for roasting cauliflower. Now, I'm no stranger to roasting. I roast vegetables all the time. But I'd never done cauliflower (never even really thought about it, actually) and thought I'd try it. So I followed his instructions to the letter, wanting to try out the Salon food writer and resident chef.

And what happened? It was awful. The worst cauliflower I've ever made. Bitter and terrible. I couldn't even eat more than one or two pieces. And I am pretty good with cauliflower - it's my favorite vegetable. I steam it, mash it, put it in curries, fry it, you name it. Lam's roasted cauliflower recipe was simple, but truly awful. I've been a little disappointed with his column in general, but I figured a roasted veg would be a simple way to start trying out his tips and to give him a fighting chance in my own kitchen. So that has kind of soured me on making more of his recipes or following his cooking advice. I dunno. Today's vinaigrette recipe doesn't look interesting, and besides, I already make a honey-dijon-citrus vinaigrette that's more or less a staple in our house.

Wait, you want to try it? Okay. Well, this is best made fresh right before you're going to use it, but you can make a bunch and save it for the next few days if you're short on time. I use rice wine vinegar for this because I love the delicate flavor - not too acidic or sharp, with a mellow flavor.

Omit the zest if you just want a simple honey-dijon vinaigrette.

Honey Dijon Citrus Vinaigrette

Ingredients:

- 1 part extra virgin olive oil

- 1 part rice wine vinegar

- 1 part dijon mustard (you can use any strong, gourmet mustard)

- 1 part honey (if your honey has crystallized, pop it in the microwave for 10 seconds to soften)

- citrus zest, to taste (orange, lemon, lime, or buddha hand... these are all great and offer different flavors... find your favorite)

- black pepper & salt, to taste

Mix everything in a small bowl. Adjust proportions to your own taste. You will never go back to store bought dressing. Seriously, making your own vinaigrette is so easy and delicious, it's crazy to buy it.

gloating on groats

Mon, 5 Apr 2010 13:04:56 -0400

This morning I am making oat groats.

Actually, I should say...

This morning I am making OAT GROATS!

It's kind of exciting for me. Oat groats don't have the instant satisfaction of my regular morning bowl of thick cut oats, but they have a different kind of satisfaction. Several, actually, today, in particular. I've never made them before, so yay. Also, they're the whole form of oats, so I'm venturing out into whole grain breakfast cereals. When I muster up my courage (or when I run out of groats?) I will make hot teff cereal.

Oats, though, are good for a number of things. I eat them every morning because they are yummy, have lots of fiber, and are filling. But they also have anti-depressant properties that are enhanced by cinnamon. I usually also put cardamom in with my oats (I just ran out of ground cardamom, and need to grind up some more, as I grind it fresh in small batches about once a week... time consuming but so much better flavor-wise), and cardamom is also recommended as an anti-depressant. So for me it's a great way to start the day when I'm in the thick of my PhD exam-driven isolation hell.

This is my first time making oat groats, and I found a recommendation to cook them in a 3:1 water:groats ratio, for 45 minutes. I treated them like rice - I rinsed the groats first, added the water, then added a bit of cinnamon and salt, brought them to a boil, and finally turned the heat way down to a whisper and set the stove timer. They're cooking right now. You can apparently also cook them easily in a rice cooker. If you have one with a timer, you can probably just set it at night to soak in the water, and then have it turn on an hour before your normal breakfast time.

I'm cooking just one batch on the stove... I don't like to reheat things, so I'm seeing how this turns out. In the meantime, I'm drinking elaichi chai (cardamom black tea) with milk (no sugar) and working on my comprehensive exams. When the groats are done, I'll add milk and dark raw agave nectar, which is my usual treatment for oats.

Have you ever made oat groats? If so, what are your favorite recipes?

UPDATE: The oat groats took about an hour total to cook, and they were delicious and different. Crunchy, nutty, slightly sweet. They separate completely into individual grains, much like rice, so if you like the texture of regular oatmeal (like I do), it will take some getting used to. But still yummy and satisfying.