Kameron Hurley

Ignorance & Lies: Why I Hate Going to the Doctor

When you have a chronic illness like mine and you go to the doctor – any kind of doctor, really – you inevitably get The Lecture.

I am a type 1 diabetic. This is an immune disorder that hit me 5 years ago when I was 26. Basically, it’s triggered by some kind of event that convinces your white blood cells that the cells in your body that produce insulin are now Evil and must be eaten. Over time, your body ends up eating all of them, so you no longer process sugar anymore. Eventually, your body starves to death, because the blood cells no longer receive sugar (food). Most people who get it are kids. It’s rare to get it after your early 20′s, but it happens. And, importantly it is NOT the one generally linked to high carb diets and lack of exercise – you know, the one that’s ALWAYS in the news and so everybody thinks they know about (people are just as woefully ignorant about that one, yet I still find myself enraged when they mistake me for a type 2 and assume I will just “get better” someday)

In fact, I make no insulin. Not a lick of it. I have none. Give me 24 hours without a shot of synthetic insulin, and I’ll die. And unless somebody figures out how to reprogram my white blood cells to not attack my insulin-producing cells, I will never get better. No amount of diet or exercise will ever “cure” me.

Them’s are the bald facts. It sucks. It’s unfortunate.

What this means is that no matter how many miles I run, pounds I lose, or how much medication I take, I still won’t produce any insulin.  I will still not get any better.

Got that? OK?

It is also a chronic condition. That means that it will eventually wear me down and kill me, because even if you’re living on eggs and cheese, your blood sugar is never going to be 100% “normal”. Oh, you can get it pretty close if you test about 10 times a day and never, ever, ever deviate from an eggs-and-vegetables diet, but any amount of strong exertion will send you low, and one mistimed or incorrect dosage of insulin could send you low or allow you to get too high, and when your blood sugar gets too high, it slowly starves and damages all your nerves and organs.

A normal person’s blood sugar is about 80. Your body’s always going to regulate your system back to 80, unless there’s something hosed up. When I was wheeled into the hospital five years ago, passed out and vomiting, hallucinating about little black dogs and how I should be doing my taxes in May, my blood sugar was up over 800. For nearly a year beforehand, nobody knew what was wrong with me. I mean, after all, I was an otherwise healthy young adult who ate right and exercised! Surely all the weight loss and exhaustion and infections and blurred vision and urinating and thirst and extreme hunger were just due to stress!  (my non-diagnosis was just the first step in my extreme distrust of doctors)

Anyway, after 20-30 years or so of irregular sugar numbers, your body just starts to fail.

So…. yay!

But what’s often most aggravating about chronic illness (really, any chronic illness, let’s be honest) is that nobody fucking understands how it works. And especially not how it works for me.  

BUT THEY ALL WANT TO TELL ME HOW IT WORKS ANYWAY.

I am so often confused with a type 2 – and, worse, an uneducated type 2 – that I try very hard never to use the word “diabetes.” It inevitably leads to lectures.  As if I don’t know that vacillating sugar numbers are bad for me. Like I don’t know my feet could get chopped off or I could go blind due to overly high sugar numbers.  Like I don’t stick to a stupidly low carb regime and exercise routine to mitigate these effects as best I can.

When my eye doctor asked me yesterday what my lowest low and highest highs were ever (no, she is not a new doctor. I have been there 3 times. And I always get THE LECTURE), I told her I’d been anywhere from 22 (after miscalculating the carbs in a croissant in Spain – I’m more insulin resistant in the morning [like most people], but my internal clock was still on evening, so when I dosed myself the way I would in the a.m. for this carb count, it was too much. I saw black spots and nearly passed out) to 435 (that was an unfortunate night in which my 2 a.m. sugar check alarm didn’t go off, so I missed a correction, which can be dangerous after eating pizza – this is one food I allow myself very rarely).

Are these numbers generally what I’m at ALL THE TIME? Of course not. My lowest lows are usually in the 50s and my highest highs in the 230s. On average, I’m clocking in at about 130. And that’s with regular (planned) exercise, low carb living 6 days a week, and testing my blood sugar 5-7 times a day.

But my eye doctor was shocked (shocked!) that my sugars vacillated between lows and highs like that (ever!), and decided to give me the usual lecture about how eventually I would go blind and have my feet chopped off if I didn’t control my blood sugar, and even though my eyes looked fine, you know, diabetes is a chronic illness and EVENTUALLY YOU WILL DIE HORRIBLY.

Oh, she said it much more nicely than that, with a very chipper smile on her face. And I just nodded my head sagely like it was the first I’d ever head of such amazing things and she knew what the fuck she was talking about. Then I proceeded to lie to her about my numbers the rest of the session.

I wanted to see her work out her diet and exercise and insulin calculations for two full days, let alone five full years, before she started telling me how crazy it was to have a 242 number at 2 a.m. after eating nothing but green beans, chicken, and sugar-free whipped cream mousse for dinner (hint: all the fat in the dairy makes it slow to process the carbs both in the dairy and the rest of your meal. So you may go to bed with a number of 90 and four hours later, ta-da! You’re at 240. The same thing happens with pizza, which means that if you want to eat a lot of it, you have to test your blood sugar and dose yourself with insulin every 2-3 hours or so for about 10 hours if you don’t want to hit that 430 number. Yeah, eating is tons of fun!). Yes, I have learned everything I have about how I react to carbs, certain foods, different types of exercise, and how the time of day affects my insulin doses through very hard, frustrating, scream-worthy, world-raging trial and error.

BUT OBVIOUSLY EVERYONE ELSE IN THE UNIVERSE KNOWS MORE THAN I DO ABOUT HOW TO MANGE MY ILLNESS.

I had surgery earlier this year, and the surgeon insisted I call my endocrinologist for “special instructions” about how to manage my blood sugar before surgury. She gave me strict instructions not to take ANY Novolog insulin that morning, and to take half my dose of Lantus (my 24 hour basal insulin). I knew she was full of shit. When I get up in the morning and start moving around, my blood sugar can jump anywhere from 60-80 points in an hour. It just… does.  Which is why I generally take a half dose of Novolog at 6:30 a.m. on weekends to correct for this spike (even if I’m not going to eat until 9am. On weekdays, I just dose immediately upon waking for breakfast, planning for a breakfast and a.m. workout routine which is always exactly enough insulin to cover 10 carbs). But, trying to be a good little patient, I followed her instructions, and sure enough, come surgery time, my blood sugar was at 160 and then 180, and they were watching it intently, because if it gets above 250 THEY DO NOT OPERATE. So I was in a holding pattern for another 30 minutes to ensure that my sugar was holding steady and not continuing to go up.

Needless to say, that’s the last time I contact my doctor before a surgery. I already knew exactly how my body would react.

But anyway, ignorance aside(I know! You’d think that was the WORST PART!), here’s what really fucking pisses me off about going to the doctor (and when you have a chronic illness like mine, you’re expected to go to the doctor at least 5-6 times a year – 4 times for your endocrinologist, once for the eye doctor, and once for the podiatrist. This is so you can get MAXIMUM lecture time).  What really pisses me off is people telling me how horribly I’m going to die. I’m tired of hearing about blindness, and kidney failure, and congestive heart failure and cataracts, and nerve damage, and amputation, and all the fifty bazillion things that are MOST ASSUREDLY GOING TO HAPPEN TO ME EVENTUALLY.

It’s like, you know what? What the fucking point is there going to the doctor if you’re just going to DIE HORRIBLY ANYWAY? And I swear to fucking hell, if I have to have one more useless appointment where it’s like, “Well, your A1c is fine, but it could always be better! You know, so you can put off having your feet amputated another year or two!” or “Well, there’s no sign of nerve damage… yet!” I think I will fucking punch something.

What the fuck is the point of this? Why am I spending my money to hear all about how I’m “not dead horribly… yet!” And “Yep, still got a chronic illness!”

I am never going to get any better. It’s never going to go away. I’m never going to be able to “get off” my drugs if I want to survive to tell of it.

It will not get better.

So why the fuck am I paying people to tell me how horribly I’m going to die so they can illustrate that they once read an article about how much it sucks to be a diabetic?

You know, if I was a type 2, there would at least be SOME KIND OF CHANCE that I could possibly wean myself off my meds after aggressive lifestyle changes as prescribed by my doctor, but as a type 1, THINGS ARE JUST GOING TO GET WORSE. And yes, thank you, doctor, I KNOW THEY ARE JUST GOING TO GET WORSE NO MATTER WHAT I DO AND THAT IMPROVING MY SUGAR NUMBERS IS SIMPLY PUTTING OFF THE INEVITABLE. It’s just a matter of how fast they get worse.

I am so fucking sick of paying people to tell me what I already know.  

Sometimes I feel like they are giving me these lectures every time because, to them, it justifies me coming in. I mean, what else are we going to talk about? “Yep, things look fine!” is just not going to cut it. They must prove their usefulness. So it becomes, “Yep, things look just fine… but EVENTUALLY HERE ARE ALL THE HORRIBLE THINGS THAT COULD HAPPEN.”

Thank you, doctor. I had no idea!

Afterall, I am just an ignorant little bauble head. I never even read a book! Let alone wrote one!

It was really, really hard to stop listening to what doctors told me. You see somebody in a white coat and you assume they know everything. It’s not true. In fact, 90% of them know less than you do about your own illness. There are some good ones, yes, and to be fair my current endocrinologist always tries to be helpful, and has been the best I’ve had for actual lifestyle suggestions (like switching from vials and syringes to pens – this was nice), but for the most part, people are just woefully ignorant, all of them operating on the same knee-jerk assumptions or six-year-old article they read about how you should eat a balanced diet full of carbs if you want to control your blood sugar.

Yes, seriously.

At any rate, that’s why I hate going to the  doctor.

 

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Eating Real Food

Half our cauliflowers appear to have been eaten by some kind of fungus, but these two turned out lovely, and we’ll be turning them into a fine cauliflower mash tomorrow.

And here’s what our garden currently look like, after harvesting some peas, a tomato, two cauliflowers, and two broccoli (including harvest of broccoli florets after initial head harvest):

I’ve been growing more keenly aware of where my food comes from (and what it’s actually made out of) the last couple of years. I grew up eating fast food. My parents both worked at a fast food company for 25 years. It was just… what you ate. It never occurred to me that you should eat any differently. I didn’t spend much time in the produce aisle until I was 18 and interested in dropping some weight I’d put on while on the pill. Switching to fruits, vegetables, and protein meant dropping 60 lbs in about 6-8 months. It felt almost effortless.

I’ve read all the books – like Fast Food Nation, The Omnivore’s Dilemma, In Defense of Food – and watched all the shows, like King Corn, Supersize Me, and Food, Inc.I know how we got here. And I know why.

These days, I work hard to eat well.

And, of course, that’s just it – I have to work hard to eat well. Folks who haven’t tried it really don’t know just how tough it is. Fast food, prepared food, soda, crackers, canned soup, frozen meals… these are revolutionary, time saving victuals that make it possible to feed a tremendous number of people on a very small amount of land with 80% of the base made of up just one versatile commodity crop – corn.

And it’s a blessing.

Yes, it’s killing us prematurely, because we have no defense against a double bacon cheeseburger. It sets off all of our primitive pleasure centers. Why not eat them all day?

Because, of course, you’ll die of malnutrition. But you’ll keep doing it, and doing it, like a rat with a way to self-administer cocaine. Giving up carbs is really hard to do. Even before I was sick, I’d get the shakes, and intense cravings. Then there are the visual cues, which are constant. As somebody in marketing and advertising, I know just how helpless we can be in the face of $5.99 single-topping pizza specials, particularly when you’re exhausted after work, haven’t eaten in six hours, and are faced with the prospect of an hour’s cooking time before food ingestion.

It’s amazing that we can feed ourselves so cheaply and easily in this country. Try growing a garden. Try losing half your cauliflower crop to fungus, like we did. “It’s a good thing we’re not relying on any of this to feed ourselves,” I told J. as I pulled out the cauliflower. Our little garden is just for fun. When we get a house with more land, we’ll likely be able to feed more of ourselves with it, but even a “for fun” garden is disappointing when you discover half your land was wasted on crops that don’t feed you.

As sympathetic as I am to the bullshit and poison that’s ended up in our food, I’m also very much aware of how things were before cheap food. Farming is not a fun life. Food doesn’t just roll out of the truck at the end of the day, full-formed. And after you grow it, you know… then you need to cook it. And that takes time. And planning.

On the one hand, the West is addicted to a diet that’s killing us. On the other hand, we spend less than 20% of our income on food and spend less than, what, 10 hours a week? preparing food (on average). As somebody who’s had to rebuild her entire conception of food from the ground up, I’m still sympathetic to the thinking behind where we are today.

There is another way to eat, I know, somewhere between industrialized, corn-fed fake food and fungus-ridden-today-we’re-eating-dirt-grown-your-own-grass food. There are farmer’s markets. Local agriculture. All that jazz. But that doesn’t take into account how people are going to eat during the winter, or those precious spring months when you’re growing what you’ll gorge on come end of summer. You end up eating a lot of turnips and jam and drinking a lot of vodka.

What”s on offer now is so damn good that’s it’s been a struggle to break the pizza-burgers-prepared-food-cycle. Taking that next step – the parsley-at-all-meals-turnips-all-winter step – is something I just don’t know that I can do if I want to continue to maintain a modern lifestyle.

There’s a better way to eat. And I’m still struggling to find it.

Tags: cookery, health, sugar sugar
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What We Eat

I made the switch to eating like a real person back in Chicago (I lived well in Alaska, too, but fell on hard times in South Africa where I subsisted mainly on peri-peri rice, spinach pies, and Woolworth’s prepared foods), but I’m still sometimes impressed at the amount of shrubbery that goes into the shopping cart each week.

The older (and creakier) I get, the more I pay attention to what I eat. Getting sick four years ago only made it easier to make the correlation between mood and what I was eating.

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Fitnessery

The long winter was rough on my fitness level and my jeans size, as I’ve noted before. When I realized two months ago that I’d gone up a size over the winter, I realized it was time to get my crap together. The problem is, it’s difficult to figure out the best way to get your crap together when you’re already working out several times a week.

For me, it’s about finding the right balance of intensity and endurance. For nearly a year, I’ve been up at 5:30 in the morning doing 30 minutes of pilates and free weights, but it was just so low intensity that about all it was good for was flexibility and casual activity maintenance. I was getting about 20 minutes on the elliptical a couple nights a week, too, but this was dramatically different to my workout back in November, when I had two solid 30-40 minute workouts through my day job fitness program every week (suspended in December), plus five days a week of pilates, plus biking to work five days a week, plus another 3-4 days on the elliptical. Good weather is good for fitness.

But if my fitness level drops, my mood and energy start going wonky, and it very quickly gets tougher to fit into my existing clothes – and we all know how much I hate shopping for clothes.

When I got on the scale a couple months ago, I discovered I’d gained a whopping 18 lbs over the winter. Seriously? I thought, in just four months? Besides the money-spend on clothes shopping (I’ve long given up hating myself over weight. It’s not so much asthetic as practical anymore), the frustration, for me, was the I just didn’t feel very good. I was having more trouble controlling my blood sugar, I was more down than usual, and I just didn’t have any energy. Going to bed at 8:00 pm sounded like a fine idea some nights. Not because I did anything exhausting, but because I felt depressed.

So, even with a modicum of fitness in the mix (30 minutes in the morning and 2-3 days in the evening), I was not at my best.

By concentrating on cleaning up my diet (oh, I do love that low-carb coffee cake, but eating one a week was a little much), I easily dropped 6 lbs in a couple weeks, but without the fitness part, I was still tired all the time, with wonky sugar, and still stuck buying new jeans.

It was time to mix up my fitness routine. The new day job was great for switching up my fitness routine, so when I started there at the end of March, I started biking six miles roundtrip. With all the lights and switcheroos, it takes about 20-25 minutes to get there in the morning and again to get home at night.

But this still wasn’t cutting it.

Pilates, relaxing as it was in the morning, wasn’t the best use of my time either. The great thing about my morning routine was that – unlike my afternoon elliptical slacking – I did it every morning without fail. So I needed something in that timeslot that was going to make the best use of my time.

See, I always put off changing my workout routines as long as possible because, of course, there are a couple days of insulin adjustment involved, and highs and lows and math and needles are always annoying at 5:30 in the morning (for those interested, the magic formula was calculating 10 carbs for breakfast instead of 12 and then rounding down the number of insulin units my meter calculated for me, unless my blood sugar is below 90 during my morning test, at which point rounding up is actually better).

So I went ahead and pulled out my copy of Jillian’s 30-Day Shred and said, “OK, it’s time.”(and if you think Jillian is like some Jane Fonda “squeeze your butt while wearing a leotard” thing, think again. Her videos are the closest thing to the tough-love circuit training I was getting at the POW gym back in Chicago, with the same immediate results).

This 25 minute cardio and strength routine regularly kicked my ass when I first got it, but I’d set it aside for awhile and moved on. So Monday morning I got up at 5:20 a.m. just to make sure I had enough time in case of sugar wackiness, changed my clothes, and got started. At the end of it, I realized that all that bike riding had indeed actually been paying off, because my endurance was much better than the last time I’d done the workout.

What I love about this routine is that the fitness, energy and endurance improvements are evident pretty much immediately. On day one I was bouncing around at 6:00 a.m. ready to start the day. By day two, I noticed a marked improvement in my bike riding and on day three the workout was already a lot easier. Last night, I noticed better definition in my arms, and this morning I stepped on the scale for the weekly weigh in and found that I’d dropped 2 lbs. Not bad for 25 minutes in the morning (and another 40-50 minutes a day of bike riding, of course, but the morning workout was the only thing I changed).

I also went ahead and took another look at my diet to make sure I’m making the best use of my calories. I made the switch from almond flour to soy flour, which has half the calories and only 4 more carbs per serving (and still less than half the carbs of regular flour). It’s also cheaper, so: win!

The last big push will be to break my new daily popcorn habit at the day job. We have a popcorn machine here at work, and I regularly eat 2 cups of popcorn as a complement to my lunch. That’s an extra 200 calories a day, which doesn’t sound like much until you realize that’s 4,000 calories a month.

It’s the little things, you know? They add up.

At any rate, this week has been bursting with far more energy and alertness, much improved sugar numbers, and a noticeable toning of my legs and arms, which has gone a long way toward improving my strength on the bike, too.

I’m still looking at trying to fit in at least two more workouts per week, preferably at the boxing gym downtown. Downsizing freed up some cash for J. and I and it looks like we’ll be able to start boxing classes next month. I figure that’s another 2 hours of fitness a week, which should be about right to get me to the level I’m most comfortable at.

It’s funny, you know, because there certainly is a genetic component to how *easily* one can lose weight. For those of us with the best of the survival genes, it’s not that we *can’t* be 150 lbs (or 185 lbs, in my case. I don’t ever want to see the tail end of 170 ever again), it’s that doing so requires a lot *more* effort than most people. In fact, I don’t expect to see that wishy-washy 185 by making these changes. What I want out of this is to get me at the fitness level I’d prefer and get me back into November’s jeans.

That’s it.

And to do that will require about 1.5-2.5 hours of exercise 5-6 days a week. That’s just how fun it is to be me. And probably another reason why I get so pissed off all the time when people assume that anybody clocking in at over 200 lbs must just be lazy and sit around eating donuts all the time. This is what it takes for me, personally, to clock in at around 200 lbs. More than that requires extreme self-deprevation of the 1400 calories per day and 2-3 hours exercise 6 days a week, and you know what? That’s not the life I want to live. I love my body. I love being big and strong and scary. If I’m too hungry to throw a good right hook, what’s the point?

I’m all about practicality, people.

Tags: fitness, health, sugar sugar
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Health Insurance Reform Passes

Freaking out? Here’s a great party-neutral fact sheet of what you can expect the next couple of years.

For me, this means I don’t have to spend my nights filled with terror about whether or not I’ll be laid off or how we’ll pay for J’s cancer scans. It means I’m not chained to a day job for the rest of my life. It means that if I do start to make it as a freelance writer, I’ll be able to afford to stay home and write books if I want to.

What a lot of people don’t realize is that the biggest dream I lost four years ago when I got t1 was the dream of being a full time writer someday (that, and being a licensed scuba diver. Needless to say, the writer thing was far more tragic). It’s going to be very interesting to see what kind of explosion in entrepreneurism we have now that we don’t have to be employed in order to afford healthcare.

Is it a perfect bill? Of course not. It’s going to be messy to implement, and people will freak out. It will be a rough ride. But when I explain the madness that was being uninsurable to my nieces and nephews in twenty years, they’ll look at me like we were some kind of crazy barbarians living in a madhouse distopia.

And, to be honest, if you had an illness like mine, if you fought with insurance companies the way I did, if you had to scream and cry and beg for care you were actually entitled to (let alone try to afford uncovered care) – you were.

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