life: super powers not included

Category — EM

Six Words

I was reading the New York TimesWell column where Tara Parker-Pope asked readers to sum up their mother in six words. Since Mother’s Day is fast approaching, I thought I’d give it a try:

Mother

With a word to spare.

What six words would describe your mom or motherhood?

And while we’re at it, add your personal health (fitness, nutrition, chronic pain, wellbeing or some aspect of healthy living) motto using six words or less. Mine:

Hottest

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May 5, 2011   18 Comments

My Day, The EM Edition

It’s 66 degrees in here. The fan’s on high so I can sleep through the night.

I wake up.NS14

My feet cool and I lower the fan to level two. My forehead goes numb.NS15

You can’t drink water like that.NS16

But you can work.NS21

My feet stop flaring and I scream Hallelujah and turn the fan off. It’s still cold in here.NS17

Eating requires unbuttoning.NS18

My hand gets hot.NS22

So I elevate it. And whine.NS19

Only I need to work. So I type. And it flares. I pout.NS20

Lather, rinse, repeat.

Speaking of sleeping through the night in my frigid room, which are you better able to fall asleep in: a warm room or a cool one?


*I have no idea why these photos aren’t clear. I think my room was too dark, but I was burning so I couldn’t get up to turn on another light.

*The red on my hand is the flare.

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April 6, 2011   43 Comments

My Life, Upside Down

Liv Tylersource

So I’m lying down with my feet in the air because that’s the only way the blood rushes out of my feet, and this feeling is better than sitting on a beach in Fiji with a piña colada and a slice of chocolate cake while getting sunscreened up by a hot cabana boy.

But laying on my back with my feet lifted above my head, while the highlight of my day, makes blogging kind of difficult. I need to glue my laptop to my pants, but I just don’t see how that would work in the long term. Laptops don’t go in the wash.

That’s why I’m going to close this laptop and wish you all a Tuesday in which you experience joy equivalent to the joy I feel with my feet elevated.

Because when I put them down? Guys, I’m not going to lie. I’m in pain. You can’t see my face, but this is what it looks like:

cat crysource

I’m serious.

Also, thank you for your tips and advice on yesterday’s post. I was sorry to hear I wasn’t the only one who got cheated by insurance.

Also, here’s a cute baby animal to make up for my Debbie Downer post.

20110306-024157Source
Hey, mama? I has no belly button!

Here, have another:

5472800451_a9e4c95faf_zsource
Excuse me, but does this sleepy kitty belong to anyone in here?

To the comments!
Share your funny stories or links so my upside down day can include a few laughs.

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March 29, 2011   19 Comments

Brrr…It’s Cold In Here*

Girl in cold

photo from we heart it
Well, that’s taking it a bit far, I think…

Friends, I finally have a reason to cheer. A new study says cranking the thermostat up in the winter may make people fat.

I might be sedentary…

My feet might burn like they’re stuck in boiling acid…

But, gosh darn it, I live in an icebox. Score!

Here’s the deal: Even without shivering, scientists say, people generate heat when the temperature is nippy. They think that’s because humans have this stuff called brown fat, which acts differently than normal fat. Normal fat stores energy and calories while brown fat consumes calories.

But in order for it to expend that deep-fried burrito you just ate, it needs a trigger—like cold temperatures. So, to activate your brown fat, you’d need to hang out in a 60-degree room instead of a 70-degree one.

Titanic Picphoto from we heart it
OK, well not that cold. Also: Jack! Don’t go!

The authors of new study say the trend to heat our homes in winter could factor into the obesity epidemic. Check out these statistics from the New York Times: In Britain, the average living room temp rose from 64.9 degrees in 1978 to 70.3 degrees in 2008.

And get this, according to a researcher in the New York Times article:

“When we put people in a 60-degree room, they increase their energy expenditure by 100 or 200 calories a day if they’re in light clothing,” like hospital scrubs.

First, I’ll say neener, neener, neener. (Oh, come on. When do I ever get to brag about EM life actually benefiting me?)

Second, I’m dropping the temp even lower. Why, hello, 63.

At what temperature do you keep your home?

*Does anyone else instinctively want to respond with: There must be some Clovers in the atmosphere? Or am I the only one with a Bring It On cheer permanently stuck between brain folds?

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February 2, 2011   27 Comments

When I Snap, Nothingness Bursts Into Flames

Hands on firefrom we heart it

I talk a lot about my feet and the burning. And, to be honest, it’s the worst pain I’ve ever felt. Even with pain meds, I’d rather get a cavity filled without Novocain instead of burn like this.

The thing I rarely mention are my hands. See, they burn, too. They don’t hurt in the same way my feet do, though. My feet feel like someone’s stabbing me with a steak knife while I’m on fire. My hands feel like I had a bare-handed snowball fight for an hour and am now thawing them out under hot water. Not pleasant, but preferable to burning.

Or, for the visual among you, this is my feet:

Burning Feetfrom we heart it

This is my hands:

Burning handsfrom we heart it

So you can see there’s significantly less fire with the hands. Those are scientific photos, too.

Right, so all that is to tell you I’m not posting a real blog post today because my hands have been flaring on and off all day. To retaliate, I’m punishing them by not typing because that makes them flare worse. (It’s like a mini workout for the fingers.)

And you don’t have to tell me: It’s quite the inconvenient condition to have for a writer.

See back here tomorrow when I post something useful.

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January 18, 2011   21 Comments

The Latest Thing EM Has Taken From Me

Restaurant mealphoto by swami stream

Thank you all for your kind words on my post yesterday. I’d hate for you all to think I’m some sort of strong, resilient woman when it comes to my health.

Fact is, it’s hard. It sucks. Most days I get through it, but there are days where I don’t understand it at all. Yesterday was one of those days.

You see, I can’t leave the house without flaring. Without unbearable pain. For a while, the only thing I could do was go out to eat since there I could put my feet up. And eating was just sitting.

Then yesterday happened. The Man and I went out to a restaurant—pathetically, my biggest excursion in a long time—and I flared. My left foot just went wild.

That was it.

The EM has taken away my ability to stand, to walk, to cook for myself, to clean my own house and to shower without excruciating pain. It took me away from my family during the holidays. And yesterday it took away my ability to eat out without pain.

Guys, I don’t get like this often on the blog. But I’m just going to say that yesterday was made of 100 percent suckitude.

See? I’m not strong. I break down. I curl up in a ball and wonder why this is happening.

Tomorrow I’ll be back with a typical post (we need it, huh?) but I thought you should know that your assessments of me yesterday weren’t entirely true.

Now you know.

Q4U: What’s the best funny movie you’ve seen recently? As you can see, I could you a good belly laugh or mindless two hours of romantic comedy.

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December 29, 2010   27 Comments

The Greatest Show On Earth

Circusphoto by shironekoeuro

Ladies and gentlemen, children of all ages! Step right up to see the most amazing, most crazy, most death-defying show on earth.

Prepare to be amazed! Enlightened!

I present to you—never before seen on this blog—the girl on fire:

EM Flare

That’s right, this is the look of erythromelalgia. (Or, as I lovingly call it, EM.) You’ll notice that one foot is normal and the other is in a full-fledged flare.

Oooh, the burning!

Ahhh, the pain!

Grab your peanuts and your cotton candy as she lights the stage ablaze. Get mesmerized by the fireworks!

And that, dear friends, is what I’ve been up to today.

Come back tomorrow for another AMAZING! and TERRIFYING! circus spectacular.

So, um, how was your Monday?

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December 28, 2010   29 Comments

I Might Be Cranky…

Marcona almondsphoto by elana’s panry

Thanks for all your get-wells yesterday. The migraine has finally been banished. It’s funny, too, because I much prefer my other type of migraine—you know, with an aura of flashing lights, blindness, and total numbness over the left side of my body—to the kind that splits open my skull. Aside from the fact that migraines with auras never fail to make me think I’m dying, the headache is actually more mild than usual.

And, yes, I rate my headaches. Because that’s what you do when you get so many. You start to play games. (That, and this.) It’s sick. Sick, sick, sick.

Anyhow, this week I’m embarking on an anti-inflammatory diet in the hopes of making my treatment for Lyme more successful.

I’ll start with a few things:

1. I’m not sure if this diet will help in any way, but at this point I’m willing to try anything to make these freaking hands and feet stop burning.

2. I am not a diet kind of girl.

3. I’m not doing this to lose weight. I don’t think that’d be a good idea since it’s really restrictive and your life would be a lot less fun.

So, yeah, this should be a tough project. But, really, what is more fun than having aching knee joins, chronic headaches, and appendages that burn with a fiery passion? Nixing most foods from your diet, of course.

The diet works in four phases, the last of which is generally just clean eating. You’re supposed to keep it up until you’re healed—or eternity, whichever comes first.

I’m in the first phase right now. It’s the “let’s rid your system of a dependence on absolutely everything that might aid inflammation” phase. It’s also not fun. At. All.

There are only six fruits, a dozen or more veggies, some nuts, eggs, and a handful of fish I can eat. My grain selection consists of brown or wild rice. Thank goodness I can eat oil and vinegar, some herbs and salt. Let’s just say it’s day two and I’m already bored.

The tricky part is packing enough to eat for breakfast and lunch at my desk. I’m naturally a big eater (much to The Man’s disappointment since he’d like to finish my meals instead of fight me for the last bite) so packing large enough meals in is tricky, especially as the week wears on.

Case in point: Breakfast on day one was a Naked juice drink, some almonds and walnuts. Lunch was a salad with arugula, carrots, cucumber, and green beans. With a side of celery dipped in almond butter and some almonds on the side.

By the time I got home that night, I never wanted to see another almond again. Only I had to the next day when I was hungry between meals. I’m also sick of arugula. I’m borderline sick of brown rice, but it’s still in my good graces because it’s the only carb I have.

(Full disclosure: I caved Tuesday morning and had toast for breakfast when my stomach was churning. I figured one failure was better than puking at work.)

Phase one only lasts a week—thank goodness—by which time I will have added tilapia, asparagus, rice, and juice to my “I can’t ever eat this again” list.

Mercifully, phase two brings back many of the foods I usually eat. Minus the sugar. Evil, I know.

So tonight, I’m having a repeat of last night’s meal: tilapia cooked with olive oil and salt, brown rice, and roasted asparagus. I might even drizzle some sesame oil on top because A. I’m allowed to and B. it’s the most flavor I’ve had since the berries I ate this morning.

Sigh. It will be all worth it if I’m eventually healed.

Until then, I’ll be dreaming of red velvet cupcakes. And cheese. And iced tea…

Has anyone else gone on a restrictive diet for a week? What helped you beat the temptations to stuff your face with three-cheese pizza?

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November 3, 2010   25 Comments

A Girl Walks Into A Doctor’s Office…

Grass at Sunsetphoto by jens dahlin

I was going to spend today answering all of your questions but then I remembered I owed you an update on my doctor’s appointment on Friday and I thought, “Hmm, what’s more exciting? Slightly serious, even more goofy answers to reader questions or a story about a doctor’s appointment?”

Interestingly, I went with option B.

As you know, I was off on Friday because the new doctor I am going to is an hour away. (Not to be confused with Dr. Evil who mocked my pain (anyone else think of Princess Bride here when Buttercup tells Wesley—then disguised as the Dread Pirate Roberts—that he mocks her pain? Maybe it’s just me. I’m obsessed enough with that movie to give a reference to it its own double parentheses.) by saying the best way to treat EM was to sit on my butt all day)

Anyhow, it was glorious because I got to sleep in until 9 a.m., which, while early, is three hours later than I normally get to sleep on Friday. And at this point sleep is the highlight of my work week.

So The Man and I drove out to the doctor who reviewed my symptoms and tests. Apparently I’m loaded up with vitamins, except for D, which I was crazy deficient in. (On a scale of 32 to 300, most people are deficient; my level was 16.) Anyhow, vitamin deficiency is not the culprit. (*insert sad face here.*)

However.

Crazy Cute Baby Deerphoto from patricia lazar
Oh. My. Goodness. It’s adorableness is outrageous.

He believes I have Lyme disease. I KNOW.

I’ll start by saying I don’t remember ever getting a tick bite, but then again I never really looked. Besides, ticks on the back or head are hard to catch. Not only that, but what my doctor didn’t know at the time is this: I grew up in Connecticut, not to far from Lyme, Conn. Which, as you might be able to guess, is where the disease first showed up.

So, yeah, Connecticut and Massachusetts (where I later moved) and Cape Cod (where I vacationed yearly) and basically all of New England are infested. So even though I don’t remember it, it’s not too much of stretch to see how I could possibly have been bitten by a deer tick.

On top of that, my hair analysis (for which I had to chop off way too much hair) says I have high mercury levels. I do have metal fillings. But, still, I’m not really sure how the mercury toxicity happened. Unless The Man is putting something other than stevia in my iced tea. Always a possibility with those men.

So that’s the theory right now. I’m sure I’ll have more for you as we pursue the diagnosis, but for now all I can say is this: It’s good to maybe have an answer to the big, fat WHY??!?! question. It’s scary to think of how severe the treatment can be. But I’m trying not to think that far ahead.

For now, a maybe answer is enough.

And with that, I’m going to eat more celebratory chocolate.

What? It’s a celebration.

Totally Unrelated Question of the Day*: Would you rather have horns in the middle of your forehead or two little legs hanging from your chin?

*My absolute favorite “would you rather…” by the way.

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October 18, 2010   29 Comments

That Thing Called Sleep

Burning During Sleepphoto by anna gay

You know, here in D.C. Columbus Day is a bona fide holiday with no work and everything. (I swear, these federal employees even get Thomas Edison’s sister’s birthday off.)

So while I’ll be working today, the blog is taking the day off.

Because I spent Friday up all night burning and burning. And just when I got my feet to calm down enough to go back to sleep, I’d wake up an hour later burning.

Because I woke up repeatedly throughout the night on Saturday with burning feet. And elevating and blasting the fan at them wouldn’t cool them down. There were pockets of sleep and long stretches of fiery pain.

Because I’m tired. And tired of EM.

I’ll be back with something real to say tomorrow. And let’s hope I can sleep through the night again soon.

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October 11, 2010   11 Comments

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