Hot Chocolate with Cheese: A Brief History of My Least Favorite Medication

I’m sitting in my kitchen, trying not to add Parmesan cheese and a shot of vinegar to my hot chocolate. A month ago, the thought of this bizarre concoction would have made my stomach turn somersaults. But after three weeks of high dose steroids, all bets are off.

 

Corticosteroids (not to be confused with the kind of steroids used by that guy you always see at the gym whose arms look like they ate a fellow Planet Fitness member) are the Tiger Balm of “hardcore” medicine; they’re used to treat everything from poison ivy to cancer to autoimmune disease.

 

When I go to my doctor at the first whisper of a lupus flare, I know she will call in prescription for steroids. Cortisone, a synthetic form of a hormone that naturally occurs in the human body, will fight to squelch the inflammation causing my symptoms – while making my face blow up like a basketball and my hair fall out in clumps.

 

Steroids are the standard first line of defense against a lupus flare and have been for nearly seventy years. Before the discovery of steroids, half of all lupus patients died within the first five years of their illness.

 

Cases of lupus were documented as early as ancient Greece, but scientists didn’t discover methods of treating it until the twentieth century.

 

The first arthritis unit in a hospital with a special interest in lupus was founded in 1932 at Massachusetts General Hospital by Dr. Marion Ropes.

 

M0008880 Emperor visiting sick people - plague

Imagine a room full of forgetful people who hate mornings and don’t remember if they took their arthritis meds or not.

 

Half of Dr. Ropes’ patients got better and half died during the first two years of treatment. After years of observation, she was able to identify two types of patients- those with organ threatening disease, and those with lupus that mainly affected their skin and joints. Although she was able to predict which patients would die, she was unable to save them…

 

..until…

superman

Dr. Philip Hench, the only rheumatologist to win a Nobel Prize in Medicine, used the newly discovered hormone cortisone to treat lupus in 1949.

 

If anyone on the Nobel committee was on corticosteroids themselves, they never would have voted for Dr. Hench. Instead, they would have gone back to crying over their pretzels dipped in chocolate ice cream while watching Lifetime movies and shooting up insulin.

 

So here I sit, seventy years later. A cup of hot chocolate in front of me. A face that stares back round and pudgy in the mirror. Probably a half dozen strands of hair on the floor. At least I didn’t develop diabetes like I did the last time I needed IV steroids.

 

“How are you doing today?” my best friend had texted me earlier.

 

“I hate everything,” I replied.

 

Did I mention that depression and irrational irritation are just one more lovely side effect of this delightful medication?

cranky

 

Over the years, I’ve reconciled my distaste for steroids with the knowledge that if it weren’t for this life-saving yet truly obnoxious drug, I wouldn’t be here today. Maybe steroids transform me into a fat, bald, irrationally irritated women who might stab you with a fork for standing between me and my cheese-flavored ice cream. But even a woman who adds Parmesan and vinegar to her hot chocolate is in a better place than a woman who can’t get out of bed.

 

I will spend the next few months slowly tapering off this terrible miracle drug- a process as frustrating and uncomfortable as starting them in the first place. As my face grows round and my clothes start to fit awkwardly, I will wish, like I always do, that I’ll never have to see one of those white oval pills ever again. But sometimes you have to swallow the poison to kill to demon within- and there’s no point in complaining about that.

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Hair Today, Gone Tomorrow

The first time my hair started falling out in chunks, I didn’t notice until it was too late. I was twenty-one and in my first year of grad school. My roommate at the time pointed out the strands darkening the corners of the bathroom and the water clogging the bathtub. By the time I realized I was seriously ill, I was vomiting each morning, struggling with short term memory problems, and occasionally passing out in practice rooms from extreme fatigue. That first brain flare finally dwindled to a close after a year and a half.

 

Hair loss is the often the first sign of a lupus flare- the first whisper that something might be wrong. Sometimes when I’m very sick, lupus causes clumps of my hair to fall out. Other times the hair loss is more discreet; individual pieces of hair slip away from my head and convene in piles on my bathroom floor. Diffuse hair loss, my doctor calls it.

 

Five years after my first flare and subsequent diagnosis, my hair again started thinning. I’d lather shampoo into my scalp in the shower and come away with a handful of brunette muck. As a joke, I would snap pictures of my lost hair and text them to my then husband with captions like “hair today, gone tomorrow” or “hairesy”.

 

When I abruptly lost my ability to walk one day a month later, I recognized the hair loss and increasing fatigue for the warning signs they were. My second major flare was far more severe than the first. The inflammation in my brain wrecked my sense of time and space, my short and long term memory, my ability to articulate my thoughts verbally, and my gross motor skills. I even lost sensation in my left arm. I woke up to it one morning flapping wildly by my side without my permission.

 

Aggressive medical treatment saved my life. My hair never fully recovered. I wore hats for over a year to cover the bald patches. When my hair finally grew back enough to go out in public without small children running from me in terror, it was still thin enough that I stopped needing to brush it.

 

A few weeks ago, my friend climbed into the passenger seat of my car on the way to our lupus support group meeting. “Is your hair different? It looks…um…thinner,” she said.

 

Sometimes, it takes a friend to alert you to a hairy situation.

 

Over the next week, fatigue trailed me throughout the day. I struggled to remember what day it was, and I noticed that keeping my car between the lines on the highway required more concentration than it should.

 

My doctor recognized the beginning of a brain flare and ordered an IV of steroids at my next appointment.

 

“I don’t think this one will be like the last one,” she said. “It’s good that we caught it early.”

 

Four weeks of high dose steroids, and then another six months to taper off of them. High doses of immunosuppressants for the foreseeable future. I need help cleaning my house and grocery shopping, but I’m well enough to work. My memory is fuzzier than usual, but I can still think and act like myself.

 

I never thought I would feel grateful to be losing my hair. As I sit on my couch, tired and weak but able to write, think, and plan lessons, I reflect on how lucky I was able to spot the tip of the iceberg before it took out the entire ship.

 

Sick Girl Superpowers

Last night, I sat on my bed and refilled my blue and white pill pouch with the days of the week printed on each zippered pocket. This weekly ritual involves tipping a handful of pills from the bottle to my palm and then filling each pocket, all while warding off two dogs who refuse to accept my decision to use my hands for tasks other than petting them.

 

Eight years of living with a serious illness means hundreds, probably thousands, of pills have passed through my hands. As I poured a handful of pills and transferred them to the corresponding pocket, I noticed that each time, the pills magically seemed to add up to the exact number that I needed without my counting them.

 

I finished tucking the last of the pills into the pouch, considering the many ways lupus has altered my habits both consciously and unconsciously. Like slipping into a mask and oxygen tank and diving off the edge of a boat, a chronic illness shifts your perception of the world. Suddenly you see parts of life that you never knew existed, and as you adapt, you gain abilities you never realized you needed.

 

Here are a few sick girl “superpowers” that I have honed over the years:

 

The self-control to ignore disemboweled stuffed animals, piles of hair, and layers of dust worthy of an archeological excavation that have accumulated on my floor over the past two months.

 

The ability to stare through the dirty dishes overflowing in the sink without flinching.

 

The ability to balance my computer on my stomach and two pillows at just the right angle to use while lying down.

 

The knowledge necessary to identify whether a doctor is a good egg or a bad egg -Willy Wonka style- in ten minutes or less.

bad egg

 

The calm and groundedness to identify the part of my brain that has stopped functioning using the parts of my brain that still work.

 

The experience to a answer the insurance company’s recording without being prompted and get to speak to a real person rather than a robot every time.

 

The ability to swallow a handful of ten pills or more in a single gulp.

 

The knowledge to scan a blood test with the proficiency of a nurse.

 

The power to forget unimportant things with the aptitude and frequency of someone many times my age.

 

The ability to find joy in the sunlight and in the warmth of a sleeping dog on a day I’m too sick to get out of bed.

 

If you have a chronic illness or a recurring challenge in your life, what “superpowers” have you developed in response?

 

Inside a Lupus Support Group

One of the best and most fun decisions I ever made was to join a support group for people with lupus.

support group

 

At the time, I had just moved back to the state where I grew up after graduating from school. I knew people in the area, but didn’t yet have a lot of friends my age or anyone I felt comfortable telling about my disease.

 

I’d always thought of support groups as a bunch of really emotional people sitting around crying about their problems. Did they really all hold hands and sing kum-bai-yah like in the movies? I needed to talk to someone who could relate to what I was going through, but I wasn’t sure a support group was for me.

 

kumbayah

I don’t even know the words to kum-bai-yah.

 

A quick Google search led me to the Lupus Foundation of America’s Houston chapter. The support group coordinator, Linda, sounded fairly down-to-earth over the phone.

 

“We meet once every two months. It’s hard to get people together more than that,” she’d told me.

 

We chatted a bit before I got off the phone about our symptoms and serious flares we’ve had. Linda had survived a neurological flare like me and had had some issues with her kidneys. Her straight-forward manner and unemotional recounting of the facts of her illness put me at ease. She spoke about her disease in the same way I spoke about mine.

 

“We’re not complainers here,” she would laugh over a glass of wine when I met her in person.

 

The first meeting I attended was the annual Christmas party. I dragged my husband along with me to a trendy Italian restaurant with exposed brick walls and candles flickering on each table. I greeted the four ladies sitting around a bread basket. I was the youngest by about fifteen years. An angry red surgical scar snaked up the arm of the woman across from me, but everyone else looked normal- just like me.

 

We chatted and laughed. We exchanged the ten dollar gifts we had brought and someone accidentally lit some red and green tissue paper on fire.

 

CakeFire

 

As it turns out, a support group with pyrotechnics was exactly what I was looking for.

 

I returned to support group nearly every meeting after that. To my relief, nobody ever cried. No one wallowed in self pity.

 

Nobody even holds hands, because we all have arthritis and are afraid of germs.

 

I’m not sure why I was so surprised that all the other women with lupus were… well… just like me.

 

At each meeting, Linda passes out an itinerary listing Lupus Foundation events and symptoms to watch out for. We focused on kidney disease one meeting, then neurological issues the next. She arranged for a holistic health practitioner to come in and talk to us about inflammatory foods. Two meetings later, a rheumatologist came to teach us about autoimmune diseases and answered our questions.

 

Nobody whines, but we do spend time talking about our symptoms and their impact on our lives. When I had issues with insomnia, joint pain, or explaining my disease to family members, the other ladies had answers. I learned the name of the best over the counter sleep aid. They gave me advice on which vitamins to take.

 

Over time, I slowly stumbled onto the true definition of a support group: A group of smart ladies who have been down the road you’re traveling and can tell you where the potholes are.

 

A woman who was just diagnosed recently joined our support group a few months ago. Although she’s older than me and has kids, she reminds me of myself when I was first got sick. She’s tough and tries to push past the fatigue and pain to continue working. She doesn’t want to complain, but she needs someone to talk to. She’s not a whiner. She lives near me and has trouble seeing at night, so I pick her up and we stop at Starbucks on the way on the way to meetings. Chatting with her about symptoms and life in general makes the long drive fly by. When we don’t finish our conversation by the time we get home, we go out to dinner later that week.

 

Being newly diagnosed can be isolating and scary, and she has lots of questions. It feels really good to sometimes be able to answer them.

 

Harvey

I sit in a straight backed chair in my living room as the rain pounds against my ceiling. The storm rages and slams against the door. A flash of brilliant white illuminates my living room as thunder rattles my windows like they’re made of paper.

 

Saturday night around 1am, I peeked through the blinds in my living room to see an angry brown river where a road had once been. Water lapped at the waist-high concrete ledge separating the street from the condo below me, spilling over into our lawn. Across the street, cars gathered in the parking lot between the Auto Check and Tony’s steakhouse. I imagined the passengers inside sloshing through the water in their living rooms carrying photo albums, computers, blankets, food to their cars. How much time did they have before the water reached their knees? Their waists? The pictures on the wall? Two teenagers huddle under the awning of a cafe against rain that slants sideways. A man sat in his car with the lights on and his little girl in the back seat. What words do you say to your child while you idle in a parking lot as your home is being destroyed?

 

This is the safe part of town.

 

If being Texan exists on a spectrum, with dinner plate sized belt buckles, driving your truck to church once a week and to the rodeo once a year on one end, I would be cringing far away on the opposite end. I wear James Avery and have never been able to banish the word “y’all” from my vocabulary, but that’s as far as it goes. I lean left politically, hate country music, and prefer Kroger’s to HEB. When someone discovers I’m a musician and asks me if I play fiddle, I pretend to not know what that means.

 

When I was eighteen, I left Houston for college in New York and then Connecticut. I’d grown up in a suburb of a big city with a small town vibe. One main road into town flanked by a dozen churches. One high school with five football teams. Primarily white Christian guys who went “huntin’ and fishin’ “ on weekends. No sushi. No Starbucks. Nothing open pastt 10pm.

 

I couldn’t wait to leave.

 

I moved back after graduation -reluctantly- to get married and settled down in a different part of Houston. A year after the divorce, I’m still here. I “treasure hunt” at the Goodwill near my house some Saturdays. I chat with friends over steaming bowls of pho at a Vietnamese noodle place a few streets from my house. I bring my computer to the teahouse two blocks away and sip sweet milk tea with tapioca balls when I want to be alone, but not at home. I cheer on the Houston Symphony like it’s my favorite sports team. When my best friend visits from Seattle, we chat and stroll along the Kemah Boardwalk, watching the seagulls dip in and out of sight. I show her the the art installations at Discovery Green, glowing paper flowers and a canopy of light that breathes like a flock of fairies in the breeze. We point to fresh scallops, pink crab legs, giant shrimp freshly plucked from the sea at Pier 8, then sit on wooden benches dipping whatever we can reach in cocktail sauce. Every time we talk, I tell my friend to move here because there’s so much work for musicians. She laughs and says, pointedly, that Seattle could use more viola teachers. We seem to have reached an impasse.

 

I haven’t left my condo in five days. The drumming on my roof slows, then stalls, then starts again and doesn’t stop. I can’t stop checking Facebook. A teacher I know, respected and well-liked in our community, posted a public plea for help as the flood gushed into her home. Water rose in my friend’s house until he was trapped on the second floor with his fiance and dog. They waited for a break in the rain, waded through the first floor, and walked to higher ground to be rescued. A colleague’s student and his family crowded into a van to evacuate, but drowned as the torrent whisked the van into a ditch. Two great-grandparents and four children dead. So many posts by Houstonians clinging to their roofs begging to be rescued that I can’t count them all.

 

I only want to read about Harvey. I don’t want to hear about my friend’s new job. I skip over every political post. Nothing matters but the flood, the rain, the people all around me.

 

By definition, I’m a Texan. I was born and raised in the city I now call home. Yet somehow, the word Texan always seemed to fit like a shoe one size too big. When I look around at the muddy streets, the tired but hopeful faces of my neighbors, the piles of debris littering the sidewalks, I have to ask:

 

If this isn’t really my home, then why does it hurt so much?

 

The Inflatable Hair Wash Basin

At a time when my peers were sporting fitbits, touch screen computers, and Phones that did everything but tie your shoes for you, my prized possession was my inflatable hair wash basin.

 

An inflatable hair wash basin is a plastic tub that can be filled with air like a kiddie swimming pool. After you inflate it, you fill it with water. It has an opening for your neck as well as a hose with a plug to drain the water after you’ve used it. The one I used was surprisingly airtight; in six months, it never leaked once.

 

I used a hair wash basin during my brain flare in 2014. I ordered mine from Walmart a few days after I realized I was too weak to make it in and out of the bathtub on my own. It cost about $30, and second day shipping doubled the price. But as any woman knows, you can’t put a price on clean hair.

 

If you find yourself in a situation in which you’re too sick to sit or stand but have retained your sanity enough to still want hair that isn’t moldy, this is the product for you. Think of it as an inflatable emergency raft that transports you safely through the disease-ridden waters of stuck-in-bed to the land of good hygiene.

 

My feelings towards my inflatable hair wash basin are probably similar to emotions I would have towards an actual inflatable emergency raft. I would never want to use this product unless I absolutely had to, but since I have to, I am unbelievably grateful for its existence.

 

I retired my inflatable hair wash basin after six months. My legs slowly grew strong enough to carry me to places that I had missed dearly for the better part of a year, including my own bathtub. My mother deflated it and folded it back into the cardboard box it had come in, no doubt hoping to to tuck it away in the attic along with memories of worried doctors and 3am trips to the ER.

 

I carried it with me when I moved. It sits on a shelf in the back of my closet. Sometimes I see it when I reach for a lightbulb or blanket and smile a little; oddly enough, it’s special to me and I don’t want to throw it away. As every sick girl knows, it’s bad luck to get rid of the things you needed when you were sick. All you can do is hope you never need them again.

 

How To Change the World When You Don’t Have the Energy to Clean Your Own House AKA How I Ended Up With a Three-Legged Dog

Let’s face it: it can be to hard to keep up with your 5k running, Tiki-torch-Nazi-fighting, volunteering, organic composting friends. You’d love to march, but doesn’t that usually involve standing for long periods of time, being out in the hot sun, and doing other healthy-people things? Gardening sounds cool- it’s sustainable, you know there’s no harsh chemicals in your cucumbers, and it would be great to rely less on supermarket chains. But your knees and hands aren’t up for getting out of bed, let alone pulling weeds in the backyard. Also, don’t you have to remember to water them occasionally?

 

piggyback

I’d totally do a 5k for charity if only someone would carry me on their back.

 

When being sick takes up most of your time and energy, but you care about social issues and preserving the environment, you have to get creative about contributing to a cause that speaks to your heart. Here are some little things you can do that don’t require much time or energy while still making a big impact.

 

Donate Money

Assuming, of course, you have money. Personally, I don’t. But if you do, here is a great site that will connect you with some reputable charities that will gladly take it:

 

Purses for the Homeless

Step 1: Pull a couple of old purses out of your closet. Or new ones, like that ugly thing your great aunt sent you for Christmas two years ago that still has the tags on.

 

Step 2: Fill the purses with tampons, pads, granola bars, water bottles, Tylenol, band-aids, soap, and hand sanitizer- anything a homeless woman might need. You can get most of this stuff at the grocery store or the dollar store.

 

Step 3: Keep the purses in your car. If you see a homeless woman when you’re out and about, roll down the window and pass her a purse.

 

Variation: You can do the same thing with plastic grocery store bags.

 

Amazon smile

We all love amazon.com. It’s your favorite place to buy nose-hair trimmers, pregnancy tests, and anti-fungal cream.

 

embarrassed-bear

Hey, no one’s judging.

 

Just select a charitable organization at smile.amazon.com and then continue to buy all the wart remover, prescription strength deodorant, and copies of Fifty Shades of Grey you normally would. Amazon will donate a portion of your purchase to the organization you chose. Mine goes towards homeless puppies and kitties.

Donate Clothes

Schoola is by far my favorite place to send gently worn clothes. Malala Yousafzai, a woman so badass a bullet to the head only made her tougher, founded this charity to raise money for girls’ education.

Gather some used but still fabulous clothes, then print a label from the website here.

Fill a box with clothes that are in good condition, slap on the label, and bring it to the post office.  

malala

I always imagine Malala herself opening my box and being impressed by my impeccable fashion sense and generous spirit.

 

The clothes are sold online at schoola.com. Schoola donates the proceeds to needy schools.

 

Use biodegradable plates.

I’ll let you in on a little secret: When I’m not feeling well, I use paper plates instead of real ones. Even during the best of times, my motivation to wash dishes is decidedly below average.

 

Don’t worry, though. I use the type of plates that will sprout into a beautiful flower in the middle of a landfill someday (or however that works). Sheesh. I’m not a complete heathen.

 

Recycle.

You’ve been hearing about this one since the third grade, so I’m not telling you anything you don’t already know.

 

However, if you’re like me and live in a city without recycling pick-up or live on the second floor and aren’t up for carrying boxes, let your boxes pile up in the pantry. Then guilt your friend who works out into taking them to the bin the next time he’s over.

 

Call your senator or elected official.

Washington, D.C. isn’t Narnia. What’s decided there can affect your immigration status, your income, and your health insurance. Our elected officials are obligated to legislate with our best interests in mind, but they’ll never know what we need if we don’t tell them.

 

Think you’re too sick to talk? Just remember: when you’re deliriously out-of-touch with reality because of a fever or brain inflammation, your call will be that much more memorable!

 

In all seriousness, though: You might not have energy. You might not have money, a job, or your health. But you do have a voice. Use it.

voices

 

Adopt a shelter dog, but choose a really lazy one who just wants to cuddle in bed all day.

You may think I’m joking about this one. I’m not. Three years ago during an especially rough fatigue flare, I glanced down at my phone and saw an email from Houston Poodle Rescue, where I had adopted my first dog. Too exhausted to do anything else, I scrolled through pictures of dogs that had been at the shelter waiting for their “forever homes” for two months or more.

 

One of the dogs had a stump where his front paw had once been. He stared bleary-eyed into the camera. Everything about him looked just a little sleepy. He didn’t strike me as the type of dog who liked to go running and play fetch.

 

Maybe I’d finally found a dog who could keep up with me.

 

I showed up at the shelter a few days later.

 

“I’m just here to look,” I told the lady behind the front desk.

 

“Sure you are,” she’d nodded knowingly.

 

As soon as I picked Wilbur up, he wrapped his little front legs around my neck and gave me a doggie hug. He continued to hug me for the full hour I stayed at the shelter. When it was time to leave, I just couldn’t seem to put him down. Luckily, neither my husband at the time nor our other dog objected when I waltzed in the front door carrying a dog.

 

Technically, it was only ¾ of a dog.

 

Three years later, Wilbur still hugs me everyday. We have many common interests, including lying in bed all day, sitting on the couch, sleeping, and snuggling. The three-legged dog turned out to be the perfect dog for me.

13 Reasons Why (You Should Go to the Lupus Walk)

1. You can get some exercise. Full disclosure: I’ve never actually crossed the finish line at the lupus walk (because I have lupus). I mostly show up an hour late, sit in a lawn chair, and eat the free breakfast tacos and muffins. I’m only speculating about the exercise part and can’t speak from experience.

This year’s walk takes place at Walter Hall Park. I wasn’t able to find out exactly how far we’ll be walking, but it’s usually 3-5km. Don’t feel like walking that much? Sit with me and eat tacos.

You can look up the route here and Walter Hall Park here.

2. You get to meet lots of people with lupus. People with lupus are known for being really fun to hang out with. If you don’t believe me, you can ask my mom and my best friend.

3. People with lupus tend to have memory problems. If you wear an ugly tracksuit, we will absolutely forget about it the next day.+

little-britain

 

4.You get a free T-shirt (if you register and pay the $20 registration fee). Register here.

5. You can bring your dog. In fact, you can even sign your dog up to walk under the LuPAWS registration for $10 and get a bandana for your pet to wear. My dogs go to the lupus walk every year to be supportive (and because they also like tacos).

doglupus

6. The Galveston Walk is called the “Walk to End Lupus NOW.” I’m always intrigued by the “NOW” at the end. If I finally manage to cross the finish line, will we all suddenly not have lupus anymore? Will we magically transform like The Beast did when the last petal fell off the enchanted rose? This remains to be seen, but at the very least, we will have raised money and awareness for a worthy cause.

7. Did I mention breakfast tacos?

taco

8. You can help raise money for people with lupus. Funds raised go towards research and providing medication for patients who can’t afford it.

9. You don’t have to have lupus to participate. Lupus isn’t contagious, so you will still not have lupus when you leave.

10. You can brag to your friends about how productive you were on Saturday morning. You can exercise, raise money for charity, and eat a healthy breakfast- all before 9am. (The walk starts at 7:15am).

11. You can also show up much later than 7am. Anyone who knows me is aware that the only reason I’d ever be out of bed at 7am would be if my house caught on fire. I’m definitely not going to be lacing up my running shoes at 7:15am. I typically show up fashionably late around 8:30 or 9- and you can, too!

12. Participating in lupus walk helps you understand lupus better as well as increases awareness of the disease in the community. If I could pinpoint the one thing that would most improve my life as a lupus patient, it wouldn’t necessarily be better medication. It would be awareness. Having to explain over and over why I don’t do mornings, why I can’t be around you if you’re sick, and how I actually do have a real illness even though I “look fine” is exhausting. If everyone took one small step to educate themselves and others about invisible illness, the lives of sick people everywhere would be just a little easier.

13. Walter Hall Park is full of pokestops. If you visit enough of them, you might even get a king’s rock or metal coating to evolve your onix or polywhirl right in time for the Rock Pokemon Migration- umm…I mean…that’s what someone told me. I don’t play Pokemon Go myself.

pikachu

The Five People You Meet When You’re Sick

Disease Fetishists

Favorite Phrase: “I could never be as brave as you. You’re such an inspiration!”

There’s a line between expressing recognition of someone’s perseverance in the face of adversity and gushing about their bravery in getting dressed and leaving the house like everyone else. Disease fetishists flirt with this line in every interaction with you.

 

Are you able to work despite being sick? You’re not just trying to pay the bills; you’re a shining example of dedication and perseverance.

 

Remark that it’s a nice day outside? Your ability to find joy in the little things despite the crippling pain of your everyday existence is a lesson to healthy people everywhere to put their problems in perspective.

 

Choose the sugar free latte over the one that gives you a migraine? You’re not just being sensible- you’re a goddamn pillar of self-control.

 

I don’t always want to be an example, and I don’t need a little voice following me around heaping praise on me for being brave enough to do my laundry.

 

laundry

For me, laundry tends to be less of an act of bravery and more of an act of desperation.

 

How should you treat the sick girl in your life? Just like anyone who has problems in their life. In other words: just like everyone else.

 

Sympathy Addicts

Favorite Phrase: “Oh, you poor thing!”

The typical sympathy addict can be found with a box of tissues in the front row of a theatre immersed in a tear-jerker about two teenagers with cancer who fall in love. You can’t check her facebook page without seeing pictures of her visiting a nursing home displayed prominently. When she hears through the grapevine that you’re sick, she’ll overwhelm you with cards, emails, and requests to visit, even though you’re barely more than acquaintances and haven’t seen her in over a year.

 

What seems like kindness at first glance reveals itself to be something else entirely upon closer inspection. The sympathy addict gives not for the sake of giving, but to satisfy some bizarre emotional craving. Some sympathy addicts want to (often publically) pat themselves on the back for their boundless charitability in thinking of the poor sick girl. Others crave a hit of tragedy that they don’t get enough of from a Nicholas Sparks novel. The worst kind of sympathy addict will never admit that deep down, they feel a sense of superiority when they see someone in worse circumstances than themselves.

 

Brene Brown describes sympathy as an emotion that drives disconnection. Sympathy is like that bulky, itchy, ugly sweater that your great aunt knit you for Christmas one year. It’s awkward, uncomfortable, and ultimately more for the benefit of the giver than the gifted.

 

Sick people don’t want your sympathy. We aren’t “poor,” we aren’t “little” (especially not after all those steroids), and we aren’t “things.” We want someone to listen, not use us to feed an emotional need or simper at us like we’re some baby bird that fell out of its nest.

 

We could have been promoted at work, met the love of our life, or just enjoyed a really great cup of coffee. But we’ll never be more than that sad little sick girl in the eyes of the sympathy addict.

 

Awkward Arnolds

Favorite Phrase: “…”

The mute cousin of Negative Nancy, Awkward Arnolds are the most common type of person you meet when you’re sick. They’re the co-worker who won’t look at you in the meeting or the neighbor who scurries into her house with her groceries when she used to talk your ear off.

 

I didn’t fully understand why acquaintances and classmates suddenly grew so aloof after my diagnosis until a full five years into my illness, although I should have. Once after a high school classmate’s brother died in a motorcycle accident, I couldn’t meet his eye for a full week. Seeing something bad happen to someone you know can cause deep discomfort. Rather than wade through the discomfort, some people are paralyzed by it.

 

See a bit of Awkward Arnold in yourself? Try just saying hello, no matter how uncomfortable it feels. Remember that tragedy isn’t contagious. The words will come easier each time you speak them.

 

Mr. Fix-Its

Favorite phrase: “I know someone with your condition who took homeopathic drugs/smoked pot/did yoga/danced naked under a full moon, and they’re completely cured.”

For every problem you have, a Mr. Fix-It has at least five solutions. He’s usually so overcome with eagerness to share his wisdom he’ll interrupt you before you’ve even finished explaining the problem.

 

Despite the label, Mr. Fix-Its are not limited to just the male gender. You’ll find just as many of these helpful little fairies while applying lipstick in the ladies room or at your women’s group at church as you will out in the general public.

 

The True Friend

Favorite phrase: “How was your day?”

Disease is to your social life what a gardener is to a flower bed; it removes the weeds and leaves the flowers to grow and flourish.

 

You’ll know her when you see her. She’ll be the one sitting next to you in the ER, behind the wheel on the way to the doctor’s appointment, or the voice over the phone on one of the worst days. She can make you laugh and listen to you cry. When illness pushes others away, it pulls her closer.

 

When you’re chronically ill, you don’t know what the next year, month, day, or even hour might bring. But you know that your friend will be there for all of them.

 

Oatmeal for Dinner

I ate oatmeal for dinner yesterday. Sometimes I eat oatmeal when I’m hungry but don’t feel like cooking. Living alone and not having to prepare meals for anyone but yourself can result in some unusual eating habits. Yesterday, though, I had a fridge full of food- specifically beef and bell pepper stir fry over white rice. I’d cooked it the night before and then tucked it away in the corner of the refrigerator.

 

hungry violinist

Smart musicians don’t play concerts on an empty stomach.

 

I went with the oatmeal over the beef stir fry not by choice, but because lupus had decided to have a raging party in my stomach. That’s ok; if I had to rank all of my lupus symptoms, I’d list stomach issues as one of the least unsettling (pun intended). Throwing up occasionally won’t ruin my day, and as inconvenient as running to the bathroom is, it’s far less debilitating than fatigue, insomnia, or brain fog.

 

Dont-mind-me-Im-just-running-to-the-bathroom-for-the-15th-time-today (1)

On the bright side, at least I’m getting some exercise.

 

An hour and a half before I had to get up on stage with four of my colleagues and make Mozart’s G Minor Quintet after three rehearsals sound easy, I decided solid food wasn’t for me. Nowhere in my part had Mozart indicated that the violist should run offstage holding her stomach.

 

avant-garde-musical-symbols

That kind of theatrics is for contemporary composers.

 

My disease has disappointed me and crashed the party many times throughout my life- but oatmeal will never let me down.

 

Just as I had hoped, oatmeal for dinner quelled the riot in my gut. The Mozart flew by with no awkward breaks. As I walked off stage with the rest of the ensemble, I mentally patted myself on the back for finding the perfect panacea.

 

oatmeal

This program brought to you by Quaker Oats.

 

When I was first diagnosed eight years ago, I would have felt quite differently about eating oatmeal for dinner. Frightened by the disturbing symptoms that mysteriously come and go, I kept myself afloat by imagining a future in which the fatigue had disappeared into thin air and the nausea had faded to a memory. I wanted my life back. I wanted to be normal again.

 

Eight years later, my definition of normal has shifted, mutated, stretched to include whatever my life is now.

 

Will I ever be able to just go play a concert without some sort of minor emergency beforehand? Doubtful.

 

Will I ever get to stop putting up with this stupid disease and just live my life?

No.

 

Will I ever reach a point where I accept that I have limitations and find ways to work around them?

I’m getting better everyday.