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.

 

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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.

 

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.

A Day in the Life of a Sick Girl

I love a good teacher workshop. Want a full-size poster with six types of learning styles coordinated by the colors of the rainbow? You got it! Bow arm exercises for a five-year-old in Book 1? You’re in luck! Group class ideas for advanced violists? BAM! There it is!

When I’m feeling stuck professionally, a workshop leaves me energized, excited, and bubbling with new ideas. Plus, catching up with colleagues and swapping stories and advice cheers me up as much as the actual instruction.

Naturally, I’ve been looking forward to the Winter Workshop for Suzuki Method string teachers in my area. Clinicians from different cities fly in and run group classes, violin masterclasses, and professional development lectures for teachers at least once a year.

A month earlier, I had filled in the online application, skipping over the sign-up for volunteer positions. Since getting sick, I’ve learned the hard way that almost any commitment is an over-commitment. I never know how I’ll be feeling on any given day, so I try to avoid volunteering altogether. This way, I won’t have to back out at the last minute if I’m too sick to help.

lean out

These days, I practice the fine art of “leaning out.”

When I clicked submit, that annoying error message that pops up when you leave a field blank directed me back to the volunteer section.

Damn it. They’re onto me.

I scrolled past stacking chairs, cleaning up, and setting up, knowing that too much physical exertion is a one-way ticket to the land of Bed for Days.

Stuffing folders. Picking up clinicians from the airport. I’m hoping to feel well enough for one day so I can attend the workshop. Any extra day is pushing it.

Registration. That involves getting up in the morning, doesn’t it?

While I nearly always feel better as the day progresses, nausea, fatigue, and occasionally joint pain like to gather and hang out in my bedroom every morning. Few things short of a house fire can pry me out of bed before 10am.

I’d finally settled on helping tune students. I’ve been tuning instruments for the past twenty years, so this would be hard to screw up. Also, I’d be at the workshop anyway, so this required no extra time or physical effort beyond my ability.

Or so I thought…

A few days before the workshop, the coordinator emailed me to confirm that I would be available at 8am and 3:20pm to tune instruments.

I could explain to the coordinator that I’m sick and my 8am is the equivalent of a regular person’s 4am, but I hate it when people assume I’m asking for sympathy, or, even worse, that I’m intentionally trying to shirk responsibility.

My fingers tapped out a reply.

“Mornings are my nemesis.” No. That won’t do.

“I’m morally opposed to any hour of the day before 11am.” Too dramatic.

“Mornings are against my religion.” Not very believable. Also, difficult to prove.

I finally settled on a simple request to be reassigned to a task later in the day, sans explanation. Fortunately, the coordinator accommodated my request without questioning it.

The morning of the workshop, I woke up tired and achy after a night of disrupted sleep. I rolled out of bed, walked the dogs, swiped some makeup across my face, and rushed out the door to arrive at the workshop just in time for the lunch break. No sweat; I still had half the day to observe and learn.

To my surprise, I caught a glimpse of an acquaintance from Austin sitting across the lunchroom. He’s my age, but a rising star in our field, for good reason. If energy and creativity were magical, he’d rule his own enchanted forest full of rainbows and unicorns.

 

unicorn

“Meghan!” He exclaimed, giving me a hug when he saw me.

“It’s been what, three years? What’s new?”

Oh, you know. Relearning to walk. Getting over some brain inflammation. Leaving my husband and filing for divorce. Same old, same old.

“Not too much. You?” I asked.

“Lots going on!” he grinned. In the years since we’d seen each other, he’d successfully auditioned for the Austin Opera Orchestra, presented at at least one state teachers’ conference, and guest taught at a handful of summer institutes across the country- not to mention running his own institute. Truly, my friend is an amazing teacher and deserves all the success in the world.

Is that wedding ring on his left hand new? Did he get married last year?

“Do you have any students here?” he asked.

Ah, that deadline I missed. I remember that day! I spent it reading up on DIY divorce, printing out papers, and getting my ex to sign them in a public place (because I’d read that was safest). He couldn’t handle me being sick, so I imagined he won’t take to the whole divorce idea too well, either. Then I wandered downtown cluelessly asking random passersby where to file them until I finally was lucky enough to stumble into the correct line in the county courthouse. They’d confiscated my water bottle at the metal detectors at the entrance for being contraband, but at least they didn’t take my shoes…

“Ah, no. But maybe next year.”

“Well, I’m looking forward to teaching them next year, then!”

By now, the other teachers were packing up their lunches and squinting down at their itineraries. He slipped out the door in a crowd of instruments, tote bags, and teachers. I started to follow him when I nearly bumped into another teacher I knew.

“Hey! How’s it going?”

She smiled in response, then coughed.

Uh oh.

“How was Disneyland?” I asked. She and two other teachers had just returned from a tour in which their students had performed.

“Amazing! It truly is the most magical place on Earth,” she croaked.

What dosage of immunosuppressant am I on this month?

“Exhausting, though,” she continued.

I nodded, mentally filing ‘Take Students to Disneyland’ under Things I’m Probably Not Able to Handle.

“I’ve been sick since we got back. My doctor says it’s a retrovirus, which is an old virus that comes back when your immune system is down.”

Crap.

“Hey, can I borrow your schedule printout?” she asked suddenly.

 

biohazard

Red alert!! Red alert!!

 

“Sure!” I said brightly, handing it to her by the very tips of my fingers.

She flipped through it, pausing to give directions to a colleague who asked for help.

“Here you go.” She reached to hand it back.

“That’s ok!” I said, keeping my hands by my side and hopping back a little. “I don’t need it anymore.”

“Here..” she tried to hand it to me again.

She looked bewildered as I slipped awkwardly out the door.

Once back home, I opened my computer and noticed an email from some website called urbandictionary.com. They asked to use my picture for something called a “hot mess”- whatever that is. I guess I’ll get back to them when life is less crazy…

Ultimately, I enjoyed the teacher workshop and came home swimming in ideas, just as I had hoped. Any day that’s only minimally affected by lupus rather than fully hijacked can’t be a bad day.

Crisis of the Week

I woke up Saturday around noon feeling like I’d been hit by a truck. Most of us sickies know the feeling: sore muscles even if you didn’t work out, fatigue pushing you back into the mattress, dull pain slicing through the fogginess in your head.

 

Oh. It’s one of those days.

 

Luckily, Saturday is my day off, reserved for relaxing, taking the babies to the dog park, and cooking and cleaning I didn’t get to during the week. No swiping eyeshadow onto droopy eyes, stuffing my purse with cans of espresso, and dragging myself to work when I can barely walk straight.

 

During my first two years with lupus, every day brought some new symptom ranging from the merely annoying to the outright terrifying. I never knew if I would throw up my oatmeal or make it to school with something in my stomach. Would the brain fog and confusion result in me losing my keys five times in one hour or getting lost on the mile drive to school? Fatigue and nausea lingered like obnoxious houseguests for the first two years, returning to visit for days or weeks ever since. I remember waking up one morning with with arms so weak I couldn’t hold them over my head, then staring blankly at the coffee machine because I couldn’t lift a cup of water to fill it. I would stumble into class with hair that looked like a nest for small woodland creatures because I couldn’t lift my hairbrush.

 

As I adapted to having an illness and started to listen to my body, the number of crises dwindled to once or twice a week. I learned to increase or decrease my dose of steroids without having to call my doctor every five minutes. Light weight lifting with a trainer strengthened my arm muscles so that intermittent attacks of muscle weakness barely affected me. Allowing my body to rest, even if it meant I spent half the day sleeping, broke the fatigue’s hold over me.

 

But even with all the precautions, medication adjustments, and resting, crises still happen. Even during the best of times, I still wake up exhausted some days and don’t know why. I still feel dizzy or am sensitive to lights and sounds for no reason. Even when life seems sunny, fatigue still lingers like a shadow.

 

I spent years hoping for the day when living with lupus would no longer be a struggle. Several months ago, I was driving home from work on one of those perfect days when the sun shines but doesn’t burn and the spring breeze carries the faintest echo of winter chill. My thoughts danced from one subject to another, free of the cloud of exhaustion. After a period of severe illness when nothing seems to go right, you celebrate the days when you feel well, the sun warms your shoulders like a cozy sweater, and your hair has finally decided not to stick up like a haystack.

 

I wondered if tomorrow would be as idyllic as today- then suddenly realized I couldn’t possibly predict that. Like the weather, lupus conditions are temperamental and always changing.

 

Over time, I’ve learned not to be fazed by extreme weather conditions. As a kid growing up in Houston, I didn’t have a choice. Tornado warning? Sure, I’ll wait twenty minutes before walking the dog. 40 degrees today and in the high 80’s tomorrow? Like they say: If you don’t like the weather in Texas, wait around a day or two. And who can forget our biannual week off from school/mandatory evacuation courtesy of hurricane season?

 

What if I thought of my disease the way I think of the weather? There will always be floods, tornadoes, mosquitos, droughts, and heatwaves hot enough to fry an egg on the sidewalk. To expect cool breezes and sunshine every day isn’t realistic. The best I can do is take the good with the bad.

 

Appreciate the perfect Fall day while it’s here. Rest inside with a good book during the storms.

Things That Terrify Me Less Than Losing My Health Insurance

  1. An asteroid hurtling towards Earth. (At least we’re all in this together.)

 

  1. Roaches. Lots of roaches. (Gross, but not fatal.)

 

  1. Being stuck in a room in the Amityville Horror House for a week.

 

  1. Being struck by lightning. (Much, much less likely to happen.)

 

  1. Being vaporized by an atomic bomb. (Quick and painless compared to a long, drawn out battle with brain inflammation.)

 

  1. Zombies. (They’ll eat your brain, but at least they’ll do it quickly- unlike lupus, which devours your brain slowly over many months).

 

  1. Getting into a car accident. (It’s not the car insurance companies that are turning me away because of my preexisting condition.)

 

  1. A pack of rabid wolves. (You can’t climb a tree to get away from lupus).

 

  1. A swarm of eight million mosquitos. (One of my lupus medications doubles as an antimalarial.)

 

  1. Tax season when you’re self-employed.

 

Thoughts I Had While Shopping Recently

Junior…Plus…Women…Maternity. Where’s the I-Was-Once-Normal-But-Then-I-Took-Steroids section?

 

In the history of the world, has screaming at your child to “stop crying” ever actually resulted in stopping them from crying? Leave insights in the comments below, although I think I already know the answer to this one.

 

Is there a name for fear of accidentally buying a dress from the Juniors section when you’re in your thirties? Clingingtoyouthaphobia? I’m not alone in this, am I?

 

Ross and Marshall’s- genius layout! With accent chairs and footstools right next to the women’s section, I can sit down with a stack of dresses when I get fatigued. Everyone will think I’m just testing out the chair.

 

A Starbucks right in the middle of the store is the only thing that’s missing from DSW. Barnes and Noble knows what’s up.

 

This dress clings in all the wrong places. This one fits like a tent. THIS. ONE. IS. PERFECT! Finally! What label is it? Ivanka Tru…ugh…