What am I doing here?

I’m still trying to figure out what to do with this little corner of the internet. I anticipate that things are going to change pretty drastically on this blog over the rest of the summer, so BUCKLE YOUR SEATBELT, MOM.

I want to use this as a space to document my life — primarily through photos and video. I’m still trying to put my finger on what I want to write about here, if anything at all. I took a nice long break from publishing posts, which was needed. It’s so easy to get caught up in feeling like you need to be posting to be “popular” or to gain an “audience” or to build your “base” – but in the long run, none of the content that results from that mindset is appealing at all, and it’s totally transparent and boring to boot. Plus, when I caught myself thinking that way, I could never answer the bigger question of WHY I wanted those things — which is never a good sign.

So here’s what I’m thinking:

I’m learning to code, which you can read about over on Medium. I know it seems silly to be starting yet ANOTHER blog, but I do want to keep some separation between my personal content and more business-y, tech-y industry talk. I’m working now on how to best streamline and organize those two parts of my life. It’s turing out to be trickier than I thought.

For example, I totally regret starting up a second twitter account and will probably be deleting that one entirely in the near future. I think when it comes to a shortform, share-heavy medium like twitter, it’s better to be my authentic self in one place (quirks and all) than to be all personality on one handle and all business on the other. I don’t know, it’s almost like I want to represent myself honestly and accurately or something. Weird. 

When it comes to longform blog posts and work projects, though, I do think that a separation of content is necessary – which is why I initially set up corleymay.com/work a few years ago.

I don’t love how stagnant my portfolio site has become, but when I looked at it recently (after not having changed it at all since 2012), I found that it was really more of an embarrassing time capsule of who I used to be than a useful or accurate look at the savvy professional I am today (winky-face emoji fully implied here) — so I purged it and started over, creating the sad and anemic blog you’ll see if you visit that link today.

I’m hoping my new coding skillz can help me build a dynamic home base for all of my professional content – I want to update that site regularly, not once every couple of years when I get embarrassed of how out of date it is. My goal is to provide a clear and concise look at what I am learning and working on – which is why I do want to sift the baby photos and personal posts to this blog.

My Body

Hi, blog reader! May is Lupus Awareness Month. And I have lupus. So on Mondays in the month of May, I’m going to be posting about Lupus. To raise awareness. Because it’s Lupus Awareness Month. Here we go. 

It’s the last Monday of May, and so it’s my last post on Lupus Awareness for the year. If you’ve read these posts, thank you. It makes me happy knowing that you might now have a better understanding for the people who live with this mysterious disease. I can’t do much, but I can share my story with you guys. So thank you for reading along and helping me do what I can.

This month, I’ve told you about how lupus makes me kind of like a werewolf (#werewolflife). I’ve given tips on Caring for Your Friend With Lupus (YFWL). And I’ve tried to give you an idea of what it’s like for me (It’s Different for Everyone).

To wrap things up, I want to make one point very clear: My body is sick, and even so, it’s amazing.

heart-balloons

I am not skinny or toned or athletic. My biceps don’t ripple and my stomach is not flat. My skin is a little splotchy, my cheeks are always red, I bruise far too easily and I have a lot of freckles. And I am so, so proud of my body.

My body was able to create another human from scratch, to push that tiny human into this world, to feed and grow that tiny human into a fat, happy baby. My body can tell when his body is too hot or too cold, and my body will automatically adjust to fix his temperature. My body makes the antibodies he needs to keep from getting sick.

My body fends off millions of germs and diseases every single day. My body has never had a broken bone. My body is so much stronger than you would think.

Yes, my body asks a lot in return. I have to get more sleep than the average person. My SPF is probably higher than yours in the summer. I take a lot of breaks, and I take a lot of medicine.

But on days when my brain may want to throw in the towel and sleep for weeks, my body finds a way to get up, get moving, get things done. I am a good mom and a hard worker, and my body does not hold me back; it holds me up.

I didn’t write these posts to get you to feel sorry for me or go easy on me or expect less of me. There are a lot of us out here, each of us dealing with lupus in our own way.  I wrote these posts because it is my hope that lupus will eventually be understood as more than a punchline on House. If I can answer your questions or otherwise increase your understanding, please get in touch. 

My Favorite Things

Facebook

So yesterday I posted the link to this house on my Facebook page and said “Yes!” when Josh asked if I was serious. He took that to mean I was serious – I know, right? - which then lead to us having a conversation about whether I could possibly be serious, which then lead to me saying that when I said I was serious, I didn’t mean I was SERIOUS serious. Just, like, nebulously future planning serious.

(The moral of this story is that I am full of half baked wild ideas, impulsive, and overall super-easy to be married to.)

What it boils down to is that I would SERIOUSLY love to someday buy a historical house in my hometown and restore it to beautiful, shining, small town, Main Street glory – but probably not this year, or next year, or even the next year. I mean, we just bought a brand new house and I haven’t managed to hang a single picture on the wall; what makes me think I could strip centuries-old wallpaper, renovate a kitchen, or completely redesign an old, very much in need of some TLC house?

So, I have a summer project – make our house a home. Last night, I created Pinterest boards for every room of our beautiful house. There will be painting. There will be garage sale shopping. There will be furniture buying and more trips to IKEA than I want to think about right now. But before I can fulfill my own future Young House Love dream scenario, I have to start with the not-so-baby step of making our current house our own.

I think I’m probably a pretty exhausting person to be around.

How about some favorite things? 

Retronaut is an online archive of photos from the past. It is also my new favorite website. If you’re looking for a good starting point, try this collection of Couples during the Great War. I’m not sure why, but I love looking through old photographs of strangers. Photo albums are always my favorite items in antique malls – they are usually such a poignant mix of romantic and creepy, which is probably a good description of my tastes overall.

I got wildly excited over a podcast during my commute earlier this week. In Radiolab’s recent episode titled “The Skull,” the hosts wove together a fascinating history of the truth and lies behind the so called “missing link.” A key player in the story was the Taung Child skull, which was discovered in an ancient cave in South Africa and which totally threw the science community for a loop. All of that is interesting and fascinating, and you should absolutely listen to the podcast to hear the full story. But what really thrilled me was the fact that to coordinate with the making of this episode, Radiolab teamed up with Makerbot and the Field Museum to create a downloadable schematic of the Taung Child Skull, so that anyone with a 3D printer could download, print, hold, and study the skull as they listened to the story of how it eventually became a big key in solving the mystery of where we came from and what we used to be like.

WE LIVE IN THE FUTURE AND THE FUTURE IS AMAZING.

One last thing for this week: Selfies are getting a lot of hate from a lot of directions lately, and while I can understand the sentiment (we’re navel-gazing, we’re self-obsessed, we’re vain (HAVEN’T WE ALWAYS BEEN?)), I was really interested to hear this episode of Studio 360 about Cindy Sherman’s Untitled Film Stills. Sure, some selfies are dumb and they are certainly not all art. But self portraits are not a new thing, and some really amazing work can come from turning the camera (or pencil, or brush) on yourself with the goal of telling a story.

Whew. There’s a lot to be excited about this week. I’m a little out of breath.

They’re playing my song(s)

Two videos for you today. The first is Chris Parnell and Maya Rudolph singing a lullaby Chris wrote for his newborn son. I love this because it’s a perfect expression of the all-consuming and completely ridiculous affection I feel for everything Henry does, whether it’s giggling at my funny faces or leaving a disgusting, sticky trail of smushed up banana in his wake.

“And as I lean above you,
with my pinky in your hand

singing words you couldn’t possibly begin to understand,
The two things I’ll be thinking are that I’m exhausted and
I love you, I love you.” 


And then we have another perfect conglomeration of things Corley loves: clean cut boys singing an a capella rendition of songs from Disney’s NEWSIES (the musical). It’s like my life is the Truman show and they made this video just for me.

I hope you’re getting through the week ok, friends. Henry and I both have a cold and the end of the school year is crazy for Josh, but the sun is shining and Friday is getting closer, so I think we’re going to make it.

The Ocean at the End of the Lane

I made it a point to carve out time for reading last week, and I am so glad I did.

the-ocean-at-the-end-of-the-lane-cover
“All monsters are scared. That’s why they’re monsters.”

The Ocean at the End of the Lane* felt familiar to read. It had the same kind of twisted fairytale feeling as Hayao Miyazaki’s Spirited Away*, with a little bit of the old world mysticism found in Ron Rash’s Serena* and the creepy something-not-quite-right dissonance of Flannery O’Connor’s Good Country People.

So what I’m saying is, this book was delightful and captivating and I loved reading it.

The narrator is a middle aged man recalling his own strange and eventful childhood.  Since having Henry, I have avoided books where children are in grave danger (I know, what a wimp), and I probably would have worried about this narrator too much to actually enjoy his story if it weren’t for the comforting and capable hands of the Hempstock women – Lettie, her mother, and her grandmother, who live at the end of the lane.

I don’t want to even begin to summarize this one for you, because Gaiman weaves the story together so artfully. Check out the Goodreads synopsis if you can’t bear to go in blind, but trust me when I tell you to stick with this one through the end. The Ocean at the End of the Lane reminded me of scary stories and fireflies from the front yard summer nights of my own childhood, in all the best ways.

Next up is Bellweather Rhapsody*. I downloaded a sample tonight and told Josh that the prologue is a cross between The Grand Budapest Hotel and The Shining, which I think is a very good cross indeed.

#werewolflife

Hi, blog reader! May is Lupus Awareness Month. And I have lupus. So on Mondays in the month of May, I’m going to be posting about Lupus. To raise awareness. Because it’s Lupus Awareness Month. Here we go. 

If you Google “lupus definition,” you’ll find that the origin is listed as “from Latin, literally, wolf.”

werewolf
According to this random internet research paper I found, they called it lupus “because of the destructive injuries that can bring to mind the bites of this animal.”  But I could see another reason for naming lupus after the wolf…

Don’t freak out, but my lupus has given me a lot in common with werewolves.

It’s hard to explain.
Professor Lupin is a werewolf near and dear to my heart, so I’m going to reference him a lot in this post. Remember how misunderstood he was? I mean, once the parents at Hogwarts found out what he was, he got fired, despite the fact that he was totally safe most of the time and had his condition under control! Lupus is hard to explain to others – that’s part of the reason why Lupus Awareness Month is so important. Maybe if Professor Lupin had distributed some kind of Werewolf Awareness literature, he would have had an easier time. I know Hermione would have made a few buttons for the cause.

You’ve got to have friends.
Lupin again. Every time he changed, Sirius would take on the form of a big black dog so that he could stick with Lupin and keep him from getting into too much trouble. When you have lupus, you have to let yourself count on your friends and family to help you, even when you would rather lock yourself in your room and deal with it on your own.

You can’t fight your body.
No matter what the movie (not counting Twilight), the transformation process from human to werewolf is horrifying.

(Examples: An American Werewolf in London | Being Human | The Vampire Diaries)

We watch as the character’s bones stretch and break, causing him to arch his back and grit his teeth and howl with pain until the transformation is complete. TV and movie werewolves are always trying to avoid transformation, but one thing is constant – they can’t fight the moon just like I can’t fight a flare. Sure, we learn to cope – but part of lupus is learning to give in and let your body take its course. There are things I can do to soften the blow of a flare – like getting plenty of rest and fluid – but at the end of the day, I have to accept the fact that there will be times when my body is out of my control.

You get HANGRY.
Picture a werewolf in the middle of a feeding frenzy and you have a sense of my hanger on day two of a hefty prednisone taper. Prednisode is a steroid, and it’s usually my first line of defense against a flare – and it makes me HULK. OUT. I don’t mean I eat everything in the manic pixie dreamgirl give me all of the cheeseburgers and cupcakes way – I mean I am hungry like the wolf. The werewolf.

You learn to deal.
All movie werewolves have their coping mechanisms, and so do I. Lupus is something we live with. We take our meds, we drink our water, we avoid direct sunlight…and the full moon. Awoooooo!

 

My Favorite Things

I’m impressed by the most random details.

For example: I’m walking in to the office. I see that a coworker has dry-cleaning bags hanging in her car and think to myself, Wow. She’s such an adult.

Then I go sit at my desk and finish the mini Cookie Dough Blizzard I bought on my lunch break, because I am decidedly NOT such an adult.

smiling high chair baby Henry

Henry is now drinking out of a straw, eating foods that require chewing, and wearing superhero pajamas. The other day, he stood next to me and hung on to my shoulder as we shared a banana. Every time he took a bite, he crinkled up his face and said “Mmmmmm!” and I thought my heart might explode from happiness.

But enough mushy stuff. Who’s in the mood for some of my favorite things?

Speaking of how I’m not an adult, I can’t get enough of this 1990′s video of the Teenage Mutant Ninja Turtles kicking off their live tour on the Oprah Winfrey show.

I’m constantly seeking out new sources of inspiration, so I loved this post of 15 photographers to follow on Instagram from Design Sponge.

My friend Kelsey is a guidance counselor at an NC school, and she brought me to tears with this amazing kid’s sweet story (and the follow-up).

Speaking of tears, I’m on my second straight week of office dancing / happy weeping / both at the same time to this music video from Sara Bareilles. Mom and I got tickets to see her in Charlotte this July and I am counting down the days. Hopefully I’ll redeem myself by not passing out mid-show this time. Why yes. Yes I did pass out mid-show last time. Yes I was carried out of the Orange Peel by a bouncer looking like a pale, dehydrated mess. Yes Josh did think I was drunk until he arrived at the venue to find me in the middle of an embarrassing medical emergency. However did you guess? 

And speaking of videos, have I told you about the Ninja Turtles video from the 1990′s? Yes?

Ok then, I guess we’re done here.

 

On giving a speech when you’re scared to death

This view always makes my stomach hurt a little.

This view always makes my stomach hurt a little.

Real talk: one of my biggest fears is public speaking.

A lot of people are surprised to learn this about me, and I don’t blame them. After all, I minored in theater in college. During my academic career, I spent almost as much time on a stage as I did in a desk. Put me in a pair of character shoes and give me a narrative ballad and I will shine bright like a diamond. But ask me to stand in front of a bunch of adults and just speak, as myself, no character or script? Chances are you’ll find me backstage before my speech taking deep breaths and wiping the fog off my glasses as I try not to vomit.

You read that right. My glasses fog up when I get nervous. I am that person. 

I’m telling you this because I had to give a brief presentation yesterday. In public. As myself. And because I took time beforehand to prepare and build up my confidence, it actually went super well. So here, you go, straight from the blogger’s mouth, the steps you should take to make sure your next public speaking experience ends in applause and not upchuck:

1. Lay the groundwork and make your presentation work for you.
Your audience is here to listen to you, not to read your Powerpoint – so if you’re using a visual presentation, don’t shove too many words on your slide. Instead, use the words on your slides as a jumping off point. Build your presentation so that the order of your points makes sense for you, and use your slides as landmarks to move you along.

2. Put on your armor.
Take extra time getting ready to do the things that make you feel confident and put together. For example, I took the time this morning to iron my favorite work dress,  put curlers in my hair and put on “real” makeup (instead of my usual coat of mascara and swipe of lip gloss). This is my version of putting on a costume for a play. Because I picked out my dress last night and took an extra half hour getting ready this morning, I was able to tackle my presentation feeling like a polished young professional.

3. Play out the worst case scenario.
Ask yourself, what’s the worst that could happen here? For example, this morning, I was presenting to a group of friendly adults.

What will they do if I stumble over my words?
They’ll probably wait patiently while I start my sentence over.

What if they ask me a question and I don’t know the answer?
I’ll just say “I don’t know, but I’ll find out for you.”

What if they boo me?
Unless I insult their outfits and their families, they aren’t going to boo me. That is a ridiculous thought and a baseless fear. Move on.

What if I pass out? (Yes, I did actually think this)
You’re on a school campus. They’ll call the school nurse. It will be embarrassing, but everyone will be worried about you, not mad at you. You won’t be mocked for having a medical emergency. But you’re not going to pass out.

4. Remind yourself that you’re among friends.
Unless you’re a politician or a glutton for punishment, chances are you’re not standing in front of a crowd of your enemies. In my case, I was delivering good news to a friendly group of people. Once I reminded myself of those facts, my fear levels went way down.

and 5. Get into character.
Real World Corley is afraid of crowds and public speaking. So what do I do when I have to speak, in public, to a crowd? I get into character as Outgoing Corley. Outgoing Corley LOVES crowds. She CRAVES attention. She feeds off her audience’s excitement and will even do an Oprah impression if the mood is right (Yes, I did). And once I was done with my show, I hightailed it out of there before I had to actually mingle and reveal myself for the painfully shy introvert that I am.

 

Caring for Your Friend With Lupus (YFWL)

Hi, blog reader! May is Lupus Awareness Month. And I have lupus. So on Mondays (or, uh, Wednesdays) in the month of May, I’m going to be posting about Lupus. To raise awareness. Because it’s Lupus Awareness Month. Here we go. 

YFWL would probably love a wholesome beach picnic. Or not. Totally her call.

YFWL would probably love a wholesome beach picnic. Or not. Totally her call.

Inspired by this Atlantic post about Caring for Your Introvert, I thought it might be helpful to put together a similar guide to caring for your friend with lupus.

First of all, forgive YFWL if she says she’s going to post about lupus on Mondays in the month of the day and then her second post comes two days late. She’s tired, okay? She’s always tired.

One of the biggest kindnesses you can grant to YFWL is to let her bail every now and then. She won’t abuse the privilege all the time, and she won’t turn into a chronic flaker-outer — but every once in a while, she will need to cancel dinner or drinks, no questions asked.  I am so lucky that my friends and family will take me at my word when I “play the lupus card” or say I’m too tired to go shopping/for drinks/to the park/etc. There is a common mindset that having fun is the remedy to feeling down or tired (“You’ll feel so much better if you come out with us!”) – and while this may often be true for the average healthy person, the opposite usually applies to YFWL. Too much fun and I’m on a one-way trip to Flareville, a terrible place full of heating pads and daytime TV and chicken noodle soup.

Related to that, you’ll be doing YFWL a huge favor if you keep in mind that her typical bedtime may be earlier than yours. If she does come out to a party or the bar, don’t tease her when she says she needs to head home at what you may think is too early an hour. Just give her a hug, tell her you’ll see her later, and don’t make her feel like a total buzzkill who drinks weak sauce instead of party juice. Better yet, make plans with her scheduling needs in mind!

I have learned that there are some activities that just aren’t for me – for example, I can’t go to a concert where I can’t sit down. Even if I love the band, even if we can stand in the shade and the weather will be great, even if all my friends will be there. It’s a hard no. I can’t hang if I can’t sit. I’m totally comfortable just saying no when I get invites to events I can’t deal with, and my amazing friends and family never give me any pushback.

And just like I know what I can’t do, I know what I CAN do! With sunscreen and a source of shade, I can spend all day at the beach. As long as I stay hydrated and take a break every once in a while, I can ride every roller coaster in the theme park. And if we bring a blanket and some granola bars, I can enjoy a music festival from the comfort of my butt on the grass. Just like you need to trust YFWL when she says no, you should trust her when she says yes! I’ve got a mom, and I’ve got a doctor – and if they’re both ok with me having a day of fun in the sun, you should be, too! Whether she’s joining in on plans or sitting on the sideline, it’s your job to trust YFWL to know her limits.

It’s different for everyone

Hi, blog reader! May is Lupus Awareness Month. And I have lupus. So on Mondays in the month of May, I’m going to be posting about Lupus. To raise awareness. Because it’s Lupus Awareness Month. Here we go. 

Let’s say you’ve been sick. You get back to work, and one of your coworkers says “We missed you this week! What was the matter?”

In a typical situation, you can say “I had a cold,” or “I had the flu,” and your colleague will know what you mean without your having to go into much detail. You say you had a cold, she knows you had a runny nose and maybe a sore throat. You say you had the flu, she knows you were running a fever, feeling achey, coughing and sneezing. She can commiserate. She’s been there before. She understands.

But what if you say “I was having a lupus flare?”

Chances are, she won’t picture THIS

It gets tricky with lupus. Take a look at this list of signs and symptoms (or this one). The truth is that someone with lupus can, at any time, be dealing with all of these, none of these, or a whole mess of symptoms including these and a bunch of others.

I can’t tell you about what lupus is like for everyone. I can tell you what it’s like for me. So here’s what I mean when I say I’m having a flare.

I’m exhausted. Tired doesn’t begin to describe it. No amount of sleep will fill my cup when I’m having a flare, so I just do my best to aim for 8 hours and keep coffee always nearby. I don’t have strength to do much – it wipes me out to go up the stairs. I can’t hold my arms up for long enough to blow dry or style my hair. On flare days, I basically just flop around expending as little energy as possible (much like Paul Rudd here), counting the hours until I can flop into bed and wait to do it all again in the morning. (Read more about fatigue in this post)

My joints are swollen. I can typically tell a flare is coming when my right wrist locks up. I can’t bend it backward, I can’t lean on it, and I really only feel relief when I apply constant pressure with an Ace bandage. Once I’m in the thick of the flare, you can look at my hands and tell something is wrong – my finger joints puff up and turn bright red. Honestly, my hands look like they hurt. And they do. By the end of my flare, I’ll have swollen joints in my fingers, hands, wrists, hips, and ankles. I’m moving like a cross between a very pregnant lady and a very old lady. It’s not a good look. (Read more about joint pain in this post)

My face hurts. My cheeks are always a little rosy. When I’m flaring, that rosiness turns bright red and spreads through my cheeks, across my nose, and up over my eyebrows. The red rash is slightly raised and feels a like a bad sunburn – during a flare, it’s not unusual to find me laid up on the couch with a refrigerated gel eye mask* spread across my face (pictured so flatteringly at the top of this post).

I’m a grouch. My grab-bag of symptoms can dampen even the most buoyant spirit. I try to remember that snapping and brooding never made anyone feel better faster, but a flare can definitely wear you down.

And what causes a flare?

Well, it could be anything. Like all bad health-related things, the number one trigger is stress. Other triggers include sun exposure, too much alcohol, certain foods, too much physical activity, and drastic swings in the weather (I bolded the ones that seem to trigger most of my flares).

So – that’s what I’m saying when I say I’m having a flare. Like I said (and will keep saying), it’s different for all of us.

Lucky for me, my lupus is pretty well managed with the guidance of my doctors and the help of my family. I’ll talk more about how I manage my lupus in a coming post.

This is a great month to do a little googling and find other bloggers who are telling their lupus stories. My current favorite is Luck Fupus - her sense of humor is delightful and her honesty is refreshing and eye-opening.

If you have any questions about Lupus, I’m always happy to answer, whether it’s Lupus Awareness Month or any other month of the year. Fire away!