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!

My Favorite Things

New favorite blog alert: Stir & Scribble is full of beautiful photography and delicious food. I mean, GRIT TOTS, people. I added her to my feedly today and I don’t think I’ll ever look back.

I love how much these Marines love Frozen. They cheer when she takes her hair down because they think she’s hot – which weirded me out for a second, until I thought about my own crush on Prince Eric…and then I forgot about the Marines completely, because I was thinking about Prince Eric. Oh, Prince Eric. What would I give to live where you are?

Sorry. What was I saying?

My internet friend Brooke posted today about why she refused to put on a shirt for Shape, further proving that she’s totally awesome and we should all pay attention to the things she says, because she’s RIGHT.

Oana Befort posted a GORGEOUS desktop wallpaper for the month of May, and I recommend you download it now. Or, if pep talks are more your thing, check out the latest batch from Design Love Fest. And if you’d prefer a llama who is both impressed and hip with the lingo, well then, I’ve got you covered.

I accidentally ordered this shirt from Hello Merch a couple of sizes too big – but when it came in the mail yesterday, I immediately realized my “mistake” was actually my subconscious doing me a favor, because it’s the softest and slouchiest shirt I have ever had the delightful pleasure of sleeping in.

Welcome to my pajama drawer, accidentally too big new favorite shirt. I’ll see you soon.

 

Awareness

Little-Red-Riding-Hood-2

May is Lupus Awareness Month. Did you know that? Were you…aware? (I know. You can laugh. Or groan. I’ll wait.)

If you’ve been reading my blog for any significant amount of time, you probably know I have lupus. But it’s interesting- I spend 100% of my time living life with this condition, and I’m 100% uncomfortable talking about it.

For example: I mentioned a couple of weeks ago in my #henry365 photo that we had to spend some time at the doctor’s office. What really happened was bigger than that:  I was in the ER for chest pain and shortness of breath. It was my first time ever in the ER. They hooked me up to an EKG, they did a lung ultrasound, they gave me a chest x-ray, they put me through the CT Scan. They checked for everything from heart attack to pneumonia to a blood clot in my lungs – because when you have lupus and your chest hurts, it could honestly be any of those things. Or, in my case, none of those things. My rheumatologist thinks it was pleurisy – which sometimes just happens. And that’s that.

My trip to the ER is the kind of thing I’m talking about when I say I’m guarded about sharing the cloudier side of my life on this blog. But not this month. Because this month is Lupus Awareness Month and there is still very little awareness out there about lupus. Because the first thing you probably think of when you hear the word “lupus” is Dr. House saying “It’s not lupus.”  Because it may not seem like awareness does much of anything to help – but in the case of lupus, it does.

Even on the bad days, even when I can’t walk and my joints are on fire and I barely have the energy to brush my hair or hold my baby…even then, I don’t look sick. That invisibility can make lupus hard for others to understand. With a condition as mysterious and invisible as lupus, awareness means there’s a chance the person I’m talking to might actually know what I’m talking about and believe what I’m saying about my disease.

So this month, I’m going to do what I can to help. Mondays in the month of May will be my lupus days. I’ll be sharing with you what it’s like for me – because despite what the good Dr. House may say, sometimes it is lupus.

My Favorite Things

You probably had no idea how badly your soul needed to watch that video, did you? But Rowlf serenading that sleepy puppy just filled up a part of yourself that you didn’t even know was missing, didn’t he? I understand. I’m with you. You’re among friends here. Welcome to My Favorite Things.

I love everything in iviebaby’s etsy shop – but I REALLY love this beautiful triangle blanket. It’s too bad the sensible buzzkill who lives in my head keeps interrupting my daydreams about this blanket with reminders of spitup and leftover banana chunks and goopy, half-dissolved puffs – you know, all the stuff that makes up the trail that babies always seem to leave in their wake.  Still. What a blanket, am I right?

The Flora & Fauna prints from Chipmunk Cheeks are equal parts adorable and stunning – my favorite is this sweet little fox. I’m a terrible homeowner and haven’t bought a lick of art for my walls – but I can definitely picture these prints decorating the art-adorned walls of future Corley’s house.

Buffer is one of my favorite apps out there right now, and not just because it makes managing Twitter ridiculously easy. I love the whole culture of their company – and posts like this are a perfect example of why. Their transparency means that we get sneak peeks into how their team works and communicates – and how cool is it that they are so positive and helpful with each other? Four for you, Buffer. You go, Buffer.

In other cool app news, here are a few more I found:

  • Reporter is perfect for the data-obsessed (like me). It’s a super simple app that checks in with you throughout the day, asking you questions about where you are, what you’re doing, who you’re with. You’re only reporting to yourself, for yourself. (Here’s an article with more information on how it works.) If you are suffering an Identity Crisis and wondering how you can make better use of your time for the benefit of your psyche…well, then come sit by me. And download this app.
  • Focus is a pretty and useful Mac App built around the Pomodoro technique for time management. Perfect if you ever suffer what Douglas Adams called “Farnham” – the feeling you get about four o’clock in the afternoon when you haven’t got enough done.
  • Once I deleted Candy Crush from my phone, I found that there were still times when I wanted to play a game on my phone – nothing epic, just a quick fix for when I have five minutes to spare. Enter Kami, a totally gorgeous and challenging paper puzzle app. Maybe I’m totally telling myself what I want to hear, but I feel like Kami requires more thought than those other contagious swapping games – and therefore, I am obviously a superior person for choosing to play it. ;)

Alright. I feel like I’ve burdened you with enough reading, watching, clicking and tapping for this week. I hope your weekend is sunny and awesome! And if you’ve got any favorite things to share with me, add a link in the comments and I’ll be sure to check them out.

That old bed-wetting feeling

This is a post about two things: wetting the bed, and waking my mom up in the middle of the night to ask for help.

This is not the real Smoky, but it is a very close approximation.

This is not the real Smoky, but it is a very close approximation.

I have a very clear memory from my childhood – I woke up in the middle of the night. Our family cat, Smoky, was sitting beside me on the bed, staring at me. And two things were immediately clear to me:

One, I was soaking wet.

And Two, I was way past bed-wetting age.

I can still remember the flurry of thoughts that went through my head as I tried to reason through my situation in that frantic way you do when you wake up in a puddle in the middle of the night.

  • First, I tried to find the source of the dampness. Did I seriously pee? Did Smoky come in here to pee on me? (Smoky was a weird cat anyway, so this was not entirely outside the realm of possibility.)
  • Second, I tried to determine what kind of liquid we were dealing with – which meant I sniffed my covers like a madwoman for a minute or two.
  • Third, finding that nothing about my blankets smelled especially offensive, I tried to convince myself that it was just sweat or a nightmare -
  • And then Fourth,  I rolled over and eventually went back to sleep.

You know what I never did? Go wake up my mom and ask for help sussing out the situation.

Now, as an adult with the advantage of hindsight and a little more knowledge under my belt, I think what probably happened was this:

I ran a fever (as I often do when I sleep). The fever broke and made me sweat like a crazy woman (which does sometimes happen). Smoky, being the weird cat that he was, sensed my distress with his weird feline telepathy and came to sit on my bed in case the opportunity arose for him to suck my soul out through my mouth (you know, as cats do).

OR maybe I really did wet the bed and sleep in my own pee all night.

OR maybe I was hallucinating.

OR maybe none of this happened at all and I’m recounting a completely false memory created in my own sleep-deprived mind.

Anyway -

I was reminded of this whole episode last night when I found myself, once again, awake in the wee small hours with a wide-eyed creature perched next to me on the bed. Only this time, there were three key differences in my story:

  • One, there was no puddle.
  • Two, the creature was Henry.
  • And Three, I asked my Mom for help this time.

Mom is staying with us for the week, and while she is always amazing and helpful (seriously – it’s like she’s a magical laundry-doing, house-cleaning, baby-watching fairy godmother), I don’t think I have ever appreciated her more than when I knocked on her door at 4:00 this morning with a wide-awake baby on my hip. She threw back her covers, happily grabbed Henry, looked me in my bleary eyes, and told me to go back to bed.

So I did. And when the alarm went off two hours later, she came into my room all bright eyed and bushy tailed and full of joy over the sweet snuggles she got from her grandbaby while I was sleeping. She told me she was happy to help, and I didn’t doubt it for a second.

Here is what I know now, and what I wish I knew way back when I woke up in the middle of a bedwetting whodunnit:

If you can ask for help, do it. You don’t get a prize for figuring any of this out on your own. And chances are, there is someone in your life who will honestly be happy to help – whether the situation involves an otherwise cute baby who just doesn’t feel like sleeping, a bed full of what very well could be pee, neither, or both (if you’re lucky).

Identity Crisis

I’m overthinking all of this.

A little over a month ago, I wrote a big long brain dump of a post about how I wanted to change things up and start writing honestly and for myself again. If I were to draw up a “vision board” for this blog, it would be full of cute outfits and beautiful photos and pithy stories and Pinterest-worthy projects. My dream blog is full of flowers and interesting outings. On my dream blog, there is a link to my very own book in the sidebar.

So what is stopping me from building that blog?

Well, me. Obviously.

  • I’m scared of outfit posts because I think I’ll look dumb and frumpy.
  • I’m not posting beautiful photos because I don’t take the time to take beautiful photos.
  • I’m not taking the time to sit down and write or get crafty and creative because, let me be honest, I work full time and I’ve got a baby at home. Mama is busy – and lately, when given the choice between an early bedtime or an hour of writing, I choose my (sweet, sweet) bed.
  • I’m not giving honest snapshots of my life because life is not always sunshine and roses, and I don’t want to come off as whiney or incapable.
  • I’m worried that if I provide a true look at what I’m really like, you guys won’t like me. I know. Total weaksauce. Knock that business off right now, self.

In short, I’m editorializing all of ME out of my blog – I need to get out of my own head.

This post from Brooke: Not on a Diet really resonated with me – and showed me that I’m not the only one who feels this way. I keep feeling like I need to give my blog a “category,” but that I don’t fit into one. Brooke’s perspective reminded me that there is always another option – if I can’t find my category in the menu of choices, then it’s time to create my own category!

The stars further aligned this weekend when my feedly served up Nancy Ray’s post on organizing her home life - it was a great reminder that none of this happens without effort. It takes hard work and deep thought to create the life you want, either at home or on your blog.

The final straw for my kick in the pants was this Dress Your Tech post from designlovefest. I loved the “Make Today Count” wallpaper (pictured below) – it was just the visual that I needed to remind myself that I am in control of all of my hours every day – and I could definitely be doing more to make those hours count.

DLF_DressYourTech

click image to download wallpaper from DesignLoveFest

I know that I respond well when I set goals and hold myself accountable (if I can just make the initial effort to set goals and hold myself to them) – so here’s what I want for this week (both on and off the blog):

  • Plan and publish an outfit post
  • Research and choose a camera to replace my Canon T1i
  • Get back to reading 30 minutes a day
  • Work on my Treehouse iOS track 30 minutes a day
  • Log “Activity Points” on Weight Watchers at least 3 days

I like that this blog is an always-evolving work in progress. I hope you don’t mind all these “process” posts as I figure out what I want from my own little corner of the internet.

The Color Run

Mom and I have done a few 5k races together in the past. so when she told me that she was planning to do The Color Run with some of her Virginia work friends, I knew I wanted in! The race was last weekend in Roanoke, VA – and here’s how it went for us:

Originally, the plan was to have Josh, Dad, and Henry make the trip to Roanoke with us and wait for us at the finish line. But the drive from my parents’ house to Roanoke is about an hour, and it didn’t seem fair to ask them to do all that riding just to wait around for us to finish and then turn around and ride back home. I wanted Henry to come with us, though, since I’m still breastfeeding – and surprisingly, I didn’t respond positively to the idea of pumping in the car. So on the Friday before the race, I did some googling for a plan that would allow me to bring Henry to the race without subjecting him and his baby lungs to the clouds of colored cornstarch that billow up all over the race.

I finally found this blog post from a mom who used a stroller with a rain cover to keep her little one happy and safe during the run. We stopped on the way out of town and picked up a cover similar to this one* - and it worked perfectly. I don’t think you can possibly expect to escape the Color Run without getting at least a little messy, but the cover kept Henry from the brunt of the powder and shielded him from the clouds of color, which were really my main concern.

Here we are before the start: see how handy that cover is?

before2

And here we are after: Henry has a rockin’ blue goatee, but other than that, he was pretty much unscathed.

After

As for the run itself: I had a blast and will probably do it again next year! But if you’re considering doing the run for the first time, there are some things you should probably know:

1. It’s crowded. I’m not sure how many waves they offered – I know we saw at least three groups start the race while we were standing in the registration line. I’m terrible when it comes to estimating the number of people in a crowd – but I want to say there were at least a gazillion color runners in attendance on Saturday. There was a steady crush of people in sight ahead of us and behind us at all points in the race – I could never see the end or the beginning of the crowd.

2. It’s slowYou’re not going to beat your personal best time at The Color Run. Honestly, you probably won’t even be able to run at The Color Run, unless you’re one of the very first people in the very first wave. Aside from the occasional jog to pass by a group of slower walkers in front of us, we didn’t run at all. We were able to keep a pretty good pace while walking, and it didn’t bother us in the slightest – but if you’re going to get frustrated by the tight quarters and inhibited pace, this probably isn’t the race for you.

3. If you want to get really messy, you should try and be up front. By the time our wave was passing the color stations, they were running out of powder. We still got colored, but we didn’t look nearly as cool as the racers from the earlier groups. Some of the people in our wave resorted to rolling around on the ground to try and soak up as much colored powder as the could.  As you can tell by our tutus and knee socks, we are way too dignified for that kind of tomfoolery.

4. The color lingers. My palms were bright blue for the rest of the day. My armpits are still slightly cerulean-tinged. And the rumored “Unicorn Boogers” you might have heard about from other Color Runners? Totally a thing.

Overall, we really enjoyed our Color Run experience. I can see it becoming a really fun family tradition.

 

Friday

Friday

Here we are again, soaking in the glory that is Friday. Here’s how my week is going:

I mentioned that I improved my commute by replacing talk radio with podcasts. Since I’m now all caught up on This American Life and Grantland Pop Culture, I downloaded the How Stuff Works app to listen to two of my favorite regular shows: Stuff You Should Know and Stuff You Missed In History Class. Just this week I have learned about Landslides, Black Boxes, Lethal Injection, Jane Austen, and the Disappearance of Judge Crater. If you’re looking for a new podcast to add to your rotation, I definitely recommend this app.

I finished Z: A Novel of Zelda Fitzgerald*. While I enjoyed the read, I felt the same way about this book as I did about The Paris Wife – which is that I wish it had been about a completely fictionalized couple instead of the actual Fitzgeralds. It seems like an almost impossible task to accurately recreate larger-than-life authors like Hemingway and Fitzgerald. They both came off as complete villains in their respective stories, almost to the point of caricature. I mean, I know neither of them were saints — but I didn’t finish either book feeling as though the author had captured the true heart of these complex characters. All of that said, I did enjoy the story. Zelda Fitzgerald was clearly a complicated and fascinating woman. I’ve been interested in her for years, even visiting the hospital grounds in Asheville where she died and the house in Montgomery where she lived for a while. I am definitely going to read her biography at some point.

As a card-carrying member of the Treat Yo Self club, I bought myself flowers this week. This was (and is always) a good call.

As you may have read, Henry is now eight months old. It seems hard to believe – but that disbelief might be a result of his recent decision to wage war against all things having to do with sleep and bedtime. He’s been sleeping through the night (or waking only once) since October, which absolutely spoiled me. Now that I’m waking up three or four times a night, I’m longing for the REM-filled nights of yesteryear. Please let this be a short phase. 

I ordered my new glasses! Reno chewed up my two “good pairs” of glasses last month (or the month before? I honestly couldn’t tell you), leaving me with one wearable-though-chewed pair and one pair that stopped fitting when I got pregnant. They tell you your feet may change sizes. But nobody tells you that your glasses will suddenly be too small. So hooray! My new specs have already shipped and should be here soon. I promise to keep these out of my hound dog’s slobbery jaws.

So that was my week – how was yours?

eight months

8mosOur Henry Bear is eight months old,
and how the time is flying.
His days are marked with brand new tricks
like crawling and fake-crying.

He is now ALWAYS on the move,
yes, even when he’s sleeping.
Sometimes he stands, then can’t sit down -
this often leads to weeping.

He offers kisses on the cheek;
they’re sloppy and endearing.
And I am struck with wonder
at this child that I am rearing.

He hates to have his nose cleaned,
but he still delights in bathing.
He takes great joy in splashing;
water is his favorite plaything.

He watches carefully the world,
observing and reacting.
His laughter is a prize
which he awards for silly-acting.

He has two teeth, he sucks his thumb,
he fights us every bedtime.
And every day, he lights my world;
this baby is my sunshine.

Quote of the Moment

oconnor

When I was in high school, my friends and I kept notebooks full of our favorite quotations and song lyrics – mostly to call upon when we needed to evoke just the right emotion with our vague AIM away messages.

I still love quotes  - I pin them, reblog them, and I still carry a “quotebook” for jotting down my favorites. I love reading the Daily Thought from Real Simple, I delight in the pithy sensibilities I see in my feed from Sweaty Wisdom, and I am constantly inspired by designs from Lara Casey and, yes, even Weight Watchers.

So this afternoon, I decided to create this decade’s version of a quotebook – an instagram account just for my favorite quotes and sayings. Follow along at @qotm (short for “Quote of the Moment”) if you’re into that kind of thing.

The most recent Quote of the Moment comes from none other than my hero and fellow lady with lupus, the smart, sassy, and hilarious Flannery O’Connor.

Any favorites from your own quotebook you’d like to see illustrated? Leave them in the comments!