Silence.

The passing of time sometimes means that life is easier if I just forget about it for a while. Sometimes, I just don't want to think about Sjögren's. After all, the life of putting on a smile can be quite fulfilling for a while.

Doctors’ appointments come about once every six months for check-ups, so that gives me some time to fade into the life of normalcy for a bit. I still take my medicine three times a day, I still field questions about my bloodless fingers, I still scrub my contacts every few hours, I still regulate my water intake, I still watch my dry skin crack with each degree drop in temperature, I still can't breathe in the morning because of sinus problems, I still ache, and I still stress about getting stressed.

But these are all normal parts of my routine.

Rub your face. Worry about what you'll feel like tomorrow. Close your eyes. Try everything you can to get comfortable. Feel the aches and pains that you've been ignoring all day.

So, silence sometimes just means that I'm learning to be thankful in this very moment. I don't have to be thankful for Sjögren's, although it certainly spices up my life. But I can be thankful in it. I'm thankful to be able to connect with new people and to share my story. I'm thankful that I try not to take any moment for granted because I never know what's coming next.

When you ask me if I'm scared...of course I'm scared.

But, next time, consider asking me if I'm excited. There's a lot more of my story to be told. There's a lot more of my story to unfold. There are a lot of people out there who may benefit from it. There's a lot of hardship in this world, but language allows us all to unite around shared emotions and experiences.

If I'm ever silent for too long, don't ask me if I'm scared. Ask me if I'm thankful. Ask me if I'm excited.

Kudos to the Sjogren's Syndrome Foundation for all they are doing for advocacy and awareness. When I am silent, others are tirelessly working to unite a community.

Mine.

We all desire to find our place to belong. Starting as a young child, we try to make friends by sharing our chocolate chip cookies at the lunch table. We try out for soccer teams and give Girls Scouts a chance just so that we can be part of something. Some of us flourish in the making friends department, and these are the ones who are high fiving in the hallways and getting in trouble for talking too much in class. Others are instead picked last for the softball team in gym class and bounced around from club to club, never quite finding a niche. The age of the cyber world has allowed many to browse onto Facebook to peer into the lives of others who we think are living the dream and have found a true sense of belonging.

Who am I? A question we all want answered. Our desire to belong never fades, as we strive to determine what it even means to be. We bounce between jobs; we seek out our passions and we follow our heart to fulfill our deepest desires. We meet new people, and sometimes we even have to leave behind others who are taking away from the journey of self-discovery. Time becomes limited and precious as we age, so we keep those who mean the most closest to our hearts. The question of Who am I? seems to be a puzzle with pieces, or various aspects of life, that we are constantly trying to put together.

And if only the puzzle was simple enough to just piece together.

Instead, life throws us curve balls and we must decide every day how we are going to react to them. Some of them are expected troubles that we must overcome with time. But others come at us from our blindside. These are the ones that knock us over and leave us on the ground for quite some time as we question whom we can really trust in this world. These are the ones that are so hard to grasp and get our heads around. We always want to know Why me? Why this? Why now?

If we let these curve balls get the best of us, we will certainly have trouble finishing the puzzle. All we can really do is keep sharing our chocolate chip cookies to make new friends, keep trying out for teams, keep connecting with family, and just keep striving to uncover new passions. We have to get up from the curve balls and realize that we have two options…

Hide from our misfortune in shame and let it strip us of all of life’s joys.

Or be proud to call it Mine.

Sjögren’s is something I can always count on as a piece to my puzzle. It belongs to me, whether I like it or not. There are days when I want to give it back, but there are also days when I am proud to know what I have made it through. We all have something, but Sjögren’s is Mine.

Fat Face.

Here is an excerpt from my memoir:

“What is that? What is wrong with you?” They all just stared. The first time it happened, we were at the lake and I remember lying on the sofa with my right cheek on the pillow. My whole family circled around me, all faces hovering above with eyes wide opened and amazed.

They poked. They prodded. They whispered. I just cried.

I think they always thought that I couldn’t hear them, but I knew they all didn’t know what to do with me. Where do we take her? What is happening? We were practically in the middle of nowhere. Lake Gaston, North Carolina. The closest grocery store at that time was in Roanoke Rapids, nearly 30 minutes away. It was the closest thing to civilization, so we always called it “going to town.” They had a Wal-Mart and a buffet restaurant called Ryan’s with real southern hospitality, so “town” seemed rather fitting.

My parents took me into town to the closest hospital. “Name please,” the woman at the front desk didn’t even look up from her computer screen.

I couldn’t even open my mouth because the left side of my face was so swollen that it looked like I had a tennis ball shoved in my face. I tried to make noise come out of my mouth, but every time I did I could literally feel the mass growing. My face would expand and throb with shooting pain. My skin was trying to stretch around this new mass that was tender to even a soft touch and felt like it was growing by the second.

“Name pl…” she grew irritated, but quickly stopped mid-sentence when she looked up to see the growth on one side of my face and tears just rolling down. “Um…you can just go right on back. We’ll worry about the rest later.” Her thick southern accent made me feel like they would take great care of me, but turns out they aren’t very sophisticated medically in those parts of town. “How y’all doin’?” worked well for greeting people, but it didn’t speak volumes about their level of care.

The doctors asked me questions about my history, what I had eaten, how I was feeling. All the common questions. I didn’t have answers. I woke up and my face was huge, and the pain was unbearable. They didn’t have answers either. They thought it might be the mumps, but they just had to give me a label and that seemed fair enough. They really had never seen anything like me before.

They gave me a series of antibiotic shots in my butt with hopes of clearing up the “infection.” It seemed reasonable: Your face swells up huge and you have a fever of 103°, something must be infected. The series of shots meant that I had to return multiple days for multiple shots. My parents thought about taking me home, but I begged to just stay at the lake. Sure it’s desolate and was quite a drive to the hospital, but the lake is a peaceful oasis for all of my extended family. All year we count down to our time together at the lake. It’s what gets us all through the cold winters. It’s the only place in the world that doesn’t change year after year, so why would I want to be anywhere else?

So we stayed despite the level of medical expertise. The green couch is really what I remember of those days. Lying on the old, green couch that had been there forever. But it was the perfect couch, so why change a thing about it? Right cheek down on the velvety, plush couch. Left fat face up. Staring straight ahead at the pier and the water and all of my cousins jumping off the diving board. The neighbors brought me magazines, but all I really remember is them staring.

Everyone stared. Even my family would just stare. I thought that they might get used to my new fat face after a few days, but they couldn’t quite disguise their amazed eyes. Not just amazed, but curious and even fearful eyes. I cried because of the incredible pain, but I also cried when people stared. I rarely looked in a mirror, so I only knew it was bad from their reactions. It’s a whole different view from the inside looking out, and people forget that sometimes.

Exactly 12 days later, after multiple shots and tons of antibiotics, I was feeling better. They had fixed me, so what else needed to be done? I was better in time to start tenth grade, so life was fine. As long as I could go to cheerleading practice and look at the cute boy in history class, my life was complete.

The endless years of blood tests began that day at the lake. There were a lot more questions that needed to be answered when the fat face returned every year.

Fog.

If they catch me in the bathroom at work, I might give away a little piece of my Sjögren’s secret.

“Oh, no…” they say. “Did your contact fall out?”

I’m scrubbing away at the white film that builds up on the bottom half of my contacts, so I can’t really see them as they are staring at me through the mirror. I put my head down and focus on scrubbing. I know they are staring, but it's all such a blur.

“No…I…” I debate how to handle this. I debate how much to reveal. I debate how to say it. “I…I just have a problem.”

I have a problem? Why did I say that? My one opportunity and all I blurt out is I have a problem?

“Hmm…” they say as they pretend to focus on washing their hands. They scurry out as quick as they can. I just keep scrubbing.

Well, one failure, but don’t worry, champ…you'll get ’em tomorrow.

“Oh, no…” they say. “Having trouble with your contacts?”

The same routine. Every day. But usually a new person catches me in the act.

They mean well. Small bathroom talk to be friendly towards a co-worker.

“No…I…” Here’s my chance. Just say it. Just say something. “I…have an autoimmune disorder.” Well, that will get their attention. They suddenly are grabbing way too many paper towels and just keep grabbing for them as they turn to face me. They just keep wiping their hands dry, again and again. Their hands are definitely dry by now, but they feel like they have to stay. Who has the heart to walk away after that?

“My eyes just get really dry, so sometimes I can’t see that well because I get this white stuff on my contacts. It’s worse when I’m tired or stressed.”

I guess that’s enough to reveal. They don’t really understand Sjögren’s. They can’t really get it. How could they?

They smile. Sometimes they say they're sorry, or they look sad or even just confused. One simple bathroom small-talk moment suddenly is a lot more than they expected.

They smile and walk away. I just keep scrubbing. Scrubbing and scrubbing so that life isn’t hiding behind such a fog.

Feel Good.

There’s this picture frame that I hung up on my wall at work. It’s right by my computer screen, so I catch myself staring at it a lot. It’s simply three rectangular frames strung together by ribbon. It’s bright and cheery orange with polka dots and flowers and bright blue ribbon that loops at the top to hang by a thumb tack.

The top frame reads, “Feel good.” The middle, “Live well.” The bottom, “Be happy.” In my mind, I read it from top to bottom:

Step 1: Feel good.

I get really hung up on this one some days. In the frame is a photo of my family on our recent Southern Caribbean cruise. I felt okay on this trip, but I remember needing a vacation from the vacation. I remember getting so dehydrated from the scorching sun. I remember one night literally crashing onto the bed and slipping into a coma.

I wanted to keep up. But I just couldn’t. My body wouldn’t let me.

But what really gets me is that “Feel good.” has to be Step 1. So, if I don’t feel good then can I not go on to Step 2: “Live well.” and Step 3: “Be happy.”?

I personally think the phrase “live well” is pretty awkward. How are you living? Well.

They’re all commands, too. You must feel good. Just do it. Why can’t you just say it and want it and think it, and then it will come true?

And if I can’t get past Step 1, then do I not get to live well—whatever that means—or be happy?

All three frames are filled with images of friends and family. For whatever reason, I really like the frames. Maybe I like the idea of commanding my body to feel good. I like seeing my friends and family there to support me as I figure out what it means to live well.

And I like the idea that if I tell myself to feel good and live well, then I can definitely command myself to follow Step 3: “Be happy.”

I think I just like that the frame is simple and colorful. I bought it because it was aesthetically pleasing, but it suddenly means so much more—probably way more than the designer intended.

Feel good. The first ticket to happiness.

Doctors.

“Are you currently taking any other medications?”

I usually sigh after someone asks me this question. It’s usually the young nurse who is still looking at her paper when she asks the routine question. She’s in such a hurry to whip through height, weight, and symptoms that medications is just another one of the questions.

I sigh and give her the rundown about Sjögren’s.

“How do you spell that? And what is that for?” She crosses out her chicken scratch and makes every attempt to sound out the foreign words.

Once I start spelling each prescription and giving an in-depth description of what exactly each one does, she usually looks up. I say usually because it’s pretty much the same drill every time.

Just last week a doctor was actually the one questioning my medications and my condition. A doctor.

“I actually have an autoimmune disorder called Sjögren’s,” I said as I was sitting on my freezing and bloodless hands on the end of the exam table, swinging my feet as I tried to explain.

“What is that exactly? I’ve had a lot of patients asking me…you know, since Venus Williams has it,” she said. Her face was intrigued. She wasn’t caught up in my records or her notes or anything. She looked me in the eye and sat down to learn all about it.

I’m not an expert of all cases, but I’m certainly an expert on my case. I always struggle with where to start in my explanation, but I usually just start at the top of my body and work my way down. There are a lot of years to explain and a lot of unknowns to reveal, but I try to deliver it all with a smile.

It’s nice to be able to educate doctors.

Nighttime.

I’ve always been afraid of the dark. Still today, at the age of 21, I run up the stairs if I am the last one downstairs who has to turn out the lights. My heart races as I try to escape the darkness that always manages to follow me.

What is it that scares me about the dark? Well, you can’t see a thing. Sure, that’s the obvious answer. But there really could be anything there. Especially in the phase where your eyes aren’t adjusted and it is literally pitch black.

Darkness has so much power. Fear of the unknown.

Sometimes I hear noises as I’m falling asleep or I see a weird shadow, so I reach for the lamp in full panic mode.

Nothing there. I feel so defeated when I turn the light on and there’s nothing there.

There’s also another element of darkness.

You manage to drift off to sleep and enter the world of dreams. You wake up in the middle of the night and it’s so dark that you could be anywhere in the world. You’re in a groggy state, so you try to look around to get your bearings. But sometimes it’s just too dark to decipher anything.

There’s this one moment when you can’t figure it out and you actually forget who you are. Where am I? Who am I? Did that really happen?

Just like turning on the light when you hear a noise, only to find that there’s nothing there, you feel so defeated when you snap out of the daze and realize that it wasn’t all a dream. The moonlight shines through the window just enough to illuminate your alarm clock—a quick snap back to reality. Your problems didn’t erase, and you can’t go back in time to a different body.

Darkness erases a lot. It erases our vision and our comprehension and our grasp of reality for just a second. But eventually you wake up and have to face the light where there’s no question about what’s in front of you.

Smile.

A jolly old man jogged past me on Friday morning. “Jolly old man” seems like such an overused expression, but there is just no better way to describe him. His elbows were out wide and he waddled from side-to-side as his stark white hair curled over his stark white sweat headband. And, yes, his stark white T-shirt was in perfect coordination with the jolly-jogger look.

He waddled my way and stopped cold in his tracks. “Smile, young lady, it’s Friday!” He grinned from ear-to-ear. He certainly wasn’t out jogging in preparation for a marathon, as he was more concerned with interacting with his surroundings than pushing for a record time.

I think the outfit was just a nice attempt to be in the jogging spirit.

I chuckled back and put my head down to stare at the sidewalk. I really didn’t even know I wasn’t smiling. Fridays are pretty exciting. But Fridays are also exhausting.

Fridays are when my body screams that it can’t take anymore—no more early mornings, days of stress, and late nights. No more pretending to be normal.

Sleep.

Seasons.

The weatherman on the radio this morning let me know that fall is fast approaching. Goodbye long summer nights, hello crisp fall air.

Just like everyone else who needs a change of pace after a few months of the same season, it’s nice to hear that we can look forward to sweaters, bonfires, and changing leaves. Sure, we’ll all miss the warm summer weather, but there’s something about the fall air that wakes up your whole body and really makes you feel good.

For me though, seasons mean a lot more than just a change in wardrobe. Each season brings on a new challenge with Sjögren’s. That crisp, fresh fall air that I love to breathe in also sweeps across my fingertips and toes, leaving no trace of blood behind.

Part of Sjögren’s for me is dealing with Raynaud’s Phenomenon, which is inadequate blood flow that is triggered by cold weather. The fall is particularly tricky because it’s sometimes warm enough that my fingers and toes are fine, but other times they are washed-out white for sometimes an hour before I start to notice the red blood making its way back. I just never know what the fall weather will bring for me, but I do know that it is much easier than winter.

Let’s get ready for fall—a season when my disorder of “invisible” pain becomes a little more transparent, as people start to ask about my ghostly hands.

Tears.

One new text message and life is suddenly different. The alert for this new message didn’t sound any different than an alert for a normal message that might read, “Hey, what’s up?” or “What are you wearing tomorrow?”

But this message was different, and it certainly wasn't about my plans or what the weather was like.

News of a loved one’s death hits you like a ton of bricks. It’s not just a saying. Your mouth literally falls open and your hand has to cover it to stop yourself from drooling, or maybe just to remind yourself to force the air in. It’s a tingly rush of adrenaline, but not the kind that spreads excitement through your veins.

It’s the kind of adrenaline where your mind and your body can’t quite communicate to figure out how to react.

Shock. Your heart really does beat faster. Your body really does shake. And it really does hurt.

Today is 9/11, a day of mourning for our country. A day of remembrance of a tragedy that happened 10 years ago today.

It’s also a day when my boyfriend and I heard that a college friend tragically passed away.

Events like this make Sjӧgren’s seem so insignificant. It is a blessing to be alive, regardless of the obstacles that I face, and I hope that I never take that for granted.

Despite my dry eyes, I am still able to produce enough tears to cry.

Rest in peace, Kenny.

Pucker Up.

For those Sjögren's patients who suffer from inflammation of the parotid glands, like myself, lemons and sour candy are your tickets to salivation.

Try pushing down on your glands that run on the side of your face starting by the bottom of your ears. Normal people don't have to do this to salivate, but my body needs a little help to trigger these glands.

I remember the first time the doctors gave me a prescription ticket written out for unlimited "Sour Patch Kids and Lemons." It seems like a glorious prescription—a child's dream. I haven't always been the right girl for the job because I can't say I love sour candy, but my brother always loved helping me with the doctor's orders.

Stoplights.

You know that split second when the light is green, but then it suddenly turns yellow and you have to make a decision: floor it or slam on the breaks?

That’s the decision that I live with every day with Sjögren’s. Live life to the fullest or wallow in my pity. Physical exhaustion from chronic illness sometimes causes a road block, but I like to think that I’m charging full speed ahead.

There’s also the whole new craze of distracted driving. You check your phone and change the radio station while the windows are down and your hair’s blowing through the sunroof. That sunlight beaming in just feels so good, and this is exactly the song that you’ve been waiting to hear.

You are so distracted that you don’t even notice that you had a choice when that light turned yellow. In your mind, that light was always green and you maintain that speed without even a flinch of hesitation.

Welcome to the world of denial. Or maybe it’s just a world of distraction. Sometimes it’s easier to just forget that I have Sjögren's and, psychologically, it might even be the better option to forget.

But, don’t worry, I’m reminded every day…three times a day…when I pop my pills. Like a buzzing gnat in your ear that you keep swatting away. Or that bug bite that no matter how hard you try and try to forget about, you just can’t stop itching it.

I try to swat away the reminders, but it’s hard to forget about a disease that impacts nearly every part of your body. I would love to be a distracted driver, just once. So relaxed and encompassed that I don’t even realize that I have a decision to make and I just glide through the stoplight with ease.

Your body never fails to remind you. Pain and discomfort are hard to forget.

Earthquake.

On August 23, 2011, the East Coast experienced its first earthquake in over 100 years. I was at my desk when my corkboard filled with pictures began to shake. A co-worker stood in my doorway with a panicked look and my heart began racing as I realized that the shaking wasn't stopping.

People shrieked and some ran. It was enough time that we were all in the hallway, first peeking out and then flooding out, wondering what was going on.

An earthquake. We evacuated the building and everyone came with purses and cell phones in hand. Who do you call at a time like this? Should we just laugh it off or should we actually worry enough to reach out to our loved ones?

Sheer panic spread across washed out faces. A buzz spread through the crowd of what to do next—where to go, whom to call. Fear of the unknown.

In the end, a few dishes were shattered. Some things fell off of shelves and out of closets. Some roofs were damaged. I noticed a bit of debris falling from our old building.

But we're all okay. We all tweeted about it. We all googled it. We all kept the conversation flowing with quake jokes. But we're all okay.

We learned that we value security. We value our loved ones. We value safety.

People were in such a panic because they lost control. But for those of us with chronic illnesses, we’ve already experienced the feeling of losing control—the feeling of something much bigger than yourself taking over your body.

Venus Williams announced to the world that she has Sjögrens. I was diagnosed with Sjögren’s when I was 16 years old and I am ready to share my story of having to throw my hands up, surrendering control.