Please don't be offended...

When you have lupus (or any chronic illness), it's easy to be misunderstood. This misunderstanding can often leave people feeling hurt or offended. So, on behalf of lupus patients everywhere, here is my plea: 

1) Please don't be offended if I back away when you try to hug me or shake my hand during flu season.

It's not that I think you're gross. Because lupus causes the immune system to be overactive, many lupus patients have to take immunosuppressives. This means that it's easy for them to catch illnesses--not just the flu, but anything that's contagious--and also that their ability to recover from illness is tremendously hampered. Something that could be a little, passing bug for you could be a long, painful struggle...or even a life-threatening complication for me.

2) Please don't be offended if I use hand sanitizer after shaking your hand or spray Lysol in your general direction.

Again, I don't think you're gross. But, my doctor told me to do it.

3) Please don't be offended if I say "no" to your invitations to hang out.

I love hanging out! I promise! I really do! But living with a chronic illness is a daily battle. Life - work, cleaning, driving - can be draining. At the end of many days, I am met with pain and fatigue. Sometimes, the thought of adding one more thing (even something fun) is overwhelming. In addition, overextending myself puts me at risk of a flare. And a flare means missing work, the inability to do simple things for myself, taking medicine that is hard on my body...

Whenever I consider hanging out with people, I have a lot I have to weigh:

- Do I feel well enough to hang out?

- Do I have enough strength for the activity I'm being invited to?

- When will I be able to replace the rest time I will miss?

- Is this night of hanging out worth the consequences I will face for the following week(s)?

4) Please don't be offended if I lack my typical level of animation when you're telling me something exciting.

I'm probably truly, genuinely excited, but lack the strength to show you at the moment. I probably want to jump up and down, clap my hands, squeal, and give you a big hug, but the only thing I have the strength for in the moment is to stare back at you with a barely-there, Mona Lisa smile. If you have a spunky personality and lupus, that probably means that you try to be spunky until the spunk runs out...at which point you become the opposite of spunky (A.K.A. sleepy).

5) Please don't be offended if I don't eat that special dish you cooked just for me.

I bet it tastes amazing. I also bet it contains some ingredient that is really good for everyone else but would kill me. Alfalfa. Garlic. Edamame. Aren't these suppose to be really good for you? Yup! But alfalfa sprouts are the don't-ever-under-any-circumstance-consume-this-if-you-have-lupus food, garlic boosts my immune system and causes me to have arthritis and fatigue, and soy products increase lupus symptoms. So, yeah...

6) Please don't be offended if I forget your name or something you just told me (and repeated for me 20 times).

I have an amazing memory. I memorized about 100 pages for my graduate piano recital. I can recount every detail from a conversation that happened five years ago. But if I'm tired, I get lupus fog and all short-term memory and sentence forming skills go out the window. Just ask my husband.

On a very different note...

7) Please don't be offended if you pray for me to be healed and I still have lupus the next day.

Thank you so much for praying for me! I believe God is my Healer. But I also believe that God works in His perfect timing and that He is using my life to communicate hope to people who have none. And, don't think God isn't answering your prayers! Every time I have a doctor's appointment and they see progress they didn't think was possible, that is a miracle.

My 2013 Recap in Books

I love to read. Last year, I wrote about my favorite books that I read in 2012. As I start the new year, I want to share 5 books I read in 2013 that left a mark on my life. These are books that - if you let them - will leave you a little different.

1. Listen To This, by Alex Ross

A beautiful book about music - from Mozart to Bob Dylan to Mitsuka Uchida. This book also has suggested listening for each chapter. This book will make you listen to music in a different way.

2. All In - You are one decision away from a totally different life, by Mark Batterson

This is the sequel to The Circle Maker. As The Circle Maker focuses on prayer, All In focuses on action. It is about "going all in and all out for the All in All." This book will challenge you to live a different way.

3. Dying Out Loud: No Guilt in Life. No Fear in Death. The Story of a Silk Road Nomad, by Shawn Smucker.

I can't remember the last time a book brought me to tears and inspired me so deeply. This past year was difficult for me, but this family's story helped me find meaning, encouragement, and purpose in the midst of difficult circumstances. This book will make you look at suffering and what it means to follow God in a different way.

4. Quiet - The Power of Introverts in a World that Can't Stop Talking, by Susan Cain.

This book is liberating for introverts and eye-opening for everyone. A must read for leaders and ministers. This book will make you look at people a different way.

5. The Musician's Way - A Guide to Practice, Performance, and Wellness, by Gerald Klickstein

Even though this book is targeted to the undergrad or graduate music student, the casual musician or professional can grow from this material. The book has three sections: Artful Practice, Fearless Performance, and Lifelong Creativity. If you are a musician (or singer), this book will make you practice and perform in a different way.

A Special Anniversary

This is a very special day.  On this day last year--two days after my birthday--the doctor called to inform me that I have lupus.  On this day, my life changed and everything took on a whole new meaning.  Words and phrases such as joy, pain, love, support, strength, faith, passion, prayer, and hope hold much deeper meaning to me now.  Even words like routine and normal carry with them a beauty I never saw before.  I don't know if it's something that can be explained with words.  I think that maybe it's something that can only be felt in the depths of your being.  I think that's why I love being a musician.  I love being able to express things that are too deep for words to convey.

When people hear that I have lupus, they typically say, "I'm so sorry."  I understand their empathy, but I don't feel the sadness they express.  What I feel can be better described in what people typically say next: "If you didn't tell me, I wouldn't know you had lupus.  You're just so full of joy that it's hard to believe you're going through anything!"  But that's the thing.  I'm going through something.  Something very real and hard and painful.  That's my everyday.  Real.  Hard.  Painful.  So when I get out of bed in the morning without my husband's help, I have a reason to be excited for the day ahead of me.  When I play a piece on the piano that most pianists who are well can't play, I have a reason to feel like I'm more than a conqueror.  When I'm in church and able to stand alongside other worshipers and participate, I have a reason to thank God and say He is good.  When I'm struggling and my husband holds me at the end of a long day, I have a reason to fall more in love.  

So today is very precious to me.  Today I look back and reflect on a hard year...and I wouldn't trade it for anything in the world.  Why?  Because today is the anniversary of when I started to learn a new definition of what it means to live.

A Word (not mine) Of Encouragement

Today, I feel like I experienced almost every human emotion possible.  I was very tempted to spread my negative feelings and publish my rants for everyone in SocialMediaLand to see.  (Oh, how we love to tell the world how we feel about stuff as though we are making the world a better place by doing so.)  But what is the point in that?  I don't just want to be heard.  I want to have a significant life - a life that means something, a life that makes other people better.  Sometimes, I can't come up with good words.  Sometimes, if I want something good to come out, I have to disappear and let God speak because I'll just make a mess.  So if you're discouraged, angry, worried, heartbroken--I felt all of these today--here are some God words that encouraged me tonight:

"When you pass through waters, I will be with you; 
     and through the rivers, they shall not overwhelm you; 
when you walk through fire you shall not be burned, 
     and the flame shall not consume you. 
For I am The Lord your God, the Holy One of Israel, your Savior."
          (Isaiah 43:2-3)

Leaving the place that I know

As I type this, I'm surrounded by boxes and boxes and boxes.  This is our last full day in our apartment before friends come to help us move into a house tomorrow.  There are so many reasons we wanted to move:  It's way too tiny and we ran out of room for our books.  We're tired of sharing walls and hearing our neighbors stomp up the stairs in the wee hours of the night.  We're tired of dealing with the management office workers that make horrible decisions and don't care...  We're ready to move on.

But this morning, I find myself a little slow to work on the last bit of packing.  Yes, I'm tired from all the packing I've done up to this point, but what I feel is a little more than just tired.  I'm a little sad.  I'm sad because this tiny space has been my home for the last four years.  Four years.  That may not seem like a long time, but that's the longest my husband and I have stayed in one address since we both left home to go to college.  This place is comfortable.  It's familiar.  I'm going to miss the farm road scenery.  I'm going to miss the camel we say "hi" to everyday on our drive home.  (Yes, there's a camel.  There are also alpacas, horses, donkeys, cows, and other animals we never figured out so we just call them "beasts."  On our drives home, we've been surprised by deer, wild turkeys, and owls.  Our drives home will probably never be so adorable again.)

Over the past month, in the midst of packing mayhem, I've had moments when I briefly think, "Wouldn't it be easier to stay where I'm at?  Am I really done with this place?  Do I really want to move on?"  Yes, it would be easier to stay where I'm at.  But even though I may not feel 100% done with this place, yes, I really want to move on.  If I stay here, I will miss too much: 

     an adorable house
     in an adorable neighborhood full of trees and pretty houses
     with cute shops and restaurants within walking distance
     a front door that's red and makes me think of old houses in DC
     a fireplace
     a backyard
     a front yard with trees
     space for a Christmas tree
     space to hide the Christmas tree when it's not Christmas
     space to dedicate a whole room to our books and have a home library
     space for my pianos (yes, plural)
     space to host a party with more than two friends at a time
     space to play board games and do puzzles
     space...

It's worth leaving the comfortable and familiar to have something that's better.

Once upon a time, there was a girl with long hair...

I used to have long hair. It was beautiful. It made me feel beautiful.

...But then lupus happened. Discoid rashes on my scalp caused my hair to fall out in clumps. I still had the hair on the top of my head, so I got a haircut to try to hide the bald spots underneath. As my life was dramatically changing, a dramatic haircut seemed appropriate. (Thank you, Robin @ Moda Salon!)

After starting treatment, more hair fell out. I had a total hair loss of about 50%. As a woman, losing my hair was very emotional, often humiliating. I could push through the physical pain and even feel like I could conquer the world. But every time I saw myself in the mirror, it was a harsh reminder that I was sick. I like to think that I'm a positive person, but it was hard to be positive. I felt ugly and less feminine. I felt like a freak. For months, I never left home without a hat. I wanted to hide.

I didn't feel like I looked beautiful, but I made a choice to BE beautiful. I may have lost my hair, but I could still smile and laugh. I could still tell stories and play music. Even still, with all of the dramatic changes that lupus brought to my life, I wanted to hold onto as much of my hair as I could. But I realized I was holding on just to hold on. It was time to let go and move forward. So when my hair started to grow back in the empty spots of my scalp, I was inspired by Anne Hathaway in Les Mis and made a bold decision to chop it all off and start over.

Today (about 9 months after the diagnosis) I'm slowly growing my hair out again, but I'm fully aware that at any moment, it can fall out and I'll be back to a pixie cut...and I'm okay with that.  Hair grows back. My life is still good.  I can still be beautiful.

Thanks to Chad @ Moda Salon for the pixie haircut and convincing me to not buy a wig. Thanks also to my husband for telling me I'm beautiful everyday.

May is Lupus Awareness Month

Last fall, when the doctors first mentioned I might have lupus, my first thought was, "It can't be!  Dr House said that it's never lupus!"  My second thought was, "What IS lupus?"  Systemic lupus erythematosus (aka, "lupus") is an autoimmune disease in which the immune system can't tell the difference between a good cell and a bad cell, so it starts attacking everything.  Every lupus patient is different, each dealing with their own set of symptoms.  For me, some of my symptoms include arthritis, rashes (which caused about half my hair to fall out), severe dry eyes, and fatigue.

Here are some facts I compiled from The Lupus Book, by Daniel J. Wallace, MD:

- In the United States, nearly 1 million people suffer from lupus.  It is more common than better known disorders such as leukemia, multiple sclerosis, cystic fibrosis, and muscular dystrophy combined.  Those who develop SLE do so in the prime of life.  And 90 percent of these sufferers are women, 90 percent of whom are in their childbearing years.  Moreover, the effects of the disease disrupt family life and account for billions of dollars in lost work productivity.

- Lupus can be a very difficult disease to diagnose.  Many lupus patients look perfectly healthy, but surveys have shown that newly diagnosed patients have had symptoms or signs for an average of 3 years.

- Research on lupus is also relatively underfunded compared to studies of other life-threatening diseases.

 So, what can you do for Lupus Awareness Month?

1.  Put on Purple on Friday, May 17 and tell people why.
2.  Post facts about lupus on your social media pages.
3.  Donate to help with lupus research.

(For more information, check out www.lupusawarenessmonth.org.)