Click Away for Lupus Awareness

I love the internet. I also hate the internet. Google the word "lupus" and you are sure to find a myriad of stuff that is possibly (probably) untrue, outdated, infuriating, discouraging...Who has time for all that? There are a lot of wonderful resources out there, but it can take a while to separate the good from the bad. So after a year and a half of having lupus, what are my top go-tos?

1. My go-to lupus website: Lupus.org
When the doctors started mentioning lupus to me and I was overwhelmed with questions, the Lupus Foundation of America had answers. Everyday thousands of people worldwide visit the Lupus Foundation's website because of their wealth of up-to-date information. This, in my opinion, is the place to start and keep coming back to. This year, for Lupus Awareness Month, they're emphasizing taking action. You can learn more here.

2. My second go-to lupus website: LupusCheck.com
Lupus is not the same for everyone. so the key to effective treatment and care is the patient's ability to listen to their body and share what they're experiencing. This can be a lot harder than you would think. LupusCheck.com has downloadable resources to help lupus patients keep track of their symptoms and effectively communicate them with their families, caregivers, and doctors.

3. My go-to lupus reference book: The Lupus Book, by Daniel J. Wallace, MD 
This book is quite technical (not the type of book you take to the beach), but really helpful for understanding what is happening in your body. Reading this helped me to be able to communicate with my doctors better (and even helped me and my rheumatologist discover that I also have Sjogren's syndrome).

4. My go-to lupus blog: Despite Lupus 
This blog by Sara Gorman is my go-to when I need some lupus inspiration or advice from a "layman." She reveals her struggles, victories, and very practical advice on how to live a full life with lupus without being too touchy-feely. Unlike many blogs or books I have read, she is not angry, jaded, or in despair. She is a proactive entrepreneur who refuses to let lupus keep her down. She sells fashionable pillbags that are designed to help lupus patients easily carry, organize, and take their many medications. (I never leave the house without mine.) She even wrote a couple of books--I highly recommend--to help lupus patients, family members, and even children of lupus patients understand and navigate daily life with this disease.

Bonus: If you're a fan of Pinterest, there are a lot of lupus boards. You can see mine here. 

Confessions of a Former Superhero

I used to be a superhero. Or at least I acted like I was. I was unstoppable. I could do it all.

When I was diagnosed with lupus, I knew my life would dramatically change and everything would get harder. But I never imagined how hard "harder" would actually be. 

A recent statistic from the Lupus Foundation says that only 31 percent of adults with lupus work full time. Within the lupus community, I am in the minority.

I'm a full-time pianist. Between performing, accompanying, teaching, and long hours of practicing, my life is busy. Lupus has kept me from performing and working as much as I would like, but I beat the odds every time I do.

It's a lot of work to beat the odds. Most people who see me, even those I work with closely, have no idea what kind of pain I'm experiencing that day. There are some mornings when I wake up and ask my husband to help me get out of bed because my body is too stiff for me to do it myself. There are some days when independence isn't an option. I have to budget meticulously--not just time and money--things like energy and joint usage. There are some evenings when I'm so exhausted that I crash on the couch and take a nap so I have the strength to brush my teeth and go to bed. One fulfilling day of work can mean a week of pain and fatigue. 

For me, beating the odds means not letting my body and how I feel at any given moment have the final say for my destiny. It means everyday trusting God to help me face another day full of impossibilities. Beating the odds is hard. Really hard.

I confess that I'm not a superhero, but maybe that's ok. Maybe that's not what the world needs. Maybe the world needs people who, even though they're struggling, can be thankful for every good day. People who use the strength they have, even if it's not much, to live for something great and meaningful. People who, despite all the darkness in the world, can still live with faith, hope, and love, and leave a path for others to do the same. Maybe I like not being a superhero after all.

Why Lupus Awareness Matters (even if you don't have lupus)

I have lupus. Lupus awareness matters to me. But if you don't have lupus, why should it matter to you?

Lupus can take years (even decades) to diagnose. The period of waiting can be extremely painful and discouraging. The more we learn about lupus, the more efficiently the doctors will be able to correctly diagnose it, the more we can help those who suffer from it, and the closer we will be to finding a cure.

I didn't realize there was something seriously wrong with me until a few months prior to being diagnosed. Looking back, I had numerous warning signs for years: joint pain, extreme sensitivity to the sun, severe skin problems, fatigue... I had no idea there was an underlying cause for all of this. And lupus was nowhere on my radar. How I wish I would have known that my stressful lifestyle was making it worse, that exercising more wouldn't make me more energetic, that rest and "sleeping it off" wasn't enough to ease my pain. How I wish someone would have seen the signs and suggested that I get tested. How I wish I wouldn't have waited to get tested until I was in so much pain that I couldn't walk on my own and I lost a third of my hair. How I wish my husband and I weren't absolutely clueless when the diagnosis came. If only I had known.

Don't get me wrong. As hard as my life is, I do love it. I am blessed to still be able to work and pursue my dreams. But there are many people with lupus who are hurting in a different way. There are many who are angry, lonely, and in need of hope. 

You never know what may happen to you or someone you love. You never know who you may encounter. You never know what kind of opportunities you will have to be a light and help others.

This is why lupus awareness matters.

If you would like to help spread the word, check out the Lupus Foundation of America's website for a list of ideas.

IMHO...

It is so wonderful that we're allowed to have our own opinions and have the ability to share those opinions with the world. It is truly an amazing privilege that is very unique to our place in history.

For me, I have never been lacking of brilliant awesome many opinions and I have never been shy in sharing them. Of course, the world is not clamoring to hear my opinions as much as I would expect it to. At least, that was true until I had lupus. There's something about being a joyful person with a chronic illness. All of a sudden, your opinion starts to matter to some people. That's sort of what made me decide to start blogging. And I can't believe how many people have joined me on this journey!

There is a saying I heard a lot when I was growing up: "To whom much is given, much is required." There is responsibility that comes with what we have been given. And if you don't want to take responsibility, you are not exempt from the consequences. Words have power. They can encourage, they can hurt, they can make the ears dull. They can bring life or death. They can cause great change or cause something that needs to change to stay the same. So pick your words wisely. And if you don't, don't be surprised if you don't like the results.

So, let's take a moment to talk about social media. There's something about social media that has made us less skilled at the art of conversation. In a conversation, you don't just intermittently spout snippets of your opinion. You listen. Then you respond. You don't just respond to words. You respond to body language, voice inflection, and nuance. You respond to emotions like happiness and heartache. In a conversation, it is (hopefully) less about spouting your opinion and more about what matters most - people.

Social media allows us to make statements without context, without human interaction, without a conversation. The writer and the reader are blind to what the other is thinking or going through. We are often saying "mid-conversation" statements when no conversation had begun. We are given the illusion that we can say such "mid-conversation" statements and assume people are at the exact same place in our conversation. This is not how reality works. There is always context. And if we are not careful, our well-meaning proclamations of our opinions can be hurtful words in the context of someone else's life.

And that is the problem with our new found ability to declare to the world our opinions. We are too quick to stomp all over people in the name of "our opinion." You're going through something very difficult? Well I have an opinion based on a theory I have or something I read so I'm going to minimize what you're going through and treat you like you don't matter. And I am going to feel good about it because I'm exercising my right to free speech.

What have we become? Is this really the way we want to live?

To be honest, I'm writing this in response to a hurtful encounter I recently had in the social media world. Without going into any detail, someone was so focused on expressing their opinion about a matter that they flippantly said things that were extremely insensitive to something difficult my husband and I are going through. (Btw, if my husband says an issue is "hitting home because my wife has lupus," this is a hint that the topic is a painful one.) I do not believe that everyone needs to agree with my opinions. I do not believe that people should be restricted from having or sharing their opinions or beliefs. I also do not believe that our opinions are ever an excuse to treat people in a way that is uncivil, rude, or hurtful.

So, I propose we make a pact:
Let's remember that we can't see everyone's context.
Let's value people over our opinions.
Let's choose our words wisely.

Who's in?

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.