Piano Recitals and Lupus

In a little over a month, I will be giving my first piano recital in three years. The last time I gave a recital was months before I was diagnosed with lupus. At the time, I had just earned my Master's in piano performance. The path to that achievement felt like a huge mountain climb, made even steeper by carpal tunnel syndrome and tendonitis in both my hands and wrists. I had no idea that I had a bigger mountain waiting for me right around the corner.

Days before my last "pre-lupus" recital, I wrote in my journal:

Sunday, July 8, 2012

     My shoulder keeps slipping out of place and the joints in my hand are swelling. I was planning on taking a break from the pain medications this summer, but instead I'm taking more pain pills than I've ever taken in my whole life just to function. I have some important performances coming up this month. It will take a miracle for my hands to endure the physical requirements of my pieces and make it through from start to finish. At any moment my hands could stop...I go into every performance with a strong awareness that it could be my last and it will happen only because God will make it happen.

After the recital, my health continued to grow worse:

Sunday, July 22, 2012
     My hands are still painfully swollen. I have pain in my feet, knees, shoulders, and neck....even with all the Mobic, Tylenol, anti-inflammatory cream, and Tiger Balm. It's been going on for about a month now. I'm starting to get worried. Could this be something serious? What is happening to me? Will my body ever have rest from all of these medical problems? I'm only thirty, but I feel like my body is falling apart and shutting down. Even though I know God is taking care of me, I'm still afraid.

I often hear people say, "God will never give you more than you can handle." When it comes to hard stuff in life, I think that's a load of crap. In the months that followed these journal entries, God definitely allowed me to go through way beyond what I could handle. Every morning, every night, I cried to God for mercy. I can't handle the pain! I have absolutely no strength left! I can't go through this one more day! I wasn't being dramatic. I was in too much pain to move. Playing the piano wasn't possible. I had lost over twenty pounds in less than two months. At least a third of my hair had fallen out. And without a diagnosis, there was nothing the doctors could do to help me. I had nothing in me left to keep going. And I was completely dependent on God to sustain me.

So a little over three years later, I'm doing a piano recital. (At this point, I'm tearing up as I type.) So yeah, I think this is pretty awesome. Even if I end up making a lot of mistakes and the performance doesn't sound anything like how I practiced - I really hope that's not the case and that it's amazing - I'm just so happy to be able to play and perform again. To be honest, I'm so glad God let me go through more than I could handle a few years ago. If He hadn't - if He would have let me have easy - I don't think I would experience the profound joy that I have when I play. I'm sure I still would have had joy, but not quite so profound. Music wouldn't be quite so precious and this performance wouldn't be so special. That's the beauty of hard things: They make the good things so much better. Oh, how I love how God shapes life's adventures!

To read more about my piano recital adventure, click here and here.

Remembering

This time of year makes me very contemplative. October 7 is my birthday and October 9 is the anniversary of when I got the call from the doctor telling me I have lupus. So October 8, 2012 is a sort of "dark day" in my memory. I remember the physical and emotional pain of not having the strength to get out of bed myself. I remember the questions in my head, wondering what was happening to me and asking myself, Am I dying? I remember the agony of waiting for the answers to come...wondering if they would ever come.

The past three years since my diagnosis have been a whirlwind of hard and wonderful. I am thankful for life - so much more thankful than I was before I had lupus. I'm thankful or my husband. For my work. For the people I love and the opportunities before me. For the ability to see God's handiwork a little more clearly. So much in my life means more to me. And the unimportant things mean so much less.

And so when it comes to anniversaries, they feel weightier to me. I can't just dismiss them. I need them so I don't forget. I don't want to forget what I've been through. Even all the horribly hard stuff. I want to remember it all....because it's all the hard stuff that makes the good stuff all the more sweeter. Life is so much harder with lupus, but I am so much happier because I feel the joy of every victory, every good day, every beautiful moment.

So today, on the anniversary of that day between my birthday and the call from the doctor that changed everything, I remember what it means to be truly alive and I thank God for another year.

If I Could Do It All Over Again

If I could do my post-diagnosis life all over again, there's one thing I would do differently. I would re-evaluate my work situation and make some changes. I don't think I would have given up my work at that point, but I would have chosen a different mindset. Instead of, "What can I do so that I could keep going at this crazy pace and work load?" I should have asked different questions:

Is this a healthy pace or work load even for a healthy person? (It wasn't.)

Does my work environment enable me to make healthy decisions or is it a hindrance? (It was definitely a hindrance.)

What things about my job are way beyond what I know my body can handle? Are those things that are worth the consequences or is the cost too high?

What is my physical condition at the end of my work day? (I was useless.)

Do I have energy for anything aside from work? (I didn't.)

What do I need at my work to ensure I can continue to work as long as possible?

How is this job affecting my quality of life in general?

If I could do it all over again, I would have been more intentional about educating the people over me in my work. (I tend to be much better with those who are below me.) I would have sat down with them, brainstormed solutions, and gotten things in writing.

If I could do it all over again, I would be less concerned with proving that I could still do it all and more concerned with doing what matters most.

Lupus Awareness Conversations

This weekend, I was standing around after a gradation talking with a bunch of friends (and some friends I just met). I randomly asked, "Are you guys wearing purple on May 15th for Put on Purple day?" This turned into a conversation about Lupus Awareness Month.

A girl I don't know very well asked me, "What's your connection with lupus?" 

"I have lupus." 

She admitted that she didn't really know anything about lupus. So my husband smiled and said, "THAT's why we need Lupus Awareness Month!" 

She then asked, "What are some things that people need to know about lupus?" I began to spout out some points off the top of my head:

- Lupus can affect any part of the body and each lupus patient has a different set of symptoms. It is the great pretender because it can look like a lot of other diseases.

- It takes an average of six years for people to be diagnosed with lupus.

- They're not exactly sure how people get lupus or what causes it.

- There's only one medication specifically for lupus.

- People who don't have lupus need to be aware of it because many people with lupus do chemotherapy or take immunosuppressives. This means that it is very easy for them to catch things and get infections which can lead to a life-threatening complication. (At this point, an old friend said, "Yeah! That's why I told her I was fine when a coughed earlier!")

These are five things that I didn't know when I was diagnosed a few years ago. (You can read more about my cluelessness here.) This conversation is a perfect example of why I love Lupus Awareness Month! It creates opportunities to have conversations that would otherwise be very awkward. And it really does help bring awareness and understanding to a disease that is still such a big mystery.

Want to know more? Check the Lupus Foundation of America's Lupus Awareness Month Facts or the KNOW LUPUS Card Game (which allows you to help raise money for lupus research just by playing for free!).

Lupus Awareness Month, No. 3

This is my third Lupus Awareness Month. When I was diagnosed with lupus about two and a half years ago, I knew two things about the disease:

1. Dr. House said, "It's never lupus." (Apparently, sometimes it is.)

2. One of the contestants on America's Next Top Model had it and it made her hair fall out.

"Lupus" was a scary word to me because I didn't know what to expect. I didn't have any family or friends who had lupus  - no one who could tell me their personal experiences with the disease. I've known people with cancer, diabetes, Crohn's...but no one with lupus.

And then, there was the frustration I felt every time someone said, "You have lupus? I've never heard of it." Educating myself about lupus was hard. There was a lot of ground to cover in a short amount of time. But that was nothing compared to the task of educating the people I work alongside and live life with. There were things they needed to know. And I was far from equipped to give them the information they needed.

So I am so thankful for Lupus Awareness Month. For the education it provides. For the funds it raises to help find a cure. For the community it facilitates. For the tangible ways it enables people to show support and give encouragement to those who are affected by lupus.

Check out the Lupus Foundation of America to see the KNOW LUPUS campaign and also to see how you can take action to spread awareness.

To Someone

Dear friend,

I don't know you, but I feel so many emotions for you in this life-changing moment. I feel sad with you. I know this is not what you expected for your life. This was not part of the plan. This was not the way things were supposed to play out. And yet, here you are. I am sad because I know all of the fear and heaviness you feel. I know how deeply your heart aches. I know the questions that are flooding your mind. I am sad because I know the obstacles and challenges that lay ahead. I am sad because I know that in this moment, it feels like your dreams are crashing down. And I so wish I could take all of this away from you and make it all better.

I don't know you or what your personality is like. But I do know that if you haven't already, one day you will ask, "Why?" It is an honest question. It is also a hard one. And unfortunately, I don't know that there is any answer that can truly satisfy. So even though you will find yourself asking that question time and time again, I want to tell you to not dwell on "Why?" Because if you do, you will find yourself at a dead end. Don't dwell in a dead end. Dwell where there is life. Ask life-giving questions: What now? What do I have to live for? What mark can I still leave in this world?

Today marks the two year anniversary of my lupus diagnosis. Two years ago, when I got off the phone with the doctor who gave me the news, I had no idea the immensity of what was in store. The past two years have been so incredibly hard. But my life has continued. Hardship has not in any way taken the good from my life. If anything, it has helped me to see good in places where others cannot and feel hope in ways I never did before. I feel hope for my future. And I feel hope for you. Yes, in this painful moment, there is hope! I feel hope for you because even though your life will be hard, your life is not over. There are still joys to experience, celebrations to have, and beautiful memories to make. Your life will be hard. That does not mean your life will be bad. Choose to dig deep and see the good.

I feel hope for you because as big as this diagnosis is, there is a God who is bigger than your diagnosis. He is not distant. He is near. He hurts with you. He loves you and His love never runs out. He wants to hold you in His arms. He is good and continues to be good when nothing else in this life seems to be. He gives strength to the weary. He can bring peace in the midst of the biggest storm. He can make beauty out of the chaos. He can bring joy in the midst of the greatest pain. He can bring light to the deepest darkness. Hold onto Him. Hold onto Him when your body hurts too much to move. Hold onto Him when you feel alone. Hold onto Him when it feels like you have nothing left to go on. 

I may never have the opportunity to see your face or learn your name. But I pray for you. I pray that you would be full of courage, peace, joy, and strength. And I pray that when you feel like you have none of these things, that you will have a community to support and encourage you. I pray for your family as they walk with you on this journey, for them to experience strength and encouragement as well. I pray that as lupus dramatically changes your life, that your life would be abundant and full of purpose. And I pray that you wouldn't just be a survivor. I pray that you will be a warrior who is more than a conqueror.

- - - - -

I wrote this for someone. I don't know who they are, but I know they are out there somewhere. The anniversary of my lupus diagnosis is 2 days after my birthday, and this year I have a special lupus birthday wish: I want as many people as possible to share this post so that the person I wrote this for will have the opportunity to read it. Please help my wish to come true by sharing this on your Facebook, Twitter, Pinterest, etc. 

#lupusbirthdaywish