Swan Song

This is my last post here. (It feels so surreal for me!) This blog has been an amazing journey for me, and now I'm ready to embark on some new adventures. Before I walk away from A Room with Books and Music, I have a few thoughts I want to leave with you:

Lupus (or any other life-changing diagnosis) is not the end of your life. It is the start of a different life. Live every moment you have left on this earth to the fullest. Whether they be few or many, make the most of every one.

Hard does not mean bad. A lot of beauty is forged in the crucible of hard. Find the beauty in the midst of hard days.

There are a lot of people that treat cynicism like a virtue. But cynicism is the easy path. Choosing to see good, potential, and possibilities takes a lot more creativity than cynicism. This is not ignorance. This is courageous living.

Drown out fear with the words of God and glimpses of who He is. (Insert link) He is peace in the midst of chaos, light in the midst of darkness, and strength in the midst of weakness. 

And finally,
to all of the people who have been part of this wonderful journey, 

to the people who took the time to read my blog, 

to the people who have encouraged me and told me what my words have meant to them, 

to the people who have made my voice louder by sharing my posts with others, 

and to the people who have lifted me up in their prayers...

Thank you.

Married to Someone with Lupus

I have lupus. My husband does not. Lupus affects both of us.

 I've mentioned my husband, Daniel, in my blog posts before. He has been an amazing pillar of strength for me. So for Lupus Awareness Month–and my penultimate A Room With Books and Music blog post—I thought I'd let him share his perspective on life with lupus.

How did you feel when you found out your wife has lupus?

At the time, as hard as it was hard to hear it, it was a relief to know that she wasn't imminently dying. We knew there would still be uncertainty as we moved forward from the diagnosis, but it was a trememndous sense of relief just to know what we were dealing with. It's hard to put into words how frightened and helpless we felt before we knew why she was so sick.

How does being married with someone with lupus affect your daily life?

It makes the impact of my decisions a lot more real. If I watch a movie instead of doing chores, it can derail her for a week. I have to be more intentional about when I work and when I relax, so that we can both really relax. It also means I can't make as many time commitments as I used to. Even if Esther isn't involved in the activity, it can be hard on her if I'm not around to help when she needs it, especially if she's having a flare up.

What has been your biggest challenge being married to someone with lupus?

I work full time and I'm pursuing a Masters degree part time. So balancing time between work, school, and home is definitely a challenge. I've had to really slow down the pace of my studies. And social activities with our friends are really kind of a luxury. We've both had a history of being over-involved with things, so we both had to learn how to dial it way down and help Esther conserve her "spoons."

What has helped you get through hard times?

Friends. Our faith community. People who have been there to encourage us and bring food to us and pray for us when we haven't even had the heart or strength to pray for ourselves anymore. I thank God for His people that He's surrounded us with. Our church family, my classmates and teachers, our coworkers, all of them have been amazing. I don't know how we would have made it through those first several months if it wasn't for them and their understanding.

I'm Not Used to This

The week that the doctor called to tell me I have lupus, I went back to work. Even though I could hardly move and barely had enough strength to stand, I refused to stop teaching. If I could get my hands over my head in the morning, I was going to work. (Looking back, the fact that this was my yard stick for whether or not I should go to work should have been reason enough to stay home.) I remember the day that I announced to my classes that I had lupus. Since the start of the semester, they had watched my hair fall out, my weight drop by over 20 pounds, and my body become more and more frail. They were so attentive in all the classes I had taught that year. I thought it was because I was a great teacher. But now I think it's because they were watching to make sure I didn't collapse in front of them. So when I finally had a diagnosis, I knew it would be better to tell them than to try to hide it. 

At the start of every class that day, I made the announcement. "I have lupus." The school where I was teaching at the time was a Bible college, a place where all the students were training to go into ministry. So I decided that I wanted to be an example for them. I remember telling them about how ministry is hard. Every single one of them will face challenges and obstacles. I spoke of character and endurance. I spoke of showing up in the hard times because people will need them to be there. I spoke of not giving up. And then I prayed for them, that God would strengthen their characters so they would be able to endure whatever their future may hold. And then I jumped right into my lecture.

I remember one class in particular that refused to let me leave it at that. A hand went up. "Um, can we pray for YOU?"  I remember them surrounding me to pray for me. It felt strange. I was so used to giving and pouring into them. I wasn't prepared for them to pour into me so beautifully. As much as I tried to hold it together and stay dignified, I cried as they prayed. When you pour yourself out for people, there are some that don't care. But there are also those who pour right back. I was loved. And those students were determined to make sure that I knew it.

Fast forward to today...

My life looks very different from how it looked over three and a half years ago when the doctor called me. But who I am hasn't changed. In the few years that I've had lupus, I have refused to stop investing in people. Whether it be at work, in ministry, in relationships, or even on my blog, I give what I can to help others. This month, my friend, Liz, decided that it was time that I was on the receiving end. During the month of May (Lupus Awareness Month), she's doing a fundraiser to help me with my medical expenses (an ongoing burden for me and my husband). She works for Keep Collective, a company that makes customizable jewelry. So she decided that she wanted to design a lupus awareness bracelet, sell as much of them as she can, and give me the commissions. When she told me she wanted to do this for me, I was shocked / surprised / humbled / slightly embarrassed / grateful / overwhelmed.  Like how I felt surrounded by students praying for me three and a half years ago, it feels strange. Even though I have found myself on the receiving end more now than before I had lupus, I'm still not used to it. And I've never been on the receiving end of something like this! 

I feel so loved.

It's really hard for me to ask for help. This is one of those advice-for-people-with-lupus things that I really struggle with. I abhor the thought of being a burden or inconveniencing anyone. What's more, I hate the thought of not being strong. Maybe you're like me. I get it. But you know what? Receiving help does not mean you are not strong. We are meant to help each other. And when someone who cares about you offers to do something for you, that is not a time to feel pitiful. That is a time to remember that you are not alone and you are loved. What a wonderful thing!

TBT

Stuff I could do before I had lupus:

Get out of bed without waiting for my joints to loosen up.

Skip breakfast.

Eat garlic AND walk the next morning.

Play with my long, flowing hair without worrying about it falling out.

Open a bottle of water by myself.

Work hard late into the night, sleep a little, do it again the next day.

Practice the piano all day like it's no big deal.

Play the cello (for even a few minutes) without experiencing intense pain.

Write and draw for hours without having to get cortisone shots in my hands afterwards.

Move painlessly after a day out in the sun.

Remember everything.

Hugs for everyone!

Stuff I took for granted before I had lupus:

The joy of being able to get out of bed on my own.
The strength to do a job that I love.
Science and easy access to medicine.
So many people in my life who shower me with love, prayer, and encouragement.
A husband that stands by my side through the good days and the bad.
 God's mercy truly is new every morning,
and He truly does strengthen me with joy.
Hope.
Music.
Good days.
Peace in the midst of the not so good days.
Every day.

Pictures of Lupus, Opus 7

I know that I've already posted a pic of my meds in this series, but the task of organizing these pills is such a recurrent drudgery that I thought it was worth looking at again from a different angle. I take 16-19 pills a day to manage lupus and its symptoms. But doing this mundane task well is so important to helping me live life to the fullest, invest into my students energetically, and make music passionately. There is much to thank God for in the midst of the drudgery!

Advocate

For the past few years, as I have tried to find my way along this journey of chronic illness, there is a word I have fallen in love with: advocate. Both a verb and a noun.

As I deal with the struggles of living with lupus, including dealing with insurance companies and hospital billing departments, amazing doctors and some not quite so amazing...

I have become passionate about being an advocate for others. Those who live with chronic illnesses need advocates so they can get the care they need. But if they are able, they shouldn't leave the job of advocacy completely in the hands of other people. They should be advocates for themselves.

I need to be my biggest advocate.

I need to...

- Be as informed about lupus as I possibly can...And this includes finding credible resources and not believing everything I read on the Internet.

- Tell my doctors everything they need to know—such as any new symptoms I'm experiencing—so they can provide the appropriate healthcare.

- Deal with difficult people who are part of the healthcare system that may or may not care about my situation. (I've even had some that have refused to believe I have lupus!)

Of course, we will still need the help of other people. We can't do it all on our own. But don't forget that your voice is important, too!

Even Good Seasons End

When I started blogging a few years ago, I was just looking for a creative outlet to process a life-changing lupus diagnosis. I had no idea that so many people would read it and find hope in my words. Writing this blog has been an amazing adventure. I've poured out my heart to people who are wading the waters of chronic illness and to people who aren't. I have written about my low moments and my victorious ones. I've written during times of strength and times of vulnerability. 

Last year, I described my writing process on social media:

"Crafting. Typing. Retyping. Editing again and again. And again. Poring over every word. Carefully considering the gravity of every sentence."

I have loved going through this intense, often intimidating process over and over again. But it's time to bring this season to a close and for a new season can begin. So I will be writing a few more pieces in A Room With Books And Music, and then I will shut the door and walk away. I don't feel like my blogging and writing days are completely over, but I'm saying goodbye to this place that has been so special to me these past few years. I don't really know all the details for what is next, but this step is something I feel like God has been putting on my heart for some time. Over the years, I have learned that He never asks us to walk away from something to give us nothing. 

And "nothing" is definitely not a good description for the months that lay ahead. I'm still going to play the piano and teach. My husband and I are FINALLY going to go on our first ministry trip to Japan later this year. And I will be pouring my creative energy into the Japan Prayer Circle, something we have been dreaming about starting for years. It would seem that with all of the exciting things happening in my life, all of the answered prayers, all of the new adventures, this would be a great time to ramp up my blog and write a whole lot more. But I feel like God is calling me to a season when being a blogger will not be part of my identity. A time when I can step into the dreams for which I've been waiting for so long and give them the best of my time and energy. A time when I can just focus on being my Father's daughter. So I'm taking this exciting and terrifying step of faith and trusting God with my future.

- - - - -
Now, I'm not shutting the door quite yet as I still have a few pieces to share before I leave. I also want to hear from you: Do you have any questions or anything you would like me to share before this season ends?

Pictures of Lupus, Opus 6

I got 2 cortisone injections in my hand today...again. It's easy to get frustrated when symptoms of lupus persist, but there are far better things—wonderfully beautiful things—to set my mind on. "We do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. For this light momentary affliction is preparing us for an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen." {2 Corinthians 4:16-18}

Pictures of Lupus, Opus 5

Lupus causes my joints to swell and my fingers to get nodules. Not good for a pianist! I already had a custom splint for my temperamental finger, but when I am extra swollen, it doesn't fit. So I got a new one made last week. I love that they let me pick a color so my splint could be as fabulous as a splint could be.

Ten Looks at Christ

I recently started a new journey in my walk with God. I decided to get a Give Me Jesus journal from Life Lived Beautifully. (You can check it out the one I got here. There is also a men's/unisex version here.) The journal is designed to bring structure to your "quiet time" with God. I'm a very organized person, but when I spend time alone with God, I feel scattered. As much as I want to give God my focus, it is a struggle. So when I saw this journal, I was on board. The first few pages has introspective questions to fill out to and gives you some guidance for how to go about having a daily time with God. I've been a Christian since I was little and even went to Bible college, so I thought that filling out these questions would be a piece of cake. But they made me really evaluate where I am - where I truly am in my relationship with God. There was one page in particular that really struck me...

Based on a a saying by Robert McCheyne ("For every look at self, take ten looks at Christ!), this particular page gave a challenge:

"We must redirect our gaze to Jesus throughout the day. Take time to write down your 'ten looks' you will take at Jesus." 

When I read these words, I felt my breath stop for a moment. Write down the ten looks I will take at Jesus? I know the things He said, things He did, and how the Bible says to live. But do I know Jesus well enough that I can articulate ten things about Him that I can look at? Off the top of my head, I drew a blank. I was overwhelmed and at a loss. So I sat for a while in the realization that after so many years of living for God, I knew much about what He had done for me, but I did not know as much about HIM as I had thought. I began to flip through my Bible and look at passages that I had highlighted, searching for glimpses of Jesus...

1.  "...Then he rose and rebuked the winds and the sea, and there was a great calm...even the winds and the sea obey him..." (Matthew 8:26-27)

2. "...But take heart; I have overcome the world." (John 16:33)

3. "And the Word became flesh and dwelt among us, and we have seen his glory, glory as the only son from the Father, full of grace and truth." (John 1:14)

4. "But God shows his love for us in that while we were still sinners, Christ died for us." (Romans 5:8)

5. "He is the image of the invisible God..." (Colossians 1:15)

6. "And he is before all things, and in him all things hold together." (Colossians1:17)

7. "If then you have been raised with Christ, seek the things that are above, where Christ is, seated at the right hand of God." (Colossians 3:1)

8. "He is the radiance of the glory of God and the exact imprint of his nature, and he upholds the universe by the word of his power." (Hebrews 1:3)

9. "the founder and perfecter of our faith" (Hebrews 12:2)

10. Great and amazing are your deeds, O Lord God the Almighty! Just and true are your ways, O King of the nations!...You alone are holy..." (Revelation 15:3-4)

I keep this journal on my nightstand open to this page (with my phone far away, charging in the living room). So in the morning when my alarm clock goes off, before I have had time to dwell on the pain and stiffness that lupus brought my body through the night, before I start counting the items on my to-do list, and before social media has flooded my mind with so many useless and dramatic things, I grab this journal and take ten looks at Christ.

Pictures of Lupus, Op. 4

Sometimes I wear running shoes to work because I don't want the pain in my feet to distract me from what I need to accomplish that day. I'm not going to let lupus stop me from living my life!

-----

You can see more pictures of lupus here, here, and here.

Pictures of Lupus, Op. 3

Living with lupus means an abundance of prescription meds, supplements, and medicated creams. It is time consuming and expensive.

Pictures of Lupus, Op. 2

When you live with a chronic illness like lupus, pain is a constant battle. Finding ways to reduce that pain isn't always about comfort. It's about being able to function on a daily basis. So if something can help minimize that pain—and if it's legal, safe, affordable, and won't negatively react with my meds—I'm all for it. Bonus points for each thing that doesn't come in the form of pills or injections. For me, getting an adjustment from the chiropractor is one of those things. It's not that going to the chiropractor treats lupus, but at least it helps lessen the amount of pain I have to carry.

2016 Reading Challenge

I'm doing the Modern Mrs. Darcy 2016 Reading Challenge. The idea is to read 12 books in 12 different categories in 12 months. Here are the categories and my picks for each:

_ a book published this year

(I haven't picked this one out yet because the year is just getting started.)

_ a book you can finish in a day

Very Good Lives: The Fringe Benefits of Failure and the Importance of Imagination, by J.K. Rowling

_ a book you've been meaning to read

The Romantic Generation, by Charles Rosen

_ a book recommended to you by your local librarian or bookseller

Moonwalking with Einstein: The Art and Science of Remembering Everything, by Joshua Foer

_ a book you should have read in school

Anne Frank: The Diary of a Young Girl

_ a book chosen for you by your spouse, partner, sibling, child, or BFF

The Princess and the Goblin, by George MacDonald

_ a book published before you were born

The Name of the Rose, by Umberto Eco

_ a book that was banned at some point 

Where the Sidewalk Ends, by Shel Silverstein 

+

Harriet the Spy, by Louise Fitzhugh

_ a book you previously abandoned

Spiritual Writings, by Soren Kierkegaard 

_ a book you own but have never read

Kant and the Platypus: Essays on Language and Cognition, Umberto Eco (This is also a book that intimidates me.)

_ a book that intimidates you 

Julliard: A History, Andrea Olmsted (This is also a book that I own but have never read.)

_ a book you've read at least once

Pride and Prejudice, by Jane Austen

What books are on your reading list this year?

Pictures of Lupus, Op. 1

This is the start of a new series called, "Pictures of Lupus." It's an attempt to give insight to the question, "What is it like to have lupus?"

I took this pic when I was getting my first labs of the year done today. Every 3 months, I have to have labs done to monitor my health and to make sure I don't have drug toxicity from the medications I take.