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.