My lupus journey..

May was lupus awareness month.

I realize this is now June, but I want to share a little of my autoimmune journey and what God has shown me along the way.

I won’t give you all the sordid details of the journey to diagnosis.

Just know that I have been diagnosed with lupus and antisyntethase syndrome (A.S.S. for short. Yes. I think this is funny). To paraphrase,  lupus attacks my organs whenever it pleases. A.S.S.  attacks my muscles as it pleases. Both lupus and A.S.S. love to play in my lungs.

Before being diagnosed, I was fulfilling a long-term desire to complete law school. It was during finals of my 2L year when I was first diagnosed with lupus. I tried to push through anyway.

For me, this was a TERRIBLE idea. Several ER visits later, I realized I could not maintain legal studies.

I went from cramming for finals to being homebound for the next three years.

I looked okay on the outside. But several of my organs were having a party and creating chaos. My lungs? Sheesh. Breathing is so underrated.

It was during this time that I learned to fail well. To say goodbye to my lawyering dreams, to say goodbye to returning to my previous work with the special needs community. To accept the reality that I could not be relied upon to complete obligations.

It was during this season of being homebound, that I learned to lean deeply into prayer.

That first summer, after being mostly stuck in bed for what seemed like an eternity, I kept asking God, “What is happening here? I thought I was going to be a voice for those who could not advocate for themselves. That I would love my neighbor by standing up for them when they could not.”

I received no answer.

I slept a lot.

When I was awake, I prayed. Truth was, praying was the only thing I had strength to do.

 I prayed for understanding. I slept.   I prayed for clarity. I slept.  I prayed for my church family. I slept. I prayed for our neighbors. I slept.  I prayed for my children. I slept.

 I began taking prayer requests from others. I prayed. I slept.

Mathew 11:28-30
²⁸ “Come to me, all you who are weary and burdened, and I will give you rest. ²⁹ Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. ³⁰ For my yoke is easy and my burden is light.”

I would watch Hot Stuff work several jobs and donate plasma to offset my medical expenses, while I prayed and slept.

I felt utterly useless. I felt guilty.  I was like “God, you have GOT to be kidding me.”

 When I apologized to Hot Stuff for not being to contribute to our household in any tangible way, he would just grin and say “Sweetie, you would do the same for me.”

He was right. I would. But I still felt bad for him. I wanted to ease his burden and all I could do was pray. I know there is value in prayer, but sometimes it is easy to forget that value.

I wanted to be of tangible value. Value that could be seen. God had other plans. I needed to learn the value in just being. The value in praying silently.

I had to learn to receive Tracey’s giving sacrifices of time and energy, gracefully. To be honest, I still struggle with this.

This homebound, stuck-in-bed season, was a huge crash course on learning to be dependent on others.

I began thinking about my clients when I worked in a day-hab for adults and children with developmental and emotional delays. Clients who were sometimes completely paralyzed, but woul have a sense of humor when you changed their diaper. Clients who had every reason to be angry, depressed, and constantly anxious, but who had developed a quiet resilience and love of small things.

Maybe I had been gifted those years with these precious souls to prepare me for lupus life now.

After the end of the first 6 months of prayer, I realized my life ambitions had shifted from being an immigration lawyer to simply having the graceful humility and ability to listen and communicate with my heart. My previous dayhab clients, were my new heroes.

I was led to Galatians 5:22-23.

 22 But the fruit of the Spirit is love, joy, peace, forbearance, kindness, goodness, faithfulness, 23 gentleness and self-control. Against such things there is no law.

I spent the next three years, dwelling on the freedom this scripture brings.

 I didn’t have to be physically fit. I didn’t have to contribute to my household. I didn’t have to be socially active.

 I may desire these things…but I could still love and love deeply.

 I could find joy in small things.

 I was getting a CRASH COURSE in forbearance…as was Hot Stuff.

I could spend my life turning to God to cultivate kindness, goodness and faithfulness within my heart.

 I could learn to be gentle on myself as well as others.

Everyone knows I could benefit from cultivating self-control. Yeah. I still need lots of help from God on this one. I’m a work in progress😊

As I became slowly healthier, I began writing. All. The. Time.

I started taking my writing more seriously.  I began some long-term writing projects. Works that are still in process.

Somewhere along the line, my doctors got me sorted with a nice cocktail of medications and God graced me with a little autoimmune reprieve.

 I don’t know how long this little auto-immune reprieve will last. I still have a team of specialists I see regularly. I still have a ridiculous amount of lab work done on an ongoing basis. I can still feel like I’m starting a cold on Thursday and have bronchitis or pneumonia on Saturday. I still get easily fatigued. I never know what my energy level will be.

But I will savor this season while I can.

I wish I could say my prayer life is just as constant, deep and active as it was when I was homebound. But it’s just different. I think that is okay.

I am grateful for these “bonus years” where I get to teach, and write, and actively engage with family and friends.

I hope I never lose sight of the tings God has shown me.