How do I say thank you?

My current med setup, not a household shrine. Promise.

My current med setup, not a household shrine. Promise.

Treatment, week one.

I glance at the chart, pairing capsules and droppers and sprays to their proper doses and conditions. It's a grown-up matching game. 15 drops, twice daily, the 4th row reads. Empty stomach? Check. The droplets roll into my cup. So tiny and clear, they could be mistaken for rain, tears, possibly even sweat. Expensive sweat.

Bacteria is present, partying in my body like it has for years. But my new practitioner says she's hopeful. This time I believe those words. Because I finally am, too.

If treatment yields a body without pain, I would be so grateful. (Many of you have been praying and are currently praying to that end. Thank you for that. Truly.) Can I be honest, though? This body—the one that creaks and swells and tires—is how I've known it since 18. Life has been lived and loved through it. In those years, I've grown up with symptoms always surrounding me. Plenty of mornings, my energy (or spoon supply) was emptied before I could leave my room. But God was constantly near, his presence encircling me in ways I can't perceive. Unfailingly, his spirit would sustain me when I thought it impossible to continue on. 

Joni Eareckson Tada wrote in When God Weeps:

The damp fog of my despair did not dissipate overnight, but I knew beyond a shadow of a doubt I had turned a corner. I was moving in the direction of God. My questions also created a paradox: in the midst of God's absence, I felt his presence. I found him after I let go of what I thought he should be. My despair ended up being my ally because through it, he took hold of me.

I eventually came to know his kindness in my physical suffering. Paradoxes, yes. This is why, without a healed body, I can say I'm grateful right now. It's the Spirit's work, I know. I'm too grumpy and selfish and impatient to produce anything resembling thankfulness. Please remember that.

When coming to Atlanta, I knew nothing of health centers in the area. I started to pray this spring for direction and wisdom on where to seek treatment. The Sunday before Hope Heals Camp, I received prayer for healing from one of our elders. We spoke later that morning, and he said he'd be in touch. Cell service was spotty at camp, but if you held your phone just right, you could load emails on the front patio of my cabin. The message came through on my birthday—the elder connected me with someone who had Lyme disease. She'd seen results through a center up north, where I'm now a patient. By early July, my prayer for direction had been answered.

Next, I needed provision. God has stretched my part-time, hourly pay to cover all kinds of bills and costs, but appointments and remedies from my own check were out of reach. I began to pray for the right resources. I made my needs known and once again, God used his people to answer my prayers. It is through the generosity and faithfulness of my brothers and sisters that I now get to receive treatment. WHAT!?!

Last time I started treatment, I walked away from the church. The isolation I felt made my heart wilt with despair. A few years later and it's the church that is walking with me to wholeness. They don't know how they've already been integral to my healing these last 9 months. 

"We want to see you well. Start as soon as you can."

I've never had this kind of support. A billion thank you's could not suffice. 

These are photos from my bedridden days over the years. All pre-Georgia. Don't be fooled by the colors and twinkling lights—grief, fear, and confusion were bundled inside. I thought I was Erika the Sick Girl and nothing more. Seems like another life.

A disassembling brain.

When I was a kid in the late 90's, "The Brain" to me was the nickname of a smart, grey sweater-wearing bear from Arthur. Remember that TV series?

Fast forward and the brain I now know is housed under my skull, not in Elwood City. Lately, it seems that organ is in hiding. Stress is usually the trigger—even good stress is enough for the onset of a flare up. So, cognitive functions lag again. This affects my verbal fluency, short-term memory, and ability to process information or problem-solve. It's like thinking through black carbon.

I hold no background in neurology but research tells me what Lyme can do to the brain. Damage is possible and decline, in some ways, has already come.

Several times a week for the last several weeks, I've prepared to write. I'd sit down, open a blank page like usual, ready to share about spring and summer happenings. Over and over again I'd try to form sentences around these recent events but then, there it would go—my brain running off somewhere unseen, bringing the writing process to a reluctant end. I'd close the laptop and then my eyes, crying out to God for his comfort and truth. 

Loss rearranges us. Once provision, health, or people slip away, there's finally an admission of what we've taken for granted. Loss upends control, jolts priorities into place, and reveals the value of what's been near us all along. I surely didn't appreciate my brain until it began disassembling. Perhaps this sounds familiar.

Yes, there's neuroplasticity and treatment and if those don't work, there's also the promise of a redeemed body to come. But if I'm honest, cognitive impairment in real-time feels alarming. My friends call certain experiences unforgettable and yet, I cannot will my brain into remembering along with them. It's beyond my control. As memories lose vibrancy and words fall off their proper shelves, I'm tempted to hide my weakness. If I can't wow others, I immediately self-protect. Seven years into illness and I wonder, can I trust my Creator has good purposed for me? I've been afraid to let go of my pride and control—prizing fond memories, intellect, and others' perceptions over my Jesus. I still think I know what's best. 

Without God, these losses—memory or the like—would seem like an awful joke. But I'm not one without him or without hope. Instead, I have the Spirit of God living in me, untying me from fear and redirecting my affections to what matters. My brain might labor against bacteria, but guess what? This hollowing out creates more room for my Savior to step in and meet me. More awareness of him, more prayers to him, more love for him. When I experience Jesus and his unfailing love, I know I'm not empty-handed. And that, to me, is the true healing I need.

This post is dedicated to my friend Abby: Abs, thanks for believing me when I say it's been hard and for pushing me to write anyway. You help me call to mind God's faithfulness. In all my Dory moments, you never judge. Thank you.

Good, beautiful news.

When treatment began last December, my family and I kept our eyes open, hunting for signs of improvement to share with praying friends. We were sure positive results would unfold—my body just needed to respond! But a few months into treatment revealed this was no quick fix. I was broken and my hope threadbare.

Winter, spring, and summer were arduous and humbling; all seasons spent grieving, excavating shame, and building a healthier framework from which I now live. By the grace of God, fall has brought a shift in perspective and rhythm. I'm suddenly doing things (like applying for jobs!) I hoped for but didn't expect. 

On my résumé, potential recruiters will notice an employment gap eleven months wide. An 8.5" x 11" page doesn't offer space to tell the stories squished between the lines. But if it did, mine would tell of our merciful God and His saving help.

David articulates this deliverance in Psalm 40 when he writes:

I waited patiently for the Lord;
he inclined to me and heard my cry.
He drew me up from the pit of destruction,
out of the miry bog,
and set my feet upon a rock,
making my steps secure.
He put a new song in my mouth,
a song of praise to our God.

Many will see and fear,
and put their trust in the Lord. 
Psalm 40:1-3

Early on, there was unmistakable loss as illness often brings. But grief—that squirmy topic we like to keep hushed—helped nurse my fragile soul. Grief made room for me to experience a 2 Corinthians 1 kind of comfort. And because of this? I now desire to enter into suffering with others, offering love and compassion as the Father does for me. 

Where I once tasted the bitterness of my diagnosis, I'm focused now on drinking in the Lord's endless kindness. Feasting on the truth of His Word and not my pity or suffering is what I'm after. Like Peter urged believers in a time of heightened trials, I want to consistently choose Christ for my nourishment. My sustenance is Him, not pills or diets.

I used to routinely don fear. Pinned in bed with questions and doubts taunting me, I prayed for liberation night after night. Through God's faithful intervening, I was gifted with counseling and resources to help me sort through these many anxieties. As my emotions and thoughts have grown healthier, I've been able to set up practical routines which help ground me. The enemy cannot use fear to keep me from missions, family, education, jobs, or even rejoicing in suffering. I have purpose and I have hope.

This gap, pit, or whatever you name it, has not been a waste.

As I stepped out of the counseling office for my last session, I thought of the United Pursuit lyric which asks, "Will I learn to see beauty in the making?" The door shut behind me. My counselor's words of blessing echoed in my mind... and then, I saw it dimly. I saw beauty. It's been here, along these last eleven months, forming underground and tethering itself to healthy roots.

I'm a different person than when this all began. Jesus, a beautiful Savior, making broken people alive again. What good news, friends. Really good news!

So, as I venture forward, I ask for your prayers. This month, I'll be traveling to Virginia for my in-person appointment. I'm not sure what the doctor will say, but this I know: I'm not waiting around for healing. I'm waiting on the Lord. I must respond to whatever He speaks and wherever He leads.

In suffering, in health, in anything here on earth—all my praise goes to Him.

There's no cure. I see hope.

A few days ago, my dad and I discussed treatment plans and the decisions surrounding it. These conversations are unpleasant for me. I'm weary of reevaluating my health status so often. I don't want to be reminded of how painful these last few months (or years, even) have been. Yet to ignore this topic would be foolish.

Can we still afford treatment?
How much longer will you give it a try?
Is this even working?

When I resigned from my job and began this particular protocol in December, I imagined by mid-2016, I would see progress. I marked out a timeline for myself—fairly certain by the end of June I would be healthier. Just in time for my birthday.

Early this morning, I began to look at this situation rather plainly. It's necessary to grab views detached from my emotions. I can't deny the facts about this disease. It is what it is. Regardless of what my body or a medical report reveals, I pray I will cling to God's truth.

The facts say there is no cure for chronic Lyme Disease. And once treated, over 63% of people could still face debilitating symptoms. No one can promise me I will feel better on this side of heaven. Not by June 2016, and not in 20 years.

I've heard this before, but I guess I was hoping for a different story.

This road could be a lot longer than I ever expected. I could still be asked, "are you feeling better yet?" in five years. Or maybe by then, the question will be stale and hardly a topic for discussion.

In my efforts to rush ahead, I put terms and conditions before God. 

Lord, if this treatment works, I could focus on You more.
Lord, once I feel better, I will serve You in many ways. 
Lord, it would be amazing to be miraculously healed.
Then wouldn't others wonder at Your goodness?

Do your prayers ever sound like mine? As humans, we love to have the ideals portioned out like they're baking ingredients. We've got recipes in mind and measurements memorized. Our prayers often uncover whether we've put God to a timer, expecting Him to whip up a treat for us when we see fit.

June is approaching. My self-made timer wants to count down the days.

But this is what I know. The abundance of life (John 10:10) is not going to be found in regaining my health. Or the community I once had. Or money in my bank account. Or living on my own again. Or traveling overseas. If true life could be found in any of those ideals, I would be left out of something God has promised, making Him a liar. And He cannot lie.

David says in Psalm 25:15,

"My eyes are ever toward the Lord, for he will pluck my feet out of the net."

Turning my vision away from myself and off the calendar, God helps me see differently. He reminds me of the eternal life I have now (John 17:3) and of the future glory to come (Romans 8:18). He leads me into truth—guiding me through life's interruptions with no fear in His step.

I don't have to count down the days until a desired date, because I can start counting up right now. I count up God's goodness. I marvel at how He can accomplish much in this frail body of mine. His Spirit does the work, renewing me (2 Corinthians 4:16) and giving me the doses of daily strength I need. Unlike my bottles of treatment, He will never run out.

There doesn't need to be a healing visible to the eyes for me to prove or believe He is good. Hope is alive inside me despite the pain and the losses—how incredible is that? How incredible is HE?

The facts about Lyme Disease are real. I have studied them, and I know them. But I also know a truth which sets me free from those fearful facts.

When I look to the the cross of Christ, I see that my dream life doesn't begin once circumstances align to my liking. He is eternal life, and I know Him now.

Lord, help me keep focused on You today.
I will seek after You. I will serve You. I will see that You are good.

Seeing differently

Meet my invisible illness.

Blood Tests & Bed Rest

Everyone, meet my invisible illness.
Its name is Lyme disease.

I can tell you what to call it now, but I couldn't for over four years.

Naming illnesses are not as straightforward as picking out baby names. They are also not as fun. And unlike children, illnesses could last years without having a name carved out for them. Some people never receive a diagnosis. Some would rather not know.

I now know.

Today, I want to share with you a peek into my health timeline followed by a FAQ.

I feel tender writing facts and details about physical health as it opens up a world of opinions, thoughts, and suggestions. I kindly ask you to refrain from giving advice in my health situation. Please know my hope here is not to gather sympathy or pity. In sharing my experience, I simply want to provide support to anyone struggling and clarity to those who are curious. With that being said, I always LOVE hearing your stories and questions—so please reach out!

If you don't understand everything or don't know how to relate, that's okay! Illnesses can be an awkward subject to approach, and none of us like to see our friends suffering. It's okay to admit that. Your prayers and encouragement are always appreciated.

Thank you for your love and presence.

As a kid,

I was healthy, athletic, and hardly knew what a cold was. Both my parents promoted a wholesome diet and lifestyle while growing up. The memories I have from my childhood are vibrant and carefree, threaded together with bright hues and ballet ribbons.

When I was 10 or 11, I was diagnosed with hypothyroidism (underactive thyroid). Nothing changed except my blood was often tested and I took medication—routines which still continue.

During a geology class in 2010,

I looked at my hands and thought I'd turned into a vampire from Twilight. And I don't even believe in them! My extremities were stiff, icy, and had turned a shimmering gray / blue / white. Later it was discovered I had Raynaud's phenomenon (reduced blood flow), occurring secondary to the hypothyroidism. 

That year, the thyroid symptoms began to catch up with me, and it was harder to have the stamina to dance 30 hours a week. None of this was life-shattering, just something I needed to adjust to.

The following year,

I stopped dancing due to injuries and could no longer afford college. Life took a surprising turn, and in April 2011, I moved to Hawaii and joined Youth With A Mission. My time with this missions organization was pivotal in my walk with the Lord. He captivated my heart and placed me on a firm foundation. This is worth mentioning, as I believe God was preparing me for the challenging years ahead.

In July, my ministry team took a detour to a farm in Connecticut before heading to Mozambique for three months. This is where Lyme took a liking to me. And I had no idea.

Once in Africa, I was constantly exhausted, dehydrated, and lacking nutrients. I didn't take care of myself. One night while on a trip in the bush, I got sick with a virus and my stomach was angry for weeks. There were flu-like symptoms. I had worms in my feet and stomach.

Yes, it's all as gross as it sounds.

The most jolting moment was on an August morning, when I woke up in a fog. I had lost memory of Bible verses and what we'd done that week. My sharp memory was something I'd taken pride in, and it became dull.

That fall, I returned to the states and visited doctors. Despite my memory loss, stomach troubles, increased fatigue, and weight gain, "nothing was wrong." I thought I could just rest it off. I blamed it on the travels and my thyroid.

From 2012-2014,

I was all over the map geographically as my health stayed without answers. Because of my health's unreliability, plans were constantly uprooted.

I returned to missions twice. I was on bedrest. I tried counseling. I tried diets. I wrote two resignation letters to jobs I truly loved. I made friends and lost friends. I moved. I experienced heartbreak. I began writing lots. And I cried out to God. 

Appointments felt useless.

Symptoms piled up. Blood test results were negative. They considered this as fibromyalgia, chronic fatigue, or depression. Doctors suggested antidepressants to help with my discouragement and walked me out the door. We were all baffled. 

Something was obviously not right physically, but I couldn't force my body to prove it. It's not uncommon to be told, "but you don't look sick!" or "you look so good no one would ever know!" But I wanted people to know. I wanted to feel believed, seen, and affirmed. Insecurities soared, and I believed many wrong things regarding my identity. 

Late 2014, after a series of unforgettable doctor visits and many times of prayer, I began to research for myself. I came across Tired of Lyme and also watched Christa Vanderham's story. It was surprising to find so many symptoms aligning, but I put it to the side.

Hope Heals

While visiting home in Jan. 2015,

I woke up with a distinct memory. There had been a rash on my chest. Where was I?! And when? It came flooding back to me. I acquired a rash while staying on the Connecticut farm in 2011.

If you're not familiar, Lyme disease is a bacterial infection transmitted through a tick bite. In some cases, the bite is characterized by a bullseye rash. It was named after a town with children afflicted by it in Lyme, Connecticut. Though I wasn't about to diagnose myself, the possible connections seemed interesting. 

I'd been tested for it before, and received a negative result. There are many people who have experienced the same, as the typical diagnostic tests for Lyme can be insensitive. I wasn't sure what to do with this information, but I continued to cry out to God for His leading.

Months later, my prayers were clearly answered. I got connected with two individuals who had Lyme disease and was referred to doctors who specialized in this.

For the first time, these doctors listened to my every word. They wanted to know the symptoms, the history, and everything in between. Both emphasized that something was very wrong—words I'd not heard in an appointment before!

In December, after months of the symptoms worsening and affecting my ability to work, I resigned. I began receiving treatment the same week. The protocol I receive is not to treat chronic Lyme disease but to treat me, as a whole person. This homeopathic approach has moved mountains for a dear friend's recovery, and I've been believing the same for me.

Treatment Protocol


So, what happens next?

That's a great question. And the answer? I don't know! 
I've been on treatment for four months and have not seen notable improvements just yet. This is something which takes much patience, commitment, and trust.

Being out of work and living at home with my family has been a stretch. I enjoy accomplishing tasks, traveling the world, being able to provide for myself, and actively serving others. This time of rest and recovery has forced me to slow down and get a good look at where my hope is found.

Most days, I do feel sick. I wake up in pain, and I go to bed in pain.
But most days, this no longer controls me, ruins me, or limits me.

I believe in a good God. I believe in a God who heals, protects, and redeems. When I feel hurt or misunderstood because of this illness, He cares well for my heart. And even when I sin through anger, jealousy, slander, or much more, He lavishes forgiveness and shows me a better way.

All I want now and next is to love God and others well, no longer letting what the enemy meant for evil stealing a second of this life I've been given.

What are your symptoms?

It's a long list! Don't let it overwhelm you.
I've listed for you symptoms I've experienced, but I don't feel them all at once. 
My main complaints now would be cognitive troubles, fatigue, and physical pain.

  • headaches
  • memory loss
  • forgetfulness
  • brain fog
  • dizziness
  • slurring of speech
  • inability to recall words
  • extreme fatigue
  • trouble sleeping
  • heart palpitations
  • moody
  • joint pain
  • muscle pain
  • severe neck stiffness
  • enlarged knuckles
  • arm numbing
  • hair loss
  • puffy eyes
  • eye floaters
  • blurry vision
  • sensitivity to light
  • rashes
  • depression
  • weight fluctuation
  • poor circulation
  • shortness of breath
  • digestive problems

My friend / family member has an invisible illness.
How can I support them?

Each individual is different. Their symptoms, experiences, preferences, love languages, communication styles, limitations, and needs will vary. Keep this in mind.

Chances are, your friend or family member may feel like a burden. They might feel pressure to conceal their struggles, and you might feel pressured to have the perfect response. Depending on the person or type and length of the illness, a chasm could be created in your relationship if expectations are not lovingly communicated.

Dr. Brené Brown has a brilliant 3-minute talk on empathy I highly recommend listening to. It's so meaningful when you enter with this person in their pain. Yes, even when you don't understand. It's a vulnerable choice, but you'll be able to connect deeper.

There are many creative ways to show them you care. 
Here are a few simple ways to start:

  • pray for them
  • tell them you love them
  • validate their pain
  • remind them they're seen
  • let them know they're not alone
  • call, visit, and spend time with them
  • share truth with them
  • give gift cards, offer to make meals, watch their kids