sweetness in the sour - lyme disease diagnosis

For those of you who have been praying for my health for so long (thank you!), here's an update. We're coming up on four years since my cluster headaches began and are somewhere in the middle of my eighth year with acute migraines, but I have never been so aware of the faithfulness of God and His power to sustain and keep a girl together. Yesterday, I tested positive for Lyme Disease; a disease which, YES (!! happy dance !!), can be treated. The doctor who has stuck with us for the last 19 years believes this is the answer to most of my pain.

Over the years, we've seen doctors all over the country and and have thought a lot of different diagnoses and treatments were "the answer." Of course, this one may fall through as well, but it feels so good to hope, you know?

Last night, after my mom started talking with friends who have fought their own cases of Lyme, we discovered that just one month of antibiotics would probably not get rid of my headaches. Once symptoms become neurological, and if you've had the disease for a long time, it may take two years before they go away. Those 'two years' began to feel like an eternity as another cycle of cluster headache episodes kicked in around 4:30 yesterday afternoon. The idea of knowing I'd keep experiencing that kind of pain was so overwhelming, I started crying when a waiter asked how I was doing. I'm fine.

This morning, I woke up to the words of Psalm 125: "Those who trust in the LORD are like Mount Zion, which cannot be moved, but abides forever." Who do I trust? What do I long for? Where is my hope? In doctors, in the dream of a pain-free life, in myself? As long as my trust is all over the place rather than in God alone, I'll not only move, but experience has shown that I'll completely fall apart.

"I don't know when this season of pain will be over. Maybe, in God's grace and wisdom, He'll say, 'Enough!' and banish the pain within the hour. Or maybe He'll say, 'Enough!' allowing me to step out of this long-disabled, deteriorating temporary housing into my 'building from God, an eternal house in heaven, not built by human hands' (2 Cor. 5:1).

"In the meantime, these afflictions of mine - this very season of multiplied pain - is the background against which God has commanded me to show forth His praise. It's also that thing that I am to reckon as 'good and acceptable and perfect,' according to Romans 12. God bids me that I not only seek to accept it, but to embrace it, knowing full well that somewhere way down deep - in a secret place I have yet to see - lies my highest good.

"Yes, I pray that my pain might be removed, that it might cease; but more so, I pray for the strength to bear it, the grace to benefit from it, and the devotion to offer it up to God as a sacrifice of praise. My strength in prayer these days is scant - I'll confess that. So for all the concentration I can muster in prayer, I must not dissipate it in seeking physical blessings only. Rather, I must spend a good portion of it seeking spiritual growth and praying for Christ's kingdom to go forth into this dark world. For such prayers are a way for me to know God and to know Him deeper, higher, richer, wider, and fuller - much fuller than if I comfortably cruised through life in my wheelchair.

"To this point, as I pen this chapter, He has not chosen not to heal me, but to hold me.

"The more intense the pain, the closer His embrace."

(Joni Eareckson Tada, A Place of Healing)

"Those who trust in the LORD are like Mount Zion,

which cannot be moved, but abides forever.

As the mountains surround Jerusalem,

so the LORD surrounds His people,

from this time forth and forevermore." (Psalm 125)

prayer request

My dear blog buddies,

Most of y'all know I have cluster headaches. Most of y'all know their patterns already: between cluster cycles (where episodes occur every day for weeks), my body normally has about thirty to forty days to rest and heal. This last time, I had eight days. Tonight is my fifth consecutive night of attacks for this new cycle, and to be honest, with episodes lasting eighteen hours of the daily twenty-four, my body's hurting. A lot.

Yesterday, we went back to the doctor who (changed my drugs yet again but) admitted that he doesn't know what to do anymore. At this point, we're all heartbroken and simply do not understand why this has been going on for so long, or why the episodes are not responding to any treatment.

Pride has made it extremely hard for me to write this post, but we so desperately need your prayers. If you could be praying for wisdom for my doctors, peace and strength for my family, and relief from the pain, we would greatly appreciate it.

We're continually humbled by all who have continued to pray and love on our family. I could not even begin to express in words how much it means.

Thankfully, these hard times are small potatoes (grin), and even in the worst of conditions, we've still got hope. And a Hope. (Jeremiah 29:11 , Romans 5:5)

"He will wipe away every tear from their eyes, and death shall be no more, neither shall there be mourning, nor crying, nor pain anymore, for the former things have passed away." (Revelation 21:4)

Love you guys.

time together isn't ever quite enough

I apologize for the lack of "real" posts lately. Life has been nuts, and I must confess: the blog has been low on my priority list. But now that my fever and cluster headaches have ceased (still looking for that homework cure), I promise stories will be up soon.

Love!

and it scares me to think that i could choose my life over You

I've reenacted the "lemonade stand" story so many times this week that I finally broke down and wrote it out with good ol' paper and ink tonight. But I'm going to save it for a later post (finally - I know, I know - a "Nanny Diaries" update). I realize this sounds like an intentional hook to reel you in, but it's not. I promise. (Besides, if I was trying to catch your attention, wouldn't it have been smarter to dig for more desirable bait? For example, mentioning that my Mary Poppins duties this week included filming a movie? But I digress.)

With my cluster headaches (still occurring about 17 hours of the day) lately, I've been studying as much as possible the actions needed to fight off our enemy. "For though we walk in the flesh, we are not waging war according to the flesh. For the weapons of our warfare are not of the flesh but have divine power to destroy strongholds. We destroy arguments and every lofty opinion raised against the knowledge of God, and take every thought captive to obey Christ." (2 Cor 10:3-5)

Though my body is under severe attack right now, I feel like what is being hit the hardest is my mind. I'm exhausted and growing increasingly weaker, but I think the enemy targets my thoughts to a more concentrated extent than my physical strength. Because it's where I'm most vulnerable. Because if my mentality and outlook is twisted and what I know questioned, fear takes over and all focus is lost. This is what makes 2 Corinthians 10:5 incredibly important.

Taking that a step further, Ephesians 6 lays out the entire armor of God, but the only piece of weapon that is intended for the offensive is the Word of God. The verse following the mention of the Word says in all circumstances we should be "praying at all times in the Spirit...."

"I am utterly convinced that the two major weapons with divine power in our warfare are the Word of God and Spirit-empowered prayer." (Beth Moore)

Over the last few days, I've been learning (slowly! very, very slowly) the importance of praying the Scripps when in trials, as well as when everything is seemingly fine. We have been given what's necessary to break through strongholds, current and to come.

On a personal level, it's hit me that though we're given weapons to fight for deliverance, my relationship with our Healer is more important than my actual healing. My tiny brain is having a very difficult time swallowing this concept. But all in all, prayer doesn't always change our circumstances (I may be stuck with this physical pain), but prayer always, absolutely changes us.

(The following prayers are taken from Moore's Praying God's Word and based on the verses in parentheses)

"My Father, You are the the Lord my God. I desire to love You, listen to Your voice, and hold fast to You, for You, Lord, are my life." (Deut. 30:20)

"Father, by faith in the name of Jesus, make me strong. Help me to realize that it is Jesus' name and the faith that comes through Him that heal me." (Acts 3:16)

"I love You, O Lord, my strength! You are my Rock, my Fortress, and my Deliverer; You, my God, are my Rock, in whom I take refuge. You are my shield and the horn of my salvation, my Stronghold! I call to You, O Lord, who is worthy of praise, and I am saved from my enemies!" (Ps. 18:1-3)

"I trust in You, Lord, so I'll let You rescue me. Teach me to delight in You and deliver me, O God." (Ps. 22:8)

One last Scripp I'm prayin' tonight (focusing on the last paragraph):

"I cry aloud to God, aloud to God, and He will hear me. In the day of my trouble I seek the Lord; in the night my hand is stretched out without wearying; my soul refuses to be comforted....

"You hold my eyelids open; ... I consider the days of old, the years long ago. I said, 'Let me remember my song in the night; let me meditate in my heart.'

"Then my spirit made a diligent search: 'Will the Lord spurn forever, and never again be favorable? Has His steadfast love forever ceased? Are His promises at an end for all time? Has God forgotten to be gracious? Has He in anger shut up His compassion?

"Then I said, 'I will appeal to this, to the years of the right hand of the Most High.'

"I will remember the deeds of the Lord; yes, I will remember Your wonders of old. I will ponder all Your work, and meditate on Your mighty deeds. Your way, O God, is holy. What god is great like our God? You are the God who works wonders; You have made known your might among the peoples. You with Your arm redeemed Your people, the children of Jacob and Joseph. When the waters saw You, O God, when the waters saw You, they were afraid; indeed, the deep trembled. The clouds poured out water; the skies gave forth thunder; Your arrows flashed on every side. The crash of Your thunder was in the whirlwind; Your lightnings lighted up the world; the earth trembled and shook. Your way was through the sea, Your path through the great waters; yet Your footprints were unseen...." (Psalm 77)

Love you guys.

send Your fire, send Your fire

I had stories to add to the ever-growing Nanny Diaries tonight, but my body is refusing to let me capture them for you.

After I said goodbye to my kiddos this afternoon and hopped in my car, I felt a small stabbing pain begin to grow behind my left eye. It’s been a month since my cluster headaches ceased to interrupt my daily life, and today’s attack surprised me. It’s been hours since it occurred, and I’m still not sure if my brain has fully absorbed the fact that this will most likely be the first of days and days of horrifically painful episodes.

Until this information sinks in (and especially when it does), we’re on our knees. While my enemy's assaults could be far worse than even nasty cluster headaches, we’re praying for God to utterly destroy as promised. ("There is none like God.... who rides through the heavens to your help, through the skies in His majesty. The eternal God is Your dwelling place, and underneath are the everlasting arms. And He thrust out the enemy before you and said, Destroy." Deut. 33:26-27) I’m running out of words this evening, so I’ll let Cece Winans' lyrics speak instead:

"I'm tired of principalities messing with me;

I'm tired of the devil stealing from me.

I promise he won't get one more thing.

I'm taking it back, taking territory.

I'm ready for the battle; I'm ready to win.

My weapon of power: He lives within.

I can't be defeated; the enemy gotta flee.

I'm taking it back, taking territory."

"The LORD is my strength and my song, and He has become my salvation; this is my God, and I will praise Him, my father’s God, and I will exalt Him. The LORD is a man of war; the LORD is his name. Your right hand, O LORD, glorious in power, your right hand, O LORD shatters the enemy. In the greatness of Your majesty You overthrow your adversaries; You send out your fury; it consumes them like stubble. The enemy said, 'I will pursue, I will overtake, I will divide the spoil, my desire shall have its fill of them. I will draw my sword; my hand shall destroy them.'

"Who is like You, O LORD, among the gods? Who is like You, majestic in holiness, awesome in glorious deeds, doing wonders? You stretched out Your right hand; the earth swallowed them. You have led in Your steadfast love the people whom You have redeemed; You have guided them by Your strength to Your holy abode." - Exodus 15:2-3, 6-7, 9, 11-13

"Fire by night,

cloud by day.

My Strong Tower, send the latter rain.

Lion of Judah,

Lord God, mighty in battle,

since You did it back then

we know You'll do it again." (Cece Winans)

courage, critters, and clusters

I was asked to write about courage: what it is, what it means to have it; how brave I am.

I’m not brave. The huge, six-legged critter on the wall this morning nearly gave me a heart attack. And huge is relative: in this case, to an ant (or an amoeba). However, it took me ten minutes to grab the Windex and spray that sucker until he swirled in a drowning dance of death. It took another five minutes to stop screaming that the demonic mini-monster was water-resistant and to find another means to remove him. He wasn’t actually water-resistant, but it turns out “non-toxic” cleaners don’t kill unwanted pests no matter how many times you squirt and yell “Die!” He did eventually sizzle out (thank you, eye make-up remover), but back to my point, I’m not brave.

Last night, I paced the linoleum floors of a local hospital, sobbing and shaking and scared to death. I’m not brave.

I have cluster headaches. They’re rare. Less than 1% of the population suffers from the stubborn things. And the majority of that 1% is composed of middle aged men. I’m an eighteen year old girl, and I most likely inherited the headaches from three great uncles. What do I have in common with them physically? Hopefully not much. (I’m not saying…. I’m just saying….)

A cluster headache (migrainous neuralgia) is the most intense of any headache with its extremely rapid, severe onset. I may be walking along with no pain whatsoever, and in five minutes, be experiencing the most excruciating agony of my life. It’s how they operate. On its own, an attack can last anywhere from thirty minutes to three hours. The pain for the remainder of an episode pierces as though an ice-pick were constantly being stabbed through one eye. Others have compared the pain to an amputation without anesthesia, natural childbirth, or my favorite: "Keebler Elves making cookies in your head, becoming claustrophobic, & trying to drill their way out through your eye." Ouch.

I’ve been battling the attacks for ten months now. On average, I have episodes every one to three hours from five in the afternoon until noon the next day. This generally lasts every day for forty days, and then I have a few weeks without them. I can remember the day when I became chronic. I can picture the way the doctor’s hands flipped casually through the chart, smell the antiseptic spray, and feel the paper when I realized I’d subconsciously ripped it.

I can remember the day because I was terrified. I dreaded the cluster attacks because of how they made me feel, but the word “chronic” indicated that this would become my future. For so long, being sick had been my identity, and I hated it. It was a part of me, but I didn’t want it to represent all that I am. The label “chronic” represented the fact that I had no control over what was to come, what I was to be. It wasn’t a death sentence, but it meant giving up dreams, surrendering what I thought was supposed to happen. I didn’t feel brave that day.

Last night, a cluster headache episode came on, and I couldn’t stop it. Normally, ten minutes inhaling pure oxygen shuts it off. It didn’t. I wasn’t afraid until I saw the look on my mom’s face when I told her it wasn’t going away. It wasn’t until my brother gave me a hug and started crying that I realized I wasn'the only one who was afraid.

When we arrived at the emergency room, I walked and walked, a restlessness fed by the consistent pain. I think I kept moving because, on some level, I was worried that if I stopped, the hurt would somehow overtake me.

In that moment, random verses started running through my mind:
“Three times I pleaded with the Lord about this, that it should leave me. But He said to me, 'My grace is sufficient for you, for my power is made perfect in weakness.' Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me. For the sake of Christ, then, I am content with weaknesses, insults, hardships, persecutions, and calamities. For when I am weak, then I am strong.” (2 Cor. 12:8-10)

“Beloved, do not be surprised at the fiery trial when it comes upon you to test you, as though something strange were happening to you. But rejoice insofar as you share Christ's sufferings, that you may also rejoice and be glad when his glory is revealed.” (1 Pet. 4:12-13)

And I begin to understand a different side of courage. It’s not about having the ability to fight off your struggles. Christ’s power works best is weakness. And as I’m discovering, He’s working in the trembling, hurting, and confused.

The Savior we seek didn’t promise that life on earth would be easy. I mean, really? Jesus was murdered and homeless. But unlike any religion, believing in our Christ guarantees a secure afterlife. This life hurts in a billion different ways, but “…I consider that the sufferings of this present time are not worth comparing with the glory that is to be revealed to us.” (Rom. 8:18) This is as close to Hell as I’m ever going to get. Heaven awaits! After nights like last night, there’s absolutely an ache for it to come soon. “He will wipe away every tear from their eyes, and death shall be no more, neither shall there be mourning, nor crying, nor pain anymore, for the former things have passed away.” (Rev. 21:4) In my Bible, I’ve jotted in “cluster headaches.” THIS is why we celebrate and rejoice even when it seems unbearable. It’s not about being brave. I’ve spent so much time in doctors’ offices hearing others’ stories: horrific stories. But I’ve seen these people, and I truly think they’ve figured out true courage. True courage is when you trust God even when the darkness is so thick around you, you don't know where you're standing.

You see, a lot is out of my control, but God remains my “constant source of stability.” (Isaiah 33:6) Not because of anything I do, but because of who He is. Pain would be worthless if we served an unstable God who had no way of controlling what happens. However, He remains sovereign even in the worst of conditions; He's still there in the chronic headaches and the E.R. visits and the bug attacks. I may not be brave, but I'm learning to trust an immutable Savior. “…I will hope in Him…” (Job 13:15) “…and hope does not disappoint us.” (Rom. 5:5)

psalm 56:8

"You've kept track of my every toss and turn throughout the sleepless nights, each tear entered in Your ledger, each ache written in Your book."

- Psalm 56:8

sorry it's so late... I knew You'd be awake

"He who keeps you will not slumber....
Behold, He... will neither slumber nor sleep." (Psalm 121:3-4)

He is still awake when only the hum of the air conditioner reverberates through the house, when the stairs creak as though they come alive in the darkness, when the silence is so small your thoughts begin to scream and take over the space. He is still awake as your family sleeps behind closed doors, as your footprints stay indented in the carpet as you pace back and forth and hesitate before their rooms, as you wait and listen to hear if you’re entirely alone. He is still awake while you wish for the unpreventable to go away, while you sweat over the nightmares that come with closed eyes, while you wonder if the pain will kill you. He is still awake in the unexpected trips to the E.R., in the panic when you can’t remember, in the moments when exhaustion holds you down. He is still awake when you don’t get it but need to, when you ache for someone else to understand, when you realize He does. He is still awake when you discover "steadfast love surrounds him who trusts in the Lord," when you feel that "underneath are the Everlasting Arms," when you see "His tender mercies are over all His works." He is still awake as you sleep enfolded by the Almighty, as you rest peacefully in His sight, as you hear His Spirit whisper: it will be okay.

the end is near

Our medical "vacation" is nearing the four week mark, and thankfully, an end. Mom and I plan to sleep in our own beds Wednesday night and could not be happier to be back with the rest of the family.

To update, tonight will be the 36th evening of cluster headaches. Our goal was to complete twenty treatments up here; in a few days we will have completed what we set out to do, but unfortunately the treatments have not affected my body. We'll be heading home regardless and will continue praying for relief from the pain.

I realize y'all have been praying for a long time, and I can't thank you enough for consistently loving on our family. It's been a hard year, and I'm in tears simply writing this post. In the good and the bad, our God is still faithful.

More to come later this week. I'm beginning to appreciate the little joy that comes from not sharing internet access with a hotel full of people....

Love you guys!

time in between

I wanted to post a super quick update for my readers, all six of you (hey, Grandma!), with a little explanation of what's happening.

Most of y'all know how difficult the past few weeks in particular have been. Currently, cluster headache episodes begin around 5 P.M. each day and last, on average, until about 11:45 A.M. the next morning. On Sunday, my mom and I left town on a medical-emergency-trip because, after so many rounds of clusters this year, my health has been declining rapidly. I say all of this to justify a severe lack of "real" blog posts since, well, I started this site and especially lately. The last few days, all blogging attempts have been limited to post-it notes in doctors' waiting rooms and transferred via hotel internet in small amounts at a time (so as not to upset my BFF Nick, who totally just waved from the front desk).

Tonight will mark the sixteenth consecutive evening of "suicide headaches." Over the last year, we've charted the cluster cycles and a normal one lasts around thirty days, stops for about four weeks, then pops up again unwelcome after the three week break has come to an end. They're rare, complicated, stubborn little things, but since my three minutes in the business center is ticking away, a description of what the heck a cluster is anyway will have to come later. Google, yo.

So much about my life right now is rather unstable and inconsistent except, however, my God. Knowing you guys are praying for me and my family means more than I could even begin to describe, especially during the thirty seconds I have to end this post. (Hang on, Nick!)

These times are my in between days: praying for relief from the pain and hoping for answers; but it comes down to this: "the God whom we serve is able to save us. He will rescue us.... But even if He doesn't, we want to make it clear to you" that we will praise Him despite it all.

"But it's the time in between

that I fall down to my knees,

waiting on what You'll bring

and the things that I can't see.

I know my song's incomplete,

still I'll sing

in the time in between." - Francesca Battestelli

I love you all so, so much.

never, never, never in vain

Earlier this evening, after a cluster headache episode ended, I stopped pacing and plopped down on the tile in the center of our living room half crying and upset because of the pain, half ticked at the family cockatiel who took that exact moment to start chirping "pretty, pretty, pretty, pretty, pretty, pretty bird" as loud as his amazingly tiny vocal chords can screech. The phone rang, and I let it ring. It was an altogether pathetic fifteen minutes. I had been home alone for over seven hours, and at the time, I didn't feel like getting up or studying or cooking or moving at all. I wanted to sit on the floor with my oxygen tank and enjoy my private pity party. I realize my problems could be so much worse, but it was a very melodramatic fifteen minutes for me. Like I said, pathetic.

I heard my cell vibrate against the tile signaling a new text. I flipped open the phone and read a Twitter update from John Piper: "Never, never, never in vain: 'Whatever good anyone does, this he will receive back from the Lord.' (Ephesians 6:8)."

Never, never, never in vain. Not the right actions we choose even when they're hard, not the physical pain we pray will end, not the continued fight for God's glory when it feels like we're stumbling around and only making mistakes. Never, never, never in vain.

Ephesians 6:10, a few verses after the one Piper references, starts the well-known description of the Armor of God: "Finally, be strong in the Lord and in the strength of His might." Through verse 17 is a list of all that you 'put-on' in order to "stand against the schemes of the devil. For we do not wrestle against flesh and blood, but against the rulers, against the authorities, against the cosmic powers over this present darkness, against the spiritual forces of evil in the heavenly places."

This chapter brings up various, deep theological topics, but when my dog crawled onto my lap as I sat on the cold floor this evening, my sleep-deprived brain jumped instantly to 2 Corinthians 9:8, and in so doing, started processing the central ideas of this random rambling of a post. Now it's nearly 1 AM, and any attempts at intellectual brilliance have been stifled by the sleeping pills that are telling me to get back in bed.

But back to 2 Corinthians and, hopefully, my point. "God is able to make all grace abound to you, so that having all sufficiency in all things at all times, you may abound in every good work." He tells us to be strong in Ephesians, but if you flip back to Corinthians, it's clear God specifically gives us exactly the equipment to use. He doesn't throw us onto the battlefield with a laugh and a good luck. "All sufficiency in all things at all times." Sufficient, according to Mr. Webster, means "enough to meet the needs of a situation or a proposed end." But taking that a step further, Romans 8 says "the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit Himself intercedes for us with groans that words cannot express." So it's not just a matter of meeting our needs, a one-size fits all dose of strength. I may be wrong, but "intercedes for us with groans" gives the impression that the help we receive is incredibly personal. Awesome, right?

This present world, this present darkness that surrounds us, hurts. No denying the days aren't always blue skies and sunshine. The person who believes becoming a Christian immediately makes one immune to grief is an idiot. Just sayin'. But we do have confidence that even when our actions seem pointless and our pain, futile - they're not; it's not. We serve a God who works through us to use our weak, ordinary, measly human state so He's magnified.

"Now may the God of peace... equip you with everything good that you may do His will, working in us that which is pleasing in His sight, through Jesus Christ, to whom be glory forever and ever." Hebrews 13:21

Our God has our back (and our front) and is constantly supplying us with all that we need to serve Him. Plus, in serving Him with what He has provided, we're also giving Him glory. Which when it comes down to it, that's ultimately our life purpose, correct?

Somewhere between the chant of "I can't do this" and "It's too much" comes Christ's promise, "My grace is all you need. My power works best in weakness.” I love that His power is the same power from Ephesians 6:10 from the beginning of this post: "Be strong in the Lord and in the strength of His might." I've always read Ephesians 6 with the initial mental image of a glorious, well-built war hero. But His "power works best in weakness." The scrawny, sick, distracted, wounded, well-meaning, average, terrified soldiers are supplied with the strength to conquer and keep on. We tend to act as if we have to pull ourselves together before we are able to serve. Surrendering to Christ starts now, in our current condition, to be used immediately, especially in the hard times. And we know that we have all sufficiency at all times, having enough to meet the needs of our proposed end.

"For I consider that the sufferings of this present time are not worth comparing with the glory that is to be revealed to us." (Romans 8:18)

So let's stand up in the strength of His might, wipe away the tears from the pain and fear of what we feel we can't handle, and start moving with the knowledge that in the pursuit of Christ, our actions - heck, our lives - are never, never, never in vain.

"He kept right on going because he kept his eyes on the one who is invisible." (Hebrews 11:27)