I woke up in pain.

I woke up in pain.

It was surprising - breath-taking, even.  I had blissfully forgotten what that was like.

Quickly I ran through the inventory in my head:  Was I stressed?  Was I skimping on sleep?  Had I been making poor food choices?  Had I not been moving enough?  Had I been moving too much?  Was the weather changing abruptly?

All of these questions really just shoots off the big question: why?

Why was I in pain?

Why AM I in pain?

Why, why, why?

Focusing on my sleeping and eating is easy because they are masks, cover-ups for the real questions I'm trying not to ask: Why does pain exist?  And why me?

Is this God, with a divine plan?  Is this a result of genetics?  Is it toxins present in the American diet?  Or the result of living in a too-sterile environment?

I put on comfortable, non-hurty clothes.  I dragged my body (plus the 30 lb toddler) up the stairs to give him a diaper change despite how much my achy joints protested.  

All day long I did the next thing.

Remembering the advice they gave at Mayo, I texted my husband just one line:  I'm really hurting today.

Don't focus on the pain, they said.  It just makes it worse.  Don't mention it at all on the normal days and on the very difficult days, just say something short.

So I did.

I texted my one line and he responded with appropriate concern.

And I went on with the day.

I tried not to think about the pain.

Does that work for the rest of life, I wonder?

Is it that easy?

The world is messed up.  We've established that.

Can we just suppress and repress the pain of this world?  Can we go on like life is fine and only mention the pain on the very-hard days?  Are we just fooling ourselves into having a more comfortable life?  Can we ignore the discouragement of living amidst a fallen creation?

Don't focus on the pain, they said.

But what about the days when you can't see past the pain?

The Whole30 Challenge -- TAKE TWO

Back in September, my husband and I completed Whole30, a 30 day challenge of eating real food and eliminating addictions to sugar, wheat, etc.  It was hard, but GREAT!  I had far fewer migraines, hardly any fibromyalgia pain, lots of energy, cut out my sugar addiction, and ended up losing 20 pounds in the process.

We've decided to do another Whole30 in January!  We totally splurged on Thanksgiving and I've been paying for it the past few days with very achy joints.  So now I'm back to collecting recipes that are FREE of sugar, dairy, gluten, corn and legumes.  Can you say "Hello, Pinterest"?

Although you can start Whole30 at any time, they have three "scheduled" starts throughout the year including January 1st.  But since my husband's birthday is in January, we'll be waiting until after his birthday to start meaning we'll finish mid-late February.

I'm already excited (and scared) to do another Whole30!  But one thing that is giving me extra motivation is that we have friends doing it with us this time!  We might not all start on the same date, but as of right now, we have four friends who are doing Whole30 in January!  My goal is to encourage 10 people to do Whole30.  It really did help me and I think it could do the same for you.  Do you want to join us??

shoe recommendations for erythromelalgia

Warm weather is here!  We've been soaking it up with trips to the playground (sometimes twice a day!) and family walks.  One thing was stopping us though: my Erythromelalgia!  Too many walks were being cut short due to pain so my husband announced that it was time for me to invest in some new shoes.  I googled around to see what shoes were recommended for Erythromelalgia, but I didn't see too many suggestions, so I thought I'd share my choices here.

We looked through several different options for shoes and talked through the pros and cons.  My husband encouraged me to get two pairs: one for activity and one for style.  Obviously wearing any kind of closed toed shoe (especially athletic shoes!) is a no-go in the summer with Erythromelagia so we needed the "activity pair" to be super comfortable and good for long distances, but still open.

I've heard so many good things about Birkenstock's so I wanted to try these Kairo Sandals (sold through American Eagle), but we decided they were too expensive and not versatile enough.  My sister has a pair of Saltwater Sandals.  They are supposed to be incredibly comfortable and durable.  I'd still love a pair some day, but I was afraid that they would be too hot around my toes to be an every day pair.

For the "activity shoes", we ended up choosing these Teva Zirra Sandals.  I couldn't be happier!  We bought them for walks and special activities, but I've ended up wearing them all over the place!  They were very comfortable from the time I first put them on.  My Erythromelagia has still flared up while wearing them, but the shoes don't seem to be contributing to the problem.  I would feel comfortable doing all sorts of activities in these shoes, so I definitely recommend them to others with Erythromelagia looking for a replacement for athletic shoes.  

The second pair I went with were these American Eagle Braided Sandals.  I had a similar pair for the past couple of years, but last fall they were falling apart!  I ended up getting this replacement pair because they served me well.  They pair equally well with shorts or a sundress so I like how versatile they are.  My one complaint is that they are not comfortable for a long time.  Running to the grocery store or spending the morning at church?  No problem.  But when I was trying to use them to go on walks?  Definitely a bad idea!

Finding functional shoes might not seem like a big deal to most people, but with Erythromelagia it is a challenge.  I'm grateful to have found these options so I can stop worrying about my pain and enjoy the litte things like an evening walk with my family and pushing my son on the swing.

**All opinions are my own.  I received no compensation from any company for writing this - I am simply sharing my experience.

repost: bathtub of emotions

**this was originally posted on august 17th, 2011 but it's been on my mind lately as I've been thinking more about dealing with chronic pain in the midst of other general life stressors.  hope you enjoy the read!


This has been one of the most helpful communication tools in my life so I thought I would share.  I think it's especially good on those days when I am in deep pain and working with people who don't understand what that's like.  I've explained this over and over again when I was an RA and working with girls.  Mr. Mays uses this a lot to understand what I'm thinking and why I'm responding a certain way.

Imagine that you have a bathtub for your emotions and for stress.  Each time something is stressful or upsetting, it adds to the tub.  When the bathtub is full, the reaction comes.  That's your personal limit and you response in anger, frustration, tears, or shutting down.

Each situation of life adds a different amount (and each person can handle different amount of stress).  For instance, if you lost your keys and were late to an appointment, that might have only filled up your bathtub 1/10 of the way.  Another day, your car may have been stolen and that is especially stressful to you, so your tub is half filled by that situation.

Here's the key:  Life piles up.  Stress piles up.

When you lose your keys and you suddenly melt into a puddle of tears, it might be hard for you (and others!!) to understand why that small situation was so upsetting.  After all, it only filled up your bathtub 10% of the way!   But what you've forgotten is that it's not just the lost keys....  Before that happened your emotional bathtub was already filled to 95% with other issues so that last 10% pushed you over the edge and your bathtub was overflowing.

Caleb knows when I'm upset about something to ask how full my bathtub is.  It sounds silly, but it really has helped us!  When my pain levels are up, my bathtub is already filled to about 80%!!!!!  So when something that is seemingly small happens, I can get upset quickly.  It has helped our relationship a lot for him to understand how many "little" issues are filling up that bathtub.
It's a very simple word picture.  But it's proven to be really helpful for me.  Hope that this can help others (especially those dealing with pain).  Chronic pain is debilitating.  When others can't understand, it is isolating.  And it's even worse when you can't even understand yourself.

good reads {mental health and the church}

As someone who majored in an applied psychology at a religious university, I'm always interested in the conflation of psychology and Christianity.  To be honest, many times I cringe when I hear advice that Christians have been given in regards to mental health.  Mental health is always, always a difficult topic and there are a variety of opinions.  When you add in Christianity, the subject becomes even more difficult to navigate.

This week many Christians writers/bloggers have been addressing mental health as the son of a famous pastor died by suicide after a longtime battle against mental illness.  My deepest condolences go out to the Warren family during this time.  I am also remembering the many other families who have lost loved ones to suicide and (perhaps due to the callousness of the Church and poor theology) were left mourning in silence and, sadly, even shame.

Take the time today to read these post about mental illness and the Church.  It's an important topic and it needs to be addressed.  I've included an excerpt from each post.

Rick Warren (in an email sent out to his staff seen here at CNN)

I'll never forget how, many years ago, after another approach had failed to give relief, Matthew said " Dad, I know I'm going to heaven. Why can't I just die and end this pain?" but he kept going for another decade.

Ann Voskamp (A Holy Experience): What Christians Need to Know about Mental Illness

There are some who take communion and anti-depressants and there are those  who think both are a crutch. 

Come in close — I’d rather walk tall with a crutch than crawl around insisting like a proud and bloody fool that I didn’t need one.

Al Hsu (Christianity Today): When Suicide Strikes in the Body of Christ

Novelist Willa Cather, in her book My Ántonia, offered this prayer at the funeral of a suicide: "Oh, great and just God, no man among us knows what the sleeper knows, nor is it for us to judge what lies between him and Thee." 

Kristen Howerton (Rage Against the Minivan): Rick Warren's Grief: The Comfort and Cruelty of Speculating on Suicide

When we hear about grieving parents it can be so tempting to try to assign blame, because if they aren’t to blame, then we have to grapple with the reality that sometimes, tragedy is senseless. This is an uncomfortable truth: awful things happen to children that parents cannot prevent.  It’s a truth so painful that we would rather throw grieving parents under the bus than face it. Searching for a familial reason for Matthew’s suicide allows us to believe that if we can avoid their mistakes, we can feel confident that mental illness will never ravage our own child.  We assuage our anxiety with the false notion that, if we do this parenting thing right, our child will be spared from ever struggling with depression or suicidal thoughts. 

It’s comforting, but it is a lie. A lie we fuel through speculation at the expense of grieving parents.

Dianna E. Anderson (Faith and Feminism): Other People's Reasons and Our Narratives: On the Appropriation of Suicides

But consider this: whose story is it to tell when a person commits suicide? What right do we have to ascribe a meaning to their personal tragedy? 

Surely, the appropriation of another person’s story – especially to support a point about selfish willfulness – has to be considered, has to be weighed, and has to be understood. Surely, this distilling of a person’s story – complex, multi-faceted, and ultimately tragic – into one line is a microcosm of everything wrong with how we tell, appropriate and understand each other as people, as complex human beings, as sisters in Christ. Surely, we need to discuss how we talk about and handle suicide and depression.

Amy Simpson (Her.Menutics): Christians Can't Ignore the Uncomfortable Reality of Mental Illness

Recently, I've spent a lot of time writing and speaking up on behalf of people affected by mental illness and their families. I want to see the church embrace these people as we never have before, in keeping with our mission in this life.... 

As followers of Christ and as his representatives, we are called to follow his example. We are called to reach out to suffering people, to stick with them rather than shrink away. We are called to believe that no one is ever beyond hope, past the point where God's grace and love apply to them. God does not give up on people, even if they give up on themselves. After all, we are not called to have all the answers, understand all life's mysteries, or fix everyone's problems. But we are called to love.

Rebekah Lyons (CNN Belief Blog): My Take: Let’s Stop Keeping Mental Illness a Secret

As people of faith, let’s talk about mental illness, giving others permission to do the same. Let's release the stigma that keeps this a secret, holding untold millions captive. All secrets lose power when they exit the dark. The church is a place where we should be able to come as we are, with our longings for what we hope to be. Jesus always pursued the weak with open arms. When we are broken and fragile, He draws us closer to Him in ways we’ve never known. 

Let's not shame mental illness with the judgment of spiritual weakness...Faith should never undermine the necessity of doctors, of medications and therapy, because we must deploy every effort afforded to us when we tackle our brokenness.  

**If you are struggling with suicidal thoughts, I urge you to talk to someone!

National Suicide Prevention Lifeline (24/7)
 1-800-273-TALK (8255)
 http://www.suicidepreventionlifeline.org/

life currently

October seems to always be a high pain month, probably because it's when the weather turns cold.  It was three years ago this month that I first got sick.  At that point I knew that something was wrong with my body, but I didn't know it would be forever.  Every day for the last three years I have been in pain (to one degree or another).  Of course, by now it has become "normal".  Whereas I struggled every day in the beginning, I manage fine most of the time and it's only the really bad days that knock me off my feet.

Unfortunately these last few weeks has been full of hard days.  It's been high stress all around lately and the fact that we haven't slept through the night in two and a half months doesn't necessarily help.  Life just feels hard.  

These days enveloped in pain remind me that this earth isn't my final home; that this wasn't God's original plan for the world.  Why am I so quick to forget this?  God intended for us to live in a Genesis 2 world, free from sin and pain.  Instead we feel the weight that the Genesis 3 curse has left.  While we train our eyes to look for beauty and find joy in every day, we can't help but recognize that the world is still broken.

I am left searching and unsatisfied by this world.  But I have hope in a life yet to come where 'my faith will be my eyes' and I will be whole and healed.

real moments of new motherhood

I awake with a pounding head, blurry vision and an upset stomach.  It's the third time this week.  Normally I would stay in bed, pull the covers over my head and try my best to sleep through the pain until the migraine relented and I was able to get back to life.

But today that's not an option.  Seven weeks ago I became responsible for another which means I can't just pull the covers over my head.  Instead I crawl out of bed and soothe the crying babe.

How can I care for this tiny human when I'm the one who needs to be taken care of?  He's crying for his mother, but right now I'm crying for mine.

I am hit with a wave of nausea.  I know it would be a tiny bit better if I could just lay down, but I can't.  Please, Lord, not today.  I just need to be well enough to care for my baby.  Looking across the room, I eye the bucket sitting there.  Can I just make it until the end of this feeding?  ...nope.  I hear the baby howling from the crib where I hastily laid him as I sit hunch over the bucket.

Everyone talks about how hard it is to have a newborn, but not many talk about doing it with a chronic illness; when you are in a battle with your body to simply get out of bed in the morning.  So far I've been managing through my daily pain, but a migraine is like a giant wave that knocks you to the ground no matter how firmly you have your feet planted.

An arsenal of baby supplies are spread over my comforter.  My plan is to only leave the bed to change diapers.  Carrying a baby around with a migraine is simply not a good idea.  To my left is a Boppy, a blanket, a soother and a burp cloth.  To my right is his pack n play.  I can do this.  I have to do this.

But the questions linger in my mind.  How will I ever be a mother when I'm this sick?  How do you explain to a baby that mama just can't get out of bed that morning and that she just really, really needs you to stop screaming in her ear?

I hear the hum of the garage door and whisper in my little man's little ear, "Papa is home.  It's gonna be okay."  On his lunch break, my dear husband has brought me food and drink.  We both know from experience that if the migraine gets too bad we'll end up spending the evening in the emergency room and we'll try everything we can think of to stop it.

The shades are drawn.  An ice pack is on my head.  The medicine has been taken.  I'm sipping liquids as much as my upset stomach will allow.  A fan is blowing on my head.  The lunch break is over and he must return to base.  Together we pray that I will receive the strength to continue. 

Baby finally falls asleep on my chest.  I lay him in his bed hoping to close my eyes against the sun which feels like lasar beams penetrating my skull.  Thirty seconds later he is awake and screaming.  I take him in my arms again speaking softly to calm him for his sake as well as for mine.  Sweet baby, mama is doing her very best today.  I'm trying so hard to give you everything you need.  Please, please just sleep for me today.  Please just stop crying.  I'll make it up to you another day. 

As I breathe in air to sustain my body, I breathe in grace to sustain my soul.  I tell myself the truths that I am prone to forget.

This is not the day to compete for the New-Mother-of-the-Year award.  Today is not a measure of how much I love my baby.  I will not let this day be indicative of the next twenty years nor let it scare me into fearing this heavenly appointment.

Today is not easy.  Today is not enjoyable.  But I know that God has given me enough grace to make it through today.  The migraine, the crying babe, the pain.  All of it is covered by the grace I've been given.  Tomorrow holds the promise of "new mercies".  Which is good.  I've exhausted all that I've been given for today.

And although my son slumbers through my words, I whisper in his ear:  "We're gonna get through, Haddy.  We've got grace.  And life is all about grace."

T'was grace that brought me safe thus far and grace will lead me home.

Currently Reading: Help For The Fractured Soul

Drawing on fifteen years of experience as a prayer minister, Dr. Candyce Roberts shares her insights on working with highly traumatized people in her book Help For The Fractured Soul.  This book is a guide for laity who are working with abuse victims, specifically in the realm of prayer ministry.

Throughout the book, Dr. Roberts shares many stories from her personal experiences working with victims.  These stories, although very sobering, help to give a real-world context to the advice she is giving.  Roberts is not afraid to include stories that ended with a less than favorable outcome (e.g. clients who accused her of trying to do more harm and left without finishing counseling).  This is a reminder that prayer ministry is not always easy nor does it always end perfectly.  She reminds readers multiple times that we cannot change people and that we must get frustrated with their   choices - we can encourage healing, but we cannot force someone to heal if they refuse to.

I appreciated that Roberts emphasizes in several places that we must only work within our scope of expertise.  She stresses that prayer ministers should never try to diagnose, or take the place of a licensed medical professional/psychologist.  Rather we must focus on what we are qualified to do (lead people before the throne of God) and be willing to refer them to a professional if needed.

Roberts reminds readers that before leading a prayer ministry, they must first be healthy themselves and be personally committed to inner-healing in their own lives.  Later she gives guidelines for setting boundaries with clients.  This is an important reminder to be fully investing in the lives of those to whom you are ministering, but to still value your own life and your own personal health.

While the book is directed at those working with the highly traumatized, I found many truths that could apply to any Christian.  I greatly appreciated her words on denial when she said that we will not know the truth if we are living in denial in any area of life.  The chapter on forgiveness was also poignant who anyone who has ever been hurt.

Dr. Roberts has clearly worked in this field for many years and has gleaned wisdom from her time as a prayer minister.  This book would be a great starting point for anyone interested in prayer ministry or simply for the individual trying to understand and aid a friend who is highly traumatized.   However, I will note that this book is clearly for the lay minister.  Prayer ministry can be extremely effective, but I don't believe it should replace a qualified counselor or psychologist.  Rather the two should be conflated.



Disclosure: I was given a free copy of this book by the publisher in exchange for an honest review.

community life

Lately I've been thinking a lot about community, specifically about the Church.  Living in communion with other people means that you share in their lives.  In other words, if you are truly involved and invested in a community, your happiness may be tinged with sorrow and your sorrows with happiness.


Pregnancy is so visible at this stage - it is obvious to everyone that a baby is on the way.  It is the springboard for many conversations about babies, pregnancies, due dates, names and more.  Yet as I get further along in pregnancy, I cannot help but think about women who are longing to be mothers.  The women who ache because they have been waiting for so long to carry a baby.  I can simply be going about my business buying groceries or walking into church, yet it is a reminder to a woman of an unfilled dream.  So even in our happiness, I want to be sensitive to those who are waiting and hurting.


At the same time, I was remember a couple stories of people I know who have carried babies to full-term even when they have been told that the baby is "incompatible with life."  We are thankful that (as far as we can tell) everything is going well with our baby.  But we also think of those families for whom pregnancy is a time of turbulent emotions.  I must trust that God has a plan in each individual situation so I cannot live in guilt or deny happiness over our baby.  But I want to be a friend who can walk with people through their sorrows and who truly empathized with those who are hurting.  After all, I have been the one who is hurting and, no doubt, it is only a matter of time before I am the one who is hurting again.

I had the same conflation of feelings at my wedding.  So, so happy to be marrying Mr. Mays...yet aware of the fact that some people wanted to be married and were still waiting.  And also aware that marriage isn't for everyone - some people are really happy being single and perhaps they get tired of the idea that marriage is the ultimate goal for all people.


This comes through in many other areas of life too.  Just because my grad school plans have been put on hold because of the baby, I still want to rejoice with those friends who have are getting their advanced degrees (lucky ducks! ;).  I remember being so sick in college and struggling to rejoice with friends over things when I kept thinking about the fact that I could barely walk back and forth to classes.  Everything that other people were happy about seemed so frivolous in the moments when I was waiting for a call from a doctor that could potentially change my life forever.

Ultimately, our motivation for living this way should be our desire to be like Christ.  He commanded this lifestyle and He modeled this lifestyle.  While on earth, He empathized with the people around him (think of his weeping over Lazarus' death, his care for the woman at the well, taking the time to talk to the women who was bleeding).  He could have been focused on His impending death and pain, yet He took the time to engage in life with those around Him and to be present in their sorrows and joys.

The best example I've heard of this style of living comes from a professor at Cedarville.  We were studying Psalms and I was struggling with the fact that we (as Christians) sometimes ignore the lament psalms.  My life at that stage definitely fit the psalms of lament more than the psalms of joyful praise and I was so incredibly annoyed with Christians who pretended that everything was perfect in life.  The professor said that living in community meant that we embraced both of these.  And then he shared a story from his life of a couple who very unexpectedly lost their adult daughter.  The entire church showed up to the funeral, mourning with them and surrounding them in love and support.  The very next day, there was a wedding at the church.  No one expected the couple to show up.  No one would have been offended in the slightest if they had stayed home in their grief.  Yet there they were.  When asked about it, they said (paraphrased), "Yesterday the entire Church mourned with us in our sorrow.  Now it is our chance to rejoice with the Church and show them the same love that they showed us."

May we all strive to have a similar attitude.

God in the darkness

“I will have nothing to do with a god who cares only occasionally. I need a God who is with us always, everywhere, in the deepest depths as well as the highest heights. It is when things go wrong, when good things do not happen, when our prayers seem to have been lost, that God is most present. We do not need the sheltering wings when things go smoothly. We are closest to God in the darkness, stumbling along blindly.” 

-madeleine l'engle

quote

"What does it mean, then, to grieve as one who has hope? 

It means we grieve with one eye forever fixed on the eschatological horizon."

-b. witherington

Repost: Journal Entry

Journal Entry January 24th, 2010
Originally Posted January 25th, 2010

It is 5:00am. For hours I have tossed and turned, searching for relief from my pain. I find none.

I detest, I loathe my body. This is strong language, yet it is the secret that I carry of abhorring my very being. Fighting bitterness over disappointment and despair of a body turned against me. It rebels. I have little control. What hope is there? What reason to push on and fight for another day?

At 5am (as I wait for dawn after a painfully slow night) it is difficult to see any. Yet I must go on. I must fight. I must wage war against my flesh. I refuse to let me body win. I refuse to be captive to it. I refuse to let it suck all the joy from my life.

Dualism. I am more than simply a physical being. I have a soul that can never die. While my body languishes away, my soul can be filled aplenty as it gorges on God's grace and faithfulness.

raising awareness

My case isn't this advanced yet.  I don't really have eloquent words to add to this, so just watch the video.

**added note:  there is nothing worse than having this illness and having no one believe you (not even your doctors).  because of its rarity, there are still a number of doctors who have never heard of this and they treat you like a complete idiot when you try and explain this.  when i finally did get diagnosed, the doctor congratulated me on self-diagnosing (which was the exact same thing that the other doctors had scorned).  keep fighting.  find a doctor who will listen.

just this :)

Today I am writing a long letter to update my doctors at Mayo.  I really should have done this about 3 months ago, but it's been a little crazy in my life!

Writing this update is interesting.  I am remembering back to the times when I have been the sickest and remembering times when my soul felt completely starved.  There were days that seemed hopeless.  My emotional bathtub was constantly overflowing.  Just getting out of bed was a struggle.  I was not only waging war against my body, but against my mind.  When you're in constant pain for months on end, your mind considers things that otherwise would have seemed ludicrous.

Am I healed?  Well, no.

Have I found grace to keep pressing on?  Yes.

Does that make it all better?

No.

I still have about 50 bajillion questions to ask God someday.  My theology and my mind have been stretched as I've sought answers to the endless parade of questions in my mind.  My eyes still well up with tears when I think about those dark, dark days.

Psalm 23 says that God will be with us when we walk through "the valley of the shadow of death."  Some translators have said that it could also be translated: "when I walk through the valley of deep, deep darkness."  That's how it feels some days.  And it is something that few people can understand (truly, no one can exactly understand your situation as each one is unique)

I have a new sensitivity for theologies of suffering.  When someone else I hurting, I resist giving them the "pat Christians answers" that stings one's soul like lemon juice in a papercut.

Some days I think about the "friendly fire" in Christianity.  When our own people are wounded and aching, why do we inflict more pain?

That's all I have for today.  Nothing profound or new; just some reflections on living a hurting life.



p.s.  As I was digging through all my papers from Mayo I found some wedding planning stuff.  :)  It's fun to remember that even at that "low point" my mom and I were planning for the future.

bathtub of emotions

This has been one of the most helpful communication tools in my life so I thought I would share.  I think it's especially good on those days when I am in deep pain and working with people who don't understand what that's like.  I've explained this over and over again when I was an RA and working with girls.  Mr. Mays uses this a lot to understand what I'm thinking and why I'm responding a certain way.

Imagine that you have a bathtub for your emotions and for stress.  Each time something is stressful or upsetting, it adds to the tub.  When the bathtub is full, the reaction comes.  That's your personal limit and you response in anger, frustration, tears, or shutting down.

Each situation of life adds a different amount (and each person can handle different amount of stress).  For instance, if you lost your keys and were late to an appointment, that might have only filled up your bathtub 1/10 of the way.  Another day, your car may have been stolen and that is especially stressful to you, so your tub is half filled by that situation.

Here's the key:  Life piles up.  Stress piles up.


When you lose your keys and you suddenly melt into a puddle of tears, it might be hard for you (and others!!) to understand why that small situation was so upsetting.  After all, it only filled up your bathtub 10% of the way!   But what you've forgotten is that it's not just the lost keys....  Before that happened your emotional bathtub was already filled to 95% with other issues so that last 10% pushed you over the edge and your bathtub was overflowing.


Caleb knows when I'm upset about something to ask how full my bathtub is.  It sounds silly, but it really has helped us!  When my pain levels are up, my bathtub is already filled to about 80%!!!!!  So when something that is seemingly small happens, I can get upset quickly.  It has helped our relationship a lot for him to understand how many "little" issues are filling up that bathtub.



It's a very simple word picture.  But it's proven to be really helpful for me.  Hope that this can help others (especially those dealing with pain).  Chronic pain is debilitating.  When others can't understand, it is isolating.  And it's even worse when you can't even understand yourself.






Photo Credit:  http://mymodernroom.com/tag/bathtub/

the worst.

the worst part about being chronically ill is not the pain.  it's not the endless prodding doctors.  it's not the questions or the stares from others.

the worst part is when you begin to hope.

a week goes by, perhaps even two.  the pain is lessening.  hope begins to build.  your mind starts playing tricks on you.  maybe i made all this up.  maybe it is going away for good this time.

and then it happens.  the hope that you have so slowly and carefully fostered is suddenly smashed to smitherings.

three days in bed.  cringing from the touch of another who meant to be gentle.  crying as you wait to be picked up on the side of the road because your legs just couldn't make it home.  tossing and turning through the night, unable to get the sleep your body craves.  thinking that the pain could be better mastered if you were inflicting it upon yourself.  isolation seems the best option as no one understands.  thoughts are clouded with the fog of pain. 

it feels like you fell smack on your face.  and maybe you literally did.

so what can you do about it? 

nothing.  just pick yourself up and keep plodding along.

and dream of that redeemed body that's promised when this world is over. 

one thousand

It was about 15 months ago that I took up the challenge.  The challenge to have fresh eyes for the world, eyes for beauty.  The challenge for thankfulness.

Could I really find gratitude for 1000 things in my life?

Life was hard.  I had been sick for months and unable to find an answer.  My doctors were in one state, my university in another.  I was barely making it through college, unable to get out of bed some days.  My prayers seemed unanswered.  God seemed far away.  Beauty seemed evasive.  Constant pain meant that my eyes were always focused on myself, on my circumstances.

In this time I read her words.  I read her own search for gratitude, for seeing the everyday common graces that really aren't so common after all.

I started counting.

1.  soft and soothing cello music quieting my soul
2.  getting lost in a bookstore and losing track of the real world for an hour
3.  prayer that comes from so deep within that there are no words - simply the aching and yearnings of a heart 

One by one, I added to the journal the graces I was experiencing.

32.  tear-stained bible pages
33.  rustling leaves in the wind 

The list grew.

118.  laundry flapping in the breeze
119.  repairing rather than starting anew
120.  a majestic tree spreading its limsb
121.  engagement stories
122.  reading books aloud to the borrowed child

I began to see God in the everyday.  I began to see echoes of Eden and glimpses of heaven.  Truer still, I learned to give thanks in the midst of hard circumstances and see beauty in the midst of pain.

408.  skirts with pockets
409.  a song for the day
410.  doctors who listen

Was I learning?  Yes.  Had I arrived?  Absolutely not.  Sometimes a week would go by where I would neglect my little gratitude journal, and worse yet, neglect my search for gratitude.  But I pressed on.

797.  being reminded that "there is no condemnation in Christ"
798.  bestowing on others the grace I relish
799.  growing in wisdom together

998.  reminders taht the best I have to offer is Jesus
999.  a clean kitchen
1000. learning familiar words in an unfamiliar language 

1,000 graces later, I still have not arrived.

Life certainly has changed since I began that list; I wish I could say that the tune of my heart is always a thankful one.  Instead, I can only say that I am still practicing gratitude each day.  But it has made a difference.  Weren't we commanded over and over again to give thanks?

"Do not be anxious about anything, but in everything by prayer and supplication

with thanksgiving

let your requests be made known to God"

Philippians 4:6

"Continue steadfastly in prayer, being watchful in it

with thanksgiving."

Colossians 4:2

"...give thanks in all circumstances;

for this is the will of God in Christ Jesus for you."

I Thessalonians 5:18

"For everything created by God is good,

and nothing is to be rejected if it is received

with thanksgiving."

I Timothy 4:4

Mayo Clinic Trip - Day 2

It was a long day.

Tomorrow will be even longer.

: /


Let's start with the not-so-fun parts about Mayo.  Today was exhausting.  Although we only had two appointments, we were racing back and forth all day.  Here's a quick schedule to give you an idea of what we went through.  (skip this next part if you're in a hurry).

**take shuttle to mayo.  talk to lady at information desk.  ride up elevator to floor 5.  walk into the next building.  talk to dermatology lady.  wait.  take elevator down about 6 floors.  walk two buildings over.  stand in line.  wait.  give five viles of blood.  walk back through the two buildings.  take shuttle to st. mary's.  get brunch.  walk two buildings over.  wait.  talk to receptionist.  fill out forms.  wait.  talk to nurse for a loooooooong time.  wait.  talk to nurse practitioner.  wait.  talk to receptionist.  wait.  ride up an elevator.  find out the shuttle isn't coming there today.  go down elevator.  walk back through two buildings.  take shuttle back to mayo.  ride up 5 floors.  talk to receptionist.  wait.  talk to receptionist again.  wait again.  ride down 5 floors.  wait and wait and wait.  board shuttle to go to hotel.**

When you're already hurting and weary, this schedule doesn't really help.  It is also emotionally draining to spend over an hour and half discussing symptoms and talking about how this has completely changed my life.  The medical professors want to know every detail so they make you relive moments that you wish you could forget.  An hour and a half of straight questions (even if they are asked kindly) makes you feel a bit like you are being interrogated.

now onto the good parts about today.  We met some kind people.  The lady in dermatology worked and worked to get me an appointment this week.  There is only one doctor in all of Mayo who works with my condition (that proves how rare it is, I guess!!) and he didn't have any openings.  We prayed and prayer and this lady rearranged things.  We have to stay an extra day, but Mom is hoping that it will be worth it.

The nurse who did my intake interview and exam was SO gentle with my joints and with her on-slaughter of questions, which I really appreciate.


We saw a young mom who had her hands full trying to board a shuttle to St. Mary's with a baby, a stroller, a medical file and a big backpack.  So we offered to help.  She seemed relieved when she accepted.  Incredibly, when we were on our way back to Mayo (hours later) she was on our same shuttle!  We really enjoyed her sweet spirit and getting to help her.


And finally, I had the kindest nurse do my blood draw this morning.  My goal is always to acknowledge my medical staff as human beings so I try to brighten their days, look them in the eyes when we speak and express gratitude for their work.  In the short time it takes to draw five viles of blood, we talked about all sorts of things.


My goal today was to see beauty in the midst of pain.  We slowed to enjoy the beautiful artwork lining the walls.  We read about the history of Mayo and St. Marys.  I updated my gratitude journal.

955.  Funny accents

956.  sweet baby girl waving chubby fingers

957.  tulips standing tall in the wind

958.  blueberry waffle cone ice cream

959.  discussing wedding colors

960.  one who goes above and beyond their job description

961.  Get Well Soon balloon brightening up a hospital

962.  hearing rain falling on the roof

963.  wall filled with detailed, coloring drawings of butterflies

Daily Log:

Hours at Clinic: 8.5 hours

Shuttle Rides: 4

Appointments: 2

There are days when the pain is overwhelming.

Yet worse than the physical battle is the mental one.

My mind regurgitates old thoughts, ones I thought I had dealt with.

this isn't fair.  is God actually good?  i am in this alone.  why me? my body and my soul ache, they long for refreshment.  will it ever be over?  no one understands  will i ever get answers?

I shut myself off from people who care.  Unintentionally, I shut myself off from God.

"Shall we receive good from God, and shall we not receive evil?"

I am quick to fatigue.  Quick to forget His gifts.  I long for a land that exudes milk and honey and grumble that He isn't providing.  But I am overlooking daily miraculous provision of manna.

He will work.

He will provide.

He will sustain.

It is not a question of whether He will work miraculously.

He can choose to provide a miracle of healing or choose to provide a miracle of grace.  Each are miraculous in their own way.

The real question is whether or not I will have eyes to see it.

dying is hard work.

I am learning to die.

In order that I might have life.

"For if you live according to the flesh you will die, but if by the Spirit you put to death the deeds of the body, you will live." romans 8:13

"Put to death therefore what is earthly in you..." colossians 3:4

"I have been crucified with Christ..." galations 2:20

My pride is insidious. My apathy is worse. The answer is easy: I need Jesus.

I need Jesus every moment of every day.

I need Jesus to keep me quiet sometimes (guarding me against saying unkind or untrue words).
I need Jesus to make me talk other days (speaking Truth or speaking praise).

I need Jesus to keep me from loathing my body (abhorring the constant pain).
I need Jesus to keep me from glorifying my body (forgetting that this is just a "tent").

I need Jesus to have a desire to love people (because some days, with some people, I don't).
I need Jesus to keep me from loving people more than I love Him (and value Him and His words supremely).

It is not easy. It is never finished.

Dying is hard work.