Sunday, May 20, 2012


Stagnation is rarely good.  Stagnant water stinks and is a haven for bacteria.  I've heard it said that some sharks will die if they stop swimming, or stagnate.  Likewise, if people stagnate, we begin to stink, and in some ways, we even die.

Don't know about you, but I'd rather not stagnate!

In the interest of always moving forward, always reaching up and on, sometimes I need to shake things up a bit.

In the summer time, I set up a typical backyard kiddie pool for my punkins.  The flattest part of our yard is under a big, beautiful shade tree.  But this shade tree drops leaves, seed pods, and bugs into our clean, cool water.  The results aren't pretty.  In no time at all, that crisp, cool, straight-from-the-hose water is green, slimy, and smells awful.  Yuck.  Seriously, a B-horror movie monster could live in there.  In order to clean the pool and return it to appropriate playability, I either have to add chemicals or dump the whole thing out, scrub the pool, and refill it (and repeat often).  Neither solution is easy.  I worry about chemicals in water my young kids will play in and likely, despite my best efforts, drink.  But dumping, scrubbing, and refilling wastes tons of water and time, not to mention the lost play time.

Addressing stagnation in my life is equally challenging.  It's painful.  It requires work.  And there's risk.  But remember the alternative?  I don't want to be a dead shark.  Or a slimy pool.

So in an effort to avoid stagnation, I sometimes seek ways to change and, hopefully, improve.  But sometimes change finds me.

Several weeks ago, during a small group lesson at the home of our friends Jeremy and Tahlia, we were discussing prayer.  Jeremy said that he was beginning to grow uncomfortable with some of the "typical" prayers we lift to God.  When someone asks if anyone has any prayer requests, the most common things we mention are health-related: healing, safety, relief from pain.  These are not bad requests.  But what is the point of these prayers?  What are we seeking to gain?  These prayers may be a little limited in scope.  Jeremy said he was beginning to understand that we need to be praying that God will be glorified.  So rather than merely praying for healing or relief from pain, we need to be praying that God will be glorified through our illness or injury, surgery or hardship.  Praying for healing is not bad, but it's not the end of the story.  We need to reach beyond ourselves, beyond our physical, mortal bodies.  We need to be praying that God's glory may be known through our experiences and how we respond to the challenges of life.

This really impacted me.

After my last post, many of you commented that my attitude and joy were really impacting you.  I'm glad!  But I want to be clear: my attitude, my joy, are not from me.  You see, I started praying differently after that small group conversation.  While Jeremy was sharing what he was learning about prayer, God reminded me of an interview I had heard on the radio years before while driving to work at the fantastic East Town Mall in Knoxville.  The lady on the radio was saying that she thanked God for her cancer.  A statement like that is something your ears perk up to.  She went on to explain that if she didn't have cancer, people wouldn't notice her, wouldn't "hear" her.  Instead, battling cancer gave her a platform and an audience.  Thus her life had an impact.  And God was glorified through her cancer.


As I drove across the train tracks that afternoon, I remember praying, "God, if I ever get cancer, I pray I can glorify you through it the way she does.  I pray I can see it as a blessing."

I don't have cancer.  But I do have an incurable and largely untreatable genetic connective tissue disorder, which has led to another incurable and largely untreatable autonomic nervous system disorder.  When I was undiagnosed, I prayed a lot for answers.  I thought I was crazy, that everyone feels this way, that for some reason I was just too weak to take it.  I was losing my mind.  God did bless me with answers (thankfully!), but also with the opportunity to glorify him through this journey.  How I respond to the bad days, to the pain, to the limitations and challenges can either look exactly like everyone else in the world: woe is me, life is so hard, this is unfair, there's so much pain.  Or my response can look different, odd, noticeable.  The world can look at how I respond to illness and say, "Wow, imagine that!  Imagine thanking God for illness!"  Maybe the world will see it as odd.  Maybe I'll seem crazy all over again :)  But maybe they'll wonder what my secret is, how I can still smile in the midst of my pain and hardship.  

My answer is no secret.  The answer is 


That night at small group turned my prayer life upside-down.  Since then, whenever I have a bad day, I still hurt, Iget discouraged, and sometimes I even curl up and cry.  But God has opened my eyes to all the blessings.  When you seek to have purpose in your pain, the pain seems less, and the blessings seem more.  So I can smile :)

Friday night I fainted in Wal-Mart.  It was scary, embarrassing, and generally unpleasant.  But I was also very blessed: 
  • Nathan was in the store and was able to come to my aide quickly.
  • Oren stayed by my side and didn't run away.
  • An associate found me and offered help.
  • I made it to a shelf of tote boxes and slid to the ground, avoiding falling hard or hitting my head.
  • And sitting the 45 minutes until my head cleared enough to go home gave me time to read from the Bible app on my phone.

Here's what I read:
Paul and his companions traveled throughout the region of Phrygia and Galatia, having been kept by the Holy Spirit from preaching the word in the province of Asia. When they came to the border of Mysia, they tried to enter Bithynia, but the Spirit of Jesus would not allow them to. So they passed by Mysia and went down to Troas. During the night Paul had a vision of a man of Macedonia standing and begging him, “Come over to Macedonia and help us.”10 After Paul had seen the vision, we got ready at once to leave for Macedonia, concluding that God had called us to preach the gospel to them. (Acts 16)
This has always struck me as odd.  Here Paul and his companions were trying to go, to spread the gospel.  And God said no.

Sometimes God's answer is no.

Maybe that means we aren't healed.  Or the pain won't cease.  Or we'll even be allowed to die.

But that's not the end of the story!

When Paul and his companions were stopped from going where they planned to go, God sent them elsewhere.  Paul had a vision, they met Lydia, healed a slave girl,

and wound up in prison.

Looks bleak, right?

But that's not the end of the story!

God freed Paul and Silas from their chains, but they stayed, and they sang God's praises and ministered to the jailer and led him to Christ.

When the answer is no, look for the blessings, the opportunities, and glorify God.  When Shadrach, Meshach, and Abednego faced the flames of the furnace, they said that their God was mighty enough to save them, but that even if he didn't, they would still praise him.

God may save you from your hardship.  You may find healing.  But even if you don't, God is still good, and maybe there's someone you're supposed to impact through your hardship.  When you're facing the furnace, can you still praise God even if his answer is no?

I don't want to be a dead shark or a slimy pool.  I don't want to stagnate.  God turned my prayer life upside-down, and in doing so, turned my life right-side up.  Change is rarely easy or comfortable.  But we need change.  Without it, we stink.  And no one likes the stinky kid!

So when you pray, pray for God to be glorified, even when the answer is no, even when you face the furnace, and that if you find yourself in jail, you'll sing his praises and preach the gospel to your jailer!  May God be glorified through your weakness.  God made us limited so the world can see he is limitless!

Thursday, May 17, 2012

An Update on My Health

Some of you have asked for an update on my health, and I can't find a way to do notes on Facebook anymore (except that they now let you write a status the length of a Super-Mega roll of toilet paper, which might be a tad obnoxious), so I'll write it here and link it on Facebook for those of you who are interested.

Slowly over the last few years (maybe longer), I've developed some symptoms that extend beyond even the bizarro-world of Ehlers-Danlos Syndrome.  Around Christmas, enough of those symptoms began to overlap that I realized I might be facing a new problem.  A month ago I saw the doctor, and he ordered some tests to rule out more obvious causes like infection or inflammation.  Those tests were all normal.  Which is good...and bad.  I went back to the doctor today, and he confirmed my suspicions: I have autonomic nervous system dysfunction.

I know, I know.  You're asking, "What in the world is that?  What does that even mean?"  Well, in a nutshell, it means that the things my body is supposed to regulate automatically aren't being regulated.  That includes heart rate, temperature, blood pressure, circulation, aspects of vision and speech, and the movement of the digestive tract, among other things.  The most obvious symptoms I've been experiencing include:

  • a disturbing lack of ability to poo (so much so that I'm now blogging publicly about it)
  • numbness and tingling in my hands, arms, feet, and legs
  • trouble speaking; my mind knows what it wants to say, but my mouth won't obey
  • irregular heart rate
  • irregular blood pressure
  • feeling faint or dizzy
  • fevers

So here's what that means for me.  I've been taking medication to regulate my BP and HR for a couple years.  That's already covered.  It will still fluctuate, but the meds will mostly keep it under control.  I now need medication to keep my GI system moving.  No meds, no movement.  We can't do anything about the fevers, dizziness, numbness, etc except to accommodate those things in my lifestyle and try to deal with them.

Encouraging, right?

I'm fortunate to have a truly amazing doctor.  He took a great deal of time with me today and demonstrated genuine compassion and concern.  He's working on getting me into a specialist, but that will likely take several months.  He's also trying to help me know what to do to manage my life.  He's the doctor for my whole family, so helping me deal with my conditions involves helping me take care of my life without sacrificing my family's well-being.

Now how does this impact my daily life?  I sought a transfer to a less stressful position at work but was denied.  I'm doing what I can to make my current position a little easier for me to manage.  And I'm grateful to have a job.  But it's hard.  My job isn't exactly killing me, but it is a huge part of why I keep getting worse instead of better.  My body just can't work that hard, with that much stress, every day and keep going without consequences.  I'm causing bits of damage every day that just build up because my body doesn't have a chance to rest and heal.  Don't get me wrong--I'm extremely grateful to have a job, and a job I love at that.  The great news is that I can provide for my family and continue my career.  The bad news is just that I might not physically be able to sustain this...even though I have to.  We cannot afford for me to not work, and I'm our insurance carrier, so this is it.

So how do I make it work?

  • Family: Nathan is an amazing husband.  He is compassionate, patient, supportive, and strong.  He takes such great care of me.  I am so fortunate.  My kids love me, challenge me, delight me, and encourage me.  My parents, siblings, and Nathan's family are all so encouraging and supportive.  Our boys also have the best baby sitter imaginable.  She considers them her grandkids and us family.  I am blessed.
  • Friends: I have the kind of friends that would be here in a heartbeat if I asked for help.  In fact, a friend was willing to leave her own job early to keep my kids so I could go to my appointment today.  Thankfully she didn't have to, but knowing she was willing...that's humbling. 
  • My needs are met: I have a home, food on the table, cars to drive, insurance, even (meager) savings.  
  • Balance: Some things matter.  Others don't.  A dirty floor will still be dirty tomorrow, but maybe rest today is more important.  Or dessert with a friend.  Or snuggles with my kids.  Or a date-in-night with Nathan.  I have HAD to learn to let some things go.  And that's OK.  And in a pinch, those family and friends I mentioned above are around to lend a hand.
  • Joy:  Joy is a choice.  It's different than happiness.  We FEEL happiness.  It happens to us.  But joy is something we choose and claim no matter what happens to us.  And I choose joy.  Even on a bad day, I can count my blessings and smile a genuine (albeit tired) smile because despite it all, God is still good, I am still blessed, and when my head hits the pillow, I am satisfied I've given my best today.
  • Faith: Listed last here, but not last in importance.  God sustains me.  When I am not enough, he is.  Even when I'm struggling, God has not left me.  He loves me.  And he has a purpose in all of this.  Maybe his purpose is that I impact someone else through my journey.

There ya go.  I never intended this blog space to be entirely about my health.  There are enough health blogs out there already.  Instead, this is just a place to share what it means to be ME, and yes, my health is a part of that.  There are lots of people in this world battling various forms of chronic illness.  I've noticed that a lot of them are defined by their conditions.  They focus on their symptoms, medications, appointments, and challenges to such a degree that we don't see the person anymore, just a diagnosis.  I commit to being more than that.  I am a person.  I am transparent--what you see is what you get--and I commit to living life as an open book.  I will not claim to have it all together (because I don't), to have all the answers (because I don't), or to know what tomorrow will bring (because I don't).  But I'm learning a lot on this journey, and I'm willing to share it all, the good and the bad.  And that's what this little blog space is all about.

I appreciate your prayers and support, but please remember, I'm OK.  No need to worry about me!  I promise I'm still smiling :)