Running the race set before me!

   I love to run. :)  Yes, I can't run long distances yet...  But whether it's running to the mailbox at the end of our driveway, running from a restaurant to our parked car, running up our long flight of stairs two steps at a time, or running to our couch to read my Bible or a good book, it fills me with PLEASURE! :)  You may think, "What's so fun about running a little?"  Well, it's because I was on crutches for 6+ months last year!
   Before I had my SCS implanted, I went through grueling months of physical therapy, "learning" how to walk again.  It was painful!  At my first PT appointment, that's what I had to learn to do.  WALK.  I was like a toddler learning how to walk.  I had to walk for 1 minute, 3x a day for the first week...then 3 minutes the second week...then 5 minutes...8 minutes...until I could walk for 25 minutes at a time!  It wasn't a fast walk, though, because the CRPS pain was so severe.  And I couldn't do one tip-toe with my right foot no matter how hard I tried because it felt like a knife was stuck in the ball of my foot!  But now, after my surgery last September and still more months of physical therapy, I can now run, jump, AND tip-toe 20x at one time with my right foot!  God is good.  And He was good even when I couldn't walk, even when I couldn't tip-toe.
   So THAT'S why I love to run.  And when I run, I feel so free!  When I was thinking about that, I thought about how it's the same with my life as a follower of Christ.  Because Jesus washed away my sins when He died on the cross for me, the chains of sin no longer keep me in bondage.  I have been set "free in Christ Jesus from the law of sin and death" (Romans 8:2)  "For freedom Christ has set us free; stand firm therefore, and do not submit again to a yoke of slavery" (Galatians 5:1).
   On this journey, I don't want to "run aimlessly" (I Corinthians 9:26), I want to "run with endurance the race that is set before [me], looking to Jesus, the founder and perfecter of [my] faith..." (Hebrews 12:1-2)  My friends, join me in this race! :)  Keep looking to Jesus!

P.S.  This coming Monday, Jan. 30th, I will be having my third stellate ganglion block done.  I would greatly appreciate your prayers once again! :)

The Lord is my Strength

Though the fig tree does not bud 

and there are no grapes on the vines, 

though the olive crop fails

and the fields produce no food,

though there are no sheep in the pen

and no cattle in the stalls,

yet I will rejoice in the Lord,

I will be joyful in God my Savior.

The Sovereign Lord is my strength.

~Habakkuk 3:17-19

As I reflected on Habakkuk's words, I thought about how they relate to me.  Not in the sense of there being no grapes on the vines or sheep in the pen, but more like the following ways:

Though it's almost been a year since I was diagnosed with CRPS in my foot

and I'm now dealing with it in my hand,

though I'm 19 and haven't yet been able to continue my education after high school, like the rest of my graduating class,

though I can't play violin yet because of the pain and stiffness in my fingers,

though faced with the uncertainty of the future

and how there is no cure yet for this condition,

yet "I will rejoice in the Lord, I will be joyful in God my Savior"

BECAUSE

The Sovereign LORD is my strength.

Now, after reading a few of my "thoughs," you may feel sorry for me, but I don't want you to.  I just want you to know that God is still good in the midst of suffering, and I have made it this far because of the strength that my Sovereign Lord gives me for each day.

Yes, it's been hard, but I actually thank God for this experience.  If this never happened...

-I wouldn't know all my caring doctors, nurses, and medical assistants

-I wouldn't have been blessed with the friendships of my therapists and even the front desk receptionists

-I wouldn't have become as familiar with medical terms and treatments (which may prove helpful later on!)

-My relationship with Christ and love for Him probably wouldn't be as strong

-I wouldn't have had a chance to share the love of Christ with those at OHSU and PRA

-and the list goes on! :)

So rejoice with me that the Lord gives strength and is sovereign over every area of our lives!

What I do at occupational hand therapy...

Many people ask me what I do at OHSU occupational hand therapy, so I will tell you here. :)  Occupational therapists are very similar to physical therapists, but they also focus on fine-motor skills and desensitization.  Here are some examples:

• Usually at the beginning of my treatment appointment, I stick my affected left arm in this machine that blows out warm air and dried, ground corn husks as a way of desensitizing my nervous system.  Pretty cool. :)
• I'm a violinist, but I haven't been able to play for two months now.  So, one time, my OT spread thera-putty on this long plastic piece, and I had to hold it like a violin, while pressing my fingers into the putty and "playing" music scales like I'm pressing into my violin strings.
• Sometimes, I practice picking little things up (marbles, keys, buttons) with the finger that hurts the most and dropping them into this paper cup.  Occasionally, this can get pretty difficult to do because my fingers shake severely sometime!
• One of my favorite things to do at therapy is play catch with my OT! :)  It hurts my hand, but he makes it enjoyable!

As an ending to this post, I want to leave this poem with you.  May you be refreshed and encouraged by it!

"When you pass through the waters"

Deep the waves may be and cold,

But Jehovah is our refuge,

And His promise is our hold;

For the Lord Himself has said it,

He, the faithful God and true:

"When you come to the waters

You will not go down, BUT THROUGH."

Seas of sorrow, seas of trial,

Bitter anguish, fiercest pain,

Rolling surges of temptation

Sweeping over heart and brain---

They will never overflow us

For we know His word is true;

All His waves and all His billows

He will lead us safely THROUGH.

Threatening breakers of destruction,

Doubt's insidious undertow,

Will not sink us, will not drag us

Out to ocean depths of woe;

For His promise will sustain us,

Praise the Lord, whose Word is true!

We will not go down, or under,

For He says, "You will pass THROUGH."

by Annie Johnson Flint

Charging My Battery :)

Update: This past Friday, I had my second stellate ganglion block at the OHSU CPC.  And to my disappointment, the procedure supposedly didn't "block" again.  My doctor thought maybe the stellate ganglion nerve bundle is lower than normal which is why they can't get effective blocks...  But here's some good news! :)  I actually had a delayed reaction to it!  On Sunday, I noticed that my left hand, normally very cold, was really warm.  I even had sweat on my fingertips!  Also, the numbness and extreme sensitivity wasn't as bad!  So it looks like I responded well to the block this time! :)  Not sure yet if he'll want to do more of these again.  Right now, I'm testing this ketamine/amitriptyline topical gel that he prescribed to see if it will help the pain...

   As I write this, I'm charging my IPG (implantable pulse generator). :)  About every other day, my battery gets really low, so I HAVE to charge it.  So I strap on my St. Jude Medical belt around my waist and position the charger "wand" right against the battery in my back!  Charging takes about an hour and a half, so during this time, my stimulator's off which means I can't walk very fast. ;)  Interesting, huh?  You see, when my stim's on, I don't notice the pain as much.  So when it's off, the CRPS pain is far more noticeable.  To be honest, I don't exactly like charging because I can't move around quickly and the pain's definitely worse.  But as I think about this, having to charge is good for me.  I have to learn to be patient and "slow down" in this fast-paced world.  And, charging the IPG reminds me that I need to charge my other "battery"---spend time in God's Word on a daily basis.  Many times, I'd rather do something else, but I also want His Word to be "sweeter than honey to my mouth" (Psalm 119:103).  So as I thought about it, how can that desire grow?  By sitting at Jesus' feet.  From all that has happened, I know God is developing perseverance in me!  I still fall short many times, am still a work in progress, but from this trial, by God's grace I now realize this:

"Before this happened, I thought I had a strong relationship with God, but I was only in the meadow near the Cross.  After it happened, I went to the foot of the Cross and stayed there."  -from the autobiography I Still Believe by Jeremy Camp

"It was good for me to be afflicted so that I might learn Your decrees" (Psalm 119:71).

Reflections on this past year 2011

   As I write my first post on the last day of 2011, I reflect on this past year and how it changed my life.  It's been a wild ride of a journey!  Before I go into writing about 2011, you should first know a little about my childhood.  I was born with two small relatively minor birth defects, a hemangioma (a benign blood tumor) in the bottom of my right foot and a peri-auricular sinus near my ear.  When I was 10 years old, my right peri-auricular sinus became infected, so it had to be repaired at Emanuel Children's Hospital.  It was a quick fix, and thankfully, I haven't had any problems with it since. :)  But through my childhood years, the hemangioma made walking long distances quite difficult and sometimes, I had to tip-toe for days because it was too painful.  I see God's providence and goodness in these two little trials---He was preparing me for something harder to come. 

   At 17, I was ready for that hemangioma to be gone!  So, thinking it would be such a small "problem-free" surgery, I had it removed on July 8, 2010 at Doernbecher's Children's Hospital.  Going into that, little did I know what was right around the corner...  That night, my right foot starting burning like it was on fire!  It also felt like knives were being continually stabbed in my foot without rest.  No pain medication, no matter how much I took, relieved this type of pain.  Thankfully, I made it through the night without making a trip to the ER, and the next day was a little better. :)  A few weeks after that episode, I tried for the first time standing on two feet and taking a few steps.  But it was too painful.  I saw my doctor many times after that, but he couldn't figure out what was wrong.  He just thought I was healing slowly.

   A couple months after my surgery, I developed a hypertrophic scar which was like a rock in my foot!  Thinking that was the cause of my foot pain, I decided to have a cortisone shot directly in the scar to soften it.  So on March 11, 2011, I had that done, but to my great surprise, it made everything worse!  My foot became numb and felt dead.  I didn't know what was happening!  That's when I had to use crutches full-time.  By God's amazing grace, my dermatologists figured out what was wrong.  They told me I may have reflex sympathetic dystrophy.  My pediatrician confirmed it and immediately referred me to the OHSU pain center on the South Waterfront.  Left untreated, RSD can spread or worsen, so a medical board at the Comprehensive Pain Center quickly reviewed my case and got me in the following week!

   My pain management doctor's name is Dr. Brett Stacey who is also the chief medical director of the CPC.  He evaluated me and diagnosed me with Complex Regional Pain Syndrome which is the new name of RSD.  He's pretty sure this all started when I had that foot surgery.  Life became a whirlwind after that appointment!  Right away, I had to start taking this anti-convulsant drug called Gabapentin which is supposed to calm my nerves.  Two days later, I saw a pain psychologist and a physical therapist at OHSU.  In April, I had my first lumbar sympathetic block, but sadly, it didn't give much pain relief.  Those were hard months.  Being a senior in high school, I didn't get to really have a "normal" senior year.  I had to pretty much drop out of some of my high school classes because the pain was so bad and I was dealing with some drug side effects.  I even had to graduate from high school on crutches which was another frustration.  I had to continually surrender to God and wanted to let this strengthen my faith, not tear it down.  I never wanted to grow angry and bitter at God.

   In May, my CRPS spread to my left foot.  Things were getting worse, and because no amount of intensive physical therapy was helping, I ended up having to have a spinal cord stimulator implanted in my back in September.  It's been such a blessing!  I know it's from the Lord.  When my stim's on, it disguises some of the pain signals that travel from my feet to my brain!  It's so amazing.  My pain's not gone but it's much better, and I don't have to use crutches anymore! :)  Praise God!

   Life was starting to slow down, but something new happened that again rocked my world!  In November, I had a check-up with my pediatrician to receive some immunizations that were way overdue.  She also wanted to check my white blood cell count, so my left index finger was poked and squeezed to obtain a few drops of blood.  Well, I'm sure you can guess what happened...my nervous system got angry and now sends constant pain signals to my brain!  My CRPS spread to my hand and now radiates up my arm!  This has been a new struggle as you can imagine, but I'm still trusting God.  He knows what He's doing!  It now hurts to do simple everyday things like buttoning my shirt, holding my toothbrush cup because it's heavy, or even typing this post.  And I can't play violin now...yet. :(  So in addition to physical therapy, I now receive occupational therapy.  We're all praying that this and my doctor's treatment plan will reverse the condition!

   Throughout these past months, I have been encouraged and refreshed by following the story of baby Bowen, the son of Matt Hammitt (of the Christian band Sanctus Real) and his wife Sarah.  Bowen was born with Hypoplastic Left Heart Syndrome and had to have numerous surgeries to repair his heart.  This was a great trial for the Hammitt family, but what Matt Hammitt said struck me.  Instead of being bitter, he said he chooses to "trade in his pain for purpose."  When I heard that, I was, like, "Wow.  That's what I want to do!"  So, on this journey of living with chronic pain, I choose to trade in my pain for PURPOSE.  It's definitely not easy living with constant nerve pain, but I'm so grateful God gives grace for each day.  He will get me through this, no matter how long it lasts!  "And we know that for those who love God all things work together for good, for those who are called according to his purpose" (Romans 8:28).  The following verse is kind of like my life verse: "...it is my eager expectation and hope that I will not be at all ashamed, but that with full courage now as always Christ will be honored in my body, whether by life or by death.  For to me to live is christ, and to die is gain" (Philippians 1:20, 21 emphasis added).

   So on this last day of the year 2011, I just want to encourage people who read this to have the same mindset this coming new year. :)  Even if you don't have a painful health condition like me, may Christ still be honored in your bodies!  Soli Deo Gloria!

I hope you enjoyed reading this really long post. ;)  May all of you have a happy new year!