Pride Goes Before the Fall

“God has a way of taking us through hard times and difficult seasons, wiping our tears, and then bringing back to us in an even greater way the things that we thought were lost to us forever.”- Roy Lessin

Wow, how true those words are in my life right now. Everything in my life was stripped away – my ability to use my hands for arts and crafts, computers, and even animals, my ability to study and do well in class, and my ability to be a care-free college student, taking advantage of every opportunity to have fun. It even, in a strange way, took away my friends, making them more like caretakers than friends.

A few weekends ago, I was at a women’s retreat where it occurred to me that my life greatly resembled Job’s life. Not only were the things I valued in life stripped away from me, but when they were, I turned to God. Turning toward God in a time of hurt is a wonderful thing, but when it is done in a prideful way, like Job, and like myself, it can be harmful. Like Job, I was proud of the fact that I refused to turn away from God in spite of what was happening in my life.

That weekend, I prayed and asked God to help me learn humility, to Him and to others. He took me at my word (I should have learned before, don’t pray things like that unless you truely mean them!). Two days later, I was struck down with humility. I was proud of the fact that I didn’t didn’t complain, didn’t cry, need help, didn’t ask for special favors, and could do things on my own. God took all five of those things I was proud of and stripped them away in one day. I won’t go into great detail, but I had to complain about my pain to the doctor (who didn’t listen), ended up crying talking to the nurse, had to ask for my roommate to come pick me up because I couldn’t drive home, ask my professor to let me take my test a different day, and have help taking a bath. That’s humility.

After humbling myself before God and before others, God began to build me back up. It is beautiful how He is slowly bringing me back to the things I thought I had lost. Sure some of it is totally different than how I would have imagined, but the beauty is that it is perfect. His plan is so much better than mine, that I wish I could remember that no matter how hard things seem, it is all working together for His glory. I lift everything up to Him, placing it in His hands, asking for His perfect will.

Time to Play Catch Up

Has it really been a whole month since I last posted? It hardly seems that long, yet in some ways it seems like even longer. On April 16, I went to the hospital for an outpatient placement of an epidural line in my upper back. For three weeks, I would “enjoy” the blessings of a continuous epidural infusion of two medications made to scramble pain signals. I know this is a little confusing, but here is the information I’ve collected about them…

What is a continuous epidural infusion?
Just as an epidural is given to pregnant women during childbirth, it can also be used in the treatment of pain associated with chronic pain. Epidurals traditionally pump morphine for pain relief but are often combined with or exclusively a combination of analgesics (though this is “extra label usage” meaning it isn’t approved by the FDA for this use). Though it numbs pain, it isn’t supposed to affect sensory or motor nerves, meaning you can still feel and move, but don’t experience pain.

An epidural is performed by inserting a needle in the epidural space around the spine. A catheter is then fed into this space and the needle is removed, leaving the soft, flexible catheter in place. This is done with the aid of either an ultrasound or fluoroscopy to insure correct placement. Following the insertion of the catheter, a contrast (kind of like dye) is injected to be sure the medication will spread well and where the doctor wants it. The epidural line placement itself may be slightly painful when performed, as it involves inserting a long needle deep into the spine so it is usually done with sedation and local anesthetic. Even more painful is the “tunneling” done under the skin from the shoulder to ensure that the line is not accidently pulled out.

After the placement of the catheter, the line is hooked up to a pump which is attached to an I.V. bag containing the medication. A specific rate is set for the patient to receive through the catheter directly into the epidural space. If additional pain relief is needed, such as during physical therapy, a “bolus” rate is set allowing the patient to push a button to administer more medication.

How does this help CRPS patients?
Because pain signals to the pain are blocked for several weeks (as opposed to a few hours in a sympathetic nerve block), the brain is given time to “reset” the pain cycle. It also allows for a strenuous physical therapy program to take place, allowing the patient to work on range of motion, strength, and desensitization. Typically a very strenuous physical therapy schedule is worked out, often several hours every single day.

Like so many things with CRPS, little research has been done to prove whether continuous epidural infusions help or not. There is also much debate over which medications are best to use in the infusion, how long to leave it in, and even whether it works. There have been a few cases reported where an continuous epidural infusion cured CRPS (or at least put it into remission).

What about Amber’s personal experience?
I had a continuous epidural infusion at the cervical level (upper spine) for three weeks. The doctor used two different analgesics, and no opioids. Apparently, placing epidural lines in the cervical spine is much more difficult than the lumbar spine, which makes sense because the vertebrae are closer together and are thinner, making the epidural space smaller, which increases the risk of hitting the spinal cord. I completely trust my anesthesiologist who did the procedure, he is very experienced, probably one of the most experienced in the state for this type of procedure. I’m not sure I would even consider this at all unless I was very confident that the doctor doing the procedure knows what he is doing because it can be very dangerous if not done well.

Following the placement of the epidural line, I had excellent pain relief, in fact, nearly all my pain was gone, to the point I could completely ignore it most of the time. At first there was some difficulty in achieving pain relief without limiting my ability to use my arm. I did physical therapy every week day for 2 hours while the catheter was in place. Prior to the epidural, my hand strength was 20 lbs, after a week of therapy it was 50 lbs. I also noticed a significant change in range of motion, going from a very limited range of motion to full active range of motion within a few days. A week or so after the placement, the pain levels in my hand began to increase so the rate was adjusted, which caused some problems including hypotension, balance impairment, pupil dilation/constriction, and light-headedness as well as making me feel “out of it” and limiting motor control. I would wake up in the mornings and not be able to move my elbow or shoulder (but could move my wrist and fingers). The nurses worked very hard to balance offer pain relief and attempt to reduce side effects at the same time. I feel the epidural was beneficial in that it allowed me to participate in a strenuous physical therapy program, which has had lasting affects. Once removed however, the pain has returned, but I still have greater range of motion and strength than I did prior to it.

The other problem with my epidural was the pain it caused in my back and right shoulder (because it tunneled to the right to aim the catheter at the left arm. At first the pain was unbearable, but slowly grew better (with the help of more medication). The placement of the line was done with local anesthetic, but I wasn’t sedated. As the local anesthetic wore off, pain levels in the back increased within an expected range, but after a few days, sharp, stabbing pain gradually grew worse in the area surrounding catheter insertion site. The pain worsened to the point it was distracting and made it difficult to concentrate. I decided to continue to try to function with the pain, which was continuous, but varied in intensity. Over time, it began to have a deep ache as well. The pain has decreased some since the epidural was removed, but only after my doctor gave me two trigger point injections. Though the pain is bad, I don’t think it is the CRPS spreading because the pain is a little different. I’m doing physical therapy for my back/shoulder as well as my arm.

Any other questions? Just ask!

Who Can Do It?

In reflection over my last post, I’ve realized that I failed to mention another huge part of the realization my lack of participation in worship made me realize. God is worthy and I cannot give Him what He deserves. It doesn’t matter if you have one working arm or a hundred, as humans we simply cannot give Him what He deserves.

It isn’t something I am lacking solely because I cannot worship with the accompaniment of bass sounding music, but something we as a human race, as all creation, lacks. Sure we can sing Him pretty songs, help others, or even lead others to Him, but He is deserving of so much more.

This fact never came to me before, I don’t know if I’m just dense or if everyone is oblivious to the wonder of our God, but even when I served God with my whole heart and my whole healthy body, I could not give Him what He deserves.

If God did nothing, He would be worthy of praise beyond anything I can imagine.

This realization may give some the excuse that if we can’t do it all, we should do anything to worship Him, but that is so wrong. I will go on praising my God with my whole life, even if it causes me pain to do it because He is so worthy of my praise!

How Can I Say Thanks?

During worship this morning, I stood gritting my teeth and holding back tears, desperately clutching my arm to my body in an attempt to protect it from the low bass sound waves ricocheted around my body. For some reason, my arm responds to low sound waves the same way your arm might if it was placed in a pair of vice grips, then tightened. As painful as it was, it wasn’t the pain that finally caused the tears to roll down my face.

“How can I say thanks
For the things You have done for me,
Things so undeserved,
Yet You gave to prove Your love for me.”

Standing there with worshipers singing around me in reflection of God’s glory, I was hit with the realization that I could not worship with others due to my pain. How could I say thanks to Him for what He had done for me when I couldn’t bear the music accompaniment? I couldn’t give my God the praise He deserves because of my physical pain. The emotional pain that ran through my mind is incomparable to even the longing to sleep on my left side. How can I not worship my God? Why would He create a disease that would inhibit the worship of Him?

As tears rolled down my face, I realized that I was missing the point. Worship isn’t about singing a song, though in American churches, that seems to be the accepted norm. Worship is giving praise to God with my whole life!

“Just let me live my life,
Let it be pleasing, Lord, to Thee,
And if I gain any praise,
Let it go to Calvary.”

It is the things I do every day, the fact that I choose to get out of bed, tell God good morning, and hop out of bed eager to discover what He has in store for me is worship. When I choose the hard road of servanthood, sacrificing my best interests for others, that is worship. I don’t need a tolerant hand to worship, in fact, I don’t need a hand at all, I can worship God solely through my actions.

1,000 Little Steps = 1 Big Step

I have felt like my life has gone no where recently. My spiritual life seems the same. My arm is showing no instantaneous improvements. I was starting to struggle with these ideas when God gave me a huge reminder.

In the United States 100 pennies are equal to $1. In countries where we still use the evil English system, there are 5,280 feet in a mile. At the same time, it is a lot easier to save one penny than to make a dollar. And everyone knows it is easier to take a 1 foot-long step than a mile-long step.

Likewise, it is easier to change one little step at a time, rather than take one giant step. As much as I admire those who stop habits “cold turkey,” studies have shown it is easier to alter habits a little at a time, why is it I expect my life to be any different?

Looking at the little steps, I see big difference in my hand. A month or two ago, I could hardly straighten my fingers, now I can wiggle them around in a fairly normal fashion. I struggled to make flash cards two weeks ago because my hand was too weak to hold them down while writing on them, but now I can jot on them without much thought. When I started physical therapy, I refused to touch a bin full of little pieces of plastic (nicknamed the “glass shards” because of how they feel to me), today I pulled out five little red tokens from the bottom after sifting through and finding them.

In America, we tend to look toward a “miracle cure” a special pill, a shot, or a procedure that will immediately fix everything. CRPS doesn’t have that, in fact there is no “perfection”, and it has taken me a long time to realize that. I was looking for a quick fix to instantly restore my health, when I should have been looking to a long, slow road for improvement.

God helped use this realization about the physical condition of the my hand to help me understand something big about my relationship with Him. Growing up in church, going to church camp and missions trips, I came to have a false expectation of my relationship with Him. I wasn’t satisfied with a penny, when I could gain a dollar at church camp, I wasn’t ready to settle for a foot when I could have a mile on a mission’s trip. What I didn’t realize was that it is the times between that really count. It is the little things I do everyday, like reading the Scriptures, praying, and spending time basking in the glory of God that I am growing. Looking back, I can see I’ve grown more over the past six months than I did at any church camp or missions trip, but it was one small step at a time.

Am I cured? Am I perfect? No, but I’m taking little steps toward improvement. And that is all that I ask, that I continue to head toward the goal, a little step closer each day. I need to continue without getting frustrated because I’m not growing enough and be content to grow a little step each day. Eventually, they will add up and I’ll look back and realize I’ve taken a big step!

Story Behind the Name

This post was written when my blog was called Out of the Flames

So, why the title of this blog? I wanted a title that portrayed a little of my story, who I am, in spite of the pain I’m in currently. Because CRPS pain is so often described as a burning pain (and I would agree, my arm often burns), I thought of a Phoenix who rises out of the flames. In spite of devastating events that threaten to burn my life into ashes, even when the doctor diagnoses me with a condition that destroys my life like an inferno destroys a house, or when my elbow burns with pain so bad I cannot concentrate, I refuse to succumb, I will rise up out of the flames and find a new life, though it may be different than what I’ve known before.

Though my plans for the future have been destroyed and my dreams devastated, I find hope. God is my creator, He made my nervous system, and He knows every intricate nerve that communicates with my brain. I know He didn’t make a mistake making me, He knew exactly what He was doing.

Even when all else is stripped away, I can trust that God knows exactly what He is doing in my life. I pray that this time will be one of blessings – growing closer to God and reaching out to those who are lost.

My goals in life are still the same – love God with all my heart, help those around me to know Him more, and reach out to those who cannot comprehend salvation, but my means of accomplishing my goals have changed. Just like Paul, I’ve been thrown in a circumstance that seems unpleasant, but I praise God because it gives me a story. It offers a way to meet people I might never meet, it blesses me with the ability to concentrate on God when everything else has faded into the background, it forces me to accept help and rely on other Christians, drawing strength from them when I am down.

Would I choose to have CRPS? No way, but I praise God for the blessing it is to me, even in the darkest of circumstances, I will praise my God because He is worthy. Though I know I face unrelenting pain, I say to God “bring it on, just so long as you use it to glorify you.” Blessed be His name, for He is worthy of endless praise.