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.

I Can Niko

The purpose of this blog isn’t for me to complain, but to comment on my life with a chronic pain syndrome, which of course includes pain. Even though pain is a part of my everyday life, it isn’t always the thing that most affects my life. Sometimes the emotional struggles are just as difficult as the physical ones.

I realized the other day that I had not used my left arm normally in more than six months. I have not folded my own clothes, zipped a Ziploc bag, or clapped my hands in half of a year. I remember being insisting that people know my correct age, in half-year increments, when I was a child. My half-birthday was a big deal to me each year. That half of a year was important, and now my half-“birthday” of my injury has approached and passed almost without notice.

At first, thinking of the things I’m missing out on were a huge disappointment. After all, there are so many things I can’t do and may never be able to do. I think of the brand new pair of boots in my closet that I can’t tie, the half-finished scarf on my knitting loom, or the new material I can’t quilt. I pondered of all the frustrations I have faced and will face, including toilet paper out of reach, containers I can’t open, and meat I can’t cut.

While I was mourning the things I felt I had lost, my friend asked me if I felt like I had accomplished anything by overcoming my current one-handedness in order to do everyday tasks. At this point I began to think of the things I’ve accomplished. I can put on my clothes without touching my left arm, I can type fairly well one-handed (about 30 wpm, compared to 90 wpm before), and I can open and I can do a little dance while carrying a backpack, a pillow, and a key card while unlocking and opening the door to my dorm and not touching my left arm to anything. Not just anybody can do these things (though I’d like to see them try), in fact I only learned them out of necessity.

Loosing one part of your body requires compensation from the other parts, including your brain. I love being creative and figuring out puzzles, and living with CRPS in one arm makes my whole life a puzzle. Each normal daily activity that could originally be done without second thought requires careful thought and consideration. Do I really need to do it? Can I do it myself? Is it worth the pain it might cause? Is it worth asking someone else to do it for me? Is it something someone else can do for me?

I’ve learned to cope with the life God has handed me, but that isn’t enough. I’m not willing to sit passively and feel sorry for my lack of a working arm, I’m going to fight for all I’m worth to keep my independence and learn to overcome the things life hands me with a positive attitude.

That brand new pair of boots in my closet, the ones I can’t tie? They are the same kind of boot I wore on a leadership survival type week out in Wyoming (the original pair had a stitching defect that resulted in large blisters, this pair is identical, but brand-new and defect-free). During that week, I did things I never thought possible. The week was called Niko, which is Greek for overcome, because of the many things we overcame during the week. I believe God allowed me to get that identical pair of boots as my new “Niko boots” because I’m going to continue to learn to overcome.

I still feel a longing for certain things I can’t do with one hand. The thing I long to do more than anything is curl up on my left side, how I used to sleep and sleep one, long peaceful night. At the same time, I can feel I’ve accomplished something, I’ve learned to overcome, I’ve learned to Niko my one-handed life, and that isn’t something to regret, but something to be proud of!

A Complex Explanation

Two months ago, I had never heard of Complex Regional Pain Syndrome (CRPS), but those four letters have changed my life. It is amazing how a few words from a doctor can make such a significant change in your life. Just as I had not heard of CRPS, I cannot assume you have, though there are more than 1.2 million people in the United States alone who are suffering with this disease formerly known as Reflex Sympathetic Dystrophy (RSD).

I’m writing about my CRPS not because I want to scare you by letting you know a little of the pain I’m in, but because I want to spread awareness. In spite of the fact that CRPS is fairly common, it isn’t well known, even in the medical community. Many doctors have not heard of CRPS before, which can be tragic for those who get it because treating it early can prevent worsening, spreading, and possibly put it into remission.

So, what is it? CRPS is a nerve disorder that causes severe chronic pain. Its name is actually pretty self-explanatory, if you look at each of the words in its name (some of this information is from the RSDSA web site).

Complex
means that physicians do not know why it develops or what causes it and there is no known cure. In spite of the fact that it was first mentioned by a Civil War doctor, it has only been studied recently, so there is very little known about it at all. They do know that it is a malfunction of part of the nervous system. Nerves misfire, sending constant pain signals to the brain. It develops in response to an event the body regards as traumatic, in my case the moving of my nerve in surgery. This syndrome may follow 5% of all nerve injuries, but can also be caused by a seemingly minor injury, such as a sprain.

Regional
means that it is usually contained to one section of nerves, in my case, the left arm. Though it is usually regional, it can spread to other parts of the body, including the opposite arm, legs, trunks, neck, or even head. The pain in my arm is the worst on the medial (inner) side of my elbow, but has spread to my wrist, hand, and a little into my shoulder.

Pain
seems pretty obvious, but CRPS pain is unique, it is said to be the most painful chronic pain syndrome, even more painful than cancer. I am extremely grateful my pain hasn’t gotten this bad, for the measures the doctors are able to take to help me with my pain, and the fact that God blessed me with a very high pain tolerance. Patients with CRPS often describe their pain as burning, throbbing, aching stabbing, sharp, tingling, and/or crushing.

Syndrome
indicates that CRPS doesn’t just cause pain, but other symptoms as well. Not only does it affect my hand, arm, and elbow, but it can cause problems with memory, concentration, attention, and word recollection. The pain often makes it difficult to sleep, and insomnia or lack of deep sleep is also common with CRPS, which complicates concentration further. Imagine trying to concentrate or sit still while someone rubs rough sandpaper on your entire arm. Some days, even wearing a shirt, a gentle breeze, or slight vibrations cause pain in my arm worse than rubbing sandpaper on my arm. Some other symptoms may include swelling, abnormal skin color changes, skin temperature, sweating, limited range of movement, or movement disorders.

What to find out more? Visit one of these web sites:

Reflex Sympathetic Dystrophy Syndrome Association
International Research Foundation for RSD/CRPS
Reflex Sympathetic Dystrophy Hope