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!
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
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
Once Upon A Time
Well, I've finally decided to design a blog, partially because I've enjoyed reading other's blogs (who I will link to in a later post) and partially because I'm supposed to be writing a paper for class and I'd much rather procrastinate! To begin this first post, I will tell a bit of my story, starting with how I hurt my elbow up to my diagnosis.
Back in September 2008, I was doing this crazy thing that occasionally happens in college, called studying. After finishing studying for a biology test I had the next day, I stood up. Upon standing, I had shooting pain in my elbow and tingling in my hand. The pain continued for a few days and I started going to doctors: five medical professionals and a few months later and I arrived at an orthopaedic doctor who said it was cubital tunnel syndrome.
Like carpal tunnel syndrome, it involves a nerve that becomes compressed and pinched, but the cubital tunnel is in the elbow rather than the wrist. It also affects the ulnar nerve rather than the median nerve. Anyway, enough of an anatomy lesson; the doctor tried several conservative methods before resorting to surgery when my pain and tingling persisted.
The surgery was pretty routine - he would slice my elbow open about 7 inches, then move the nerve to the other side of the bone that stick out of the side of your arm called the medial epicondyle (thus effectively removing my ability to "hit my funny bone"). The surgery went well; I was placed under regional anesthesia, so my hand was numb for about 24 hours after surgery.
While the whole arm was numb, I felt great, but the numbness never fully wore off the ulnar side of my hand (that's the pinkie side). Though it was numb to touch, I started feeling a crushing pain in my wrist followed by stabbing pains in my whole arm. The pain continued, so the doctor decided to go in for another surgery to be sure nothing was blocking the nerve (basically, he went "sight-seeing" in my arm to check for mistakes).
That time I had general anesthesia that resulted in instant pain as soon as I was conscious. I was taking Norco (extra strength Vicodin) and it was doing nothing for the pain and nothing did until the surgeon prescribed some Neurontin, which helped the pain a little. The pain at times was so bad I'd want to throw up. That was mid-January 2009 and now the incision is healed up well, but my arm is still in great pain.
My hand sweats more than the other, but my elbow/upper arm feels cold. My hand is swollen some and the skin is stretched tight (my pinkie and ring finger knuckles seem to have disappeared, even when I make a fist). I can't move that elbow, wrist, or hand much at all without sharp pain. The pain is really weird and very hard to explain to doctors. Even stranger is what hurts - people walking by make a breeze that causes pain, so does even the slightest vibration, like someone sitting on my bed, or twitching their foot near me.
The orthopaedic surgeon thought it might just be nerve damage, and we would have to wait for the nerve to “calm down.” I wasn’t entirely satisfied with that diagnosis, so I went to a physiatrist in February 2009 who first mentioned CRPS (or RSD). I'm now living with this diagnosis and what it means. I'll write more later about what CRPS is, but it is time for me to stop procrastinating and get to my homework!
Back in September 2008, I was doing this crazy thing that occasionally happens in college, called studying. After finishing studying for a biology test I had the next day, I stood up. Upon standing, I had shooting pain in my elbow and tingling in my hand. The pain continued for a few days and I started going to doctors: five medical professionals and a few months later and I arrived at an orthopaedic doctor who said it was cubital tunnel syndrome.
Like carpal tunnel syndrome, it involves a nerve that becomes compressed and pinched, but the cubital tunnel is in the elbow rather than the wrist. It also affects the ulnar nerve rather than the median nerve. Anyway, enough of an anatomy lesson; the doctor tried several conservative methods before resorting to surgery when my pain and tingling persisted.
The surgery was pretty routine - he would slice my elbow open about 7 inches, then move the nerve to the other side of the bone that stick out of the side of your arm called the medial epicondyle (thus effectively removing my ability to "hit my funny bone"). The surgery went well; I was placed under regional anesthesia, so my hand was numb for about 24 hours after surgery.
While the whole arm was numb, I felt great, but the numbness never fully wore off the ulnar side of my hand (that's the pinkie side). Though it was numb to touch, I started feeling a crushing pain in my wrist followed by stabbing pains in my whole arm. The pain continued, so the doctor decided to go in for another surgery to be sure nothing was blocking the nerve (basically, he went "sight-seeing" in my arm to check for mistakes).
That time I had general anesthesia that resulted in instant pain as soon as I was conscious. I was taking Norco (extra strength Vicodin) and it was doing nothing for the pain and nothing did until the surgeon prescribed some Neurontin, which helped the pain a little. The pain at times was so bad I'd want to throw up. That was mid-January 2009 and now the incision is healed up well, but my arm is still in great pain.
My hand sweats more than the other, but my elbow/upper arm feels cold. My hand is swollen some and the skin is stretched tight (my pinkie and ring finger knuckles seem to have disappeared, even when I make a fist). I can't move that elbow, wrist, or hand much at all without sharp pain. The pain is really weird and very hard to explain to doctors. Even stranger is what hurts - people walking by make a breeze that causes pain, so does even the slightest vibration, like someone sitting on my bed, or twitching their foot near me.
The orthopaedic surgeon thought it might just be nerve damage, and we would have to wait for the nerve to “calm down.” I wasn’t entirely satisfied with that diagnosis, so I went to a physiatrist in February 2009 who first mentioned CRPS (or RSD). I'm now living with this diagnosis and what it means. I'll write more later about what CRPS is, but it is time for me to stop procrastinating and get to my homework!
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