Chronic Phoenix

The Liebster Award

2012-01-27T20:13:00.002-05:00

I am incredibly honored to have recieved the Liebster Blog Award from Chris Dean who blogs at Life Your Way. "Liebster" is German and means favorite or beloved. The point of the award is that it is given to blogs that are somewhat less known. I've noticed this among other blog awards around, but never expected to receive one myself.

I'm even more surprised by the kind description she used to describe me and my blog: "I haven’t been following her long, but Amber is a fun-loving, positive person with a big heart! Don’t believe me? Check out her post 'Crazy Sock Day!'"

Now it is my turn to pass this award to others who are so deserving!

Here are the rules for this award. Upon receipt of the award, one is to:
1) Link back to the blogger who gave it.
2) Paste the award on the blog.
3) Choose 5 blogs to pass this award to (they must have fewer than 200 followers).
4) Let the recipients know about their nomination by leaving a comment on their blogs.

Written by Grace, More than a Pair of Chutes is a blog I thoroughly enjoy reading. As a mother of three, she loves small-scale farming including chickens she graciously shares many pictures of so I can enjoy them (since I've secretly wanted chickens for a long time). She is also an amazing cook/baker and shares some fantastic recipes on her blog.

Maria at Going Down Swinging has a strong influence in my life. Struggling with her own battles with chronic illness, she refuses to give in and continues to fight back. She has chosen to make healing and a positive attitude a way of life. Though we may not agree on all points, she is an inspiration to taking the best care of my body as I can!

Another blog I consider to be a huge motivator and encouragement when I'm struggling is Caf of Rellacafa. She chooses to use positive coping skills to deal with her life of pain and flares. I especially admire her determination and insistence to fight against being controlled by pain.

Though I know she can't pass the award on right now, Mindy of Reflections is very deserving of this award. Her blog is an encouragement, but also tells about life how it really is - the bare, naked truth. She doesn't sugar coat everything and this allows her to have incredible, encouraging insights thanks to her strong relationship with God.

Last (but certainly not least) I have to mention the blog that allows me to laugh at my own pain. Every Sunday, RSDiary posts a humorous look at life with CRPS. Between "imps of pain" and just plain silliness, her blog is always worth a laugh!

Thanks again to Chris Dean for the award!

Crazy Sock Day!

2012-01-24T12:11:00.001-05:00

Maigee and some of my crazy socks

A year ago, a bunch of my friends who have CRPS/RSD had these pictures of wild socks on their Facebook pages. While seeing funky socks on a friend or even two's profiles might not be enough to make me think twice, the fact that nearly all of my CRPS friends had crazy socks and a bunch of CRPS'ers who I wasn't friends with also had crazy socks on their profile. My curiosity was piqued!

This was my introduction to an amazing girl named Melanie. A girl who at age 10 got CRPS in her foot as a result of a stilt accident at a birthday party. As I got to know her and her mother, Laurie, I was amazed at Melanie's positive attitude and greatly inspired by her strength and courage with which she faced her battles with pain.

My socks for Crazy Sock Day!

On the anniversary of her original injury that caused CRPS, Melanie and her family started "Crazy Sock Day." As part of her physical therapy, Melanie was challenged to wear crazy socks for desensitization. It became her unique "thing" and is the motivation for me to wear a crazy sock under my own AFO brace. Annually, people all over the world wear crazy socks on January 24 in honor of Melanie's own struggle and to raise awareness for CRPS.

Unfortunately Melanie's introduction to pain didn't end with her foot, her CRPS spread internally, causing something called Gastroparesis or paralyzed stomach. Basically the stomach stops functioning and food may sit in it for hours or days. This causes great pain, discomfort, nausea, and vomiting. Think of having the perpetual flu! While my own digestive issues make me more aware of what she is going through, I can still eat and enjoy the food I like.

Melanie had a NJ tube placed to help allow her to get nutrition by skipping the stomach entirely and feeding supplements directly into her duodenum (the first 10 inches of the small intestine). Though this was incredibly beneficial, it was also challenging as she had a "strange" tube coming out of her nose. At the age of 12 now, I can't imagine how difficult this would be to face not only friends but also strangers who just don't understand why such a "normal" looking kid would need a tube.

Today, on the 2nd Annual Crazy Sock Day, Melanie is undergoing surgery to have a gastric simulator placed into her stomach to help her digestive system to work a little more normally. I pray the most success and decreases in pain with her new friend "Robie." Will you join me in prayers, well wishes, and wearing of crazy socks?

Another way you can support people all over the world with chronic pain and illness is to join in Melanie's Crazy Sock Auction for Spirit Sparkplugs. Spirit Sparkplugs was started by a friend, Kylee of New Zealand to send care packages, cards, and more to kids and adults with chronic illness all over the world. They have been a huge blessing in my life. All proceeds from the sock auction will go to Spirit Sparkplugs. Just view the photo album, find socks you like, and make a bid by commenting on the picture. Click here to see the album with all of the socks. Be sure to check out the socks I donated - 4 brand new mixed up socks (none match the others since my socks never match).

For more information or to apply to help or recieve from Spirit Sparkplugs, be sure to check out their web site.

Be sure to check out Melanie's amazing story (written a few weeks after initial diagnosis of CRPS) in her book. Then once you've read that, check out her more current updates on her blog!

The New and the Old

2011-12-29T00:41:00.000-05:00

This was posted a bit early so I could submit it to the Chronic Babe blog carnival, enjoy!

It is almost that time of year again; the time of year where people are looking forward to the new year and reflecting on the old one. I have an even greater reason to do this. December 31, 2008 was the day my surgery on my left arm that caused the start of my CRPS. I was mostly drugged up and my arm was still numb from the regional anesthetic for that evening (I joke this is the only time I'll ever be high on New Year's), so I consider January 1, 2009 as my "CRPS anniversary."

Three years. Over the past years, I've survived ganglion blocks, epidurals, trigger point injections, medications, pain rehabilitation, hospitalizations, and countless doctors, nurses, x-ray techs, and other medical professionals. Each procedure was an opportunity to learn new things. I've learned so much through these experiences.

Looking back, I can't believe I've come so far, and yet as I look ahead, I see so many more things that I have yet to face. More appointments, diagnoses, developing symptoms all face me as I deal with my day to day life. But I refuse to give in and let them take over my life. I'm me first, being someone with chronic illness is just a small part of who I am, though I must admit, it has contributed to other areas more than I could have imagined.

So the blog has a new look, I've decided to change the title to Chronic Phoenix as my pain is not just limited to the CRPS anymore. I'll explain more of the problems I'm dealing with some other time, for now, just know that the title represents my desire to be positive and rise above the problems I face when the "fires" of chronic illness sweep through my life.

Today, I'm going to do what people all over are doing in celebration of the new year, make a resolution. My resolution is to encourage others who struggle with pain and to maintain a positive attitude about the struggles I face. For the next year, as I continue in my neuroscience program, I hope to continue my research about CRPS and to continue to provide information and support to others on my web site and my new Facebook page for people looking for a positive, encouraging look at life (click on the link to the right). My final resolution is to get this blog back up and running and talk more about my day to day life with chronic illness in hopes to educate and encourage!

I'd love to hear if there are specific things you'd like to hear about, if you want to know something, please leave a comment!

Maigee's Rules of Life

2011-02-28T21:30:00.000-05:00

1. Bugs are really, really fun, but you have to watch for the stinkers and the stingers.

2. Car rides mean fun smells.

3. Amber thinks she can sing, she can't, but she still tries in the car.

4. Might as well settle down and take a nap at the bookstore, Amber will be there forever.

5. Drinking lots of water right before bed means that Amber will be half coherent when letting me out at 3:00 a.m.

6. Cats are fun until they just lay there doing nothing, but rabbits scratch back.

7. Guinea Pigs serve no purpose other than to make interesting squeaky noises.

8. If I drop the bone Amber gives me to carry at the pet store, chances are, I won't get it back (for a few days, anyway), if I carry it to the register, then out to the car, I can chew it on the way home.

9. If I want to be petted, and Amber is in bed, but reading or journaling, rolling around on her hands/feet is considered being petted.

10. Best way to make Amber laugh - roll around on the floor making "aurgh" noises, while randomly chewing on a foot.

11. Amber may give me homework to chew, but her professors don't like that much.

12. When playing fetch, if you run back to Amber, you have to run after the ball again because she takes it away and throws it again most of the time. It is easier to run off with the ball, lay down, and enjoy chewing on it until Amber decides to make me bring it to her.

13. Amber teases me when I snore, but she snores too sometimes.

14. Cactus aren't good chew toys.

15. Toenail cutting hasn't killed me yet, but just to be safe, I should make lots of dying-dog-noises. If I squirm it just takes longer, so just the noise, no squirming.

16. Making puking noises is a great way to get Amber to stop the car fast.

17. If the microwave is making popping noises, there is a fair chance that I'll get a special treat of the only human food I get - popcorn. Either that or Amber left metal in it.

18. Snow is full of fun games to play. But summer means swimming in the creek.

19. If outside when vest is removed, it is required to roll around in the grass or snow immediately.

20. Snow balls are super fun to chase, but very, very hard to pick up.

21. Corn husks are the bestest toy - ever!

22. The elevator at school is an attention box - Amber pets and/or talks to me when shut inside.

23. It is fun to play in the creek, but impossible to catch the minnows. And crayfish pinch.

24. Amber has fun in the swimming pool. I do not. So I shouldn't jump in, even if she sounds like she is having fun.

25. Amber's home made dog treats aren't very good, she kinda burnt them. But they make a nice mess when I crunch them some, then leave the crumbs all over.

26. If Amber is sweeping the floor, it is really fun to run through the pile she has made and track it all over the floor (and it usually gets me some outside play time).

Pain, Pain, Go Away!

2011-02-13T19:35:00.000-05:00

I haven't updated my blog in quite some time! Since my previous update, my right arm has been healing very well. It is still weak, and some pain, but it is nothing compared to the pain in my left arm after surgery. I have gained much strength and the sensitive pressure ulcer is completely healed over, nothing but an ugly scar left. I went to my orthopaedic surgeon last week and he told me he was kicking me out of his office. I told him that I never wanted to see him again - at least not in the office! I'm so grateful that I have been blessed with such an amazing orthopaedic surgeon, I can't imagine what may have happened without him. I will recommend him to anyone in a second.

Unfortunately, my health has gone downhill in other areas. A couple of weeks ago, I had a sudden onset of severe abdominal pain. After confirming it wasn't appendicitis, the doctors suspected either an ovarian cyst or Irritable Bowel Syndrome. Just what I needed, an additional medical problem to add to my list! I have an appointment with a gastroenterologist in a few weeks, so we will have to see what he thinks is our best course of treatment.

I'm just so sick of all of these health problems. So tired of being tired all the time. Frustrated with all of the appointments I have to keep just to keep myself going.

An Orange Frisbee

2010-12-31T12:16:00.001-05:00

I was cleaning my closet and found an orange Frisbee from TUFW. Out of all of the things I found cleaning my closet, this cheap piece of plastic didn't seem like much, but it brought me to tears. Not so much the toy, but the memories attached to the toy.

See, I got this frisbee on September 27, 2008. The day is about as important as an orange frisbee to others, but for me it was my last day of freedom. It was a pretty typical day, in fact, I don't remember much, except that we had some sort special dinner where we got free frisbees. My friends and I took them out to a central, grassy area of campus and began to toss them around. It was fun, but not anything significant - yet.

The next day started out normal, I went to church, went to lunch, then spent the afternoon studying for an upcoming biology test. Then something happened that changed my life. I stood up, pushed off of my desk with my left arm and my arm exploded.

Three months later (which was exactly 2 years ago today), I was coming out of surgery, with the hopes that the numbness and tingling and pain that had persisted in my hand would finally subside. Sure, there would initially be increased pain from surgery, but that would subside and I could go on with my life.

Not so much, the pain continues today, limiting my activities. I've done fun stuff since then and have actually accomplished far more than I ever thought when I was first diagnosed with CRPS. But tossing that frisbee around the yard was the last thing that I remember doing that was fun that I did without thinking of if it was going to increase my pain, cause my CRPS to spread, or if I could somehow injure my CRPS hand. It was the last time I did a physical activity with my friends without thinking about it as something significant.

Now, heading into a new year with the huge unknown of what is going to happen with my right "good" arm, I'm wondering if December 6 will be remembered as the last day that I could use my right arm. The last day that I could easily do activities with both hands. The last time I could write my name without thinking about it, the last time I could throw something and have it land somewhat close to where I wanted it to go, the last time I did art, the last time that I could open a container.

My life is filled with what ifs...

College and Essays

2010-05-25T11:20:00.001-04:00

I'm reapplying to college to continue my education at a community college in the fall. It is by far less expensive than the college I was at before and I'm sort of excited about classes, but more excited about the fact that it brings me one step closer to my dream of being a nurse. In the process of getting ready, I have recently written an essay for a scholarship about my current goals. I thought that I would post it here for others to read.

“Painful as it may be, a significant event can be the catalyst for choosing a direction that serves us more effectively. Look for the learning.”

– Eric Allenbaugh

I wasn’t expecting the pain that changed my life, my dreams, and my hopes, but looking back, I can appreciate it. September 28, 2008, I was sitting at a desk and stood up and experienced pain in my elbow. This started a journey that continues today as severe chronic pain syndrome that I have to live with every day.

Though it would be easy to give in to the pain, I refuse, instead allowing it to act as a catalyst to propel me forward in life. Growing up, I changed my dream job many times, but never did I dream that I would be in nursing school. Yet, I have applied to and been accepted into the pre-nursing program at a local community college. I have a dream to someday work as a nurse in doing research, in a chronic pain rehabilitation center, or in a pain management doctor’s office.

The dream began as I met nurses throughout my treatment for my pain. Nurses cared for me, helped me, encouraged me, and told me to press on in spite of the pain. It was the nurses who changed my life and I realized that I had a passion to pass on the care that they gave me. I have always loved science and began to enjoy researching all aspects of pain management.

Would I choose the pain that has changed my life? Not at all! But I do allow it to continue to motivate me to continue on the path where it has put me. I dream of one day changing the lives of patients, just as the nurses I have met on my journey have changed my own life. College is the place where I will learn the skills I need to make this dream a reality.

Living Beyond the Pain

2010-02-28T18:58:00.000-05:00

So far, I have learned many things from CPRP. But one of the things that is most influential to me is the idea of living beyond the pain. I once read a quote somewhere that said "Pain is inevitable, suffering is optional." Only now am I really realizing how true that is for me. Pain is something that I'm going to have to live with for the rest of my life, but that doesn't mean that I have to suffer for the rest of my life. I can choose to live a life, even with my pain. Pain may limit me in some ways, but I can choose to overcome it. Pain isn't able to make me do anything, I choose to allow pain to affect my life. The thing is, it really is a choice. When I wake up each morning, I can choose to allow pain to make my life miserable or I can choose to be joyful and have fun in spite of the pain.

Something very interesting about the program is that we aren't allowed to talk about our pain, like to complain about how it feels. We can talk about how it makes us feel, but no complaining. If we complain to the staff, they completely ignore us. If we complain to other people in the program (about 16 others), they respond with something like, "yeah, so, you've got pain, so do I." When everyone around you is feeling the same thing, you realize that you aren't alone. By not focusing on the pain, the pain is easier to ignore and I actually feel less pain. It also allows me to have more mental energy to spend on things other than just pain all the time.

The idea of living beyond pain is so refreshing to me, but I would like to ask for some help from everyone who knows me. If my arm was amputated, I wouldn't go around and expect everyone to ask me about it and I wouldn't complain about it all the time, I would learn to live with it. I might need some accommodations, but I would learn to adjust. The idea is that we must do the same thing with pain. When pain is acute, it is okay to complain, however when it is chronic, you don't get anywhere and you aren't able to accomplish much when you constantly exhibit "pain behaviors" such as wincing, crying, limping, complaining, etc. I've learned that not only is it bad for the person with pain psychologically But it can also really affect the way people around you respond and interact. It can ruin relationships, especially when there is no cure and constant complaining makes the person feel helpless about the fact that they can do nothing.

I have a few favors to ask of you. First of all, could you help me by not asking about my pain. When you ask about it, you may just be trying to be kind, but it reminds me that I have pain and actually makes it worse because I'm thinking about it. Besides, I really do get sick of answering the question. You can ask how I am, but expect me to answer how I am emotionally, not physically. Don't be surprised if I answer "wonderful" or "great." It doesn't mean that I no longer have pain, it just means that I'm having a good day, in spite of the pain.

I guess what I'm asking you to do is to try to treat me like I am a normal person. Whatever that means! Also, if you could act like the staff here and ignore any "pain behaviors" (pretty much anything that lets you know that I'm in pain). Also, don't help me with stuff unless I ask or clearly need help, always let me try first. I want to be as independent as I can, and if you step in and help me, I won't learn how to accommodate.

So far, I've learned so much, and I've only been here a few days, I can't wait to see what happens the next few weeks!

Feet, Worry, and Manna

2010-02-22T16:57:00.000-05:00

"Therefore, do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of it's own." Matthew 6:34

One last prayer request is for my foot/ankle. Back in September, I was experiencing some pain in it, which was diagnosed as Cuboid Syndrome, which basically means that one bone in my foot occasionally twisted a little bit, which caused pain. Last Thursday, the pain became much more severe and moved to the other side of my foot. I'm experiencing a lot of swelling and it is excruciating to walk. In fact, I'm using a cane to help me walk and would probably use crutches if I could (I can't because of my arm). Please pray that the doctors would be able to discover what is wrong with my foot and to be able to know what would be best to help decrease the pain and hopefully treat it! Though I know it is very unlikely, it is possible for the CRPS to spread to my foot, which concerns me a lot. It is bad enough having the loss of one arm, to lose the use of a foot as well would be devastating.

It is so easy for me to jump ahead and begin to panic while thinking about the possibility of what could happen, but I've begun to learn that worry is a waste of energy and emotions. By thinking about all possibilities of what might happen in the future, I'm investing emotions - both positive and negative - in future events that most likely will never occur. It is a much healthier use of emotions, energy, and time to concern myself with the present.

The idea of focusing on the present also helps when I begin to feel overwhelmed with the future. For example, when thinking about CRPS pain spreading, I begin to think that I cannot continue living with pain. It is easy to begin to think that the pain I feel at any exact moment will never end, which becomes overwhelming. When I start to feel overwhelmed with the future, I narrow my focus. Sometimes if a week is overwhelming, I concentrate on the next day, if a day is overwhelming, I concentrate on the next few hours, if even that is overwhelming, I concentrate on getting through the next few minutes. Eventually, every second feels like a miniature victory - another second which I have survived.

The concept of concentrating on the present can also be seen in the time that the Israelites were traveling in the desert. When God provided them for manna, he required that they pick up only enough for that day (except over the Sabbath) and only enough for their household. Any extra manna collected would spoil. The idea of God's manna being provided is similar, I believe, to the way He provides us with courage. If we try to think about tomorrow, next week, or even next year, we begin to feel overwhelmed, however if we focus on today, the present, we are able to realize that God has given us the strength to make it through.

I've heard more than once the phrase "God never gives you more than you can handle," however I strongly believe that is completely false. God can give you whatever He wants and you may not be able to handle it, however I do believe that He provides us with the strength to get through and the opportunity to escape any temptation.

Cleveland and Chronic Pain

2010-02-14T22:50:00.000-05:00

Tomorrow I'm starting something completely new and different. I returned to Cleveland Clinic yet again last Monday where I went through an hour and a half of questions as part of an assessment for admission to the Chronic Pain Rehabilitation Program (CPRP). Tomorrow, I will begin the program. Because the program is outpatient, I will be staying at the Ronald McDonald house, which is a huge blessing because it is less expensive than a hotel and is directly across the street from the building I where the program is located.

I am hoping the program will be able to help me not only physically with my pain, but also assist me in dealing with the pain psychologically. Each day, Monday through Friday from 7:30 to 4:30, I will participate in group and/or individual activities, including physical and occupational therapy, group discussions, and of course, visits with the doctor and/or nurses. The packing list included a swimsuit and towel, so I'm really hoping for some aquatic therapy as well! The average length of the program is three to four weeks, however some patients take longer, some take less, it all depends on the patient I'm told.

I'd like to ask for prayer for safety, as I'm downtown Cleveland alone, though the hospital campus is relatively safe, it is still the middle of a large city. Prayers also for each of the doctors, nurses, therapists, etc. who I will be working with over the next few weeks.

I Am Still Me

2010-02-03T20:07:00.000-05:00

This poem came to me in an e-mail from a blog called How to Cope with Pain. It really captures the idea of the fact that in spite of the pain, in spite of all that has happened in my life, I am still who I was, I am still me. My dreams may have changed, some of my abilities may be different, I may think differently about some things, but the truth is, beneath it all I still am who I was, I just have a different take on life.

I Am Still Me

My disease after all these years
Has brought to light many fears
Though I hurt every day that I live
There, inside of me, is still so much to give
Some of you don’t recognize me as still the same
And it often causes misunderstanding, hurt, neglect and blame
My dreams in life have remained intact through it all
So please stop laughing and judging as I stumble and fall
The hope of a better tomorrow is always what gets me through
My faith in God and miracles gives me a life anew
My message today very simply put for all of you
Is “I am still me” through and through!

The Little Things

2010-01-23T17:59:00.000-05:00

Today is just one of those days where you wake up and realize that not too much is going to happen because you just don't have the energy. Last night, I had a friend spend the night and probably stayed up too late, but changing my meds probably doesn't help much, I don't think either.

Mom mentioned something this morning about my goals for the day which had been to work on a workbook and reformat my hard drive. I hadn't done either, but started to list what I had done: got out of bed, got dressed, laid on the couch, slid off onto the floor, etc. By the time I was done, I had quite a list of little things I had done and I realized that sometimes it is the little thing that matters more than accomplishing one big project.

For example, today, my accomplishment is making a loaf of bread, because that seems to be the only thing I did. But if you look at the little things I did today: getting out of bed, getting dressed, making breakfast, eating breakfast, brushing my teeth, and the list goes on...even the simplest task I completed becomes a miniature goal and accomplishment in itself.

If only we would remember to look at these small things as accomplishments, rather than mudane, requirements, perhaps we could all go to bed feeling we've accomplished something. An accomplishment doesn't have to be big. Now if only I could remember this...

Thankfulness

2009-11-26T21:25:00.000-05:00

No matter how bad my day has gone, I still have things for which I can be thankful. A friend who has CRPS also, Kylee, has a blog and made a neat post that I decided to copy. She made a list of 10 good things from the day. Since then, I've been trying to think of things to be thankful for each day. So, since today is Thanksgiving, I'll share my list of 10...

1. I'm thankful for God and the strength and courage He has given me to face each day of life
2. I'm grateful for the family and friends God has provided me with who help when I forget God's love
3. I appreciate the blessings I have living here in America where I have plenty to eat, a nice warm home, and so much more!
4. I am thankful for the opportunity to get an education. For the opportunity to not only get one college degree, but to go back for a second. Also, for the opportunity to go to a Christian school without fear.
5. I'm grateful for my adorable dog, Maigee, who can cheer me up, no matter how my day is going (and I'm grateful for my rabbits, cats, and fish too).
6. I really appreciate the opportunities God has given me to travel around the world and share His love with others on various mission trips.
7. I'm grateful for the friends I've made through my journey with CRPS, and for the help they've given me.
8. I'm thankful for the medical opportunities I have in this country, for the doctors, nurses, therapists, etc. who have worked to relieve some pain and restore function to my life.
9. I'm grateful for myself, for the amazing body God has given me, for the opportunity to praise Him, and to do all the things that I can.
10. You know what? In a way, I'm even thankful for the pain and how it has changed my life, drawing me closer to God and for the way it changed my plans for the future, pushing me into nursing. I'm not thankful for everything the pain has done to my life, but I do appreciate a few aspects.

Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. Philippeans 4:6

CRPS Myths and Misconceptions

2009-11-08T15:55:00.000-05:00

To carry on with CRPS Awareness Month, here are some myths and misconceptions of CRPS from the National Pain Foundation.

Myth: Doctors know what causes CRPS.
Fact: No one knows what causes CRPS. However, a number of factors have been associated with it, including trauma, heart attack (though extremely rare), cervical spine or spinal cord disorders (rare), cerebral lesions, infections, surgery and chronically painful disorders such as carpal tunnel syndrome.

Myth: CRPS is a newly discovered disorder.
Fact: CRPS-I has been called a variety of names for nearly 140 years. Today, the disorder is most commonly referred to as reflex sympathetic dystrophy (officially called CRPS I) or causaigia (officially called CRPS-II). Lesser known names include Sudeck's atrophy, post-traumatic dystrophy, shoulder-hand syndrome, and reflex neurovascular dystrophy.

Myth: Minor injuries do not cause CRPS.
Fact: Not true. Even commonplace injuries such as a sprained ankle or a fall can cause CRPS, as can surgery. CRPS can start immediately after the injury or up to weeks later, especially if there is something — such as an undiagnosed fracture – that is causing persistent pain. There are even reports of "spontaneous" CRPS unrelated to any apparent illness or injury.

Myth: Pain from CRPS is not nearly as bad as patients claim it is.
Fact: Absolutely untrue. Severe, constant, burning pain close to the injured area or in one or more extremities, such as an arm, leg or foot, is among the first CRPS symptoms. What is unusual about CRPS is that the pain people experience is far greater than what normally would be expected after an injury. The pain then spreads beyond the area of the original injury.

Myth: People with CRPS suffer no symptoms except pain, swelling, heat or coldness in the injured area and occasionally a change of skin color.
Fact: Some people with this disorder endure many other aggravating symptoms. These include movement disorders such as muscle spasms, tremors, weakness, fatigue and a variety of emotional problems, including anxiety and depression. Inability to work or play effectively also creates social problems, such as loss of important role functions, and misunderstanding on the part of family members, employers, acquaintances and even health-care providers.

Myth: CRPS cannot spread throughout the body.
Fact: In about 70% of people, CRPS does spread, at least locally (in which case it becomes a "regional" disorder). In about 20% of cases, pain spreads into other limbs.

Myth: CRPS will disappear within six months.
Fact: Unfortunately, CRPS can become a chronic problem for many people, although spontaneous remissions sometimes occur and the disease sometimes subsides over time. Many Pain Medicine specialists believe that early, vigorous treatment within the first six months of diagnosis offers the best chance of controlling or curing the disorder. Such treatment may include aggressive pain control with medications, sympathetic nerve blocks, physical therapy with emphasis on activation of involved limbs and psychological counseling. A delay in treatment or inactivity increases the risk that CRPS will become a long-term, chronic disorder. Normal use of the limb is the best therapy.

Myth: Everyone with CRPS should get the same type of treatment.
Fact: Each CRPS patient needs an individual treatment plan. While some medications and therapies may help one person, they won't necessarily aid another. One "size" does not fit all!

Myth: Any physician can treat CRPS without additional consultation from colleagues.
Fact: Experience in treating a specific disorder is always important. Because CRPS is a complex condition with varying degrees of severity and associated disability, a team approach to treatment – if available – is critical. In addition to a physician trained in pain medicine, the CRPS treatment team might include a physical therapist, psychologist, social worker and others. Having a qualified physician in charge of the team helps prevent medical duplications, serious medical omissions or contradictory treatment instructions.

Myth: Opiods do not help relieve CRPS-related pain.
Fact: Opioid medications can be effective in many patients. Physicians use these medications when non-opioid pain relievers are not effective and before considering invasive treatment such as surgery or spinal cord stimulation. (See CRPS treatment options.) Opioids also are used to reduce the level of pain so that other forms of treatment, such as physical therapy, can be administered without causing additional discomfort. Many pain medicine physicians favor the use of long-acting opioids taken on a regularly timed, rather than "as-needed," basis. Although opioids are subject to a great deal of misunderstanding, such drugs usually can be used for legitimate medical reasons with little fear of addiction. However, tolerance can develop with long-term use and a patient may require increasing doses for pain control. This can lead to undesirable side effects. Make sure your physician is very familiar with the use of opioid drugs before taking them for pain management. The bottom line is that opioids are useful only if they help promote an increase in physical activity along with offering some pain relief and do not cause debilitating, undesirable side effects. Also, opioids must be used cautiously in patients with a history of addictive behavior.

Myth: CRPS occurs in psychologically unbalanced people.
Fact: Absolutely untrue. People who develop CRPS, in general, are psychologically no different than the rest of the population. At times, when someone endures months of constant, undiagnosed pain, he or she can become depressed or suffer other psychological changes. However, when CRPS symptoms are relieved, these problems typically disappear.

Fast Facts About CRPS

2009-11-07T16:24:00.000-05:00

November is CRPS awareness month so I decided to share some facts about CRPS to help raise awareness. Please feel free to pass them on, they came from the National Pain Foundation web site.

· Complex regional pain syndrome (CRPS) types I and II are the current terms used by the International Association for the Study of Pain to more accurately describe the conditions previously known as reflex sympathetic dystrophy (RSD) and causalgia.

· There are two types of CRPS: type I and type II. Type I refers to cases of RSDS that do not involve nerve injuries. Type II refers to those CRPS cases that do involve nerve damage.

· CRPS is a relatively rare disorder but may affect millions of people in the United States alone.

· CRPS affects both men and women. However, the incidence of CRPS is higher in women.

· The average age of people affected by CRPS is in the mid-30s, although children also can be affected.

· Medical science has not yet determined the real cause or causes of CRPS, but a number of precipitating factors are linked to the onset of CRPS. All have in common something that causes pain, usually in an extremity, such as an arm or leg.

· CRPS type II, perhaps the most severe type of this disorder, may develop when people injure a nerve or nerves in an extremity such as an arm, leg or foot.

· No one specific medical test or tool is currently available to diagnose CRPS with 100 percent certainty. Any combination of tests can only give a high, medium or low probability that the group of symptoms and signs is CRPS. Evaluation and testing involves a careful history and physical examination as well as a combination of complex tests that are best administered by specialists in Pain Medicine and management.

· A number of CRPS treatment options exist. These include drug therapy, nerve blocks, physical therapy, occupational therapy, psychotherapy, spiritual counseling, biofeedback, sympathetic blocks and the more controversial and unproven interventional treatments such as chemical sympathectomy (chemically destroying the afflicted portion of the sympathetic nervous system pathway), external or implantable pain-relief devices, supportive psychological treatment and/or spiritual counseling.

Trusting Him in My Vulnerability

2009-10-11T17:17:00.000-04:00

Friendships are a difficult thing when you have a chronic illness . Especially when you are surrounded by people who are "normal." It is a struggle to balance the desire to share what life is like for you and the desire to avoid appearing to be a complainer or a whiner or even worse, a faker. The more I live here at college, the more this becomes a struggle.

I've made friends, sure. There are people who I can talk to, but it seems that all of the friendships are superficial. Nothing really goes beyond "how are you" and the obligatory response of "okay."

I want something more, something deeper. I'm not going to lie, it isn't the fault of the people I meet, I'll accept some of the blame. I wear a mask to keep them out. They don't try to remove it. We all go about our lives happily as if nothing were wrong because no one wants to be uncomfortable. I don't want to be vulnerable and they don't want to pry.

It is easy to go through our lives and not let others in to see our vulnerability. It is easy to lead others to believe we are strong when we are weak, but when we do, are we a reflection of God's strength? When we allow our weaknesses to show through, then we can rely on God and allow His strength to show through.

So, maybe the next time I'm hurting and struggling and someone asks how I am, I should respond with "can you pray for me" and reach out with a little trust, a little faith, and trust God's strength protect me.

Love = Pain?!

2009-10-02T22:43:00.000-04:00

The following is from my devotional book for today. I found it really helpful and encouraging. It was a great reminder about God's love that I really needed to be reminded of today.

"Only goodness and faithful love will pursue me all the days of my life." Psalm 23:6

God cannot love us more or less than He does at this moment. He chooses to heal and not to heal for His own reasons. All His decisions come from His love. But whether He chooses to heal or take us home, His love remains constant.
From Breaking Free Day by Day by Beth Moore

I think if we are honest with ourselves we've all reached a point where we really wonder why we are going through what we are going through. As chronic pain patients, we wonder why God is punishing us. We question why He doesn't heal us. Yet, God's word is so clear that He loves us infinitely more than we can imagine. He loves us each the same, so it can't be that the healthiest person is loved any more (or less) than someone with whole body CRPS. We know He can heal, he did it again and again in the Bible. We even hear about His healing today. Why can't He physically heal in our own lives?

It may not seem possible, but the truth is, what we are going through is what is best for us for right now. We can choose to not believe it, but it is true that God loves us and only wants what is best for us. Just as a nurse or doctor may have to hurt a patient in order to help them heal, God allows us to struggle and to experience the downs of life in order to draw us nearer to Him. He loves us, and wants what is best for us.

An Unusual Anniversary

2009-09-28T21:31:00.000-04:00

Exactly one year ago today, I was studying for my biology class, just like any other day. I stood up, and in doing so, my life changed. Isn't it amazing that life can change in a split second? I had no idea that the numbness and tingling I felt would last so long, or become what it has today. Certainly I had no clue that the past year would have changed me so much.

Yet it has. Looking back, the change is interesting. Obviously, I've changed physically, but it is more than that. I've changed my area of study from graphic design to nursing (though I'm still passionate about missions, especially internationally). I would never had imagined that I'd be studying nursing this year. I had some open possibilities as to what I would be doing this year, but not one of them were nursing, or anything related. If you told me a year ago that I'd be studying nursing, I probably would have laughed, yet here I am.

My direction has changed, and so has my outlook on life. A year ago, I was a Christian, but my relationship with God has grown and deepened. I know some of this was the result of the influence of friends and professors at school last year, but the pain in my arm has drawn me closer to God as well. In a strange way, I'm almost glad for the pain because of this. I remember last summer telling God that He could do anything or take anything if it meant I would grow closer to Him. And while I'm not sure I would have prayed that so lightly if I knew what I know now, I can honestly say that it is all worth it.

I've made it through one year of living in pain - who knows what the next ones will hold for me. I just pray I have the strength to pull through each of them!

Hope

2009-09-19T19:57:00.000-04:00

"He has given us new birth into a living hope through the resurrection of Jesus Christ from the dead...in this you greatly rejoice, though now for a little while you may have had to suffer grief in all kinds of trials." 1 Peter 1:3 and 6

In our growth group, we are reading through 1 Peter and that stood out to me. We all have trials and grief, but even through all of our suffering, we can still hold hope because He has given us HOPE. It is that hope that gets us through the long days (and nights) and through the long trials. We can keep our hope because of our faith in what He has done for us. It doesn't mean life is going to be easy, we are going to have to suffer grief, but He will give us the hope to press on through the tough times.

You're Too Young

2009-09-16T18:19:00.000-04:00

I found the following article at a great web site called Rest Ministries and it really touched my heart and explained a little how I feel. I want to post more, but I'm very tired right now. Hopefully I can give an update soon!

"Too Young" by Carolynn Cheatham

“You’re too young to have this.”
“OK, then fix it, please.”
“We don’t know how.”
The common and frequent questions:
How did you develop a nerve problem?
Were you in an accident?

The answers, always the same:
I don’t know.

The doctors can’t figure it out.
No accident, I just woke up with it.
There’s nothing they can do.

The usual response:
Oh honey, I am so sorry.
Bless your heart.
You’re too young for this.

Sympathy, not empathy.
Few can see the good that has come out of it.
That I have matured and am stronger.

Maybe I am too young for this
But I am not too young to die serving my country,
Or have a child, in or out of wedlock;
To get drunk and make the choice to drive a car and kill someone
in the accident I cause.
I can incur thousands of dollars in debt, buying worthless things I don’t need,
Or get caught up in the fashion trends of the more-skin-revealed-the-better or
the-skinnier-the-better.
I could die trying to make myself look like the “standard” –
I am not too young to have an eating disorder.
I am not too young to have lots of boyfriends and risk STDs.

Why then am I too young for health problems?
My body isn’t old enough?
Disease and distress are reserved for the aged?
What a great future I am looking at 30 years from now when the “typical” health issues kick in. I can’t wait!
They say growing old is not for the faint hearted – what about growing up?
Maybe that’s it. Maybe I’m not mature enough to handle all this. Maybe they don’t want me to experience what they do or what they fear.
But if they experience what I do – what’s the big deal?
My heart is whole and my soul rejoices.
I am stronger, healthier than I’ve ever been.
I know who I am – the disease does not define me
Neither do the clothes, or the car, or the job;
It’s my heart.
I gave it to God 13 years ago and I’m not about to ask for it back.
Yes, these momentary troubles are tough.
I shed tears – some of frustration. Some of anger, and some of desperation.
But I know who walks beside me, holds my hand, and offers comfort and peace
in abundance.
I hate this pain sometimes, but I don’t hate Him.

Long Week, Lots of Events

2009-09-06T23:10:00.001-04:00

This has been a very, very long week. I'm exhausted. Homework has been heavy and intense, though I feel like I've finally caught up, and even got ahead on my Chemistry homework thanks to a boring trip to the ER (I'm fine, I think).

I had forgotten to pack my pills, so my parents made a special trip to bring them to me Saturday (4 hours round-trip, thanks so much!). When they came, they brought my dog with them, which made me so happy. We drove around the village my college is in and around the lake near the college. It was so good to get off campus, with my dog on my lap.

Today was a day of rest, much needed rest as by the time I got to Saturday, I was completely, I can't move exhausted, but a nap yesterday and today has helped me be a little more refreshed. I'm hoping to feel a little better and more prepared for class tomorrow than I felt Saturday and today. But in order to do that, I need to go to bed now!

Invisible Illness Week

2009-09-02T00:52:00.000-04:00

Nearly 1 in 2 people in America struggle with a chronic illness, yet about 96% of these illnesses are invisible. Words like Fibromyalgia, Diabetes, and Multiple Sclerosis have become common household words, but what about the millions who struggle with chronic illnesses like Complex Regional Pain Syndrome, Polycystic Ovarian Syndrome, or Lupus? Have you heard of those?

I'm one of the millions who struggle with pain and illness every second of my life, yet it can rarely be seen. Invisible Illness Week is the week of September 14 through the 18 and the web site Invisible Illness Week has an online conference during that week to help promote awareness for those who struggle. They also have a list, following the style of the popular Facebook lists, for those who struggle with an Invisible Illness. I've filled it out and am now sharing with you. If you have an invisible illness of any sort, I'd like to encourage you to post your own list somewhere.

1. The illness I live with is: Complex Regional Pain Syndrome in my left hand/arm/elbow (there are others, but this is the big one)

2. I was diagnosed with it: February 2009

3. But I had symptoms since: January 2009

4. The biggest adjustment I’ve had to make is: not being able to take on multiple tasks at once because I don’t have the energy, the pain slows me down, or my brain isn’t working quite right

5. Most people assume: because I look pretty normal, I'm doing better, but I'm good at hiding pain and I hate talking about it, so most people can’t see the pain and don't really try to

6. The hardest part about mornings are: waking up exhausted in spite of spending hours in bed

7. My favorite medical TV show is: House because I love the medical mystery aspect of it (I'm also really looking forward to the start of Mercy, hooray for a nursing show!)

8. A gadget I couldn’t live without is: my laptop because it allows me to connect to others with CRPS and connects me with the world when I can’t always get out

9. The hardest part about nights are: lying awake at odd hours, exhausted but unable to sleep because of the pain

10. Each day I take 21 to 29 pills & vitamins. (No comments, please)

11. Regarding alternative treatments I: have tried a lot, but have gotten nothing but rejection, it hurts and I’m sick of the false hope they offer, only to snatch it away from me

12. If I had to choose between an invisible illness or visible I would choose: I'm not sure, it is nice that I can try to hide my illness if I choose, but sometimes I think I would be treated better if it were visible, people would know and would be more caring, but it could also get annoying

13. Regarding working and career: I do graphic design on the side and am currently a full-time student as well

14. People would be surprised to know: I have a high pain tolerance, I don't know say anything unless the pain is completely unbearable, I may be having a 7 or 8 day and you won’t notice much (I don’t think), yet at the same time, I long for someone to see me for who I really am

15. The hardest thing to accept about my new reality has been: the fact that I'm going to live with this for the rest of my life, it will never go away, yet it won't kill me

16. Something I never thought I could do with my illness that I did was: I'm really proud of being able to tie my shoes right now. Though it hurts, I do it and I'm happy (I stare at my shoes often now, I never knew they could be so exciting!)

17. The commercials about my illness: What commercials? No one has heard of CRPS and there are no FDA approved drugs for the treatment of it.

18. Something I really miss doing since I was diagnosed is: sleeping through the night, doing crafts and things without thought

19. It was really hard to have to give up: my independence, such as driving (though I'm doing it now), making decisions, etc.

20. A new hobby I have taken up since my diagnosis is: art, such as painting and sketching, it is great therapy physically and emotionally, I can really let my feelings come out in art that I'd never share in words

21. If I could have one day of feeling normal again I would: go somewhere cold and never think twice about using my hand, I'd make a big snow ball, go skiing, and then skydive, then I'd go and sleep all night long and wake up the next morning refreshed and not one bit exhausted!

22. My illness has taught me: to truely treasure the important things, I've grown so much closer to God over the past months, He is my Rock!

23. Want to know a secret? One thing people say that gets under my skin is: people who say "wow, you look good for being sick" or "you don't look sick" or "you are looking much better"

24. But I love it when people: accept me for who I am, injury and all, and treat me the same, yet are understanding when something has to be different

25. My favorite motto, scripture, quote that gets me through tough times is: "When CRPS seems to have taken everything away, God steps in and uses my broken body in ways I never imagined." and "Trust in the Lord with all your heart and lean not on your own understandings, in all your ways acknowledge Him, and He will direct your paths." Proverbs 3:5-6

26. When someone is diagnosed I’d like to tell them: talk about it with someone, whether a friend, family member, or counselor, it is so easy to "stuff" it, but you really need to talk to someone

27. Something that has surprised me about living with an illness is: the community of others who have invisible illnesses, I never knew the world of ill who were living among me

28. The nicest thing someone did for me when I wasn’t feeling well was: a professor just sat and listened to me as I sobbed and broke down; a room mate who sacrificially gave up hours and hours of her time to drive me to appointments and therapy when I couldn't drive (after she and another friend "revoked" my license); a friend made me laugh and cheered me up, distracting me from the pain; and a doctor who is sympathetic, listens to everything I say, and spends as much time with me as I need

29. I’m involved with Invisible Illness Week because: I have discovered millions of others who have an illness that cannot be seen, yet they are struggling, whether it is physically or emotionally with the devastation of living with an illness and I want to help spread the word to those who don' know.

30. The fact that you read this list makes me feel: happy, I love that you were willing to take time out of your day to read about me and learn a little more about me. I'd love it if you could respond and let me know that you read this. If you have an invisible illness, please let me know!

Attack of the Mustard Shirts

2009-09-01T23:46:00.000-04:00

Saturday, I arrived my car was swarmed by a herd of student leaders wearing the mustard yellow shirts. They attacked my stuff and carried it all into my room in just a few minutes. Of course, my room didn't look so pretty, in fact, to try to photograph it, I had to climb over stuff!

Monday was orientation to nursing fundamentals, and I must admit that it was all a little overwhelming but exciting at the same time. We bought our syllabus for the course, which happens to completely fill a 1-inch binder! I don't think you can help but to look at it and say, "am I really going to learn all that stuff in just 15 weeks?!" Tomorrow I have my first Chemistry and Anatomy and Physiology classes and I'm a little nervous - this is going to be a very busy semester, especially if I struggle with chemistry as much as I did in high school.

I had my first "real" chapel this morning. Chapel is a little like a church service and we are required to attend three times a week. Because my clinical day overlaps with one of the chapel days, I am exempt from one, but still have to attend the other two. The building is larger than the one at my previous college, which I really appreciate because the sound has more places to go rather than vibrating all around. I've decided I'm going to work on desensitizing myself to the bass vibration by slowly trying to acclimate my arm to it. I'm starting by using my TENS, but will decrease the intensity and time, and hopefully work up to being able to truly worship without being constantly distracted by my arm.

Today was busy, I took my TEAS test (nursing entrance exam) and got either a 86% or a 94%, I couldn't quite make out the results. It took over two hours and I was very tired of sitting by the time I was done. Though my arm was hurting a bit more than usual, I decided to go over to the music hall and see if I could borrow a euphonium to join one of the campus bands. I'm glad I did, because I have a euphonium to borrow and I have an audition tomorrow. I'm not sure which band I'll be in exactly, but I'll know more tomorrow hopefully.

Tonight, I spent time working in my room, and I am nearly finished organizing everything. In fact, I'm almost scared about how organized I am right now, at least my room. My schedule is a little chaotic now, but I'm doing my best to write everything down and keep track. I've noticed the more stressed I am, the more pain I have, which means I forget more, which means I stress more. I must remember to relax and keep track of what I need to do at the moment and let the future fall into place. In the meantime, here is a picture of my room tonight, far more organized than before!

The Unknown

2009-08-26T19:45:00.000-04:00

Most of today has been spent packing and sorting. This Saturday, I'll be moving into my home for the next nine months, located in north-central Indiana. Though I am looking forward to college, I'm also a bit hesitant because there are so many unknowns that lay ahead.

In spite of my CRPS, I'm pressing on and not only continuing college, but undertaking the challenging major of nursing. Science has always been my favorite subject (well, in addition to art) and I was completely fascinated by my Biology and Human Anatomy classes last year. The personal experiences I've had with the medical profession began to make me seriously consider going into nursing. When I told my parents, I think they thought I was a bit crazy (at the time, I had very, very limited use of my hand). Through researching, I discovered that nurses with disabilities are more common than I thought. In fact, I've read about nurses who were born with one arm, nurses who are deaf, and even those in wheelchairs. It seems that not even the nursing feild is limited by disability and I am determined to make that true in my case as well.

The stress of the unknown, in spite of my determination, is starting to affect me, even though I haven't even started classes yet. I must admit, and I'm stressing over packing and getting everything done before I leave, so my pain has been higher the past few days. Yesterday in therapy, my arm turned a lovely shade of blue, then it was nice and red last evening, redder than normal (it is usually redder than my good arm and colder).

I'm also worried about making new friends, and what people will think of me. I'm concerned about the required chapel services because my arm is still far more sensitive to bass sounds. I'm nervous about meeting professors and telling them about my CRPS.

To add to everything else, I've been having trouble sleeping the past couple weeks and specifically the past few days, partially because I killed my jaw. I have TMJ (temporomandibular joint disorder) and my jaw has popped for as long as I can remember. A few times it has been temporarily stuck, but this was the worst yet. My jaw remained locked for a week and a half, and I still can't chew anything hard. The added pain from this has been pretty bad in addition to my arm.

My dentist tried using just a splint, but that made no headway, so he had to give me muscle relaxants and an anti-imflammatory, which worked, but made me so drowsy I've been pretty much useless the past two weeks. Now I'm trying to do everything I haven't done the past two weeks in two days and it isn't working too well. Fortunately, I'll be done with the medication tomorrow, so I hope I'll be a bit more alert and energetic by the time I start school.

The Every-Day Stuff

2009-08-26T19:17:00.000-04:00

So, I intended for this blog to be more of what I do in day-to-day life, but I've begun to only post when I feel like I have something "significant" to say. Which isn't very often; in fact if I remember what I was going to say and can complete a sentence, I'm doing well. Actually, I wanted to start blogging to show what life is like for someone with CRPS, and life with CRPS isn't all highs like I've been posting. Naturally, I don't want this to become a repetitive stream of negative either, but I'm hoping to starting posting more often about the simple stuff.

I Wanna Be a Jalapeno!

2009-08-11T11:26:00.000-04:00

For some bizarre reason, I planted twenty pepper plants – twenty! Last week, I decided to pickle some of my pepper crop. While happily attempting to say that silly tongue twister about Peter Piper’s pickled peppers, I carefully began to de-stem, de-seed, and slice my pretty crop of purple, white, and green peppers. Finally I was down to one last pepper – the jalapeno. I’d worked with jalapenos before, and they hadn't burned my hands, so I was quite confident that I'd be fine.

I sliced the stem off the top of Mr. Jalapeno and the burning oils instantly burned my nostrils. Now, you'd think that would be enough to deter me and make me retrieve gloves, but I'm not that smart. I continue to slice and deseed the Jalapeno, only to feel the burn starting slowly on my hands. It didn't take long for me to regret my decision to brave it out. My lungs were burning with each breath and my hands weren't much better. To make things worse, at some point in time, I must have pushed the hair out of my face because my forehead and cheek were burning as well - OUCH!

No matter what I tried - water, soap, hand cleaner, nothing could help the burn that was stuck on my hands. I continued my pickling and canning in spite of the burn, which was getting worse by the minute, I couldn't shake it! As I was trying to find something that would offer relief, I was thinking and decided that Christians should be a bit more like Jalapenos.

When we meet someone, especially non-Christians, we should leave a lasting impression on them. An impression that persistently continues to tug at their hearts, like Jalapeno oil on the skin. We have the Spirit living in us, and we shouldn't hold Him in, but let His love shine through us in everything we do, and on to each person we come into contact with.

I pray I will be a little more like a Jalapeno each day. By the way, a product called Technu works to remove Jalapeno oils from your skin. It is marketed for poisen ivy/oak/sumac. Water just makes it worse. Just in case you decide to pick a peck of pickled peppers without gloves (I don't recommend it).

Comfort from a Storm

2009-07-10T22:57:00.001-04:00

One thing that I've been questioning recently is how God could have allowed all this pain to happen to me when so many people were praying for my surgery to go well and cure the pain. A few days ago, God revealed a comforting analogy to me through nature that helped me understand a little bit of why.
Some days, the sun is hidden by many clouds. Sometimes the rain pounds the earth, while thunder shakes the earth and lightning streaks across the sky. This is not what we expected, not what we wanted, yet God remains in control. The rain that drenches the ground also softens the seed coats to allow growth. Without it, the seeds could not grow. My life has seemed like a thunderstorm the past few months. I often struggle to see how it is the answer to my prayers, but sometimes we need the stormy times for growth. I pray that my heart would continue to be softened to hear His words and to grow closer to Him.

Absolutely Nothing

2009-05-20T17:32:00.000-04:00

For the first time in a long time, I am doing nothing, not because I have to but because I can. Sure, I have a few things I could be doing, but they aren't urgent and can wait. It seems bizarre that if something I want to do pops into my head, I have the energy to hop up and do it. It almost seems foolish to waste my energy on doing nothing, but I'm going to enjoy it while it lasts.

So, why don't I have anything to do? Because my final papers are in, my final exams are over, and my year of college is complete. Well, I do have an online class to complete, but that isn't due until mid-July, so I'm free! Free, that is, until I get home and I'm stuck in my room unpacking, but for now, I'm enjoying the freedom of doing nothing. Problem of doing nothing is that there is nothing to distract you from the pain either. In fact, all this rambling is my attempt to do something so I don't have to think.

My dorm room is pretty empty, since I've packed and taken most of my stuff home last weekend and the weekend before. In fact, I have free time to do something fun, but nothing fun to do something with (except my lap top obviously). I just have some clothes and my school books left.

I must say, I'm fairly proud of myself for finishing this semester. It may be the longest, hardest, and most painful school term in my life. Since January, I have had two surgeries, two nerve blocks, and a three-week continuous epidural in addition to numerous drugs but still have managed to complete 22 credit hours of school work. Not only that, but I have managed to pull off good grades as well (I think I have all A's except one or two B's).

Who said that CRPS ruins your life? I have overcame the pain and pressed on, even when others told me repeatedly to quit, to give up, to go home. I refused, pressed on, and emerged triumphant and I hope that this is an example to others. All of the long, sleepless nights (because of the pain or homework), the slow, painful typing, the excessive studying while in pain, all will have paid off if I learned something (I did) and if I grew closer to God (I did), and if I was able to make a change in others lives. I'd say it was a pretty successful semester, but I am glad it is complete, though I hate saying good bye to all my new friends.

Servant - For Life!

2009-05-16T15:33:00.000-04:00

A serious commitment is something that should not be taken lightly, but this past year, I have grown closer and closer to my Savior and I wanted to demonstrate the new commitment I have to Him in a visible way.

"But if your servant says to you 'I do not want to leave you,' because he loves you...then take an awe and push it through his earlobe, into the door , and he will become your servant for life." Deuteronomy 15:16

2,000 years ago, the Son of God endured terrible pain to pay the price to free me. Though I am released and free to do as I wish during my time on earth, I have chosen to return to Him, because He loves me. I don't want to leave the God I love, who loves me more than I could ever imagine. I choose to serve Him for my life.

As a visible sign of the fact that I am a bond-servant, a servant who was set free, but chose to stay and serve my master out of love, I had my ear pierced a second time. I now have a permanent reminder that I am a servant, just as the bond-servants in the Bible times.

Pride Goes Before the Fall

2009-05-13T19:54:00.000-04:00

"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

2009-05-12T10:29:00.000-04:00

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?

2009-04-10T22:20:00.000-04:00

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?

2009-04-05T22:37:00.000-04:00

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

2009-04-02T21:40:00.000-04:00

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

2009-03-31T00:17:00.000-04:00

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

2009-03-30T20:30:00.000-04:00

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

2009-03-28T15:46:00.000-04:00

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

Once Upon A Time

2009-03-28T14:28:00.000-04:00

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!