Pain, Pain, Go Away!

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.

Added later: Turns out the abdominal pain is a kidney stone…but wasn’t diagnosed until living with it for 3 or more months.

An Orange Frisbee

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

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

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

“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

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.