My Walk

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My Walk

Chloe Arnwine, Guest Writer

It was November 4th, 2017 when I fell while playing in a high school basketball tournament and sprained my ankle. Being a teenager, 15 years old, I had my share of bumps and bruises and sprains. My family didn’t think much of the injury after going to Children’s Hospital to find out it was only a high ankle sprain. I did physical therapy as prescribed by the orthopedist, where the therapist would stretch my ankle out and do hot/cold therapy. After three weeks, my foot was turned inward, and it appeared as if my ankle was dislocated. X-rays and MRIs showed only bruising, one would get from a sprained ankle. My doctor said it was possibly a problem concerning my muscles and if it did not straighten up, he would likely be casting it for three weeks.  

As weeks passed, things changed for the worse. My doctor decided to cast my ankle at the end of December, and we scheduled a neurologist appointment. The bizarre thing about not being able to move my foot is when the doctor sedated me the foot became lose and mobile. My foot was put in a neutral position when casted, but when the cast was put on and I woke up, it had felt as if someone had broken my ankle, I was in severe pain. I remained in the cast for three weeks. When the cast was removed my foot immediately turned inward and, again, it had felt as if someone had broken my ankle, the pain was unbearable.  

My dad and I went to see a neurologist where I was diagnosed with CRPS (also known as RSD) and Focal Dystonia. Complex regional pain syndrome (CRPS) is a rare neurological pain condition, where the pain gets worse over time and often spreads throughout the body. Focal Dystonia is what was causing my foot to turn inward. I have never heard of anything like it which scared me. In a matter of a few weeks, the amplified pain went from my left foot, up my left leg, and across back. I started doing therapy at Pain Consultant of Knoxville seeing an OT and PT therapist. My doctor recommended me trying blocks which never truly worked. Blocks are very similar to epidurals where a fluid injected to the lower spine meant to warm up my left foot, in hopes to restore health to the nerves and muscles. My Doctor considered the option of giving me a spinal cord stimulator, which is two wires inserted in your back with a battery. It helps by sending a mild electric current to a couple of nerves that are responsible for transmitting the feeling from foot and ankle to my brain intercepts the message to reduce pain. We decided to go forward with the implant, and I was finally getting better.  

When school started up everything started to get worse again. My pain went up my spine, through my left arm into my left hand, and through my right arm into my right hand. My doctor decided to do another block procedure in my left side of neck and my right. Doctor ran out of options for me here locally and recommended we considered Cincinnati Children’s Hospital since they have a program dedicated to pain management. Before we attended our first meeting at Children’s, we spent fall break in Gulf Shores Alabama where we had temperatures to 80 or 85 degrees, and I felt great. Upon our return from Knoxville the temperature there had drop to the 40’s and I did not realize that a big swing in temperature could cause my CRPS to flare up. Sunday morning, the day after we returned from fall break, I could not put any weight on either of my feet, nor get out of bed. Throughout the day the pain in my arms and hands intensified. Slowly my hands began to close and lock, I was unable to open my hands Sunday night. By the end of the night, I could not use crutches. From this point on, I would need to be in a wheelchair.  


Tuesday, the 6th of November, I was sitting in US History when my phone began to blow up. I had just finished a test, so I checked my phone. There were text messages from my dad and a group chat with my family. My first thought was, “Oh, something funny might have happened,” but it was actually my dad informing me and the family that I had been admitted into Cincinnati Children’s Hospital’s FIRST program. Immediately I had a pit in my stomach thinking about what was to come and knowing I had to say goodbye to my friends. I was nervous but I knew everything was going to be okay. 

Later that same day my dad and I were driving up to Cincinnati. On our way up I was extremely agitated, and my hands began to clench into a fist. My dad and I arrived at a hotel to stay the night. The next day I woke up ready to start my day at the hospital. When I arrived, the first person I met was Dr. Williams who was happy to see that I was finally here. I was taken to the therapy room where I met Nicole my occupational therapist and Kelsey from recreational therapy. When I met Nicole, I knew she was going to be one of my favorite therapists because she was welcoming and reminded me of Dr. Williams. Nicole did multiple tests focusing on hand strength and motor skills. She asked me what types of things I would want to be able to do when I leave, and my answer was walking. Kelsey seemed pretty cool when I got to sit down and talk to her. She talked to me about what things I would want to do, but had never tried before. I thought the question would be super easy to answer, but honestly it wasn’t because there were multiple things I wanted to do. At the end of the session, Kelsey told me I would meet two other kids in the program later in the day, which I was honestly overwhelmed because I felt like I had already met too many people that day. 

After meeting with Nicole and Kelsey I had psychology with Dr. Williams, who is one of my favorite doctors in the program. She talked about the importance of the strict schedule that would allow me to be up and functioning with a busy day. I would have
to follow the schedule for the rest of my stay from waking up at 7:30 to lights out at 10:00. My schedule normally looked like this: wake up; physical and occupational therapy; school; psychology; lunch; physical and occupational therapy; music therapy, child life, or recreational therapy; home exercises; dinner; cardio; then get ready for bed and lights out at 10:00. Later that day I had physical therapy with Emily who is hilarious and who made physical therapy enjoyable. At the end of the first day I went to play pool with Kelsey and met two other kids who were in the FIRST Program. As the week went on everything seemed less complicated, but I was constantly catching myself wanting to be home hanging out with my friends; I had to remind myself why I was here, and how lucky I was. 

On Thursday of my first week my dad and I went to a meeting with all the doctors and therapists. It was a 30-minute meeting and I was told my discharge date would be December 19th. This made me sick to my stomach because I had thought I would only be in Cincinnati three weeks. A few days passed and on Monday, the 12th of November I was introduced to the E-stim machine. The E-stim is a machine that sends electric currents to the muscles where it contracts them. It helped to adjust my foot into a neutral position, but the pain was so intense I could hardly bear it. The weekend came around and I had a pass to go to the Aquarium with my dad and then go eat at Bakersfield, a Mexican restaurant. On Sunday my mom came up, I had not seen her in a week. The first thing she said was to comment on how messy my room looked; this annoyed me. Later that day I played multiple games with Justin, another FIRST patient, and my nurse in which I won in sorry and lost in clue. I was excited to start the week since I was getting a little stronger each day! 

By week three I knew I was at the right place. I started each day in PT doing the E-stim; the pain was more tolerable than it had been for the first two weeks! I ended my morning PT sessions with practice standing with the parallel bars for 15 seconds. After PT I had OT where I would do the hand bike for four minutes forwards, then backwards, then 2 power minutes. Usually in OT we would also work on my hands to try and open them. OT made me hand splints I would wear during sleep to help straighten out my hands. Psychology came up with a behavioral plan, which said that if I did not wear long sleeve shirts or pants, got on my phone during lunch, or did any other bad habits, then I had my phone taken away for 10 minutes. 

In addition to the behavioral plan I had to talk about my emotions during psychology. I was never someone to open up and talk about my emotions because I have been through so much and I had trust issues ever since I was casted December of 2017. In psychology Dr. Homan taught me the importance of expressing emotions because it can affect pain, she told me I had to open up to someone or I get my phone taken away. That night I opened up to my favorite nurse, Katie, who visited me every night except Wednesday. I told her I have had a hard year from dealing with CRPS, surgery, my darkest summer, and losing a friend in October from a car wreck. Katie made me look at life from a different perspective; realizing the good outweighs the bad and if I had not gone through so much, I might not be the person I am today. 

Days passed and Nicole decided we would make chocolate chip cookies together. It was difficult since my hands were still in a clenched position, and I thought I added too much salt. My dad and sister came up that day and I gave them both a cookie, they said how amazing the cookies tasted, which shocked me because I thought I had messed them up. November 22nd my grandmother, mom, dad, sister, grandfather, and brother came to spend Thanksgiving with me. I was excited to see my family since it had been awhile since I was with all of them. We played games, ate turkey together, and they all loved the cookies I made with Nicole. 

Another week went by and there was a new guy in the FIRST program. Unfortunately, we did not get off on the right foot during a child life session. I thought, “My friend in this program will be leaving on the 30th and I will be stuck with this new guy as my only company.” I worried I would dread child life and recreational therapy sessions. The 30th came around and I was happy for my friend to leave the hospital even though I may never see him again, because it meant he had made good progress. Saturday, my mom and I decided to leave after morning physical and occupational therapy. We saw a Star is Born and after the movie, were in a wreck. We were on our way to the mall. She thought she could turn, but she couldn’t, and while she turned, we were hit on her side. I was jerked hard and forward and instantly my left upper back, arm, and neck started to increase in pain. While we waited for the cops, I knew something was wrong, but I thought it was my CRPS acting up because of the crash. It did seem odd because I had never felt that type of pain before. My mom and I went to the Kenwood mall to buy two pairs of Vans. After shopping my body still didn’t feel right and my left hand began to clench in a fist. We went to get food, and then we went back to the hospital. I told my mom I was okay for her to go back home and that I felt fine. When it started getting later the pain increased and everything was becoming more and more difficult to tolerate. I told a nurse about my pain and she called a doctor to come check out my neck. She said everything seemed fine but wanted X-rays to verify nothing was wrong. The doctor was concerned because my X-rays could not rule out a fracture. The doctor thought it was important to do a CT scan to rule out a fracture. The CT scan showed a stretched ligament in my neck and they wanted me to wear a neck brace for four to six weeks. 

My final weeks at the hospital I saw myself change significantly. I had an idea to cast my foot with E-stim on to keep it in a neutral position. Emily thought it was a very good idea and after four times of casting my foot finally stayed in neutral. I was so happy since I had not seen my foot in that position for a year! Since my foot was in a neutral, it felt stronger in a brace to help remind me not to turn it back in. I went from walking with a walker to using crutches in a week! For my final days at the hospital I continued to try pushing myself constantly to reach my goal of walking with only one crutch. The neck brace had both good and bad affects when it came to walking on crutches. It would keep my body in line when walking, but when I turned my head my whole body would become unbalanced. I was happy that I could see a change not only physically, but also emotionally because of psychology. I could tell I was opening up more about how I felt in relation to family, friends, school, and CRPS. Emily and Nicole tested me with how far I could walk and the strength in my hands and compared it to the first day of testing. The change was amazing! 

My discharge date was supposed to be Wednesday, the 19th of December, but I decided to stay three days longer because I was not okay with the progress I had made and was not ready to go home. Everyone was happy I decided to stay and keep pushing myself to be able to walk. No matter how difficult it got I was not going to stop, and Emily and Nicole would keep pushing me. Although it meant I would have to spend my birthday in the hospital, it was worth it to be able to come home walking.   

The first day I met my pain doctor he was not able to shake my hand, but he told me the day my hands are open he expects me to shake his hand. Wednesday the 19th, my doctor came in my room and the first thing he did was shake my hand; in that moment I felt relieved I had come so far in my time here in Cincinnati. My family and I agreed that I would need to look into an outpatient clinic in Knoxville other than the one I had been going to. I would rather work with kids my own age. The only issue was that there were only two places in Knoxville who knew about CRPS and one of them was the place I use to go. Emily (PT) decided to at KOC (Knoxville Orthopedic Center) and educate them on CRPS. I was very happy to know I would have somewhere to go after returning home to keep my progress going. Emily tried to stand up for me to have my neck brace removed, but she got denied by the doctors. Before discharge a neurosurgery doctor came by to check my neck and told me another two weeks with it on. I was extremely annoyed by this decision, but would not let it take away from enjoying all the progress I had made. 

Before I left I had to do a leave your mark project where you color or paint a canvas with any design you would like. I picked the quote: “Good, Better, Best never let it rest till your good is better and your better is best” – St Jerome. The quote stood out to me because good was not where I wanted to stay so I pushed my limits and continued to get better. I am satisfied with the effort I have put into getting better. I enjoyed my time in Cincinnati more than I thought I would. My favorite part would be either physical therapy with Emily or music therapy with Brittany. Music helped me with forgetting about the pain and getting lost in the music. 




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