Teen Life With Chronic Pain
My life with reflex neurovascular dystrophy, now known as complex regional pain syndrome (CRPS). November is CRPS Awareness Month.
My childhood was full of adventure: skateboarding, climbing trees, racing down an uneven driveway on a bike without brakes. Needless to say, I was a fearless kid. I was extremely tolerant of pain; almost nothing hurt me. I could brush off every type of pain, except for one…my invisible pain.
My invisible pain was sharp, brief, and unpredictable, which led doctors to believe that it was growing pains. I remember thinking that this pain was normal and that every child faced it; this forced me to push through and ignore it as much as I could. I was always the kid who never reacted to pain. I wasn't going to let some growing pains that everyone had affect my life!
These "growing" pains never went away; in fact, they intensified. I started experiencing severe back pain in third grade, and I was diagnosed with scoliosis. My doctor was still puzzled; scoliosis doesn't normally cause such immense pain. I started physical therapy and my back gradually felt better, plus I was exempt from fitness exams at school!
I continued to blame my back pain on scoliosis and ignored the pain in the rest of my body throughout third and fourth grade. In the beginning of fifth grade, I started feeling an indescribably intense pain in my left foot. This was around the time that I became sensitive to touch. One day, just when school had finished, I struck up a conversation with some of my friends in the hallway. I don't remember what we were talking about, but I'll never forget when a girl dropped her gym bag on my foot. I screamed and burst into tears; the pain was unimaginable. The entire hallway became dead silent, with the exception of my bawling. Teachers ran out of their classrooms, confused and concerned.
My teacher spoke about this incident with my mother and she quickly scheduled a visit with my pediatrician. My doctor had this look of disbelief on her face as I was explaining the hallway story. I felt like she didn't believe me; this thought was reinforced when she raised an eyebrow and said "uh-huh" after checking my foot for broken bones. My X-rays were fine, and my doctor said that I had probably just sprained my foot.
A couple of months passed and the pain continued. The acute pain had spread to my entire left leg and it became difficult to walk. I withdrew socially and I couldn't focus on anything other than my pain. Within a couple of weeks, my closest friends got pretty tired of my attitude. On Jan. 15, 2010, the night before my 11th birthday, I got a pair of crutches. When I returned to school, kids flocked to me with pressing questions about my "injury." My classmates were quite confused when I explained that I didn't actually injure myself and had no idea why I was having leg pain.
Apparently all my peers heard was "didn't actually injure myself" because rumors about me "faking being hurt" spread like wildfire throughout my school. A girl once grabbed my crutches from the side of a bench where I set them during recess and loudly announced, "Caroline is not hurt! She can walk. I saw her. Stop faking it." These words stung and my pain levels increased. I got up from the bench and tried to grab the crutches from her. She let them fall before looking me in the eye and saying, "Stop trying to get attention." I noticed my pain levels increasing, again. This girl said some nasty things, but she helped me realize that stress caused my pain to surge; I would later find out that this was crucial to my diagnosis.
Per my pediatrician's request, I saw an orthopedic surgeon on Feb. 3, 2010. The orthopedic surgeon suspected that I had juvenile rheumatoid arthritis (JRA) and he promptly ordered a blood test. By this point, I was sensitive to pain throughout my body. Previously, I had never been afraid of needles; I actually didn't mind vaccines. To me, vaccines meant a day of watching my older brother, who was scared of needles, cry while nurses gave me lollipops and stickers followed by ice cream from my mother.
However, the blood test was completely excruciatingly painful. The slightest breeze caused my pain to flare, so I was terrified of a needle breaking my skin. I had never before cried about needles, but here I was…11 years old and freaking out before the nurse had even prepared her equipment. My mother was in complete shock; the look on her face told me that she knew something was very, very wrong. Two additional nurses were called into the exam room to hold me down, and the pain from their tight grips and the needle was inconceivable. I hobbled out of that room, on my crutches, and saw the astonished expressions on peoples' faces when they realized that the screaming person was a tween, not an infant. I have cried about every vaccine and blood test since that day. I'm used to the pain, but I can't overcome that memory.
The next day at lunch, I told one of my friends about the blood test incident. "You still cry about needles?" she laughed. Nobody understood how much this hurt; I felt crazy and alone. My lab partners in science class rolled their eyes every time I reminded them that I couldn't carry the materials back to the closet, even though it was my turn. My friends got tired of my issues and "need for attention." The first couple of days that I was on crutches, kids were volunteering to carry my backpack and get my lunch tray. Everyone wanted to be my friend, but that didn't last for very long. I was now known as the "school fake."
My blood test ruled out JRA, but my orthopedic surgeon wanted to run an MRI, just in case. I was working on a class project when my teacher looked up from his computer and said, "Caroline! Your mother is here to pick you up. You're going for an MRI." I packed my schoolbag, hobbled down two flights of stairs, and entered the main office. My mother was there, ready to take me to the hospital.
The assistant at the MRI room helped me hop to the machine; my metal crutches would have been a hazard in there. The assistant's touch caused my pain levels to flare. I probably would have had less pain just walking to the machine. She gave me movie goggles and a selection of PG movies to watch. I spent what felt like an eternity in that machine watching The Little Rascals and assorted Disney shows because they could not get a clear image of my foot.
I saw my orthopedic surgeon the following week. He pointed out obvious inflammation on my MRI and advised that I wean off the crutches and see a rheumatologist. Despite having ruled it out previously, my orthopedic surgeon diagnosed me with JRA. The next day, my school administration gave me an elevator key, which I had been asking for since the beginning of the school year. I was also completely exempt from recess and gym, which I decided to spend in the school's computer lab helping the first grade class with Microsoft Word and the fourth grade class with Scratch, a basic programming language I have loved since third grade.
To comply with school regulations, I had to ride the elevator with either two students or an adult. I briefly regained my popularity; everyone wanted to ride in the elevator…and I had the key. Later that week, after 44 consecutive days of being on crutches, I got into my mother's car and left my crutches on the curb, expecting my brother to put them in the trunk. We were in a rush and my brother forgot to put them in the trunk along with his backpack. My mother accidentally ran my crutches over with her car. We laugh about this now, but my newfound popularity died with the crutches. My family saw this accident as an opportunity to literally stop my dependency on crutches, which prevented my body from deteriorating — thank you, parents. Since I could walk, I had to return my elevator key. I was greeted at school with a nasty comment from a fellow student: "See? I told you she could walk! Give it up, everyone knows you're a fake." I felt empty, like nobody would ever understand.
I saw Dr. Rosen, the rheumatologist, on March 17, 2010. He ran a couple of tests before asking questions like, "Are you sensitive to touch?" Definitely. "Does stress make your pain worse?" I thought about the incident at recess…I thought about my grandmother dying in September, the bullies at lunch…yes, stress did increase my pain levels. With this information, Dr. Rosen was able to diagnose me with reflex neurovascular dystrophy (now known as complex regional pain syndrome). After a bit of research, this disorder seemed to fit my symptoms. Finally, an answer! The only problem was treatment. He suggested that I enroll in an intensive RND treatment program at the Children's Institute of Pittsburgh, which had a three-month waiting list.
I returned to school with a presentation on reflex neurovascular dystrophy, or RND. I explained the disorder to my classmates and showed some of the methods I'd been trying to lower my pain levels: braces, compression pads, desensitization, biofreeze, etc. Lunchtime that day was interesting; a lot of the boys kept asking me about the sensitivity to touch aspect. "So…I touch you and your brain interprets that as, like…a knife or something? So it really hurts? That is SO cool! Uh, sorry." My girlfriends ignored me during the entire meal.
The next day, the entire fifth grade embarked on a school trip to a remote camping site; I decided to stay home and focus on my physical therapy program at the Children's Hospital of Pittsburgh. Unfortunately, I didn't have the opportunity to show my presentation to the three other fifth grade classes. A week passed and my classmates returned from their trip with lots of questions. Many rumors were started at that campsite — I was a hot topic! Kids came up to me in the halls asking questions like, "So…you have a neurological disorder? My mom said that meant a brain problem." "So if I touch you, does it hurt?" "How does that hurt?" "Something about reflexes, right?" Once again, nobody understood.
A few days later, I gave my presentation to the other fifth grade classes. My classmates had even more questions. "Why does the green liquid (biofreeze) help? Can I touch it?" "So…it's all in your head? You're not actually in pain, but your brain says you are?" These questions were very hard for an 11-year-old to answer; I felt empty and lost, again. The fifth grade teachers were very supportive and tried to help me answer the questions, but my classmates still wanted more information. Rumors resurfaced. My peers still believed that I was faking this bizarre situation. Would I really go through countless doctors' visits, misdiagnosis, 44 days on crutches, physical therapy, a blood test, X-ray, and MRI just for attention? My classmates thought so. And the fact that my friends didn't believe me tore me up emotionally.
My peers taunted and teased me, so I threw myself into my physical therapy program and continued my schoolwork at home. I thought that staying at home would be better…healthier. If I did go to school, I tried my best not to interact with my classmates, especially my "friends." Kids at school would run up to me in the hallway and poke me, just to see me in pain. I regretted showing them the presentation; it was supposed to help me, not turn me into an object of fun.
A couple of weeks had gone by since my diagnosis and it was time for spring break. My family and I drove to the beach; we thought that a sunny and relaxing holiday would be enjoyable. My holiday was full of stress. My guinea pig, whom I brought along on every vacation, died while on my lap on the way to our destination. Once again, my pain levels soared. Aphrodite, my guinea pig, was my rock during my struggle with RND. I could come home after a terrible day at school and be comforted by a giant ball of fur who just sat and listened to my problems. I was devastated to lose one of my few friends.
We held a family funeral for Aphrodite and buried her in a forest near the beach. My mother, trying to comfort me, read me a story. As she was leaning over to turn the page, she felt a lump next to her arm. She was diagnosed with breast cancer on April 1, 2010. I was worried about my mother, sad about the loss of my animal companion of four years, and terrified to go back to school. My pain levels were insane.
My classmates found out about my mother's illness pretty quickly. My peers started asking me questions, again. This time, however, they were about my mother. "So, is she bald now?" "Is your mom going to die?" And of course this phrase: "Oh, my grandma/grandpa died of cancer." My mother was just diagnosed with a life-threatening illness — I didn't want to hear about death. I usually just said, "I'm sorry for your loss," and walked away.
I finished fifth grade and graduated elementary school in June of 2010. The school staff gave me light handshakes as I walked across the stage with my certificate. I was very grateful that they were conscious of my pain disorder and sensitivity to touch, but the handshakes still hurt. That day was the last time I saw most of my classmates. My family and I decided that an online school would be a better option for the following school year.
I spent the weekend after graduation with my Girl Scout troop in Niagara Falls. The mist from the falls stung my skin; the branches in the forest at the Boy Scout lodge we stayed at scratched me like daggers. It wasn't a pleasant trip. My troop leader was extremely supportive and let me call my mother whenever I needed. She also explained my situation to the other troops who participated in our adventure. Many of the girls did not understand RND. My troop, like my classmates, had been briefed on the subject months ago. Unlike my classmates, however, they did not taunt me. The girls from other troops did tease me. I shared a bunk with a girl who'd randomly shine a flashlight into my eyes and say, "Does the light touching you hurt?" before poking me. It got annoying, so I made sure to not be bunkmates with her for the second night.
I returned from my trip the night before I entered the Children's Institute of Pittsburgh (CIP) inpatient RND program. I had already been trying to mimic their program; I was in intense physical therapy and had been seeing a psychologist for pain management as well as practicing desensitization techniques. CIP was nothing like what I imagined; it was extremely rigorous. I started my mornings with a very tough and strict physical therapist. Every day, she pushed me past my limits and required me to beat my best times for all of my exercises. It was pretty easy for the first couple of days; it's not hard to beat a record of two minutes to "run" to the end of a hospital hall and back. As I started getting better, though, my records became harder and harder to beat. I was physically exhausted and emotionally drained after a session with this therapist.
After physical therapy came psychology. I was placed with a calm and mellow psychologist. I'm pretty sure that the hospital did that on purpose…tough exercise with an uncompromising physical therapist followed by a relaxing session with a good-natured psychologist. I enjoyed speaking with my psychologist; he really helped me release stress and manage my pain. This pleasant visit was followed by lunch where the RND patients ate together in the cafeteria, occasionally joined by the head nurse of the hospital. She was extremely supportive and was another great person to speak with throughout the program.
My occupational therapist was pretty laid-back compared to my physical therapist. She'd still push me, though. That was the point of this program: power through pain. Upon entering the program, I was given a bracelet that said "power through pain" to encourage me to finish strong. To end the day, we had group pool therapy. The water felt good; I felt more free in the pool than on land. Group therapy sessions also gave me a chance to interact with the other RND patients. I was the youngest patient in the group. My roommate, who was two years older than me, ignored me. Although it was difficult to be a tween among teens, I've kept in touch with one very special person from that program who was able to look past our five-year age difference. Despite my youth, my perseverance paid off. Two of the teens dropped out of the program while I powered on.
Beth, the head nurse, gave me advice and acted as a friend when I needed one. I spent my spare time doodling inventions in a journal. She listened to my ideas and even asked for my autograph the day I was discharged, "just in case you become famous." I have kept in touch with Beth as she played a crucial role in me overcoming RND. Beth understood the disorder, cared about her patients, and pushed me to finish.
I finished CIP's inpatient RND program in two weeks. It was hard, but I powered through the pain. I was sent home with a list of exercises and many outpatient physical therapy appointments. My pain has never gone away — it is there 24/7 —but CIP helped me learn how to deal with it. I have been enduring this nonstop pain since I was 10 years old, but experienced four minutes of being pain-free on March 25, 2014. I recently started physical therapy and aqua therapy again because my pain levels have been high. I am experimenting with a new form of treatment, H-Wave. Dr. Cassidy, my current rheumatologist, suggested stimulation therapy. My physical therapist let me sample some units and H-Wave seemed to work the best. I've been using a machine for the past five months and it seems to be helping. My pain is not gone, but I have not had as many severe flares.
I deal with RND everyday, but I refuse to let it hinder my life! A couple months after my treatment at CIP, I met Nina Marie Barbuto. Nina is a remarkable mentor who has changed my life in so many ways. When I was 12, Nina founded Assemble, a non-profit art+tech space in Pittsburgh. After learning about my experience with Scratch, the programming language I taught at my old school, she offered me an internship and teaching position at Assemble. I eagerly accepted and have been a teen teacher for the past three years. This opportunity provided me with an outlet to overcome RND. I have reached over 1,000 underserved students throughout the Pittsburgh area with my computer science lessons. I even started my own program, Teens as Teachers, which empowers other teens to become teachers. I love seeing the joy on my students' faces when they finish a project and realize their potential in programming; I would like other teens to experience this sense of accomplishment as well.
I have been attending Agora Cyber Charter School, an online school, since sixth grade. Online school gives me the freedom to teach and provides an environment in which I can excel academically. I was able to take advanced courses and I will be graduating a year early. I have amazing teachers at my school who truly believe in me and help me succeed. My AP World History teacher last year, Mr. Scheirer, helped my friend Alana and me start a project to help victims of human trafficking. Kids of all ages in my school mailed cards of encouragement to the A21 Campaign, a nonprofit that helps victims of human trafficking. Because of Mr. Scheirer, my friend and I were able to collect nearly 400 cards and lead a successful humanitarian project. Mr. Scheirer is starting a social justice club at my school in the fall, and he has invited me to help run it. Dedicated teachers like this inspire me to push through and ignore the pain.
I have also met some wonderful friends through my school and my various extracurricular activities, friends who understand RND and genuinely care. I lost a lot of friends because of RND; it restricted my physical abilities and hindered my everyday life. I have overcome all of these struggles and now enjoy a well-balanced life with friends and family whom I love, an excellent school environment as well as a meaningful job. I wouldn't wish this disorder on anyone, but I do believe that it pushed me to strive for the best in life. I don't let much get in my way anymore; I power through.