No, It Is Not In My Head: The Journey of A Chronic Pain Survivor From Wheelchair To Marathon

by Nicole Hemmenway

Overview

At seventeen, Nicole believed her life was just beginning. She was a senior in high school looking forward to college and living on her own. However, all her dreams vanished the moment she became injured.

Diagnosed with the neurological and chronic pain disorder, complex regional pain syndrome (CRPS), mainstream medicine viewed her pain and symptoms as being untreatable and incurable. She was living a nightmare.

With no use of her right hand and minimal use of her arm, she depended on massive amounts of narcotics to survive each day. Yet even that could not control her agony. The crippling pain was so paralyzing that she faced periods where she was bed-ridden or wheelchair bound. All she had to hold on to was hope. Hope that her miracle would someday arrive…

            No, It is Not in My Head: The Journey of a Chronic Pain Survivor, will spread hope, present answers and allow others to believe in the unimaginable. It is not one young woman’s story back to health, but a culmination of our stories back to health.

 

Product Details

ISBN-13:	9781600376993
Publisher:	Morgan James Publishing
Publication date:	04/06/2010
Pages:	252
Product dimensions:	7.50(w) x 9.10(h) x 0.60(d)

About the Author

Nicole E. Hemmenway understands chronic pain. Living half her life with the neurological and chronic pain disorder, Complex Regional Pain Syndrome, she overcame the “disabled” stigma to prove miracles happen. Although the disease went into remission for nearly four years, it returned with vengeance during the beginning of her senior year of high school. A fluke incident causing her to pull two tendons in her right hand resulted in a long and painful nine-year journey through the medical system.

While life became lonely, tiring and redundant, she refused to believe she would be sick forever. She refused to accept the medical profession had explored all avenues and hope in a greater, pain-free future was lost. By no longer allowing the pain to define her identity, Nicole empowered herself to become proactive. Taking control of her own life was the reason she found treatments that fit her lifestyle and body.

By experiencing firsthand the great strides and pitfalls of the medical profession, Nicole gained valuable life lessons of expectations and rejections. She has lived through the pain, the struggle, the hell. She overcame what doctors told her was a hopeless situation and became a survivor.

Nicole views her pain as a gift and feels privileged to have had access to many medical procedures and therapies others are not. However, with this privilege comes the responsibility to bring to the forefront awareness of the many resources available for the 75 million people living in chronic pain throughout this country.

She has worked in conjunction with the National Pain Foundation, a non-profit organization dedicated to advancing functional recovery of persons in pain through information, education and support, for seven years. Writing articles for their website and speaking at various medical conferences around the country on their behalf has been a joy for her. She sees every talk as another way to start dialogue between doctors, patients and the health industry.

For the past eighteen months, she has been working with best-selling author and renowned writing instructor Tom Bird. While Nicole has been a writer-at-heart her entire life, using Tom’s unique method enabled her to unleash the writer within her. She turned her journals depicting her chronic pain experiences into “No, It is NOT in My Head: The Journey of a Chronic Pain Survivor.”

Nicole has committed her life to becoming a leading voice in chronic pain awareness and an advocate for patient rights. “No, It is NOT in My Head: The Journey of a Chronic Pain Survivor” will be her first published book with a companion workbook to follow. She plans to write two other books on chronic pain as well.

 

Read an Excerpt

CHAPTER 1

The Incident

Leaving the starting line, my thoughts drifted to August 28, 1998. The Junior-Senior Welcome Dance was supposed to have been a highlight of my senior year in high school. Instead, it became the infamous evening that my life changed course.

I remember the dance itself was nothing out of the ordinary. I stood in the warm courtyard of our brother school giggling to my best friend Meredith as we heard our favorite new song. I was just so excited to be a senior. This was going to be my year to shine, live and be happy.

Even today, the memory of raising my right hand to give her a "high five" haunts me. Where did it all go wrong? How had our hands missed causing my ring and pinkie finger to make direct contact with her palm?

I felt the throbbing in my hand immediately. While I tried to shake off the pain, it continued to burn as my hand changed colors. I knew I was in trouble once it became difficult to move my fingers. To see my hand turn tomato-red and close into a claw-like position within thirty minutes was horrifying. I went into shock: this could not be a good sign.

That evening I hardly slept. Instead, I tossed and turned while praying for the burning to end. By morning, my eyes were puffy and red from all the crying ... and the pain was worse. The next few days were extremely tough on me as I struggled to juggle school and doctor's appointments. Even though I had understanding teachers, I could not manage the stress of classes and a pain that worsened as the day progressed. Life as I knew it was over.

It was hard to comprehend how a span of seconds could change my life. How had I gone from being a normal teenage girl attending football games and dances to an agonizing pain patient visiting specialists and therapists that quickly? I felt as if the world had collapsed on top of me. Soon I started coming to school with my shoes untied and my hair undone. With the sharp pains making it difficult for me to complete homework or study for upcoming tests, my grades plummeted. I could no longer deny the toll the pain was taking on my entire body.

Even if I found a way to manage the searing agony, I could not compensate for the lack of my writing hand. Not being able to participate or complete my mandatory workload forced me to drop Calculus and Physics. The school graciously assigned me filler classes like study period and library knowledge so I would still be able to graduate. While I should have been grateful for these changes, I was devastated. I saw myself as a failure. The carefree person who weeks earlier had been naively unaware of the ways of the world was gone. I felt lost among the healthy. My life had fallen apart.

* * *

As I started to visit a myriad of doctors in the long and dreadful search for answers, every visit seemed to follow a similar pattern. It began with me sitting for what seemed like an eternity filling out tedious paperwork that mostly went unread by the doctor. Waiting became a huge part of my life. I spent hours in cold, unwelcoming waiting rooms with year-old magazines scattered on chipped coffee tables. It did not matter that my swollen hand looked as though I suffered an allergic reaction to shellfish. It did not matter that I had to live with the pestering and tingling sensation of a pack of bees swarming under my skin. I still had to wait with the other weary patients while dreading what was to come.

"Thank you, Dr. X for squeezing me in and seeing me on such short notice." A nod in my general direction was the only acknowledgement I received as they quickly glanced at my chart.

"What seems to be the problem? I hear you are experiencing a lot of pain in your right hand?"

Finally looking up, Dr. X would zone in on my arm and approach the cold table to reach for my hand. Because no one ever asked if it was all right to touch my hand, I found myself hitting them or pulling my arm away so I would not be hurt. While I viewed these swats as a protective measure to keep the agonizing pain at bay, they did not.

I could tell by the doctors' condescending tones and apathetic manners that my antics annoyed them. It seemed they had pre-determined my problem even before entering the examining room. Therefore, I did not look forward to explaining the incident, the unrelenting pain and the loss of mobility. Nevertheless, I described how Meredith and I tried to give each other a high five at the dance, but our hands had missed.

An uneasy silence filled the room as Dr. X looked perplexed. "What do you think is wrong with me?"

While I waited for an answer, I mindlessly thought about the pain that would not go away. Ever since the moment my right index and pinkie finger smacked Meredith's left palm, I had been in extreme pain and unable to move my fingers. It had been weeks since the incident, and the pain kept escalating. Panic now took over, as I would rock back-and-forth on the steel table. I wondered how my life got so far off-track. This was my senior year. I was supposed to be having fun with my friends instead of attending numerous doctors' appointments. I was supposed to be a teenager and not having to deal with grown-up issues.

What would I do if my hand never opened? There was no way I could go to college and expect my roommate to button my pants or tie my shoes. I was scared. With the stress becoming more than I could handle, I prayed this doctor would be able to help me. Frightened by the quietness of the room and the possibility of being ill, I would always ask one last question — "Was this RSD?"

Reflex sympathetic dystrophy (RSD), now known as complex regional pain syndrome (CRPS) was a neurological and chronic pain disorder that affected the nervous system. It had been four years since my life turned upside down due to an ankle sprain. I was in the seventh grade playing a recess game of basketball when I went up for a rebound and accidentally landed wrong on my left ankle. The doctors believed the sprain would heal quickly but after three months of painful suffering and limping, I received the RSD diagnosis. Luckily, the disease went into remission two months later after one epidural nerve block. Yet the unusual symptoms and unexplainable pain were two huge red flags that it returned.

RSD had already changed my life forever. It was the reason I could no longer play sports and why my body responded differently than most people. A simple stubbed toe or sore throat would cause me agony. Knowing it could take me twice as long to recover from a simple cold or flu made me constantly conscious of the disease. However, I was adamant the RSD would not change my dreams and aspirations. I could not play sports but I still could have fun. Despite this mysterious disorder affecting my life, I was not going to sit back and watch life pass me by. Except, what if it had returned? Was it possible this was RSD?

The anticipation of a diagnosis was nauseatingly painful for me. It was all that mattered and my life hung in the balance. As soon as I heard the doctor clear his throat, my heart would stop beating. I prayed this visit brought me answers.

"From the symptoms you manifest, it is too soon to diagnose this as RSD. You probably sprained some tendons and the combination of swelling and discomfort is causing the immobility in your fingers."

Receiving no helpful information left me emotionally and mentally wounded. Why was I hurting so badly and unable to move my hand? Feeling the problem had to be more serious than some sprained tendons, I could not let the issue go. "So you really do not feel this is RSD? I keep asking because the pain feels a lot like nerve pain, and I just don't want ..."

It was then that I would be abruptly cutoff mid-sentence to hear a drawn out monologue about how pain was a normal response to many different ailments besides RSD. He was the specialist who studied these problems. I would just need to trust his assessment and continue occupational therapy for a couple more weeks.

While there might be a few slight variations, all my appointments ended this same way. There were no concrete answers or end in sight. Doctor after doctor would ignore my symptoms and write off my complaints as a simple sprain and a low tolerance for pain. For the next six weeks, I continued to visit doctors without receiving adequate help. I became discouraged that no one believed me; I just needed the unrelenting torture validated.

CHAPTER 2

Held Suspect

I now became desperate for answers. I needed an explanation as to why the burning, stabbing pains grew worse by the day and why my hand had frozen into a tight fist. I wanted assurance this agony was not the neurological and chronic pain disorder I had successfully overcome four years prior. I needed to know I would be okay.

Therefore, when I finally saw an orthopedic surgeon in mid-Fall, I believed he would rally around me with support. Dr. Gloom — my nickname for him because he always spoke in a monotone voice — was a middle-aged man known in the community for being knowledgeable in the field. While his apathetic and indifferent demeanor made him unlikable, I had hope he could shed light on my pain.

Dr. Gloom had a large ego and a strange bedside manner. He would enter the room ignoring the patient only to focus on the afflicted limb. I remember that first visit vividly. With his full attention directed toward my right hand, he immediately grabbed my arm to examine. Poking a sharp metal apparatus against my inflamed skin caused me to squirm and wince on the table. It did not bother him that I moved wildly back and forth while pleading for him to stop. He would not let go. Not until I started banging on the table with my left hand did he withdraw his strong grip.

Obviously displeased with my outburst, he questioned my pain like every other doctor. While he agreed I had some of the more common symptoms associated with RSD, Dr. Gloom felt it would be a premature diagnosis. In order to observe my progression he requested more physical and occupational therapy. To help ease the pain, he decided to conduct a series of nerve blocks.

I was living a nightmare. All I wanted to know was why my right arm felt as if it were on fire. At least if it was RSD, I knew I would eventually get better. Sadly, no one in the medical community was willing to hear me or validate my pain. My life was spinning out of control and I did not know how to regain order.

I knew I had to stay strong and positive because the nerve block had been a success for me in the past. It was a simple procedure by medical standards. An anesthesiologist injected an anesthetic into the ganglion nerve to block the firing of pain fibers. These blocks were quite common in the pain world so I really had no reason to worry ... but I did. It did not matter that I had undergone a similar procedure once before. Thinking about a foot-long syringe inserted in my neck still petrified me.

* * *

I thought my heart was about to beat out of my chest when I put on the hospital gown. Why did they make such sheer gowns when the rooms were so cold? Seeing two men in stiff white coats appear at the door sent chills up and down my spine. As they begun using unfamiliar phrases to explain the procedure, I became more paranoid and confused.

They would need to press on my neck in order to locate the stellate ganglion nerve. After marking the spot with a permanent pen, they would inject an anesthetic along the surface of my skin to numb and dull the area. Then they would administer the block, a mixture of lidocaine and bupivacaine, known to ease nerve pain and temporarily slow the firing of the nerve fibers. While I might feel a slight burning sensation, find it difficult to swallow or feel deep pressure, these were normal responses and I should not worry.

I continued to sweat as the IV attached to my left arm released a muscle relaxant. There were so many questions I wanted to ask but did not know where to start, so I just stared at the bright fluorescent lights on the ceiling. My mind raced as the anesthesiologists opened all the sterile packages. Why had I agreed to this? To think the slightest twitch could lead to catastrophe made me hold my breath and refrain from moving. A rush of heat flowed through my veins and I felt my body become heavier. This had to end my pain; this had to be the answer.

As one of the doctors cupped the back of my neck while using his other hand to locate the ganglion nerve, I looked at my parents. They stoically stood in the back corner of the room with permanent half-smiles etched on their faces. It was obvious they were trying to be strong for me, which made me feel guiltier. I was the cause of their grief. I returned my attention to the doctor who nodded to his colleague for the needle. This was it ...

I felt as if rose thorns had just pricked me, and then the most unexpected thing happened. My once tight, swollen fingers loosened to resemble a baseball mitt. Color returned to my face when I looked at Mom and Dad's true smiles. I believed my nightmare would soon be over. The block had worked ... or had it?

The doctors stared at each other in disbelief, but neither spoke. It seemed as if they were both downright puzzled by my unusual response. The second doctor grabbed the large needle resting on the metal tray and injected it into the nerve. I instantly felt a deep-rooted zing travel up and down my spine.

Just as I was about to celebrate the procedure's success, I learned of the doctors shared concerns. While glad to see partial mobility return to the hand, they had reservations about the diagnosis in question. Since my hand relaxed before I received the block, they thought I had clenched-fist syndrome.

It was possible some sort of stress caused my problem. Whether it be an undisclosed issue, an unmanageable problem, posttraumatic stress disorder or even not dealing with the past, they no longer felt my symptoms were RSD. That had merely been a theoretical diagnosis. With this being my senior year of high school, they believed I might not be ready for the future.

I was in shock. Were they saying I was doing this to myself? How could a person who did not know me believe he had the right to judge and belittle me because he had read my medical chart?

"Isn't it correct that the actual incident occurred on August 28?"

I glaringly nod.

"And isn't it also correct that a year ago, on that same day, your mom was diagnosed with stage-four breast cancer?"

I felt an explosion take place inside my body. Parts of me broke into tiny pieces and scattered into space. It was too late to try to piece together my self-worth, respect and character for the atomic bomb had already hit. Mustering up the courage to respond, I hastily explained that was correct, but my mom was cancer-free now. Were the doctors' implying my pain had to do with my mother's disease or me going to college?

Tears formed in my eyes as my voice begun to shake. Unable to look directly at anyone, I stared at my hand while biting down on the inside of my cheeks. I wanted to escape that room, that conversation, that life. No one believed my pain. I wondered whom my parents believed: this Dr. Know-it-All or their daughter.

Dr. Know-it-All did not want to upset me. It was just his job to explore all avenues to find out what was happening. As stress played a considerable role in the efficiency of the sympathetic nervous system, it was a legitimate answer to those unexplainable symptoms. With insufficient evidence pointing to RSD, he wanted a psychologist to determine the emotional and mental triggers behind the pain and immobility.

My follow-up with the orthopedic surgeon was only four days after the procedure. By then the pain had already escalated and the limited function I had obtained from the block was gone. I felt trapped in a never-ending black hole, which I did not know how to escape. It did not matter how loud I screamed because no one could hear my cries.

I panicked as soon as I entered the consult room. This would be the appointment when I would hear Dr. Gloom's interpretation of Dr. Know-it-All's report. My skin turned clammy, and I became nauseated. I feared the worst as I firmly pressed my arms into my abdomen. I was not ready to hear another person blame me for my own suffering. Maybe Dr Gloom would not agree with their findings ...

When Dr. Gloom opened the door, he was smugly reading over the report while fumbling for a pen in his coat pocket. He jotted down notes without ever acknowledging my parents or me. I never knew if it was intentional, but it sure annoyed me. Everything he did seemed slow and drawn out. It worried me that my future rested in his hands. If he confirmed Dr. Know-it-All's findings, I would see a local child psychologist.

"Just like I originally suspected, this does not seem to be RSD. I agree with Dr. Know-it-All and feel a child psychologist might be able to shed light on what is happening."

(Continues…)

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Excerpted from "No, It Is Not In My Head"
by .
Copyright © 2010 Nicole Hemmenway.
Excerpted by permission of Morgan James Publishing.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
Excerpts are provided by Dial-A-Book Inc. solely for the personal use of visitors to this web site.

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Table of Contents

In Gratitude vii

Harbor Half: Starting Line 1

1 The Incident 4

2 Held Suspect 8

3 Tedious Testing 16

Harbor Half: The First Three Miles 19

4 LPCH 21

5 Hospital Protocol 30

6 New Beginnings 35

7 Omaha 42

8 Returning Home 48

Harbor Half: The Miles Leading up to the Halfway Marker 53

9 Starting Over 56

10 Implantation 65

11 Desperation 74

12 Botched Surgery 85

Harbor Half: Six and a Half Miles to Go 92

13 Looking Outside the Box 94

14 Taking Initiative 105

15 St. Louis 116

16 PCU 119

17 Home Sweet Home 129

18 My New Reality 135

Harbor Half: Mile Markers 9-12 149

19 Texas 151

20 Ten 158

21 New Coach, New Approach 170

22 Unnecessary Antics 175

23 Visitors 181

24 Ultimate Decision 185

Harbor Half: The Final Mile of the Journey 194

25 Needing a Break 196

26 Glimmer of Hope 203

27 New Year's Surprises 207

Harbor Half: Finish Line 212

28 Love vs. Pain 213

29 Moving On 220

30 Changes 227

31 Overcoming Fear 234

Harbor Half: Time 242