Can't Someone Fix What Ails Me? 21 Stories of Chronic Illness

By Nikki Abramson and Barbara Hynes-Tomczyk

The two people who compiled (and contributed) their own stories have over a dozen chronic illnesses between them. They and the other 19 writers want you to know what it's like. How do they, as "chronics," deal with walking into a medical office and being called "odd" or "complex" or "interesting?" How much should they tell others—and whose business is it anyway?
 
Where do they find the patience to try medication after medication and deal with the unpleasant side effects? How do they stay positive in the face of never-ending symptoms and no cure? How do they deal with the fact that they seem okay, and look great on the outside, while silently suffering inside? 
 
As they seek answers and solutions, they ask: Can't Someone Fix What Ails Me? It's all very tough to handle. As you read these stories, see the writers' resilience, strength and hope.

• Language: English
• Publisher: Barbara Hynes-Tomczyk
• Release date: May 5, 2020
• ISBN: 9781393758273

Nikki Abramson

Nikki Abramson is passionate about encouraging people to find hope and achieve success in their life journey. She is a Korean American adoptee who battles several rare and severe medical conditions and is overcoming many obstacles. Nikki resides in Minneapolis, Minnesota, with her parents, younger brother, and two cats. Nikki is a proud alumnus of International School of Minnesota (Eden Prairie, MN) and Bethel University (St. Paul, MN). She holds a B.A. and teaching license in elementary education, early childhood, and computers, keyboarding, and technology. Ms. Abramson is a performer and teaching artist, teaching others acting, improv, and choreography. She also has a company, Renew Hope, LLC, that offers motivational speaking and life coaching. Her desire in life is to change the world by inspiring others through her story, changing one person at a time.For more information, you may contact her via her websites at www.nikkiabramson.com or www.renewingyourhope.com.

Book preview

Can’t Someone Fix What Ails Me?

21 Stories of Chronic Illness

Nikki Abramson

Barbara Hynes-Tomczyk

NB Productions

2020

Table of Contents

Title Page

Endorsements

Copyright Page

Dedication

Tribute to Nikki Abramson • 1986 – 2020

Acknowledgments

Foreword

About the Story Collectors/Authors

Introduction

1 The Never-Ending Treadmill

2 To Be Continued . . .

3 I Am Allergic to Life

4 The Difference Between Being Selfish and Self-Care

5 My Dystonia Story

6 Just Another Brain Surgery

7 A Caregiver's Discovery: A Story About Joy and Laughter

8 A Miracle . . . And a Blessing

9 The Truth of PTSD: Not Everything Will Be Fine Again

10 Shingles . . . A Curse from Childhood Chickenpox

11 The Chain of Pain: Extreme Migraines

12 Learning to Love Life, Again

13 Always in Pain: Battling to Find Some Normalcy

14 If the Rest of Me Could Speak

15 Changing Pace

16 My Story: Beyond Spousal Depression

17 Tale of a Dual Life

18 The Tattooed Lady

19 Pain and Peace

20 Fighting Off Challenge After Challenge

21 Chronically Happy

22 Don't Judge Me

Discussion Questions

Few of us think about how we would react if we were to be diagnosed with a chronic illness. When we hear about someone dealing with a chronic illness we have sympathy and perhaps pity, but we don’t really understand. How can we? It’s beyond the imaginable for most of us. This collection of stories assembled by Nikki and Barb provides a glimpse into the challenges and struggles that we can only begin to imagine. These are stories of strength, resilience, perseverance, and commitment. They are a testament to hope—the hope to find a livable, enjoyable life despite the daily struggle. They are a testament to strength—the strength to wake up each day despite knowing the difficulties to face. And most importantly, they are a testament to love and community which are perhaps the most critical components needed for support and perseverance. 

– Heidi Burch, Disability Services Professional

Real life stories of living with the realities of chronic, serious health conditions with tips on how the contributors found ways to cope and have meaningful lives.

­– Becky Henry, CPCC, Speaker, Coach for Eating Disorders,

  Author of Just Tell Her to Stop: Family Stories of Eating Disorders

Copyright © 2020 Nikki Abramson and Barbara Hynes-Tomczyk

All rights reserved

No part of this book may be reproduced in any form whatsoever, by photography, or any other means, by broadcast or transmission, by translation into any kind of language, nor by recording electronically or otherwise, without permission in writing from the author.

Designed by Sue Stein

Cover images: Pixabay.com, Shutterstock.com

NB Productions

Dedication

To all those who suffer from chronic illnesses, disabilities, conditions, syndromes, pain, diseases, or medical issues—and also to their caregivers.

To those in the medical field who care for those patients—we hope this will give some enlightenment and help in your field.

Tribute to Nikki Abramson • 1986 – 2020

By Barbara Wilson

Our daughter, Nikki, looked for opportunities to teach people what it meant to be living with disabilities and chronic conditions. She worked toward this goal with great energy in spite of living in a medically fragile body.

Nikki and Barbara Hynes-Tomczyk worked on this book as Nikki recovered from a surgery that successfully removed a cancerous abdominal tumor. She experienced a large number of post-surgical complications that tripled her medications and resulted in many trips to the hospital. In spite of these obstacles, Nikki never gave up on this book. She continued to work on it in spite of constant pain and numerous doctor appointments; however, she did not live to see the book in print.

Her last days illustrate the risks that people with chronic illnesses face in the medical system. Their lengthy medical records can slow the diagnosis of new medical problems.

Nikki had seen some improvement in her health as the book neared completion. Several of her complications resolved, she was able to go off various medications, and she was getting stronger. However, just as the book was ready to be formatted for printing, she began complaining about a new problem in her intestinal tract. She had experienced pain in her abdomen since the surgery, but this pain was more severe. We saw a gastrointestinal specialist about both her continuing and her new problems. Testing was planned, but the earliest follow-up appointment for these tests was three months away. Nikki’s intestinal symptoms worsened shortly after the doctor visit. She was weak and had nausea and severe diarrhea. We took her to the emergency room where they admitted her to the hospital because of low blood sodium—a problem we thought had been resolved. The doctors stabilized her sodium level and did a few tests to look for the source of her diarrhea, but all the tests came back negative. Nikki was discharged two days later on Sunday without an explanatory diagnosis. On Monday, we tried to message several of Nikki’s doctors without success. At that time, I wasn’t too worried since we had an appointment with Nikki’s general practitioner on Thursday. Unfortunately, that timing turned out to be too late.

Nikki experienced severe pain all day Monday and Tuesday. She canceled everything on her schedule and ate very little, but on Wednesday was able to eat pasta with red sauce for lunch. She was halfway through the meal when she was hit with another bout of diarrhea. I asked her if she wanted me to save her food and was happy when she answered, Yes. A minute or two later, I heard her throwing up in the bathroom. I rushed in to a terrifying sight. Red vomit covered the floor and was splattered on the walls. It was too red and too much to be the pasta sauce. When I realized it was blood, I was terrified! I ran to grab my cell phone to call first my husband, Alan, and then a retired doctor friend. As I called, Nikki began throwing up more blood. The doctor told me to call 911. As I waited for everyone to arrive, Nikki told me something felt different inside of her. Her feet turned blue and went numb. All I could do was clean her up and throw towels over the blood.

Nikki was no longer vomiting when the ambulance arrived so they drove away without lights and siren. However, part way to the hospital, Nikki’s blood pressure dropped and the siren went on. She went straight to one of the best-equipped rooms in the emergency department of a nearby Level 1 Trauma Center. As they gave her fluids and ran tests, she seemed to stabilize again. Gastroenterology was consulted to perform an endoscopy to look for the source of the bleeding, but before this could be done, Nikki threw up large amounts of blood two more times. Her blood pressure dropped to 37/17 and plans changed. A blood transfusion was started. She would be going straight to an operating room.

When Nikki left for surgery, Alan and I feared we would never see our daughter alive again. Nikki had a rare genetic condition that made anesthesia riskier for her than for others. The doctors had taken a month to prepare for her previous surgery. Our only hope was that these doctors would follow the protocols that had been established earlier since many commonly used drugs and anesthetics could kill Nikki.

To our relief, Nikki made it through the surgery, but the diagnosis was disturbing. She had two previously undiagnosed ulcers in her small intestine. The larger ulcer had caused an arterial bleed. Unfortunately, there were complications after this surgery so Nikki was taken back into the operating room for a second time only seven hours after her first surgery. Her fragile body could not handle the stress. She was communicative for a few hours after the second surgery, but her heart stopped around 8 p.m. during preparation for emergency dialysis. The Code Blue team was able to restart her heart, but her body had none of the usual fight left in it. Her blood pressure began to drop despite all the doctors’ efforts. After enduring the physical trauma of two surgeries and resuscitation, Nikki left this world March 13 while listening to her favorite music as Alan and I held her hands.

Tribute from Barbara Hynes-Tomczyk

March 13, 2020

It’s that time of evening

When the world outside my window is blue

Blue, your favorite color,

The evening of the day you died

There’s a fracture in my world

And in the worlds of your friends and family

You didn’t expect to die

When we spoke a few days ago

You had so many plans for your future

You were only 33

I sit alone, staring out the window at blue

On the evening of the day you died

Sometimes poetry seems to be the only way I can speak when there are no words. Nikki and I knew each other for several years, and this book was our second sizeable, creative project together. We both loved collaboration and straightforward talk. We both loved building and bridging on each other’s ideas.

We were friends and associates and spent long hours and many late nights in deep conversation about this book, chronic illness, life, love, and struggles. We were both theater people and dealt with multiple chronic conditions, so mornings were not our best times. Those midnight calls sometimes went on for hours.

Every decision and every detail of this book was approached with respect and love while we worked together on this. Despite our age difference, we worked well together developing, discussing, and critiquing each other’s ideas. We communicated with the many writers who have contributed to this book. The stories and the real people behind each one made us look closely at our own ways of dealing with physical pain and the many life changes that chronic illness required us to make during our lives.

Nikki was always honest, tough, forthright, committed, and open in our relationship. I have heard much the same words used by many others who knew her. Her enthusiasm for creative projects in theater, writing, and music never wavered. Even on her wheelchair days—and this last year was filled with those days—she was up for any challenge. Her pain level was often quite high, yet she was totally present and authentic each time we met or talked.

Life, after cancer surgery last year, constantly asked her to make enormous changes, like a sudden inability to walk or the need for help to transfer from one place to another. She was fiercely independent, yet, as a result of surgery, she had to cope with help getting dressed, being transported, and dealing with her many new medical issues. Accepting help is such a difficult thing to acknowledge, but she dealt with it head on and with great grace and dignity. Nikki loved to eat and share meals with friends and family, though often she had no appetite or was unable to eat what she loved. Every day brought new medical challenges that she faced with remarkable strength and focus.

Nikki and I had robust discussions about the word hope. She personally modeled hope all the time. I sometimes argued that the reality of chronic disease is not always hopeful. Despite occasional differences of opinion, we formed a production company and planned for the possibility of new future collaborations. I guess we were both living with hope because Nikki won that discussion!

I will carry her hope and cherish our friendship forever. This book is a product of her beauty and her hope. It brings some closure to a project we loved and worked on together.

Your spirit, energy and grit

Are a part of us now.

Shared with all.

No longer contained in earthly you.

Spread over us

Like the color blue.

– Barbara Hynes-Tomczyk

Acknowledgments

Special Thanks to:

All the authors in this book. Thank you for your contributions that added diversity and interest to the entire project.

Connie Anderson, we could not have done this without you. We are grateful for your editing and content suggestions, and your help every step of the way toward making this book happen. ([e-mail])

Joanne M. Hynes, Nurse Practitioner and Doreen Maggie McEvoy, MD, for writing our forewords. Your expertise and support is invaluable.

Sue Stein, Book Designer, for your terrific work in cover design, formatting and publishing. ([e-mail])

Barb Wilson for your time and incredible eye in proofreading.

Barbara Burchill for your dear friendship, time, and editorial input.

The Women of Words writers’ group for helping us with title and cover suggestions, and other support.

Heidi Burch and Becky Henry: We appreciate your time, talents, and willingness to endorse our work.

Renee Raming for her expertise in the legal field.

Julie Finch for her proficiency with answers to legal questions.

Pat Foley for her proofreading.

And a special thanks to all those that help us in the medical community.

Foreword

Living with an invisible illness makes you feel like you’re

constantly having to prove that your pain and struggle

is real because no one can see it.

Joanne M. Hynes

As a Nurse Practitioner, I currently work in a Family Practice clinic where I have diagnosed and treated thousands of patients for over 25 years. I have seen the spirit of people with chronic illness who not only survive, but thrive. I have also seen people who do not do as well. The difference is striking. Each person’s strength and determination makes the difference.

What makes some people with chronic illness more resilient? Even after many years in the medical field, I’m just not sure. Is it their past? Lifestyle? Economic status? Family background? Spirit? None of those categories seem to answer that question. The answer seems to be about making a sometimes-daily choice to forge on and do the best one can.

The 20-plus stories in this book show ordinary people—people like you and me—who somehow manage to go on with their lives despite possibly having catastrophic health changes that impacted their lives.

Chronic pain doesn’t make you stronger, it doesn’t build char- acter—and it doesn’t teach you anything, but it does hurt!

These patients look for answers even when there are none to be had. They find a way to continue. Medical science doesn’t always have an answer or cure. These ordinary people have an extraordinary ability to move ahead and continue their journey while carrying this extra burden. This requires a strength that’s not always available every day.

We can all learn a great deal about living fully, whether as medical providers, educators, people with chronic illness and their loved ones, as caring humans, from reading these fascinating and often inspiring accounts of their lives.

Joanne M Hynes, BSN, RN, CNP, has spent 42 years in the medical field and has a wide range of experience with people of all ages. She began first as a Registered Nurse in a hospital setting for sixteen years, and later worked  in Public Health and at an urban walk-in clinic for seven years. After leaving the clinic setting she traveled locally doing home care and hospice nursing. After becoming a nurse practitioner, she spent the last twenty-six years providing medical care in a family practice setting.

◆ ◆ ◆

From a Doctor’s Point of View

I was honored when Nikki Abramson asked me to contribute to this book. Although I have been her primary care physician for a relatively short time, Nikki and her family have taught me invaluable lessons about what it is really like to live with chronic illness. Activities that most of us take for granted can take an immense amount of planning, sacrifice, resources and resolve for others.

As I read the stories in this book, I noticed a few common themes:

It can take some time to get to a diagnosis.

Living with a chronic illness is difficult—especially one you cannot see.

Some patient/doctor relationships do not work well.

I wanted to address these issues from my perspective as a physician; not to defend or deny, but simply to provide some insight into the practice of medicine.

Patients are often disappointed when they do not receive a diagnosis right away. Medicine is complex, and doctors consider many factors in order to make a diagnosis. I suspect most doctors would prefer to defer giving a diagnosis until they were sure or quite sure of their decision. Providing the wrong diagnosis to a patient could obviously be devastating.

In medical school, aspiring doctors are taught to take a detailed history of the present illness, consider the patient’s contributing information (age, gender, family history, social history, past medical history, etc.), and then develop a differential diagnosis—a list of diseases/conditions that would explain a patient’s symptoms. Is it infectious? Genetic? Metabolic? Psychiatric? Musculoskeletal? Autoimmune? Neoplastic (cancer)? A side effect from medication? Something else?

Very specific symptoms usually help a doctor generate rather short lists, and do so with relative high confidence. However, nonspecific symptoms, especially those without a clear or definitive accompanying history may be difficult to assess. Thus, the differential diagnosis list can be quite long. In medical school, the fictitious patients we evaluated often presented with vague and poorly defined symptoms. It was a contest among competitive medical students to see who could come up with the most diseases no one had ever heard of before, diseases that would likely only appear on the licensing board exams, but never be seen in one’s career. This process could take hours for a single assignment of one patient.

In practice, physicians consider the information at hand and ask further questions to help rule in or rule out possible diagnoses. Ultimately, doctors are taught that common things are common. Thus, the reality of practicing medicine is that while some symptom constellations can have a very long differential diagnosis, most of the time, diagnoses that are common in the population are the right answer. We are taught in medical school: When your hear hoof beats, think horses, not zebras.

Next, doctors identify which tests to order, if any, to confirm a diagnosis—some diagnoses can be made simply based on history and physical exam results alone without any additional tests. When the answer is less clear, and the history and physical exam are not enough, we have to develop a strategy to reach a diagnosis. On paper, it is easy to say, Order everything. However, a patient has only so much expendable blood and tissue, and some tests are potentially