BY EXPERIENCEA compilation of patient stories

EXPERTS

Published by Stanford Medicine

2017

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Contents

Introduction 3

Foreword 5

Belief brings relief — and sadness — after decades of doubt 7

Finding the right doctor 9

Coping with the stages of a debilitating illness 10

Reflecting on lost abilities, and focusing on what cannot be taken away 12

Lipedema: “Maybe” a gift in disguise 14

You never know someone else’s world 15

Fighting the pain; finding the light 17

Marked: My scars remind me of my purpose 18

Surviving cancer, one milestone at a time 19

Yes, chronic pain and joy can coexist 21

The beast in my belly: Living with a chronic liver disease 22

“But you look so good” 23

About Inspire 24

For space and clarity, several of the columns in this compilation were edited slightly from the versions that appeared originally in the Scope medical blog.

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IntroductionIn 2012, Inspire and Stanford Medicine began a partnership to help bring more attention to the lived experiences of patients facing serious illnesses. We were proud this past March to mark the five-year anniversary of our partnership.

Experts by Experience 2017 is our fifth compilation of columns written by patients and caregivers for the Stanford Scope medical blog.

As always, we pay special thanks to blog editor Michelle Brandt, the associate director of digital communications and media relations at Stanford University School of Medicine.

Thanks also to Professor William DeJong for writing for the foreword to this report.

Lastly, we’re grateful to the authors of these stories, and to all the contributors to the Experts series. Their words are powerful and we’re honored to share these stories. I invite you to reflect on the word cloud on page 4, created from the 40,000+ words written by guest columnists for the Stanford/Inspire series.

Together, we’re better.

Brian LoewCEOInspire

BRIAN LOEW, INSPIRE

Brian Loew is co-founder and CEO of Inspire.

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The power of the patient voiceThroughout the five-year collaboration with Stanford Medicine’s blog, columnists have written more than 40,000 words in nearly 100 guest columns. This image depicts words that appear most frequently in the columns.

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ForewordLearn from these stories, then imagine a different kind of patient.

The essays compiled for Experts by Experience 2017 speak eloquently about the extreme human experience of living with chronic, debilitating illness. The authors’ stories are deeply personal, and in many ways as varied as the human condition itself, but of course what is common to their stories has much to teach us—patients, caretakers, and health professionals alike.

We learn about accepting and coming to grips with a chronic illness and then moving forward. Chris Anselmo, who has a rare neuromuscular disease, writes of the “milestones” he passes as his physical strength gradually deteriorates. “I have had to retrain my mind to focus on the positives in life,” he writes (page 13), which now includes a MBA from Boston College. Likewise, Robert Combs “finds the light” through his art. “Start expressing yourself,” he urges others, “and by creating art in whatever form you can, you may find strength and purpose.” Katie Olmstead titled her essay, “Yes, chronic pain and joy can coexist” (page 21).

Catherine Seo has found meaning in her illness by creating a website that organizes the medical research on lipedema disorder, originally to assist her healthcare providers, but this resource proved to be of even greater value to women like her. “I now see so many gifts in disguise,” she writes, “and I dedicate what I’ve learned to help other women to help themselves” (page 14). For her part, Debbie Zelman started a foundation focused on stomach cancer (page 20). Katie Olmstead does community volunteer work.

We learn about the vital importance of social support when living with illness. Emma Opitz lives with intermittent, full-body pain, but remains undiagnosed. She writes of friends who became “like the ghosts of friends past,” leaving her in loneliness until she joined a Facebook community of people who also suffered pain and loss (page 10). Fortunately, she now has the support of “an amazing man” in her life. Zelman, once told that she had only a few weeks to live, was determined not to “let her stomach cancer win.” She writes, “My husband, children, and family were with me every step of the way, and I felt that together we could fight this.”

We learn about ignorance and cruelty. People who are physically debilitated by illness can suffer indignities from people who are rule-bound and unaccommodating or simply preoccupied with their own lives, as Renata Khoshroo Louwers’ story about a hard-edged, unsympathetic bus driver illustrates (page 15). Shanene Higgins, who has sarcoidosis, an inflammatory disease, writes about having to deal with people’s visceral reactions to her deformative facial lesions (page 18).

WILLIAM DEJONG, PHD

CONTINUED...

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We learn about the current state of medical practice. There is an oft-told tale of a physician with limited knowledge who can’t diagnose what’s wrong and blames the patient’s lifestyle, emotional state, or mental health as the root cause. “You have to want to get better,” Katherine Meizel was told, prior to finally being diagnosed with mast cell activation syndrome (page 7). Lisa Parker reports, “I’ve had more than a few medical professionals tell me they Googled mitochondrial disease before my appointment” (page 23). Wayne Eskridge coped with

five years ever-shifting diagnoses to explain his liver cirrhosis, but still had the fortitude to adopt a “healthier food strategy,” with successful results (page 22). On the other hand, Catherine DeCrescenzo shares a different experience, underscoring the importance of having a physician—in this case her husband’s neurologist—who will spend “an extraordinary amount of time,” not just to answer questions, but also to talk about living a fulfilling life while living with illness (page 9). This is reassuring story, which shows us how things can be—but unfortunately are yet to be for many patients.

Beyond these lessons, there is another common element to these stories: All of them are written by resourceful people who are highly educated and articulate. Even so, they have struggled. Now imagine a different kind of patient—low-income, poorly educated, facing daily life challenges, physically or socially isolated, with little experience in self-advocacy. What stories do they have to tell? Much of their experience will be similar to what the present authors have recounted, but in many ways their stories will be profoundly different. We have so much more to learn.

FOREWORD, CONTINUED

Through these stories, we learn about the current state of medical practice.

William DeJong, PhD, is a Professor of Community Health Sciences at the Boston University School of Public Health, where he directs BU’s certificate program in health communication and promotion. Dr. DeJong received his doctorate in psychology from Stanford University.

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Belief brings relief — and sadness — after decades of doubtAt 42, I’ve just been diagnosed with mast cell activation syndrome (also known as mast cell activation disorder, or MCAS) which, it seems, has likely been the root of my lifelong anaphylactoid reactions (or severe, life-threatening allergic reactions). It also was responsible for the postural orthostatic tachycardia syndrome that disabled me for seven years before diagnosis at 27 and for the Ehlers-Danlos syndrome that was identified as its underlying cause three years ago.I’m relieved, and grateful, and sad.

I’m immensely thankful to the expert physicians who discovered at last that something is wrong, and that it’s not me.

The worst experience I’ve ever had — worse than the most debilitating symptom — was not being believed, over and over again, for decades. It’s not only fellow females who know what I mean, but it’s especially endemic in our culture for women (and anyone marginalized) to be denied this way, to have our experiences invalidated in all kinds of contexts, including the medical. You can’t run anymore, or walk, or even stand? It’s just because you don’t exercise enough. You faint? You just don’t eat enough. You can’t eat? It’s just because you’re a worrier. Lately the media has been offering a lot of pseudo-feminist advice, enjoining us to stop saying “just” and “sorry.” But this is the problem. It’s not only that our knowledge of our own bodies is diminished and dismissed, but that our suffering is

understood to be just — and we should be sorry for it, because it’s our fault.

That kind of thinking seeps inside you. If you’re young enough not to know better, it shapes you inside. Your whole existence is eclipsed by the shame of a struggle without reason and with no scars to prove it. You’re told your tests are fine, the pain couldn’t really be that bad, there are patients with real problems in the waiting room. “You have to want to get better, Katherine.” If you cry in the office, it’s evidence that your emotional state is causing your fainting spells. So you learn to smile and lie so they won’t send you to another psychiatrist, you learn to make the joke about white-coat syndrome first when your heart rate is 120 at your yearly physical, you learn to nod and agree when you hear, “Well, everyone gets tired.”

You learn never to trust anything you think or feel.

You wish they would stop reassuring you that you’re not dying. You know you’re not dying. But when you’re 20 and can’t walk across a parking lot or make it to the front of a grocery store line (and have never eaten ice cream or pizza or chocolate), the absence of imminent death does not wholly feel like living. Then, eventually, you’ve taken all the recommendations and all the SSRIs and valium and beta blockers, done all the yoga, swimming, tai chi, yin chiao, meditation, biofeedback, acupuncture, and counseling, and you still fail,

BY KATHERINE MEIZEL, PHD

You’re told your tests are fine, the pain couldn’t really be that bad, there are patients with real problems in the waiting room.”

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you fail to recover. You fail to stand and walk and eat and sleep and work and love like a normal person, like any kind of person at all. You’re not sick after all, then. They were right; you’re just wrong.

Over the years, with each unexpected diagnosis by an equally unexpected genius physician, you slowly learn that it’s not in fact your fault. It’s incredibly liberating, and it allows you to start figuring out what you really can do to help yourself. You realize that you don’t have to overcome to be a real person. In American society you’re supposed to either die or get over it — really get over — you’re supposed to surmount any obstacles. But in chronic illness, you have to learn to pick up the obstacle and schlep it around with you. That’s easier when you know its size and shape and weight — and most importantly, its name, because names are the most believed of all things.

So belief, for me, has been a relief.

I’m immensely thankful to the expert physicians who discovered at last that something is wrong, and that it’s not me. Now, I own my experience, and a wave of nausea no longer brings a wave of guilt. I’m done with shame. Still, I’m sad, too, because millions of people — including members of my own family —are still waiting for that relief. Maybe, like mine, their disease isn’t taught in medical school yet, because the research is less than ten years old. Or they can’t travel, either physically or financially, to another state like I did to see a specialist who knows what tests to order. Perhaps they’re unable to convince themselves that there is hope, or worse, that they are worth the trouble. I want to tell them: You’re worth the trouble. You have to believe me. There is no one whose belief is more important than your own.

Katherine Meizel, PhD is an assistant professor of ethnomusicology at Bowling Green State University in Ohio.

Now, I own my experience.. . I’m done with shame.”

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Finding the right doctor Learning to live with a progressive genetic disorder — as a family

In 2006, our-primary care physician sent my husband, Joe, for an MRI to rule out a brain tumor and/or a stroke due to his clumsiness, lack of balance and slurred speech. We were referred to a local neurologist who ordered blood tests.

We were called into the doctor’s office and told the results, which revealed spinocerebellar ataxia type 2, or SCA2. It’s a relatively rare genetic condition that leads to progressive problems with movement. When we asked what we needed to do, the doctor told us to “go home and be happy.” He went on to say he didn’t know much about ataxia. I stood up, thanked him for seeing us, requested Joe’s records and told him that we wouldn’t be back.

We were hopeful that the second neurologist, at a leading research university, would be more knowledgeable. Three visits later, after giving her the benefit of the doubt and with her doing nothing other than recommending speech therapy and vitamin supplements, we realized, yet again, that it wasn’t the right fit.

The next step was the Internet, where we were determined to find an ataxia specialist. We found one we thought could work; we were hopeful, but our expectations were low.

Upon entering the exam room, the neurologist, without knowledge of the type of ataxia Joe was diagnosed with, looked Joe straight in the eye and told him he had SCA2. Time stood still for a moment, as we realized, finally, our search was over.

After the neurologist conducted an extensive physical examination, he spent an extraordinary amount of time with us, answering all our questions, asking us about our family, discussing what our hopes and dreams were and how to achieve them while Joe was still able.

From our experience, you’ll know when you “click” with your doctor and can trust him or her with your care.

Around the time we were struggling to find a physician, one of our adult daughters got married. Our neurologist suggested that she and her husband make an appointment for genetic counseling and that she be tested for ataxia, as Joe’s type is hereditary and there’s a 50 percent chance of passing it on to our children. Ultimately, our daughter followed up with his recommendation and, unfortunately, tested positive for SCA2. When she and her husband were ready to start a family, the genetic counselor referred them to a fertility facility and after months of testing, probing, injections, and emotional and physical impact, using IVF, and pre-implantation genetic testing, two disease-free embryos were implanted, thus, our twin granddaughters were born, and are ataxia-free!

The most difficult aspect of our journey is knowing our child is affected with a progressive, degenerative disorder, and unlike when she was a little girl with a skinned knee, there’s nothing we can do to fix it — it’s heart wrenching. We find strength through our faith and our daughter, who is a model of strength and courage. She fights every day to stay active and positive, and our hope is that a cure is found in our daughter’s lifetime.

Catherine DeCrescenzo is co-chairperson of the Delaware Ataxia Support Group, with the National Ataxia Foundation.

BY CATHERINE DECRESCENZO

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Coping with the stages of a debilitating illnessIt was September 19, and I was sitting on my bed in the apartment I had rented with my best friend, having just arrived back in the country after a summer working at a lab in Vienna, Austria. I was starting my senior thesis, and I was seeing a very pretty tattooed man. As far as I was concerned, life had never been better than this.

I was sitting on my bed, eyes trained on my computer screen, and a nerve in my left tricep started hurting. Over the next few hours those few inches of pain in my tricep glided insidiously down my arm, past my elbow before sweeping down my radius and lodging firmly in my hand and fingers.

I remember everything about the exact moment when my old life ended and my new life began.An emotional transformation happens when you

develop a debilitating chronic illness. The stages may look a little different for everyone, they may last for different amount of times, and – not unlike

the stages of grief – just because you’ve moved from anger to bargaining doesn’t mean you won’t feel angry again. I’m often angry. 

The first stage I encountered is the “There’s-Nothing-Wrong-With-Me” Stage, a stage that is frequently reinforced by doctors, friends and family. They said to me, “Well, your pain rating is less every time you come in, we’re pretty sure you’re getting better,” and “We all have our aches and pains sometimes,” and “I’ve seen this before, it goes away in a couple months or years.”

I am a high intensity person and was a high intensity student. I held a job, had a social life, worked hard on my academics, sat on many committees. But suddenly I was spending weeks in Percocet-induced hazes, I couldn’t drive because my hand hurt too much to hold the steering wheel, I forgot meetings and appointments, took midnight ambulance rides to the ER and knew the location of every 24-hour pharmacy within 40 miles. 

So I crawled into the “Fix-It” Stage. I became convinced that if I just knew what was wrong with me that there would be a diagnosis waiting along with a cure.  

But at some point I had seen about a million doctors for 15-minute appointments that ended before I could barely finish telling them my medical history, and I had to start traveling two hours to Boston to see better doctors. This stage wore me down.

After living in the constant vigilance and disappointment of the “Fix-It” Stage, my emotional exhaustion took hold of me, and I fell into the coma-like “Loneliness” Stage. It dawned on me that all these friends I had were suddenly starting to seem like the ghosts of friends past, acquaintances, fictional characters sending terse and dismissive text messages rather than the wonderful people

I became convinced that if I just knew what was wrong with me that there would be a diagnosis waiting along with a cure.”

BY EMMA OPITZ

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who threw me a birthday party, or made me a mix CD the semester I fled to Canada, or bought me ice cream during my last breakup.

Finally, like the rolling back of clouds after a storm, I started to emerge from the “Loneliness” Stage. One evening this winter just over two years into my disorder, I made myself a Chronic Illness Blog and an Instagram account with the same theme, and finally I joined a Facebook group.

This is the “Searching-for-Community” Stage. Suddenly, I was surrounded, albeit virtually, by hundreds of people near my age from around the world who were also sick, who also lived in pain, who had lost jobs, or partners, or friends or families because of their health. Suddenly, my glowing screen was overflowing with a group of people who implicitly trusted what I had to say about my body.

It’s been two and a half years since I got sick. What started as pain in my left tricep has turned into intermittent full body pain, extreme exhaustion and smidgen of memory loss as a side effect of a medication. Doctors have never been able to find out what is wrong with me. Of the rare disease community I am part of, a small subgroup that lives in painful mystery, always wondering if one day medical science will have the tools to figure me and the rest of us out.

Like any scrape that turns into a scar, any good relationship that ends badly, like any major life experience, you can’t be who you once were. Some days I crave the control I once had. But today I have the world’s sweetest cat snoring on my lap, an amazing man sitting next to me, one who knew I

was sick when we met and nevertheless chose to be my partner even if it means he has to do my dishes (his least favorite chore) every once in a while. And I have a new community, a community that says point blank “You don’t deserve what’s happening to you, your anger is legitimate, but you do deserve to be enveloped by happiness, support and love and we’re going to give that to you.”

Emma Opitz is the daughter of prominent pediatric geneticist John M. Optiz, MD, and fetal alcohol syndrome specialist Susan O. Lewin, MD. Emma has a degree in neuroscience from Hampshire College.

Living in “painful mystery,” hoping for science to find a diagnosis and cure.

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Reflecting on lost abilities, and focusing on what cannot be taken awayPart of the joy in raising a newborn baby is to document their developmental milestones. Parents affectionately catalog the first time their child rolls over, the first crawl, the first words, the first steps. In my own case, my mom kept a small journal that kept track of the day I achieved each of my new abilities for the first time.

As a baby, there was no reason to believe that someday my milestones would regress in the other direction.

At age 21, I pulled up after a short run because of tired legs. At age 23, I had trouble carrying a heavy object up a flight of stairs. At age 25, I experienced my first fall, followed quickly by my first panic attack. At age 27, I not only fell, but I could no longer get up on my own.

For the last eight years of my life I have experienced the symptoms of a rare neuromuscular disease called dysferlinopathy. What makes it unique among the muscular dystrophies is that its symptoms manifest in adulthood. For the first 21 years of my life I was asymptomatic. It was only because of a car accident in high school that I was tipped off that I had the disease, and even then I didn’t understand the full magnitude of what that would mean to my quality of life.

Over the last eight years, I have become gradually weaker, to the point where today I am on crutches and am starting down a new life on four wheels.It has been a difficult transition, psychologically and physically. I wasn’t a star athlete, but I was in decent shape. To go from ability to disability means that I now experience milestones that take the little things away from me that I always took for granted. For example, within the last two months getting out of a chair has become a multi-person operation. I just don’t have the strength in my legs anymore.

Part of the fear in experiencing these milestones is that I never know what I’m going to lose next, or how fast it will happen. Drying my hair with a towel and shaving without holding up my arm appear to be the next casualties, as my shoulder strength is rapidly declining. However, a devastating fall and a broken bone could mean the end of my walking days in the snap of a finger. It is a cloud of uncertainty that I have been forced to accept, but it unsettles me nonetheless.

The first time I saw a neurologist as an adult in 2009, he told me that there was so much variability in patients with dysferlinopathy that it was impossible to know for sure how fast symptoms would progress, and to what extent. When I pressed him, he told me that I would most likely be in a wheelchair someday, probably within the next

Part of the fear in experiencing these milestones is that I never know what I’m going to lose next, or how fast it will happen.”

BY CHRIS ANSELMO

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decade. It was a traumatic appointment that left me with little hope as I walked out the door.

Seven years have passed since that day, and I have experienced many milestones since then. At first they were small milestones, losses where I could compensate because I still had a serviceable amount of strength. Now, they have been getting harder and harder to deal with, as my independence is gradually being taken away from me.

With a disease that forces me to constantly adjust to reduced strength, it is crucial for me to not give up on seeking out positive milestones. I have had to retrain my mind to focus on the positives in life, and although I am not an expert at this and am prone to bad days, I am up more than I am down. Later this month I will graduate with my MBA from Boston College, no small achievement for someone like me who has about 25 percent of the energy

level of my classmates. In the last few months I’ve had speaking engagements in front of 400-500 people. These are the milestones I must focus on.

Additionally, all of this could not be possible without my family and friends. The greatest milestone for me was being born to the two best parents I could ask for.

If you’re a doctor, especially since you’re the one to break the news of the diagnosis or tell the patient that it’s impossible to know what to expect, any encouragement goes a long way. Many diseases – muscle disease included – are a sequence of lost abilities. It’s important to keep the patient focused on the milestones that cannot be taken away, or that can still be achieved. Doing so goes a long way, and it’s something I wish I realized much earlier.

Chris Anselmo has an MBA from Boston College. He has been living with the effects of dysferlinopathy, a form of muscular dystrophy, since he was diagnosed at age 17; he first began experiencing symptoms at age 21. Chris is passionate about using his patient story to help others overcome adversity. Originally from Connecticut, Chris is a 2008 graduate of Northeastern University. Follow his journey on Sidewalks and Stairwells and on Twitter: @Chris_Anselmo.

Many diseases--muscle disease included--are a sequence of lost abilities.”

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Lipedema: “Maybe” a gift in disguise

There is a Zen story about a farmer whose horse ran away. Upon hearing the news his neighbors visited sympathetically, saying, “Such misfortune.” “Maybe,” replied the farmer. Early next morning, the horse returned bringing with it three wild horses. “Such good fortune!” the neighbors exclaimed. “Maybe,” replied the farmer. The next day, his son was thrown while trying to ride one of the wild horses, and broke his leg. The neighbors again offer sympathy: “Such misfortune.” Replied the farmer, “Maybe.” The day after, military officials came to draft young men into the army. Seeing that the son’s leg was broken, they passed him by. The neighbors congratulated the farmer for how well things had turned out. And so it continued.

In 2012, I discovered I have an under-recognized and generally misdiagnosed fat disorder called lipedema. My overwhelming experience was one of relief, tempered with shock. Since puberty I had struggled with my weight. I found a self-help group in my mid 30s and finally lost 140 pounds, and I maintained that weight until peri-menopause descended on me in my late 50s. Though there are many symptoms ranging from night sweats to hot flashes, the underlying physiology of the process is significant hormonal disturbance.

I slowly started to regain weight, despite my continued rigorous adherence to my food plan and exercise. I developed unidentifiable and significant edema. A serious cyst condition grew that resulted in impaired mobility. Surgical intervention was recommended and five surgeries were performed from 2009 to 2011. Despite my best efforts to manage this process, I was left with surgically induced lymphedema, a life-long disorder of the

lymphatic system that very few doctors know about or treat. After much research, I found and received specialized treatment. While there was some reduction in the swelling, significant problems continued. I was in excruciating pain, not common to lymphedema. I was told that I would end up in a wheelchair.

I hunted with fervor for answers. My lymphedema therapist gave me a textbook to read, Földi’s Textbook of Lymphology for Physicians and Lymphedema Therapists, and there, in Chapter 9 was the answer I had been looking for during my entire lifetime: LIPEDEMA. The authors cite that 11 percent of women have this fat disorder, which would mean 17 million women in the U.S. and as many as 350 million worldwide.

I identified resources across Europe and began to travel with video camera in hand, gathering insights. I interviewed patients, doctors, surgeons, researchers, and scientists, and produced a documentary in order to raise awareness, “Lipedema: The Disease They Call FAT.”

I now see so many gifts in disguise, and I dedicate what I’ve learned to help other women to help themselves. My life would have been very different had I known as a young girl what I know now. Diagnosed and treated early enough, one can stop the progression of lipedema. At 67 years old, it’s not as easy. I’d rather not have lipedema. But then I think about the words of the wise farmer: “Maybe.”

Catherine Seo, PhD, is co-director, with Mark L. Smith, MD, FACS, Director of the Friedman Center for Lymphedema Research and Treatment and Chief of Plastic Surgery at Mount Sinai Beth Israel in New York City, of the Lipedema Project, a comprehensive transmedia program working to increase awareness and provide education, research and treatment for lipedema.

BY CATHERINE SEO, PHD

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You never know someone else’s worldWhen other people inconvenience me, I try to remember that I have no idea what is happening in their lives. Navigating daily life when my first husband, Ahmad, had stage IV bladder cancer reminded me how impatient most of us are about life’s insignificant, minor hurdles.

Ahmad went from jogging daily in April 2013 to needing a walker by July. We were told he could not be cured. We were told he had from eight months to two or three years to live. (He lived 11 months.) We were told the back pain he felt upon diagnosis would not go away.

Our vibrant city of San Francisco became an obstacle course. His optimistic world view drove him to want to be out of the house and enjoying the city every day he could. I am grateful for that. But activities that normally wouldn’t merit a second thought morphed into complex logistical undertakings. For instance, stepping onto or off a

curb required my stabilizing the walker and his very gently moving to minimize the pain of the giant tumor pressing on his spine. Drivers angrily honked at our often double-parked car. We tried to ignore the chaos and focus on taking a step.

Once, I parked in a bus stop because I had no other options. This can be penalized with a costly ticket. I didn’t know what else to do. Ahmad was leaving a restaurant and this was as close as I could safely get. Although we had a disabled parking placard, the on-street spaces were simply too far away. He was too proud to use a wheelchair since he could still walk.

The bus pulled up behind me just as I was getting out of the car. The bus driver immediately started yelling. I tried to ignore his anger and gave a friendly wave and flashed the disabled placard. I was hoping he would realize I was trying to help someone. But Ahmad was still in the restaurant. What the bus driver saw was a healthy woman in yoga clothes, illegally parked, with a disabled parking placard. He was livid and didn’t hold back.

“You can’t park here,” he screamed, “I’ll have you towed!”

I approached the bus and tried to explain.

“I’m so sorry,” I said. “My husband has cancer and he can’t walk very far. He is coming out of the restaurant in just a moment and we will leave. He is just very slow.”

“I’ll call the police,” he screamed. “I’ve got your plate. I’ll have you towed!”

I felt the tears welling up. He oozed hostility. San Francisco had recently started allowing “tech buses” that transport city residents to Silicon Valley companies to use public bus stops. But for us to use the same stops in the trenches of terminal cancer was perceived as a near crime.

I wanted to stay calm and reason with him. But I was simply too worn out. Worn out from all of it: the terminal prognosis, the chemo, the transfusions, the pain management regimens,

I wanted to stay calm and reason with him. But I was simply too worn out.”

BY RENATA KHOSHROO LOUWERS

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the pity, the sleepless nights, the ER, the wanting to rewind to the carefree life we’d lived just a few short months prior. And I was worn down from people who misconstrued our behavior as rudeness or arrogance.

“You go ahead,” I said. “You call the police. We’ll see if they want to tow the car of a disabled man dying of cancer.”

At that moment, Ahmad emerged. He looked like a cancer patient: thin and balding and slow moving. The bus driver said nothing. No more threats but also no acknowledgement. No apology. No emotion of any kind registered on his face.

He simply closed the door and drove away.

I think about this incident every time I feel that someone else is impairing the efficiency of my day. I gently remind myself I have no idea what is happening in their world on this day, at this moment.

Renata Khoshroo Louwers is a writer and a bladder cancer patient advocate with the Bladder Cancer Advocacy Network and the Research Advocacy Network. She lives with her husband, Tim Louwers, in Virginia’s Shenandoah Valley and San Francisco.

I think about this incident every time I feel that someone else is impairing the efficiency of my day.”

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Fighting the pain; finding the lightI was happily working as a musician in Georgia when my life suddenly and completely changed.The back cramping that I typically experienced every autumn flared up, but instead of lasting a couple of weeks it wouldn’t go away and instead spread all over my body. I found myself with no energy and constant chills; I was seemingly trapped in a fog, and when I would get up to try to eat, go to the bathroom or just sit with my family I would soon be back to bed.

I looked around for a doctor but got accused of being a “drug seeker” when I complained about the excruciating pain. With every accusation the more frustrated I got, but then amazingly I found a physician who really listened to me. It was in his pain management clinic that I was first diagnosed with fibromyalgia/myositis.

From there I was referred to a rheumatologist, and after she repeated the same blood test four times she diagnosed lupus, scleroderma and dry mouth. The reason for so any tests? I was told only 3 percent of men get scleroderma. I was also told that my diagnosis was grim: I was given two to three years to live because of my high pulmonary blood pressure and the risk of stroke, heart attack and renal failure.

Back at home, Epsom salt baths seemed to be the only thing that helped abate the migrating cramping and excruciating pain. The longer I soaked the more it helped, so to fight the boredom I put a powerful stereo in my bathroom. And as a musician I naturally wanted to sing along.

I was lucky that my voice and breathing technique weren’t affected like the rest of my body. Trained in

formal operatic technique since the age of 6, I tested my ability to sing and found I still could.During these soaking and singing sessions I started noticing familiar feelings. Waves of pain-easing tingling sensations spread throughout my body, and I felt the same way I did when performing on a big stage with the endorphins rushing in. Those of us in the music business always referred to it as the “performance high,” but I called it finding the light.

Around this time I felt not only physically better but I actually started feeling hopeful. I started doing research on my disease and working with my physicians on how best to manage it. It took eight years, but my doctor and I finally found the right combination of medication – including an effective blood pressure one – and supplements. The two-to-three-year prognosis no longer applied.

My motto has always been “adapt and adjust.” It got so dark for a time that I couldn’t do this, but it was ultimately music that helped pull me through. As one of my favorite new recording artists, Tyler Joseph from the band Twenty One Pilots, has said:

The meaning of purpose for me is by creating something, if it be by writing lyrics, painting a picture, by expressing yourself through art if it’s photography or music or theater, or whatever it is. It doesn’t have to be artistic, but if you create something and only you know the meaning of it, that’s the beginning of purpose for you.

For those out there who are suffering: Start expressing yourself, and by creating art in whatever form you can, you may find strength and purpose. You may find the light that helps you adapt and adjust to whatever disease you’re dealing with.

Robert Combs has experience as recording artist, lyricist, composer, arranger and producer. He started performing/touring at the age of eight.

BY ROBERT COMBS

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Marked: My scars remind me of my purposeImagine being in a crowd and wishing you were invisible, but you’re marked, and there is nowhere you can hide. I know that feeling.

It’s said that 4 in 10,000 people worldwide have sarcoidosis, an inflammatory disease that can cause lumps known as granulomas to develop throughout the body. However, I’ve never seen one who is disfigured like me, though I know they exist.

When it appeared, I would cover the first lump on the left side of my face with makeup. I went to a plastic surgeon and had a biopsy. When I returned to the doctor’s office, I was informed of the findings. I recall hearing the word sarcoidosis for the first time; I didn’t have a clue as to what it was. When I went back home, I immediately started praying asking God to heal me. Little did I know that years would go by with no visible sign of healing.

Several years passed before another lesion began to appear on my right cheek.

At this point, I was extremely stressed out and wondering what in the world was going on as no one in my family had this issue. One year later, another lesion appeared on the right side of my eye. I became very frustrated with the mundane responsibilities of life, like going grocery shopping. Fellow shoppers would look at me as if I was contagious, and quickly look away as if I was the ugliest thing that they had ever seen. There were many times when people would stop and stare at me as if I was a fish in a fishbowl. To make matters even worse, children would stare at me while walking toward me with frowns on their faces.

Imagine, if you can, standing out no matter how hard you try to fit in.

One afternoon while walking to one of my favorite natural health stores, I saw three teenagers — a boy and two girls —walking down the street. When I first saw them, I thought to myself, I should move over to the other side. After being rejected so many times, I just wasn’t up to any more rejection, at least not in that moment. But for some reason, I didn’t cross the street. As they came closer to me, the boy, who was probably only 13, yelled a profanity. The two girls kept walking. But the boy turned around, and, while walking backwards, pointed at both of his cheeks and shouted disgusting profanities.

I felt like I had been punched right in the middle of my stomach, and my heart sank as the tears formed in my eyes.

I wondered why this was happening to me. I would later learn that environmental factors can make it more likely to develop sarcoidosis — I lived in an apartment with mold for 15 years. But in the meantime, I resorted to trying to hide my face because the lesions were so big — larger than the size of a quarter. I tried to cover them with circle Band-Aids. Unfortunately, the Band-Aids kept falling off because the lesions were too large. My former pastor kept telling me that I should stop covering the lesions, but I couldn’t bring myself to remove them. As time went on, I stopped covering them even though they were more obvious than in the beginning. I eventually came to terms with truly loving myself when I heard an inspirational sermon that challenged me to fulfill my purpose on earth, regardless of being physically disfigured.

Even though I still have physical scars, my scars remind me of my purpose; this is my story.

Shanene Higgins lives in Oakland, California. She is the CEO of Higgins Publishing.

BY SHANENE HIGGINS

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Surviving cancer, one milestone at a timeApril 15, 2008 is a date that I’ll never forget. I had been experiencing fatigue and nausea for a few months, so I scheduled to have some blood work done and then a scan. My fatigue had become so bad that I was resting in a wheelchair in my physician husband’s office at the hospital where the tests were being done. While I was waiting for the scan results, my parents walked into my husband’s office — so I knew that the news couldn’t be good.

In a split second, my life changed dramatically when I was diagnosed with stage IV stomach cancer. I was told that my cancer was inoperable and incurable and that I would need chemotherapy for the rest of my life.

At the time of my diagnosis, there were very few treatment options available because it isn’t a common cancer in the United States. Therefore, my

chance of being alive in five years was only 4 percent. I was 40 years old, an attorney with my

own firm and the mother of three young children. This was something I didn’t have time for; this was definitely NOT in my life plan.

When I was told I only had a few weeks to live, my first thoughts were that my 3-year-old daughter wouldn’t remember me and that my 10-year-old twins would go through their teenage years without a mother. I couldn’t imagine missing out on my children’s lives. I was determined to live so I could celebrate milestones that every mom waits for like teaching them how to drive, celebrating college acceptances, taking prom pictures and especially watching with pride as they walked across the stage to receive their high-school diplomas. The possibility of not seeing them grow up wasn’t an option for me; I knew I had to take matters into my own hands.

Although I didn’t plan for this, I knew I couldn’t let stomach cancer win. Within a few minutes of my diagnosis, I journeyed quickly through the five stages of grief so I could take on the fight. I was determined to beat this disease and to not become another statistic. My husband, children, and family were with me every step of the way, and I felt that together we could fight this. I could look stomach cancer in the eye and quote Dylan Thomas: “I will not go gently into that good night.”

Fortunately, I’ve received the best care as overseen by my medical team, my husband and father who are both physicians, and my very devoted mother. I’m also one of the lucky few who have responded to the many different regimens that I’ve received since my diagnosis, including HER2+ targeted treatments. These new treatments, along with the support of my family, have helped me to survive. I am considered to be a “Super Survivor,” which I’m extremely happy about!

In April 2016, I reached my eighth cancerversary and one month later I watched my 18-year-old

BY DEBBIE ZELMAN

I felt that together we could fight this. I could look stomach cancer in the eye and quote Dylan Thomas: ‘I will not go gently into that good night.’”

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twins walk across the stage to receive their high-school diplomas. As I hugged them after the ceremony, I was struck by the power and meaning behind being able to be present for this milestone in their lives. Then in June, I saw my 11-year-old daughter graduate from elementary school. Eight years ago, I was terrified to imagine not being here. After a cancer diagnosis, you live day to day, week to week, and scan to scan not knowing what the future may bring, but I make it my mission to live each day to the fullest and to fight for a tomorrow.

My children and my husband are my main priority, and every birthday, talent show, soccer game, karate tournament and recital I can attend is a blessing. Every day that I defy the odds means that

I get to celebrate another milestone with my family. While people may look at me and see a Super Survivor, they don’t know the struggles my family and I go through every day. My determination to fight has been driven by my children who have always been, and continue to be, my inspiration and my proudest accomplishments.

Debbie Zelman is founder and president of Debbie’s Dream Foundation: Curing Stomach Cancer, a non-profit organization dedicated to raising awareness about stomach cancer, advancing funding for research, and providing education and support internationally to patients, families, and caregivers.

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Yes, chronic pain and joy can coexistIn May 1998, in a moment of inattention, I torqued my knee during a modern dance class. A small mistake but one that turned out to be life-changing. The surgery I had that fall for a partial ACL tear ended up costing me dearly: I came out with RSD, now called CRPS, and now live a life of managing chronic pain.

Since that time I’ve had three more knee surgeries and one surgery on my spine. I recognize this is probably as good as it’s going to get.

When it comes to my disease, the key word here is “manage.” I live a small and careful life. I rest often. I go to acupuncture. I’ve been to countless doctors and practitioners, both mainstream and alternative. I have a realistic idea of my limitations, which are many. I don’t like it but I accept it.

I take narcotics every 3-4 hours. Without pain management, my pain would be through the roof. With pain management, I really am okay. Usually. It’s not the life I had imagined for myself but I have,

through a lot of hard internal work, come to a place of acceptance.

While having to balance out my need for solitude and rest, I’m actually quite physically active. I take a brisk hour-long walk most days, usually with a friend, so it’s a delight. And while I’ve had to accept that I can’t take another modern dance or ballet class, not even something like pilates, which I miss, I can do contra dancing and English country dancing. These are old social dance forms that are super fun, energetic, social, and utterly filled with joy. I get my endorphin kick and then I can dance for three hours, usually three nights a week.

I’m unable to be employed, but I do a lot of volunteer work, always around fostering community. I do things that matter to me and are of service to my communities. I like to think that I am a good friend to many; I’m known for making the most excellent chocolate chip cookies.

I need joy. I need my friends. I need this feeling of being alive and healthy, even if I’m going to pay for it with increased pain the next day.

Constant pain is exhausting. Fatigue is a major player in my life and terribly limiting. I don’t even have the stamina to go on a vacation. But I am okay. There’s much in my life that is joyful, and that is what I’ve chosen to focus on. I am proof that managing chronic pain and experiencing great joy can coexist.

Katie Olmstead lives and dances in western Massachusetts with her two wild black kittens. Since her grown daughters no longer need her attention, she cares for friends in her dance and Unitarian communities, volunteering in organizational capacities and feeding people. For fun. For joy.

BY KATIE OLMSTEAD

Constant pain is exhausting… But I am okay. There’s much in my life that is joyful.”

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The beast in my belly: Living with a chronic liver diseaseOn the morning of December 23, 2010, after having my gall bladder removed, I was shown a picture of my liver and told I had a stage 4 liver cirrhosis. It was a powerful and frightening moment – one that is seared into my memory. And one that began more than a half-decade of tests, misdiagnoses, and, eventually, lifestyle changes.

I was astonished that morning to learn that my case was pretty typical. Cirrhosis, the final stage of liver disease leading to liver failure, is commonly reached without any warning symptoms. I remember very clearly my doctor’s words: “I’m sorry, but we have nothing to offer. There is no treatment.” My vision of my liver was that of a deadly beast that would kill me. Being told that losing weight and exercising could help didn’t inspire.

Later, the pathology report came in and showed that I did not have cirrhosis, not even fibrosis. Shocker. But in hindsight that report was an error: In 2014 after a series of blood tests I was diagnosed as having cirrhosis as a result of hemochromatosis. That was certainly a blow but at least this kind of cirrhosis, I was told, was potentially manageable with phlebotomies. And over time I had seven liters of blood drawn.

I’m an engineer, so learning about the beast was natural for me. I made it my goal to understand the details. I sought second opinions. I read the

research. I got my biopsy slides and got a pathologist to sit at the microscope with me and explain the nuances. Eventually, assuming possible liver failure, I got a referral to a transplant center and went through yet another analysis. I was told I actually don’t have hemochromatosis but I’m a cirrhotic NASH (non-alcoholic steatohepatitis) patient.

By then I understood the diagnostic challenges so I was more prepared than most people for what I heard. And because of my research I had internalized the message of the importance of lifestyle change and weight loss — and I was determined to do everything I could to defeat the liver beast.

The result: I’ve lost 45 pounds with a healthier food strategy without feeling hungry or deprived. Learning about vegetables I’d never tried has been an adventure. Not eating juicy steaks, sugary deserts or other foods I had once loved is doable with a clear goal in mind.

The payoff came during my recent biopsy: All of the relevant tests looked good, and my disease doesn’t appear to be progressing. My wife and I celebrated with a salad.

The tests and various diagnoses haven’t been easy, nor has changing my lifestyle. But I’ve managed to avoid backsliding because I had my research and knew that change could help. For now I’ve shackled the liver beast in my belly, though I can’t help but wonder if yet another twist lies ahead.

Wayne Eskridge, is President and CEO of the Fatty Liver Foundation. Eskridge founded the organization because an estimated 100 million Americans already have fatty liver disease and are unaware of it. He is a graduate electrical engineer from the University of Idaho.

BY WAYNE ESKRIDGE

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“But you look so good”Living with an invisible illness

I remember what it’s like to feel healthy and live carefree. I took my health for granted for the first 24 years of my life.

My nightmare began after I suddenly woke up one day thinking I had the flu, but it never went away. It was like my body suddenly stopped responding to gravity, and bizarre and debilitating symptoms kept appearing. I had never experienced anything like it. Two years later, after being poked and prodded and getting the crash course in medicine I never wanted, I was diagnosed with mitochondrial disease.

Now, it’s not always good and bad days — but more like good, bad and tolerable moments throughout the day.

This awful disease affects every part of my body. I live with an energy disorder and everyday tasks tire me out. I wake up, brush my teeth, shower, and get dressed and am already exhausted. My lab specimens, which are routinely sent all over the country travel a lot more than me. (My other travel experiences are vicariously through the Travel Channel).

I’ve been at this rare disease thing for a while now. It’s hard to have a serious condition much of the world has yet to learn about, especially when at first glance I don’t look sick. When I say I have mito, I get, “What’s that?” instead of the sympathy you’d receive if people actually knew what it was. I’ve had more than a few medical professionals tell me they

Googled mitochondrial disease before my appointment. Reassuring, huh?

With an invisible illness, people can’t see the symptoms I’m experiencing or what isn’t working correctly inside my body. You can’t see my dizziness, nausea, pain, GI dysfunction, fatigue, or muscle aches. You can’t see my low blood pressure or irregular heart rate; you can’t see my heat intolerance or breathing issues among many other things. I often worry about what others think; if they can’t see the illness many assume it’s not there. I’m self-conscious about this even though I try not to be.

I was working and finishing grad school when I first became sick and even though I hadn’t taken a sick day in more than two years one doctor told me I was wasting everyone’s time and should see a shrink despite the many abnormal test results that would have been impossible to fake. How could I be so sick when I looked so good? I often feel like I have to keep proving I am really sick.

Very few see the “real” me. I try not to let illness define me, but it affects so much. I’m not going to lie: This illness holds me back more than I would like.

Overall living with illness has made me a better person: My experience has opened my eyes up to so much and I have become more patient, caring and empathetic. But I wish so much suffering wasn’t involved.

Lisa Parker has been living with mitochondrial disease and many associated conditions for over a decade. She has a masters degree in public administration and feels like she also has an honorary knowledge of medicine from living this journey.

BY LISA PARKER

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Experts by Experience 2017Editor: John Novack, Communications Director, InspireDesigner: Maria L. Frank

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