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Cancer, Patient Care

“As a young lung cancer patient, I had to find my own path”: Fighting stage IV with full force

We’ve partnered with Inspire, a company that builds and manages online support communities for patients and caregivers, to launch a patient-focused series here on Scope. Once a month, patients affected by serious and often rare diseases share their unique stories; this month’s bonus column comes from patient advocate Emily Bennett Taylor.

When I was diagnosed at age 28 with stage IV lung cancer (yes, you read that right: 28. Non-smoker, college athlete, lung cancer), I wanted to shout it from the rooftops. No, not in the joyous, “share-my-news” type of way. The concept was so unfathomable that I sometimes felt the only way it would really sink in is if I screamed it out loud in public. I didn’t, of course. While many social norms, like dressing to leave the house or even showering, went completely out the window as I underwent treatment, I’m happy to report that I managed to maintain at least a semblance of sanity in public. And I’ve thankfully found better venues – such as this article – to share my story.

I learned very quickly that as a young lung cancer patient, I had to find my own path. In a cancer normally associated with older smokers, I was constantly telling my doctors: “I’m different. I’m strong. I want to be as aggressive as possible.” Standard of care is to treat stage IV patients palliatively, but that didn’t sit well with me – I wanted a cure. I was told “no” to surgery countless times. I kept seeking second, third, multitudes of opinions in order to find a doctor who would see me as the young, strong person I was with my whole life ahead of me.

While I tested negative for all known genetic mutations (I know one is out there – please find it for me!), I was fortunate to be part of a small percentage of patients who respond to traditional chemotherapy. After six rounds of carboplatin, Alimta and Avastin, and two additional infusions of Avastin, I found my white knight in Raja Flores, MD, of Mount Sinai Hospital. My husband and I relocated from our home in California to New York City for three months, and on February 8, 2013, Dr. Flores removed my entire right lung, pleura, half my diaphragm, all mediastinal lymph nodes, and the pericardial sac (around my heart), which he rebuilt with Gore-Tex.

Three weeks into my recovery, I began a follow-up course of 28 rounds of high-dose radiation to my right lung cavity. If there were any cancer cells left, Dr. Flores and I intended to fry them into oblivion – even if side effects had me vomiting and nauseated for the better part of six weeks, and exhausted for another six months.

My reward? Dr. Flores declared me N.E.D. – No Evidence of Disease. I’ve lived with that diagnosis for almost a year and a half now, and it feels fantastic.

Is life with one lung difficult? Sometimes. But the most important thing to me is that it’s still life. Lots of surgeons told me “no” because they believed removing a lung would diminish my “quality of life.” For me, losing a lung meant gaining my life, and that’s a trade-off I think any patient would make if given the choice.

If you’re a medical student looking for an area where you can make a serious impact, consider lung cancer. In the past few decades, survival rates for other major cancers (breast, prostate, colon) have increased to well above 50 percent, some reaching the upper 90s. Lung cancer, the nation’s No. 1 cancer killer? A dismal 16.8 percent.

This is a field ripe for advancement. We need researchers developing better treatments and methods of early detection. We need doctors who both understand that the face of lung cancer is changing and are also willing to push the envelope with their patients to find an individualized, aggressive cure.

Every lung cancer is different, and every patient deserves a treatment plan with the goal of preserving life. You can be the difference. You can make an impact. And you can change the course of someone’s life, just like Dr. Flores did for me.

Emily Bennett Taylor, a former state track champion, college volleyball player, and finance manager, is now a Stage IV lung cancer survivor and spokesperson/patient advocate for the Bonnie J. Addario Lung Cancer Foundation. Her story has been highlighted on the Steve Harvey Show, the Atlantic Monthly, and on her blog - embenkickscancer.wordpress.com - named to Healthline’s Top Lung Cancer Blogs in 2013 and 2014.  She writes candidly about her treatment and life with one lung, as she works to raise awareness about the leading cancer killer.  Emily lives in Southern California with her husband Miles and their two lovable mutts, Ginny & Tonic.

Autoimmune Disease, Chronic Disease

Empowered is as empowered does: Making a choice about living with lupus

We’ve partnered with Inspire, a company that builds and manages online support communities for patients and caregivers, to launch a patient-focused series here on Scope. Once a month, patients affected by serious and often rare diseases share their unique stories; this month’s bonus column comes from Pattie Brynn Hultquist, C.H

“How do you do it?”

I get it. A mother of five, a wife, a childcare provider, president of the condo board. Chartered herbalist, scrapbook design team member, wool and fiber spinner, avid camper. Yoga enthusiast, a weight-training type-2 diabetic – the list continues.

How, exactly, does one manage living with an autoimmune disease like lupus: the disease of a thousand faces, the epitome of “You don’t look sick”?

When I first received my diagnosis of systemic lupus erythematosus I was devastated not only for myself but for my family, friends and extended personal communities. It wasn’t just me receiving a diagnosis on that brilliantly colored fall day in 2010; it was my entire social network.

Lupus can affect people very differently. Some people have skin issues. Some have joint pains. Some, like myself, also have had a heart attack, pericarditis and kidney issues that makes taking medications a game of pharmaceutical roulette: sometimes, medications makes me feel worse.

That isn’t living. That’s existing.

I joined forum after forum, community after community, group after group, all over the Internet. I had to know how to live with an autoimmune disease. What I found were either the “Whine-1-1” or the “Positive 24/7!” I left them all.

I felt a little like Neo when offered a choice between the red pill and the blue pill.

My choice?

Taking neither and forging my own way through this made-for-TV-movie kind of life living with a chronic disease.

I started a blog. I started sharing how I, a mother of five in the chaos of my reality, was living with lupus. I wrote about the good, the bad, the ugly, and the deliriously exhausted life I live. It struck a chord with many who know chronic illness for its complexity. There were so many people experiencing the very same thing!

I went from blogger to globally recognized health advocate. And one day I told my primary care physician about my writing. I told her about how many people are suffering in silence because they feel “invisible” not just with their health-care teams, but with friends and even family. I even told her about how I felt that way, myself. She told me, in all honesty, that she had never really considered the magnitude of social effects that someone’s diagnosis can engender.

I was stunned. Sure, she had mentioned my husband and children at our appointments, yet she conceded that she had simply not considered event invitations no longer extended (I simply can’t commit to one way or another because lupus can flare up at any given time with pain, exhaustion or sickness), or, of having often to redefine my abilities and seek out new friendships in order to keep proactively engaged in life.

That was the day I illustrated the research, networking and usage benefits of social media as my outlet, and she became empowered to begin treating the socio-emotional impact of health care: how interpersonal communities and social media can be a powerful tool in the health-care toolbox for individual patients.

The result? I was validated by the health-care professional who is most intimately aware of the clinical and physical demands of this disease on my body and how it affects my entire social network. Validation heightens my confidence to be a proactive patient. Proactive behavior advances whole-body health care and awareness.

Choice is a beautiful thing.

Pattie Brynn Hultquist, C.H., is a globally recognized lupus and chronic illness health advocate at her weblog, Lupus Interrupted. A team captain for the Walk for Lupus, held annually, she participates in fundraising efforts at Gold Award levels for Lupus Ontario. She can be found on multiple social media platforms sharing information, resources and the realities of living with chronic conditions, her supportive family always within reach.

Chronic Disease

Living with Ehlers-Danlos Syndrome: “Sometimes I just don’t have it in me to be inspirational”

We’ve partnered with Inspire, a company that builds and manages online support communities for patients and caregivers, to launch a patient-focused series here on Scope. Once a month, patients affected by serious and often rare diseases share their unique stories; this month’s bonus column comes from previous contributor Michael Bihovsky.

I have a connective tissue disorder named Ehlers-Danlos Syndrome. It’s a genetic collagen defect that results in super lax ligaments and tendons, creating frequent joint dislocations, cartilage tears, chronic muscle spasms, and much more. May is Ehlers-Danlos Awareness Month.

Every EDS patient knows that one of the hardest parts of our day is the moment we open our eyes and waken into the reality of our bodies

Usually I take this opportunity to say something inspiring, about how my illness has changed me for the better and given me a clear purpose in life for both the work I do and the person I want to be. While all these things are true, the fact is that sometimes I’m in a physical state where I just don’t have it in me to be inspirational. And that’s all right – inspirational words are meaningless without the context of genuine human struggle. So, if you’re interested – and if you’ll bear with me – I’d like to take this opportunity to talk about EDS in its rawest sense, and to do my part to tell you about the very serious disease it is.

When I was a child, I got sick… and I never got better. And I never will. When I was finally diagnosed with EDS, it was made clear to me that there was no cure for my condition. The best we could do was try to manage and slow the symptoms – symptoms that were pretty much guaranteed, in the long run, to get worse. I have done the best I can with this knowledge. I’ve tried to make the most of the life I’ve been given, and whenever possible to keep a smile on my face and hope in my heart. But it’s been very hard. Every EDS patient knows that one of the hardest parts of our day is the moment we open our eyes and waken into the reality of our bodies, stirred from dreams of ourselves as we used to be, and the futures we imagined we’d have.

EDS is considered a rare disease, but every year the suspected percentage of those afflicted rises dramatically. The disease is notoriously underdiagnosed because doctors themselves don’t usually know about it, and are only able to start diagnosing patients when a textbook case (such as myself) walks into their office and physically demonstrates what it is. The devastating irony is that EDS is actually one of the simplest diseases to diagnose – all you really need is a protractor, and an online guide to a system of criteria known as the Beighton Scale. Then take this to your doctor for confirmation. When I performed these tests on myself a few years ago and then went to my doctors asking “What do you know about Ehlers-Danlos Syndrome?”, the deer-in-the-headlights look was as unanimous as it was unnerving.

So for anyone out there suffering from chronic pain, or other strange symptoms, please look into this. Or if you have a friend in physical distress, please pass on this information. EDS is a scary and challenging diagnosis, but the consequences of not knowing are far greater than that of a correct diagnosis. EDS symptoms can range from the very mild to the extremely severe. One thing is certain, though: If I had received a diagnosis back when my symptoms were mild, I would be living a very different life now. Every single day, in my struggle to actualize the person I still can be, I cannot help but mourn the person I could have been.

To the many people out there reading this who have EDS, or any other chronic illness, “invisible” or not – thank you for being my brothers and sisters. Take care of yourselves, and take care of each other. And remember that healing others may very well be the clearest path to healing ourselves.

Michael Bihovsky is a musical theater composer and performer, and an “invisible illness” advocate. He is best known for his viral YouTube video “One Grain More,” a musical parody of Les Miserables about the plight of the food allergy community. Michael has also written an original musical, “Fresh!,” which tells the semi-autobiographical story of a group of college freshmen overcoming physical and emotional adversity amidst the craziness of college, and he is currently writing a book titled “Live Because: The Philosophy of the Broken, and the Journey Toward Wholeness.” For more information, visit www.livebecause.com.

Previously: “Live Because:” Living a fuller life with chronic illness

Cancer

Breast cancer awareness: Beneath the pink packaging

We’ve partnered with Inspire, a company that builds and manages online support communities for patients and caregivers, to launch a patient-focused series here on Scope. Once a month, patients affected by serious and often chronic diseases share their unique stories. Our latest comes from a breast cancer patient from Salt Lake City.

Over the years, you may have participated in pink-themed races and donned pink shoe laces in an effort to demonstrate solidarity and support regarding breast cancer awareness.

Good intentions notwithstanding, let’s pause for a moment to consider what has truly been accomplished since National Breast Cancer Awareness Month was launched in 1985. Have fewer people gotten the disease? Have survival rates improved? The answers are disconcerting:

  • Mortality rates remain depressingly flat. In 1988 approximately 40,000 women perished annually from breast cancer; in 2013 39,620 women and 410 men will have died from the disease.
  • Today, approximately 162,000 women and men are living with metastatic breast cancer in the U.S. Some of them developed metastatic disease five, 10, 15, or even 20 or more years after their initial diagnosis. Many are relatively young – in their 20s and 30 – with growing families.
  • A diagnosis of early stage breast cancer provides no reassurance because the disease will eventually spread or “metastasize” to other organs in an astounding 30 percent of these patients.
  • Median survival after a metastatic diagnosis is only three years – with no statistically significant improvement over the past 20 years.

Imagine for a moment that you’ve been diagnosed with early stage breast cancer. You have confidence that if you follow your doctor’s recommendations, you’ll live a normal life – after all, you have been made “aware” of breast cancer! But that doesn’t always happen. Take my case: I was diagnosed with early stage breast cancer at age 39 after 4 years of misdiagnosis. I experienced a double mastectomy, six cycles of the most toxic chemotherapy available at the time, followed by five years of Tamoxifen, a hormonal therapy. I became increasingly convinced that my experience with breast cancer was safely behind me each time I underwent annual cancer checkups with normal results.

Fourteen years after my initial diagnosis, I developed a dry, persistent cough that three doctors misdiagnosed as asthma, GERD, or post-nasal drip. After four years of chronic coughing I became hoarse. Finally a doctor recognized that my vocal cord was paralyzed. He ordered a scan that revealed a tumor pressing on the laryngeal nerve, which in turn caused paralysis.

A biopsy revealed metastatic breast cancer that was hormonally receptive. By then I had developed multiple lung tumors, a liter of malignant pleural effusion and pericardial effusion. A catheter was inserted in my chest to drain the fluid until it disappeared several weeks later. Weak, ill, and terrified, I didn’t know whether I would live for another year and was determined to be as active as possible to enhance my odds of survival.

Although my oncologist recommended chemotherapy, I sought a second opinion from an oncologist who suggested hormonal treatment that has thankfully allowed me to enjoy a better quality of life. I also consult with a naturopathic oncologist regarding supplements and complementary therapies, and I’ve adjusted my diet to exclude sugar and processed foods.

My medical team is rounded out by a wonderful acupuncturist whose skills have enabled me to avoid anti-depressants. For emotional support, I exchange encouragement and information with people online who are coping with metastatic disease, and my husband has retired early so that we can enjoy time together while I am still well enough to do so.

After eight years of misdiagnosis, I’m left with little faith in the diagnostic capabilities of the medical establishment and have no illusions about living a normal life. Yet I’m one of the lucky ones: relatively old (age 60), not on chemotherapy, able to participate in daily activities, and currently pain-free. Conversely, most patients I know suffer terrible side effects from both their cancer and its treatment, such as fatigue, nausea, blistering skin, neuropathy, and excruciating bone pain.

In retrospect, I wouldn’t change any decisions regarding my disease and its treatment. But I have to realize that “early stage” breast cancer, with which I was initially diagnosed, is significantly more lethal than the media conveys – given that nearly one of three early-stage patients will eventually succumb to their disease.

It’s obvious that the battle against breast cancer, with incessant emphasis on “awareness” and early detection, has been watermarked upon the canvas of failure. Increasing awareness – especially when it’s been heavily sugarcoated – will never alter the course of this disease or reduce the victim count. Only by deriving a mechanism to irrefutably prevent breast cancer and effectively treat those who already have it will we forever close the book on stories such as mine.

Anne Loeser is a retired software project manager who was diagnosed with metastatic breast cancer 18 years after developing “early stage” disease. A passionate researcher, she continuously shares information and support on multiple forums with others who are dealing with terminal breast cancer.  Anne currently resides in Salt Lake City, Utah with her husband and parrot.

Related: Pink Think/The hitch with the breast cancer marketing pitch

Autoimmune Disease, Chronic Disease, Patient Care, Pediatrics

A wake-up call from a young e-patient: “I need to be heard”

We’ve partnered with Inspire, a company that builds and manages online support communities for patients and caregivers, to launch a patient-focused series here on Scope. Once a month, patients affected by serious and often chronic diseases share their unique stories. Our latest comes from 15-year-old Morgan Gleason, who lives with the autoimmune disease juvenile dermatomyositis. 

Before June 18, 2010, the day I was diagnosed, I knew the medical system the way that most kids do. I went to the doctor for immunizations, physicals, sore throats and bones that might be broken. Then, I developed a rash on my joints. I started sleeping more than normal, was very weak in my muscles, and experienced frequent stomachaches and headaches.

At the age of 11, after a year of these symptoms, I was diagnosed with a rare autoimmune disease called juvenile dermatomyositis. I suddenly was in a whole new medical system. I had to learn to swallow pills, wait for hours in doctors offices, spend nights in the hospital, worry about what was happening, deal with some not-so-nice doctors and nurses, and endure a lot of pain. I also watched my parents get frustrated with figuring out medical bills and trying to understand all of the claim statements and appeal denials.

Now I take 21 pills a day, get two infusions a month by an IV, and give myself an injection once a week. I have more specialists than my grandparents, and I spend a lot of time as a patient.

This January, I was hospitalized for the second time in four months for meningitis due to a reaction from a treatment I received. After four days of little sleep and an excruciating headache, I made a video about my hospital experience and posted it online. To my surprise, the video got a lot of attention. Forbes, Time, the Huffington Post and other outlets wrote about it. I believe that the video was popular because my experience was a common one and struck a nerve with others.

I am appreciative of the care I have been given. I love the hospital where I get my treatment, and I think it’s a great hospital. The medical students, residents, attending physicians, and specialists are great doctors. The nurses are also really great. This is not an issue with the individual people or hospitals. The issue is much bigger, and it’s the way the system as a whole is designed.

My video had a few main points. I was frustrated that I couldn’t get any rest in the hospital. The system is designed around the schedules of the doctors and the desire to discharge patients by noon instead of around the circumstances and needs of the patient. Second, the doctors come in individually instead of coming together and addressing all the concerns at one time. Third, when patients are awoken from deep sleep, they’re not going to be as engaged as they would be when they are alert and comfortable. Finally, patients, and even children and teenagers, appreciate having the doctor talk with them instead of having the doctors talk over them or away from them in the hallway.

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Cancer, Patient Care

Let symptoms – not age – influence treatment

We’ve partnered with Inspire, a company that builds and manages online support communities for patients and caregivers, to launch a patient-focused series here on Scope. Once a month, patients affected by serious and often rare diseases share their unique stories; the latest comes from cancer survivor Danielle Ripley-Burgess.

I consider myself one of the lucky ones.

A diagnosis of stage III colon cancer at age 17 probably sounds like a pretty tough blow and not lucky at all. Not to mention a second diagnosis of stage I colon cancer at age 25 and subsequent surgeries and hospital stays to combat my genetic disease, Lynch Syndrome.

Yet despite the extensive medical record over the past decade, I still consider myself extremely lucky when compared to other survivors.

You see, I’m not alone in my fight. Although colon and rectal cancer most often appear in those over age 50, it can happen in young people. In fact, it is happening – and those of us diagnosed under age 50 make up the fastest growing demographic to be diagnosed.

Screening recommendations for colon cancer don’t typically apply for those of us still washing our faces with acne cream, going prom-dress shopping or planning our weddings. But when we walk into a doctor’s office with symptoms like severe abdominal pain, cramping, bloating and rectal bleeding, we need to be taken seriously.

A fellow survivor named Meaghan, stage I colon cancer at age 26, initially assumed her bleeding and pain came from past pregnancies. The emergency room staff concurred and offered her pain pills and suggested a high-fiber diet. Not until she returned to urgent care in extreme pain did a CT scan discover her tumor. Another friend, Melissa, knew that “college stress” couldn’t be the only cause of her pain and blood in the stool. Melissa fought tooth-and-nail for a referral, yet doctors wouldn’t send her to a specialist. Luckily, her mom called a gastroenterologist who had a last-minute cancellation. That appointment discovered her stage III rectal cancer at age 20 and saved her life.

I consider myself lucky because unlike many survivors also diagnosed “too young,” I never got the runaround from physicians. I was never told I had irritable bowel syndrome, prescribed antidepressants, instructed to simply change my diet or denied medical exams.

My gastroenterologist took aggressive steps and sent my 17-year-old behind straight into a colonoscopy the day he learned of my bleeding. I spent only minutes in his office but as soon as the stool test detected blood, he didn’t cut corners. My dad’s insistence on him treating me as if I were his teenage daughter led to the discovery of my tumor just days after the appointment. I was treated based on my symptoms – and not my age.

The hands-on approach from every member of my medical team not only saved my life from colon cancer twice, but it set me up for survivorship. Now, I have a long life ahead of me.

No, colon cancer doesn’t often occur in teenagers. But it can. And thankfully, my symptoms influenced my doctors’ recommendations and treatment – not my age.

Danielle Ripley-Burgess, a two-time colon cancer survivor, is director of communication for advocacy organization Fight Colorectal Cancer. She was Miss October in the 2009 Colondar, an educational calendar of young colon cancer survivors that raises awareness of colorectal cancer. She writes about the topic of cancer as a blogger for Huffington Post and on her blog, Semicolon Stories. Last Friday, she was among a group of colon cancer survivors that NBC’s TODAY show interviewed for a segment about Colorectal Cancer Awareness Month.

Cancer

A rare cancer survivor’s journey to thriving and advocating

We’ve partnered with Inspire, a company that builds and manages online support communities for patients and caregivers, to launch a patient-focused series here on Scope. Once a month, patients affected by serious and often chronic diseases share their unique stories. In honor of the upcoming Rare Disease Day (Feb. 28), our latest comes from Tammy Andries of Madison, Wisconsin, a survivor of rare cancer.

When I was first diagnosed with a neuroendocrine pancreatic tumor I didn’t dwell on the fact that I had cancer. With three kids at home, I knew we needed to do all we could to beat the disease. I was 39 years old when I was diagnosed, I had always been healthy, and I knew that God was giving me signs that things were going to be OK. What I didn’t know was that He was giving me an opportunity to meet so many wonderful and caring people over the next eight years of my journey.

Like many others who are diagnosed, I had no signs or symptoms. My cancer was found completely by chance. I went into the emergency room, in a city we didn’t live in, with excruciating pain, and was told I had kidney stones. I was given pain medicine and told that the stones would pass. They never did. Instead, I ended up in another ER (in the city we had just moved to) with doctors doing a CT scan of my abdomen. They found an 8-cm mass on the head of the pancreas and told me to contact my primary care physician to schedule some more tests.

Shortly thereafter I heard those dreaded words, and through all of the tests, procedures and second opinions, I kept seeing signs that things were going to be all right. And so many gifted people were now in my life to help me through the diagnosis, surgery and recovery. The surgeon I had, confident and strong, yet so caring and compassionate. The young intern who sat with me at night and quizzed me on things so that he could present my case during rounds. Having a rare form of pancreatic cancer makes you something of a celebrity.

A few months after my Whipple procedure, I went to a symposium of the Pancreatic Cancer Action Network. It was at that forum that I knew what my next purpose was. I had lived through the frequent trips to the bathroom after meals, the not knowing if the twinges and aches I was now feeling were normal parts of the recovery or not, and the feelings of extreme fullness after having only eaten three bites of a meal, but I couldn’t live with the fact that no one knew much about this insidious disease and that research dedicated to pancreatic cancer lagged so far behind other major cancers. I got involved, and now I’m an advocate for others.

As time passes and the medical appointments get farther apart, I worry a little less. Knowing more about this disease has helped me become more confident in myself, my faith, and my ability to help others faced with the same word I once faced: “You have cancer.”

Tammy Andries is a volunteer and advocate for the Pancreatic Cancer Action Network.

Autoimmune Disease, Chronic Disease, Dermatology

My two-decade battle with psoriasis

My two-decade battle with psoriasis

We’ve partnered with Inspire, a company that builds and manages online support communities for patients and caregivers, to launch a patient-focused series here on Scope. Once a month, patients affected by serious and often rare diseases share their unique stories; the latest comes from Alisha Bridges.

Psoriasis has affected every aspect and transition of life that I’ve encountered thus far. I’ve had the itchy, flaky, non-contagious autoimmune disease since I was 7 years old; I’m now 26. As I approach the 20-year anniversary of encountering the disease, I think of how my treatment has evolved, and as I reflect on the differences in treatment between then and now, it’s a Catch-22 in some ways.

It all started after a bad case of chicken pox. My scars weren’t healing correctly. They looked crusty and inflamed. After more than 90 percent of my body remained covered with this mysterious rash, my grandmother decided it was time for me to see the doctor, who diagnosed me with psoriasis. The positive side was that I had Medicaid as insurance, and it covered any and everything I needed. But unfortunately, due to my age, there weren’t many treatment options. From the age of seven to 19, I was prescribed an array of topical treatments and UVA light treatment, none of which were really effective in ridding me of psoriasis. The treatments just kept it at bay.

Once I went to college, treatment became more challenging. First, I went out of state for college, so the only time I could get treatment was when I came home for winter vacation. This particular treatment required me to stay in the hospital for three weeks, which was basically my entire winter break. Once I realized a treatment twice a year wasn’t going to be effective, my family attempted to find me a doctor near my school. The only caveat then was that Medicaid is state-to-state; therefore I was removed from hometown Michigan Medicaid and required to apply for Alabama Medicaid where I attended school. I wasn’t approved for Alabama Medicaid, though, which caused me to go essentially without insurance, aside from the simple coverage the school offered for emergencies.

After a few years of being in school without any insurance, I finally landed a job with coverage and started my routine doctor visits. This time I had more options. As a child I couldn’t consider biologic injections and oral medications, but as a working adult these options became available to me. The flip side was and remains that the medicine is harder to get because of high deductibles and regulations by insurance. I’ve also found that it’s harder to maintain insurance due to life situations such as layoffs or career changes.

There are vast differences between having this disease as a child through adulthood, yet there are a few similarities that I experienced in both phases of life. Doctors have fought to get me treatment no matter what age. As a teenager with severe psoriasis, doctors attempted to get me approved for Enbrel, which has only been authorized for adults over 18. I’ve even had doctors battle the insurance company to gain approval and decrease the cost of various medicines.

Though there have been many things that have changed there is one aspect of psoriasis that is too often neglected. From childhood until now there have been no coping strategies offered to me when dealing with this disease. Out of the approximately ten doctors I’ve seen in regards to my psoriasis, not one inquired on how the condition affected me psychologically. Although this disease appears to be a battle from the outside, the mental anguish faced as a psoriasis patient is life-altering and can even be virtually paralyzing. Patients need to know that there are other people in the world with this disease, and that there are resources outside of medicine to help them cope. Coping strategies are just as important as treatment. Although I have found organizations such as the National Psoriasis Foundation to help manage this disease, it wasn’t because of professional recommendation. I found them on my own at the age of 24.

I can only fathom how having support would have enhanced the overall quality of life for me if a doctor would have made me aware of these organizations at the age of seven. Although I have struggled to find a successful treatment, knowing that there’s support for the mental aspect of psoriasis will give me peace until a cure is found.

Now, psoriasis does not define me - I define it.

Alisha Bridges is the creator of Beingmeinmyownskin.com, where she blogs about life with psoriasis. She’s a community ambassador and volunteer for the National Psoriasis Foundation.

Cancer

Hope and faith are powerful medicine

We’ve partnered with Inspire, a company that builds and manages online support communities for patients and caregivers, to launch a patient-focused series here on Scope. Once a month, patients affected by serious and often rare diseases share their unique stories; the latest comes from North Carolina father Buddy Ruck.

“We have treatments that can help you survive for about two years.”

I remember those mind-numbing words spoken by my pulmonologist on February 18, 2011. I knew the doctor had a reputation for being one of the best pulmonologists in the area – but come on, how could he throw this news at me and make me feel like I was going to die and that was it? I remember thinking to myself that there had to be someone on this earth who survived this disease.

It had all started earlier that month when I called out of work thinking I had the flu. I went to my PCP to get treated. After a chest X-ray, CT scan, MRI and bronchoscopy/biopsy, I was told that I had small cell lung cancer.

How could this be happening? No! I have a wife and four young children at home. They need me! I was deeply depressed and couldn’t eat or talk about it. I pulled away from everyone because that’s all everyone could think and talk about and I wanted no part of it. I was told I was going to die and no one seemed to understand how I was feeling. Between not eating and loss of water weight through my tears, I quickly lost 20 pounds. So many thoughts went racing through my mind. Just a few weeks earlier I had a great life – a great family, career, friends and health. And now it was all gone in a matter of a few weeks? How could God let this happen? Why me? What did I do to deserve this? I was so angry that I actually told God that I hated him. I knew it was the wrong thing to do but I couldn’t stop myself from feeling this way.

Like many, I decided I wanted to educate myself on what I was up against. I remember trying to search for any longterm survivors of SCLC. I found one forum where there was a man who was a four-year survivor but he hadn’t posted anything new in more than three years. This is the only story I could find on the Internet showing some length of survival. I don’t know why it made me feel better, but it did. I guess it gave me some hope to hold onto.

While sitting with my wife in the waiting room before my PET scan, we cried together. I was so scared and had many questions. Had it spread all over my body? Will they tell me I only had months or weeks to live? When I met with my oncologist to get the results a few days later, I said to her, before she could say a word, “Doc, do I have any chance of beating this? My pulmonologist told me I may live up to two years with treatment.” I closely watched her body language. I knew I had put her in a difficult position, but what else could I do? I needed to know. She told me I was staged with limited SCLC because the disease was confined to my right upper lobe with no lymph node involvement. She replied with confidence, “Yes, you can beat this. We are treating to cure!”

I can’t describe how much weight was lifted off of my shoulders with just those two sentences. That was the turning point for me. It restored all hope, all faith. I can’t explain it, but at that moment I just knew I was going to beat this beast. Soon after being diagnosed, friends and their church members brought us meals and comforting words. These acts of kindness meant more to us than they will ever know. I knew God was there watching over me and my family.

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Chronic Disease, Patient Care

The day my doctor thanked me

We’ve partnered with Inspire, a company that builds and manages online support communities for patients and caregivers, to launch a patient-focused series here on Scope. Once a month, patients affected by serious and often rare diseases share their unique stories; the latest comes from Maryland resident Shani Weber.

I have Ehlers-Danlos Syndrome (EDS), a rare disease that most doctors don’t know much about. There are few specialists in the world, so I worked to find local doctors who were willing to learn about EDS and willing to help me manage it.

EDS is a genetic connective tissue disorder that causes the production of defective collagen. Collagen is found throughout the body so those with EDS can have problems with joints, skin, organs, GI system, vascular system, autonomic system, teeth, eyes, and more.

When I was diagnosed a year ago, I realized that if I’m going to get the best possible medical care, it’s crucial to educate my practitioners about the condition. I also knew, though, that I depend upon the expertise and knowledge of my primary doctor, specialists, and therapists. In other words, I needed to view my relationship with my providers as a partnership.

It’s not always easy to form a strong relationship with one’s doctors, but here are some ways I help to make my medical appointments more productive:

  • I write a summary of symptoms and interventions.
  • I provide charts or graphs, which give my doctors a summary of my health at a glance.
  • I write questions – no more than three per appointment.
  • I identify the objective for the appointment so my doctor can start thinking of treatment options.
  • I speak in a calm manner, understanding that a lot of emotion can take time away from finding solutions.

Since being diagnosed, I’ve gone to my primary doctor once every two months or so. Sometimes she orders tests. Sometimes she makes referrals to specialists. Sometimes she examines me. But every time I come to her, I bring information about EDS from the Ehlers-Danlos National Foundation, NIH, and various medical journals. It’s always material that is relevant to the symptoms I’m currently having, and she always accepts my offerings – laughing about how I supply her with Sunday-night reading.

On a warm summer day, I had the most incredible appointment with her. We got through the questions on my list and devised a treatment plan for new symptoms I was having. She examined my spine and verified that I’m subluxing my vertebrae. I gave her a copy of a study about hypermobility and its association with anxiety, and as we were finishing up the appointment she said the most amazing words to me.

Here is what she said, as I remember it:

I want to thank you for teaching me all you have about EDS. I now know EDS can mean anything can happen. I mean, we were taught in medical school that ribs are stable, but you taught me how they can dislocate. Well, it has made me look at the other EDS patients I have differently. It helps me be open to what they are saying and has meant they are getting better care. I’m also looking at my other patients differently. Now I keep wondering if each one coming in with odd or persisting problems could have EDS. I just want to say thank you.

I replied something along the lines of, “I want to thank you for being a really incredible doctor willing to listen to her patients, learn about a condition that’s new to her, research on your own time, and problem solving solutions no matter how bizarre the symptom is. Thank you for being my doctor.”

Then we hugged it out.

There are wonderful doctors out there who really care and are willing to learn. It’s important to know that building a relationship of mutual trust and respect can help both parties: Patients get the care they need, and doctors can become  more educated. Together, these partnerships can make a world of difference.

Shani Weber is a volunteer with EDNF. She advocates for those with EDS, co-leads a support group, moderates and educates about EDS on EDNF’s support community on Inspire, presents (.pdf) at conferences about EDS, and helps others build support groups. Shani lives successfully with EDS thanks to her husband, children, and brilliant medical team.

Stanford Medicine Resources: