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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.

Cancer, Mental Health

After the cancer is gone, the real work starts

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 New York’s Britta Aragon.

“You have cancer.”

For many, these three words feel like a death sentence. I was only 16 years old when I heard them.

I had Hodgkin’s disease, diagnosed after I found a strange lump on my neck. I went through surgery and chemo, and after about six months, I was pronounced to be in remission.

Cancer and I came to a fairly quick understanding – physically, at least. But as many survivors know, the disease’s emotional impact was much more difficult to manage.

I was bald, overweight, bloated. My skin had lost its radiance, and my peers felt sorry for me. That was the last thing I wanted.

My friends, family, and relatives wanted me to “move on,” but I was confused and had no one to talk to. I now know that survivors need support groups, counseling, and other types of therapy to manage their experiences, but I had none of that, so I turned to the only thing I could control – food.

For the next several years I would battle with an eating disorder without even really knowing why. While I tried to recover, cancer came back into my life – bigger and meaner than before.

In 1999, my father was diagnosed with colon cancer. He was my hero and my best friend, so the news was a huge blow to me. Still, he was full of strength and optimism, so I was sure he would get through it, just like I did.

I was right. He beat the cancer four times. But the fifth time, it formed a tumor in his brain, and after an exhausting eight-year battle, it took my father’s life in 2007.

I had crying spells that seemed uncontrollable. I felt like I was in some other world between here and there, and not really present in my day-today life. And I was angry. Why should cancer have taken my father, when it didn’t take me?

Psychiatrists now know that many cancer survivors go through something similar to post-traumatic stress. I’d venture to say that many caregivers do, too. And while our medical professionals are trained to deal with the cancer, for a long time there have been few resources for dealing with its aftermath.

Fortunately today, cancer centers and hospitals are starting to put into place programs to help people cope. In the wake of my father’s death, the one thing that helped me was finding a way to help others with my experience.

I dove into creating a new blog that would provide needed information for survivors like me, and after a couple years, also wrote a book about the experiences my father and I went through. Working on these projects not only helped me make meaning out of the challenges I had faced, but helped me to build a new, healthy life for myself. Today, I eat a healthy diet that nourishes me from the inside out, and I have a spiritual practice that keeps me grounded. My work fills me with joy and a sense of purpose. I love interacting with a community of people who experienced the same things I did, and I’m always looking for new opportunities to expand the knowledge I’ve gained.

Cancer changes us – there’s no doubt about that. It’s up to us to decide who we will become.

To honor her father’s legacy, safe cosmetics expert, author and entrepreneur Britta Aragon created the Cinco Vidas blog, wrote a book to help the newly diagnosed called When Cancer Hits, and created CV Skinlabs, a safe skin care line for those with sensitive and medically treated skin.

Cancer, Patient Care

Asking the hardest questions: Talking with doctors while terminally ill

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 Jessica Rice, who was diagnosed with terminal lung cancer at the age of 30.

Since becoming ill, I’ve learned that I have the innate ability to make doctors very uncomfortable – squirmy, even. It’s surprising because I had assumed medical professionals with decades of experience have fielded every possible question a patient might ask.

But I suppose I’m not a typical patient. In November 2011, I was diagnosed with stage IV lung cancer (bronchioloalveolar carcinoma, a subset of adenocarcinoma) with extensive spread to the mediastinal and hilar lymph nodes. At the ripe old age of 30, I joined a very exclusive club of young, non-smoking women with this rare cancer.

What I’m discussing with these doctors is no picnic. While there’s a sprinkling of terminally ill 30-somethings out there, we’re not a common sight in most oncology offices.

My biopsies were immediately tested for genetic mutation and found to be ALK+. Crizotinib had received FDA approval a few months earlier, so it was the logical first course of action. The pill was successful for three months before two things happened: toxicity set in, and my cancer grew resistant. Next, I tried two different chemo cocktails; both failed. I joined the LDK378 trial in November 2012 and had an excellent response. Unfortunately I experienced very painful side effects which led to dose reductions below protocol. I was likely getting booted from the trial and taking a break when I had a seizure this past June.

My MRI showed five brain tumors, along with small lesions I affectionately termed “brain lint.” After two CyberKnife sessions, a few tumors shrank, a couple grew, and five more sprouted from that innocent looking brain lint. It was time for whole brain radiation.

Through all this I’ve worked with more than a half-dozen doctors and surgeons. Some have impressed me, a couple seemed lacking in one area or another, and one even managed to capture my heart. Regardless, I’ve unintentionally made all of them uncomfortable at one time or another.

It could be my tough questions.

I consider myself a down-to-earth, logical creature; looking at the facts and hearing the truth is strangely comforting to me. This is why I recently asked, “What will dying be like if it’s the brain tumors that kill me? Will it be sudden, like a seizure with an uncontrollable brain bleed?” I had asked this question long ago in relation to lung cancer, but it now seems more likely that the brain tumors will lead to my demise.

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Chronic Disease, Pain

Fibromyalgia – living with a controversial chronic disease

Fibromyalgia – living with a controversial chronic disease

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 health writer Marijke Vroomen.

I can’t imagine anyone relishing the idea of being tired, in pain, or suffering from “brain fog” for one day, let alone for months or years. If you have fibromyalgia, this is what you experience on a regular basis. Yet there are people who believe that fibromyalgia doesn’t exist – that it’s a made-up disease with the purpose of appeasing patients, giving their complaints a name.

Incidences of muscle pains characteristic of modern-day fibromyalgia have been documented for centuries, but only in the 1970s did the disease begin receiving serious attention as physicians began to better identify trigger points, inflammation, and fibromyalgia-associated issues such as sleep disorders and irritable bowel. And only in 1987 did the American Medical Association recognize fibromyalgia as “an emerging condition.” But saying it’s a disease and convincing non-believers are two different things.

I’ve been asked what it’s like to have fibromyalgia and, just as it’s difficult to diagnose, it’s difficult to explain. Although I was only diagnosed a few years ago, I can trace the symptoms to my teens. I often experienced unexplained bouts of exhaustion and pain. I never slept well. I had other fibromyalgia-related physical issues, but no one could figure out what was wrong. After a while, I began to believe that it was all in my head. I knew I felt the pain, but there was no explanation. I knew I was exhausted, but everyone is tired – why would I be any different? The other symptoms? I was overplaying them, complaining too much, imagining them, looking for attention, wasn’t I?

My family and close friends were (and still are) wonderful. They never made me believe that I shouldn’t be feeling what I was experiencing. They tolerated my quirks, such as the hypersensitivity that results in a very strong startle reflex and not being able to stand the feel of certain things against my skin. (It wouldn’t surprise me if the princess in fairy tale The Princess and the Pea had fibromyalgia!) My husband, my children, my friends, all helped me when the pain was bad and the exhaustion overwhelming. But feeling so different and not knowing why take a toll on a person.

I did what many with fibromyalgia do. I withdrew into myself. By withdrawing, you minimize your chances of being criticized or attacked by those who don’t understand your “nonexistent” illness. But at the same time, because you are internalizing everything, your symptoms become worse. Your mind plays more games. And the cycle continues.

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Cancer

Speaking up about being a cancer survivor

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 Florida journalist Aleka Leighton.

I was reading a post recently from a newly diagnosed thyroid cancer patient in my online support group. She wrote that she was getting nightmares from reading the stories she saw on the site and, also, that she didn’t want to live with what thyroid cancer means to her now. At that moment, I considered how my own life had changed. One year ago, I was that woman. I was afraid to know, afraid to be informed, afraid to wait, afraid of the doctors, the hospital, the labs, afraid about whether my life was going to change or not. Was I going to be the same after the cancer?

My story dates back to November 2011, when I went to an otolaryngologist because I had an ear infection that my primary doctor tried to treat but that was still causing me discomfort. The doctor thought that it was earwax, so he removed it. But when I was ready to leave, he suggested that he check my nose, mouth and neck ”since you’re already here.” He started to touch my neck and then told the assistant that he felt a nodule in your thyroid. “But don’t worry about it,” he told me. “A lot of women have it and it’s very common. You just need to have a neck ultrasound and I’ll see you in three weeks.”

And thus began the rollercoaster ride that included Internet searches at home, consultations with doctors, more research, and some tears.

In January 2012 I met with an endocrinologist, and here is where my story completely changed for the better. The endocrinologist performed the FNA (fine needle aspiration) biopsy and explained to me everything I needed to know – the potential problems, the potential treatments. No more Google searches. No more questions. I was with the right doctor, finally. Just several days after meeting him, he told me I had papillary thyroid cancer. And at that moment, I thought to myself, “You can start crying, or start fighting.”

I chose to fight.

After the RAI and subsequent surgery, you feel tired. You gain weight. You’re moody. Your skin is dry. You’re always worrying about remembering to take a pill that you’ll need to take every morning for the rest of your life. It felt like being 13 again – but in the body of a 44-year-old woman. I also at times felt like I knew too much, and thinking about life without a thyroid was scary.

But it hasn’t been all bad. My thyroid cancer was found early (something I thank God for every day), and I’ve gotten much information and support from the organization ThyCa, which my endocrinologist told me about after the surgery. I was forced to find out what life is like without a thyroid (including the changes to your hormones and your mood), but I’ve benefited from the tips and wisdom of those people online who have been dealing with thyroid cancer issues for much longer. (Doctors, I encourage you to support patient support groups like the Inspire/ThyCa Support Community and to embrace the wisdom of informed patients. We can help you learn and be more prepared as you treat patients.)

More than one year after my surgery, I’m among the many thyroid cancer survivors out there. I’m now active in sharing my story and telling my friends and family to “check your neck,” and I thrive on the support I get from various online communities. I’m more educated now, and I always speak up.

Aleka Leighton, a native of Chile, is a journalist who lives with her husband in Miami, FL. She works to create awareness in the Hispanic community about thyroid cancer.

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