Day 19: Chanelle's Heart Filled with Art

Stories of the Heart: Chanelle

http://artwithheart.org/blog/stories-of-the-heart-chanelle/


Written by Katy Bourne

After becoming depressed, lethargic, and losing grasp of her zest for life, Chanelle Felder knew that something wasn’t right. Because she was a lifelong dancer, she thought she was tuned into her body, yet over the course of a few months, she was beginning to notice that she was unable to move in the graceful and carefree way that she usually did. Her every step was slower, heavier, and—unbeknownst to her—a step in the wrong direction in terms of her well-being. Along with her labored movements, she also began to experience overwhelming fatigue, numbness in her hands and feet, hair loss, terrible acne, and a plethora of depressing ailments…along with actual depression! Next came weight gain and also “brain fog,” an inability to concentrate or even speak coherent sentences. She started having difficulty in some of her favorite classes. This was when her family knew that something was definitely wrong. After a long diagnostic process, an MRI revealed that Chanelle had a tumor on her pituitary gland and she was diagnosed with Cushing’s disease. She was just 16 years old.

Cushing’s disease is a condition in which the pituitary gland produces too much cortisol, a vital hormone that helps the body respond to stress, helps the metabolism of food, and even determines when you wake up in the morning, among other things. Cushing’s disease is usually caused by a tumor on the pituitary gland, which is located at the base of the brain. There are multiple symptoms: fatigue, weight gain, bone pain, stunted growth,  hair loss, muscle weakness, acne, confusion, depression and fatty deposits on the face and between the shoulder blades. Because symptoms mirror those of numerous other conditions, it is often difficult to diagnose, and the first line of treatment involves a special type of brain surgery to remove the tumor and, in some cases, the removal of the adrenal glands is necessary if brain surgery isn’t enough.

With the onset of her illness, Chanelle experienced a range of emotions. She was confused as to why this was happening to her. She was also angry and scared. She was worried for her parents and also struggled with the overwhelming new experience of hospitals, surgeries, medical procedures, complicated diagnoses, and the barrage of needles, IV’s, MRI’s and tests that were necessary to stop the madness that was tearing apart her body and her life. Because she had always been athletic and fit, the changes in her body were particularly distressing. She gained a significant amount of weight and developed “moon face,” a rounding and reddening of the face, which is a common symptom of the disease. “It was very, very difficult,” she recalls “and not being recognized by people that I’ve known my whole life is probably the hardest part of all of this”.

During Chanelle’s first hospitalization, a child life specialist paid her a visit and gave her a copy of Chill & Spill.  Being fiercely creative by nature, Chanelle took to it immediately. She says, “My first impression? I loved it.”

She was drawn to the artwork and liked the interactive quality of the book. She loved the quotes inside the back cover. “A lot of the quotes were so true and just helped me get through some things.”

The writing prompts were also very useful to her, especially when the brain fog made it hard to collect her thoughts. Chill & Spill became more than a journal for Chanelle; by adding her “own things” to it, it became a scrapbook of sorts, or a creative log of her experiences. “I took it everywhere with me, every doctor’s appointment and everything.” She invited people that she met along the way-nurses, doctors, friends and other patients- to sign the book and to write words of encouragement. “The book started out with being an outlet for me to get my thoughts and feelings on paper, but it really became a tool for me to connect to other people.”

Chanelle says that Chill & Spill reinforced that it was OK to feel whatever she was feeling. It also served as a chronicle of her strength throughout a very difficult ordeal. “You can use Chill & Spill as a tool to go back and look through your personal journey, and just see how strong of a person you’ve become out of your experiences.

Chanelle believes that anyone could benefit from Chill & Spill. “It’s all-encompassing. It can help you cope with something that you are going through, whether it is something that is a devastating event as in health problems or a death in the family or just everyday life. Everybody goes through a bummer day when they just need a place to chill and spill.”

Chanelle credits Chill & Spill with helping her get through her illness: “I am just so blessed and so thankful for what Chill & Spill has done for me and for all the things that have come out of just having that notebook. Chill & Spill helped me go from this place where there was nowhere else to go…to a place where now I’m just so thankful for everything I’ve been given.”

NOTE: You may purchase the book Chill & Spill at the Art with Heart Shop.

Day 18: CHANELLE: A Cushing's Survivor Story

Day 18: CHANELLE'S Back on her Feet after Brain Tumor

Back on her feet after brain tumor

September 23, 2008 12:15 am

Chanelle Felder was glad to learn she had a brain tumor; her debilitating symptoms had her thinking she'd gone mad. Chanelle Felder changes from ballet shoes to her pointe shoes between dances. The woman is recovering from Cushing's disease. Alycia Shaffer (seated , left) watches over a ballet class at Amyclae Dance Studio where Chanelle Felder (foreground, right) is practicing. A brain tumor left Chanelle barely able to walk and speak. Chanelle Felder (second from right) chats with classmates in her modern dance class at Amyclae Dance Studio. Chanelle spends countless hours in dance classes. Chanelle Felder (center) participates in a dance class at Amyclae Dance Studio in Stafford with Hope Janowsky (left) and Erin Bradley.

By CATHY DYSON

Chanelle Felder doesn't hide her battle scars when she's dancing with slender girls built like ballerinas.

She's too busy enjoying herself--and being grateful for all her experiences, including weird side effects from a rare disease that caused weight gain and hair loss, numbness in her feet and stretch marks on her shoulders.

"A lot of this, I would not change one bit," said the bubbly 18-year-old, who talks a mile a minute as she tries to get across all the thoughts running through her mind.

"If I hadn't gone through this, would I have met the people I've met? The doctors who were so amazing, even the people who wheeled me into the operating room? Would I have made the connections I've made? No," she said. "Anybody can have a great high-school experience, but would I really appreciate the stuff I have everyday if I hadn't gone through something? Not that I recommend people go through a brain tumor."

Chanelle was a 16-year-old junior at Mountain View High School when doctors thought a thyroid condition caused her extreme mood swings.

But her problems went far beyond crying for no reason. Her hair fell out in clumps and acne dotted her face. Pockets of flesh formed in her stomach and on her back, a condition she says is known by the lovely name "buffalo hump."

She gained 40 pounds in a few months. When she performed at the school's "Idol" competition in March 2007, classmates whispered she looked like she was pregnant.

The girl who had been a model, dancer and cheerleader--active in programs since preschool--had high blood pressure and trouble walking.

She couldn't put sentences together, much less express herself through poetry or creative writing, as she'd always done.

"I literally wanted to drop out of high school, and that was completely not me," Chanelle said.

The daughter of Rufus and Cathy Felder eventually learned she had Cushing's disease, a rare condition caused by a buildup of cortisol, a stress hormone.

A tumor right between her eyes, on her pituitary gland, caused the problems.

As devastating as the prospect of brain surgery last September was, Chanelle was glad to know what was wreaking havoc on her body.

"People had been telling me I was crazy," she said. "When they said I had a tumor, I was crying because I was happy I finally had a diagnosis."

Chanelle is thrilled to be active again, and these days channels her energy into dance.

After she graduated in June, she followed doctors' orders to take off a year before college. She's trying to get back in shape by working out with her dad, a retired Marine. The two plan to run the Army 10-Miler next month in Washington.

One day, she and her mother noticed a new dance studio off Courthouse Road in Stafford County.

Chanelle had taken dance classes from ages 3 to 14. But the disease caused so much pain to her feet, she could barely climb steps at times.

"The thought of not being able to dance was so painful, I didn't even want to talk about it," she said.
But she couldn't stop thinking about it. She talked herself into attending two days of programs at the new Amyclae Dance Academy, then signed up for 13 of the 17 classes for teenagers.

"I can't tell you what a lifesaver this was," she said. "The classes have only been going for two weeks, but they've been the best two weeks in the last two years."

Chanelle still has problems. She struggles with balance and a number of the demanding positions in advanced ballet. Still, she smiles.

"She just glows," said teacher Corey Holmes. "She doesn't just do the steps like a lot of dancers do, she radiates."

Studio owner Tina Singer has taught for 15 years and has never seen anyone inspire others like Chanelle. "Her eyes light up with every step she takes," she said.

Recently Chanelle chatted with students, teachers, parents, younger siblings and anyone else in the room. She told a girl at the front desk how much she liked her haircut and a fellow student that she had the same kind of shoes.

When Singer--also known as "Miss Tina"--coughed in class, Chanelle asked if she still had bronchitis. An hour later, after Miss Tina put the ballet students through a rigorous workout, she asked the class members to look like they were enjoying themselves.

"They're normally a happy bunch, they really are," Miss Tina told a visitor.

Chanelle was the only one who responded. Her face was aglow, even as she grimaced through some of the steps.

"I'm always happy," she said, "even though it hurts."

Cathy Dyson: 540/374-5425 
Email: cdyson@freelancestar.com

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HER FUTURE Chanelle Felder, 18, plans to rebuild her strength this year, then attend community college for two years. After that, she'd like to follow in the footsteps of her father and be a social worker. Rufus Felder spent 20 years in the Marine Corps, then earned a degree from Virginia Commonwealth University. He works in Washington with substance abusers. Chanelle sees social work as another way of expressing herself and helping others. "Poetry is emotion, dance is emotion, social work is emotion," she said.

HER ADVICE Chanelle Felder struggled with various symptoms for eight months before she was diagnosed with Cushing's disease, a rare condition that affects 10 to 15 of every million people. Only 10 percent of its victims are children or adolescents; the rest are ages 20 to 50. Chanelle kept track of her "weird symptoms," which varied from physical problems, such as numbness in her hands and feet and weight gain, to emotional issues, such as crying uncontrollably and feeling panicked. She suggests that others with medical problems do the same. "I thank God every day for doctors, but they're not gods, they're humans," she said. "You know your body better than anyone else. Listen to your intuitions about what's wrong with you."

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Copyright 2012 The Free Lance-Star Publishing Company.

GUEST POST: Best Kept Secret in Medicine

Sharmyn McGraw emailed this last week. You can read my previous posts about Sharmyn for some of the best info we have about Cushing's--from the patient's perspective here and here.

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~IMPORTANT PLEASE READ~ Ms. McGraw is a patient advocate, professional speaker and published author. As a volunteer she facilitates the Pituitary and Brain Tumor Patient Support Groups for the Brain Tumor Center at the John Wayne Cancer Institute. All comments are based on Ms. McGraw's personal experiences and she is not responsible for any miscommunication. Ms. McGraw is not a medical professional. Always consult your own medical doctor. 

Hello everyone!

Please take one minute and watch this video, Dr. Daniel Kelly from the John Wayne Cancer Institute in Santa Monica, CA. 

Pituitary gland problems have many symptoms (video and article)
       *(melissa says, "then share it with all your friends on facebook!"

Many of you know I am a national spokesperson for those afflicted with Pituitary Brain Tumors and/or Hormonal Disorders-The Best Kept Secrete in Medicine. And don’t panic, I have never asked anyone for a financial donation and I’m not now, but I do need your help.

I receive over a 150 emails a day and many of them are from people asking me to pass along a prayer or some damn thing to a zillion of my closest friends or you and everyone you know will have some angel pissed off and there will be no blessing for you….! WELL, it’s time we pass around something that can really make a difference in your life or even save someone’s life-I promise!!!!

Through the years I have done professional speaking, TV shows and written articles all to help raise awareness for those afflicted with pituitary disease. But the biggest impact was the show I did for the Discovery Health channel, Mystery Diagnosis; the show features my story living undiagnosed for seven horrible years with Cushing’s disease, caused by a pituitary brain tumor. Thank God the show is still airing and still saving lives!!! So please send this email to a zillion people to help make an even bigger impact!!!! And watch the ABC special with Dr. Kelly and pass it to all your friends, put it on FaceBook, YouTube, and Tweet your friends. Healthcare needs our help!!!

I have received hundreds of emails through the years and met hundreds of people whose lives were forever changed because of one TV show. Literally because of one Mystery Diagnosis episode people have been correctly diagnosed with a disease that doctor after doctor missed for years and years. Sadly in many cases because of a prolonged diagnosis it left the patient disabled, not because the pituitary tumor wasn’t treatable but simply because of lack of current and accurate information among our medical professionals and the public.

Pituitary tumors are the Best Kept Secrete in Medicine because they are so often misdiagnosed but can cause so many people to suffer or even worse die without proper treatment. Usually the patient symptoms present as multiple common health issues and unless your medical professional is trained to recognize the signs and symptoms related to a hormonal disorder caused by a pituitary tumor the patient is often left undiagnosed or treated for many different health conditions but never getting to the root cause.

The hard facts are we lack proper education so severely in the US about pituitary tumors and/or hormonal disorders that even our highly respected Dr. Oz made a completely inappropriate comment on TV about a patient that was found to have a pituitary tumor on the Oprah show. His statement was something about simply “plucking” a pituitary tumor out which is a perfect example of the lack of education even among a medical doctor who is looked at by many people as a know-it-all of medicine. But no one medical professional knows everything; however, when a patient presents with a laundry list of poor quality of life issues or a pituitary tumor is found on an MRI it certainly warrants a proper medical evaluation and if it is out of the doctors expertise they need to step up and refer their patient for another opinion.

Pituitary disease is a subspecialty field of Neuro-endocrinology. Obviously as a cardiologist it is out of Dr. Oz’s expertise but like many medical professionals, grossly downplaying the severity of a life threatening illness or not admitting when something is out of their level of expertise is just bad healthcare. Most pituitary patients go far too long without a proper diagnosis and in far too many cases never getting a diagnosis at all. We have been trained to trust our doctors and assume we are getting the best medical treatment; unfortunately when it comes to a pituitary disorder that just isn’t the case.

Pituitary tumors and/or disorders can cause: Rapid weight gain (obesity) or weight loss, heart disease, diabetes, high blood pressure, depression, anxiety, infertility, low libido, sleeplessness, hair lose, abnormal hair growth, enlarged hands/feet/jaw, blindness, and more. Most people suffer for years with a pituitary tumor and are most often told by their physician, “It’s all in your head. Exercise more and eat less” Well they are party correct but for all the wrong reasons...the pituitary gland sits at the base of the brain, and yes, hormonal disorders caused by a pituitary tumor can at times make the patient feel mentally unstable but more exercise and eating less is not proper treatment for a serious brain tumor. And we need better education for our medical professionals.

Studies show one in five adults may have a pituitary tumor-that’s 20% of our population. A healthy pituitary gland is as important to our quality of life as a healthy heart, liver, kidneys, and any other major organ or body part.

The good news is pituitary disorders in most cases is a treatable illness if a timely and accurate diagnosis is made but unfortunate they are life threatening when left untreated. So please take time to educate yourself and others about the Best Kept Secrete in Medicine. Please pass this email to everyone you know and FORSURE you will be improving someone’s life and you could even be saving someone’s life.

Many blessings,

Sharmyn McGraw

www.brain-tumor.org or www.hormones411.org
 

~IMPORTANT PLEASE READ~ Ms. McGraw is a patient advocate, professional speaker and published author. As a volunteer she facilitates the Pituitary and Brain Tumor Patient Support Groups for the Brain Tumor Center www.brain-tumor.org at the John Wayne Cancer Institute. All comments are based on Ms. McGraw's personal experiences and she is not responsible for any miscommunication. Ms. McGraw is not a medical professional. Always consult your own medical doctor.

Sharmyn McGraw, the face of Cushing’s

Sharmyn McGraw is by far the most public face of Cushing’s. As a survivor of Cushing’s, she has made it her crusade to bring awareness to this disease. After spending seven years searching for a diagnosis, Sharmyn now spends her time educating both patients and the medical community. So many people have seen Sharmyn's story and have started testing for Cushing's as a result. We all thank her for stepping out and sharing her story. We are all very proud of her.

MYSTERY DIAGNOSIS

Sharmyn was also featured on a segment of the show Mystery Diagnosis on the Discovery Health channel. Isn't it a pretty bad sign when the disease you have is featured on a show called Mystery Diagnosis?!

Program description: "Lethal Diet. Parents deal with a son with sinus infections and unsteady feet. A woman gains weight, has oily skin, hair loss, body cramps, and irritable bowel syndrome."

The Cushing's segment airs every few weeks or so. Sharmyn's story airs about 20 minutes into the hour long show. You can set your Tivo or DVR to pick up this show. I just set mine to save 3-4 episodes, and then routinely delete the shows that do not have it listed in the program description.

YOU TUBE OFFERINGS OF SHARMYN'S MEDIA APPEARANCES
Here are some YouTube videos of some of the segments that aired about Cushing’s. You can visit her website at http://www.hormones411.org/ to view all of them.


Sharmyn McGraw on the Montel Williams show

Sharmyn McGraw on NBC News in Los Angeles

Sharmyn on news: surgery and recovery in 18 months