A Cushie Tale: Chondra

I was so happy to read my newsletter from the Pituitary Network Association (www.pituitary.org) yesterday. Chondra's self-diagnosis is quite common among Cushies including myself. May both sides be reminded that patients know their bodies best, and medical professionals should be there to help, not mock. Basic advice, but life-saving. 

Hug a Cushie you know. Their bravery can never be discussed too often, particularly in a world who hardly admits they are sick. -m 

Excerpt from Pituitary Network Association's newsletter:

"SELF-DIAGNOSIS: CUSHINGS

The online article linked below emphasizes why the PNA and increased media exposure are so important and why pituitary tumors and disorders need more attention than they currently receive. If this woman's doctor had been more knowledgeable, if the symptoms were more readily known she may not have had to diagnose Cushing's herself. The internet has become an invaluable tool in helping pituitary patients worldwide get the diagnosis they so desperately need. However the diagnosis is just the first step. Getting the right treatment by physicians who have pituitary experience is also necessary. The PNA is an essential resource for Pituitary patients to help find the best medical care available to them in their area."

Read Article

NOTE: photo 3 was not included in this post only because the iPhone limits attachments to five photos.

In Loving Memory: Kym Grupido

Thank you to Boise Glow for Cushing's Awareness for sharing Kym's story as part of their continued efforts to draw attention to this terrible disease.

My heart breaks for Kym, her family, and all those who knew and loved her.

For more about Kym's life and battle with Cushing's, click to read her sister's loving account.

Editor's Note:  While the Cushing's Support & Research Foundation (csrf.net) would like to print only positive stories, many Cushing's stories are very sad.  Kym's story illustrates that even with all our current technology and diagnostics, more awareness is desperately needed.  We hope Kym's story tugs at your heartstrings and will perhaps motivate you to share your own story in a local paper, if you have not done so already.   If Kym's family and doctors had been aware of Cushing's, there is a good chance Kym would not have died.  It is for this reason the CSRF feels strongly that her story needed to be shared.

Click to enlarge.

A Truncated Life or A Path with Purpose

With all this time today online on a laptop (instead of my iPhone), I stumbled onto my post announcing here that the second pituitary surgery FAILED on May 16, 2011. That's over a year ago. That was 413 days of my life, gone, can't get back, because of Cushing's.  That's 1 year, 1 month, 16 days of not feeling well, not having answers, and not being myself.


When I see that in writing - always more real than living it, somehow - I get teary-eyed.
So many days of suffering.

So many days of heart ache.

So much loss of life. 

Yes. I mean that.

Loss of life.


It may not be many in terms of number of people. I concede that.  

In terms of quality of life, it is unquantifiable. 


Cushing's has done irreparable damage, and that makes me hard to forgive it.  My husband and toddler suffer collateral damage. Cushing's places countless limitations on me cognitively, emotionally, and physically that my family sees, just as I live my daily life.  They don't get to live a full life with me if Cushing's won't allow me to live my full life.


In terms of the every day and big-dream things Cushing's keeps me from doing, boy, the damage is really immeasurable.  I feel the loss of my soul. I miss my identity. Not that I ever really knew who I WAS  was. Seriously.  But I did know what I liked to do, did them, and loved doing them.  So if I am not what I do, but who I am, then Who am I now?

My friend Ashley concurred.  She said, "I feel that way, too.  I feel Cushing's has silenced me... like I was on the verge of something really good, and then Cushing's came along and said, "Shut up. No one can hear you now." 


Word, Ashley. SILENCED. That is so it. I feel that way, too.  I feel like the trajectory of my life has forever been altered by this disease. I hate that part. It really makes me angry.


I think back to when I was a young girl.  I felt average. Not better, not worse than others.  Definitely not more special.  However, I always felt, for some reason, that I was gonna do something BIG, something great. I don't remember (sadly) anyone really telling me that, so I don't know where it came from.  I didn't have any talent to pinpoint, so that wasn't it, unless quoting scenes from 80s movies is a talent.  My family didn't have talent shoes I could step in (sorry family, if you are even reading this).  Regardless of its origin, this feeling really is something that I just carry around with me. Any second, any day, I am thinking this purpose will pop out like clowns in a circus car. 


My life will make sense, and I will have found my purpose.


I don't know yet what that purpose is, but I feel sure that my something great has not happened yet. I am also unsure if Cushing's will hinder that greatness or amplify it. I hope, beyond hope, it is the latter. And more than ever, I hope this purpose presents itself sooner rather than later. I don't know how much longer I can hold on.

Our Friend Jordy Tells His Cushing's Story of Multiple Surgeries

Our Friend Sherry Shares her Cushing's Story

Cushing’s powerpoint

View more PowerPoint from SherryC1234

Chanelle hits the news again

I just love this fireball Chanelle.  You have seen her featured here in several posts (here, here, here, and here). Well, here she is again, and I'm very proud of her. This brought tears to my eyes. Keep going, Chanelle!  ~mm

Grad perseveres to earn degree

May 8, 2012 12:10 am

Chanelle Felder's struggle with Cushing's syndrome prompted her to pursue a career as a patient advocate. Felder took ballet in 2008, during her fight with disease. Chanelle Felder battled cyclical Cushing's syndrome in high school. She graduates from Germanna Community College this week and is preparing to pursue a bachelor's degree at a Virginia university this fall.

By PAMELA GOULD

Chanelle Felder found her mission in life through the mysterious illness that left her mind in a fog, her body bloated and her high-energy lifestyle on hold.

"I was directionless before," the 22-year-old said. "Now I have a laserlike focus on what I want my legacy to be and what I want to get out of life."

Felder, who graduates from Germanna Community College on Wednesday, was 16 when her slender 5-foot, 7-inch frame started expanding inexplicably.

She began having crying spells, waking in the middle of the night, and suffering numbness and pain in the feet that for years had carried her gracefully across dance floors.

Clumps of hair started falling out, she became sluggish, and her normally sharp mind started going blank.

Felder was a Mountain View High School junior, cheerleader and honors student when the symptoms began. She found them shocking and frightening.

Doctors offered possible diagnoses such as a thyroid disorder, but none fit until the North Stafford teen stumbled upon a program on the Discovery Health channel.

"My turning point was an episode of 'Mystery Diagnosis,'" she said.
A woman named Sharmyn McGraw was describing the symptoms of Cushing's disease. Felder immediately saw her own situation.

She went online, did research and told her parents that's what she had. The rare disorder afflicts 10 to 15 of every 1 million people. It's even rarer in children and adolescents.

Though her parents supported her self-diagnosis, doctors were slower to get on board. But after medical tests confirmed it, she underwent brain surgery in September 2007.

That first surgery removed a benign tumor from her pituitary gland. However, the symptoms returned, prompting a second brain surgery to remove more tumors in January 2009.

It turned out that she had cyclical Cushing's syndrome, a condition in which the symptoms disappear and then return.

When the second surgery didn't resolve the problems, Felder opted to have both adrenal glands removed in April 2010.

That procedure eliminated the Cushing's symptoms because it's driven by the hormones produced by those glands, which sit atop the kidneys.

But removal of the adrenals meant she was without the hormones they produce, which, among other things, help people cope with stress.

She now takes four medications daily to regulate her endocrine system and keeps a close watch on her stress level. But her bubbly personality and energy are back.

MOVING FORWARD

Felder graduated from Mountain View High in June 2008, nine months after her first surgery.
Then, on a doctor's advice, she waited a year to start college.

Her parents urged her to ease into her courses, so it's taken her three years. However on Wednesday, Felder will walk across the stage at the Fredericksburg Expo and Conference Center to receive her associate degree in arts and sciences.

"She's been inspirational to other students," said Judi Johnson-Bartlett, coordinator and student adviser at Germanna's Stafford Center.

Johnson-Bartlett rattled off adjectives to describe Felder: determined, hard-working, dedicated, persistent. "The sky is the limit for her."

Felder majored in science while taking classes on the Germanna campus in Spotsylvania County and at the recently opened Stafford Center.

She frequently drew on her experience for class projects and presentations.

The time spent researching her diagnosis and staying abreast of the steps in her treatment gave her an understanding of medical science and terminology she wouldn't have learned otherwise.

It also redirected her interest from a career in social work to one in which she plans to serve as a patient advocate.

If it hadn't been for a dash of teenage defiance, the support of her parents, and the prayer and encouragement of people at Mount Ararat Baptist Church, Felder said, she'd probably still be suffering.

That's why she wants to study the dietetic field next fall when she attends Virginia Tech or James Madison University and why she's also interested in communications.

"My ultimate legacy will be to get information out about this disease and about other diseases like this," Felder said.

She also wants to provide the support for others that she received during her medical ordeal.

She's already part of an online network of Cushing's patients who share their stories; some of them have been heartbreaking.

She said some people have been ostracized by relatives who don't understand their symptoms, or worse yet, suggest they're lying and just lazy when their weight balloons and they lack energy.

Others have died from symptoms related to the disorder.

Many, she said, just resign themselves to a life of suffering after medical professionals brush off their symptoms or aren't familiar with the disorder.

Felder said her mission crystallized as a result of Facebook communications with a man in California with Cushing's syndrome.

She shared the treatment she'd undergone, and in her he found hope and committed to the same path.

He underwent surgery and messaged her recently to say, "You saved my life."

Felder became teary as she shared that encounter.

"Just to think I was just a 16-year-old girl. For me to go through that and actually help someone, it made me see it wasn't in vain," she said, pausing to keep her composure.

"That's why I went through it--to help people."

---

Germanna Community College will hold its spring graduation ceremony at the Fredericksburg Expo and Conference Center on Wednesday at 7 p.m.

Chanelle Felder is scheduled to sing the national anthem as part of the commencement exercises.

---

Copyright 2012 The Free Lance-Star Publishing Company.


A special thanks to Pamela Gould (540/735-1972, pgould@freelancestar.com) for the excellent story.

Day 4: Around the Cushie World in 30 days: Ashley's Pituitary Surgery

Today, I bring to you a profile of my friend Ashley R. She does not blog, but she should.  Ashley and I have been writing each for many many months online.  I have used everything in my arsenal of knowledge to guide her, and she has been an excellent student.  I take my role as Cushie advisor very seriously, and Ashley took my advice and made her own journey shorter as a result. I am very proud of her diligence and persistence, despite being very ill.

I finally met Ashley R. in Los Angeles this past January 2012.  When she saw our shared doctor, Dr. Friedman, I drove her to the appointment.  

Beyond what I have taught her, Ashley R. has been a wonderful teacher to me.  She has become one of many Cushing's patients for whom I have deep admiration.  Most importantly, Ashley R. and I have had many discussions, including how to enhance our outlook in order to create our new destiny without Cushing's and despite Cushing's. We are both committed to moving on to powerful and healthy lives that we have only because of the Cushing's.  For this and many other reasons, I am proud to call Ashley R. my friend.  I find her so compelling that I asked her permission to share her story here for you.  

Ashley R. is having surgery in Houston at the MD Anderson Cancer Center on Friday, May 4 at 8 am.  Please keep her in your thoughts and prayers.

**************

"You have a brain tumor? What the heck is Cushing's Disease?"

by Ashley R. on Thursday, May 3, 2012 at 4:20am ·

I've spent much of the last year being quiet about the changes in my body and mind. Yes, there was chronic illness and debilitating/disfiguring symptoms, but I never really wanted to take ownership of what was going on - it always seemed like an invader to my body. I certainly didn't want to worry anyone unnecessarily and I definitely didn't want to jeopardize any professional contacts by littering my Facebook profile with too much medical information. For the most part, I tried to keep as normal of a schedule as possible.

... but I knew things were changed. I knew that I couldn't keep up appearances for long... so I (as gracefully as I could), withdrew from everything but what it took to survive. If you were a part of my life that didn't make the cut, you likely saw my involvement dwindle. I promise, I wasn't trying to hide. I was trying to survive. I am fighting so I can come back to full involvement. I promise, I'm almost there.

So here I am, about a year and a half out from the initial start of this mess, and I am ready to put pen to paper and explain what happened. Before I start, I need to be laser clear on a few things:

1. I am so grateful for the healing that this journey has brought to my life. This process flipped my world upside down... and in the process, forced me to confront things that I had avoided. 

2. I am confident that this is already cured and I am already healed ... my body is not broken, and this was no mistake. I don't write this for sympathy -- I've already grieved for what I thought I had lost. I write this story today from a place of gratitude... gratitude for my friends and family who have supported me through this and gratitude that I was trusted with this story. My prayer is that I say what needs to be said and that there be no mistaking that Jesus has been in control of the outcome from the beginning. I am at peace with what happened. 

Understanding that, let's start at the present.

Today, I lay in bed in a Houston hotel awaiting my turn to see one of the top neurosurgeons in the country. Tomorrow, I will undergo brain surgery to remove a tumor from my pituitary gland. Today, I pray, is the last day Cushing's Disease is allowed to be in my body.

What is Cushing's Disease?

Ever heard of the stress hormone, cortisol? Cushing's Disease is simply (ha!) an overproduction of cortisol in the body, usually caused by a tumor that overproduces the "give us more cortisol" hormone (ACTH).

Picture for a moment a time in your life when you experienced EXTREME STRESS. Perhaps you went through a trauma of some kind...perhaps you had a point in time where you had too much "critical" stuff to do and not enough time. Picture how your body felt - your muscles twitching between super strong and super goo, your heart beating fast, your head going from clear to mush... your appetite dropping only to hours later leave you ravenous... your body switching to survival mode with only one objective: run away from the tiger before it eats you.

Got it?

Now picture never being able to shut that off.

That, is the only way I can give you a glimpse of what this disease process looks like.

Take a few moments and watch this video - it explains the technical side of things quite well. It is worth the 6 minutes.

How did it happen to me?

I'm not really sure... but as I looked over the patterns in my life, it is entirely possible this is something I've been cycling with since I was a young girl. We started to get suspicious January 2011 when an overwhelming amount of fatigue took over my body and I gained about 30 pounds in 30 days - while dieting, walking 3 miles a day, and regularly practicing EFT to work through the emotional side of things. Something was wrong, something was very, very wrong.

As I scrambled for answers (surely, I had to be doing something wrong), a friend mentioned Cushing's. I scoffed, "now why would I want that? That's not fun."

A few weeks later, Samuel picked me up in San Luis Obispo and drove me to Seattle to be seen and have initial tests run. When the tests came back showing that we were on the right path, the choice was made immediately to move me back to Seattle permanently.

I didn't struggle through doctor after doctor who told me I was crazy. I didn't have the energy for that... I went straight to one of the leading experts on Cushing's Disease. For 8 months, I tested - blood draws, 24 hour urine collections, and saliva tests... Over and over again. Trip after trip to the lab. It was an exhausting and humiliating experience. Scratch that... it was an exhausting and humbling experience.

I tried to stop the process. I tried hard to fight it. When I stopped fighting it, there was a bit of a lull to the process. It made no sense. Throw everything you know about your body out the window. I was gaining weight eating a clean paleo diet and could get the weight gain to stop if I ate crap junk food. It made no sense. None. It still doesn't.

By September, most of the changes in my body had already occurred. I had gained about 150 pounds in a little over 7 months. My waist circumference doubled. My hair fell out. Reddish purple lines striped my arms, shoulders, and chest. Pads of fat seemed to grow both at the back of my neck AND on top of my collarbone. My face COMPLETELY changed. My moods altered and I fought against rage in my body. My skin turned both bright red and orange. Anxiety and paranoia were present daily. 

While I've avoided posting pictures over the last year, I feel like none of these words can quite show the change like this photo can. This my friends, is what the diagnostic process cost me physically. 

end of December 2010   -------------------------     April 2012

Dramatic, eh?  It was only 16 months.

I've tried (sometimes unsuccessfully) to rationally think through these changes. I've tried to keep perspective - that most of these things I felt were caused by the hormones NOT by real threats. In short: I did everything I could to not BLAME this disease process for any of my shortcomings. There were definitely limitations, but I refuse to give in completely and let this disease process take more than it needed to.

We found the tumor in October via MRI. You'd think, with an ever growing mountain of evidence supporting a diagnosis AND a visible tumor, that the doctors would be clamoring to take that puppy out, right? That just wasn't the case.

Midway through November 2011, I learned that my doctor was retiring his practice and moving in to drug research. I never managed an official diagnosis out of him -- the day he left his practice, he had spent 8 months being "highly suspicious" but never committal. Is this a doctor thing or a man thing? Who knows.

my buffalo hump

In January 2012, I flew to California to see another Cushing's specialist. There were several of you who prayed for and helped fund this trip. I am eternally grateful for your generosity.

When I met one of the doctors the first thing he said to me was, "Why hasn't anyone helped you before now? Why did they let you get this sick?" I do not have an answer to that question.

I spent most of February and the early part of March doing one final blitz of testing. In truth, the doctor likely had enough to make the final call, but needed tests that he had ordered to come back positive to do the whole CYA thing. 

Mid March 2012, almost a year to the day of my first appointment to discuss Cushing's Disease, I had a diagnosis: Cyclical Pituitary Cushing's Disease. 

Over the year and a half of progressively getting sicker, I was asked many times why I fought so hard for a particular diagnosis. After all, most people are traumatized when they hear they have a tumor and a life threatening illness. I, on the other hand was relieved.

I have a short answer to this: I needed 100% written proof, verified by a professional, that I did not intentionally do this to myself. I needed that proof for me... and for anyone else that would raise an eyebrow to me.

Sound strange? Sound selfish? Sound a bit ridiculous? Probably.

You see, I grew up an overweight child. I was blamed, from the age of...oh...8 or 9... for my weight problems. I've had so many labels put on me by doctors that refused to look for something other than a sad child who liked chocolate. I needed the diagnosis because I spent decades hating those responsible for my physical and emotional well being. I couldn't put my finger on it... but I never bought what they were saying.

The Cushing's diagnosis gave me the courage to forgive.

The process to get the diagnosis gave me the ability to appreciate and love my body in a way I can't quite explain - though I am going to try later this week. 

Anyway, here's what's next:

I'll have drive by brain surgery through my nose on Friday... then we pray that it is a cure. The surgery is really easy guys - I promise I am going to be ok... I am at one of the best facilities in the world and have one of the top surgeons in the world. He knows this disease inside and out and is going to take good care of me. Yes, please pray for me and for him for the actual surgery... but also keep my family in your prayers... as they are the ones who have to anxiously await the good news. Dad, Kelly, and Sam are here with me... and my sister is back up in WA (worrying no doubt).

Once I return home, I get a new fight on my hands: the "drying out" process (allowing the cortisol soaked tissues to get rid of the excess stored cortisol) and the "waking up" process (where my body starts producing hormones on its own again). They say the cortisol withdrawal is akin to a heroin addict going through withdrawals. Please pray for me. Please come check on me. This process scares me more than anything else.

Then, we rebuild from a place of gratitude. We learn from the process... and we move forward.

I am overwhelmed by the support, prayers, and generosity of those around me. I am overwhelmed at the humility my husband has shown through the whole process (I love you!). I am overwhelmed by the support of my bosses and coworkers - I've never felt more cared about by any other group of women. I am overwhelmed that women I didn't know came to visit me when I first moved back to Seattle and was lonely because no one was coming to see me. I am overwhelmed by the knowledge I've had the privilege of acquiring. I'm overwhelmed by the courage of the women who have gone before me in this fight - the women who took their time to navigate this process and support me every step of the way. I am overwhelmed that you took the time to read this... and mostly, I am overwhelmed that Jesus has been there through it all, going ahead of me, carrying me, and providing what I needed to come out on the other side of this in a much better place than when I went in.

Thank you so much for everything you've done and for the love you've shown to me.

All my love,

Ashley R.

Day 22: Rare Hormone Disorder Brings New Hampshire Woman To OSUMC

A rare, life-altering disease brought a New Hampshire woman to The Ohio State University Medical Center. Her story is stunning and NBC4 takes you inside the rare disease and her cure.

Published: May 02, 2011

By Denise Yost (stories@nbc4i.com)

A rare, life-altering disease brought a New Hampshire woman to The Ohio State University Medical Center.

Concetta Troskie was a young, aspiring actress and model with a love for the stage.

But her picture changed when she was diagnosed with Cushing's Syndrome. It's a rare and mysterious disease that took years to diagnose.

At age 34, Troskie was struck with severe fatigue, anxiety, vertigo and muscle pain, and she could barely speak at times.

"The most challenging one was speaking since I'm such a communicative person and social relationships are so important," Troskie said.

She said she felt like her mind and body were falling apart. In a way, they were.

"Then of course, the physical ones, those are devastating, because your hair starts falling out and you get facial hair and acne and I gained about 70 pounds," she said.

After years of trying to figure out what was going wrong, she got the diagnosis of Cushing's Syndrome, a hormone disorder caused by a benign tumor on her pituitary gland.

"It's just this tiny little piece of disease that is causing so much trouble," said Dr. Daniel Prevedello of The Ohio State University Medical Center.

Dr. Prevedello, a brain surgeon, found a way to remove the tumor through Troskie's nose.

"While we introduce that device through the nose, look at the screen and then we perform the dissection, find the tumor and remove the tumor that way," Dr. Prevedello said.

With no incisions, the surgery meant an easier and faster recovery for Troskie.

"Take it easy and let my body recover on its own time, and acting will come back when I start feeling like I can stand on a stage without falling off it," Troskie said.

Troskie's recovery is not easy. During the next six months, her body will be getting back to normal, but doctors say that within a year, almost all of her symptoms should be reversed, as if she never had Cushing's Syndrome.

~ * ~ * ~ * ~ * ~

You can find original article here: www2.nbc4i.com

Note:  Concetta is the third Cushing's patient that I know of who has had success with Dr. Prevedello. We are all thankful to him for his dedication to our Cushie sisters, and thanks to Concetta for sharing her story for all the world to see!  When we tell our story, we save lives. I truly believe that.

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.

Day 15: Cushie Bloggers Unite to Bring Awareness

As you know, I join a group of Cushing's patients and parents who committed to bringing more awareness to Cushing's by blogging every day throughout the month of April. And guess what?  We are doing it!  Love to see everyone tell their stories and share information.  This disease affects all of us in similar ways, but its path of destruction and sadness takes different turns.  I have been inspired reading their heart-felt posts.

Thanks to MaryO, founder of Cushings-Help.com, for always keeping us organized and motivated. 

To those who may have Cushing's or to those who love a Cushie, I hope you will take a few moments to read our stories. 

 

Alicia http://alliwantisworldpeace.blogspot.com/

Amber http://amber-mulnix.blogspot.com/

Catherine (hypopituitary patient) http://wheniwasyou.wordpress.com/

Christina http://christinapay.blogspot.com/

Cristina (Portugese language) http://cristinagoncalves1973.blogspot.pt/

Cyndie http://mylifewithcushings.blogspot.com/

Daisy Using the comments area on the right sidebar at http://www.cushie.info/blog/

Danielle http://lifewithcushings.blogspot.com/

Dawn http://mrszebra.blogspot.com/

Grace C http://adayinthelifeofatrainwreck.blogspot.com/

Judy K http://judcol.blogspot.com/

Kay http://cushiemama.blogspot.com ‎

MaryO http://www.cushie.info/blog/

MelissaTX-CA http://cushingsmoxie.blogspot.com/

Missaf http://blogforacushiecure.blogspot.com/

Molli http://livingwithstripes.blogspot.com/

Nancy J http://cushielife.multiply.com/

Nicci http://cushiequeen.blogspot.com/

Rene B http://missdiagnosis-rene.blogspot.com/

Robin S survivethejourney.blogspot.com

Sarah C http://sarahsstupiddisease.wordpress.com/

Stephanie M http://fightingforlifeinzebraprint.blogspot.com/

Stephanie Y cushiesteph.blogspot.com

Vanessa http://puremoonlite.blogspot.com/

FAQ YOU: MELISSA'S MAIL BAG

I wanted to share some questions I've received from someone who is embarking on her testing and diagnostic journey. For me, it is good to share the bios of other folks because when we share details, we share ourselves. Melissa, like me, planned a wedding and struggled with the stress and LOOK of the wedding. I bailed but she finished it wmth her big wedding. Even a small piece of life like this can bring your closer to people who are like you, know what you've been through, and are therefore the best ones to take care of you as you get ready for surgery.

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On Jun 21, 2009, at 11:24 P, Melissa wrote:

Hey Melissa,
I wanted to say thank you so much for your help today. It was nice being able to talk with you about things, and I look forward to talking with you tomorrow. I wanted to give you a general time line of my symptoms, etc. just so it will help you know a little more about my situation. It's easier for me to type it out, I get kind of lost with it all when I talk about it sometimes.

I don't know when all of this actually started, if it is Cushings, but when I was a young girl I was always a good weight. Then in forth grade I gained fifty pounds. (Right before I gained the weight I was diagnosed with asthma, and was put on steroid inhalers- at one point I was on four different inhalers. Often had to take steroid asthma breathing treatments at hospital and eventually had to buy the machine for home. Also went on steroids for bronchitis at least twice a year.) I remember too that I had very large eyebrows, etc. and more hair than normal for that age. My hair changed texture as well, going from very straight to very frizzy. I struggled with my weight in middle school and high school. In college I was able to combine exercise with diet and maintained my weight around a size 14. When I did do a diet, like the Atkins it was successful during college . I worked at Banana Republic in college as the window display designer, and so I was very active with my job.

Once in college, went off inhalers since I wasn't at home. Did fine without them, didn't have asthma or problems like I had in high school. Weight was more easily managed.
(Off inhalers 2001-2005)

Here's my recent timeline:

2004- Size 14 and in college, started having some difficulty with concentrating in class, etc. Neck pain and fatigued more.

2005- Gained 60-70 lbs. between 2004-2005. Didn't change eating habits or lifestyle, tried to exercise more and wasn't able to lose weight. Started having mood swings more often, cried a lot. Then in Fall of 2005 started having headaches and dizziness. Almost passed out twice in classes, and had to have people walk me to a car and take me home. Doctors said it was my asthma, and put me back on inhalers (I don't know why headaches and dizziness would be considered asthma related, but I went ahead and took them. - Stopped them again in 2006) Tried Weight Watchers and Curves to lose weight, not successful.

2005-2006- Planned wedding, anxiety increased. Headaches and dizziness increased. So did fatigue and neck and jaw pain. Blurry vision, fatigued, not able to move items on the floor at work. Got married in 2006 (Fall)...had to quit job in November, would get very sick feeling, sometimes unable to get out of bed. Doctors diagnosed neck pain and headaches as "TMJ." Went to two TMJ specialists who fit me with a brace and did pain injections. Nothing helped the headaches, or pain. I was also starting to get times when my heart would race even though I didn't feel anxious. I would get a tingling or energy feeling in my muscles. Even woke up with heart racing sometimes. Heat and cold sensitive. Went to physical therapy on doctors recommendation for neck pain. Didn't help, went for over four months.

2007- Doctors tested for Lymes and MS, both were negative...they treated me for Lymes ("just in case" since I had been in a Lymes area- Wisconsin) with one month of Doxcycline. It didn't help. Daily pain. Daily headaches. Would feel shaky, and was unable to do even small tasks around the house without pain or fatigue. For about six months even blow drying my hair was hard, would get pain and fatigued doing even that. Went to Mayo Clinic, and they diagnosed it all as Myofascial Pain Syndrome and Migraines. Did not respond to migraine medicine. They also diagnosed my frequent heartburn as Gastritis. Took medicine for the heartburn, which was strong and used for ulcers and gastritis...heartburn didn't respond to the medicine after six months. They also tested my heart since it would race periodically, it checked out ok.

Found a counselor and went for a year, to deal with the chronic pain and with the situation (not having a diagnosis that fit or anything that helped). Taught me breathing techniques to help when anxiety happened.

2008- Tried Atkins diet to lose weight, wasn't successful at losing any weight even after four months. (Husband lost 15) Tried a new general doctor, who said Mayo was wrong, that since I had neck and shoulder pain that the headaches weren't migraines..they were tension headaches. Medicine still didn't help. Still fatigued, would stay up late at night. Had been doing that for a few years, where I am unable to go to sleep until 2 or 3 most nights. I will be fatigued all day, and then have more energy at night. Doctors wanted me tested for Pseudotumor Cerebri, had two spinal taps and went to neuro opthamologist. Did not have pseudo tumor. Went back to general doctor who said it was al probably Fibromyalgia and to just forget the pain, dizziness and fatigue. Insulin levels high but glucose ok. Wanted to put me on Metformin. Thyroid functions all ok.

2009- Tried cutting out most sugar to lower insulin instead of Metformin. Insulin levels are now normal. Have cut out most sugar and have not lost weight. I have cut out pop for three years, still have not lost weight. Eat mostly fruits, veggies, lean proteins, and high fiber foods. Get plenty of water. Exercise is hard, but have tried intermittently to exercise consistently over the past three years...painful and get fatigued very easily. Doesn't help me lose weight either. Went to a headache doctor who told me I have Metabolic Syndrome probably (Even though Cholesterol- ok and triglycerides- ok), wanted me to do to Atkins Diet to lose weight and said all my symptoms would just go away if I did the diet. I told him I'd tried it the year before and couldn't lose weight, plus none of my symptoms went away when I did it. He told me to try it anyways. Went back to family doctor who says it is all because I have low vitamin d and I'm overweight. Tells me since I have missed 7 of 12 periods that I probably have PCOS. I have also had pain behind my eyes and an uneasy feeling behind my eyes. Sometimes see floaters and bright spots, not in combination with a headache. I also often see greyish spots in vision. Kind of like there's a fuzzy wall between me and whatever I'm looking at... Lights at night often have a halo around them.

That's just a general time line, but when I went online to look for things with hormones and headaches Cushings came up. I hadn't heard of it. Then I read your blog and Cushings Help and things I didn't even realize were symptoms were listed. I have most of them... The staying up until 2 or 3 am...energy at night. The stretch marks. (Mine go from silver in the morning to really dark pink and purple at night - or range during the month) I have them all over. (Stomach, back, hips, chest, arms, etc.) My face has gotten more round. I have the hump. Actually quite a nice one which I just thought was normal...! :-) My weight is mostly in my stomach. I also have some hair loss...which my mom kept thinking this was all from my thyroid because of that - but my thyroid is fine. (Hair in tub and on floor, have to dust it off after styling hair) I've missed 7 of my last 12 periods. I have more facial hair than I used to...more on lip, etc. darker. I have the problems with concentration, I had to take an incomplete for the first time this semester (I'm in Grad school online through the Savannah College of Art and Design because it was the only way I could continue my education even though I feel this way). I forget what I'm going to say a lot of the time, and I have a very hard time writing papers for school...it's often hard to put information together.

One main thing you wrote is that you got pain going up the stairs. That really clicked for me, because I have a VERY unusually hard time going up stairs. I know I'm overweight but it's not just being out of breath, I get PAIN. I've tried to tell my doctors that and they tell me it's just because I'm overweight by it hurts in my neck and shoulders and head, as well as my legs, etc. Some times it even feels like a "steam pot" in my head, just like it's going to burst from pain. I get that just when I stand up some times too. Even gardening is hard, I get a lot of pain and very fatigued doing small stuff. I even have the muscle weakness, one thing that I've noticed that's really hard is pulling clothes out of the washer. My arms just kind of give out on me doing that.

Anyways,
Sorry if I've typed too much, it's just easier for me to write this all down for you. I get side tracked easily on the phone or talking with people about all of this because it's been so much.

Do you think with my history that's it's a good idea to test for Cushings? I hope I'm on the right track, but things just seemed to match the symptoms to a T. I read stuff on Cushings Help and I'm like "That's me!" It's weird. I am scared to even hope that it's an answer. I've been through so much. It's been hard being newly married and graduating from college...only to have all of this happen. I really appreciate your help, ideas, etc. I hope I can help you in any way as well. Thank you again and I look forward to talking with you tomorrow.

Melissa :-)

********************

My dear sweet Melissa.

I'm not a doctor but I play one on the internet. However, do not substitute my advice for anything that a medically trained professional might give you. Wow. Even for disclaimer purposes, that is difficult for me to say!.

You have done a wonderful thing in capturing your story, your life in writing. You took the time to write it out to me, but you will use this time and time again to tell your Cushing's story to nurses, doctors, surgeons, and future blog readers.

You are on your way to a better health already. You have taken control.

My hunch, like yours, is that you have Cushing's disease. Pituitary Cushing's because of your eye problems and headaches. But interesting to see the mix of synthetic steroids through your time line. Are you on steroids currently? We'll have to see how this plays into things. May have aggravated your pituitary Cushings.

I recommend that you begin to test for Cushing's.
Stage 1: at home or nearby: watch your symptoms and get day time tests done.

Stage 2: travel to Seattle to see a Cushing's specialist for night time testing, which is critical for showing a disruption of diurnal variations.

Do you have good insurance coverage? PPOs create less hassle for the patient, so if possible, switch that over. More expensive, but less hoops to jump. You will find this process is long and difficult anyway. If you can throw a little money at it and make stronger faster better decisions by choosing your own doctors and dropping the need for referrals, then I say do it. We switched from HMO to PPO, and it saved us time. I know it did.

My first recommendation is to call Dr William Ludlam, neuroendocrinologist at the Swedish Hospital, Cherry Hill Campus in Seattle, WA. It may take a few months to get an appointment for Camp Cushie, as he only accepts 3 patients for the week long testing spots. Set the appointment. It is worth it. Traveling there got my my highest highs in midnight cortisol and 4 am ACTHs.

Dr. Ludlam, Bill.Ludlam@swedish.org, 206-320-2800. Email him this time line and tell him of your plans to try local testing before you come out there.

I suggest making a second appointment with a more local doctor in hopes that this doctor will begin ordering some basic Cushing's tests. This will be particularly helpful in catching tests during the day. Then you go on to Ludlam and the Swedish for night time tests, since few facilities and hospitals are set up to accommodate that intensive schedule of blood draws. That office manages that process very well.

When I went to see Dr Ludlam, I went after I had initially seen a local endo. I did not get any high results from day time testing with local yokle. So, I travelled without any high results on Cushings tests. I traveled there with hope and instinct on my side. I got my highs there (4 am ACTH because tumor fires off at that time for most Cushies, they don't know why; and midnight cortisol blood and salivary).
On the plane ride home--after I got my medical records--I couldn't stop smiling.

Set appt with other recommended endocrinologist. He can order cortisol labwork (cortisol blood draws at 8 am and 4 pm on same day). Cortisol is highest at 8 am to wake you up, 4 pm cortisol is roughly half of 8 am, then cortisol levels at midnight--tested in saliva or blood serum--should be 0. Any abnormality in this pattern (also known as circadian rhythm or diurnal variation--look it up) indicates a flaw in the feedback loop of the hypothalamus-pituiatry-adrenal axis, or HPA. This means CUSHINGS.

Always make sure they do cortisol blood draws and ACTH plasma draws at the same time. You need both at each drawing. Then, make sure they process the ACTH according to specifications: click here to learn about all tests

Even if you don't know it all, learn the language. Doctors refute you less if you are knowledgable and speak their language. Read the medical literature. Discuss it with a Cushie friend. You must be able to present your case to doctors who have many other patients to see. It's your one shot to get the right information to them.

A short note about me, I think I've had a milder course of Cushing's since I was 11. That's 25 years. I plan to update my timeline going further back with photos, etc.

So, Melssa and any other newbies reading this. Here are my suggestions based on what worked for me. If you decide to travel to Seattle, there is other info I can post here about where to day for cheap (in the hospital itself--like YMCA) and how to get your records before you leave, etc. I can help, and I want to help. I hope to be online more, so my plan is to answer each of these requests as they come in. Be patient with me because my dear little Elena wants me all the time, and sometime I can entertain her in other ways... but just for short bursts of time.

OK. Sleeping meds are really fully working. Better reread this in the morning to see if I made since! Thank you Ambian 10 mg!