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.

RIP Janet

Rest in peace, dear Janet.

My heart breaks for Jennie, Janet, and their entire family. I am sorry for your loss, and I am sorry that the medical community failed your family.

Thank you Jennie, for sharing this story. In your honor and hers, I will share this story here on my blog, in hopes of saving someone's life.

The Cushing's community *must* continue to generate awareness for this devastating disease, and we must lead the medical community by example.

No life should be lost to this preventable disease. ~mm

Jennie Whitehead Brick wrote:

My sister, Janet Whitehead Mitchell, died Sept. 16, 2010 of Cushing's Disease. The autopsy revealed that she had cancer of the pituitary gland. She is only the 140th person in medical literature to have cancer of the pituitary gland. She was 59 years old. She had many of the symptoms of Cushing's for a few years, but ...was diagnosed just a few days before her death. I will do what I can to spread the word about Cushing's in the hope that someone else will get diagnosed earlier on in their fight with the disease.

Click here and scroll down to see Janet's high school photo and click here to see the photo from her obituary.

Collection of Cancerous Brains Helps Show Neurosurgery’s Rise

Super New York Times article about Dr. Harvey Cushing's collection of brains in jars, now housed in the Cushing Center at Yale. Homage to him as father of modern neurosurgery. Center has visiting hours! Be sure to check out the slide show:

Dr. Harvey Cushing, one of America's first neurosurgeons, kept extensive samples of his work, but many of the details have been lost. The brains and photos that are on exhibit at the Cushing Center at Yale University are believed to have been made as part of the patients' medical records. The collection includes photos taken of patients before and after operations, tumor specimens, and microscope images. In total, there are almost 10,000 glass plate negatives of patients treated by Dr. Harvey Cushing between 1902 and 1933.

Credit: The Harvey Cushing Brain Tumor Registry, Cushing/Whitney Medical Library

Collection of Cancerous Brains Help Show Neurosurgery's Rise

August 23, 2010
Inside Neurosurgery’s Rise
By RANDI HUTTER EPSTEIN, M.D.

NEW HAVEN — Two floors below the main level of Yale’s medical school library is a room full of brains. No, not the students. These brains, more than 500 of them, are in glass jars. They are part of an extraordinary collection that might never have come to light if not for a curious medical student and an encouraging and persistent doctor.

The cancerous brains were collected by Dr. Harvey Cushing, who was one of America’s first neurosurgeons. They were donated to Yale on his death in 1939 — along with meticulous medical records, before-and-after photographs of patients, and anatomical illustrations. (Dr. Cushing was also an accomplished artist.) His belongings, a treasure trove of medical history, became a jumble of cracked jars and dusty records shoved in various crannies at the hospital and medical school.

Until now. In June 2010, after a colossal effort to clean and organize the material — 500 of 650 jars have been restored — the brains found their final resting place behind glass cases around the perimeter of the Cushing Center, a room designed solely for them.

These chunks of brains floating in formaldehyde bring to life a dramatic chapter in American medical history. They exemplify the rise of neurosurgery and the evolution of 20th-century American medicine — from a slipshod trial-and-error trade to a prominent, highly organized profession.

These patients had operations during the early days of brain surgery, when doctors had no imaging tools to locate a tumor or proper lighting to illuminate the surgical field; when anesthesia was rudimentary and sometimes not used at all; when antibiotics did not exist to fend off potential infections. Some patients survived the procedure — more often if Dr. Cushing was by their side.

Most of the jars contain a single brain; a few hold slices of brains from several patients. Some postoperative photographs next to the jars show patients with tumors bulging from their heads. When Dr. Cushing could not remove a tumor, he would remove a piece of the skull so the tumor would grow outward rather than compress the brain. It was not a cure, but it relieved the patient of many symptoms.

Dr. Cushing, born in Cleveland in 1869, was an undergraduate at Yale and finished his career here as a professor of history of medicine. In between, he went to Harvard for medical school, did his early surgical training at Johns Hopkins and became a surgical professor there, and then spent most of his career as chief of neurosurgery, a new specialty, at Peter Bent Brigham Hospital at Harvard (now Brigham and Women’s).

When he began operating in the late 19th century, a few other doctors were also venturing into the brain, but for the most part the patients did not survive the procedure.

“In the first decade of the 20th century, Harvey Cushing became the father of effective neurosurgery,” the medical historian Michael Bliss wrote in “Harvey Cushing: A Life in Surgery” (Oxford, 2005). “Ineffective neurosurgery had many fathers.

“Cushing became the first surgeon in history who could open what he referred to as ‘the closed box’ of the skull of living patients with a reasonable certainty that his operations would do more good than harm.”

Sometimes doctors went into the brain and could not find the tumor. Sometimes they talked to patients during surgery. Dr. Cushing, for one, often used only the local anesthetic Novocain. (The brain itself does not have pain receptors, but having one’s skull cut open must have been agonizing.) Mr. Bliss writes that in 1910, midway through a 10-hour operation on the renowned physician and Army Gen. Leonard Wood, Cushing wanted to stop operating and continue another day, but General Wood — fully alert — begged him to continue.

Dr. Dennis Spencer, the chairman of neurosurgery at Yale and the Harvey and Kate Cushing professor of neurosurgery, said Dr. Cushing’s major accomplishment was “his meticulous operative technique.”

“Whatever approach he was going to use to get to a tumor,” Dr. Spencer said, “he had this incredibly good judgment in terms of where the tumor was, getting there without harming the brain and then getting out.”

Brain surgeons in those days were medical sleuths, relying largely on patients’ accounts of their symptoms to figure out where the tumor was. Dr. Cushing popularized an eye exam that took advantage of the specific ways in which different tumors can distort vision — a strategy used into the 1970s, when M.R.I.’s and other imaging tools replaced it. Even today, many tumors in the pituitary gland, which straddles the optic nerves, are initially detected because patients have trouble seeing.

Dr. Cushing also discovered that pituitary tumors could lead to vast changes in the body. Cushing’s disease and Cushing’s syndrome — two illnesses linked to hormones gone awry — are named for his discoveries.

Indeed, comparatively little progress has been made since Dr. Cushing’s time in actually prolonging life in brain-cancer patients. “It is fascinating how far we’ve come in terms of technology but not really in terms of progress for most malignancies,” Dr. Spencer said. “Everything we’ve done in the last 100 years has changed the progress for malignant brain tumors very little, extending life maybe eight months to two years.”

He added, though, that “in many tumors we are getting closer to the genetic understanding, and I’m optimistic in the next 10 years we will make a lot more progress.”

In addition to his medical achievements, Dr. Cushing won a Pulitzer Prize in 1928 for his biography of his mentor, Dr. William Osler. He devoted his life to his work, leaving little time to his five children. His three daughters gained notoriety for their marriages — one to James Roosevelt, a son of President Franklin D. Roosevelt, whom she divorced, later marrying the publishing plutocrat John Hay Whitney; one to William Vincent Astor, heir to a $200 million fortune, whom she divorced, later marrying the painter James Whitney Fosburgh; and the youngest to the Standard Oil heir Stanley Mortimer Jr., whom she divorced, later marrying the CBS founder William S. Paley.

The collection expanded while he moved from Johns Hopkins to Harvard and eventually Yale, where they ended up in dusty storage bins before their recent $1.4 million restoration, partly paid for by money from a former patient’s family. The brains and their records were a “complete mess,” recalled Dr. Gil Solitaire, a professor of neuropathology at Yale in the 1960s who once shared an office with some of the Cushing paraphernalia. “Some were totally dehydrated, and the jars were cracked.”

In 1979, the specimens were moved from the bowels of the hospital to the basement of the medical school’s dorms. It was there that the students in the 1990s started a Brain Society — with membership extended to anyone who had the nerve to sneak into the dank basement, walk through the cluttered hall of brains and sign a poster, which now hangs in the Cushing Center.

“It was a rite of passage,” said Dr. Tara Bruce, now an obstetrician-gynecologist in Houston, who became a society member during her first year of medical school in 1994. “Everyone went to see the brains. It was surreal. I had just got to Yale and I remember thinking, ‘I guess Yale has so much great stuff that they can just shove a bunch of brains in the basement.’ ”

Dr. Christopher J. Wahl, an assistant professor of orthopedics and sports medicine at the University of Washington, wrote his thesis about the brains when he was a Yale medical student, stirring an interest in the restoration.
“The most incredible thing is that it’s not just the physical documentation of the founding days of neurosurgery but a social document,” Dr. Wahl said. “The bravery of these patients that really had nowhere to turn and this guy who was — cowboy is the wrong word, but an incredible innovator who was doing things at the right time and place.”

The Cushing collection in the Cushing/Whitney Medical Library at Yale University at 333 Cedar Street, New Haven, is open to the public Monday through Friday, 8 a.m. to 8 p.m.; Saturday, 10 a.m. to 8 p.m.; and Sunday, 9:30 a.m. to 8 p.m. (203) 785-5352.

Apathy and Pituitary Disease: It Has Nothing to Do With Depression

For the regular readers of this blog, you know that I may be more bothered by my languishing mental acuity than changes to my body. As my previous two posts show, my body has faced significant changes. Truthfully, I am bothered by both, rightly so.

I want to share a medical article Susan posted today. She is an active member of the message boards. We frequently share peer-reviewed medical literature, always in an attempt to understand our disease better. These "Cushies" know more about Cushing's than many, MANY endocrinologists.

I encourage you to click through and read the article below. I will excerpt a few passages here.

Apathy and Pituitary Disease: It Has Nothing to Do With Depression.
J Neuropsychiatry Clin Neurosci 17:159-166, May 2005. Michael A. Weitzner, M.D., Steven Kanfer, M.D. and Margaret Booth-Jones, Ph.D. Tampa, Florida. © 2005 American Psychiatric Press, Inc.

ABSTRACT

Increasingly, patients with pituitary disease are evaluated and treated at cancer centers. In many ways, these patients resemble patients with other malignant brain tumors. Although the majority of pituitary adenomas are benign, the physical, emotional, and cognitive changes that these patients experience on their well-being is malignant. Pituitary disease causes a variety of physical illnesses resulting from the alterations in the hypothalamic-pituitary-end organ axis. In addition, patients with pituitary diseases may experience many emotional problems, including depression, anxiety, behavioral disturbances, and personality changes, above and beyond the many reactions these patients may have to the myriad of adjustments that they must make in their lives. There is a growing understanding that pituitary patients may experience these emotional problems as a result of long-term effects that the pituitary tumor itself, treatment, and/or hormonal changes have on the hypothalamic-pituitary-end organ axis. The authors present a series of cases, in which patients with pituitary disease were diagnosed and treated for depression and showed little response to the treatment for depression. When the diagnosis of apathy syndrome was considered and treatment implemented, the patients’ condition improved. A review of the literature on apathy, hypothalamic-pituitary-end organ axis dysfunction, and treatment for apathy syndrome is included.

CASE SERIES

Case 4 (BLOGGER NOTE: This is totally me! I moved it to the top spot because this is a "cushie.")
Ms. D is a 36-year-old married Anglo woman, employed as a nurse, diagnosed with an ACTH-producing pituitary microadenoma in 1992. She was treated surgically following a brief period of hormone deficiency. At the time of her psychiatric assessment, however, she had regained full hormonal function. Ms. D reported that since regaining her hormonal function she noticed some "dragginess." She reported there were times when she did not feel very motivated, and she thought that it took much more energy for her to do her normal activities. She reported that when she would take pseudoephedrine for sinus problems, she would see things "with more clarity" and that she would be able to be more focused in her attention and her ability to complete her tasks. Otherwise she tended to procrastinate and get distracted from various tasks.

Case 1
Mr. A is a 48 year-old Anglo lawyer and architect, diagnosed with a pituitary adenoma (clinically nonfunctioning) and treated with a transsphenoidal resection in 1997. He first noted memory problems in 1991 that worsened over the years, causing problems such as concentration and focused attention. He reported problems such as getting lost in familiar places and forgetting the names of people he had known for many years. He believed his thinking process was slow and he was "not as quick on the uptake" as before. He reported that he had an excellent memory, never having to use a reminder book of any kind prior to these symptoms.

Case 2
Ms. B is a 55-year-old Anglo homemaker with a history of a prolactinoma, diagnosed 15 years before her psychiatric evaluation. She reported that her symptoms of the tumor were primarily mood swings, headache, and loss of menstrual periods. She underwent surgery followed by radiation therapy, ultimately developing panhypopituitarism. Since then, she has been managed on hormone replacement, but she began to notice short-term memory difficulties. She reported difficulty finding the right words to express her thoughts. She also noticed difficulty in concentration and focused attention. She reported occasional fatigue and depressed feelings. She reported intermittent suicidal thoughts when she reported the depressed mood, but no active plans of suicide were reported during those times.

Case 3
Ms C. is a 47-year-old Anglo woman, employed as a management supervisor and diagnosed with a pituitary macroadenoma (clinically nonfunctioning) in 1994. She underwent transfrontal surgical resection and did not receive any postoperative radiation treatment but did develop panhypopituitarism. Since 1996, several changes in her behavior and personality were noted. Prior to the tumor she was a very active person. She was able to do very well at work and maintain a leadership position. She could do multiple tasks at once and received a lot of satisfaction from her work. However, after her surgery and recovery, she noticed that she was no longer able to multitask. She was deriving less satisfaction from her work and experienced transient periods of sadness. However, she was most concerned about her lack of energy and motivation. When she was able to work, she had to organize her activities very thoroughly and continuously write down everything in order not to forget what her tasks were. It took a lot of mental energy to function, and after work she would often need to take a 2-hour nap when she returned home. She showed no motivation to adequately take care of her home, including normal household chores. She reported she was not able to muster up much enthusiasm to interact with her grandchild because she was concerned about her energy and drive.

OH YEAH: There was one other time I felt skinny

Cushing's and its related hormonal imbalances have led me to gain 100 pounds in about 5 years. That's difficult on a self-esteem. Recently, I liked what I saw in the mirror.

Boston, Massachusetts, May 2010

 

 

Austin, TX, July 2010

 

 

WANNA LOOK LITTLE: Get next to something bigger!

Some days, I don't care. I am going to do something fun. When I saw this hippo in a small Texas town, I knew the hippo people put those steps there for a reason. I tell you what... I've never felt skinnier!

 

Tell me all about yourself

Hi there. Soooo much has happened, and I am really late getting all of it posted here. In the meantime, I found something I wrote back in 2007 on the Cushing's message boards. Sadly, I feel the same way today. Maybe soon, I'll start to feel better.

It is difficult to see your body change when you are doing nothing to provoke it.
It is difficult to see your body betray you.
It is difficult to admit that your body is no longer your own.

So, while I'm getting my ducks in a row to update and share lots of good Cushing's info, maybe you can tell me more about YOU. Who are you, and why do you follow me on this blog?

I would love to have some guest moxie posters. Email me at moxiemelissa at symbol gmail.com, and tell me your story. I would love to post it here to share with others. If that is okay, please be sure to let me know in your email.

Have a good weekend.
Melissa

Pay No Attention to the Girl Behind the Smile

I thank Christine for highlighting the struggle folks with chronic diseases face each day. Frankly, it's why I choose to stay home most of the time.

Pay no attention to the girl behind the smile (full article).
Article written by Christine Miserandino, © butyoudontlooksick.com


What can I say, It is the “secret society of the sick” and I am proud--but not lucky to be a--member.

I hate having to defend that I am a good mother, wife, daughter, sister, or friend.

It is a dizzying, exhausting dance to be two different people. I guess I have grown up a bit. I quite simply do not have the desire to act anymore for you. This is who I am. Good days and bad. Sometimes, there will be days where I am the funny, cute girl that you just can’t believe is sick. Then another day or week later- I may be that really sick girl who used to be funny. It’s all when you catch me.

I am doing my best.

There are so many things I wish people knew about me but I won’t say, because you don’t ask; and when you do, you’re not truly listening.

Pay no attention to the girl behind the smile.

AFTER CUSHING'S: Wish and Do List

I have become so discouraged lately. I am really at my wit's end. No tumor on my 3T pituitary MRI this past Tuesday. Biochemical evidence is still equivocal, docs say, "not high High HIGH enough," I say. I am so depressed. I just keep thinking of all the things that I am missing by being sick.

If there is one GOOD thing about having a chronic disease that makes you as hopeless as Cushing's does, it is that I have had lots and lots of time to sit and wish and wonder.

SIT because my weak leg muscles, caused by documented adult growth hormone deficiency, keeps me from walking or running or many other activites.Shoot, I can't even stand in my own air conditioned kitchen for longer than 10 minutes at a time. That's sad.

WISH for a change so that I won't be trapped in a broken body that doesn't match my vibrant spirit.

WONDER when I will ever get to do what *I* want to do again, do the things that make me *me*, and wonder, if given that chance, what would I want to do.

I know me, and when I am down in the dumps, I really need to focus on something positive. Not just teensy weensy positive. Big mama gargantuan monolith o' positive.

I decided to share things as I think of them, things that I hope to do once my bod is both physically and mentally ready to do them. I hope that day is soon. For you, I hope you can find it in yourself to galvanize your wants and dreams, and even with this awful disease, feel like they are still close enough to reach out and touch them.

You see, I have a love for language, cultures, and photography. Cushing's disease has kept me grounded for the last 10 years, and I am just itching to get back out in the world--to explore and to live. Who wants to go with me? ~mm

National Geography Expeditions' Photography Workshops and Expeditions

For more than a century, people have thumbed through the pages of our magazines and felt inspired by some of the best photography in the world. Now we’d like to invite you to travel to incredible places with some of the best photographers in the world. Our Photography Expeditions are designed for photographers of all levels. You’ll learn tips and techniques while exploring fascinating places with one of our renowned photographers. Our Photography Workshops, also led by a top National Geographic photographer, cater to those who seek more intensive instruction, and build photo editing, instruction, and critique sessions as well as photo assignments into each day’s schedule.

Doesn't this sound awesome?!

Another thing that makes me happy is thinking about travel. I love all the possibility, the expectation, the wonder. I love it all. Rick Steves' Travel Philosophy captures it better than I could ever say it. The intensity of travel: I love it, and I need it.

Rick's Travel Philosophy (excerpt)

Travel is freedom... one of the last great sources of legal adventure. Travel is intensified living with maximum thrills per minute. It's recess, and we need it.

Extroverts have more fun. If your trip is low on magic moments, kick yourself and make things happen. If you don't enjoy a place, maybe you don't know enough about it. Seek the truth. Recognize tourist traps. Give a culture the benefit of your open mind. See things as different but not better or worse. Any culture has much to share.

Of course, travel, like the world, is a series of hills and valleys. Be fanatically positive and militantly optimistic. If something's not to your liking, change your liking. Travel is addicting. It can make you a happier American, as well as a citizen of the world. Our Earth is home to nearly 6 billion equally important people. It's humbling to travel and find that people don't envy Americans. Europeans like us, but with all due respect, they wouldn't trade passports.

Globetrotting destroys ethnocentricity. It helps you understand and appreciate different cultures. Travel changes people. It broadens perspectives and teaches new ways to measure quality of life. Many travelers toss aside their hometown blinders. Their prized souvenirs are the strands of different cultures they decide to knit into their own character. The world is a cultural yarn shop. Back Door Travelers are weaving the ultimate tapestry.

Irreversible Effects of Previous Cortisol Excess on Cognitive Functions in Cushing’s Disease

I am thankful to have found Laika's MedLibLog: A medical librarians exploration of the web 2.0 world and beyond.

I find this April 2010 article very troubling. In fact, as a lifetime straight A student, president of my high school honor society, magna cum laude college graduate, it may be more than troubling. It is devastatingly sad, because--from what other Cushing's patients tell me--it may indeed be true. ~mm

Irreversible Effects of Previous Cortisol Excess on Cognitive Functions in Cushing’s Disease (click here for full article)

Symptoms of Cushing’s disease are related to the effects of high levels of cortisol or other glucocorticoids on the immune system, the metabolism and the brain. Symptoms include rapid weight gain, particularly of the trunk and face (central obesity, “moon face” and buffalo neck), thinning of the skin and easy bruising, excessive hair growth, opportunistic infections, osteoporosis and high blood pressure.

Less emphasized than the clinical features are the often very disabling cognitive deficits and emotional symptoms that accompany Cushing’s disease. Cushing patients may suffer from various psychological disturbances, like insomnia, mood swings, depression and manic depression, and from cognitive decline. Several studies have shown that these glucocorticoid induced changes are accompanied by atrophy of the brain, and in particular of the hippocampal region, leading to hippocampal volume loss and a profound loss of synapses [2]. This hippocampal loss seems reversible [2], but are neurological and psychological defects also restored? This is far more important to the patient than anatomic changes.

If we listen to Cushing patients, who are “cured” and have traded Cushing’s disease for Addison’s disease, we notice that they feel better after their high levels of cortisol have normalized, but not fully cured (see two examples of ex-Cushing patients with longlasting if not irreversible health) problems in my previous post here. [added 2010-04-17)

Korlym: New Medication in Clinical Trials to treat Cushing's

Wouldn't this be interesting if this could really help some people. ~m


Corcept Therapeutics Nears Completion of Enrollment in Phase 3 Cushing's Syndrome Study -- Data Announcement Anticipated by Year End

MENLO PARK, CA, Jun 25, 2010
(MARKETWIRE via COMTEX) --

Corcept Therapeutics Incorporated ("Corcept"), a pharmaceutical company engaged in the discovery and development of drugs for the treatment of severe metabolic and psychiatric disorders, today announced that it had enrolled 49 of the planned 50 patients in its Phase 3 trial of CORLUX(R) for the treatment of Cushing's Syndrome and expects the fiftieth patient to begin dosing next week.

"We are near our target of dosing 50 patients in our Phase 3 study of CORLUX for the treatment of Cushing's Syndrome. We remain on track to announce top line results from the trial by the end of this year," said Joseph Belanoff, M.D., Chief Executive Officer of Corcept.

Cushing's Syndrome Phase 3 Trial Nears Completion of Planned Enrollment of 50 Patients

We have dosed 49 of the planned 50 patients in our open-label Phase 3 trial of CORLUX in patients with endogenous Cushing's Syndrome, which is being conducted at 20 leading medical facilities throughout the United States. The final patient is expected to be dosed next week.

The FDA has indicated that this single 50-patient open-label Phase 3 study of CORLUX may provide a reasonable basis for the submission of a New Drug Application ("NDA") for Cushing's Syndrome. In the study, each patient's dose is titrated to clinical benefit by their study investigator and the primary endpoints (either an improvement in glucose tolerance or blood pressure) are measured at the end of 24 weeks.

We expect to announce the top-line results of this study by the end of 2010 and to submit our NDA to the FDA in the first quarter of 2011.

About Cushing's Syndrome

Endogenous Cushing's Syndrome is caused by prolonged exposure of the body's tissues to high levels of the hormone cortisol due to either cortisol or adrenocorticotropic hormone (ACTH) production by tumors. Cushing's Syndrome is an orphan indication which most commonly affects adults aged 20 to 50. An estimated 10 to 15 of every one million people are newly diagnosed with this syndrome each year, resulting in over 3,000 new patients in the United States. An estimated 20,000 patients in the United States have Cushing's Syndrome. Symptoms vary, but most people have one or more of the following manifestations: high blood sugar, diabetes, high blood pressure, upper body obesity, rounded face, increased fat around the neck, thinning arms and legs, severe fatigue and weak muscles. Irritability, anxiety, cognitive disturbances and depression are also common. Cushing's Syndrome can affect every organ system in the body and can be lethal if not treated effectively.

About CORLUX

Corcept's first-generation compound, CORLUX, also known as mifepristone, directly blocks the cortisol (GR-II) receptor and the progesterone (PR) receptor. Intellectual property protection is in place to protect important methods of use for CORLUX. Corcept retains worldwide rights to its intellectual property related to CORLUX.

About Corcept Therapeutics Incorporated

Corcept is a pharmaceutical company engaged in the discovery and development of drugs for the treatment of severe metabolic and psychiatric disorders. The company has two ongoing Phase 3 programs: CORLUX for the treatment of Cushing's Syndrome, and CORLUX for the treatment of the psychotic features of psychotic depression. Corcept also has a Phase 1 program for CORT 108297, a selective cortisol receptor antagonist. Corcept has developed an extensive intellectual property portfolio that covers the use of GR-II antagonists in the treatment of a wide variety of psychiatric and metabolic disorders, including the prevention of weight gain caused by the use of antipsychotic medication, as well as composition of matter patents for our selective GR-II antagonists.

CONTACT:
Caroline Loewy
Chief Financial Officer
Corcept Therapeutics
650-688-8783

SOURCE: Corcept Therapeutics

Original Marketwire article

Scott Hamilton: Pituitary Patient & Advocate

Ice Skater Scott Hamilton Undergoes Brain Surgery, People.com

Olympic champ Scott Hamilton underwent brain surgery Wednesday to remove the recurrence of a benign tumor near his pituitary gland, which first appeared in 2004. "They're happy with the progress of the entry process, and now [doctors] can begin to get rid of the tumor," the figure skater's rep, Michelle Thornbury, tells PEOPLE of the procedure, which was completed late Wednesday.

Hamilton, 51, had the surgery in Boston, where he is surrounded by family, including his wife Tracie, their friends and his brother Steve. "They're all feeling the love coming from all of us," the rep says. After the surgery was complete, Hamilton's rep told PEOPLE, "Scott is resting comfortably and expected to make a full recovery. He and his family are so thankful to the doctors and surgical team for taking such good care of him and grateful to everyone for their thoughts and prayers."

He will remain in ICU for a couple days and is expected to return home next week.

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Scott Hamilton undergoes surgery for recurrent brain tumor, CelebrityDiagnosis.com

Craniopharyngiomas are tumors derived from pituitary gland tissues, and typically form in area above the pituitary gland. It is most common in children between 5 to 10 years old, and again in individuals over 50. It is fairly uncommon, only occurring in 2 per 100,000 people.

Craniopharyngioma causes symptoms in one of three ways:

1. Increasing the pressure on the brain (increased intracranial pressure). This causes symptoms of headache, nausea and vomiting, and decreased balance.

2. Disrupting the function of the pituitary gland. This leads to hormone imbalances which can cause growth failure and delayed puberty in children, loss of normal menstrual function or sex drive, increased sensitivity to cold,fatigue, constipation, dry skin, nausea, low blood pressure, and depression. Pituitary stalk compression can lead to diabetes insipidus(DI)- causing increased thirst and urination, and may increase prolactin levels- causing a milky discharge from the breast(galactorhea).

3. Damaging the optic nerve causing visual disturbances, and even blindness.

Treatment of craniopharyngioma is either surgical or with radiation, depending on the size and location of the tumor.

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Not Again: First, Scott Hamilton Fought Off Cancer. Now the Popular Skater Is Battling a Rare Brain Tumor, People.com, March 2005

Now Hamilton, 46, must battle craniopharyngioma, a rare, noncancerous tumor near his pituitary gland that, if left untreated, could leave him blind.

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Scott is a member and advocate for the Pituitary Network Association. He appears in a short but important video on the PNA website.

Heavy health burden: Fat but not my fault

The lovely and lively Sharmyn McGraw is the founder of Hormones411.com and an omnipresent Cushing's activist.

Sharmyn's winding path to diagnosis was chronicled on the Discovery Health program Mystery Diagnosis (click to see full segment).

This past week, Sharmyn was featured in an MSNBC.com article entitled Weight gain from illness, medication spurs sudden shame.

I want to thank Sharmyn for her persistence in getting the word out there about Cushing's. Every time she shares her own journey, Sharmyn educates the public and saves sufferers. One person at a time. Thanks for all you do, Sharmyn!

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Weight gain from illness, medication spurs sudden shame

by Joan Raymond and Jim Seida, MSNBC contributors; updated 6/23/2010


Sharmyn McGraw knows what it’s like to have a body that people envy. For most of her adult life, the 5-foot, 4-inch former flight attendant was a lean size 2. No more. McGraw, 48, now weighs 189 pounds, down from a one-time high of 250 pounds.

It’s not like McGraw stuffed her face with super-size-me burgers and fries. She’s sick. In 2000, she was diagnosed with a rare condition called Cushing’s disease, caused by a benign pituitary tumor. One of the hallmarks of Cushing’s is massive weight gain, particularly in the trunk, face and back.

Though surgery to remove the tumor was successful, McGraw still suffers with severe hormonal imbalances, making weight loss and weight maintenance difficult. And it’s those extra pounds — or more accurately, people’s perception of those extra pounds, she says — that can be as tough to deal with as any disease or treatment that causes weight gain.

McGraw knows all about indignities. She got dumped by a personal trainer after she couldn’t shed pounds fast enough. A doctor told her she could lose weight if she was locked in a closet for a week with only water to drink. Even well-meaning friends could be annoying as they told her about the latest-greatest diet.

'Fat is fat'
“I know how people look at me now, and how people looked at me when I was fit,” says McGraw, who runs a pituitary and brain tumor patient support group in Santa Monica, Calif. “The bias out there against heavy people is incredible. Having an illness doesn’t matter. In people’s eyes, fat is fat.”

In a society that value’s thinness, McGraw’s dilemma isn’t unusual. Weight bias is rampant, although women seem to experience it at lower weights. Though folks who have gained weight due to medical conditions or by taking prescribed medications like steroids that can cause weight gain are only a small fraction of the overweight and obese, they too feel the anti-fat scorn.

“You would think that illness would be somewhat protective (against bias),” says obesity researcher Marlene Schwartz, deputy director of The Rudd Center for Food Policy and Obesity at Yale University. “But (as a society) we like to assign fault. We think it’s so easy to be healthy, and therefore, not fat.”

Because obesity and all of its co-morbidities like heart disease, stroke, diabetes, some cancers, and asthma, to name a few, rack up big health care bills (according to a 2009 CDC study, America now spends as much as $147 billion annually on the direct and indirect costs of obesity) some researchers fear this bias might get worse as health care reform plays out.

“There is some evidence that shows that for whatever reason weight bias is increasing,” says obesity researcher Robert Carels of Bowling Green University in Ohio. His own research published in the journal Eating and Weight Disorders shows a “strong level of contempt” for the obese, especially among people who believe the weight is highly controllable. “There’s a feeling of why should I have to pay for them (the obese), if they can do something about their weight,” says Carels. “As a society we have a strong, pull-yourself-up-by-the-bootstrap mentality, and the overweight are the targets.”

You don’t have to tell that to Nellie Sabin, 56, of Cape Cod, Mass. About 15 years ago, Sabin developed severe migraines, which her doctor treated with a long-term course of steroids. Unfortunately, the steroids produced a massive weight gain of 100 pounds and rebound headaches that lasted about five days.

“I was a complete mess,” says Sabin, a book editor and writer. “I thought I was going to die.” The long-term steroid treatment caused Sabin to develop a hormone disturbance and she also developed severe arthritis in her back, making it difficult to exercise. “Unless you have experienced it, you can't imagine the prejudice and shame associated with being fat, even if it isn't your fault,” says the 5-foot, 10-inch Sabin, who once weighed 155 pounds but now weighs more than 300 pounds.

The good news is that Sabin has the full support of her husband and children. The bad news is that it’s tough to get respect from other people. “Everyone assumes I’m fat because I eat Snickers bars for breakfast. They also assume I’m stupid and have no willpower,” says Sabin. “At this point I would rather not have to meet people than have to explain I’m not a moron and I’m fat for medical reasons.”


Ashamed of own prejudice
Liz Gabor of Cleveland, Ohio, used to be one of those people that thought the obese were an easy target for loathing. That is until she became a self-described “fat girl,” after gaining 60 pounds in about 18 months despite eating well and exercising. The diagnosis: insulin resistance.

“I thought that was a disease that couch potatoes got, so I was embarrassed about everything, and it didn’t help that people looked at me and thought I was bingeing on chips and ice cream all night,” says Gabor, whose weight jumped from 125 pounds to 185 pounds.

Before developing a rare condition called Cushing's disease, Sharmyn McGraw, seen in 1990, was 5-feet, 4-inches and 120 pounds.

She is now taking medication to better help her body respond to insulin and to help her lose weight.

Gabor believes her “time of fatness,” is payback for her years of judging the obese. “I think weight gain, no matter what the cause, can be really complex for some people. But I think I’m even more embarrassed about the way I thought about obesity. It’s very shameful.”

That’s not to say that Gabor, McGraw and Sabin are at peace with their bodies. They want the pounds gone. And the sooner, the better. In the interim though, they are just trying to get through the day.

“I think society makes it tough for everyone to accept the way they look,” says McGraw. “When I was a size 2, I probably thought I could have had a better body. My gosh, that’s really kind of funny now.”

Joan Raymond is a freelance journalist whose work has appeared in Newsweek, the New York Times, MORE and Woman's Day.

© 2010 msnbc.com

What You Must Know about Adrenal Crisis

I just found this page of VERY IMPORTANT information about adrenal crisis that Cushing's patients often face, either after pituitary surgery or after their adrenal glands are removed in a procedure called bilateral adrenalectomy, or BLA.

I am thankful to MaryO, the founder of Cushing's Help & Support.com and Cushie.com

This adrenal crisis page is a very informative for the patient, the caretakers, and emergency medical folks.  Many Cushies print this information and carry it along with their hydrocortisone and Solu-cortef (actovial) meds. They post the information on their refrigerators.

Be sure to read patient stories such as mom Jackie and daughter Sam's situation that went very, very wrong in Robin's post, Stars Go Blue. It brings tears to my eyes every time I read it.

This graphic from Sue explains it all, in a nutshell:

Did You Know You Have a Bill of Rights as a Patient?

 I encourage all of you to join and/or donate money to the Pituitary Network Association.  The serious tone is appreciated, and I always felt like they were on the patients' side.  Today, I want to share the PNA's Patients' Bill of Rights.  This disease beats down the patient, and sometimes, we forget what rights we have or should have.  Let this serve as a reminder on your journey to better health. Thanks to the PNA for all that they do.

~Melissa (emphasis below mine)

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Patients bill of rights

Preamble

The Pituitary Network Association (PNA) is an international non-profit organization for patients with pituitary tumors and disorders, their families, loved ones, and the physicians and health care providers who treat them. PNA was founded in 1992 by a group of acromegalic patients in order to communicate and share their experiences and concerns. PNA has rapidly grown to become the world's largest and fastest growing patient advocacy organization devoted to the treatment and cure of pituitary disorders.

PNA is supported by an international network of the world's finest physicians and surgeons. Our goal is to reach every patient who may be forgotten, abandoned, or worse yet, undiagnosed after many years of suffering. We are doing this in three ways: (1) By providing public awareness programs and educational seminars, (2) By assisting the medical community in developing uniform standards for early diagnosis, surgery, radiation, pharmacological treatment and follow-up, and (3) by having interactive Web sites and referral program on these Web sites.

Our Rights

• Pituitary diseases, tumors and the resultant hormonal imbalances shall be recognized as a serious, major public health problem afflicting a large segment of the world's population.
  
  
• The financial and intellectual resources of my government and our public and private health services shall be as fairly allocated to me and my disorder as they are to any other life-threatening and life-altering disease.
  
  
• I have a right to an early and appropriate diagnosis, treatment, care and medical intervention by the experts in these fields of medicine. I have an inalienable right to be told of - and allowed to use, whenever possible, any and all medications and treatment methods past, present or future -which will complete or assist in my healing.
  
  
• Upon completion of any medical evaluation, treatment and care, I am entitled to the emotional and psychological care afforded anyone else with psycho-socially affective disorders.
  
  
• I reaffirm my right to be treated completely so I may reclaim my place in society and my family as a fully functioning and contributing member.
  
  
• I shall not be discriminated against in my workplace or any other part of society because of my physical, mental or emotional state.
  
  
• There shall not be any financial, insurance, job, or promotional stigma attached to my diseases discovery, medical care or emotional recovery. My future life shall only be limited by conditions not under man's ability to rectify.
  
  
• My family and coworkers have a right to be informed and counseled about my illness and Its many manifestations. In order for them to understand and accept the temporary limitation to my job performance and my family obligations, they must if possible, become part of my healing environment.
  
  
• I reaffirm to the world: I am a valuable member of the society and family of man. My life is too valuable to waste. It is too costly to society and too detrimental to my family to allow me to merely exist at their sufferance and largesse.

 

• I have the right to be believed! Just because a physician has not yet heard of, or seen, my symptoms before, does not mean they are not real and deserving of medical care and further investigation.

Adrenal Crisis Letter

When multiple pituitary surgeries fail to resolve the symptoms, Cushing's patients often have to move forward by having an operation to remove their adrenal glands--the maker of cortisol. They must carry around an adrenal crisis letter explaining their condition with them at all times. This will notify medical professionals about the care that is required for us. Often, a person in adrenal crisis can not think clearly or advocate for themselves. Adrenal insufficiency or adrenal crisis is very serious. It requires a trip to the emergency room for immediate care.

Thanks to you, Robin, for sharing this information on your 365 Days with Cushing's blog. We wish you the best for your upcoming bilateral adrenalectomy (BLA).

~Melissa

COOL DIAGRAM & DOCTORS SHARE WHAT THEY KNOW WITH PATIENTS

Hi everyone.

I have been doing a lot of research online, and I want to share some of my findings. With a disease this complex, there is always more to learn.

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National Adrenal Disease Foundation has the best diagram that I have seen to explain the relationship between the pituitary and the adrenal glands.

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The Swedish Neuroendocrine Institute's Pituitary Center in Seattle, Washington has held several conferences recently that are particularly important to pituitary patients. I applaud their efforts, and I am thrilled that they have posted videos of the conferences' presentations online. These very professional videos show the speaker at the podium in a smaller screen and the presentation up close, enabling us to read the "slides" as they present them. WOW--see the speaker and the screen! This makes my day!

It is also refreshing to finally listen in, like a fly on the wall, to many different physicians talking about a disease you have. We typically only see our ONE doctor about our disease. Seeing multiple doctors with in depth knowledge wraps the patients in warmth and comfort like a warm blanket. We need that.

While patients, family, and friends are obvious beneficiaries of these efforts, the real change in medical care will come when physicians see these videos. General practitioners, internal medicine, and ob/gyn doctors often see Cushing's patients first, and many don't realize what they are seeing.  Many patients walk first into their local doctors, who may only see an occasional pituitary patient, for help. Unfortunately, these local doctors are often confused about testing, diagnosis, and especially treatment plans, which is not too hard to understand since they only read about Cushing's in one "rare disease" chapter during medical school. Therefore, this online effort will give doctors a chance to learn from experts, and this will undoubtedly improve the road for pituitary patients.

I want to thank the SNIPC for sharing this helpful information with all of us.


A Patient's Road Map to the World of Pituitary Disorders, 2010.

Pituitary Symposium (Patient Presentations), 2009

Seattle Pituitary Center Patient Education Day, 2009

Physician Conference: Advances in Cushing's, 2009

You will find direct links to these presentations, as well as many important others, on this link.


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That's all for now. See you next time.
~Melissa

CUSHIES SET THE RECORD STRAIGHT: Patients Become the Experts without the MD

Patients know more than most doctors do about Cushing's.

I was tickled pink to find this Google Knol page on Cushing's Disease/Syndrome and related endocrine disorders.

It is fantastic.  Why?  It is written by Robin from the Cushing's message boards, with help from the tenacious MaryO.

After testing for Cushing's for over 3 years, I learned a lot from the information posted on that page.  The best part is that everything is in one place, with lovely links to medical literature and diagrams that spell it all out so clearly. Essential for our routine tete a tetes with our dear, sweet endocrinologists.

In addition, I want to draw your attention to a new blog that Robin has created to show how Cushing's affects her life every day.  I bet you will find Robin's 365 Days with Cushing's Disease blog insightful.

I appreciate all of your inventive work, Robin and Mary.  Thank you again for everything.

~Melissa

Cushing's Awareness Month: What People Need to Know

April 8th is Harvey Cushing's birthday. I pay hommage to the good doctor here, so I want to move on to my latest finds.

While I didn't get a chance to post here about Cushing's Awareness Day, I set the facebook world on fire with multiple posts to my 200 friends that day.

* This disease is so underdiagnosed and testing is so complicated, we should get a whole month!!

* Did you know that 40% of the tumors causing pituitary Cushing's do not show up on high resolution brain MRIs?

* Did you know that there is no one test that determines the presence of Cushing's disease? Did you know that doctors want to see many high cortisol values in many different tests (urine, saliva, blood) that are often 3 to 4 times the upper limit of the normal range? Plus, doctors think that a high test value is 'lab error' and often ask for more testing of the test that already showed an abnormal value.

* Did you know that countless patients who do not meet these extremely high diagnosis protocals are told to go home, diet, exercise, stay off the internet, and stop wishing a disease onto themselves?

* Did you know that nearly all these patients do indeed have a neuroendocrine disease, get treatment years and years after the onset of symptoms, and they never hear an apology or receive any sympathy from those naysaying doctors?

* Did you know that Cushing's patients are often isolated from friends and family, because most think patients are just fat, lazy complainers?

* Did you know that many Cushing's patients survive this debilitating disease mostly by relying on friends made through online message
boards? Thank you, MaryO, for creating and maintaining Cushing's Help & Support, a place that so many of us can call home.

* Can you imagine being sick with a terrible disease and being told that, essentially, it is your fault? We go home wondering why doctors think we have the power to change our body's malfunctioning parts. Can you imagining living with this nagging thought from medical professionals for over 1,000 days? I began my testing specifically for Cushing's over three years ago. I am still sick, and I am facing additional surgeries to cure my reoccurence of Cushing's disease.

* Many brave Cushing's souls shared their humiliation and frustration regarding symptoms, testing, doctors, and surgeries in radio interviews in hopes of helping someone who hears themselves in their stories. You can download these interviews for free on iTunes.

* 80% of The Cushing's patients are women. This disease causes unexplained weight gain, central obesity often with a buffalo hump at the base of the neckmenstrual irregularities, infertility, mood swings, body aches, depression, headaches, diabetes, high blood pressure, extreme fatigue, muscle weakness, and osteoporosis.

* Not all doctors were A students in medical school. Many were B, C and D students. In 2010, do you really trust that your doctor is an expert in every disease out there? Beware. Research. Self-advocate. Get smarter. Get additional opinions.

* Scientists are learning that Cushing's can be genetic. Jackie, a member of our message boards, was featured on the show Mystery Diagnosis, where she discussed the diagnosis of her daughter Sam. Since then, Sam's sister Jordan was diagnosed with Cushing's. Later at the NIH, the gene (P...DE11A) responsible for Sam's illness was found. Her father carried the gene as did her two sisters. Read more on Cushie.info.

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For those who are just researching Cushing's, I'd like to point you to one of my favorite posts on this blog: Tips to Steady your Feet & Diagnosed Quickly. Read it. Reread it. Remember it. Diagnosis is difficult. Living with this disease is more difficult. Make sure you muster up enough fight in you to save your own life.

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I recently found some very helpful information from the Seattle Neuroscience Institute's Pituitary Center. Dr. Ludlum discusses the basics of Cushing's, as well as the difficulties Cushing's patients face if the tumor is not completely removed in the 1st pituitary surgery. "When the 1st surgery is unsuccessful, Cushing's patients ultimately trade one disease for another."

You can see several videos describing the pituitary gland and Cushing's straight from the good doctor.

Dr. Mark Mayberg works alongside Dr. Ludlam and shares one of the best drawings I've seen to describe transsphenoidal surgery, the surgery commonly used to remove pituitary tumors.

Dr. Ludlum has published several Cushing's-related articles.

And for the Cushing's segment that led to the subtitle of this blog, I share Kate's story with you. Kate is a close friend and an inspiration to all of us with Cushing's. Kate is still fighting to combat the damage that years of excessive cortisol production has done to her body. She is a fighter, and she will win, like we all will. And in her famous words, Kate has taught me, and others, this keep word: ONWARD.

What would you say YES to if you weren't always saying NO?

Late last night, when we usually head to sleep due to the exhaustion of our days, my husband went to HBO on Demand unannounced and selected a movie. No discussion. No hesitation. Not like him at all.  We forewent the usual pre-movie debate that ends with us not watching any move at all. He chose, and we watched, Yes Man.

Jim Carrey stars as Carl Allen, a guy whose life is going nowhere—the operative word being “no”—until he signs up for a self-help program based on one simple covenant: say yes to everything…and anything. Unleashing the power of “YES” begins to transform Carl’s life in amazing and unexpected ways.

What would you say YES to if you weren't always saying NO? 

Not only am I so unexpectedly moved by this simple notion, but I felt compelled to share this new 'attitude' with my fellow Cushies who struggle each day with all the NOs that life with Cushing's has thrown us--physical and emotional limitations that make us wonder how we will get ourselves through each passing day, and how we will ever evade the guilt we feel for dragging our husbands and children through our misery.

I don't like the life I've settled for in the past few years.

I don't like the overbearing limitations that I feel have been placed upon me, as I struggle to navigate through life among family, friends and a medical community who don't take this rare disease seriously or take the time to understand it.

I don't like the way this disease has changed the person I've always thought I could be.

I will use the dawning of this new decade to stop letting Cushing's control my life more than it already has. I have to continue to live and say yes to life in the face of this terrible and debilitating disease.
   

I want to feel more in control of what happens to me. I can not let this disease define me. It will always be a part of who I am, but it is not all that I am or all that I will become.

It may sound silly to finally GET IT all from watching a movie. After all, I am really not even a Jim Carrey fan (well, besides Liar Liar and Bruce Almighty). Maybe that is the genius of it all, isn't it? I said YES to a movie that taught me how to say YES to life.

I don't know exactly how good I'll be at this--as I face the uncertainty and ‘unfairness’ of a second pituitary brain surgery and may even another surgery to remove the ultimate cortisol culprits (both adrenal glands  in a BLA).  I will try. 


As I try all this time to find my way back to good health and not lose myself to the life this disease forces on me as well as alllllll the other Cushies, I realize I actually have more command over what happens to me than I thought.  That concept--while difficult to self-cloak—will lead me out of the darkness of disease and into the light of possibility and opportunity. And I'll finally learn that this disease has made me a better person that I ever thought I could or would be.

And don’t we all need a little more of that in our days?

Wishing you and yours a good week, a good month, and a good year.

~Moxie Melissa

HERSTORY: Seeing Yourself in a New Way

From the bitterness of disease, man learns the sweetness of health.
       - Catalan Proverb 

I am preparing a new patient packet for my new endocrinologist.  She is located only 2 miles away, and she has been vetted by three other Cushies in the area.  So, I sit here at 3 am gathering my photos, lab results, letters, imaging reports. I decided to rework my photo summary.

I always find the process of summarizing my life in photos very discombobulating.  I see images of myself, and I wonder where that person went.  It makes me very sad.  I see the weight pile on, especially during the 2000s, and it is hard to distinguish the person I am from the body that traps me.  I find that it is not as much about the weight that I've gained and my drastic change in appearance--as evidenced clearly in these photos--but it is the life that has slipped away over the years as time progressed and I became more sick. I feel like a remnant of my old self.  I am hoping that soon, I'll be able to rejoin the trajectory of the exciting life I was building before Cushing's struck my life with such a vengence. Of course, I know that while detoured, my life will soon snap back into the part of my trajectory that was meant to be.  Lucky for me, I will be bringing my husband and miracle baby along for the ride. 

~moxie melissa

To make my photo summary, I used Google Picasa.  It is very easy.  

1. select the photos you want to use in a collage
2. upload them into a new album and name it 2010 Cushing's collage so you can find it later
3. one by one, open each photo. 
4. crop each photo to include your face from the top of the head to the bottom of the chin. this will make all the photos look uniform as well as focusing on the drastic changes of your face.
5. place the photos in chronological order by dragging and dropping them into the right order.
6. hit the collage button at the bottom toolbar, 
7. select the type of collage, then same size photos.
8. select create collage.  
9. eliminate any distracting colors by making the entire collage black and white. There is a button on the left panel.
10. select the width between the photos and background color. I like a small width with a black background. I think it makes the photos pop.
11. Add text for the dates above each photo.

• put your cursor on the first photo in the college. click on top of the photo.
• go to the icons on the left panel, choose the big T for text, type the year. 
• use your cursor to reposition each text box to touch the top of each photo in the middle, so it would all look uniform. Just drag and drop. 
• Repeat until you have a box for every photo. 

HOW WOULD IT FEEL TO HAVE ADDISON'S: Wondering about life after a BLA

I have mentioned that I am facing a Cushing's reoccurrence. I have to make the difficult decision: try a second pituitary surgery or go straight to BLA, or bilateral adrenalectomy.

Fellow Cushie Gina posted Living with Addison's Disease: An Owner's Manual for Individuals with this Disease, and I wanted to share it. You may also download the owner's manual in pdf format, too.

I haven't read this yet, but I've downloaded it on my iPhone and plan to read it all! I will return and post about how this compares to the patients' experiences we read about on the Cushing's Help and Support message boards. Knowing what I know about Gina, I bet it will be a good read.

~melissa

WHY CUSHING'S MAY NOT BE AS RARE AS THEY THOUGHT: Check your Cookware and Your Chemical Neighbors

I've had this post percolating in my Draft box for a while. I was prompted to post it immediately because of a post I saw tonight on the Cushing's Help and Support message board: Cushing's is rare, eh?. CJS noted that many people in her small town in Canada were being tested for Cushing's and/or friends and family members had pituitary tumors present.

In response to that post, I want to share some other information that I found quite alarming, as I know you will, too.

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It all started with a simple internet search for new pots and pans. Ours had scratches at the bottom of them for some time, and since we were using our old bachelor/bachelorette pots and pans, we decided to buy us some new ones. Like many purchases before, we decided to research our 'green' alternatives. We wanted Le Creuset, France's best cookware, but we were trying to find a less expensive alternative. My husband is a consumer reports kinda buyer, so I put him on the job to read through all the muckety muck and present the choices to me.

My heart came to a stop. The reason that I believe Cushing's is much more common than the medical community can fathom is that the source is as ubiquitous as air. Specifically, that means that there are health dangers lurking in our home, and I purport that the cookware in our kitchens may have something to do with it. More specifically, communities where these chemicals are produced may have a higher prevalence of pituitary tumors, too.



I read the sales pitch for Mercola cookware on a site my husband suggested for me. It cited its sources, and I encourage you to read through them.

What Hidden Health Hazards Lurk in Your Cookware Cabinet?

Teflon is the most popular cookware in America. So what's wrong with it?

Well, for starters, teflon-coated aluminum contains perfluorooctanoic acid (PFOA), a synthetic chemical used in its production, creating its soap-like slipperiness and non-stick finish. PFOA has become very controversial because of health dangers linked to it.

• In April of 2006, multiple class action lawsuits were filed against DuPont representing consumers in twenty states and the District of Columbia. DuPont was charged with exposing millions of Americans to health risks from pans containing PFOA. (And that DuPont knew of the risks but failed to disclose them.) 1

Get rid of that Teflon and other potentially dangerous cookware today!

• In May 2006, DuPont said it received a subpoena from the U.S. Justice Department's Environmental Crimes Section to turn over documents about PFOA safety. This came just a month after DuPont settled a lawsuit -- with a fine of $10.25 million -- by the Environmental Protection Agency alleging that DuPont hid health data about PFOA for twenty years. 2,3

• In March 2006, a scientific advisory panel to the Environmental Protection Agency (EPA) advised that PFOA be labeled a "likely carcinogen".4 Manufacturers are to phase out 95 percent of production by 2010, and totally by 2015. It is important to note that this is a voluntary reduction by manufacturers.

Yet, despite mounting evidence, DuPont still claims that PFOA is safe ...

Just How Dangerous IS PFOA?

In animal studies, PFOA posed health hazards like:

• Serious changes in organs including the brain, prostate, liver, thymus, and kidneys, showing toxicity.

• Death of several rat pups that were exposed to PFOA.

• Changes in the pituitary in female rats, at all doses. The pituitary controls growth, reproduction, and many metabolic functions. Changes in the size of the pituitary are considered an indication of toxicity.

• PFOA has been associated with tumors in at least four different organs in animal tests, and has been implicated in an increase in prostate cancer in PFOA plant workers. 5

My Concern: You Could Be Endangering Your Family and Pets Just by Cooking with Teflon
In studies of heated non-stick pans on conventional stove tops commissioned by the consumer watchdog organization Environmental Working Group, it only took 2-5 minutes to reach temperatures producing dangerous toxins. The coating begins to break down and release toxins into the air at only 446 degrees. 6

But wait! It doesn't stop here. At 680 degrees (3 to 5 minutes), non-stick pans release at least six toxic gasses, including two carcinogens, two global pollutants and MFA, a chemical deadly to humans at low doses.7 The vapors from using these pans with high heat also caused instant death to pet birds.

I don't want you to make yourself, your family or your pets "canaries in the coal mine" with hazardous cookware!
I'm afraid the "canary in the coal mine" is not a myth. In cases of "Teflon toxicosis", the lungs of exposed birds hemorrhage and fill with fluid, leading to what must be an agonizing death from suffocation. Is it such a stretch to wonder what these fumes could be doing to you and your children?

Even DuPont acknowledges that the fumes can make you sick -- they call it "polymer fume fever". They list the symptoms as: fever between 100 and 104 degrees, chest tightness, shortness of breath, headache, cough, chills, and sore throat, based on a survey of workers who complained of the illness. 8

Although this type of cookware is most widely known by the brand name Teflon, there are many other nonstick brand names that contain this toxic coating, including: Silverstone, Fluron, Supra, Excalibur, Greblon, Xylon, Duracote, Resistal, Autograph and T-Fal, to name just a few.

I researched more online, and I found Environmental Working Group, a non-profit research organization based in Washington, DC that uses the power of information to protect human health and the environment.

Here is one EWG article from January 2005 entitled, EWG Assessment of EPA Draft Human Health Risk Assessment for the Teflon Chemical PFOA.

Pituitary gland damage. EPA scientists determined that the Teflon chemical damages the pituitary gland — the master gland of the body controlling a host of critical life functions (EPA 2002; York 2002). In its new assessment EPA has chosen to ignore this important potential health impact, even as it admits that it is statistically significant, because scientists do not fully understand why the effects peak in the middle instead of the top end of the dosing range.

I found the Environmental Working Group's article entitled, PFCs: Global Contaminants: DuPont’s Spin About PFOA.

DuPont emphasizes that the liver is the most important target organ for PFOA toxicity. PFOA causes toxicity to virtually every organ or system tested, including the brain, pituitary, adrenal gland, thyroid, ovary, male reproductive tract, immune system and kidney. PFOA also causes mammary, testicular, pancreatic and liver tumors. Effects on the ovary, pituitary, kidney, spleen and seminal vesicles were affected by PFOA at or below doses where liver effects were observed.

I found the Environmental Working Group's article from May 2008 entitled, Major Study of Teflon Chemical in People Suggests Harm To Immune System, Liver, Thyroid.

Thyroid damage: Higher blood PFOA levels are associated with changes in thyroid hormone levels. Thyroid hormone is critical for normal growth and development; the developing brain of a child is particularly vulnerable to damage from thyroid hormone changes.

I am horrified about this. With all we hear in the news, why can't I remember ever seeing this on my TV?

As a geographer and a Cushie, I am interested in partnering with anyone who wants to do further research on this topic. As a gal who grew up in Houston within 20 miles of all those petrochemical plants, I am interested to see how big business may have affected all of us. In fact, wikipedia lists these as DuPont's locations:

Locations
DuPont's corporate headquarters are located in Wilmington, Delaware. The company’s manufacturing, processing, marketing and research and development facilities, as well as regional purchasing offices and distribution centers are located throughout the world.[1] Major manufacturing sites include the Spruance plant near Richmond, Virginia (currently the company's largest plant), the Bayport plant near Houston (this is near me), the Mechelen site in Belgium, and the Changshu site in China.[8]

In this article in the Environmental Health Program with the National Institutes of Health (NIH):

"In a recent article, Tillett (2007) reported on research by the University of Pennsylvania NIEHS (National Institute of Environmental Health Sciences) Center of Excellence in Environmental Toxicology (CEET). CEET deputy director Edward Emmett described analyses of perfluorooctaonic acid (PFOA) in blood serum collected during mid-2004 from residents of towns near DuPont’s Teflon production facility in Parkersburg, West Virginia. Results of the analyses, which identified PFOA levels “60–75 times higher than in the general population,” were presented at a community meeting in October 2005, and “[DuPont] began offering bottled water to all residents being serviced in the Little Hocking Water District within days” of the meeting (Tillett 2007)."

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After all this, I just didn't want to do anything to jeopardize my health any further. We saved up then spent $400 on 6 pieces of cookware: a few skillets, a few roasting pans, a dutch oven, and a few others at a Le Creuset outlet. I have never looked back. Every time I use them, I think about how I may be saving the lives of my sweet daughter and my future grand babies with all the meals and treats I will prepare in those pots.

Plus, I look forward to collecting Le Creuset cookware in beautiful colors. I will pass these on to my family. And like all good heirlooms, these will have an important story behind them.

~moxie melissa


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Further reading:

https://www.organicconsumers.org/news/dupont-deception-and-pfoas-danger-public