Saturday, January 30, 2010

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

Monday, January 18, 2010

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. 

Sunday, January 17, 2010

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.

**********

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]

Needless to say, we 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. Ever 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

Thursday, January 14, 2010

SUSPICIOUS MINDS: The King of Rock & Roll had Cushing's?

What if we could sing this to our doctors:

"Why can't you see
What you're doing to me
When you don't believe a word I say."
~ Elvis' Suspicious Minds



In an article release today, Elvis Presley's personal physician details the medical health of the legendary rock star. Up to this point, Dr. Nick was held accountable for the King's death, even losing his medical license in Tennessee for the over-prescription of drugs that led to Elvis' death.

I read the article with a fan's fascination. I was struck by the simple word included in the article: Cushing's.

Perhaps Elvis had what I have: Cushing's disease.

The article mentions Cushing's syndrome from excess steroid usage. However, in general, the symptoms Elvis sought to medicate heavily are things I have wished someone could help me with. Perhaps Elvis had Cushing's disease as an underlying cause to all of his symptoms? The article says Elvis' hospital test results showed Cushing's syndrome. What if it was the other way around? Perhaps Elvis had severe pain from Cushing's disease (pituitary tumor could be the cause of the eye pain), and the docs gave him additional steroids to help the symptom of pain. It is possible!

He couldn't fall asleep at night.
He gained weight and lose weight.
He was irritable and impatient and volatile (at times).
He had headaches and eye pain.
He had to stop what he was doing and sit down to take a break.
He had diarrhea and colon problems.

And the list goes on and on.

Elvis was found dead at the toilet after vomiting. Perhaps he vomited from low blood pressure caused by low cortisol. Perhaps adrenal insufficiency.

What does it do to our reality if Elvis was not just an eccentric celebrity with money? What if he was a sick man, miserable and in pain, trying to keep up with a daily schedule that is maxxed out beyond what any of us with Cushing's (or without Cushing's) could imagine??

If you are a Cushing's patient, did you find yourself nodding in understanding when reading this story??

Elvis had the money and the means. He got the prescriptions that he felt he needed. He was treating the symptoms, not the disease. Most physicians didn't know any better. Most physicians don't know any better now.

The photos include in the article show an Elvis whose weight came on fast and suddently. I remember the Elvis of the 70s, and I remember being among the millions that wondered how that handsome legend's appearance could change so drastically.

Stars-doctor-finally-reveals-true-madness of final days.

This makes me so sad. I hope the medical community wakes up and figures out how to treat this disease. What other promising lives are lost too early to this RARE disease called Cushing's??


-Melissa

P.S. Remember, celebrities do not always disclose their medical struggles to the public. This is a relatively new phenom. Remember my post about JFK having Addison's?

Wednesday, January 13, 2010

I'M JUST GONNA SAY IT

I did midnight testing for Cushing's on December 8 and 9, 2009.

My midnight cortisol serum results were high. Both days.

Normal level is 0. Mine were 5.93 and 6.1. WAY TOO HIGH.

This is a bad sign that my Cushing's may be reoccurring.

HIGH. Just like before surgery.
HIGH. My hopes for my family's return to normalcy.
HIGH. My anxiety over how long it will take for me to be the person, wife and mother that I want to be, the one that I know I am inside.

I am working on setting up a testing schedule with my new endocrinologist in my new town. I'm reconstructing the story of my life in lab results, MRI reports, and emails to doctors. This stack is as big as a ream of paper. That's 500 sheets! More than three years of my life are caught up in those papers. How much more time will Cushing's take from me?

I am sure the testing protocol will include continued cortisol testing, adrenal scans, lung scans, perhaps even another IPSS. So many more tubes of blood, urine samples, lab trips, doctor visits, questions and half answers. I'm not looking forward to it.

Onward.
~Melissa

Saturday, January 9, 2010

Test Results, Schmest Schresults

Well, I finally got my greedy little hands on my test results. January 6, 2010. My tests were run December 7-10, 2009.

I can't organize my thoughts well enough to post a complete summary, so I'll let it all percolate in my cranium and see if something worthwhile falls out.

Check back soon!
Moxie Melissa

Patients With Mild Cushing Syndrome May Benefit From Adrenalectomy

I found this article. A little dated but shows that some Texas endocrinologists recognize early to mild Cushing's. Yahoo for the DFW Cushies. Good luck to you.

NOTE: This post is not recommended as medical advice. Please visit your doctors on your own accord, and make your personal health decisions for yourself. Never substitute my judgment for your own.

~Moxie Melissa


Patients With Mild Cushing Syndrome May Benefit From Adrenalectomy



Medical News Today
Patients With Mild Cushing Syndrome May Benefit From Adrenalectomy
09 Dec 2007

Researchers at UT Southwestern Medical Center have found that patients with a mild form of Cushing syndrome, a metabolic disorder caused by adrenal tumors, demonstrate substantial clinical improvement after adrenalectomy.

The study, appearing in the December issue of the journal Surgery, is the largest series of surgical outcomes reported in patients with subclinical Cushing syndrome to date, said Dr. Richard Auchus, associate professor of internal medicine at UT Southwestern and co-author of the study.

"We don't have enough data to come out with a definitive statement that everyone with an adrenal tumor and mild cortisol excess should have the adrenal tumor removed," Dr. Auchus said. "We can say, however, that there are many people with large adrenal tumors who, while not meeting classical criteria for Cushing syndrome, nonetheless suffer from the hormonal disorder and will benefit from surgery."

Cushing syndrome occurs when the body's tissues are exposed to excessive levels of cortisol, a hormone which helps regulate glucose and fat metabolism. Cushing syndrome is caused by tumors of the pituitary or adrenal glands making too much hormone for long periods of time.

Symptoms vary, but most people with Cushing's, also called hypercortisolism, have upper body obesity with increased fat around the face and neck. Diabetes, hypertension, thin skin, muscle weakness, bruises and fatigue are also common.

Though the more overt Cushing's affects about 1 in every 5,000 to 10,000 people, milder, or subclinical, Cushing syndrome may affect as many as 1 in every 1,000 people in the population, Dr. Auchus said.

In the current study, Dr. Auchus' research group analyzed the records of 24 patients who underwent adrenalectomy at UT Southwestern between 2003 and 2006 because of abnormally high cortisol production. Of the 24 patients, nine met the researchers' definition of subclinical Cushing syndrome.

Dr. Auchus said the results were telling. Diabetes and hypertension improved considerably in most affected patients after adrenalectomy. In addition, all eight patients who reported easy bruising before surgery noted resolution of the problem, and seven of the nine patients lost weight. Fat accumulation around the neck disappeared and muscle weakness improved, often markedly.

"We cannot promise everybody the same results," Dr. Auchus said, "but we found that adrenalectomy can dramatically help some patients."

Dr. Auchus said there are many caveats to their findings, chief among them that the study was not random.

"It was a very select group," Dr. Auchus said. "Because they had certain clinical symptoms, we offered them surgery.

"We now have a handful of additional people who have biochemical indications of subclinical Cushing syndrome, but we haven't recommended surgery because they don't have hypertension, obesity or easy bruising. We're continuing to repeat their blood and urine tests for cortisol function over time."

The classic manifestations of Cushing syndrome, such as purple stretch marks and paper-thin skin, occur only in severe cases. Patients with overt Cushing syndrome are generally diagnosed after a 24-hour urine collection for cortisol. Levels higher than 50 to 100 micrograms a day suggest Cushing syndrome.

It is more difficult to diagnose subclinical Cushing syndrome because patients' symptoms are non-specific, such as fatigue, obesity and hypertension. Using the traditional diagnostic tests, patients with subclinical Cushing syndrome rarely have enough cortisol in their urine to raise concern.

"The cutoff values are intentionally set high so that we minimize the false positives," Dr. Auchus said. "But when you do that, you miss those with early or subclinical Cushing."

Dr. Fiemu Nwariaku, associate professor of GI/endocrine surgery and vice chairman of surgery, said the message to physicians is to maintain a high level of suspicion for hypercortisolism in patients whose biochemical tests are not completely normal and repeat biochemical studies periodically.

"Unless a patient's test results are clearly negative, they should probably get more complete testing," said Dr. Nwariaku, senior author of the study.

The researchers next plan to organize a multicenter trial to define better subclinical Cushing syndrome and guide recommendations for diagnosis and therapy. They also plan to study the genetic mechanisms of why some people suffer the manifestations of mild hypercortisolism, which others don't.

Other UT Southwestern researchers involved in the study were lead author Dr. Ian C. Mitchell, surgery resident; Dr. Kavita Juneja, internal medicine resident; Dr. Alice Y. Chang, instructor of internal medicine; Dr. Shelby A. Holt, assistant professor of surgery; and Dr. William H. Snyder, professor of surgery.

Visit http://www.utsouthwestern.org/patientcare/medicalservices/endocrine to learn more about UT Southwestern's clinical services in endocrinology.

UT Southwestern Medical Center
5323 Harry Hines Blvd.
Dallas, TX 75390-9060
United States
http://www.utsouthwestern.edu

Article URL: http://www.medicalnewstoday.com/articles/91136.php

Main News Category: Endocrinology

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