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Rebecca in the Times and Democrat in Orangeburg, SC April 8,2008

'It was tough': Orangeburg woman's struggle with strange symptoms leads to Cushing's diagnosis; National Cushing's Awareness Day is April 8
By CANDACE NEWSON, T&D Features WriterTuesday, April 08, 2008

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As a dietician, Mississippi native and Orangeburg resident Rebecca Sibley was conscious of her food intake and caring properly for her body. So it was of great concern to her in 1986 when she began experiencing uncontrollable weight gain, among other symptoms.

"I had the moon face, the buffalo hump on the back of my neck, thin skin, I bruised real easily, and I had depression," Sibley said. "I knew something was wrong, being a dietician, but I just didn't know what was wrong. I knew I wasn't eating enough to be gaining the weight I was gaining."

Sibley took antidepressants for a year, which did not help, and continued to gain weight even though she was watching and counting every morsel she put in her mouth, she said. It was devastating for her as a dietitian to be gaining so much weight, and nothing she did made a difference in being able to lose the weight.

"It was tough because I was a dietician at the hospital, and I'm telling patients how to eat right, and here I am gaining all this weight," Sibley said.

She went to many doctors, who could not find what was wrong with her. Results were inconclusive, and Sibley said that only increased her emotional instability.

Taking matters into her own hands to find answers, Sibley took her doctor's advice and traveled to the Mayo Clinic in Rochester, Minn. According to the U.S. News and World Report of Best Hospitals, the Mayo Clinic is number one in helping diagnose people with endocrine problems.

Dr. John C. Morris III became Sibley's endocrinologist, diagnostician and friend. Since she had many symptoms that could be related to other diseases, Sibley had fine-tuned testing done. Not being a classic textbook case, Sibley had old photos of herself that proved to be the key to her diagnosis. Mayo made a slide of the pictures showing the progression of her disease, and that slide was used to teach medical students how photos can play a large role in piecing together the puzzle for diagnosing Cushing's disease.

Cushing's disease is a rare disorder of the endocrine system. The endocrine system consists of glands that produce hormones, which regulate processes throughout your body. These glands include the adrenal glands, pituitary gland, thyroid gland, parathyroid glands, pancreas, ovaries and testicles. The adrenal glands produce a number of hormones, including cortisol. Cortisol helps regulate blood pressure and keep the cardiovascular system functioning normally. It also helps the body respond to stress and regulates metabolism. However, when the level of cortisol is too high in the body, Cushing's disease may develop.

Cushing's disease was discovered by American physician, surgeon and endocrinologist Dr. Harvey Cushing (1869-1939) and reported by him in 1932. Cushing's birthday -- April 8 -- has been chosen as National Cushing's Awareness Day.

Cushing's disease is characterized by a variety of symptoms and physical abnormalities. These include weight gain; upper body obesity; round face, often referred to as a "moon face"; fat pads along the collar bone and on the back of the neck known as a buffalo hump; hyper pigmentation of the skin; severe fatigue and muscle weakness; excess sweating; bone loss; persistent hypertension; insulin resistance, which can lead to diabetes mellitus; depression; anxiety; backache; thin skin with easy bruising; and purplish-red stretch marks on the trunk, buttocks, arms, legs or breasts.

"Its very typical of a person to go for years with this disease and not know what was going on," Sibley said. "I went through a two-year process, which is a lot faster than what a lot of people get."

Although no tumor was seen on a CT scan of her adrenal glands or on a MRI of her pituitary gland, several weeks of specific testing including doing experimental testing pointed to a pituitary tumor. Sibley met with neurosurgeon Dr. Dudley H. Davis, who explained the risks of doing the exploratory transsphenoidal microsurgery, whereby the pituitary gland is accessed through the upper lip and nasal passages.

Sibley had her first transsphenoidal microsurgery on May 4, 1988, and a 4-millimeter tumor was removed. Soon after surgery, she started losing weight, and her depression ceased.

Sibley fell into the 10 to 20 percent of patients that experience a recurrence of tumors, and a second pituitary tumor the size of a BB was removed on Jan. 13, 1994.

The most difficult part of dealing with her diagnosis was the effect it had on her as a mother and wife, Sibley said.

"It was tough, particularly for my two children, more so for me as a mother for my children not being the best mother I could be," she said. "They understood what their mother was going through and were very supportive."

Sibley still managed to attended all of her children's extracurricular activities, even though she said she "let the house go." Her son, John Paul, and daughter, Jennifer, are graduates of Orangeburg-Wilkinson High School.

Sibley's husband, Daniel, said 50 hours of counseling training he received around the time of his wife's diagnosis was a great help in getting him through some of the problems they were having.

"I think a lot of our strength came from our faith and commitment to one another," Daniel Sibley said. "I've seen my role as just helping to support her. I've tried to support my wife. We've been blessed that we've gone through this together."

Daniel Sibley said he's blessed

to have his wife and believes her background as a dietician and her family background (her father was scientist, and her mother was educator) helped her through, as well as her faith in knowing that no matter what comes her way, God is in control.

As a result of keeping a journal every night of the progression of her life with Cushing's disease, Rebecca Sibley has written a book, "Through It All God Reigns" (www.throughitallgodreigns.com). The first edition was penned in 1988, and, following her second tumor, she wrote volume two in 1994.

Sibley said her book has gone across the world to help others struggling with this and other illnesses and has been included in Cushing's disease support group newsletters and located in several libraries and bookstores. Sibley said it's a privilege to have the opportunity to counsel others on Cushing's and make the community aware of the disease.

T&D Features Writer Candace Newson can be reached by e-mail at cnewson@timesanddemocrat.com or by telephone at 803-533-5540. Discuss this and other stories online at TheTandD.com.
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The following comments are reader submitted. They do not represent the views of The T&D or Lee Enterprises.

jp wrote on Apr 8, 2008 10:10 AM:
" Rebecca's website is http://www.throughitallgodreigns.com "

Rebecca in Post-Bulletin in Rochester, MN

Health
'Friendly' Rochester aids patient's recovery
5/12/2008 8:39:19 AM
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By Jeff Hansel
Post-Bulletin, Rochester MN

Rebecca Sibley only lives in Rochester a few days a year.

She considers it almost a second home. "We have found friends. We go to Trinity Presbyterian Church in Rochester," she said.

She comes to Rochester for medical care, like thousands of other temporary residents from across the country who stay in Rochester a day, a week or, sometimes, many months.

The first few times Sibley came to Rochester, she seemed to always meet someone with symptoms similar to her own.

Sibley, now of Orangeburg, S.C., had become overpowered by depression that changed her once joy-filled life in Mississippi.

Getting a diagnosis took a long time. But she finally learned she had Cushing's syndrome, an illness caused by excessive cortisol hormone in the blood, according to cushings-help.com.

Sibley's illness was caused by a tumor on her pituitary gland.

"Just my faith and the Lord has seen me through everything. It hasn't been an easy road. But I feel like God has helped me through each hoop. And, with that, I feel like God has used me to help other people," Sibley said.

In 1986, she noticed weight gain, sleep loss and a sudden personality change. Her life spiraled downward. She recorded 35 symptoms in a journal she kept to monitor patterns in her illness.

The symptoms included low self-esteem, decreased appetite, constant weight gain, decreased sex drive, uncontrolled irritability, crying and slowed memory. As a registered dietitian, the weight gain embarrassed Sibley when she went to work back home. Some coworkers asked why she was letting herself go, and she worried about what patients thought.

"I monitored my caloric intake and knew that I was consuming fewer calories than was nutritionally safe," she wrote. Yet the weight gain continued.

Tests for a chemical imbalance suggested she had a tumor.

That led Sibley and her husband to Minnesota and what, at the time, was Connolly's Downtown Motel in Rochester. Today, Sibley estimates she's been to Rochester 25 times or more and she expects to continue receiving treatment here.

She wants to raise awareness of Cushing's syndrome. But she also wants the people of Rochester to know the part they play in the recovery for the thousands of patients who call Rochester home for brief periods of their lives.

"That's the thing about Rochester, is it is such a friendly town for the stranger to come into," she said.

The test she took at Mayo Clinic was experimental. Today, it's standard protocol.

She had a tumor removed and her weight quickly began to drop. Her symptoms returned, but removal of a second tumor left her feeling herself again.

Sibley takes growth hormones, the kind baseball stars have been accused of taking illegally.

"I think the hardest thing for people when they can't find an answer is not having a name put on something when you know something is wrong," Sibley said.

Web links

* Cushings Help and Support
* Cushings Support and Research Foundation

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Mayo Clinic Jacksonville

Danny and I went to Jacksonville, FL to the Mayo Clinic there for Rebecca to see the gastroenterologist she had seen in Rochester who is now Department Head of Internal Medicine in Jacksonville. It was a full 4 days of testing. They checked me for some rare things and also found that all my pelvic organs are falling out of me. I will be seeing a physical therapist to try to build up muscle and then will have to have surgery to put my organs back in place. It will be a very painful surgery I am told and I am not looking forward to it....

Reformation Day with Martin Luther

Danny decided to be Martin Luther at our church gathering tonight. Amazing how many people did not know who he was. He got to share with three teenage girls who asked him who he was about Martin Luther and the reformation. Here is a story below about Martin Luther that was sent to us this week.

October 31st, 1517
Wittenburg, Germany
It was October 31st, 1517 in Wittenburg, Germany.

Martin grasped a hammer and a long piece of paper covered with his writing. He walked out into the street and straight over to the castle church door. It was here that community messages were often posted.

Martin nailed his 95 points of discussion on the door. He only wanted to lay out his newly discovered views of the Bible to other church leaders in the Medieval Catholic church. He thought he was free to do so even though his thoughts were radical. After all, he was an Augustinian monk and a professor of theology.

Martin called himself a "stinking bag of maggots," and certainly did not dream of being a leader in a revolution of thinking in Germany and across Europe that shaped history in a powerful way. But God had determined something far bigger than the monk Martin Luther expected when he penned those 95 Theses.

Without his knowledge someone printed his words on the newly invented Gutenburg press, distributing it all over Germany. Within a very few days, Martin found that he was the subject of everyone’s thoughts. In the cathedrals and great stone castles of his homeland, the pubs and peasant’s cottages—everyone was talking about the views of Luther. Without a signal to announce it, the Protestant Reformation had begun!

Just what was the Protestant Reformation all about? What did Luther and others protest?

The protesters were seeing something new about how a person is accepted by God—that is, new to them. They protested that the church had been teaching the wrong view about the most important issue of life. They discovered that the Bible says we are not accepted on the basis of our religious deeds, or even our good deeds along with our faith, but that we are accepted before a holy God only through faith in Christ.

"Through faith alone in Christ alone" began to be heard all over Europe. The people must transfer their confidence for salvation in the church’s religious traditions to Christ alone. The reformers wanted the people to return to the Bible’s plain teaching on how to be a true Christian. Because heaven and hell were at stake, the passions rose very high. Many would be persecuted and some even killed for this truth. But through it all, tens of thousands of people were converted to Christ and were assured of heaven.

We have been feeling the effects of the Protestant Reformation ever since. Many of our churches have their historical roots in the Reformation. Returning to the Bible as the source of understanding about how we are to relate to God has shaped nations. Perhaps no other religious period since the coming of Christ has been so influential as this one.

But many people, and even many churches, have forgotten the great lessons that were made so clear beginning on October 31, 1517. What difference can this mean to you nearly 500 years later?

This passage from the Bible is a good place to start. It describes God’s way to understand salvation:

For by grace you have been saved through faith, and that not of yourselves; it is the gift of God, not of works, lest anyone should boast. (Ephesians 2: 8-9)
Through these 500 years since the Protestant Reformation, and throughout time, men and women, youth and children have come to Christ in this simple way—through faith alone in Christ alone. Placing our full confidence in Christ’s perfect life and sacrificial death for sinful people is the only way to God. It is not that good works are not important—they are a result of true faith in every believer’s life. But those works cannot save. Salvation is a gift of grace, not a reward for trying to be good.

Like Martin Luther, you may come by faith alone to Christ alone even now, all these years later. In fact, this is the very way the first New Testament believers came to Him!

Isaiah is sooo smart!

A couple of weeks ago, we were waiting to leave an eating place and Isaiah had my keys in his hands. All of a sudden, I heard the panic alarm go off on our new van and it hit me that Isaiah had my keys! He had hit the panic button! Had I left the keys with him, I am sure all the doors would have been opened and closed and opened and closed!! Then last weekend, we had gone to Redeemer church and Danny and Jennifer were watching Isaiah after church and I saw he had Jennifer's keys. I told Jennifer what he had done with my keys a few weeks before and she said...my alarm won't go off this far away. Well, I headed out to our van and when I got outside people were looking all around and asking.."whose car is that?" The alarm was going off....Thankfully I had a set of Jennifer's keys and cut the alarm off. I then went inside and told Jennifer and Danny that in fact the alarm DOES work this far away and that Isaiah had set off her car alarm! So watch out, if Isaiah gets your keys...beware that he is very handy at pushing buttons! I have some old keys and an old alarm key pad that never worked that I will be giving Isaiah before long so he can have his OWN set of keys to play with!!