Coping with Cushing's

Articles reprinted from "The Cushing's Newsletter"

Fall, 1995

Coping: What Can I Do About Depression?

by Margaret McClelland, OTR, MA, MFCC

Depression is a very common symptom of Cushing's Syndrome. Depression is a response to chemical changes in our brain that occur when we are overwhelmed by stressors. There are many factors that can contribute to feelings of depression, however, a few of the following items may assist you in coping.

1. Recognize that with Cushing's, your body chemistry is extremely out of balance. The normal checks and balances that allow your body to deal with stress are no longer functioning. Under normal conditions, cortisol provides the important function of helping your body respond to stress. Since your body can no longer deal with stress in the normal ways, you can help yourself by reducing the stress in your life as much as possible. Make an inventory of the stressors and decide over which ones you have no control, some control and total control. Then set your priorities and plan how to lighten your stress load.

2. Part of depression is feeling helpless and hopeless. The above exercise will help empower you to have some control over part of your life. Now you can make a list of the areas of your life in which you do have control to assure yourself that you are in the driver's seat. Explore ways in which you can become more proactive in steering your way through this experience. Some ways include;

a) gaining as much knowledge about your condition as you can. Knowledge is power.

b) Get into contact with others who have Cushing's or other rare diseases. Many of your problems overlap and you can support each other with information and affirmation.

c) It helps to have someone who is willing to hear your complaints without turning off, such as a therapist, clergy person or support group. Be cautious using family and friends for this purpose as they may not be equipped to deal with your anguish.

3. Part of your depression is probably due to grief about the losses you are experiencing. The loss of energy, being able to do all you used to do, changes in your body, changes in relationships due to your condition, are only a few of the losses. The list can go on and on. Recognizing your losses and honoring them as valid can assist you in moving toward the acceptance that is necessary before you can move on.

4. Another way to take care of yourself is to seek out those things that give you pleasure. Even the simplest object of beauty or time with a special person can give you a boost. Surround yourself with sights, sounds and fragrances that please you. Remember that your whole person needs nurturing even when you feel the need to focus on your condition.
5. Above all, be kind and gentle to your-
self!

Editor's Note: Margaret is an Occupational Therapist and Marriage, Family, and Child Counsellor in Livermore, CA. Margaret is a cancer survivor and has run numerous support groups for those dealing with illness and disabilities. You can reach Margaret at margmccl@aol.com.

EXAMPLE OF STEP 2

Stressor	Ways to empower
Physical Symptoms	Don't dwell on it, One day at a time, Learn more about Cushing's
Housework	Have the family help, make lists, hire help?
Can't do fun things	Think of things I can do that are fun. Cut roses, take a bath.
Feel alone	Contact others with Cushing's, find a support group
Dealing with my doctor	Take someone with me

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Spring 1996

Coping: Living With the Lifestyle Changes

by Margaret McClelland, OTR, MA, MFCC

When a long standing condition such as Cushing's occurs, no one realizes the losses involved. We always hope that we will improve, but also fear that we will not. There is often a sudden shift in lifestyle that can be devastating. The challenge is to make this lifestyle tolerable and enjoyable. How can we do that?

1. Live in the moment! Regretting the past and fearing the future only add to your burdens. Try being in the moment. Usually we can tolerate one moment at a time. Create some moments that give you pleasure. Enjoy the moon, the sunset, favorite music, a work of art, pictures of loved ones, a flower. The list can go on with your favorite things. Write them down as a reminder.

2. Be patient with yourself! The chemical changes in your body have probably affected your brain function. There may be memory problems, confusion, and a short attention span. Accept this with understanding and humor. If you can share the problem with others, they will be more likely to understand and help you out. Allow yourself to make mistakes or forget. Experiment with writing reminder notes to discover what may help you.

3. Pace yourself! Your energy level is no doubt lower than it was in the past, so plan accordingly. Do not over schedule yourself. Explain this problem to those who expect you to function at your previous levels. Break your tasks or pleasure activities into small chunks, so that you can experience some completion. Remember it is OK not to meet all your commitments, but make it clear to others in advance that you may not be able to.

4. Change your attitude! Shift your focus from what you cannot do to what you can do. Keep adding to your inventory of things that you can do now. Resurrect some old interests that you have had no time to pursue. Accept the challenge of creating a life within the limits of your condition. Explore activities which are so absorbing that you can forget time and your problems. Share your discoveries with others so that they can try new things. Move from being a victim to being a survivor.

5. Love yourself! Your appearance many change, and your condition may send you on a roller coaster of feelings, but deep inside, you are still the same person that you always were. Trust in your deep inner self that you are able to handle this situation with grace. Treat yourself to special things that make you feel good about you. Above all, be kind and gentle to yourself!!

Editor's Note: Margaret is an Occupational Therapist and Marriage, Family, and Child Counsellor in Livermore, CA. Margaret is a cancer survivor and has run numerous support groups for those dealing with illness and disabilities. You can reach Margaret at margmccl@aol.com.

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Summer, 1996

Coping: The Value of Relaxation and Visualization

by Margaret McClelland, OTR, MA, MFCC
When we read about staying well or healing, we read a lot about relaxation, visualization, and imagery. Book stores and catalogs are full of books and tapes on these topics. The holistic or whole body approach to health always stresses these disciplines.

Question: How can these possibly help my health?

Answer: Our bodies are built to have periods of stress followed by longer periods of relaxation. Our current lifestyles and living with a chronic illness add up to chronic stress, which prevents the body from ever reaching equilibrium. The stress chemicals stack up and inhibit the immune system which thrives on positive attitudes and lack of stress.

Question: Where does one begin?

Answer: The simplest place to begin is with relaxation. We all know what it means, but few of us know how to get there. We start with breathing slowly and deeply into the belly and then exhaling slowly. This simple act can change the way we feel, add oxygen to our system, slow the heart rate and reduce anxiety. Focus on the feeling of the breath as it moves in and out or focus on the movement of the chest and body sensations. You should find the body letting go. You can do this anywhere, anytime and it is a wonderful relaxer when stopped at a red light or stuck in a long line.

Question: What are some other ways to relax?
Answer: Progressive Relaxation developed by Jacobson, involves tightening and loosening the muscles section by section from the toes to the scalp and feeling the release as you let go. Autogenic training begun by Schultz, has you in a very comfortable position as you let yourself feel the heaviness of different parts of the body. These processes help you learn the sensations associated with relaxation so you can reach that state at will. Biofeedback is another way to learn to relax. Relaxation is a prerequisite for the success of visualization.

Question: What is visualization or imagery?
Answer: Images form in the brain as we think or daydream. These imaginings may include visual, auditory or kinesthetic (tactile, smell or taste) forms. When we worry we may have disturbing images which are not healing. By directing our minds to positive, relaxing, or pleasure producing images, our body gets the message that it is safe to relax. This process has been shown to improve immune system response.

Question: How do you start doing a visualization?
Answer: You start by getting into a relaxed state described above. Then close your eyes and take yourself in your mind's eye to a special place in nature where you feel safe and comfortable. Look around this place and notice what you see. Notice the colors and shapes of things around you. Breathe in the aroma of the place. Listen to the sounds. Reach out and touch something. Feel the air on your skin and the ground under your feet. Allow yourself to experience this place through all of your senses. Bask in the good feelings that fill your body. You can use this visualization any time to get the benefits of a mini vacation because your body believes it actually has been in this place. (I check into my beach several times a day!)

Question: What if I get distracted and cannot follow the visualization?
Answer: Distraction is natural. The mind has been described as a naughty monkey. When thoughts interfere, we just pull ourselves back to our purpose. Some find that a tape recording is helpful and dozens are available in book stores or you can make your own. You may find a group in your community where these techniques are taught and most psychotherapists or hypnotherapists can assist you in learning how to visualize. "Letting Go of Stress" is one of many tapes by Emmett Miller, MD, that are very helpful. Martin L. Rossman, MD, and Bernie Siegel, MD, both have books and tapes that are readily available.

Question: How is meditation different?
Answer: In meditation, the goal is to concentrate on an object such as the breath, a visual object or a word so that all other thoughts and sensations go unnoticed. This is a rigorous discipline and it takes years to achieve the "ultimate" peace and calm. We will discuss meditation in a later column.

This is only a brief overview of some practices that have all been shown to improve health. The miraculous body mind connection is well described in Deepak Chopra's books. For more information check your library and book store.

Editor's Note: Margaret is an Occupational Therapist and Marriage, Family, and Child Counselor in Livermore, CA. Margaret is a cancer survivor and has run numerous support groups for those dealing with illness and disabilities. You can reach Margaret at margmccl@aol.com.

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December, 1996

Coping: Meditation

by Margaret McClelland, OTR, MA, MFCC

"Meditation is the art of paying attention, of listening to your heart. Rather than withdrawing from the world, meditation can help you enjoy it more fully, more effectively and more peacefully."

Dean Ornish, M.D.

We hear a lot about the benefits of meditation, but we really have to start experiencing it to appreciate it. There are two types of meditation, concentration practices and mindfulness or awareness practices. The purpose of each is to still the mind. The benefits of each is an inner peace and clarity of thought.

With the concentration style, we focus on a single thing such as our breathing, a mantra (a word or phrase), an object, a sound or a movement. You can experiment with what works best for you. The goal is to block out all the chatter in the mind so if you find the chatter continuing, try a different focus.

With the breath, a focus in many time honored traditions, you sit and just notice the breath as it enters your nostrils, as it moves down into your lungs and as it is released. Notice the sensation of it and movement of the chest as it moves in and out. Some breathe to a count of 4 in, 4 hold, 4 out and 4 hold. You can increase the count as you become more skillful.

In using a mantra, choose a word or phrase that does not have an emotional connotation for you. By repeating this in your head you cut off the chatter and thereby move into a meditative state.

Some people are more visual and do better looking at something such as an orange or a flower. Continue to look at it and draw yourself back to it every time the mind wanders. Look with a 'soft' eye - an unfocused gaze.

For those that are auditory it may help to listen to a repetitive sound such as Gregorian Chant or records of bells. Something fairly monotonous is probably best, although I knew a woman who could only meditate with Elvis Presley!
Some of us are more restless and find it difficult to sit for more that a few minutes. In this case a walking meditation is helpful. One walks very slowly and attends to every aspect of walking: the placement of the heel, the movement of the foot, the shift of balance from one foot to the other, the experience of the ground.

The mindfulness practices involve bringing awareness to the mind or body at any given moment, no matter what you are doing. Instead of emptying the mind of thoughts we are paying attention to the experience we are having now. We notice what we are feeling physically, mentally and emotionally without judgment or reaction.

The beauty of mindfulness is that you can do it anywhere, any time. Any task you do can become a meditation: showering, doing dishes, weeding, washing the car, mowing the lawn, etc. The Vietnamese Buddhist monk, Thich Nhat Hanh has a number of books on mindfulness and applying it in our lives.

I encourage you to try some of these meditations. Start out with a few minutes to discover what works best for you and work up to 20 minutes. Many who meditate only 20 minutes a day find the quality of their work and their lives greatly improved. It all starts with making the choice for a better life.

For more help, check books in the library or bookstores. Some people find a meditation class or a group that meets regularly for meditation helpful in developing their skill.

Editor's Note: Margaret is an Occupational Therapist and Marriage, Family, and Child Counselor in Livermore, CA. Margaret is a cancer survivor and has run numerous support groups for those dealing with illness and disabilities. You can reach Margaret at margmccl@aol.com.

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March, 1997

Coping: Recovery From Cushing's Syndrome: Emotional Aspects

by Giovanni A. Fava, MD

The onset of Cushing's syndrome is often gradual and cumulative. The illness seems to unfold its harmful potential over the course of several months or years. Cushing's syndrome, because of the effects of hypercortisolism on the central nervous system, deeply affects the psychological state and balance of a person and these effects develop insidiously. No other medical disorder is associated with such a high rate of depression as Cushing's syndrome (50-70% of cases).

In Cushing's syndrome, and in general, depression often begins with the patient who retires from usual social activities and, if forced into social situations, seems to be uncomfortable. Work takes longer to complete and is carried out with great difficulties. Indifference sooner or later is replaced by sadness; an overwhelming sense of inner emptiness and despair. Whatever is experienced seems to be painful. Past, present and future take a gloomy shade. Fatigue, sleep difficulties (particularly early morning awakening), and trouble concentrating ensue, often associated with irritability, guilt and anxiety. How a person experiences the pathological process, what it means to him/her and how this meaning influences his or her behavior and interaction with others, are all integral components of disease.

Physicians, however, are inclined to neglect the personal experience of illness and to concentrate their attention toward overtly physical symptoms and objective measurements. If and when Cushing's syndrome is properly diagnosed (for still too many patients, this seems to be an endless process), the diagnosis itself is perceived as "the end of a nightmare" - as a patient of mine stated. The patient then eagerly waits for the expected treatment. Particularly when surgery is involved, an immediate cure and restoration of well being are expected. Even when things turn out well, however, recovery is not immediate and seems to drag on. The patient feels better, much better; but does not feel fine. "I am no longer the one I used to be" is a frequent complaint. "I am disappointed that recovery from the disease is going to take so long,..." a patient wrote in his personal account of Cushing's syndrome. "I am not ready to go back to work, to do the things I used to do" is the next logical step.

Something that is often neglected is that the process of recovery is a long and winding road. There are as many ways of recovering from illness as there are ways of becoming ill. Often, the duration of the process of becoming ill dictates the duration of convalescence. This is a general principle that applies to many illnesses. For instance, chickenpox has a quick onset and rapid recovery in children, whereas it develops insidiously and tends to last longer in adults. Recovery from Cushing's syndrome has a natural course to run (usually more than 6 months), even when everything turned out O.K. (surgery, post-treatment hormonal values, regression of physical signs and symptoms, etc.). The speed with which it happens, however, may depend on several factors.

First, as it has been frequently emphasized in this newsletter, maintenance medication should be properly individualized. Different dosages of glucocorticoid replacement (when indicated) may entail different psychological effects. It is thus crucial to check with one's endocrinologist during the follow-up period.

A second issue applies to many disorders. Avoidance is a big enemy of the recovery process. While not all patients are able to resume work or other activities the same way they did before falling ill, in Italy, it is very unusual for a recovered patient with Cushing's syndrome not to go back to work, if he or she worked before. One should go back to work when told they are able to do so by his/her physician. In some cases, if a patient waits to be ready to return to work, they may never be ready. Even if one isn't able to return to work, one should start doing things again. It will be tough, painful, and frustrating at times. Avoiding situations that induce undue anxiety first relieves the distress, but then results in its further increase and perpetuation. Anticipatory anxiety can be defeated only by regular exposure to the anxiety-provoking situations. Not only is it important to resume work if feasible, but also to gradually go back to all activities one was used to doing. Similarly, depression is fostered by the time spent ruminating about the past, worrying about things to come, and indulging in self-pity.

Third, specialized help may be sought if psychological symptoms (particularly depression) persist, even a few months after surgery. A psychiatrist is the first choice because he/she may decide about the opportunity for short-term drug treatment with antidepressants. Some patients received these drugs before their illness was properly diagnosed. At that time, the drugs did not help, thus patients are skeptical when they are prescribed again. But, the same antidepressant drug which did not work in the presence of hypercortisolemia, may work when cortisol levels are normal. Yet, one should remember that self-therapy (exposure, scheduled activities, reaction to depressive thoughts), is in any event the main form of psychological treatment.

Recovery from Cushing's syndrome has its ebbs and flows. Some days you feel great, and some other days, awful. Some days you feel you will make it, the next day, like you won't. As long as you keep a positive attitude (focusing not on the distance from your established goals, but on the progress you have made), overcome your impatience and are not ashamed of seeking specialized help, if needed, you will make it.

References

Armstrong, A. The Phenomenology of Cushing's Syndrome: One Patient's Account. Henry Ford Hospital Medical Journal, 1991; 39:8-9

Fava, G.A., Sonino, N., Morphy M.: Psychosomatic View of Endocrine Disorders. Psychotherapy and Psychosomatics, 1993; 59: 20-33.

Lipowski, Z.J.: Psychosocial Aspects of Disease. Annals of Internal Medicine, 1969; 71: 1197-1206.

Sonino, N., Fava, G.A., Fallo, F., Boscaro, M.: Psychological Distress and Quality of Life in Endocrine Disease. Psychotherapy and Psychosomatics, 1990; 54: 140-144.

Editors Note: Dr. Fava is a psychiatrist at the University of Bologna, Italy. He has over 15 years of experience in dealing with psychological aspects of Cushing's syndrome. He collaborates with his wife, Nicoletta Sonino, MD, a leading endocrinologist in the medical treatment of hypercortisolism.

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June, 1996

Coping: Answers to Your Questions

by Giovanni A. Fava, MD

Question: My doctors say that I am cured from Cushing's, but I have so many continuing problems such as fatigue and pain. My doctors feel that they have done all they can to help me. Do you have any suggestions as to how to emotionally cope with these continuing problems?

Answer: In many illnesses there is a discrepancy between physicians and patients as to the meaning of cure. If a patient has shown a good response to treatment, physicians tend to focus on the progress that has been made and to underestimate the distance from the expected goal. For the patient, it is just the opposite. Even though they are aware they feel better, they tend to overestimate what is still missing. Fatigue and pain may be two considerable problems and the road to full recovery may appear to be endless. In this situation it is helpful to look back for a moment: How was I doing immediately after surgery? Six months later? Now? One should focus on the progress that has been made, confident that further progress may ensue in due course.

Question: I have so much anger towards my doctors who misdiagnosed me for years. Even now, I feel like they don't take me seriously. I'm also angry that this happened to me. How can I get rid of my anger?

Answer: Cushing's syndrome is not a disease that is easily diagnosed. The reasons are many (it is complex, deceptive, not well known by many physicians, etc.). Unfortunately, a rapid diagnosis seems to be the exception instead of the rule, yet this is difficult to accept. One may start thinking and ruminating on the time, money, and medical consultations that got wasted with increasing anger and resentment. This however leads to nothing. What is important is that the illness was eventually recognized and treated. Medicine is not what is portrayed on T.V. It is more difficult, complex and, at times, frustrating. We do our best, but our best sometimes is not sufficient. When you start ruminating about the past, tell yourself "stop". Go do something, no matter how trivial it may be. This will help get your mind off of what is past.

Question: I have been free from Cushing's for over two years and most of my symptoms have resolved, however, mentally, I am sill not as sharp as I used to be. It is difficult to explain, but I just feel "off", I am more forgetful, and find myself in a room wondering why I came into that room. My math and spelling skills are also substantially less than what they used to be. Is this normal for post-Cushing's, will this improve more over time, and is there anything I can do to help my "brain power" recover?

Answer: Hypercortisolism is likely to affect cognitive functions. Depression particularly impairs concentration. When both are present, as in many cases of Cushing's syndrome, mental functioning can be affected. When cortisol levels go back to normal and mood improves, once again one would expect a rapid return to normality. However, this is generally not the case. There are also patients who report a worsening of their memory, spelling, etc. after cure of Cushing's syndrome. It is important to consider that the mental function that is most frequently affected is concentration, not memory. You do not remember things because you were unable to pay sufficient attention to it. Regaining concentration requires a prolonged effort. If you simply say "I am not the one I used to be" and stop trying, concentration will never come back.

For example, in Italy, male college students who are unable to pass a required number of exams, have to leave college for military service. For one year, they are generally unable to spend any time studying. When they are back to college, they often have trouble studying again. Their concentration skills seem to have deteriorated. These skills come back only after months of struggles and attempts. Yet, these students are physically healthy and nothing detrimental to mental function has happened to their body. In the setting of Cushing's syndrome, such problems are increased. Concentration can come back, and other cognitive functions as well, but you should keep on trying. Further, one should consider that the brain is extremely sensitive to cortisol levels. If the illness has been prolonged, a readjustment may take place, but is likely to take a long time, much longer than the other parts of the body. Regaining mental efficiency requires application and endurance. Time is on your side, but only if you work on it and try to improve your concentration day after day. Simple things that you can do to help include reading, doing puzzles such as picture puzzles, crosswords, and math puzzles. You might also practice memorizing some of your favorite quotations, or other things that you find interesting.

Question: What can family members do to help a person with Cushing's cope with the emotional aspect of the disease?

Answer: In the acute phase of illness, particularly when depression occurs, patients may view themselves, their future and their relationship with others in a very distorted, pessimistic way. They may be irritable, tense, moody and display overwhelming anxiety, helplessness and hopelessness. A patient once told me, "If I do something wrong, I keep on thinking about it. If I do something right, I forget it immediately". Family members may be important in reminding the patient that these feeling are an expression of their illness, hypercortisolism, and should not be considered as coming from the real self. These feelings will fade away with treatment as will other symptoms.

As to the recovery phase, excessive dependency on family members is not beneficial. Patients should be encouraged to seek their autonomy, no matter how hard this can be at the beginning

Question: Can religion or belief in a Higher Power play a role in the recovery and healing process?

Answer: From a purely psychological viewpoint, which is the only one that is pertinent here, if religion or belief in a Higher Power is a source of optimism, hope and conveys a positive, active, attitude, it can help the recovery process. If the patient, however, perceives that he cannot do anything for himself and help can come only from God (and some religions convey this passive attitude), it may also make things worse.

Editors Note: Dr. Fava is a psychiatrist at the University of Bologna, Italy. He has over 15 years of experience in dealing with psychological aspects of Cushing's syndrome. He collaborates with his wife, Nicoletta Sonino, MD, a leading endocrinologist in the medical treatment of hypercortisolism.

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Fall, 1997

Coping: Depression in Cushing's Syndrome: 'Atypical' or Melancholic?

by Lorah Dorn PhD, RN, CPNP & George Chrousos, MD

From the literature and from anecdotal reports, depression is said to be common in patients with Cushing's syndrome (CS). Certainly, patients with CS know this well. Depression may be seen in over 50% of patients in active Cushing's. In this column we will address the following: 1) What is depression? 2) Is depression in CS different from other kinds of depression? 3) Why is depression different in CS? and 4) What can be done about it?

What is depression?

Depression is not just one disease or one syndrome. There are several types of depression. First, someone can have either "depressive symptoms" or a diagnosis of depression. Depressive symptoms include depressed mood, loss of interest or pleasure, change in weight, change in sleep, fatigue, as well as other symptoms. Second, a diagnosis of depression (Major Depressive Disorder, MDD) is usually made by those in the mental health profession, based on criteria outlined by the American Psychiatric Association's Diagnostic and Statistical Manual of Mental Disorders (DSM-IV). A diagnosis of MDD is made when a specific number of these symptoms occur for at least two weeks or more. In the most strict sense, one could not be diagnosed with MDD if a disease (like CS or hypothyroidism) is "causing" the disorder. Certainly, that doesn't mean that patients with CS are not depressed. We know otherwise from clinical experience and research.

Is depression different in CS?

There are several subtypes of MDD, but we will focus on two that are more relevant to CS. One is melancholic depression, characterized by depressed mood as a feature and loss of pleasure in most activities. There also is weight loss and a decrease in the time one sleeps. The other type is atypical depression, also characterized by depressed mood, but with the ability to react to pleasurable events with a favorable response. Patients with atypical depression show increased fatigue, weight gain, and excessive sleeping; symptoms opposite of those patients with melancholic features. In the general population, melancholic depression is the most prevelent. We conducted a research study on 33 patients consecutively admitted to NIH for treatment of CS, evaluated each of these patients for depression while their CS was active, and at various time points following corrective treatment. Several important points emerged from this research.

As shown in Table 1, the majority (66.7%) of Cushing's patients clearly demonstrated psychiatric symptoms at some time during their illness, while the number of patients with no diagnosis of psychiatric symtoms was much lower (30.3 %). Our research also showed that the most common type of psychiatric disorder in patients with CS is atypical depression. In the 33 patients with active CS in our study, 17 or 51.5% had atypical depression.

Appoximately 17% of these patients also exhibited symptoms of both atypical and melancholic depression, while one patient with CS exhibited only melancholic depression. Another 29.4% of these patients had other diagnoses, such as panic attacks, anxiety, and drug and alcohol abuse.

Why is depression different in CS?

From our research and the synthesis of others, we have surmised that depression represents either over- or under-arousal of the stress system. In a simplistic sense, the stress system includes many neurotransmitters and hormones from the brain, pituitary gland, and adrenal gland that work together to help people respond to physically or psychologically stressful situations. Some of the changes that occur during arousal or activation of the stress system, include changes in CRH (corticotropin releasing hormone). A part of the brain releases CRH, which then acts on the pituitary gland to stimulate ACTH release. In turn, ACTH acts on the adrenal glands to increase cortisol production.

In melancholic depression, the stress system is overactive and CRH is increased. This increase may well bring about some of the symptoms of melancholia. In atypical depression, like in CS, there is under-arousal of the stress system and lower CRH. Due to increased ACTH and cortisol, patients with CS do have lower CRH (measured in spinal fluid). However, there has not been a study that has simultaneously measured CRH and depression in patients with CS. It is also important to remember that while CRH plays a role, depression most likely is not "caused" by just one factor.

What can be done about depression in CS?

No matter what kind of depression a patient with CS has, it should be treated. It is important that the patient be evaluated and followed, from someone in the mental health profession. Helpful therapy may include individual or group therapy, but sometimes antidepressants may also be necessary and should be prescribed by a psychiatrist. The therapist should also maintain close contact with the endocrinologist so he/she understands the disease and treatment from an endocrine perspective. Treating depression in this instance, is a team effort involving the patient and family, the mental health therapist and the endocrinologist. Patients and families should ask questions about the therapy and be informed about what to expect with a medication, and when it should begin working. Sometimes a different anti-depressant will need to be prescribed because the same medication doesn't always work in the same way for everyone. So, patients and families will need to keep the therapist informed of progress, as well.

Editor's note: Lorah D. Dorn, PhD, RN, CPNP is an Assistant Professor of Nursing and Psychiatry at the University of Pittsburgh. Dr. Dorn conducted research on Cushing's syndrome and depression in conjuction with Dr. George Chrousos, MD, who is the Chief of Pediatric Endocrinology at NIH in Bethesda, MD. This research was published in Clinical Endocrinology, Volume 43, pp. 433-442, 1995.

Table 1: Psychiatric diagnoses of 33 Patients with Cushing's Syndrome
	n	%
Diagnosis before Cushing's syndrome	6	18.2
Diagnosis during Cushing's syndrome but prior to admission at NIH	15	45.5
Current diagnosis when admitted at NIH	18	54.6
Total: during Cushing's or at NIH admission	22	66.7
No history of diagnosis	10	30.3

Row n's and percentages represent the number of patients out of 33 at the specified time points. Therefore, the percentage column does not add up to 100.
This table was reproduced with permission from Blackwell Science Ltd.

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Spring, 1998

Coping: Depression after treatment of Cushing's Syndrome

by Lorah Dorn PhD, RN, CPNP & George Chrousos, MD

In the fall issue of the newsletter, we addressed depression in Cushing's syndrome (CS). The focus was on subtypes of depression, how different subtypes might be expressed symptomatically, how they might be biochemically different, and what treatment may be effective for depression in CS. This column will focus on our research findings on the course of depression following the treatment of CS.

Although for patients with Cushing's syndrome, a "cure" can be obtained immediately through surgery, we know that the process of returning to a healthy state takes some time. For example, the return of functioning of the hypothalamic pituitary adrenal (HPA) axis, may take up to a year and patients remain on glucocorticoid replacement until that time. Resuming normal psychologic functioning after correction of hypercortisolism also appears to be a lengthy process. In our longitudinal study of 33 patients with CS, 54.6% met diagnostic criteria for a psychiatric illness before their treatment. The majority of those had atypical depression but there also were a few cases of hypomania, panic anxiety, or drug and alcohol abuse. At 3-months post- treatment, 53.6 % of the 28 returning patients met criteria for a psychiatric illness. Most were diagnosed with major depression (MDD) (32.1%) but some had atypical depression or anxiety disorders. Importantly, three patients reported being suicidal. At 6-monthspost-treatment, there were fewer psychiatric diagnoses (36%). Of the 25 returning, 32% had atypical depression. Three patients met criteria for MDD and one of these reported being suicidal. One year following treatment for CS, 7 (24%) of the 29 returning subjects still met criteria for a psychiatric illness. Again, atypical depression was the most common. One patient continued to report being suicidal. Thus, the general picture of the psychological profile of CS patients after correction of hypercortisolism is one of improvement. Across the year, there was an improvement in moods and feelings by self-report checklists and also a significant decrease in the number of patients with atypical depression. Interestingly, across the study, 4 patients who reported no psychiatric disorders before or during CS, developed a psychiatric condition after treatment for CS and during their recovery phase.

To look for recovery of the HPA axis, an ACTH stimulation test often is done during the convalescence. The ACTH test shows if the axis is returning to its normal state with the goal being discontinuation of glucocorticoid replacement therapy. A normal cortisol response was obtained by 13.6% at 3 months, by 21.7% at 6 months, and by over 50% at 12 months post- treatment. We thought that whether one had a normal cortisol response might be related to better psychological functioning. This, however, was not the case. There was no significant relationship between recovery of the HPA axis by ACTH testing and better psychological functioning. We do think that having more patients in the study may provide more information about this relation.

To look at the relation of recovery of the HPA axis and psychopathology in another way, we asked the following question: Is the actual spontaneous morning cortisol level of the patient related to psychological symptoms? Using standardized checklists, we found that at 3 months post-correction, there was no relation between cortisol level and psychological symptoms. However, at 6 and 12 months, having a lower morning baseline cortisol (before the ACTH stimulation tests) was strongly related to having more psychological symptoms. Also, 6 months and 12 months after correction of hypercortisolism, patients with higher cortisol levels felt more vigorous. It is important to remember that just because there is a relation (correlation) does not mean that cortisol is causing this relation.

Why might psychopathology remain even after correction of hypercortisolism and why might new psychopathology appear? To answer this, we can only speculate. Further research can provide more conclusive evidence. It may be that the CRH neuron is the last part of the axis to recover and CRH, rather than cortisol, may be responsible for mood disturbances. Also, it is too simplistic to think that only one biological factor contributes to a behavior. Most likely it is multiple factors such as several hormone systems acting in concert and factors such as social support or stressful life circumstances.

What can be done about new or continued psychological problems after correction of hypercortisolism? We would reiterate our suggestions from the previous column stressing the importance of being evaluated and followed by someone in the psychological profession. Your therapist and endocrinologist should have continued contact with each other (as well as with you), in order to adjust therapy as necessary. Helpful therapy may include both supportive psychotherapy and appropriate medications. We would like to stress to patients and family members, the importance of recognizing psychological problems in patients with CS, not only before treatment but after correction of hypercortisolism as well. The fact that some of our patients developed new psychological problems such as panic attacks or being suicidal is worrisome, if not identified and monitored.

Further information on this study can be obtained in: Dorn, L.D., Burgess, E., Friedman, T., Dubbert, B., Gold, P.W., & Chrousos, G.P. (1997). The longitudinal course of psychopathology in Cushing syndrome after correction of hypercortisolism. Journal of Clinical Endocrinology and Metabolism, 82:912-919.

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July, 1998

Coping: Cushing's and Friendship

by Anna Maurer

I'm not a psychologist, a psychiatrist or a therapist. I don't have any formal training, and I certainly don't have any experience with being diagnosed with a rare, confusing, absolutely frustrating condition. When my best friend, Mary, told me she was diagnosed with Cushing's, my first thought was "thank goodness - there is an answer!" My second thought was "so, exactly what is Cushing's, ACTH, cortisol etc.?" and we've never looked back. Early on, Mary told me how some Cushing's patients lose their friends because of their illness, retract into themselves and are left without a support network, or a close friend to help them through their ordeals. Mary tells me I really helped her deal with it and that perhaps if I shared how I was a friend, it might help others who know and are friends to Cushing's patients. Some people can't deal with illness, as it reminds them of their own mortality, and Cushing's adds a level of frustration not often seen. It can take a lot of work to put friendship ahead of fear and frustration.

I've known Mary for more than seven years now. Her Cushing's was full blown by the time we met, and I've lived through almost all of her medical problems, except the broken hip that never healed and resulted in a total hip replacement at age 30. She and I "clicked," and we became close friends. So what did I do to help her? Basically, Mary talked, and I listened, as the "healthiest unhealthy" person I know went through the most difficult period of time I have ever seen. I listened during the hyperactivity, the sleepless nights, the excessive spending, the overwhelming work stress, and the stubborn weight that refused to move, despite rigorous diet and exercise. I shared in the frustration when no medical tests revealed why she didn't heal, or couldn't sleep more than two or three hours a night, or explained any of the other symptoms. I listened during the skin graft from a simple cut, and I was there for the lung embolism and the stress fracture that broke her leg. I listened as doctors were unable to diagnose Cushing's, and who thought her condition was something she could control.

And I listened, as Mary told me about Cushing's. I've listened as Mary has gone through the hard times after diagnosis. Pituitary surgery, radiation, finding out the tumor wouldn't die easily, the broken arm, the decision to have her adrenal glands removed, a serious post-op infection that put her back in the hospital, awful medication side effects, the struggle to manually regulate her cortisone levels, pronounced mood swings and the sheer frustration of being unable to clearly see the end of the journey. I've also listened to her fights with her health insurance carrier, and we've both been tempted to physical violence by incompetent labs that lose or mess up tests. But I've also listened as the weight seemed to melt off, as the hyperactivity disappeared, and as sleep took eight, or more, hours. I've listened as everyday there seem to be new treatments discovered and new advances made in understanding Cushing's. So what else did I do?

I also listened and I talked when Mary DIDN'T want to talk about Cushing's. There were days when she, or I, or both of us wanted to forget about this mysterious, maddening, nerve wracking condition for a while. Cushing's is a 24 hr a day condition, but that doesn't mean your interest in anything else, or your ability to talk about non-Cushing's matters atrophies. Being able to carry on long conversations where words like "Cushing's," "doctors," or "the lab lost my 24 hr test again," never appeared, kept us from burning out on talking about Cushing's. We needed to step back from Cushing's and talk about something else, like my tendency towards irrational obsessions, our shared interests in gardening and crocheting, or any topic in the world we tend to wander to. By not always focusing on Cushing's, we are able to handle the times when we needed to.

While I listened, I also sympathized and supported. I let her take the lead when we talked of Cushing's. I didn't pass judgement. I believed what she told me and never believed that it was "all in her head." I didn't minimize the suffering or frustration that Mary was going through. I saved my frustration with this disease and what it was doing to my friend, for the incompetent labs, arrogant doctors and short-sighted HMOs.

I also think that we learned together. We quickly learned that Cushing's is so unknown, that every week the doctors are uncovering something new, so what she tells me one week, may be reversed the next week, and off in another direction the third! That's one thing that has been so difficult about this - just when we expect clear sailing, Mary has an unexpected reaction to a new medication, a new treatment doesn't do what it is supposed to do, OR tests come back with confusing results. At first, we thought Mary was just an unusual Cushing's patient, but since her involvement with CSRF, and from attending the conferences, we found out that unusual is normal! We quickly learned to be prepared for unusual side effects and unanticipated symptoms. I think we both supported each other, as both Mary and I were always so hopeful that the next step would be the solution. With friends, it sometimes happens that one is upbeat when the other is down, and this balancing act has kept our friendship strong.

While sometimes I did advise, I never demanded, and I recognized that I could do little else, but listen. I couldn't fight this battle for her. It was HER body the tumor grew in. It was HER body that suffered under the overproduction of cortisol for 10 years before it was diagnosed. SHE was the one suffering from the side effects of the medication, and would be the one to suffer during the manual regulation of her cortisone levels. I couldn't demand that Mary follow this doctor's advice, or attempt this treatment from that doctor. I wasn't the one who would have to live with the results.

So how have I survived? Cushing's hurts me as well. Make no mistake. I never, ever, EVER, forget that this is Mary's "show." But because I care for Mary, I've been affected by how she's been affected during the course of this disease. It hurts when she would tell me about what side effects the different medications would have, and she would have to decide each week whether she wanted to be nauseous, sleepy, starving, or have her bones hurt so much she cried. It's painful when one of the smartest people I know talks about days when her short term memory is gone and her reasoning skills have flown out the window. It's hard when your best friend talks about having brain surgery or her adrenal glands removed. It's difficult to deal with when she explains her emergency cortisol, and how to use the syringe and medication. It's tough when she talks about severe moods swings that have no purpose, except that they are the result of Cushing's. It is confusing trying to sort out one test or medication from another. I want to help, but there isn't much I can do regarding her treatment, except maybe strangling the incompetent lab technicians that mess up or lose the 24 hr tests! While parts of this have been difficult for me, this experience has made me appreciate Mary's strength, and my own, and that's a wonderful addition to our friendship.

We did find a way for me to help - even when I felt I couldn't. I listened, I supported, I believed, I didn't judge, and I cared enough to stay close. I picked up the phone when Mary didn't.

Anna Maurer

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February, 1999

Living Well With Health Challenges

by Gayle Heiss

THE ISSUES AND FEARS OF ILLNESS
Part of being alive is accepting that things are changing all the time. Being fully alive requires responding flexibly and creatively to the changes. Life's struggles usually come from reacting rigidly and trying to keep things exactly the same. Some of the changes are given a name -"illness" or "disease." When long-standing or chronic, we are faced with one of the greatest challenges to our ability to accept change. The threat of physical vulnerability dramatically brings up two issues we all must deal with at some time in our lives: facing who we are when it is not possible to continue in our familiar roles and our own mortality.

Facing illness, regardless of whether it is chronic or temporary in nature, means finding a way to live one's life so that our life is meaningful to us and to others in spite of the changes. Facing illness also means confronting fears of the unknown and discovering the inner strength to cope with all the "what ifs."

The source of that inner strength comes ultimately from maintaining perspective, especially after tangling with all the worst fears - leaving one with the grateful feeling that whatever I can do has deep meaning and joy. That sense of appreciation is always there to draw upon, no matter what. Another name for it is faith.

When an illness touches us personally, we feel our own vulnerability as we discover the error in our assumption that things always happen to someone else. Within families and in other close relationships, people often make an unspoken and unconscious agreement with each other to guard against exposing their vulnerability. An illness insists that our common vulnerability be recognized. The integrity of the relationship then requires that the original agreement be replaced by a new one that promises mutual acceptance of each other's susceptibilities as well as strengths.

Another change that comes with an illness is that the heart opens in a way it perhaps has never opened before to other people's pain, especially when associated with an illness. This rich connection with others increases even further that perspective that leads one to be so thankful for all there is rather than grieve over what isn't, used to be, or might have been. Ironically, there wells up a feeling of being more, rather than less, fortunate than those who are in good health, but whose hearts are closed and perspective narrow.

RESPONSES TO ILLNESS
Coping with illness clusters around four kinds of responses. These responses are more likely to fluctuate and even be simultaneous than to follow any sequential or timely progression.

1. Give up, experiencing only loss - of certain particulars in life as well as of an enthusiasm for life in general.

2. Make a statement to the world by continuing on with all the same activities and meeting the same standards as before. Act as if nothing has changed, in spite of the added strain that means for the body at a time when it needs extra care.

3. Create a full-time job of curing all physical symptoms, investigating all that traditional and alternative healing methods have to offer, even if it means leaving little time and energy for other things - like focusing on the possible positive aspects that might grow out of a redirection in life or using the increased awareness and sensitivity to develop creative options for leading a full, rich life that doesn't depend on a particular kind of body.

4. Accept the challenge of the present physical limitations and learn from the lessons it offers about attachment, letting go, control, and vulnerability. They are lessons we all face all the time; they are just more poignant when they come disguised as an illness. In that frame of mind, set priorities. Find the balance, being open to all the possible ways to heal the body as well as to all the present joys and yet undiscovered ways of living a meaningful life should some of the physical symptoms remain, in spite of the best efforts. This last response is what "healing" means in its fullest sense: healing the wound left by the loss of the invulnerable body as well as healing the disease or symptoms. We do have control over the first kind of healing; the second is sometimes less of a certainty or can be a long time in coming.

RESPONSES FROM OTHER PEOPLE
Making the necessary changes required because of illness - giving up familiar roles, reordering priorities, or generally changing patterns - is often as difficult, if not more difficult, for those around someone with an illness as it is for that person.

Frequently others need their loved ones, friends, or co-workers to quickly heal their bodies so they can go back to being exactly as they were before. Exploring new avenues allows a person with an illness to adapt to the circumstances. Others may find confusing and disturbing the adjustments that requires in their relationships with those individuals.

People can imply that not continuing on with usual activities is giving in to the illness, focusing too much on the body: "Perhaps a more positive attitude would help." They do not realize that a positive attitude comes from discovering those things that are appropriate now, not from clinging to past pursuits, no matter how difficult and frustrating the effort. Perhaps having no idea what an on-going illness feels like, they overestimate what "sheer will" can accomplish. Those who have the energy of a healthy person don't have to reorder priorities as one does who experiences the indescribable fatigue that accompanies illness, nor do they live with the uncertainties that an on-going illness brings - never being able to count on feeling well enough to easily do what has been planned.

It can create an added strain to find a loving way to respond to seemingly endless suggestions from people who may understand very little about the particular disease process occurring. Few people stop to think that theirs might be just one of the many suggestions offered that day, all of them loving, well-intentioned, and often convinced that theirs is the one right method. Indeed, one would have to be in perfect health to be able to undertake the healing program others have in mind.

Others also seem to get a little nervous if your path (as mine happens to be) is following your intuition, listening to the still small voice within. For it requires structuring some solitude, having discipline, and taking the responsibility for creating in your own environment and on a day-to-day basis the elements of a healing retreat (including a healthy diet, daily exercise, and your own personal spiritual practices). There are no outward signs of a program and no teacher, except ourselves.

There are many people, places and programs that can provide support and can help give us the strength to make the necessary changes, but we are the ones who ultimately are responsible for those changes. No one else can do it for us. No one else can crawl inside us; we know better than anyone else what we are feeling and therefore can judge best what is helpful.

When faced with a physical illness, the most effective therapist is the body, an ever-present provider of immediate feedback more powerful than words, reminding us that only by accepting things as they are will we come to see life as the gift that it is rather than as a struggle.

Connections between people soften the feelings of isolation and discouragement that can erode the will. The willingness to reach out and accept generous offers of help allows people to show their love and concern, just as we would want to do for a friend of ours in a similar situation. Indeed, finding increasing ways to support each other is our most meaningful role in life and on in which everyone can participate.

FIRST STEPS TOWARD HEALING
The challenge in designing a healing program is to find a balance, remembering that the goal is to restore a healthy outlook (which requires acceptance, then creative change) as well as a healthy body. Be open to anything that might improve or cure the physical symptoms; at the same time, be selective. Since there is precious little time in life (true for all of us), why make the sense of self and satisfaction in life contingent on getting the body back to its previous state. Welcome the perhaps long-overdue task of examining whether present life style and day-to-day priorities are congruent with personal values and rhythms.

For example, I always loved my work and continued to love the idea of doing that work, but refused to acknowledge that it was no longer a positive experience because physical limitations were getting in the way. I simply didn't feel well enough, enough of the time, to do it with ease or to meet my own standards. It left me feeling defeated and too drained to do anything else I enjoy.

When I could no longer continue, I gave up my job and entered what seems to be a necessary "transitional" stage, where previous roles and, to some extent, sources of self-esteem are not yet replaced by new ones.

THE TRANSITIONAL STAGE
Changes are not linear; we rarely can go directly from A to B. This is the time to just "be" - adjusting activities and pace according to the body's requirements rather than to other people's agendas or expectations. It's the time to explore which of the usual activities are still comfortable or to consider what adjustments might be made to continue some, if not all of them. It's the time to make a priority of doing things that are nurturing and absorbing, that leave one feeling focused, whole, and productive. Perhaps these are on-going pursuits that may have been put aside, especially since health problems began. It might mean replacing past interests with new ones that are more appropriate now. There are so many ways to enjoy life without making the body an enemy.

Living in that transitional stage requires faith, but I found it also provided me with the opportunity to return to those things that have always been sources of my faith - gardening and music. By being totally able to lose myself in the process of caring for plants or making music, I wind up with the perspective that my own personal drama is just part of the natural rhythms of something much larger.

In the garden I recognized that I am rather like a plant that has been pruned. Now dormant, the plant looks bare and empty; but energy is circulating in new buds that will emerge with fuller and more balanced growth. And who knows in what directions it will branch out?

At the piano I appreciated that just as the plant needs to be pruned, one note has to be released before one can fully experience the sound of the next. Holding down the previous key while subsequent notes are played can create a beautiful harmony, but there are times when clarity is necessary; the pure sound of each progressive tone is a reminder that each small step one takes has its own reward.

Each of us can find our own path to building our source of inner strength; knowledge that is useful for a lifetime, illness or not.

A TIME FOR REASSESSMENT
Becoming better acquainted with the vitality of the person inside is what ultimately releases us from some long-standing, automatic, and unexamined attitudes and expectations. Self-imposed or externally-imposed, we come to accept certain criteria as positive and then judge ourselves according to our fit with the mold we've chosen. Some of the "growing pains" of an illness come from the effort it takes to extract ourselves from that mold. But, the rewards for the effort are an extended sense of self and increased flexibility, a more solid self-image that is less reliant on external standards.

People often perceive and judge themselves and others as "healthy" or "sick." When first presented with a diagnosis, we find the news startling: "I've always been so healthy!" But by definition, every person is physically healthy until she/he develops symptoms or an illness. This awareness can act as a buffer to those feelings of defeat and inferiority that arrive with the symptoms and chip away at self-esteem. We are each an individual with a fully developed life and rich personal history before we get an illness. A diagnosis cannot change any of us suddenly into a different person.

One of the major frustrations that accompanies an illness is that the ability to be efficient and adhere to busy schedules is compromised. One can't move as quickly or sustain energy for as long. The familiar "second wind" now may be replaced by a less dependable "second breeze."

However, efficiency and schedules are only tools, means to an end. Sadly, in our culture they have become ends in themselves and can interfere with the quality of life, with our ability to connect with the moment, with a sense of inner peace.

Appreciating this fact makes it easier to feel comfortable about taking a slower pace and longer transition times. In the early stages of my own illness, I expressed my frustration with the statement, "I feel like a Type-A personality trapped in a Type-B body" - seeing my slow-moving body as the obstacle. After some time had passed, my attitudes and habits changed: "Perhaps I've been a Type-B body trapped in a Type-A personality." Now my mind, with its strict agenda, appeared as the culprit.

An uncluttered mind that can embrace the pure and simple is, in fact, opening to the grace that many of us seek in places so remote from ourselves. Savoring the moment doesn't mean indulging in only short-term pleasures at the expense of long-term commitments or enduring values. It means focusing our attention on where we are now.

A PANORAMIC PERSPECTIVE
There is an invisible thread that weaves together the lives of all of us, regardless of physical condition, age, or life style. We share a common desire to touch that nameless source that gives our lives meaning. When we find ourselves in a crisis, it tests our courage and will to engage creatively with the unknown. We are asked to greet the challenges of life with the same intensity as we greet our passions. In the process, we discover the strength of our convictions - our integrity - and hopefully emerge declaring, "In spite of everything, I wouldn't trade my life for anyone else's, no matter how perfect the body living it."

ABOUT THIS ARTICLE: Gayle Heiss has been leading weekly support groups for those with illnesses or physical problems and their families and friends since 1988. Gayle's perspective also stems from her personal experience with Sjogren's syndrome, an autoimmune connective tissue disease. The material in this article is condensed from Gayle's booklet entitled "Living Well With Chronic Illness" (copyright 1988). An expansion of this material can be found in her book which can be ordered through your local bookstore or directly from the publisher:
Finding the Way Home: A Compassionate Approach to Illness
QED Press, 800- 773-7782, ISBN 0-936609-35-4 , 1997 $24.95

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November, 1999

Quality of Life Following Treatment for Cushing's Disease

by Julie Gumowski, RN, BSN
Nurse Specialist
NIAID
National Institutes of Health

As an endocrine nurse who took care of all phases of Cushing's disease/syndrome patients, from confirming their Cushing's diagnosis through treatment options, I have often wondered about their life at home years after they were treated for their Cushing's disease (CD). What symptoms most influenced their life when they had Cushing's? Did their symptoms decrease after treatment? How were they currently doing? Was there any information they needed about post CD treatment expectations? To help answer these and other questions, I applied for and received a nursing grant from the Endocrine Nurses Society (ENS) to study quality of life (QOL) and CD. The following is an excerpt from my presentation at the ENS meetings held in June 1999 in San Diego, California. More specific information and data will follow in a future scientific publication. Special thanks to my collaborators, Dr. Tonja R. Nansel, NICHD, and Dr. Lynnette K. Nieman, NICHD, on this study.

While many of the symptoms of CD adversely affect QOL, few studies formally evaluate this aspect of the disease and its improvement after surgical cure. Transsphenoidal resection of ACTH-secreting tumors induces remission of CD in most patients. We hypothesized that QOL would be diminished in active CD and would improve after treatment as CD symptoms resolve. Health-related quality of life for our study is defined by one's functional status, as well as physical and mental well-being. Current professional or lay literature does not address QOL and whether it improves after treatment for CD.

We developed a QOL questionnaire using a modification of the SF-36 tool. The SF-36 tool is the gold standard for QOL as it is a validated and reliable tool. It is a comprehensive, short form with only 36 questions. This tool measures health status and outcomes from the patient's point of view The SF-36 health survey measures 8 health concepts, which are relevant across age, disease, and treatment groups.

These health concepts include limitations in physical activities, limitations in usual role activities because of physical problems, bodily pain, general health, vitality (energy and fatigue), limitations in social activities because of emotional problems, limitations in usual role activities because of emotional problems, and mental health. Eight health scores as well as summary physical and mental health measures are compiled from the survey and can then be compared to both the normal as well as certain disease populations.

We mailed a post-treatment follow-up survey to 415 patients who were treated at NIH for CD from 1982 to 1991. It was self-administered and included demographics; recurrence of Cushing's questions; treatment outcome questions; CD symptom checklist prior to treatment and now; and the SF-36 survey with added questions. Our CD patients were from all over the world as well as from all across the United States. So as to not jeopardize future publication of specific results, I will summarize some of our findings briefly here. I will refer you to read the data when it is published in an upcoming journal. In general, slightly more than one-half of the patients thought they were currently cured and that their current QOL was "pretty good or very good". Before treatment, patients reported a mean of 21.9 symptoms whereas after treatment, patients reported a mean of 8.4 symptoms. Weight gain and fatigue were the most common symptoms both before and after treatment. Facial hair and weight gain were the most bothersome symptoms both before and after treatment as well. Patients also reported unclear thinking and an inability to work as bothersome symptoms. We compared our treated CD patients as a group with patients who have high blood pressure, diabetes, and congestive heart failure and to a few current Cushing's patients with active disease. In regards to physical functioning and physical summary scores, the treated CD patients in general do better than the congestive heart failure patients but not as well as the general population. Our CD population compared favorably to all groups in the mental summary scores.

As a nurse, I am very interested in learning what information CD patients would have liked to have known prior to treatment. Many of the patients shared their thoughts with us. Length and preparation of recovery time, inability to lose weight, and post-operative pain were the most common themes. Therefore, more patient education on what to expect could be expanded in both our pre-operative and post-operative teaching.

Since there is so little published information regarding the patients' perspective and CD, we need to be aware of their point of view in helping them cope with their CD. I thank all of the patients who participated in our study. More research work needs to be done in the future. As one patient wrote, "The quality of life does not instantly return once your cortisol level returns to normal. It takes work to get there. Please explore that in your study."

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April, 2000

Coping: Psychologist and Cushing's Patient:

by Dr. Jennifer Kirkland

I thought it was just stress. I was in graduate school getting my Ph. D. in clinical psychology and helping others deal with the emotional aspects of life. In my mind, going to school full-time, holding down two jobs, working on a dissertation and trying to maintain a social life were just hard to juggle. Living off of 5 hours sleep a night seemed normal. When other things started creeping up, I still thought it was stress. Based on my training, I tried to manage it that way. I'd like to share with you what I found useful during this experience, but first, the rest of my story since I think that telling your story can be part of the healing process.

Early on, the most disturbing symptom was the moonface. I even called it that. I went on vacation for a week and didn't exercise. I gained five pounds - all in my face and neck. When I returned, I found I couldn't get back into running and lifting weights. When I ran, my heart rate went up to 180 and stayed there for hours. Then my hair went frizzy. All of the sudden, I started feeling like disaster was just around the corner. All of the time.

Since I had chosen this life, this profession, I just kept going. I tried to cope by using a number of techniques that I usually suggested to patients. I enacted the healthiest lifestyle possible. I ate my vegetables, drank water, walked instead of ran, cut out caffeine, sugar, chocolate and alcohol. Mega doses of protein drinks slowed down that panicked feeling in the morning. When I started having overwhelming menopausal symptoms at age 30, I dabbled in herbal remedies. Black kohosh and Valerian root helped keep me from going into face flushes and sweats by day. But at night, every night, I'd awaken at 4:30 AM like I'd been struck by lightning. I only went to one doctor that first year. Being a student, I had no health insurance, so my parents took me to doctor friend of theirs who told me I should diet more and realize I wasn't getting any younger.

During year two, I did my dissertation and completed my pre-doctoral training. By then, I realized I had to work on myself spiritually if I was going to get through it. I studied more about stress management and practiced the techniques faithfully. I learned to live in the moment and clear my head of the 50 things that ran through it constantly. I focused on the moment, practiced deep breathing and prayed when I felt the sky was about to fall.

My self-esteem started getting lower and lower. It didn't matter how hard I worked. I saw more and more things I had to do. I became a neat freak, and had to get up an hour earlier to clean before I left the house. It went beyond perfectionism. But I always looked in the mirror and cried when I saw that moon face staring back at me.

Year three began the descent into the worst year of my life. I started my postdoctoral training at a well-known HMO hospital working as a neuropsychologist, someone who specializes in working with brain injury patients. My supervisor and I were the only neuropsychologists for a region of three million insurance members. I was working 50-60 hours a week and getting paid for 40 (at $10/hr). I also worked weekends to make ends meet. Soon I found myself using many memory crutches, just like my patients. By that time, I was so strung out, I had no ability to remember anything. I kept a small notebook with me and jotted down everything - things to do, people's names, phone numbers, conversations. My voicemail was always jam-packed and luckily, the receptionist kept track of my appointments. I triple checked all of my documentation before I put it in people's charts.

Since I also got health insurance, I went on a quest to figure out what was going wrong with me. It wasn't until I was ready to file a stress claim against the hospital that they found it. I showed a nurse-practitioner the before and after pictures of me as a testimony to how much my job had taken its toll. She said- "that's not your job - that's Cushing's !" I ran back to my office, got on the internet and researched and checked out every endocrinology text the hospital had. For a week, I, the doctor of the brain, dealt with the possibility of having a brain tumor!

Luckily, being "Dr. Kirkland" allowed me to pull some strings. I got access to my lab results before my endocrinologist did. I kept working at the hospital so I could get the information first. I still remember my boss' shock as he caught me putting my pee jug back into my ice chest at work. Thanks to the HMO environment, it took two months of testing to confirm a left adrenal gland tumor. My cortisol levels started out at 442 and rose to 716 before the end. By that time I succumbed and quit trying to cope so much. I started gaining and gaining weight. Every afternoon I'd get the stomach popping out and throbbing. I gained a total of 22 pounds despite the struggle to diet and exercise.

I also knew I was getting crazy. I'd fight impulses to buy things and drive to faraway places. When I returned from work, I'd put away my car keys and only walk places. I once walked 4 miles one way to rent a video. I talked on the phone with friends and tried to make sense of it.

My mother was there for the surgery, as well as my friends. My boyfriend had long since gone. They were all well-meaning, but no one was prepared for the aftermath. I withdrew from everyone. My endo actually suggested I go cold turkey from hydrocortisone two weeks post-surgery. Stupid me tried it and ended up in the emergency room, half dead, five days later. If a friend hadn't dropped by when I started throwing up, I could have died.

It felt like all the colors of the rainbow went away. I worked 20 hours a week to keep my health insurance, but spent most of my time lying on the couch, in a stupor with my cat lying with me. I spoke to no one. I was a shell of my former self. What got me going was the threat of not passing my licensure exams. I had six weeks to study and it helped me focus and retrain my brain to function without all the cortisol. I think I did so well, not because of the studying, but because I didn't have enough cortisol to eat, much less to get nervous.

I weaned myself off of the hydrocortisone at seven months, but didn't get a clean bill of health until nine months. Even then, I didn't feel "normal", but I could feel myself able to feel again. Now, almost two years later, I'm still learning what normal is. I've been at the extremes of arousal, now it's time to manage everything in between. Physically, I have loss of bone mass and still haven't made it back to the gym. I still have that first 5 pound weight gain, but at least I'm back into my clothes.

Sometimes I wish I had the energy that I had with Cushing's. But now, I have a choice about things. I'm still celebrating that I don't HAVE to clean my house. Consequently, I choose to be a lousy housekeeper these days. I love being able to sleep. I don't keep a notebook anymore - not because I don't forget, but I don't care so much if I do. The world won't crumble if I'm not perfect..

And by the way, rainbows are once again in full-spectrum color.

Editor's note: Dr. Kirkland is a practicing psychologist in the San Francisco Bay Area. You can reach her by email at jbkmail@yahoo.com

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What I Found Helpful and Why

From my story, I hope all of you can see that even a trained psychologist cannot control the stress of Cushing's. I knew about all the techniques, used them, but still I was not normal. While none of the techniques solved my Cushing's, I do think some were helpful in seeing me through Cushing's and recovery.

1. Enact the healthiest lifestyle possible. You don't have control over the Cushing's but having a healthy lifestyle may help you feel that you are doing the best you can.

2. Work on yourself spiritually. Self esteem is difficult to maintain during Cushing's. Realize that as a human being, you are much more than what you can do or how much you weigh.

3. Try relaxation exercises, deep breathing, and focusing on the moment. These may calm you down and help clear your mind by focusing on a specific thing, such as your breathing, or getting your muscles to relax. Focusing on a detailed mental image of something you find pleasing, such as the shape of each individual petal in a flower, its color and its smell, can also be calming.

4. Keep a notebook for memory. Write down things that you feel are important to remember, but recognize that even normal people don't remember everything.

5. Check your accuracy on items that require memory, but understand that you don't have to be a perfectionist.

6. Don't try to cover up memory problems or worry about them to an extreme. Covering up and trying to appear normal consumes a lot of energy and in most cases is not necessary.

7. Try to control strange urges if you really feel you should. Avoidance or removing temptation can be useful. This includes putting away your car keys if you feel you must drive to strange places, or not going to a shopping mall if you cannot control your spending.

8. Withdrawing from others is a typical sign of depression, but can also be associated with just not feeling well or being able to do the things that your friends and family can do. Try to keep in touch with family or friends who are sensitive to your situation. Withdrawing completely leaves one without a support network. Use the CSRF networking list, as speaking with another person who has Cushing's can be helpful.

9. Retrain your brain during and after your recovery. Once the Cushing's is resolved, your memory and ability to concentrate should improve. Part of memory is concentration. You can practice concentration by reading and actually studying. For example, pick an article that you find interesting, spend some time pulling out the important points that you want to remember, and maybe write them down. You will more than likely find your abilities in this area to improve.

10. Discover what your "normal" is. Through the Cushing's, you've probably been hyper due to all the cortisol and during recovery, you are drained because of low levels or withdrawal effects. These are the extremes of arousal. Recognize that it will take some time to discover what your physiological normal really is.

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Coping: Cushing's and Children

The unrelenting struggle of Cushing's is an enormous challenge to face. Daily lives become filled with tests, appointments, fatigue, pain, waiting, etc… The stakes of coping with these challenges become even higher when children are involved. How do we help them cope with the complexities of living with a parent that is ill?

As parents, we are meant to be the caretakers of our children, but what happens when illness occurs and impedes our ability to perform these tasks? In speaking with other Cushing's patients, I found that this issue is a shared concern among us.

Included here are a few quotes from others tackling this problem. Laura states, "I feel like my children are neglected, like I don't given them enough attention/interaction. Most times I am so exhausted that I can't give more." Another mom, Shelly states, "They know that Mom can't do as much as she used to, or be able to stay awake long enough after dinner to even help with their homework, most of the time. I wish I could do more with them, but I just don't have the energy."

Children can react to a parent's illness and limitations in a variety of ways. As Susan, a mother of four, points out with regard to her children, "There are times when they are so compliant and do anything I ask them to. Sometimes they lash out in anger towards me. They are angry that I can't do things with them that other mothers do with their children. They have fear and insecurity. They fear I am going to die and they will have no one to care for them." Other children may cope with their stress through avoidance or somatic complaints.

Jayne, the mother of a 2-½ year old daughter describes how she handles the difficult times. " I always explain things. When I have panic attacks or crying spells, I explain that I am tired, like she gets at naptime and bed time. We talk about Mommy needing to stop for a minute."

Experts say that open, clear communication is the key to aiding children in coping with a parent's illness. We would like to extend a special thanks to The Brain Tumor Society for sharing the following article by Carrie Tredwell, M.A., with us.

Editor's note: The quotes used in this article were generously provided by fellow Cushing's patients/survivors via Cushings-Help.com.

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Children Coping With a Parent's Illness

By Carrie Tredwell

Coping is a highly individual process. What works for one person will not inevitably work for others, and what might get you through one circumstance may not get you through another. We subconsciously and consciously collect information to analyze a situation and select a coping style. Not only do we analyze the current situation requiring us to cope, but we also search our memories of past events to try to understand how to manage each new situation.

What happens when we are not given all of the information that we need to understand a situation? What happens when we do not have any experience that allows us to predict an outcome? Unfortunately, this is the situation our children may face when a parent is sick. Adults may attempt to protect children from stressful situations by masking the truth or pretending that nothing has happened. Children are extremely perceptive and insightful, and they will sense that something is wrong. If children are not told the truth, they will use their creative minds to conjure a seemingly appropriate explanation.

When explaining a parent's illness to a child, use simple, age-appropriate language, giving examples by drawing on emotions and feelings that the child knows. It is important to be honest, and allow plenty of time for questions. When some time has passed, have another talk to make sure that your child truly understood the conversation, as well as to respond to new questions and concerns. Sometimes children do not know the words to appropriately express their feelings. Parents can tune into their children's nonverbal expressions of coping. Temper tantrums, crying, withdrawal, and physical aggression are all nonverbal expressions that children may use to cope with their emotions. Plan activities, such as drawing, playacting, etc., with your child to give him or her an outlet for these feelings.

A change in routine sometimes adds to feelings associated with lost control. Many persons, and especially young children, are much happier when they know what to expect or when they have a "set routine," because it allows them to mentally and physically prepare for a situation. Parents have little control over doctor appointments and treatment effects. However, they can try to keep children's daily routines as consistent as possible. For example, if six-year-old Maria has gone to baseball practice every Tuesday afternoon, but now her mother cannot drive her because it conflicts with treatment appointments, a friend can drive Maria to practice. If Sunday dinners are always at Grandma's then try to uphold that tradition. Not only will you preserve a sense of routine, but you will also provide them with important sources of support. Parents can also develop new routines for their changing lifestyle.

Talk to your child about the different people that they will see in the hospital (nurses, doctors, patients, visitors), what they wear and about their jobs. A number of children's books give parents appropriate words to explain hospitals and doctors to their child, as well as medical play kits that introduce children to medical tools used by doctors and nurses. Call the hospital to ask if a Child Life Specialist is available to give your child a tour of the hospital (there may even be a playroom).

Communicate with your children, allow them to express their feelings, prepare them as well as you can for new situations. Afford them the luxury of routine; allot time to be with them. Above all, take the time to care for yourself so that you have the strength and patience to care for your child.

Editor's Note: Ms. Carrie Tredwell, MA works as the grants manager for The Brain Tumor Society and holds a Master's Degree in Child Development.

Helpful Hints by many CSRF members

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Email: cushinfo@csrf.net