Fw: I'll see if I can find his book at when I get out or call lupus foun gigi*

[Guest guest]

This is very good -- down to earth information!

MM

Martha Murdock, DirectorNational Silicone Implant FoundationDallas, Texas Headquarters

----- Original Message ----- From: ParfumGigi@...

MAM-NSIF@...

Cc: Dowlied@...

Sent: Thursday, April 19, 2001 1:56 AM

Subject: I'll see if I can find his book at when I get out or call lupus foun gigi*

Coping with Lupus with H , Ph.D. By , PhD Moderator Please welcome H. , PhD. is a licensed psychologist who has been in private practice since 1975 and who has, throughout his career, published and spoken widely on coping with physical ailments and other psychological topics.Our topic this evening is "Coping with Lupus." Welcome Dr. ! PhD Thank you.Moderator I would like to ask the first question. What have you found to be the most stressful aspect of a lupus diagnosis? PhD There's probably no ONE most stressful aspect. Each person seems to have their own stressful aspects. It might be the pain, the fatigue, problems with doctors problems with family, fears of the future the list goes on and on.Moderator What are some of the initial reactions to diagnosis and how does an individual deal with them? PhD The initial reaction probably depends on how much the symptoms of lupus were a problem prior to diagnosis. For example, if there was a lot of fear (for example, of cancer), the initial reaction to a lupus diagnosis was probably more of relief. However, if the lupus diagnosis is totally unexpected, the initial reaction of panic would not be surprising. Moderator You have dedicated an entire chapter of your book "Coping with Lupus" to anger. How does one deal with anger? PhD As with your other questions, it's hard to give simplistic answers to such a complex problem. But first and foremost, anger has to be defused. It is an energy that doesn't go away, and can be hazardous to your health if not dealt with. So we work on methods of releasing the anger, such as letter writing (writing to a person who is the target of this anger- but not giving the letter to that person) or improving communication techniques to enable people to better deal with others.wabe_grb_WebMD How do I get my friends and family to realize even though I look o.k. I'm really in a great deal of pain? PhD That's a great question. Persistence is the answer. YOU know the way you feel. If they don't believe you, then persistence is necessary to get your feelings across to them. For example, ask them why you might be "making up your pain". Or ask them why they have such a hard time believing the way you feel if they truly care about you.Moderator Do you think that is the biggest myth regarding lupus: "It's all in your head"? PhD I don't know about it being the biggest myth. But I do know that if people aren't experiencing the discomfort of lupus, they truly don't know what it feels like. For others, it is almost understandable for them to think it's in someone's head- a lot of the symptoms and feelings just don't make sense. But I've worked with enough people with lupus to know that it's real and if the person respects and cares about you they should accept what you're saying. wabe_grb_WebMD How can I be calm with someone who just refuses to understand what I am dealing with? PhD You have to take care of yourself. You CAN'T change anyone else, nor force them to understand what you're dealing with. So if they refuse, then you have to take care of yourself and do your own thing. Hopefully, eventually, they'll get the message and want to learn more about what you're experiencing. But if not, at least you're working to help YOURSELF.ladyg2_WebMD Do you have suggestions for exercising when one doesn't feel like moving? PhD Find a part of your body (even a finger!) that you CAN move, and start with that. In most extreme situations when you really don't feel like it make a promise to yourself as to another time when you WILL exercise, and stick to it!Moderator What kind of lifestyle changes does a person, who has just been diagnosed with lupus, have to make? PhD It depends on the person, and the way lupus is affecting the person. Among the most important changes are learning to pace oneself managing stress, getting enough exercise, not overdoing, following treatment programs properly, etc. But each person is unique and must tailor their own unique approach to living with lupus.Debbie_WebMD Is it possible to get pregnant while having this disease? PhD My answers will be from a non-medical point of view, since I'm a psychologist and not a physician. But based on my knowledge since I've written several books on lupus, it is absolutely possible to get pregnant while having the disease. Most physicians will not want you to try to conceive while your disease is very active, or if you're on certain drugs (such as certain immunosuppressant drugs), but I know many women who have successfully conceived and delivered healthy babies, despite living with lupus.Moderator What role do support groups play in coping with lupus? PhD A very important role. One of the most valuable services of support groups is helping you to feel that you're not alone. You're attending with others who are going through what you are, and understand. We always encourage people to get involved with lupus support groups. You can find groups in your areas by contacting your local chapter of the Lupus Foundation of America.ladyg2_WebMD I have a typical stressful household...kids, dog, noise...some days I can handle everything no problem,on other days I want to sell the house, dog and kids included. How can better handle the stress? PhD Learn relaxation techniques. You don't want to do something impulsive like selling your house, dog and kids (unless you really do!!!). So by learning how to relax, you can learn simple ways to quickly counteract the stress and help yourself to feel more in control. There are many effective techniques that you can learn from books or support groups. My books describe a number of them.Moderator Can you give us a few examples? PhD One technique I developed in the 1980's is called the "Quick Release", which involves the following. While sitting in a comfortable chair close your eyes, take a deep breath, and comfortably tense your muscles. Hold that for 6 seconds. Then with your eyes closed release your breath and muscle tension, and continue to breathe normally and peacefully for about 20 seconds. Repeat that cycle two more times.wabe_grb_WebMD Sometimes I lock myself in the closet and just scream. Can this be considered a form of relaxation? PhD Yes (but not for the people who have to listen!!!- A little coping humor!). Screaming does release a lot of tension- and as such is relaxing.Moderator What about family members of a person diagnosed with lupus? Do you have any tips for them? PhD Coping is as important for them as it is for people with lupus. A disease in the family affects everyone in the family. So family members should be learning which coping strategies can help them. For example, some chapters of the Lupus Foundation have support groups JUST for family members- where they can vent and discuss their own feelings. Family members should be able to continue to do "their own thing", even if they have to make some changes in order to help out more because of their loved one's lupus.wabe_grb_WebMD What sort of things should I do to make this disease more bearable for my family? PhD Improve family communication. That is, by far, the BEST way to make things better within the family. By being able to talk about problems if and when they arise, your family will feel closer, and better able to deal with any of the problems that lupus may create.Moderator Would you suggest a daily family meeting? PhD If all family members agree. Otherwise, even a few times per week can be beneficial.Moderator What do you deal with most in your practice? PhD Do you mean what kinds of problems? What kinds of people? What kinds of techniques?Moderator Yes. Moderator All of those would be great! PhD OK. Let's see- we specialize in helping people deal with medical problems (we have a national reputation for this), and we also help people deal with emotional problems (depression, anxiety, panic attacks), family problems and other day-to-day difficulties. We work with people of all ages, from children through seniors. One of the unique things about what we do is that we're able to help a lot of people by telephone. We use "action-oriented" techniques designed to help people learn how to manage stress through relaxation techniques, guided visualization, and biofeedback, and we use techniques to help people to communicate better and learn how to change negative thoughts to positive ones. Moderator Can you give us an idea what an initial visit would be like? PhD Very comfortable and informal. We give the person coming for the first time a chance to talk about what they'd like to improve, we ask questions about how their problems are affecting them, and we work together to set up a treatment plan. This plan includes determining the goals for our sessions together, and the types of techniques we can use to achieve these goals.Moderator How long does a typical session last? PhD 30 to 45 minuteswabe_grb_WebMD Can I go to any therapist ? PhD There are a lot of good therapists out there. Unfortunately, there aren't that many who understand what lupus is all about. For some people that doesn't matter. For others, an understanding of lupus is critical in helping you in treatment. Each person makes that choice.Moderator Well, our time is about up. Do you have any parting comments? PhD First, I'd like to say that I've enjoyed chatting with you today. Second, the questions I've answered have all been good, important questions. And finally, I hope that my answers have given a clear indication of my belief that there are always things that you can do to live a happier, more satisfying life, despite lupus. Would you like me to give you our web site address and tell you about our free e-mail newsletter?Moderator Please. PhD You can visit us online at www.coping.com. If you'd like to subscribe to our free, monthly e-mail newsletter, send an e-mail to: CenterForCoping@..., and we'll be happy to send the newsletter to you.Mention in the e-mail that you met me in this chat. Thanks.Moderator Is "Coping with Lupus" widely available? PhD Yes- in bookstores, libraries, and through all chapters of the Lupus Foundation of America. In addition, another book I've written on lupus is also available in these places. It's called, "Lupus: Everything You Need To Know."Moderator Thank you H. , PhD. is a licensed psychologist who has been in private practice since 1975 and who has, throughout his career, published and spoken widely on coping with physical ailments and other psychological topics.And thank you to all the members that asked wonderful questions. He's aware of the pain & stress from lupus, sounds like he's very educated on the complications of lupus..yea! gigi