INTRODUCTION WHO PROMISED LIFE WOULD ALWAYS BE FAIR? FIRST, THERE IS THE DIAGNOSIS The first diagnosis was our own Why is it hard for your doctor to make a diagnosis? Helping your doctor help you The best diagnosis is the last diagnosis What does it mean if you can-Yt get a diagnosis Susan-Ys dilemma Remaining undiagnosed Other special problems A few words about cancer Accepting the challenge of change Getting on with your life Consultant glory GRIEVING IS NORMAL Why are we grieving? Our family grieves, too Understanding the grieving process makes it easier The five phases of grieving IN SICKNESS AND IN HEALTH Explaining your illness to those you love Forewarned is forearmed Relationships that function well don-Yt just happen Chronic illness will not correct or hide the problems in your relationship You eventually must tell your partner the whole truth about your illness Chronic illness means never being able to say, -_This is for certain.-" Each of you will adopt new roles New roles have new needs It-Ys OK to be angry: Acceptance is an ongoing, family affair With the right communication skills, you can keep your relationships growing BUT WHO WILL TAKE ME TO THE ZOO? Telling the children about your illness Your children still need to grieve They still need you in your family role Set a good example KEEPING YOUR FRIENDSHIPS GROWING YOUR HEALTH CARE TEAM Which doctor is right for you? What can you expect of your doctor? Criteria for selection What your doctor expects from you Dependency is normal Trust must be earned The issue is compliance Trust is a two-way street Advocating for yourself Be prepared when you see or talk with your doctor Changing doctors Your pharmacist Your hospital team Regaining independence Making daily choices THE CIRCLE OF STRESS, ILLNESS, AND PAIN The circle of stress, illness, pain What is stress? How stress affects your health What you can do to interrupt the cycle COMMENTS ON DEPRESSION -_I-Yve tried, but I-Ym still so sad . . .-" Sadness is normal Types of depression Recognizing the need for help Identifying severe depression Using medicine for depression When to intervene One last word BLESSED ARE THE CAREGIVERS Who is a caregiver? Why is a caregiver needed? The need is infrequent at first The need shifts to full care How does a person become a caregiver? Caregiving by default Understanding the caregiver Sometimes, caregivers feel trapped and angry Stay patient and get comfortable Suggestions for the caregiver Suggestions for the care recipient Making decisions and changes Nursing homes Allow time for yourself RESTING, RELAXING, AND RELATED CONCERNS Reading your body-Ys signals Prepare to rest Resting isn-Yt easy You need to relax, too Try keeping a journal How do you spell RELAX? Sleeping and insomnia Coping with sleeplessness at nighttime Keep a list Solve your sleep problems creatively If you need more help, ASK Relaxation therapy, hypnosis, and biofeedback Incorporate relaxation into your life A WHISPER IN THE NIGHT Sex and your sexuality We need intimacy Is sex important to you? Physical changes occur first Chronic illness presents a new problem: timing Recognizing normal and abnormal sexual changes in men Changes as women age Would pregnancy be a problem for you? Alternatives Asking for help BODYWORK Your feet Knees and Hips Shoulders and elbows Hands and fingers Exercise Diet ADAPTIVE LIVING STRATEGIES Plan every day to be the best day yet Shopping is not impossible Get ready for modifications at home The kitchen Your bedroom The bathroom The laundry room Yard work Modification at work Physical therapy Occupational therapy Adaptive aids for automobiles Aids for the automobile More about transportation Quick and easy recipes PRACTICAL MATTERS What do I do when I meet a person in a wheelchair? Your rights as a hospital patient Financial assistance and health insurance APPENDIX: FINDING HELP Organizations and national offices, United States Organizations and national offices, Canada Products and services Patients-Y and Residents-Y Bill of Rights GLOSSARY BIBLIOGRAPHY Books Pamphlets and booklets Medical journal articles INDEX