We Are Not Alone: Learning to Live with Chronic Illness »

Sefra Korbin Pitzele is Secretary of the National Sjogren's Syndrome Association and serves on the Operations Committee of the Minnesota Chapter of the Lupus Foundation of America. She is co-founder, co-publisher, and Vice President of ADVANTAGE: A Magazine for People with Chronic Health Conditions. She is often the featured speaker at healthcare conferences and on radio and television shows.

-_This is a book about redesigning your life . . . about how to live better, not just differently.-" --Sefra Kobrin Pitzele

We are not alone offers inspiration and practical living strategies to millions of Americans suffering from chronic illnesses s

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 isa 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