Cover_Manual2012_Layout 1 4/1/12 12:39 PM Page 1 From our personal struggles and challenges come our courage and strength. © POSITIVE LIVING BC 2012 HEALTHY LIVING MANUAL • VOLUME 5 Editorial Board Glen Bradford, Wayne Campbell, Paul Kerston, Suzan Krieger, Elgin Lim, Jen McPherson, Chuck Osborne, Adam Reibin, Neil Self Managing Editor Shella Gardezi Design/Production/Cover Art Britt Permien Staff Support Glen Bradford, Wayne Campbell, Paul Kerston, Suzan Krieger, Elgin Lim, Jen McPherson, Chuck Osborne, Adam Reibin, Neil Self Contributors Glen Bradford, Shimpei Chihara, Autumn Chilcote, Susan Craigie, Kristin de Giralamo, Richard Elliot, Jack Forbes, Silvia Guillemi, Marianne Harris, Gwen Haworth, Terry Howard, Sandy Lambert, Karen Leman, Devon Macfarlane, Janet Madsen, Alex Mah, Miriam Maxcy, Lorraine Muehlfarth-Hance, Ruth Marzetti, Parm Poonia, David S., Vivek Sharma, Ashley Smith, Carley Taylor, Soni Thindal, Hywel Tuscano, Krista Vandermeer, Shawn Wakley, Lukas Walther, Gordon Waselnuk, Kath Webster, James Wilton Funding for Positive Living Manual provided by: British Columbia Ministry of Health, Public Health Agency of Canada, AIDS Community Action Program (ACAP), and Vancouver Coastal Health Authority. For additional copies of the Positive Living Manual, 5th Edition, please download online at positivelivingbc.org or email us at Introduction ..................................................................................................1 Newly diagnosed ..........................................................................................2 Emotional, social, and spiritual support......................................................4 Your mental health ................................................................................................................5 Get connected ......................................................................................................................6 What is HIV? ..................................................................................................7 The basics ..............................................................................................................................7 How HIV affects your health ................................................................................................8 Symptoms of HIV ................................................................................................................10 Transmission and prevention......................................................................11 How is HIV transmitted? ....................................................................................................11 Reducing transmission risk ................................................................................................14 Keeping track of your health ....................................................................15 Finding a doctor ..................................................................................................................15 Blood work ..........................................................................................................................17 Treatment options ......................................................................................19 Antiretroviral therapy ........................................................................................................19 Are you ready for meds? ....................................................................................................21 Dealing with side effects ....................................................................................................22 Women and antiretroviral therapy ....................................................................................24 Drug interactions ................................................................................................................24 Clinical trials ........................................................................................................................26 Complementary and alternative medicine ................................................28 Traditional healing systems ................................................................................................28 Hands-on therapies ............................................................................................................29 Mind-body techniques ........................................................................................................29 Energy medicines ................................................................................................................29 Traditional healing ..............................................................................................................30 Medicinal marijuana ............................................................................................................30 Opportunistic infections and other conditions ........................................31 Co-infections........................................................................................................................34 Diabetes ..............................................................................................................................35 Mental illness ......................................................................................................................35 Sexual issues........................................................................................................................35 Issues for specific communities ................................................................36 Legal issues..................................................................................................51 Canadian criminal law ........................................................................................................51 Discrimination and your rights............................................................................................52 Everyday life ................................................................................................54 Dating ..................................................................................................................................54 Family life ............................................................................................................................56 Nutrition ..............................................................................................................................58 Exercise ..............................................................................................................................60 HIV & Stress ........................................................................................................................62 Employment ........................................................................................................................63 Basic needs..........................................................................................................................66 Debt ....................................................................................................................................69 Planning for the future ..............................................................................70 Representation agreements................................................................................................71 Insurance ............................................................................................................................71 Wills ....................................................................................................................................72 Funeral planning..................................................................................................................73 Resources ....................................................................................................74 Glossary........................................................................................................88 Index ............................................................................................................91 dedicated team of your HIV-positive peers and We know the HIV experience is complex. What’s more, Aother HIV care experts designed the Healthy Living your HIV-specific needs and concerns are bound to Manual to empower you to confront HIV head-on and evolve as you navigate life with this virus in the long- integrate it into an active, optimistic lifestyle for years term. Our hope is that you will keep the Healthy Living to come. Manual always close at hand, and refer to it when you face new questions and challenges. Within these pages you’ll find the basics of maintaining good health through nutrition and a variety of physical, Since HIV disease is constantly changing by way of new emotional, medicinal, and alternative therapies. You’ll treatments, theories, and attitudes, so too are the needs find out how to connect to a broad network of peer-driv- of the HIV-positive community. We’ve done our best to en and professional support, whose collective expertise anticipate your most pressing needs in this edition of can help guide you through almost any obstacle. You the Healthy Living Manual, but if we’ve left any of your might also discover that some of your most intimate questions unanswered, please feel free to contact the concerns are common in the HIV-positive community: Positive Living Society of BC (604.893.2200, 1.800.994.2437 or HIV -positive? What now? A message from an HIV-positive friend... ou might be scared, angry, and sad. This is natural – Think carefully before disclosing to anyone else in your Yso was I when I got the news I was HIV-positive. life. Once it’s out, it can’t be taken back, and unfortunately But you’re not alone. Let me tell you about my experi- there is still stigma associated with HIV. However, you ence of being diagnosed and living with HIV. may be surprised at how accepting people can be when you have the courage to share your story with them. You Are Not HIV Despite how you might feel at the time of your diagnosis, If you feel burdened by dealing with your diagnosis by your life is not over. Many people with HIV have faced yourself, you have options. You can speak with a coun- other life-changing circumstances and come out ahead. sellor or psychiatrist, or you can choose to tell a close You can too. You may hear people say “I’m HIV” instead friend or family member. Don’t rush to disclose – when of “I am HIV-positive,” but HIV does not define you or it feels right and safe, you’ll probably know. even describe you. If I must be specific, I usually say “I However, be aware that you are legally obligated to disclose have HIV” or “I live with HIV.” your HIV status to a sexual partner. Read the section on You will love again and be loved. It’s a fact. There are Legal Issues, as well as the section on Transmission and many supportive and compassionate people, both HIV- Prevention for more specific information. positive and negative, who will accept you. People with HIV have casual sex, date, get married, and have children. Medical Advice and Treatment HIV will not keep you from love, friendship, and family. Medically speaking, there is a wealth of hope. HIV-positive people are living long, healthy lives. In fact, many people I can’t tell you with absolute certainty you will live well with HIV become healthier after their diagnosis because with HIV, but I can tell you it’s possible. It may not they become more involved in managing their health. always be easy, but you can continue to grow and be the person you always wanted to be. Medications are important, and there are many to choose from if and when you need them to manage your HIV. Some Disclosure: Telling Someone never go on medication, others need it fairly soon after their Who you tell is entirely up to you. This is called disclosure. diagnosis, while others need medication for periods of time. If you have a partner, it’s important to tell them so they can Everyone’s situation is different and you need the advice of get tested and so you can adopt safer sex practices. Many an HIV specialist. You will need regular blood work to help partners remain in loving relationships after one or both you and your physician manage some of the symptoms of have been diagnosed with HIV. HIV and decide when it’s the right time for medication. 2 Your family doctor may not have the expertise and Many people living with HIV find support in their experience with HIV you need to stay well. Don’t be existing spiritual faith or seek out new spiritual practices. afraid to switch doctors; a good HIV specialist is one of For me, Buddhism has been a source of comfort and peace. the cornerstones of your care. We can recommend doctors For more information, see the section on Emotional, who are accepting patients. See the sections on Your Social, and Spiritual Support. Immune System and HIV, Keeping Track of Your Health, and Treatment Options for more information. Career, Disability, and Creating a New Life Complementary Health, Nutrition, Many people with HIV continue to work in the jobs and Exercise they had before they were diagnosed. In fact, most people Many people living with HIV find alternative and diagnosed in recent years don’t stop working. Others complementary health practices beneficial. I know that choose or find it medically necessary to leave work and exercise makes me feel a lot better. I do what I can, and receive disability from the government or private health even a walk or time on the treadmill at the gym does insurance plans. Some people living with HIV find they wonders for my spirit and fitness. aren’t able to work or struggle to survive on limited incomes. Ask for help, explore your legal options, and Nutrition is crucial for managing HIV – a healthy diet ensure you’re taking advantage of all government support is important, and there are food choices that can help you’re eligible for. The Positive Living Society and other manage HIV symptoms and medication side effects, as organizations have experienced people who can help you well as a wealth of vitamins and herbs that can be useful access services. and powerful. You can even speak to a nutritionist or dietician with expertise in HIV. Many people, including me, have found that HIV was the catalyst for creating a life filled with more joy and The Positive Living Society of BC and the Friends for Life peace than ever before. People living with HIV change Society offer resources and even free treatments in comple- careers, go back to school, explore volunteerism, and mentary health practices. See the sections in this guide on take the time to explore their options and fill their time Complementary and Alternative Medicine, and Everyday with things they love to do. Read the Employment and Life, which includes advice on nutrition and exercise. HIV section of this guide for practical advice. Mental Health, Social Support, You’re Not Alone I have lived with HIV for 12 years and in many ways, and Spirituality I’ve never felt better. In other ways, the grind of Good mental health is important to living well with HIV. monitoring my health and taking medications can really Whether you lived with depression or other mental ill- get me down. I’m tired a lot of the time, and there are nesses before your diagnosis, or need help after diagnosis, days I just can’t make it out of bed. But everyone has find a professional to talk to. Many mental illnesses can be challenges they deal with on a daily basis, whether it’s managed with medication. I have lived with depression for HIV or something else. Don’t be afraid to reach out: ask much of my life, long before my HIV diagnosis, but it was for help and use the resources available. You deserve a testing positive that led me to find treatment. healthy and happy life filled with achievement, love, joy, Good social support networks are another essential part and peace. With a strong personal commitment to your of your mental health and living well with HIV. There own health and self-worth, as well as some help when are support groups throughout the province. Go ahead you need it, you can have it all. and date: use online dating sites or meet new people at David the bar or other social settings. Stay involved in activities you love and seek out activities you always wanted to try. You can do anything your health and stamina will allow. 3 Emotional, social, and spiritual support HIV-positive diagnosis is an emotional shock. The important thing after an HIV-positive diagnosis is AnYour world is jarred and, when you can think to give yourself time to get back on your feet and start again, you react with: “This can’t be happening to me!” or thinking clearly. Often, a good first step is to talk about “My life is over.” Your reaction is to be expected. Society your status with someone, be it a friend, partner or in general is not very knowledgeable about HIV and it’s a counsellor, when you are ready. However, consider care- common myth that “nice” people don’t become HIV- fully who this person will be. Choose someone you positive. As a result, there is still a lot of stigma attached believe will support you, but keep in mind that not to it. But each day people just like you, from all back- everyone close to you will react as you expect. It may be grounds and social groups, are being newly diagnosed. better to select someone who isn’t totally integrated into 4 your life as your first confidante just in case things don’t and friends. Other people experience irritability, constant go as planned. worrying, sadness, mood swings, insecurity, resentment, guilt, inability to concentrate, burnout, or poor concen- tration. The newly diagnosed are particularly vulnerable Your Mental Health to depression, which can have long-term effects on all We usually take our mental health for granted and just aspects of life. assume that it looks after itself. But, like our bodies, our minds need care and supportive attention. An HIV- There are also physical effects of prolonged and excessive positive diagnosis is a stressful experience and needs to stress, which include headaches, high blood pressure, be handled as such. Although it is no longer the death hypertension, upset stomach, constipation, diarrhea, sentence it was at the beginning of the pandemic, it is increased sweating, sleep problems, and sex problems, to very serious information to receive. You can expect to stay name just a few. Stress can also age you at a faster than reasonably healthy for a long time, but many uncertainties “normal” rate. and unknowns are now moving into your life. In order to maintain the quality of your physical health An HIV-positive diagnosis affects people in different and your everyday joy of life, your stress levels must be ways. Some people try to deny that their lives have been managed in a positive way. Excessive stress has a direct significantly changed and try to continue life as before. negative effect on your immune system and your body, Unresolved anger and anxiety can lead to irresponsible so it is in your best interest to tackle the issues that are acting out, diminished sense of personal accountability, making you feel stressed. * blaming others, engaging in unsafe behaviour, angry For your sustained mental health, talking is critical. The outbursts, overeating or under-eating, drug and alcohol longer you take to get support and unburden yourself, abuse, increased smoking, and withdrawal from family the more stress you carry. Besides providing emotional *page 62: Stress f Positive Living Society f Volunteering at the Support: Positive Living Society Average Joes Evening Support Group Join our friendly family of volunteers Wednesdays, 8-11PM at Numbers Cabaret: while contributing to your own well- talk, play pool, and enjoy free pizza. being, growth and knowledge about HIV, 1042 Davie Street. Call 604.893.2200 for as well as the operation and enhance- more information. ment of the Positive Living Society. We AJ’s Café Fridays, 3-6PM at The Junction: have a great variety of opportunities, a social gathering for HIV positive men. ranging from research and writing to 1138 Davie Street. Call 604.893.2258 for staffing the Lounge or Polli & Esther’s more information. Closet to participating on the Board of Directors. There is something for every- Come into the Positive Living Society one, and every talent! Great benefits office for a session with a trained include new friends, an annual gala cele- Peer Counsellor. 1107 Seymour Street. bration, and fun! Call the Volunteer See the Membership Coordinator or call Coordinator at 604.893.2298 or register 604.893.2258. at positivelivingbc.org. Check out the healing, spiritual, and couples retreats. q For more information on all these activities visit positivelivingbc.org 5 and social support, talking about and disclosing your confidential. The counsellors involved with the EAP status has been clinically shown to strengthen your don’t report anything said in therapy to the employer. * immune system. Spiritual support can also be beneficial “Shop” for your counsellor carefully. Select someone you when pondering those “why” questions. Friends, a mentor, quickly feel comfortable with. Don’t be afraid to ask a priest, or any respected person in your life can help about formal qualifications, the therapist’s philosophy you to regain your internal peace and balance. and religious beliefs, and the type of counselling that they do. Ask about their experience with HIV-positive Get Connected people, gay people, addictions, etc. If they do not want A good way to see where you’re headed is to talk to people to disclose some of these details to you, you’ll want to who have travelled this road before you. There are a choose someone else. number of avenues available to help you meet others who The best thing you can do for yourself after an HIV-pos- have also had to cope with an HIV-positive diagnosis. itive diagnosis is to continue to live your life to the Support groups: Join a support group for HIV-positive fullest. Keep up with your friends and your normal people. Some of these are talk and information based and social routines. Consider volunteering with the Positive others are geared towards just having fun in a socially Living Society or the AIDS service organization of your supportive setting. These groups can provide a great choice. Make new friends and expand your interests. source of information and emotional support from other Stay involved in life, especially in your own! HIV-positive people who are living full, rich lives. The Positive Living Society has a number of support groups, and other organizations have them as well. Call around to find one that suits your needs. Counselling: Consider getting counselling, either with peers or with trained workers. Many companies have Employee Assistance Programs (EAP) that are provided by independent organizations and are, therefore, totally depression, shame and stigma, battling f Peer Navigator * page 54: isolation, and building support networks. Services Everyday Peer Navigators can also help you with Life/Relationships and Peer Navigators provide current HIV starting or changing medications, deal- Legal Issues health information, answer questions, ing with aging and HIV, maximizing your and show how other HIV positive people quality of life, or helping you connect to develop self-management strategies. appropriate services. Through a series of supportive discus- For more information please contact our sions, they use everyday language Peer Navigators: 604.908.7710, naviga- instead of jargon or medical terminology