Healthy Living Manual

100 Pages·2012·2.84 MB·English

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From our personal struggles and
challenges come our courage and strength.
© POSITIVE LIVING BC 2012
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 [email protected].
Positive Living Manual, 5th Edition, ©2012 Positive Living Society of British Columbia
Permission to reproduce: All Positive Living Manual articles are copyrighted. Non-commercial reproduc-
tion is welcomed with the exception of photographs and charts. For permission to reprint articles, either
in part or whole, please email [email protected]
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
Adedicated team of your HIV-positive peers and We know the HIV experience is complex. What’s more,
other 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
Since HIV disease is constantly changing by way of new
good health through nutrition and a variety of physical,
treatments, theories, and attitudes, so too are the needs
emotional, medicinal, and alternative therapies. You’ll
of the HIV-positive community. We’ve done our best to
find out how to connect to a broad network of peer-driv-
anticipate your most pressing needs in this edition of
en and professional support, whose collective expertise
the Healthy Living Manual, but if we’ve left any of your
can help guide you through almost any obstacle. You
questions unanswered, please feel free to contact the
might also discover that some of your most intimate
Positive Living Society of BC (604.893.2200,
concerns are common in the HIV-positive community:
1.800.994.2437 or [email protected]).
How will my HIV-positive status affect my sex life?
Do I need to tell my family and friends?
Where can I find psychological support?
I can’t face work; can I get financial assistance?
1
HIV -positive? What now?
A message from an HIV-positive friend...
You might be scared, angry, and sad. This is natural – Think carefully before disclosing to anyone else in your
so 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
If you feel burdened by dealing with your diagnosis by
Despite how you might feel at the time of your diagnosis,
yourself, you have options. You can speak with a coun-
your life is not over. Many people with HIV have faced
sellor or psychiatrist, or you can choose to tell a close
other life-changing circumstances and come out ahead.
friend or family member. Don’t rush to disclose – when
You can too. You may hear people say “I’m HIV” instead
it feels right and safe, you’ll probably know.
of “I am HIV-positive,” but HIV does not define you or
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
Legal Issues, as well as the section on Transmission and
You will love again and be loved. It’s a fact. There are
Prevention for more specific information.
many supportive and compassionate people, both HIV-
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
diagnosis, while others need medication for periods of time.
Who you tell is entirely up to you. This is called disclosure.
Everyone’s situation is different and you need the advice of
If you have a partner, it’s important to tell them so they can
an HIV specialist. You will need regular blood work to help
get tested and so you can adopt safer sex practices. Many
you and your physician manage some of the symptoms of
partners remain in loving relationships after one or both
HIV and decide when it’s the right time for medication.
have been diagnosed with HIV.
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
and Spirituality I have lived with HIV for 12 years and in many ways,
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
E
motional, social, and
spiritual support
AnHIV-positive diagnosis is an emotional shock. The important thing after an HIV-positive diagnosis is
Your 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-
Your Mental Health tration. The newly diagnosed are particularly vulnerable
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
* f f
page 62: Stress Positive Living Society Volunteering at the
Support: Positive Living Society
Average Joes Evening Support Group Join our friendly family of volunteers
Wednesdays, 8-11PMat 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
have a great variety of opportunities,
AJ’s Café Fridays, 3-6PM at The Junction:
ranging from research and writing to
a social gathering for HIV positive men.
staffing the Lounge or Polli & Esther’s
1138 Davie Street. Call 604.893.2258 for
Closet to participating on the Board of
more information.
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
f depression, shame and stigma, battling *
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
[email protected].
to make topics such as HIV self care, dis-
ease progression, and safer sex easier to You can also check out our Resource
understand. Centre at the Immunodeficiency Clinic
(IDC) at St. Paul’s Hospital (Comox
Talking with someone who is HIV posi-
Building, 5th floor) where our Peer
tive, like you, can reduce stress and anx-
Navigators are available on site to help
iety. Having good mental health and
you with information and support.
social supports are important to keep
your HIV in check, improve your emo-
tional health in areas of self-esteem,
6