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Ten Ways to Take Care of Yourself When You
Have HIV Disease
 Take
Responsibility For Your Health and Your Life
When it comes down to it, no one cares about you more than you
do. While there are services and people you need in your corner,
it is you that must run the show. Balance is the key to living a
life that is quality and dignified.
Get A Support Network To Be With You In Good and Bad Times
As Bette Midler sang “You Gotta Have Friends” …or at least a support
group!
Sometimes it is hard to find support. You may live far from family
or be out of contact with them. Old friends may have died or moved
and it may feel difficult to make new ones. You might be anxious
about anyone finding out you are HIV positive. Here are some ideas:
- Join a support group (if that sounds too intense, try a short
term group)
- Get a therapist
- Have a meal with other people (for example, in New York, at
GMHC or at Momentum)
- Attend workshops or other events
- Connect with a spiritual community
- Join an HIV-positive chat room (be careful not to let it become
your main contact with other people, since that can isolate you)
Find A Health Provider With Whom You Can Build A Relationship
 Studies
show that people with HIV that have a partnership-type of relationship
with their provider live longer and have a better quality of life.
When choosing a provider, think of the kind of patient you are.
Do you want to be actively involved in all health decisions or would
you prefer to let your provider make most decisions without you?
How much information do you want? Are office hours important to
you? Does it matter what hospital your provider can admit you to?
To assist you in finding Dr. Right-For-You, try these resources:
Ask peers, friends and family what they like and dislike about
their health provider.
Compare the names in your health insurance provider directory against
those you find during your research.
Remember if the fit isn’t right, keep looking. Nothing feels worse
than a health provider that doesn’t fit.
Take HIV Medications When You Need Them
There may come a time when you need to consider taking HIV meds.
In the U.S., most doctors use the U.S. Public Health Service guidelines
for when to begin treatment.
| According to the USPHS Guidelines:
|
| Starting HIV meds is strongly recommended
regardless of your T-cell count and viral load
- If you have any AIDS related symptoms like fever or weight
loss
- If you have any AIDS related infections like thrush
OR… |
| Starting HIV meds is strongly recommended
- If you have a T-cell count less than 350 regardless of
your viral load
OR… |
| Starting HIV meds is strongly recommended
- If you have a viral load count greater than 30,000 by
branched-DNA viral load test
- If you have a viral load count greater than 55,000 by
PCR viral load test
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Chart is courtesy of www.aidsmeds.com
Simplify Your Regimen
 Remember,
though, there is more to consider than just your T-cell count
and viral load. Ask yourself if you are ready and able right
now to take medicine for your HIV. Do you have support? Are
issues like food and housing under control?
An HIV treatment education and adherence program can help
you learn about meds and their side effects. These programs
can also help to take your meds properly.
Work with your health provider to make sure that when you
do decide to take meds, your drug schedule will fit into your
life. This way you will have a better chance of success with
much less stress. It used to be that people had to take meds
at different times during the day, which could get very confusing.
Now, it is possible to set up a much easier schedule, taking
meds only once or twice a day. Research has shown that people
are better able to stick to their meds schedules when they
are simplified. Your medication schedule should be discussed
and agreed upon by you and your health provider.
Some resources for HIV treatment information include: |
| www.aidsinfo.org
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1-949-248-5843 |
www.aidsmeds.com
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| www.catie.ca |
1-800-263-1638 (toll-free in Canada) |
| www.gmhc.org |
1-800-AIDS-NYC |
| www.projectinform.org |
1-800-822-7422 |
| www.natap.org |
1-888-26-NATAP |
| www.thebody.com |
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| www.tpan.com
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1-773-989-9400 |
Maintain Good Nutrition
Visit an HIV nutritionist to get the most out of your food. Food
provides you with many of the nutrients you need to maintain a healthy
body and support your immune system. Today’s nutritionists can help
you make good food choices using the foods that you know or have
heard of and by advising you about food safety. An HIV nutritionist
can help you:
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- Prevent or treat wasting
- Monitor your lean muscle mass
- Manage cholesterol and triglycerides, blood sugar or liver
enzymes
- Manage side effects
- Recommend vitamins and other supplements
- Clarify information and advise on herbal and alternative
therapies
- And much, much more…
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A lot of community-based organizations now offer HIV nutrition
services. For a list of HIV-experienced nutritionists in your area,
call your local HIV/AIDS Hotline or check www.eatright.org. In New
York the GMHC Hotline (hotline@gmhc.org;
1-800-AIDS-NYC) can help you. Also try your health insurance provider
directory.
Get Up and Do Some Exercise
Exercise is very important when you have HIV. Studies show that
exercising increases white blood cells. It can also make you feel
better by reducing stress. The three parts to fitness are:
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- Flexibility
- Strength
- Cardiovascular conditioning
Of the three, strength training may be the most valuable
for someone with HIV. It can:
- Improve the immune system
- Increase appetite
- Increase metabolism
- Increase bone density
- Allow you to perform tasks with greater ease
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Learn About Benefits and Services You Might Be
Eligible For
There are many benefits and services available to people living
with HIV disease but you have to know about them and their requirements
in order to get them. Benefits you might be eligible for include:
Call your local AIDS service organizations for assistance with
getting these benefits
Get A Life Outside HIV
You had a life before HIV disease. You Are NOT
Your Disease. Being diagnosed HIV positive has its challenges. After
you adjust (however long that takes you), try some of the following
suggestions or come up with your own. The thing is to have something
in your life that is not HIV-related.
- Consider getting clean and sober
- Start or finish school
- Get a job or change the job you have
- Volunteer
- Start a hobby
- Listen to music in the park
- Get a new apartment
- Travel and explore
- Start a business
- Get a pet
- Fall in love
- Get married
- Have children
- Learn to drive
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Stop Stressing…So Much
 Okay,
so you can’t wipe stress completely out of your life. But you can
try to keep your stress levels down. Stress weakens the immune system.
Research shows that stress helps HIV to spread more quickly in the
blood and prevents HIV meds from completely doing their job. Some
people might turn to drugs (street, club or prescription) in order
to find some relief from the stress of HIV. This can further damage
the immune system. The following are some healthier suggestions
for getting rid of stress:
- Change your scenery (go outside if you are inside, come in if
you are out)
- Get some form of exercise each day (like going for a walk)
- Take bubble baths
- Get acupuncture, a massage or reiki
- Talk to somebody, don’t just stuff it inside
- Take yoga or tai-chi
- Stand under a train overpass and scream out your frustrations
when the train is passing
- Drink hot herbal tea
- Keep a journal (if you don’t want to write it, tape it or draw
it)
Ask For Help When You Need It
Living with HIV can be overwhelming and you don’t have to do everything
on your own. That is what AIDS service organizations (ASOs) are
for. Search around for one that meets your needs and suits your
temperament.
You can find lists of ASOs in publications like:
- Being Alive
- HIV+ Magazine
- Positively Aware
And websites like:
ABOVE ALL, Maintain
Your Sense Of Humor Because Sometimes All You Can Do
Is Laugh
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Gay Men’s Health Crisis (GMHC) is a not-for-profit, volunteer-supported
and community-based organization committed to national leadership
in the fight against AIDS. Our mission is to reduce the spread of
HIV disease, help people with HIV maintain and improve their health
and independence, and keep the prevention, treatment and cure of
HIV an urgent national and local priority. In fulfilling this mission,
we will remain true to our heritage by fighting homophobia and affirming
the individual dignity of all gay men and lesbians. For information
about our educational materials, please call GMHC Publications:
212/367-1205. For all other information, please call the Hotline
or visit our website.
Gay Men’s Health Crisis
The Tisch Building, 119 West 24 Street
New York, NY 10011
AIDS HOTLINE:
1-800-AIDS-NYC (1-800-243-7692)
TTY: 212/6457470 WEBSITE: www.gmhc.org
Treatment Education and Adherence
212/367-1458
Designed by Adam Fredericks
Illustration by Karen Fredericks
This booklet was made possible by an unrestricted educational
grant from Bristol
Myers Squibb.
© 2003 Gay Men's Health Crisis |
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