Ten Ways to Take Care of Yourself When You Have HIV Disease
By, Adam Fredericks/ Gay Men’s Health Crisis (GMHC)
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
• 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?
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
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
www.aidsmeds.com
www.catie.ca
www.gmhc.org
www.projectinform.org
www.natap.org
www.thebody.com
www.tpan.com
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:
• 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…
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. 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:
• 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
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
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:
• www.aidsinfo.org (click on links for “national and int’l resources”)
• www.gmhc.org; 1-800-AIDS-NYC
• www.thebody.com/hotlines.html (national and int’l resources)
ABOVE ALL, Maintain Your Sense Of Humor Because Sometimes All You Can Do Is Laugh
http://www.gmhc.org/health/publications/ten_ways.html
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
• 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?
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
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
www.aidsmeds.com
www.catie.ca
www.gmhc.org
www.projectinform.org
www.natap.org
www.thebody.com
www.tpan.com
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:
• 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…
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. 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:
• 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
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
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:
• www.aidsinfo.org (click on links for “national and int’l resources”)
• www.gmhc.org; 1-800-AIDS-NYC
• www.thebody.com/hotlines.html (national and int’l resources)
ABOVE ALL, Maintain Your Sense Of Humor Because Sometimes All You Can Do Is Laugh
http://www.gmhc.org/health/publications/ten_ways.html
posted by AIDS-Care-Watch at 3:58 pm
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