HIV/AIDS Awareness. A father’s choice.

Archive for the ‘General’ Category

Now on to #10 of the 25 things you should know about HIV (and probably don’t). These 25 things will impact what you do and the choices you will make.

“A good retreat is better than a bad stand.” ~Irish saying

#10: HIV can retreat to places the immune system cannot follow like your brain.

HIV can cross the brain-blood barrier (move from your blood to your brain), infecting cells in your nervous system. Most immune cells cannot cross that barrier, which surrounds the brain and spinal cord, so HIV can retreat where the immune system can’t follow. It enters the brain soon after initial infection – typically within the first several days – but doesn’t cause significant damage right away.

HIV in the brain doesn’t go after your neurons, those important brain cells responsible for transmission of electrical impulses that control the body. Instead, it goes after other cells that have long lives. Once inside these long-lived cells, HIV can stay in a latent state for an extended period of time.

Rather than directly killing brain cells – as it does with CD4 T-cells elsewhere in your body – HIV affects your brain by setting off a cascade of damages through inflammation and oxidative stress caused by free radicals..

Why is this important to you?

The damage that HIV causes to your brain and to your central nervous system can impair your neurocognitive functions. That can bring on symptoms such as poor attention, memory lapses, and mood changes.

Understanding what your viral load is in your cerebrospinal fluid (CSF) as well as your blood plasma is something to consider this when working with your doctor on your treatment regimen. Some antiretroviral drugs are better than others in crossing the blood-brain barrier and they can impact your CSF viral load.

Reducing your viral load in the plasma and CSF may be necessary to reduce neurocognitive impairment, but it will not halt all the inflammatory responses or completely undo the damage caused by HIV’s march on the brain.

While effective antiretroviral treatment and recovery of your immune system dramatically reduce the occurrence of these complications in your brain and severe HIV-related dementia, mild-to-moderate impairment of your neurocognitive and motor functions is still a concern even with treatment.

How does this affect your path?

There seems to be a never ending flow of information that you have to know to keep up with HIV. Choosing to be a full partner in your treatment and understanding all you can about how HIV affects your body is going to be a huge decision for you.

 Battles have to be waged on many fronts to deal with HIV in your body. HIV is not just a disease of your immune system – it affects many of your major organs.

It will have to be your choice to stay on top of what is happening in your body and what is happening with your treatment. While it may seem that HIV has taken away some of your choices, it has presented you with a whole set of new ones.

 “Every man builds his world in his own image. He has the power to choose, but no power to escape the necessity of choice.” ~Ayn Rand

The power is yours. What path will you choose?

What a headline! For the first time in history, our waiting lists have exceeded 4000 people who are waiting to receive life saving HIV medications.

Here is latest ADAP Watch from NASTAD:

http://www.nastad.org/Docs/Public/InFocus/20101029_ADAP%20Watch%20update%20-%2010.29.10.pdf

Now I would like to switch gears here just a bit and share something that I read last week. Brown University has won a $7.5-million, five-year federal grant to study how drinking alcohol affects people with HIV.

The money, from the National Institutes of Health, will establish the Brown Alcohol Research Center on HIV which will conduct several studies on how alcohol affects health and behavior. Peter Monti (professor and director of the new research center) said both alcohol and HIV weaken the brain and the liver. Alcohol use can also make a patient less likely to follow his or her medication regimen or to abstain from unsafe sex.

In other words, we know that alcohol is not good for you if you are HIV positive. You might not take your HIV medication. This research will look at how much if any you can safely drink. We also know that if you don’t take HIV medication, the vast majority will progress to full blown AIDS and face disability and/or death.

My point here is not to discourage research. It is to say very clearly that we have to get our priorities straight. What good is it to have a National AIDS Strategy if we can’t even have a strategy to allocate federal funds to the highest priority issues. Issues of how to fund the shortfall in ADAP are being debated in Congress with nobody denying it needs to be funded but disputing how it should be funded.

I realize that the federal government allocates money from different pots and it seems none of those pots are even on the same stove…

Furthermore, it has taken the intervention of NASTAD – National Alliance of State & Territorial AIDS Directors to get cost containment agreements with major pharmaceutical companies like Gilead, Boehringer Ingelheim and ViiV for ADAP.

So it seems we are still waiting for a comprehensive and workable National HIV/AIDS Strategy from our leaders in Washington.

While we wait, 4,157 people are waiting to receive life-saving medication.

“Courage is fire, and bullying is smoke.” ~Benjamin Disraeli

Now that quote is old. This guy Benjamin Disraeli lived in the 1800’s in Great Britain. I guess it means that no matter how much we like to say we have grown or evolved, not a whole lot has changed when you are on the receiving end of bullying.

What the hell are you so afraid of?

Now you might think that I am talking to the young gays who have been so affected by the taunts and beat downs. I am not.

I am talking to the bullies. Because if you have to bully someone, you’ve got to be afraid of something big in yourself or something that you don’t understand or you wouldn’t be putting up all that smoke.

The time has come to start finding out what this fear is all about and where it is coming from.  Are we – the parents – transferring our fears to our kids? Fear about what is going to happen to us in this economy? Fear that our government isn’t looking out for the working man? Fear that we are not all we should be?

I have read that it is a lack of empathy, compassion, and kindness that leads to bullying. But from where I sit, it is flat out fear that blocks our ability to see or treat someone different with kindness or compassion.

I come from a background running businesses in the construction and auto industry. We are tough guys that work hard to make a good living. But I learned a long time ago that the real tough guy has courage and fire – he doesn’t need to blow smoke by bullying.

My son is gay and he is HIV positive. I would be lying if I said that it didn’t scare me. I am most afraid of what he will face in his life – not that he didn’t live up to my expectations of what my son was to be. (It seems that pro football career is just not happening.)

It takes courage to step outside our comfort zone. The reason I liked the Disraeli quote so much was because it said courage is fire. We’ve got to burn down the walls of our little comfort zone to face new things and new people. We’ve got to burn down the walls to not be so afraid of what is on the other side.

You just might like what you find, I know I did. When the smoke is blown away, you can usually see the real person or the situation for what it is.

Our whole lives we are going to be facing new things and new people. Are we going to be afraid of everything that comes along and miss out on what life has to offer? I know that I am not going to miss a moment of my son’s life with all of the good times and all of the bad even if his being gay and HIV positive were not in my plans.

If I can become a blogger and advocate for those living with HIV, there may be no limits to what you can do if you face your fears.

So I ask one more time of the bullies (and their parents):

What are you so afraid of????

We are back with the 25 things you should know about HIV (and probably don’t) over 25 days. Today is #6.  These 25 things will impact what you do and the choices you will make.

“We don’t see things as they are, we see them as we are.  ~Anaïs Nin

#4: One of the biggest predictors of how well you will do living with HIV is a fighting spirit.            

Studies have shown that you will get sick less often if you have a good strategy to cope with HIV. When you are first diagnosed, it is an absolute shock and a life changing experience. Your life will never be the same and that can be stressful and overwhelming.

HIV is a life long condition that is often associated with severe stress on both your mind and your body. How you learn to deal with that stress (or have a strategy to cope with it) is going to play a big role in your life.

After you are diagnosed, you will need to work on living in this new reality. It is important to acknowledge that things have changed. The stressors that come with HIV impact the way you view your world, how you are able to deal with day-to-day situations, and the direction of your treatment. You may feel forced to confront illness, disability and death.

It is completely normal to feel fear, anger, guilt and maybe even denial.

Why is this important to you?

It is well known that a diagnosis of HIV can be very socially isolating. If you find yourself withdrawing from friends and family, feeling disconnected with your life, and perhaps being afraid of the stigma of HIV, it is more important that ever to make the effort to find a circle of support.

Long before the demands of HIV make a huge impact on your immune system, they are changing your emotional health. Only you will know when it is time to disclose your status to your family and your friends.

An HIV support group can be especially beneficial when you are trying to figure how to cope with HIV. To find an HIV support group near you, please use the AIDS Service Organization finder at http://asofinder.com.

How does this affect your path?

Are you going to fight or are you going to be defeated? This is a choice you will have to make that will impact the quality of your life and how often you get sick with HIV. It may also impact how well you do with HIV treatment.

If you have already made the choice to fight this disease and live your life without limitations, please make the choice to learn all that you can about HIV. A fighter knows the rules of the game.

HIV means facing life changes and losses. Your strength in coping with HIV means that there can also be wins.

“The world is round and the place which may seem like the end may also be only the beginning.  ~Ivy Baker

The power is yours. What path will you choose?

When we sleep, our bodies heal. In general, it’s recommended that people get eight hours of sleep each night. The amount of sleep differs to some degree by person and can also vary based upon other things going on in a person’s life. When you are fighting a chronic viral infection such as HIV, your body demands more rest.

Sleep disturbance is a common problem related to HIV disease. The frequency of sleep disturbance in those of us who are HIV positive has been reported to be as high as 73% of patients. These sleep problems are also showing very quickly after diagnosis even if you are asymptomatic. And they tend to get worse as HIV progresses.

The amount of sleep you get is directly tied to other issues surrounding HIV including depression, anxiety, complications and side effects from some medications.

Importance of Sleep

Having sleep is very important to us. It is very essential because sleep gives us the required energy to live another stressful day. It also gives us the time to rest, relax, and forget our worries and anxieties. Sleep also helps maintain our body healthy and keeps our immune systems working. It is as important as good nutrition and exercise so we should give extreme attention to our sleeping habits. Without sleep, our body will not function well.

Unfortunately, many of us don’t get enough sleep. Some of us experience lack of sleep due to too much work; stress, depression and anxiety, while others have sleep disorders or side effects that keep them from getting enough sleep.

As new anti-retroviral therapies are providing a life expectancy that is close to normal, long term adverse impacts on quality of life become increasingly important to those of us who are HIV positive Sleep disturbance and fatigue have a huge impact on daily life and disease progression.

Infection increases the need for sleep, and sleep is known to be a vital factor in keeping your body and your immune system healthy. Ample evidence exists that the quality of your sleep is significantly related to your immune system cell counts. Good sleep is part of an overall health maintenance strategy that will improve your ability to fight HIV on a daily basis.

Common complications of advanced HIV infection, such as peripheral neuropathy, can also be a source of sleep disturbance and make fatigue symptoms worse. Some findings suggest that symptoms of sleep disturbance and fatigue are independently associated with long term survival among those of us who are HIV positive.

It is really important to address your sleep issues to not only improve your quality of life, but improve your longevity as well.

Here are five things you need to know about improving your sleep with HIV:

Medications: It is widely known that several of the antiretroviral medications can contribute to or cause insomnia. Efavirenz – a common antiretroviral – has been well-documented to cause insomnia and other sleep disruptions, especially during early weeks of therapy. Long term uses of benzodiazepines like Xanax and the use of anti-depressant drugs may also contribute to sleep disturbances.

Stress: There is no question that the most common causes of temporary or longer term insomnia is stress. Worrying about something and having an your mind working at night can impact our ability to get a good night’s sleep. Combating stress takes some attention on your part and it goes hand in hand with learning to relax and coming to terms with HIV.

Relaxation:.When you are on the go and dealing with HIV, you might find it hard to relax when it comes to bed time because your mind is still working overtime. Wind down in the evenings by reading a book before bed, taking a warm bath or even practicing slow stretching and deep breathing exercises.

Exercise: Working your body is a great way to help you sleep because using  your muscles and making them tired you can make you sleepy by increasing your body’s need for rest. If you find it hard to sleep and relaxation isn’t helping, try taking a brisk walk or going for a bicycle ride in the early evening. Raising your overall level of physical activity will help you to sleep in the long term as well as improve your health.

Caffeine: Avoid caffeine, not just before bedtime, but also large quantities during the day. Not only does the stimulant effect of caffeine in drinks such as coffee, tea or energy drinks keep you awake for longer, but caffeine also reduces your ability to get good quality sleep. Tossing and turning in your sleep is almost as bad as not having any sleep at all.

It is important to talk to your doctor about your sleep before trying anything new.

To learn more about sleeping and HIV, please check out my new eBook series HIVantage coming very soon!

Also, please make sure that you have joined my mailing list. I will be giving away a complete set of my new HIVantage Point eBooks to five people in the month of October.

We have been hard at work here at MyHIVAIDSAwareness.com doing research and creating new materials on quality of  life issues for HIV.

I am most concerned about our ability to effectively use the knowledge that is available right now about how to live with HIV. It’s not that we don’t know what we should do – there is no shortage of great fact sheets and pamphlets about HIV and how to treat it, live with it, and minimize its effects. So why do so many really struggle with HIV and don’t have a good quality of life?

Terry Wilder from TheBody.com wrote an article last year that shared the eight characterists of long term survivors. I think that her work bears repeating so we can understand more about what we all need to do to both lengthen and improve our lives.

Here are her eight characteristics of long term survivors:

♦They are realistic and accept their diagnosis and do not take it as a death sentence.

♦They have a fighting spirit and refuse to be helpless/hopeless.

♦They have changed lifestyles.

♦They are assertive and have the ability to get out of stressful and unproductive situations.

♦They are tuned into their own psychological and physical needs — and they take care of them.

♦They are able to talk openly about their illness.

♦They have a sense of personal responsibility for their health, and look at the treating health care provider as a collaborator.

♦They are altruistically involved with other persons with HIV.

It seems to come down to the concept of mindfulness or a calm awareness of one’s body functions, feelings, and consciousness itself.  You’ve got to know what it going on within you, around you, and because of you. And you’ve got to own it.

Now the question becomes: How do we help ourselves and others make changes in both behavior and beliefs to increase the odds of long term survival? We have some ideas here, but I would love to hear your thoughts.

You’ve got 10 minutes to change your life with HIV in 50 ways. Get to it!

Here is an exercise I tried because I was feeling stuck in life after finding out my son was HIV positive. I wasn’t sure what was wrong, but the daily grind I had fallen into was not satisfying that voice in me that insisted there was something else out there for me. There was something more that I could do.

After trying desperately to understand what was going on, reading HIV books, searching the internet, and working with doctors and counselors, I was given a suggestion that became a catalyst for some pretty big personal changes.

Here is how you can change your life in 10 minutes, step by step:

Clear all distractions. Turn off the phone, the iPod, the laptop. Close your door, and go to a peaceful place.

Sit down at a desk or table, with a blank piece of paper and a pen in front of you. No typing on your laptop this time.

Set an alarm for 10 minutes.

Go. Write down 50 things you want to do, know, or change about living with HIV. The sky is the limit.

Don’t be realistic. Don’t put limits on yourself. Dream big time. Write down the craziest things you can think of, as well as the things that you don’t even think are worth mentioning because they are so wild or so simple. Write ’em down.

Work quickly. 10 minutes isn’t very long, and you have 50 items to come up with, if you can. Don’t think about whether or not to write down an idea – just do it. Write everything that comes to mind, even if it doesn’t make sense because there is no cure or your not in a relationship or whatever. Just keep on writing.

Something happens after about 5 or 10 minutes if you really get into this exercise. You stop worrying about exactly what the ideas are, and you start to get down to something in your gut that may have been locked away for a while. In an effort to get through 50 things in 10 minutes, you start to write things down that you aren’t even really sure you want, but that come from somewhere down deep inside of you.

Leave the list for a day. Try not to look at it, and certainly don’t change it. The following day, sit down and look at your list. How many of the items on it are something you can do? Can you see your way to making it happen?  Anything that surprises you?

The point of this exercise is not to create one more list of things that never gets done. Not one more set of dreams that don’t come true. Instead, it is simply to open up your mind to what you really want in your life with HIV. Now we can start talking about getting there.

Stay tuned.

Part 3 of 4 Part Series

 “Don’t worry about the horse being blind, just load your wagon “ ~John Madden

In the first two parts of this series, we shared that we all get knocked down once in a while and the importance of knowing your opponent.

In this third part of this series, I want to talk about knowing you. Knowing all you can about HIV plays the game is great, but how are you going to react to it? How do you play the game?

You may be one of the thousands this year who were blown out of a comfortable (maybe not so exciting) life by an HIV positive diagnosis. If so, your best option and only real choice may be to learn how you can come to terms with it. You may need to change yourself to live in this changed reality.

So let’s talk about coming to terms with the change that HIV has brought in our lives:

Change is elemental in our lives right down to the changing light of each day. Life is never stagnant. You’re either growing or shrinking, flying or falling. The earth hurls around the sun at 16,000 miles an hour, every hour of the day. If you don’t accept the changing perspective, this forward motion will roll right over you.

Change doesn’t have to mean doing something wildly different than you started out to do. Being HIV positive doesn’t mean your entire life will change. Your health status has changed and the way you view the world may have changed with it. But your dreams for a full and successful life don’t have to end here.

Change has been the starting point of some of the world’s greatest accomplishments.

Ever thought about what the world would be like if things never changed? What would happen if we never faced a crisis like the plague or polio?

When it comes down to having to change to meet the new challenges of HIV, here are a couple of thought that may help you along the way.

1 – Understand Your Strengths

We are all born with unique strengths, talents and spark. There are some things you do that most people can’t or won’t do as well as you. Those are your special gifts. Identifying these strengths is the first and most important key to your creating a change in your life. Once you identify those for yourself, focus on them, develop them further and you can rely on them as you make the changes you need to face HIV.

2 – Identify What Excites You

We have all heard the age-old question, “what is your passion”? The answer doesn’t have to be big time, earth shattering, or revolutionary – most of the time it is something simple. What are the subjects, people and activities you really enjoy? What things do you find interesting and stimulating? What fills you with life and energy just thinking about it? The answers to these questions will usually lead in the direction of a rewarding life even when dealing with HIV.

3 – Take A Couple of Steps Back

To make the leap into your new life with HIV, you may need to take a step back to learn and study. Be willing to be an student for a while. Find someone who has been successful in living with HIV and seek their friendship and council. Be flexible, patient and teachable. Nothing worthwhile comes without effort and paying the price of knowledge.

4 – Be Wary of the Naysayers

Your friends, family and peers have known you as you have been. Change frightens most people. To many, it is especially frightening to watch someone else have the courage to radically change themselves and create new dreams. Why? Because it eliminates their own excuse for not doing the same in their own life.

5 – Build Your Support Team

Find friends, mentors and a peer group who share your thoughts and will be allies on your new journey. Also educate yourself with books, magazines (like POZ & Postively Aware), web sites (like MyHIVAIDSAwareness.com) and support groups that will guide and support you as you build new skills, attitudes, and awareness in your new life with HIV.

I’ve been reading a great post from QSaltLake about living with HIV in Utah – the Beehive State. Yes, HIV does exist in Utah and the rate of infection is growing.

Most of the media coverage on HIV tends to be in the larger cities and on the coast. But this post tends to highlight some of my biggest concerns about this new generation and HIV infection. Here is a passage that is worth sharing:

“I think people have become complacent about HIV because there are so many things going on in this world,” said Griffin, noting that awareness campaigns around diseases like cancer, while necessary, have had the unfortunate effect of leaving HIV/AIDS “in the dirt.” “And I also think [people] go, ‘Oh, they have such good drugs out for it now. People aren’t dying the way they used to.’… I have talked to friends who say, ‘Why is it so important to use condoms anymore? HIV is nothing new. It’s just HIV.”

I see first hand in my son’s life that HIV is most definitely something new for your body. It is a chronic viral infection that your body must fight everyday. In order to stay healthy, you must address it through lifestyle, nutrition, sleep, exercise, and ultimately taking medication. You may not be dying, but your life is sure changing.

We don’t see HIV as a major deal anymore because people are not dying in front of us as they did twenty years ago. Dying today? No. But life forever changed? Yes. Do you want the words viral load and CD4 count to become some of the most important to your everyday life?

Stan Penfold, Executive Director of the Utah AIDS Foundation laid out the situation this way: “ “Education has become so challenging because in many ways, when the epidemic was new and big and scary, you had the press and everybody on board. It was something people talked about or at least were aware of. Today it’s possible that someone who is 18–20 hasn’t even considered HIV is around. They may have not gotten any education in school, including what the risk factors are. They don’t think they know anybody with HIV though they probably do , and if they do they’re living relatively healthy, fortunately, if they’re on meds.”

Know somebody who is 18 -20 years old? Let them know that HIV does exist in Utah.

Part 2 of 4 Part Series

 “Through my illness I learned rejection. I was written off. That was the moment I thought, Okay, game on. No prisoners. Everybody’s going down. “

~Lance Armstrong

In the first part of this series, we shared that we all get knocked down once in a while. Its part of what makes life interesting and it keeps us on our toes.

In this second part of this series, I want to talk about knowing your opponent. You need to see your opponent to understand their game plan. You need to know all about HIV and how it plays the game.

I know that you might say that living with HIV is no game, but what is a game anyway? Isn’t it some form of contest where there are opponents and rules that decide the winner? It is no different when your opponent is HIV and winning means living the healthiest life possible.

What is HIV’s strategy to win? It is a simple strategy of finding the CD4 cells in your immune system and using them to replicate. By destroying the ability of the infected cells to do their job in the immune system, your body then loses the ability to fight many infections. HIV is tricky and it changes its attack over time by mutating.

But your opponent has a weakness that can be exploited. If HIV is not able to replicate and mutate as often as it would like, it can be put into the corner.  A combination of HAART drugs creates problems for HIV replication, keeps the HIV offspring low, and reduces the possibility of HIV mutating.

HIV also doesn’t like healthy living, good nutrition and a toned physique.

For every person in this fight, there is a unique game with its own special set of rules for your body.  Your strategy to fight HIV requires you understanding your opponent and how it fights in your body.

Here are five ways to give you the edge in fighting HIV and in life:

Be real, be authentic, and be yourself. There is no way you can face your opponent with blinders on and no way to win this battle without being in focus. Too often people spend incredible amounts of energy trying to bend themselves into something they’re not or hide from the truth.

Shower your HIV team with honesty. Your team is your lifeline and they deserve your honesty in sharing this battle with you. Tell your HIV doc the truth about your habits and experiences so they can craft a strategy that can win. Be upfront with your support team about how you feel and what you need.

Take a sincere interest in HIV. You have got to understand it to fight it. Take the steps necessary to be the expert on your body and its response to HIV. Be the first to know what is happening and what your next steps should be.

Always be positive. Positive is more than a diagnosis in your life. It is easy to pile on to a complaint fest or add to the chorus of negativity on living with HIV. But you can be the standout who is focused on the positive outcome. It doesn’t just make your life easier; it makes your immune system healthier.

Recognize others. Don’t forget that you aren’t in this battle alone. Your team is with you and this includes caseworkers, doctors, therapists, family and friends. Let them know how much you value what they do for you and the sacrifices they make for you.

We enjoy reading and watching Mark S. King’s chronicle of his life as a gay man in recovery living with HIV. It is a must read here.

Mark created a great video blog on Six Tips for Choosing Your HIV Doctor that everyone looking for or thinking of changing doctors should watch. I don’t think Mark will mind too much if I give you a preview on his most important tips:

1. Interviewing a doctor is common and okay.
2. Bring medical records and a summary.
3. Find out the doctors credentials and education.
4. Try to combine HIV and primary care.
5. Check hospital privileges.
6. Be sure you feel comfortable being honest.

Mark’s biggest advice is to not be afraid to ask questions about anything you think is important. It is absolutely okay to ask questions about a doctor’s background. If he/she doesn’t like your questions and gives you an attitude, get another doctor.

You can watch Mark’s video at:

http://marksking.com/my-fabulous-disease/video-16-six-tips-for-choosing-your-hiv-doctor/

…but let it be more about his life.

Ryan White was diagnosed with AIDS at age 13 and gained international notoriety fighting for the simple right to attend school. In his short life, he opened hearts to the humanity of AIDS and opened minds to its reality.

As a father, I remember him most as a student and a son. He taught us about courage and forgiveness when by all accounts he should have shown none. His mother taught me how the strength of a parent can help shape the life of a child – even one facing the uncertain future of HIV/AIDS.

Photo courtesy of humanillnesses.com

It may have been inevitable that he would succumb to AIDS in a world without early diagnosis and anti-retroviral therapy. But his family’s fight for basic human rights drove awareness and focus in a time of fear and ignorance.

After moving to a new community, Ryan was able to thrive in his new world, attending school events, learning to drive, and making the honor roll. Maybe for a little while, he got to be a kid.

Two decades later, Ryan’s legacy lives on. His mark can be found in legislation that provides assistance to AIDS victims and in the commitment of his mother and friends around the world to fight the disease that killed Ryan.

His name is on our country’s most significant AIDS legislation: The Ryan White Comprehensive AIDS Resources Emergency (CARE) Act. First approved in 1990 and extended in 2009 by President Obama, the act created the nation’s largest HIV/AIDS federal grant program. It has been called America’s most important step in fighting the AIDS epidemic, helping thousands annually to receive support and care.

May we never need another Ryan White to lead a nation to better understanding. Bless Ryan and his family for their conviction and strength. This was something he didn’t need to go to school to learn.

“AIDS can destroy a family if you let it, but luckily for my sister and me, mom taught us to keep going. Don’t give up, be proud of who you are, and never feel sorry for yourself.”

~Ryan White

To find out more about the life and legacy of Ryan White, please visit http://ryanwhite.com.

I was speaking to a group at the Southwest Center for HIV/AIDS (http://www.swhiv.org) and heard some objections to the word “control” when it was used by another speaker. I started to think about what influence we really have over any aspect of our lives after a positive test…

The old Miram Webster dictionary says that control means to exercise restraining or directing influence over something or to have power over it. Let’s examine some ways we still have some control over our lives:

First, we control whether we seek or begin treatment.  The decision to begin treatment is a personal one best made in consultation with your healthcare provider.

Second, we control who we share our status with and who will be on our support team. I recently wrote a blog post about the positive benefits to your immune system when you share your status with supportive family and friends. It is your choice whether to share your status and who you share it with.

Third, we control our lifestyle choices. Even after a positive diagnosis, we make impactful choices about living a healthier lifestyle. Studies have shown that infection with a second strain of HIV (superinfection) may have medical consequences.

Fourth, we control our nutrition and diet. There are some basics we all should be aware of including the need for additional protein and calories in our diet. Several of the antiretroviral medications also require increased water intake in order to prevent kidney complications.

Fifth, we control how much we know about HIV. Have you heard the phrase “Knowledge is Power”? Read, ask, and share are the only ways that we will have the knowledge to take back some control after a positive diagnosis.

There are many more ways to exert some control over a diagnosis that may have us feeling out of control.

I recommend starting with Positively Aware – a publication by the Test Positive Awareness Network.  Please visit: http://positivelyaware.com/ . This bi-monthly publication is loaded with useful information.

Check back here frequently for more information and sources to build your knowledge and power.

FXWHUZE4J63R

Now this is interesting…

US researchers have found that viral load in individuals recently infected with HIV is closely related to that of the individual who transmitted the virus.

In the online edition of AIDS, researchers noted, “We found a strong correlation between HIV-1 RNA levels in source and recipient partners in HIV-1 transmission pairs”.

The study also provided some insights into the factors contributing to the continuing HIV epidemic. Most notably, they found approximately two-thirds of the source individuals who transmitted HIV had only recently been infected with the virus themselves.

Viral load in early HIV infection has been identified as an important factor in disease progression and individuals who have higher viral loads at this time have a poorer overall prognosis.

Researchers from the UCSF Options Project sought to determine the relationship between viral load in the source partner and in the partner they infected within identified transmission pairs.

Their research involved 24 individuals with evidence of recent HIV infection. The study included total of 23 source individuals (one individual transmitted HIV to two partners). All 47 individuals included in the study were gay men.

The viral characteristics of nine of the transmitting individuals suggested that they had recently been infected with HIV. This finding adds to research suggesting that recently infected (and usually undiagnosed individuals) are a key factor in the continuing HIV epidemic.

The study’s analysis showed viral load in the source and infected partners were closely correlated.

The researchers noted that further study is needed to better identify the viral genetic characteristics associated with higher or lower HIV-1 RNA levels, and to further understand host immune responses that shape viral replication over time.

To read more about this study: http://bit.ly/bjBeZI

I knew that my son sharing his HIV status made our family stronger. What I didn’t realize is that he could have been making his immune system stronger as well.

Recent research has shown that people who were open about having HIV had a stronger immune system than those who didn’t and less illness as well.

There are many reasons why you might want to tell people that you have HIV, not least is the loving support which your partner, family and friends might be able to provide.

Being open about having HIV can also mean that you have more hope about your future.

A 2006 study by AIDS Services for the Monadnock Region (ASMR) in New Hampshire found that higher hope scores were associated with a stronger commitment to manage their illness and lower perceived denial.

More importantly, those with higher hope scores reported greater overall health, greater satisfaction with their physical state, and a higher energy level. The study also reported the higher hope scores were correlated with higher CD4 values at the start of the study and subsequently eight months afterward.

Decisions regarding sharing your HIV status are not simple ones. There are many factors that must be taken into considerations. It’s important to think about who you are going to tell, and your reasons for telling them.

Unfortunately, it is true that some people have experienced discrimination or rejection when they’ve told others that they are HIV positive.  You will have to determine what is best for you. 

The most important thing is that you feel you have control over who you tell about your HIV status. Now you may have some control over your HIV as well.