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Day One (from AEGiS)

Posted: Monday, June 8th, 2015

AEGiS was an enormous website that operated from 1996 to 2013. It was founded by a religious sister when she found there was little information for PWAs (people with AIDS). The site had several million documents: government releases, medical reports, and news posted to HIV websites. Everything was used with permission of the copyright holder.

AEGiS was the publisher of record of the epidemic. Sometimes AEGiS was unwieldy because there’s only so much you can do in organizing several million webpages. In the rare occasions, they had to rebuild the search index, it would take several days.

Wynn Wagner wrote an introductory essay on HIV: Day One. It was an article from one HIV patient to another. Although AEGiS made sure anything medical was accurate, the whole point was for the newly infected. It was just a starting point. AEGiS reported that Day One was commonly the most read post on their site. For awhile, the essay was the most read article written on the subject.

AEGiS went offline in 2013. This version of Day One is from archive.org. This is their 2006 version.

 


You are in the right place if you just found out you have HIV.Yeah, me too. This web page is the beginnings of your Survival Kit. I’m not a doctor or professional counselor I’m just a person with HIV, and I’ve gone through the same thing you’re going through.My plan here is to give you five pointers that I think are Big Deals. Then, I’ll show you where you can go get whatever information you are ready for.


Five Pointers For Survival

Use a specialist. Make sure you find a doctor who specializes in HIV. That’s a Big Deal. Studies have shown that your survival depends on you being treated by a doctor who deals with HIV on a daily basis.Your regular doctor may be great, but you don’t need general medicine right now. You need a specialist.Those who get treated by an HIV specialist live longer. Period.If you can’t afford or locate a doctor, find an HIV/AIDS organization that can help you directly, or help you find public assistance.

 

Be good to yourself. That means eat right and take vitamins, and it means finding somebody to hug you from time to time.It also means stop beating yourself up over being HIV-positive. Oh, okay … do some self-pity for a day or two, if you want … but remember to snap out of it.
Your best medicines are attitude and knowledge. Find out all you can and be assertive. It’s you versus HIV. Doctors and social workers can help, but eventually it’s just you and the virus. Your absolute best weapons are knowledge and attitude. Those of us with HIV have gotten a reputation for being well-informed patients.It’s okay to ask your caregiver (e.g., doctor) questions or to disagree with a treatment strategy. It’s okay to be part of the treatment decision process. You need to take charge of your own health. Be assertive or aggressive, if you want that’s okay too, because your doctor is your employee.
Watch for outdated information.

  • Distrust anything you find on the internet that is older than a few months. Major advances in treating HIV have occurred recently. Some web sites haven’t reflected those changes. You will find the most recent information available here on AEGiS. Additional information is available on the AIDSinfo site.
  • The current (Feb, 2002) recommendation on treating HIV in adults is:
    1. Start treatment when CD4+ T cells drop below 350 cells/mm3 or plasma HIV RNA levels exceed 55,000 copies/mL (by RT-PCR or bDNA assay).
    2. Always use a COMBINATION of at least 3 anti-HIV drugs. This strategy is called HAART, which stands for “highly active anti-retroviral therapy.” In the popular press, the combination is sometimes called a “drug cocktail.” Individual drugs attack the virus in a slightly different way, so doctors have learned to apply a multi-front attack all at once.
    3. Tests are available to see which anti-HIV drugs will work best in your specific case. These are highly suggested but expensive.

 

Take this thing very seriously. Approach treatment as though it were a life or death situation. Hello! NewsFlash: HIV is a serious disease.You may have heard about “treatment failures,” where the virus has been able to mutate so drugs are no longer effective. Researchers say the Number One reason this happens is that patients (i.e., you) don’t take their meds correctly —

  • If you are supposed to take a drug at 9:00AM, just do it. Try not to miss a dose… not even one.
  • Make sure you know the rules about taking your particular medications. If you have questions, ask your doctor or the nurse or the pharmacist. Make sure you understand how to take your medications–
    • Some drugs require you to take them on an empty stomach.
    • Others require you to take them at meals.
    • One drug says don’t drink grapefruit juice. These dosing rules are not things you can just guess. Who would have guessed that grapefruit lowers the effectiveness of an HIV drug?
    • Don’t assume your doctor or pharmacist will tell you everything. They won’t. In fact, they may leave out some vital piece of information. If you are not clear on how to take your medicines, ask. Write your questions on a piece of paper so you don’t forget them.
  • If you don’t want to take a drug because of the nasty side-effects, call your doctor. There may be other drugs available to you. Until then, just take the drug and deal with the side-effects (unless you have been given special instructions on adverse reactions).
  • If you miss a dose, you are giving the virus an opportunity to overtake your meds. You need to maintain a high level of all medications in your system. If a level drops, the virus can mutate around your drugs… making them useless. Take your medication schedule seriously!

 


What HIV Is

HIV is a virus. A virus is an organism that has to be inside some other cell in order to multiply.

In the case of HIV, the virus gets inside your T-cells which are part of your immune system.

Technical Notes:

  • The virus gets into more than just T-cells, but T-cells are your biggest concern.
  • T-cell is sometimes called CD4+. For simplicity, you can treat T-cell and CD4+ as the same thing.

 

Monitoring
Your Health
There are two kinds of tests that see how well you are: “t-cell count” (or “CD4+ count”) lets you know how many t-cells you have, and “viral load” shows how much virus is floating around.You want to get a high t-cell count and a low viral load, but there are treatment options for all combinations of t-cell counts and viral load tests. Doctors and patient-activist groups often recommend you get both tests every three or four months.
Treatment Anti-viral treatment attacks the HIV virus in one of two places:(1) keepingthe virus out of your healthy t-cells;(2) keepingan infected t-cell from releasing new virus cells.Other treatment includes boosting your natural immune system so it can fight HIV. This is called “immune modulation.” The reason HIV symptoms don’t appear for many years is because your immune system does a remarkable job in fighting HIV. Anti-viral drugs are primarily for those whose immune system is overwhelmed by the virus. Other treatment strategies include ways of boosting your immune system’s strength, so it can fight HIV longer.
Opportunistic
Infections
If your t-cells drop too low, your immune system won’t be able to fight off diseases. These diseases are called “opportunistic infections.”Those who die of AIDS actually die from one of these opportunistic infections (a.k.a. “O.I.”). HIV doesn’t kill anybody directly. It just weakens the person’s immune system.There is a battery of weapons your doctor will have to prevent and cure these infections.Note that I said “If your t-cells drop too low….” I did not say “When they drop….” There are things you can do to help keep your t-cell count high. Getting smart about HIV is Step One, and you’re already on your way to do that.

It really isn’t a “death sentence.”

Hearing you have HIV is like hearing a death sentence. It can ruin your day.It ruined my whole week.

But I’ve learned about people who are still alive and healthy and happy 15 years after being diagnosed. It feels like a death sentence at first, but things will get better. Learning about the disease (like you’re doing right now) is your best defense. You are doing exactly what you should be doing.

You tested positive. Your test result is a piece of knowledge, and knowing about the disease is a powerful weapon. Now that you know, you can do something about it.

 


Time

If you are like me, there are several topics you are not ready for sex, for example.After I tested positive, I couldn’t even think about friendships, relationships, and sex but I was sure that I would never have a friend again.If you start worrying about this stuff in the next few weeks, just remember what I said. It’s just your brain playing mind games.

File this away for later: you can make friends again; you can have relationships again; and I am living witness that safe sex can be really hot.

 


Death and Dying

This is one thing we have in common with those who don’t have HIV. Everybody gets to die some day. But…

You don’t have to die today.

That is the one phrase that snapped me out of my HIV-blues.I’ve learned to pay attention to today. Things are better when I concentrate on today. When I get wrapped up in yesterday, it’s usually a feeling of regret. When I go off on tomorrow, it’s almost always fear.

Picture yourself with one foot on yesterday the other foot on tomorrow.

What’s left for today? With one foot on yesterday and the other foot on tomorrow, the only thing you can do about today is piss on it.

 


Topics

When I first hit the internet after getting my HIV test result, my head was swimming. I didn’t know where to turn. I started reading everything I could.The ÆGIS web (where you are now) is huge. It is the largest HIV web site in the world. This place is great for researchers, and it’ll be good for you when you want to find in-depth information.But it’s too big for you right now. Fortunately, the internet is full of excellent web sites dealing with HIV. Here are some places I found handy

Telling others
I told everybody about my HIV status, but you may choose another route. The Body has several web pages on topics related to telling others about you HIV status. The Body is a wonderful web site, and I think you will find lots of information there.
Topics at ÆGIS
This is a good starting point for you to explore the huge resources available here at ÆGIS. Subjects include opportunistic infections, traveling with HIV, and drugs.
Glossary of HIV/AIDS Terms
Bookmark this for a rainy day. There are lots of “AIDS glossaries” on the network, but this one is the most comprehensive glossary on the planet.
Politics and Activism
No HIV group has gotten more media attention that ACT UP (AIDS Coalition To Unleash Power). People with HIV have a reputation for being aggressive patients. You may or may not like the approach ACT UP takes, but that’s the group which has brought the most changes in the U.S. government particularly at the FDA (the agency that okays new drugs). Pressure from ACT UP forced the FDA to slash the amount of time it takes for new drugs to be available.
Yahoo’s HIV/AIDS list
Yahoo has an extensive collection of other links. Here’s where you will find access to regional services.
Search For Another Topic
You are already at the right web site to find in-depth material. ÆGIS is the mother lode of HIV articles, journals, and news stories. If I didn’t cover something you want to know about now, try the ÆGIS search engine.

That’s it. I hope it helps.

If you got anything out of this web page, I hope you got this: there are proven ways for you to stay healthy so you can be here for the cure.

I saw a piece in the newspaper recently about a doctor having to tell a patient that he was getting so much better that he was going to have to get off disability.

“Go back to work?” gasped the patient.

Many of us with HIV got used to planning for short-term goals. Now, we are thinking about retirement plans again. What a difference a few scientific discoveries can make.

The bottom line: HIV is a real bummer. But if you had to get the disease, you couldn’t have picked a better time to do it.

Play safe. Stay well. Blessed be.

The Supreme Court Decision that Almost didn’t Happen

Posted: Monday, July 1st, 2013
Justice Anthony Kennedy

Justice Anthony Kennedy

Justice Anthony Kennedy is the person who wrote the majority opinion in the DOMA cast, as well as several other opinions that have been important milestones for LGBT Americans.

Kennedy was appointed to the Supreme Court by a conservative President: Ronald Reagan. He was not the first name submitted by President Reagan, and how different my world would be if the Senate had confirmed the original nominee.

Senate democrats blocked that first one: Robert Bork.

 

 

AEGiS Health, Human Rights, and Humanitarian Award

Posted: Monday, October 8th, 2012

DNA is always the truth

Posted: Tuesday, September 18th, 2012

DNA never lies