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Day One (from AEGiS)

Posted: 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.

 
 

My Catch-22 Greeting

Posted: January 22nd, 2014

I had been with the com­pany for years, when they hired a new head for my divi­sion. At our first meet­ing, the new guy tried to intro­duce him­self to me, but I held up my hand.

When they hire some­body at your level, the com­pany does a psy­cho­log­i­cal pro­file,” I said. “Since you’re here, I assume you passed the pro­file. It means the com­pany doesn’t think you’re a demented loon.”

He smiled.

So you aren’t crazy,” I con­tin­ued, “and I have real issues about that.”

I walked out of his office. He was my boss for sev­eral years, and he never men­tioned my snarky ‘welcome.’

 
 

Brent: the Heart Reader — audiobook

Posted: December 12th, 2013
Brent: the Heart Reader

Brent: the Heart Reader. Cover for the audio­book version.

 

This is the cover of my sec­ond audio­book, Brent: The Heart Reader.

It’s still in the pipeline, but the record­ing (Chris Pat­ton) and art­work are done.

BRENT is my favorite book, and I’m so happy the pub­lisher decided to go audio­book with it. Record­ing and pro­duc­ing is a hefty expense.

BRENT is about a cute/young tarot reader who falls madly in lust (then love) with a young Apache man. They get their New Age on with a cool cast of char­ac­ters… some nur­tur­ing, oth­ers snarly and funny.

I really like this book, and I love that the Gay Book Hall of Fame added it to their collection.

Stay tuned: BRENT’s audio­book should be out in a cou­ple. of weeks.

 
 

My First Audiobook

Posted: December 9th, 2013

Vamp Camp is now an audio­book. My first.

I say it’s “mine” because I wrote the book, but Jason Lovett did all the heavy lift­ing on this project. He’s the nar­ra­tor (except for the intro and ded­i­ca­tion which I recorded and slipped in). The run­ning gag through the book is that the nar­ra­tor — a vam­pire — lives in Europe but is awful with every Euro­pean lan­guage. That’s hard to pull off, but Jason does it.

Vamp Camp is avail­able at Audi­ble and iTunes.

Vamp Camp by Wynn Wagner

 
 

Gov Perry vs Pres Obama

Posted: December 1st, 2013

My cur­rent health insur­ance is the Texas High Risk Insur­ance Pool. By law, it costs dou­ble the rate of reg­u­lar insur­ance. So I pay $1200 a month for health insur­ance that has a $7000 deductible with a ton of balance-billing. In other words, it is expen­sive crap.

The state lege killed the pro­gram as of next January.

Now up pops Gov. Perry. He says the pol­icy is to be extended until March. Thanks to Pres. Obama, I will have bet­ter health insur­ance next year that is HUNDREDS cheaper. So, gov­er­nor… you can take your expen­sive junk-policy and find a cre­ative place to stick it.

AND… based on my expe­ri­ence with Texas insur­ance, I am com­pletely thrilled that you refused to let Texas imple­ment an exchange. There were annoy­ing prob­lems with the fed­eral healthcare.gov but I do have health insur­ance for next year.

You can fix a web­site. You can’t fix asshole.

 
 

Happy Happy

Posted: November 28th, 2013

thanksgivukkahThanks­giv­ing. First day of Chanukah. Same day.  That won’t hap­pen again for hun­dreds of years. So, Gob­ble Tov on this fleet­ing alignment.

I ran into one of those web­sites that host dis­cus­sions on whether “pub­lic fig­ures” are gay or straight. I’m listed there, and some­one actu­ally spec­u­lated that I might be straight. I’m thank­ful that my gay­dar isn’t so bro­ken as that, but I won­der what I did to make him/her think I might not be gay. Did I miss some­thing somewhere?

I am seri­ously thank­ful for read­ers. Wynn’s books had their best year ever. My spir­i­tual and non-fiction did bet­ter than my gay romance fic­tion. Some bills actu­ally got paid. yippee!

Mostly, I’m thank­ful for my hus­band. After 20 years, I sus­pect I have a keeper.

 

 
 

Sculpture with Music

Posted: August 19th, 2013

The great­est part of lik­ing clas­si­cal (Mozart) or baroque (Bach) music is that when we find some­thing we like, it stays a “hit” for hun­dreds of years.

Act!

Bill the cat

Mozart (“too many notes) leaves me fraz­zled like Bill the Cat (“Bloom County” comic strip). Fraz­zled, but all in a good way. Mozart is like a roller coaster. Fun (in mod­er­a­tion and not when I am oper­at­ing heavy machinery).

Johan Sebastian Back

Johan Sebas­t­ian Back

Bach grounds me because it is pre­cise to the way musi­cal wave­lenghts work.

My heart is unleashed from every­thimg mun­dane. Bach is cor­rect math­e­mat­i­cally, so I never-ever crimge or won­der where some Shostakovich weird note.

I got over him being Lutheran. Petty. Stu­pid bias. But I’m okay with it now.

Musi­cians play­ing Bach do the best when they fol­low the notes… some­thing I always found hard on my key­board. I wanted to jazz up the con­certi, but Mr Bach really totally OWNS music. Mmmm. BMV 1055. Closed eyes.

Bach is a great SCULPTOR OF TIME.

 
 

My childhood rage against “The Man”

Posted: July 20th, 2013


So much about race and racism lately. I’m old enough to remem­ber water foun­tains marked “COLORED.”

Almost any­one who knows me won’t be sur­prised to know that I always drank out of the “wrong” noz­zle. Mommy knew me, but she was always embar­rassed to see me at the “col­ored” water foun­tain. She said that I was invit­ing dis­ease. I told her we ought to treated “the col­oreds” bet­ter so they don’t have dis­ease. Mommy wasn’t impressed, but she was used to my behavior.

The man­ager at Mon­nigs Depart­ment Store in Fort Worth wasn’t up-to-speed on my shenani­gans and my quiet Drink In demon­stra­tions. He ordered both me and mother out of his store.

Years later, in high school, my sweet­heart was a kid named Tony. The fact he was black was a big­ger deal than the fact we were both gay. Gay is bet­ter than black in Texas, I guess.

Tony’s mom accepted me. Up to a point. She was cer­tainly more accept­ing and kind than my own mother. Tony and I were almost insep­a­ra­ble my senior year in high school. He was gor­geous and funny, and his kiss sent me fly­ing somewhere.

Tony’s mom got us into her car one Sat­ur­day morn­ing and headed East. She was quiet with eyes that could eat through solid steel. Stoic. Severe, maybe.

The point is that when she said we ought to get in the car, there’d be no ques­tions and no delay. She didn’t tell us like she was a drill sargeant, but we knew we needed to be in the car. Period. End of discussion.

Where? I didn’t know

Tony, Tony’s mom, and I drove and drove and drove. They wouldn’t tell me where, except that it was some kind of group protest. I didn’t really have any­thing to protest other than the Viet­nam war.

We finally got to a scene like you see on the news­reels: angry white uni­formed guys on horses. This wasn’t a news­reel. Not for me. That day, I was there. And I was on the dan­ger­ous side of the stand-off.

There were deputies with guns and scary dogs with teeth that were at least a foot or two long. One of the scary guys ordered me to get away from Tony. It wasn’t going to hap­pen, and I didn’t feel like explain­ing why. I was more ter­ri­fied than I had ever been.

Then the speaker took the micro­phone. My heart melted as Mar­tin Luther King, Jr, spoke. He called for resis­tance to evil. He called for peace. Love those who persecute.

I still get a cold chill when I think of that day. Dr. King’s words were awe­some, but I was so scared of those guys in uni­forms. I was just a kid, one of the few white guys in the audi­ence so I sup­pose that I stood out a lit­tle. Tony held me tight, sens­ing how afraid I was. He acted like it was an every­day thing for him. The sad part is that it prob­a­bly was an every­day thing.

I saw the dogs and guns, and I saw this man calmly call for peace. I’ve never been the same.

Let this affir­ma­tion be our ring­ing cry. It will give us the courage to face the uncer­tain­ties of the future. It will give our tired feet new strength as we con­tinue our for­ward stride toward the city of free­dom. When our days become dreary with low-hovering clouds of despair. When our nights become darker than a thou­sand midnights/ Let us remem­ber that there is a cre­ative force in this uni­verse work­ing to pull down the gigan­tic moun­tains of evil, a power that is able to make a way out of no way and trans­form dark yes­ter­days into bright tomorrows.

Let us real­ize that the arc of the moral uni­verse is long, but it bends toward jus­tice. Let us real­ize that William Cullen Bryant is right: “Truth, crushed to earth, will rise again.” Let us go out real­iz­ing that the Bible is right: “Be not deceived. God is not mocked. What­so­ever a man soweth, that shall he also reap.” This is our hope for the future, and with this faith we will be able to sing in some not too dis­tant tomor­row, with a cos­mic past tense, “We have over­come! We have over­come! Deep in my heart, I did believe we would overcome.“

Martin Luther King, Jr.

 

 

 
 

The Supreme Court Decision that Almost didn’t Happen

Posted: 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.

 

 

 
 

Roman Catholic Hate Machine, even on Easter

Posted: March 31st, 2013

RCC Tim­o­thy Dolan went on the ABC Sun­day talk show. Instead of all the pos­i­tive things he could have done on Easter, the car­di­nal spewed idi­otic crap. He said all my gay broth­ers and sis­ters are enti­tled to “friend­ship” but not love.

I am an Old Catholic arch­bishop, and I so wish my voice was loud enough to drown out this Roman Catholic cardinal’s hate. Friend­ship, not love. The gay kids in Dolan’s area (NYC) need warm hugs. Card. Dolan needs to be trans­ferred to Nome.

Friend­ship, not love. This is the Roman bless­ing for Easter.