My diagnosis, my day, my life.

As it was coming closer to Dec 16, I kept trying to make excuses as to why we shouldn't go and get tested. We really couldn't afford it (for some damn reason they were charging an arm and a leg!) but hubby just really had a strong feeling that it was time to get all of our tests done. We had to take the bus down there, we just went to Planned Parenthood because that's where I was getting my birth control so we just made the appt. When we went in they were backed up, I was cranky because for some reason I just really didn't want to be there.....They had just gotten a new computer system, and none of them knew how to use it. Go figure! Finally after waiting there for over an hour they took hubby back and ran all the STD tests on him.

*Informational Sidebar* In some places HIV tests are done almost like a pregnancy test, in that you get results in 20 mins. They just take a finger prick of blood and put it on a test strip and it tells if your positive or not. If you come up positive on that test then by law they have to take a full blood sample and send it off to a lab to double check it. And that's the test we got done.

So when they were finally done with hubby they took me back and ran all those lovely tests. Then they made us wait.........I couldn't understand what was taking so very long. I was getting more and more anxious and I just had a feeling in my gut that something was wrong. Finally they took hubby back to give him his results......as I was sitting there waiting, one of the nurses said to the other "She's got it...what do we do?" when I looked up at them they were very sheepish....yes indeed that's how I got to find out! When they didn't bring hubby back out, I knew it was true....because he had to go back and get his full blood draw, so when the Dr came to get me I knew.......she was new at this job, and it turns out it took so long because she didn't know what to do or how to say it, so she had to call someone else and take down notes! How very heart felt. But she was sincere, she almost started crying. I was just in shock, at the time it was like it didn't even matter, I didn't care. (oooooo I would later!) So they took me back to draw my blood, hubby was done and I knew he was in the lobby........waiting.. I didn't want to face him......I was sooo scared to see him.....the lobby was completely full of women waiting for their birth control, I mean standing room only. And poor hubby is sitting there all by himself crying. When he saw me come out he burst into tears all the harder and rushed up to me........"I'm sorry honey I'm sooo sooo sorry" I just wanted to get out of there, I didn't want all those other girls staring at us like that. We had to wait for a taxi to come and pick us up, and we didn't have any medical insurance.
We got tested on Dec 16th, but because of Christmas we couldn't get in to see an HIV doctor until after we got on state insurance and then the long long long wait. We finally got in to see the doctor at the end of February! My god I don't think I will ever forget December 16th 2004
Those first couple of months were hell. If you search the Internet you find lots of very old information that can really really scare you. How do you know its not current?! Most articles don't always have a date attached. We received some counseling and the woman I was seeing told me...and I will never forget this...she assured me that catching it as early as we did in me..It would be 10 years, maybe more before I needed meds!!
She could not have been more wrong. I needed meds two years (aprox.) after being diagnosed. My numbers just kept declining until finally I wasn't able to fight off even the easy stuff. Small colds were a big deal in our house. I can remember my first night of taking meds. I am on three different medicines that we call the "cocktail" sure I only take a small handful and that's much better than it used to be...but its still four pills that I have to take everyday for the rest of my life. That night started it all. One Truvada, one Norvir and two Lexiva. Pete had been on this same cocktail for years already. He tried to offer words of wisdom...letting me know it was ok, that they aren't so bad...yea. Hard to believe at the time. I stared at them in my hand for far too long...finally, down the hatch. It took me about a month of living on the couch and sleeping alot before I was acclimatized to the pills. Every night. Same time. Same pills. Sure its not "so bad" but they feel like shackles quite often. Tying me down. Take them or die. Simple right? Sucks.
The poster's for the pills show happy people riding bikes, taking hikes with words like "just once a day!" I hate those posters. This is not easy. Yes its just once a day. Yes it used to have been worse...much worse! Five times a day, upwards of 25 pills a day....yes, that was worse. There is no doubt that was worse than what I deal with today....but I wasn't there. That wasn't my experience. This is.
My feet tingle now. Starting signs of nueorpathy. My dear sweet husband already has a more advanced version of this. It will crawl up our legs....progressing. I try not to dwell on it.
Then I see on the news that our government thinks abstinence only education works!! Others...headed for my fate. Please Gods no....let the world wake up from the AIDS inflicted nightmare.
Today I got my latest lab results. Every three months, same dance. Viles upon viles of blood taken....we joke that our blood must be particularly tasty to the vampires. A delicacy maybe. Yes. That's why they take so much blood! Today both hubby's tcells and mine are as high as they've ever been. Our meds are working and working well. Our viral load is undetectable still. Most likely there will come a time when our meds won't work anymore....and then we have to start all over again with a new cocktail. The couch will still be there for me. Now if only we can find that cure....what a wonderful day that will be.

Some links to some articles *I've* written on the topic of HIV. (in the entry below this there are links to articles I *didn't* write that are great to check out as well.)
How HIV has changed my life
My feelings about my disease
What to do when a loved one tells you they have HIV

DePhoMo 1: World AIDS day

I highly doubt I'll be posting all my DePhoMo[December Photography Month] entrys here (One picture taken by you, or with you in it everyday for the month of December) I wanted to make sure I got this one in....While this may not exactly be a "picture"...I still created it, and its more fitting than anything today.

AIDS is not everything I am. It does not consume me, it is not *me* entirely, but it is part of this whole. There are many many times that I feel like this:

But then again...my life is also filled with hope, peace and much love. There is more stigma than ever surrounding AIDS. Please, educate yourself. Learn more, open your mind...and then judge. You don't know how I got it. You don't. You don't know what I've been through to get to this point of advocacy and hope. It touches anyone indescriminatly. If we cover our eyes and pretend we can't see AIDS...we miss out on some powerful opertunities.

Please...please don't put HIV in your bag of denial:

Happy DePhoMo kick off. Now go get tested, and then read some about what AIDS REALLY is.

Thebody.com

Poz.com

HIV+ women having HIV- babys

HIV stigma and women

No viral load=No transmittion!!

AIDS AIDS AIDS a poem

Please read any or all of these articles. None of them are written by me. All studies are by professionals. This is not a matter of opinion. This is fact now. Thank you for your time. Your own education is a blessing to me.

Baby Talk? by Liz Highleyman

Women with HIV can, and do, have healthy, negative children. Liz Highleyman explores the path to positive mommyhood.
Listen up, HIV positive ladies: As long as you’re on the right treatment during pregnancy, you have only about a 2% chance of passing the virus on to your child. All you need to do is take care of yourself, get good prenatal care and avoid risk factors that can complicate your pregnancy. “Being prepared for a pregnancy is the best gift parents can give to their baby,” says Brown University obstetrics and gynecology professor Susan Cu-Uvin, MD, who treats HIV positive women at the Miriam Hospital in Providence, Rhode Island.
Whether you’re pregnant, working on it or just want to be ready if a baby is in your future, the best place to begin is an honest discussion with your doctor about your health as well as any thoughts about having a baby. Not all doctors are supportive or have the HIV smarts to help you with the care you’ll need. So if you need to switch HIV docs or find an obstetrician-gynecologist (ob-gyn) who has experience working with positive women, ask your local AIDS service organization (ASO) for recommendations or check the AIDS Services Directory at www.directory.poz.com.
Goal One: Get Healthy If you’re not taking good care of yourself, now’s the time to start. “Regardless of HIV status, healthy women are needed for healthy babies,” says Vicki Cargill-Swiren, MD, who directs minority research and clinical studies at the National Institutes of Health’s Office of AIDS Research.
With your doctor’s help, you’ll need to make sure that you’re on top of existing health problems, such as diabetes and high cholesterol, that can be made worse by taking certain HIV meds during pregnancy and increase the risk of complications. Treating sexually transmitted diseases is important too. One study showed that women diagnosed with genital herpes during pregnancy were nearly five times more likely to transmit HIV to their babies.
Your doctor and ob-gyn can also give you advice about maintaining your overall good health through diet and exercise. Drinking alcohol, smoking and doing drugs can cause serious problems for your baby. And raw foods, like meat, seafood and eggs, may pose a double danger since they can contain germs that are risky for both pregnant women and people with compromised immune systems.
Checkups for HIV positive moms-to-be should include the same basic tests that negative women get. But skip any unnecessarily invasive tests, such as amniocentesis or scalp monitoring during labor, since these can increase the risk of HIV transmission (ultrasound is safe). Get your viral load and CD4 count tested before you become pregnant and then often as the big day approaches. Having an undetectable viral load is the best way to make sure your baby doesn’t get HIV. If your viral load isn’t there yet, talk to your doctor about starting, adding or switching meds.
And don’t forget about eating a diet (or taking supplements) rich in folic acid, iron and vitamin A, which can help prevent certain types of birth defects and other problems.
Treatment Tricks Finding a baby-safe drug regimen is the most important defense against giving HIV to your child. Pregnant moms need to safely lower their viral loads as much as possible: A low viral load reduces the risk of babies coming into contact with maternal blood and other fluids that contain HIV.
But aren’t all those powerful antiviral medications dangerous for the baby? There is some concern about preterm births, but study results have been encouraging. According to a recent report form the Antiretroviral Pregnancy Registry, which tracks side effects among babies exposed to HIV drugs during pregnancy, birth defects were no more likely to occur among babies exposed to HIV drugs during the first trimester of pregnancy (the most vulnerable period) than among babies born to HIV negative moms. Of course, certain HIV meds are dangerous for both pregnant mom and baby—but more on that later.
The one med all expecting mommies will want to take is AZT (generic now but also known by the brand name Retrovir), which has proved very effective at preventing mother-to-child HIV transmission. Even if you don’t yet need treatment for your HIV, most docs will prescribe combination therapy that includes AZT (you may be able to stop treatment after delivery).
If you’re pregnant or trying and already on combo therapy, you and your doc may need to adjust your regimen to include AZT or otherwise make sure your meds are baby friendly.
AZT may be combined with Epivir (3TC), another nucleoside analogue with a good safety record during pregnancy. Other “preferred” HIV drugs to consider are the protease inhibitors Invirase (saquinavir) combined with low-dose Norvir (ritonavir) or Viracept (nelfinavir). All three have been shown to be safe in studies involving pregnant women. A recent study conducted in Ireland found that blood levels of Invirase/Norvir were more likely than Viracept to remain stable during pregnancy—which is good news since PI levels in the blood are often low during pregnancy. In the same study, Invirase/Norvir was also more likely than Viracept to decrease viral load during the third trimester of pregnancy.
Viramune (nevirapine) is another preferred choice during pregnancy. It has been known to cause liver problems in some women with CD4 counts above 250, however, and should not be taken alone because of resistance concerns. Rodney Wright, MD, director of HIV programs in the Department of Obstetrics and Gynecology at Montefiore Medical Center in the Bronx, is too concerned about liver complications to prescribe it to many of his pregnant patients.
* Moms-to-be should be especially wary of the drug Sustiva (efavirenz), which the FDA recommends avoiding because of the risk of birth defects. According to Dr. Wright, the risk is low, “but it’s higher than in women not on this drug.” He adds, “We try to switch drugs as soon as possible” after a woman learns she’s pregnant or—even better—before she starts trying to become pregnant. The combo Videx (ddI) + Zerit (d4t) and Viramune can cause trouble for pregnant women too, specifically liver problems and fatal lactic acidosis. And if you’re coinfected with hepatitis B or C, wait until after delivery to start the hep treatments interferon or ribavirin.
Baby Day When it’s time to give birth, you can expect your experience to be much like any other woman’s except that you’ll receive intravenous AZT to further cut the chances of HIV transmission. As a newborn, your baby will get the same drug orally for six weeks after birth. Studies show that AZT is safe for newborns, and there don’t seem to be any problems later on for children and teenagers who took HIV meds before and after birth.
Although babies are born with their mother’s HIV positive antibodies, they don’t have the virus itself. It can take 18 months for HIV negative babies to lose these antibodies, so it can be slow and frustrating to rely on standard antibody tests to confirm a baby’s HIV status. Viral load tests are an ever more common alternative because they check for HIV in the blood and can help rule out infection in most babies as quickly as one month after birth.
After your baby is born, there’s one last step to preventing transmission: Don’t breast-feed. HIV positive women shouldn’t breast-feed because the virus can be passed along in breast milk. Studies in Africa suggest that breast-feeding might increase the risk of transmission up to 15%. Lots of babies are formula-fed nowadays—and positive moms and their new babies form bonds that are just as strong and joyous as those of breast-feeding families. Not to mention the peace of mind of knowing that you’ve done everything you can to protect your baby’s good health—and your own.

What's a Girl to Do? by Regan Hofmann

As new HIV infections among U.S. women keep rising, a new study probes America’s attitudes toward positive ladies. And the findings ain’t pretty.
content> In the United States, women now account for more than a third of new HIV infections and a quarter of new AIDS cases. The proportion of AIDS diagnoses among women has tripled since 1985. And recently released statistics from a Centers for Disease Control and Prevention (CDC) study indicate that one in four female Americans between the ages of 14 and 19 has at least one sexually transmitted disease (though, for some reason, HIV was not one of the diseases studied). Unless things change, it looks like the United States is headed in the direction of the developing world, where closer to 50 percent of all those living with HIV are women and where the odds for the ladies are getting worse all the time.So why women and why now? Given the lag time between when women get infected and when they are diagnosed, and the secondary lag between those diagnoses and when that data are made public by the CDC and similar groups, it’s important to note that what seems like a recent spate of new infections among women likely represents infections that happened anywhere from three to 20-plus years ago. The truth is that women have always contracted HIV but that the numbers announced publicly have only recently gotten high enough to cause alarm.Recognizing the fact that more women are living with HIV in the United States than ever before, the Foundation for AIDS Research (amfAR) hired the research firm Harris Interactive to chart the public’s opinions of HIV-positive women. The goal was to identify and eventually correct any misconceptions that could be leading to the swell of new infections among women and girls. Polling a wide cross section of more than 4,800 Americans, amfAR flushed out a truth that I, an HIV-positive woman, have long suspected: The stigma surrounding women and HIV is particularly severe.The study confirmed my belief, for instance, that how a woman contracts the virus colors people’s perceptions of her. Nearly 60 percent of the respondents said they have a “very negative opinion” of a woman who contracted HIV through exchanging sex for drugs or money, 30 percent said they would look down on a positive woman who got the virus from “having multiple sexual partners,” 14 percent said they would scorn a woman who had sex without a condom, 12 percent were uncomfortable if a woman became positive as a result of not knowing the HIV status of her sexual partner. Even women who contract HIV via a rape or blood transfusion weren’t spared: About 5 percent of respondents said they would have a “very negative opinion” of them.The idea that people who “do bad things” get HIV and that people who get HIV are bad sits at the core of our struggle to prevent a disease that is almost always preventable. Until we can convince people that the virus has no moral preference, some people will believe that their ideology, not actual sexual and other precautions, will protect them. True, certain acts are riskier than others, but a female prostitute who has unprotected sex with a client and a married woman who has unprotected sex with her husband after he cheats on her may experience the same risk. People’s opinions on the relative morality of those two circumstances may differ, but the virus is unaware of that distinction and will affect both people equally.The Harris Interactive study does not attempt to conclude why women are prone to disproportionate levels of HIV infection. But in revealing Americans’ deep stigmatization of HIV-positive women, it suggests an endless cycle of cause and effect: The stigma stifles discussion of prevention and testing; the lack of awareness and testing increases infection; women who do test positive are made to think they are bad and should have known better, so they are driven underground, becoming invisible, further increasing stigma. And when HIV-positive women are afraid to come forward, suffering silently with their scarlet A, the public continues to think that women are not at risk, even as the numbers climb ever higher. To truly understand the depth of people’s distaste for women with HIV, consider the study’s other findings. A mere 14 percent of people said women with HIV should have kids. Meanwhile, 59 percent said women with cancer should have kids, 47 percent said depressed women should bear children, 37 percent said women with multiple sclerosis should have kids, 20 percent said those with hepatitis C should conceive, 19 percent said women with Down syndrome should get pregnant and 17 percent said women with schizophrenia should have kids. If an HIV-positive woman decided to have a child, one third of Americans would not support her decision at all. I can only surmise that this speaks to the widespread ignorance of the fact that it is possible to prevent mother-to-child HIV transmission; that many HIV women will live long full lives and be able to care for their children; and that being pregnant has been proven to bolster the health of HIV-positive women.Now that amfAR has identified how painfully our society can treat women living with HIV, perhaps our next step should be to focus on properly teaching girls and young women how to avoid HIV—and other STDs—and to work to diminish the devastating stigma that keeps women in hiding, thus perpetuating the myth that they are not increasingly affected by AIDS.

No Viral Load=No Transmission? by Laura Whitehorn

In January, the Swiss Federal Commission for HIV said what many HIV-positive people have been saying—or hoping—for a long time: that positive people whose viral load has been consistently undetectable and who don’t have another sexually transmitted infection (STI) are not “sexually infectious.” Bernard Hirschel, MD, says he and others issued the statement to protect people with HIV. Some positive people, he points out, are prosecuted for potentially transmitting HIV even though “no virus [means] no transmission.” So couples in long-term, monogamous relationships may be able to forgo condoms if certain conditions are met.These include: The positive partner sticks to HIV meds and is consistently monitored (twice a year or more), has been undetectable for at least six months, and has no other current STIs (which could cause genital sores, inflammation and an HIV viral-load spike). It’s worth noting that the Swiss statement was based on studies of heterosexual couples. Monogamy is emphasized not only because increasing sex partners increases risk. In one study, the immune systems of long-term positive couples seemed to recognize and protect against their partner’s HIV strain.Some positive people added their own testimonies that undetectable means noninfectious (to see their comments and add your own, search “not sexually infectious” at POZ.com). Also at POZ.com: Dr. Hirschel discusses the issue (search “condom-free sex?”) on video.