22 and Positive

Here's a blog from Beyond the Odds blogger Mr. Maximus. Have you seen our new site? www.beyondtheodds.org

In 2007, when I first found out that I was HIV positive I felt so angry that my partner kept his status a secret from me. At the same time I felt hurt and sad. I could not even believe that I am positive. My Ex and I were going out for a year and we were having unprotected sex. He asked me nonchalantly if I wanted to use condoms during sex and I told him that I don’t use them. He responded, “That’s okay it’s your choice”.

At the time his comment seemed a bit strange but I paid it no mind. I did not know that he was indirectly telling me he was HIV positive. I guess I did not understand him. The night he finally decided to man up and be direct about his status was on New Year's Eve. We were in the Castro at a hangout spot called The Bar. I had just finished drinking my second Long Island Iced Tea when he told me he had something important to tell me. I said, “What is it?” He said, “I’m HIV positive”. It hit me like a fist to my face, knocking the breath out of me. I was ripped out of my drunken state of mind and instantly sobered up. I sat there for a while not speaking, letting the news to set in before I said anything. Eventually, I said “I am not mad at you for not telling me, but at some point it would have been nice to have been told. I am not going to dump you, but you are going to stick by my side all the way through.”

Every three months for about a year, I would go to the Larkin Street Medical clinic to get tested for HIV. In the testing room, I would sit in a chair sweating and waiting for the test results. To my surprise my test result always came back negative for HIV. Then one month, my lymph nodes started to swell, and then my boyfriend suggested I head back to the clinic for another test. This time, I decided to go somewhere new to get tested expecting the usual results of negative. However, this time when the nurse returned with the results she told me in a bittersweet tone, “The test indicates that you are HIV positive.” After I got the result they took six vials of blood from my arm to do a more thorough test for HIV. The next week, I returned to get the results of the blood test. The test came back “indeterminate.”

I contacted Larkin Street to inform them that I just found out that I was HIV positive. I told them about my last test being “indeterminate” and they said to take another one at their clinic. So the next week, I went down and got tested again. When the nurse came in, I told him that I just received a positive test result and then another that was “indeterminate.” He gave me two tests, the oral swab and the finger prick. The saliva came back as negative and the blood came back positive.

Immediately after receiving a confirmation, I told my boyfriend that I was in fact positive. His response was to break up with me that same day. This left me feeling brokenhearted, unloved and taken advantage of. I felt like killing myself because I was just diagnosed with HIV and all alone. Our earlier conversation at the Bar meant nothing to me now. One year later, I’m dealing with the reality of being 22 years old and HIV positive, all by myself. I have no family, no friends, no one to lean on.

The process of accepting of my status has been a long and hard road. There are times when I feel like ending my life. The stress and depression that I feel on a daily basis is overwhelming. To cope with my reality at times, I smoke marijuana, drink alcohol and pop ecstasy pills. I feel like an outcast every time I go out because I am almost always under the influence of something. I walk around with my head down so that I will not be confronted by other people. I know I can’t run from my reality but at times I attempt to hide from it. Eventually at some point the time will come for me to face my fears. But till then, I’ll just do me with the hopes of a better tomorrow.
For Beyond the Odds, I'm Mr. Maximus.



log onto www.beyondtheodds.org for more personal stories from young people living with HIV.

Toxicity

Hey folks,

Here's one of our latest blogs. Read more blogs @ www.beyondtheodds.org


Sleeping away on a mid-summer’s night alone in my bedroom with the window opened up halfway, I lay there in a dream state. Dreaming of a life other than my own I explore this other world with such vividness it's almost like I've gone into realm of my life in another dimension. I toss and I turn as I find myself walking through a dark alley with sounds of someone’s unusual footsteps getting closer and closer. I can't see anything but I have the sense that I am being stalked as I walk alone in an industrial warehouse not even knowing where I am going or why I am there. I suddenly fall into a vortex of darkness and start screaming and falling with a fear so strong I feel my body go into a complete state of paralysis.

I am awakened, gasping for air, in a cold sweat followed by a sense of hopelessness. "It was just a dream", I say to my myself. Overcome by extreme thirst and body heat, I reach for a drink of water sitting in a glass next to my bed. I drink it as if I was dying of thirst. I then sit there and stare at the ceiling trying to comfort myself as I feel my heartbeat from within. I sit on my bed and think, “Why me? Why must I go through this? Why must I take medication for HIV that makes me go through this?. Some nights I fall right back asleep. Others, there is no sleep. I take Atripla, the once a day pill used for the treatment of HIV infection. And while the single pill I take every night around ten has greatly improved my health, I've traded in the serenity of a nice evening’s rest for nights of anxiety, despair, cold sweats and insomnia only for the chance at a normal life span.

I was diagnosed with HIV in mid December 2008 and was placed on HAART (highly active
antiretroviral therapy) drugs shortly after getting situated with a primary health care provider. I started taking Atripla February 18th, 2009. The first two months were crazy! I felt so bad all the time plagued by extreme fatigue and a lot of stress. My morale was in the toilet. The regimen, honestly, is a constant reminder of my status as a 25 year-old HIV positive male. For me it’s a daily reminder of this invader in my body; a burden that will never ever go away. Twenty-five years old and I am on medication for AIDS -- it's still really hard to come to terms with that truth.

Yet, as time has progressed the side effects have greatly subsided. I am able to have a normal day relatively symptom-free in exchange for nights of elevated body temperatures, extreme thirst, mood swings and unusual dreams. I think now more than ever it's the physiological impact of taking meds that is the hardest thing for me to cope with. I try and maintain perfect adherence, but hey I am not living in a perfect world and I am not living exactly what I would consider a perfect life. So, I really don't beat myself up for not following doctor's orders, even though I know the consequences of my actions can be life threatening.

That is my reality of having HIV. While the regimens have vastly improved the prognosis of HIV/AIDS to those who are live with this affliction, taking meds is no sweet ride. I am at a point in my life where I really have to make some life-altering decisions. I recently got the news that my liver was sending a warning sign that something may be wrong when recent blood work that came back from the lab showed that I had an elevated level of an enzyme known as Alkaline Phosphatase. My doctors advised me to stop drinking because of the threat of liver damage shown in my blood work. He said, “taking anti-retro viral medication and drinking alcohol at the same time is like dumping gasoline on a fire". Great, I thought to myself. My social life is over! It's already bad enough I have to deal with HIV and now this! But the reality is if I don't limit or completely stop my binge drinking, I am setting myself up for liver damage, cirrhosis or even kidney failure. And it all comes back to the pill I must take every single night in order to have a chance at a somewhat normal life.

So for me at this point it’s one day at a time. Some days are better than others, while the nights
usually are pretty much the same. I've learned how amazing and tolerable the human body can be to suffering. Even though I take medication to suppress HIV and prevent it from ravaging my immune system, in the end I still suffer. From within my soul, I still mourn the shock and fear of having HIV and what life for me will be from here on out. Yet this amazing piece of machinery I call my body miraculously pulls through every single night. What's the purpose of life if I have to live like this? I am not sure, but I know as long as I am on HAART treatment that I will have the time and chance to figure it out and find my purpose in this not so perfect life of mine.

For Beyond the Odds, I am Sergio Mendoza.

Read more blogs @ www.beyondtheodds.org

It's Time to Get Real-sponsible about HIV/AIDS

About 4 years ago, a close friend of mine told me that he contracted HIV. I still remember sitting on the couch, staring into his face as tears poured from both our eyes. Immediately, I was forcibly shocked into dealing with the “HIV reality” a subject matter I felt absolved from ever having to deal with directly. Sure, I had the occasional HIV test, but there wasn't a reason to be really concerned about my status. Well, there was this one time when I knew my “monogamously challenged” boyfriend was dipping out on me. We hadn't always practiced safe sex. So that probably was the only time, I was truly concerned about the possibility of contracting HIV.

Sadly, it wasn't till my close friend notified me of his status that I found myself becoming more knowledgeable about HIV/AIDS and its impact on the African American. I was alarmed to discover that AIDS has quietly become one the leading causes of death for Blacks and Latinos in the United States. And although, it is an epidemic in our communities, we have yet to fully commit ourselves to aggressively addressing the epidemic...maybe due to HIV/AIDS fatigue or lack of leadership? I'm not sure but what I do know is that we can't wait any longer because AIDS is killing us. According to the U.S. Center for Disease Control and Prevention, African Americans make up approximately 13% of the US population, but in 2005 they accounted for 49% percent of the estimated number of HIV/AIDS cases diagnosed.

I was completely shocked and outraged? Are you?

Among youth, while only 15% of teens (ages 13-19) are African American, they accounted for 73% of the new AIDS cases reported in 2004. Comparably shocking HIV and AIDS is the leading cause of death for African American women between the ages of 25 and 34.

http://www.cdc.gov/

Where's Black leadership on this issue? Where's the Black Church?

The failure of African American leadership to address the AIDS epidemic which disproportionately impacts African people more than any other ethnic group in the United States is a moral travesty and socially irresponsible. Is it enough to be outraged only by the United States government's delayed response to a national health epidemic but not our own so-called leadership?

Do you mean to tell me that African American leadership is more willing to challenge our society's use of the “N” and not the HIV and AIDS epidemic? I'm sorry there are no passes being handed out today, tonight and whenever! The “N” word “AIN'T” killing people nor is it creating a biological underclass of individuals dependent upon anti-viral medication for the duration of their life on earth. Come on now.

Frankly, “our” leaderships inability to address homophobia, sexual safety, and patriarchy is a primary reason AIDS continues to impact Black folks disproportionately. Long standing homophobic attitudes in the Black community and church prohibit Black folks from getting “real”-sponsible about AIDS. It's time to be honest with ourselves and our partners about our sexual choices and preferences. Promiscuous and/or bisexual Black men are not addressing how they have contributed to the way this disease is impacting Black women and devastating our community. Where's the love brothas? Black women deal with enough. Don't get me wrong, I'm mature enough to handle if a man I was dating informed me that he was bisexual or curious. Actually, I'd welcome the conversation without becoming judgmental or abruptly ending our relationship out of fear of having to compete with another man. I'd prefer for us to be honest with one another and discuss the importance of practicing sexual safety at all times for the sake of both of us.

As the epidemic continues to grow while religious forces of all color ignore AIDS and the federal government continues to champions abstinence to no avail, people are slowly dying. Black women being the most at risk group, the fact that AIDS is impacting Black women more than any other group might be one more reason, Black leadership is invisible when it comes to addressing the AIDS epidemic. There's no doubt that African American religious and political leadership is concerned about the problem of AIDS, it's the action of not doing something about it that I have the most problem with.

According to the The Kaiser Family Foundation Survey of African Americans on HIV/AIDS about half of African Americans say local schools (49%) and churches or religious leaders (54%) care 'a lot' about the problem of AIDS; by comparison, only a quarter say either actually do “a lot” (28% and 23%, respectively). The government gets lower marks: fewer African Americans say the government at any level -- local (17%), state (20%), or federal (22%) -- cares 'a lot' about AIDS; almost the same percentages as say government does 'a lot' in the fight against the disease (local: 14%; state: 17%; federal: 18%).

Professor Henry Louis Gates, Jr., Director of the W.E.B. Du Bois Institute and Chairman of the Department of Afro-American Studies at Harvard University, suggested in an interview, “ a need for more leadership within the African American community - especially from ministers and other church leaders, medical professionals, and educators to talk about an epidemic which is sixteen times more likely to strike its women and six times more likely to strike its men." Professor Henry Louis Gates, Jr. also asked "Why is it that we are motivated to fight racism in the workplace and the civic square, but are not equally motivated to save the lives of our brothers and sisters from this horrible disease?"

For the first time since the detection of the HIV, women account for approximately half of those affected worldwide. Today AIDS is the leading cause of death in African American women aged 25-34 and the third leading cause of death in African American men in the same age group. More than 64 percent of HIV positive infants are African American, according to the U.S. Department of Health and Human Services. Driven by gender power inequities rooted in a complex design of cultural, socio-economics and politics, the feminization of HIV and AIDS has hit African American women in the United States extremely hard. Our bodies and stories are being violated and forgotten simultaneously in the face of AIDS. There has been a call for us as Black women, Black people to demand an aggressive culturally sensitive approach from the U.S. government in addressing the epidemic now. An equally aggressive approach that would rival our governments attempts in the early 80's, when it was viewed as predominately impacting white males. Hillary Clinton once stated while on the presidential election campaign of 2007, “If HIV-AIDS were the leading cause of death of white women between the ages of twenty-five and thirty-four, there would be an outraged outcry in this country.” Black women must begin to consistently initiate dialogue about our sexuality in a manner that challenges patriarchy and racism in America. We must first educate ourselves then our men, our daughters, and our sons. If we do the math the numbers don't lie, and our silence has allowed this disease to take a toll on our health and spirits. My mother always says, “a closed mouth is never fed.” Now is the time for action.

Okay, so I know it's a lot. Remember, I said it all started from a friend telling me they were HIV positive. It really turned my world up-side-down. So here I am, wanting to not only to inform myself but our entire community. It is what it is and if we don't address AIDS now our tomorrow might not be the change we hoped for. What do you think?

The Real Deal: Facts About Youth and AIDS

"In the U.S., it is estimated that two young people (age 13-25) are infected with HIV each hour.[1]"

The people most affected by HIV and AIDS by in large, are those most marginalized by our political system: poor people, immigrants, and racial and ethnic minorities. Yet the struggle of those communities against HIV and AIDS remain largely invisible to the greater public. In the United States, rates of HIV and other sexually transmitted infections (STIs) as well as of unintended pregnancy are disproportionately high among youth of color, especially among black and Hispanic youth. Social, economic, and cultural barriers limit the ability of many youth of color to receive accurate and adequate information on preventing HIV, STIs, and unwanted pregnancy [2]. Youth of color experience higher rates of medical indigence than do white youth, and they more often confront financial, cultural, and institutional barriers in obtaining health care. For many youth of color, publicly funded health insurance provides limited access to comprehensive, adolescent-appropriate health services[3].
Through 2001, African Americans and Latinas accounted for 84 percent of cumulative AIDS cases among women ages 13 to 19 and 78 percent of cases among women ages 20 to 24.Through 2001, African Americans and Latinos accounted for 62 percent of cumulative AIDS cases among men ages 13 to 19 and 60 percent of cases among men ages 20 to 24[4]. In a study of African American women ages 13 to 19, 26 percent felt little control over whether or not a condom was used during intercourse; 75 percent agreed that, if a male knew a female was taking oral contraceptives, he would not want to use a condom; 66 percent felt that a male partner would be hurt, insulted, or suspicious if asked about his HIV risk factors[5].
Rates of HIV infection are disproportionately high among young women of color, especially those who are members of the working poor and, therefore, lack health insurance and easy access to health care. These young women need gender-specific and culturally appropriate HIV prevention programs[6].
Beyond The Odds: The Realities of Being Young and HIV Positive magnifies the impact that HIV and AIDS has had on low-income and minority youth by empowering HIV positive youth to produce timely, relevant and comprehensive coverage about HIV and AIDS. The “youth journalists” will attempt to open the discussion on this issue by relaying their personal experiences and insight. BTO will explore the intersections between the HIV/AIDS problem and racial and economic marginalization in communities of color, through photography, blogging and poetry.

1. Youth Report 200, White House Office of National Aids Policy
2. www.advocatesforyouth.org
3. Office of Women's Health. Women of Color Health Data Book: Adolescents to Seniors. Bethesda, MD. National Institute of Health, 1998.
4. Centers for Disease Control & Prevention (CDC). HIV/AIDS Surveillance Report 2002.
5. Overby KJ, Kegeles SM. The impact of AIDS on an urban population of high-risk female minority adolescents. Journal of Adolescent Health 1994; 15:216-227.
6. Office of Research Women's Health. Women of Color Health Data Book: Adolescents to Seniors. Bethesda, MD. National Institute of Health, 1998.