What has been your experience with HIV treatment?
I have gone through a learning process where I came from nothing and I am finally beginning to gain something. I have better doctors today. But yet still I know if I compare myself to a gay white man, I can tell you he has better access to specialists, better opportunity to get appointments in a timely manner, better opportunity to have doctors who will work with him and have dialogue with him and be able to give him information he can really put to use. You know, there are certain tests that, as a woman living with HIV today, I should have already had. I haven't. I am nowhere within the range and the reach that many gay white men with HIV have.
Do you have any other illnesses that have complicated your health and your treatment?
I am diagnosed with endometriosis [abnormal growth of tissue outside the uterus, causing chronic pelvic pain] and fibroids. So I live a life walking around in a lot of pain.
Have you been really ill as a result of this or HIV?
Not within the last two years. I think I have gotten better control over it. Also too, I am someone who does have herpes. I get outbreaks. Again, I don't know if it's just that I don't have enough of the knowledge base or preventative care, but there are times when I go, "Oh my God. I'm in so much pain."
What HIV medications have you been on?
I've been on quite a bit of the cocktails. Within the last year I have weaned myself off mental health meds. My spirituality today has played a very large part in how I handle situations, or what I tap into when I begin to feel overwhelmed.
How do you feel about your meds now?
I understand it a lot better today, so I make my treatment choices with the support of my doctor. It's a partnership.
Any persistent side effects from the meds?
From GI discomfort to skin reactions to neurological reactions. Right now, in fact, I deal with a lot of pins and needles running through my arms and the right side of my body.
I had a negative reaction to Crixivan when it first came on the market, and also to Sustiva. I almost had my children taken away from me because I had a neurological reaction to Sustiva and the social worker just had no clue that this was a new drug the woman is taking, and one of the side effects is that it will affect her neurologically. I was put in the psych ward for eight days. Thank God, my children told the social workers, "Ya'll are not taking us nowhere. Mommy's taking new medications and Mommy's going to get better."
She even commended me afterward. She said, "You have opened up my eyes, because we're going to work with other women who will be taking the same drug, and thank you for giving us a chance to really learn about this drug, because we would have taken these kids away from you."
How would you rate your ability to take your meds on schedule?
I am 95 percent compliant.
Do you have any special rituals or preparations that help you remember to take them?
I put my medications right by my makeup because I love makeup! This is a lipstick lesbian!
How did you choose your current doctor?
I chose my doctor based on me getting their professional background, their knowledge base, and their history of treating people with HIV.
How often do you see your doctor?
I see her every three months.
Do you think you are getting the best care possible?
I know my care can be a lot better.
Is your doctor an African American?
No, she's Caucasian.
Do you think an African-American doctor can understand and treat African-American patients better?
We need to have more African-American doctors who specialize in HIV. I have interacted with some African-American doctors who treat people with HIV, and I gotta be honest, they were not nice. Their bedside manners were horrible. There's a class thing that goes on in the African-American community. When you are a "professional," a classist thing comes up.
I interact with doctors of many different backgrounds. I have interacted with many African-American doctors, and they are very classist. They talk down to us. They wouldn't interact with us. But I will tell them in a minute, "Excuse me. Hello! Keep that class stuff. Take it someplace else, because right now when we're at the table, guess what? I am your equal." So, I address it when I see it.
What kind of relationship do you have with your doctor?
I share with her my feelings toward my care and treatment. If I don't understand something, I tell her, "I look to you to explain this to me. So if I come to have a visit with you and you're just sitting here with a piece of paper in front of you, you know, where is my chart?" And if she doesn't have my chart, I question it. "How come you're here providing care for me? Do you remember what we discussed the last time? Do you remember the last blood work? I need to have a copy of that. And I need to be able to discuss this." I want to know everything that she's learned about me. She's going to explain it to me.
Do you have a particular health regimen that helps you stay well?
My mental health and my physical health, they both must be within the same wavelength because I'm not just going to treat the virus. I am not a virus.
How have your relationships with family and friends changed since you were diagnosed?
My relationships with my family have changed tremendously, and all for the good! One, I have educated my family to the extent where my family knows now that if Michelle is around, at some point, we are going to talk about HIV and AIDS. It's part of our family discussion. It has also brought me closer to family members. It all really helps me to embrace and get other people to embrace who we are, and be able to just learn, love, and share.
When did you disclose to them that you are positive?
I decided to disclose my HIV status because I was just so angry at seeing what discrimination and being stigmatized has done to us as a community. I said, "I'm just not going to take it anymore!" Oprah Winfrey did a show with me back in 1996. I did a show with Ricki Lake. I was just featured in Marie Claire magazine. And it's like, I'm mainstream. We need to have HIV and AIDS again mainstream because it is here and it has not gone away.
When I receive the negative responses, guess what? I brush it off. No matter what, now until the day that I close my eyes and I depart this earth, there are going to be ignorant people, arrogant people. I always say to people, "Whatever you think about me is none of my business."
What is the best response you have ever gotten from telling someone?
That I have given them a chance to save their lives. I will continue to save lives.
What is the worst response?
Someone tried to make me get deported. It was, for me, being rejected by someone whom I had a deep interest in. But again, that was the best thing that could happen because I found out after that she was a piece of work!
How has your sex life changed since you became positive?
It has become exotic! I have learned to eroticize my sex and sexuality. I disclose to people when I meet them and I give them a chance to make a choice. I teach them. I teach them how to enjoy sex, and we do it safely. Honey, I teach people stuff they never thought!
Have you faced rejection from potential sex partners?
No. That's the thing -- it's not what you do, it's how you go about it.
Do you have a policy about if or when you tell a sex partner that you are positive?
If I have a notion that you have some kind of interest in me, I let you know. I want to be able to give somebody a choice if they want to be with me because I'm a public figure! I'm out there.
Even my last partner. I met her at a club, and we're hanging out and she's kicking it with me, and then she says, "You know, let's go outside, I want to talk to you." So we get outside and I said, "Two things I want you to know. I'm a public figure. You might walk down the street and pick up a paper or a magazine and you might see me." And she's like, "Oh, really?" I said, "Well, it's because of the life that I live and the work that I do." She's like, "What?" I said, "I am someone living with the AIDS virus." And her response was, "Well, I guess there won't be no eating for me." I said, "Well, okay darling, we'll take care of that later on down the road." Just like that. And we were together for seven years.
Do you feel that if you practice safe sex, it is necessary to tell a sex partner that you are positive?
Yes indeed. Even if you practice safe sex. Because HIV is so stigmatized -- you could be just seen going into a building that provides services for people who are HIV positive and somebody would assume that you are infected. So you've gotta be able to give this person every bit of opportunity to make a decision for themselves.
Did you make any New Year's resolutions?
No. I'm just trying to lose some weight and move.
What books, movies, music or TV shows have had a big influence on you?
Movies: Imitation of Life.
Books: Maya Angelou. Autobiographies, also. It gives a better understanding of people who have gone through the struggle and how they went about it. It keeps me knowing that I gotta continue wanting more and wanting better.
And music, oh my God, jazz music, because you know, jazz is that thing that I feel to the core. It can be smooth. It can be calm.
There is a flower that inspires me also. The lotus grows through murky, dirty water and comes up to the top. It's one of the most beautiful flowers. I see myself as that metaphor.
What's the greatest adventure you've ever had?
The biggest adventure I've ever had was going back to Trinidad and picking up my son, because I was told by my lawyer, "If you leave the United States and go to Trinidad, you will not be able to re-enter." This is when I was newly diagnosed. My aunts were actually taking care of my son. And I learned that they were not giving him the best of care, so I packed a bag and spoke to my doctor and gave him my mother's address in Trinidad, where I was going to go. I said, "Look, if I don't get to come back to the United States, ya'll are going to have to find a way to get medications to my daughter." And I went down to Trinidad, got my son, and came right back to the United States. It was me and God. I was on a mission, honey, and mission was accomplished.
If you were granted one wish, what would it be?
I wish to see an end to greed and suffering. There's a lot of suffering going on in a lot of ways. Poverty is suffering, abuse is suffering, racism is suffering. Just to end suffering.
Anything else you'd like The Body's readers to know about you?
I'm a good person. I mean no malice toward anyone. I say to my son, "I don't have enemies -- I just have people who don't understand me."
|MICHELLE'S MEDICAL UPDATES|
|CD4+ Count (May 2008): 874 Viral Load (May 2008): < 50|
|Current regimen (May 2008): Reyataz (atazanavir) + Norvir (ritonavir) + Truvada (tenofovir/FTC) once daily -- she has been on this regimen since 2004, and it works very well for her|
Michelle Lopez can be reached via e-mail at firstname.lastname@example.org.
In 2005, Michelle was one of 73 people in the United States who received an HIV Leadership Award from The Body. We interviewed each of the award recipients; click here to read the transcript.
Talk to women about HIV at The Body's Community Center.