The Truth About My AIDS! Rae Lewis-Thornton

Rae Lewis-Thornton: Diva Living With AIDS | February 26, 2014

When people look at me they don't see death. In fact, people really don't see illness. Even when I'm having a bout of something or other, I'm often told, "girl, but you look good." I've always had mixed emotions about that over the years.

This is true mainly because it keeps people in denial about the support that I need on the one hand, and on the other, young people look at me at a gig and think, "AIDS ain't so bad, she looks great."  They think I got it going on, which of course I do, but having AIDS is no joke and requires a lot of work. For sure, my life would be different if I didn't have AIDS. For these reasons I am so candid about my journey. I want people to get the full understanding of this disease. Pictures in my case, can be a tad deceiving.

Which brings me to the point of this blog. Yesterday I posted the article that The Elizabeth Glaser Pediatric AIDS Foundation did on me and my work for Black History Month. I was so honored that such a prominent organization thought enough of my work to feature me. You can read the article HERE. Anyway, they used the Essence cover in the article, lending an historical perspective on my work.

A woman had this to say in the comment section. She also indicated that she been HIV infected for 16 years.

My heart skips a beat to date when one is physically fine but says they are "Dying of AIDS but fighting stigma... tying to add those words up but nothing comes still. My Step-father died of AIDS, he had MDR TB and PCP Pneumonia. My uncle died of AIDS he had PCP Pneumonia and Crytococol Meningitis, My cousin Died of AIDS and she had TB, Pneumonia, Malaria and Herpes Zosta.

Let me say, I felt on one level that there was a bit of a challenge in what and how I do what I do. The shade hit my spirit like a ton of bricks. I'm so glad that God speaks to me when I least expect it. *SMDH* People always coming for me. After I answered her politely, I pulled out the laptop. I see this as a teaching moment. Instead of seeing a lair living a contradictory life, why not see that I am a walking miracle? I'm always sadden when another person comes for me who is also infected. Mainly because I've lived the span of this disease and have lots to offer. Secondly, this was a celebratory post, why bust my bubble?

First off, this is what I got from the comment:

She was saying that I am living a lie. On the one hand, I say that I'm fighting stigma, but on the other hand, I say that I'm dying of AIDS and yet I look perfectly fine. The fact that I say that I'm dying leads to the "Stereotype" that people with HIV/AIDS are dying. The fact is, if a person is not diagnosed early or does not get into care and stay in care and treatment, they will die from AIDS related infections. That is an undeniable fact. Unless they get hit by a bus first.


But let me take my case from the top. This blog is long, I'm sorry but I had to be thorough. The Essence article was written 20 years ago this year. While I saw the picture before it was published, I never saw the finished copy. So when I received my copy of the magazine from Essence I was jarred by the caption, I'm Young, I'm educated, I'm drug-free and I'm dying of AIDS. I stood in my living room, stunned, Essence had declared that I was drying. I understand today, together we made history and changed the discussion about HIV/AIDS among black women and I will always be proud of this boldness.


My doctor had never told me that I was dying, but Essence had dared to speak a truth that no one else would. At the time that I wrote the article, my T-Cell count was 66. Because magazines are ahead of themselves, by the the time the article was actually published, my T-Cell count had dropped to 30.

Back then, T-Cell counts and infections were all we had to go on to measure the disease. Viral Load is a newer understanding of HIV/AIDS and disease progression.

Let me explain, an AIDS diagnosis is a T-Cell Count of 200 or below. The average person has a T-Cell count of 800-1000. So AIDS is a T-Cell of 200 or below or and Opportunist Infection (OI), which is an infection that is particular to people living with HIV/AIDS; there are a list of them Click HERE to read.

Back then, if you made a transition to AIDS within 3 years you were dead. That shit was real!! HIV anti-viral medications were mediocre at BEST! There was no expectation for life. The best a doctor could do was try to prevent infections or catch them early. Some of the AIDS related infections are treatable, but for sure many will kill you.

After the Essence article was released, for sure I took some flack from the AIDS community. "How dare you say that you are dying!" Was said to me, "that only helps to create stigma" but the fact of the matter, clinically I was. That was a hard fact that I had to live with. I remember another female AIDS Activist here in Chicago stop speaking to me for over 15 years. Then about a couple of years before her death, she just started back out of the blue. I was happy that she had made peace with whatever her issue was with me. I always liked her and thought highly of her work.


Back then and today, my response is clear and concise. Don't make me lie because you can't handle my truths. To deny the truth would be in fact to live a lie and the purest that I am just won't let me.

Let me be clear, the two years following the Essence article I was on the timeline to an AIDS death and to most people I looked pretty damn good.

I will call the row!

1) I have had 3 bouts of PCP (Pneumocystis Carinii Pneumocystis) AIDS Related pneumonia. I was hospitalized 2 times and on one of those, I stayed in the hospital like 23 days.

2) I had AIDS Related Wasting, I had no appetite and could go all day and not feel hungry. I went from a size 12, to an 10, to a 8, to a 6, to a 4, to a 2 to a 0. The suit I'm wearing up top was a size 2 and it was to big, but I look good. LOL, What a contradiction. I can't explain it, but GOD. Most people with wasting looked like they were wasting away. The miracle of my physical beauty cannot be denied. I never had any issues of my hair thinning or skin discoloration that is common among people with advance AIDS, but I did have really extreme dry scape and extreme dryness in my face. I must have gone through tons of shampoos and face creams back then.


3) I have AIDS Related Peripheral Neoapthy. I have tingling, numbness and neuropathic pain in my feet, toes and up to my legs. Sometimes in my hands. Back in the day it was so bad I would take my shoes off and rub my feet no matter where I was at.

Today I still have this numbing and tingling in my feet all the time! BTW, with an undetectable viral-load it should have gone away, but it never did.  I just don't complain about it anymore.  So most days my feet have some tingling and numbness.

4) Women with AIDS have a host of Gynecological issues and I was no different. I had Dysfunctional Uterine Bleeding. My periods would come a week early. I would have 2 periods in one month. Sometimes I would bleed for an hour and other times days. Once I had a cycle for 22 days.

I had Cervical Dysplasia, which is a precursor to Cervical Cancer. My doctor believed early that women with HIV had different issues then men with HIV, that's why she founded the Women and Children HIV clinic in Chicago. As a result, she gave me a pep test every 6 months and we caught  the Dysplasia early.

I had yeast infections back to back. No sooner than I was finished with a 7 day treatment, 3 days later it was back.  I contracted genital herpes in college and for the most part it was not an issue. I had outbreaks at most every 3 years. Then, when I transitioned to AIDS, herpes outbreak were common every 3-6 months or so. No immune system meant that I couldn't fight these infections off.


5) Speaking of Herpes, it has been the one Opportunistic Infection's OI that we have not been able to conquer with me. Now let me explain. Genital Herpes is an infection in and of itself. I contracted it in college. BUT when my immune system became impaired from AIDS, fighting off herpes became a nightmare.

First, right after I transitioned to AIDS, I had more frequent outbreaks, so I started taking Acyclovir to prevent outbreaks and we seemed  to have it under control, for a while at least. But even as my immune system got better, the herpes then got worst and started wrecking havoc on my body. They called it Immune Reconstitution; i.e. the lingering infection fight back to the immune system getting better.

I had Herpes Zoster! I woke up in a hotel room one morning and I couldn't walk. I had one herpes sore on the back on my leg, but by the end of the day, I had sores from the top of my butt to the bottom on my feet. The Herpes Zoster was so bad, I couldn't walk for over a month and had to take morphine for a month just for the pain. I had the post-herpetic nerve pain for almost 2 years in my legs and feet.

Then after that, I developed aggressive drug resistant herpes genitally. I have been hospitalized 3 times for it and have had to take IV anti-viral medication over these last 7 years well over 20 times. Typically, when I'm having an outbreak, herpes also attacks my nervous system. I have nerve pain in my back, face and head. Lastly, I had a herpes mass that had to be cut out the opening of my ass. We are still scratching our heads over that one. Herpes masses are very rare. The doctors have just concluded that the early damage done to my immune system will not let me fight herpes off.

 

6) AIDS related fatigue was a major issue for me. I never had any energy. If I slept 12 hours it felt like I hadn't been to sleep when I woke up. Most days I had to nap. Back then I was on the road speaking somewhere between 10-15 times a month. I'm not sure how I made it through but GOD!

When I got off the plane in a city to speak, I would have to take a nap in order to have enough strength to speak. Once I returned home, I would crash basically until I went back out on the road. I rarely cooked or did other activities. The quality of my life was the pits. All I did was speak and sleep. I was on a mission to speak to as many people as I could before I died. It was my only priority and my sacrifices were only to my ministry. Today even, I have at least 1-2 days of struggling to get through the day.


7) At my lowest, my T-Cell Count was 8! My doctor was doing everything she could to keep me alive. At one point I was on 31 pills a day and the side-effects were horrible. I was sick from AIDS related illnesses and sick from the side-effects from the HIV medications; diarrhea, fatigue, nausea, vomiting. I even had night sweats that I could do nothing about. I lived in fear of new infections daily.

Somedays I didn't know which way was up. I became mentally and emotionally exhausted and after laying on the floor shitting on myself all day, I had enough. I called my doctor and told her that the quality of my life was more important than how long I live. "I quit!" I said to her that Saturday. And she stared screaming at me, "You have got to give me time!" She had never told me that I was dying, but I could hear it in her voice. If you quit you will surely die. That scared the fuck out of me. I agreed to keep going and going and going.

8) I have taken the first generation of all the HIV anti-viral medications starting with AZT then on onto DDI, DDC, 3TC, Zerit, Tenofovir, Epivir, Emtriva, Crixivan, Saquinvir, Kaletra, Norvir, Prezista, Viracept, Viramune, Isentress, and, yes, Fuzeon the injectable HIV medication, right into my stomach 2 times a day.


Then I also took along with my HIV medications, medications to prevent infections, for PCP I took Bactrim, Atovaquone, Dapsone. I took medications to prevent, Yeast, MAC, Herpes and an appetite stimulate, on top of drinking Ensure because I couldn't maintain muscle or fat. I needed all the help that I could get.

New medications kept coming and my doctor Mardge Cohen kept me at the cutting edge of treatment. It was teamwork at it's best. She made sure I had everything I needed to keep me alive and I did everything I was instructed to do. I did this no matter how sick it made me or the energy and time that went into it, or how emotionally drained I was. We both crossed our t's and dotted our i's. I remember when I did the Oprah Show, it was a show on long term survivors with AIDS and at that point I have lived about 6-7 years with AIDS and with HIV for 14 years -  that was some major shit back then to live that long. I tell people that my surviving was a combination of God, a great doctor and my compliance resulting from a will to live.  For sure people who had mediocre care or didn't comply didn't survive. Then some people just didn't live long enough to benefit from the newer HIV medications.


Let me clear up a few more things while I'm at it. Once you make an AIDS diagnoses you always have the AIDS diagnoses. Even if your T-Cell count goes back up and your Viral Load is undetectable. It's like this, the damage to your immune system cannot be undone. This is the main reason I still have so many issues. Damage to my immune system from the early days is what it is and cannot be undone. While I am living with this disease, I have on-going issues that people infected later and on top of their care, should not have. At this junction all we can do it try to prevent, or should I say slow down, new damage and stay on top of whatever issues that I may have.

The fact of the matter, AIDS does developed a resistant to HIV medications that's why there is no cure. How do you stop something that is always adapting. So the best thing for a person with HIV is to stay on top on the game.  This is why people with HIV must comply with treatment, to prevent drug resistance. The longer you live with HIV for sure you will develop some resistance to treatment. You do more damage when you don't comply. One pill a day could turn into 3, 5, 7, 10 a day depending on your particular HIV strain.

Lastly I've mentioned Viral Load. Back in the day, we only had T-Cell counts as a measure for disease progression. Then medical science discovered that the the more virus you have in your body the greater your chances of being sick. A persons Viral Load is how much HIV has copied in your blood. For example, when they first developed the test for Viral Load, mine was 475,000.

When a person develops resistant to HIV medications the viral load will go back up and the T-Cell's drop. For sure people are still drying from AIDS in the United States, mainly because of a late diagnosis and or a non-compliance with treatment and care.

This picture to the right, My T-Cell count was 60 and I had PCP. After I finished speaking to those high school students in Waterloo, Iowa, I got on a plane and was admitted into the hospital when I returned back to Chicago. I know that I don't ever come across as sick. Back then you couldn't look at me and tell that I was on a time line to death, but I was.  That day speaking my breathing was labored beyond understanding. I just pressed my way.

I have not used the language of "dying" in well over 15 years.  Today, I have a undetectable Viral Load, which means, based on the standard test, the amount of virus is so low we can't give you a detectable count. It's usually less then 50 - BUT it does not mean its gone! HIV NEVER leaves your body. Once HIV develops a resistance to a person's medication they start to experience drug failure and then it's time to go to the next thing. By the way, My T-Cell count is 486.

I remember that I used to go to the high schools back in the day and ask the freshman to stand. I would announce, "By the time you graduate, I will be dead." Based on everything we knew about HIV 20 years ago, I should have died. Those students are in their 30's now and they hit me up on Facebook and Twitter and Say, "Ms. Thornton, you said you were going to be dead, and I'm 32 years old. Thanks be To God that you are still here." I'm so glad that those young people can see the miracle of my life.