(BlackDoctor.org) – Rae Lewis-Thornton. The Diva who is still with us, and still living with AIDS. Another World AIDS Day is upon us, without a cure, and without a decrease in the staggering number of people in the Black community who have to deal with HIV, Rae continues to deliver her honest message of strength and knowledge.
I’m never really sure how much I can take. Lately, each time I say I can’t take not another thing, another thing happens. And then I discover that I’m resilient beyond my own understanding. That’s how I know that the resilience I have is sealed in a covenant with God. I might not understand how I do it, but I understand why. As Grandmamma would say, “Ain’t nobody but God.” If I had to do this thang myself, this Tuesday they would have had to lock me up on the sixth floor ward of somebody’s hospital, and that’s for real.
These last three months have felt like old school AIDS. The thing that makes this disease one bad ass motherfucker, and the wildest thing about it all is that none of this should be happening. Honestly. My viral load is non-detectable and my t-cell count is relaxing in the high 400‘s. So why is my immune system acting like my t-cell is 8? That’s the thing that makes this disease complicated. Nothing is as simple as it seems. It is also the thing that challenges the very core of who you are.
Y’all know the details. I’ve been blogging about it and it reads like a scene out of reality TV. It started with food poisoning, nausea, food sensitivity, diarrhea and rapid weight lost. My body was so toxic I couldn’t tolerate my HIV medications. I had to take a drug holiday and risk drug resistance to my HIV medication to get better. Then after the month long holiday, it didn’t solve the problem. I then had to have an endoscopy and four stomach biopsies. From that they discovered that I had a bacteria infection in my stomach. In the mean time, I got another AIDS related infection that required me to take IV medication, but there was a national shortage of the medication that I needed so they had to put me on an alternative anti-viral medication that causes renal failure. In fact, that particular medication is so old school, my doctor hasn’t even prescribed it in over ten years.
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So this journey of treatment began four weeks ago. The IV medication was a five hour treatment once a week. The day of the treatment I also had to take 8 pills of another medication to protect my kidneys. Together they worked almost like chemo. The day of and the day after the treatment I was so weak that I could barely hold my body up. And then as the week went on I got better, but by the time I got better it was time to have another IV infusion of the anti-viral medication. Then two weeks into the treatment of this infection, I started treatment for the bacteria infection. It was five medications at 11 pills a day, on top of my 15 HIV pills a day. I had reached a whooping twelve different medications, 31 pills a day and on Tuesdays 39 pills a day and a five hour IV infusion. I was on overload to say the least. This is the stuff old school AIDS was made out of. Back to back infections combined with treatment and more treatment. It is a burden to bear but you stuck it out because the alternative could mean death. So I drew on what I knew, I recalled my strength from within and I did it with as much grace as I possibility could. ??
I was sick everyday, all day: weakness, diarrhea, nausea. It never seemed to get better but from somewhere I was able to keep it together. I didn’t play superwoman this time. I afforded my body the rest that I needed to get better. I tweeted, that was the most of my work. Keeping HIV/AIDS in the face of those who need to know the most. I knew that there would be an end. My history with this disease speaks volumes. If I can just hold on there will be light at the end of this tunnel. So that’s exactly what I did. I held on as tight as I could. Drawing on my resilience that is sealed in a covenant with God.
Then on this Tuesday it all seemed to crumble before my very eyes. On Monday I started to have this horrible itchy feeling in my vagina. Yes, I’m going there. I assumed that I had a yeast infection, which is not uncommon for women when taking a heavy antibiotic load like the one I was taking. But by the next morning it became a different animal, a beast.
My vagina became incredibly swollen to the point where my clitoris had transformed into something I couldn’t recognize. My vulva and the inside of my vagina was blood red and I had cuts and abrasions up and down my vulva. So while receiving my IV infusion, I went to see the gynecologist. I was so red and swollen that she had to use the smallest speculum possible to examine me. She looked, another doctor looked, they consulted with the chief of infectious diseases and with my infectious diseases doctor and they had no idea how I had gotten to that place. NONE!
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The only thing they were clear on was that this was an acute centralized reaction to one of my medications. They had no idea why the reaction targeted my vagina, or which medication caused it. They speculated that it was either the IV medication, the antibiotic or the medicine I was taking to protect my kidneys. *sigh* But they did know that with a steroid cream and Benadryl, it will get better over time. I just had to suffer through the right now pain. But honestly, the right now pain is no joke.
After my exam I went back to the infusion room and cried for 45 minutes. I came home and cried for another 45 minutes. Well honestly, I cried most of the night. I just couldn’t seem to pull it together. I felt broken and abandoned, but I held on. Then morning came. And morning has a way of giving you a fresh perspective to an old problem. You become real clear that life is better than death. Even life wrapped in pain is better than no life at all. I’ve come to the conclusion that I’ll take life, everything else is extra. In the end, all I can do is take life with as much grace as I can and have faith for the extra. And history has proven to me that in my moments of despair, I have to draw on my resilience that is sealed in a covenant with God.
By Rae Lewis-Thornton, BDO Contributing Writer
Rae Lewis-Thornton is an Emmy Award Winning AIDS Activist. She has been featured in Essence, Ebony, Jet, O-The Oprah and Glamour magazines. As well as, national television shows, such as The Oprah Winfrey Show, Nightline, Dateline and BET. Rae has a Master of Divinity Degree and is currently working on her PhD at the Lutheran School of Theology. For more information, visit Rae at http://www.raelewisthornton.com.
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