Monday Reflection: Weathering the Storm
By Rae Lewis-Thornton
February 20, 2012
This piece originally appeared in Rae's blog, Diva Living With AIDS.
Well it seems that I have weathered the storm yet again. The herpes has gone into hibernation. I'm off the IV medication and the picc line came out of my arm on Saturday. Of course I say hibernation because the herpes virus never really leaves the body and I have no idea when it will rear it's ugly head yet again.
After being on IV foscarnet for 49 days, 2 hours a day, 2 times a day, I welcome any break. It seems that this is what my life with AIDS has become. My doctor and I were talking about it last Wednesday, that is, for people like me, who have lived with HIV/AIDS for so long; We just don't have any real idea as to what this should look like. It's like, as I live, I am a walking experiment. By the way, I've been infected for 29 years and I've had AIDS for 20. I have known my HIV status for 26 years.
The other thing, we just don't know what the long-term impact on the body is for people like me who took the first generation HIV medications, Nucleosides. They were so very toxic, but they were all we had. And I took them all, AZT, 3TC, d4T, ddC, ddI, Zerit. I took them as monotherapy and then as a combo therapy, including Ziagen, Epivir,Viread in that same category. Of course, as time went on they started treating us with combos of other classes of HIV medications. I've also taken, Norvir, Emtriva, Viramune, Sustiva, Crixivan, Kaletra, Prezista, Viracept, Fuzeon and Isentress.
Yep I've taken 19 of the HIV medications in some form or the other, not to forget the host of medications I took in those early days to prevent AIDS-related opportunistic infections, like chronic yeast, PCP (Pneumocystis carinii [jiroveci] pneumonia), wasting syndrome, MAC and herpes. At one point I was on 33 pills a day. I mean I took a lot. I took 4 different types of medications just to try and prevent PCP. They were Bactrim, Dapsone, Atovaquone, Pentamidine aerosol and eventually Pentamidine intravenously because I still got PCP 3 times. By the way, PCP is the number one infection that kills people with AIDS.
Yep, I would say I've weathered the storm, over and over and over again. My T-cell count was as low as 8 at one time. We have no idea what the long-term impact of that has had on me either. I mean, for one's immune system to be at the bottom of the road. What permanent damage that's been done is an unanswered question.
Yep, I'm a walking experiment. This is one reason why we think I can't fight off herpes no matter what we try (other than IV foscarnet); damage was done that cannot be reversed and while HIV medications give me a boost now, they can't undo what's been done.
But now that treatment has advanced so much and my T-cell count is 586 and viral load undetectable, I still seem to be stuck in this place I've always been, fighting to keep my head above water. Now don't get me wrong, I love my freaking life! I love living! As long as I got breath in my body, I'm gonna fight this bitch AIDS. And while I know there is sun behind the rain, the storm is a bitch to pass through. I never understood those weather people who chase storms. Who in their right mind would give up calm for chaos?
But I've learned to take it all in stride. This round of IV meds kicked my ass; straight-up, with no chasers. No matter how hard I tried to keep it all together, there were days when I thought I couldn't take another day. But in the end, I somehow found a way to make it through that moment when the storm seems to be worst, waiting it out until is slowed down to a drizzle.
I've learned waiting it out is key. It does not matter how dark and hopeless it may seem in that moment, there is always a tomorrow and if you just hold on long enough, the sun will break through the clouds.
So here I am again, done with IV and trying to play catch up on all the things that were so very much neglected, from my blog to cleaning my house. Yes, I'm still struggling with some other health issues that have added some drama, but this I know for sure: If I weathered the last storm, and I did, I can weather them all. So I press my way each and every day, knowing that God created the rain and the sun and everything God created is good. Without a doubt, I know that each storm will pass over to make room for the sun.
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Rae Lewis-Thornton Speaks
Rae Lewis-Thornton is an Emmy Award-winning AIDS activist who rose to national acclaim when she told her story of living with AIDS in a cover story for Essence Magazine. She has lived with HIV for 27 years and AIDS for 19. Rae travels the country speaking and challenging stereotypes and myths about HIV/AIDS. She has a Master of Divinity degree and is currently working on her Ph.D. in Church History. Rae has been featured on Nightline, Dateline NBC, BET and The Oprah Winfrey Show, as well as in countless magazines and newspapers, including Emerge, Glamour, O, the Oprah Winfrey Magazine, Jet, Ebony, the Washington Post and the Chicago Tribune, to name a few. She earned the coveted Emmy Award for a first-person series on living With AIDS for Chicago's CBS News.
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