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Herpes ... Again ...!! Day 43! Count Down to 50!

By Rae Lewis-Thornton

April 10, 2012

This piece originally appeared in Rae's blog, Diva Living With AIDS.

I was hoping and even praying that I would get through this 50 day count down to my 50th birthday without being sick; without herpes. But I guess that prayer didn't get answered because I'm only on day 43 and I have 3 herpes lesions right there on my clit. Yep, Yep and it hurts like hell, if this is what hell feels like.

I keep telling you that AIDS has no compassion. It don't give a fuck about your life and yet some of you are still out there having unprotected sex like all you have to do is pop a pill if you become infected. For you new comers to my blog, I have an on-going issue with herpes.

In a nutshell, I have drug resistant herpes. I was infected with herpes before HIV and in those early years I almost never had a herpes outbreak. But for some reason, in the last 4 years herpes has wreaked havoc on my life. The short of it, the doctors think that there is a part of my immune system that was so damaged from my early days of AIDS that now I just can't fight herpes off. They consider this an AIDS related infection because if I didn't have AIDS, I wouldn't have such aggressive herpes. While AIDS and herpes are two separate illnesses, one has made the other one worse. And by the way, if you have herpes, it's easier to become infected with HIV.

For me, NOTHING but an IV form of anti-viral medication has worked against my herpes. I've tried everything under the sun and the moon . Trying to come up with an answer, I've had more biopsies and cultures on my vulva that I care to remember. In the end, nothing works but Foscarnet and Cidofovir IV medications. I just finished 49 days of the medication back in February, 2 times a day 2 hours each and the side-effects are not cute.

I knew I was headed in that direction, but praying that it wasn't so. About 3 weeks ago I started to have nerve pain again in my back and legs and had to start taking medication to help the pain, yet again.

In a nutshell, I have peripheral neuropathy that comes and goes. We also think it is caused by herpes attacking my nervous system. There's no real way to nail all the causes down, but we understand the core problem. It feels like someone is sticking pins and needles in my back, feet and legs.

Any who, here I am again. The doctor is trying to figure out what course of action for me to take this time around. She is trying to get me in a drug study that is an oral form of one of the IV medications. Lord knows I don't want to go back on IV medication so if they let me in the study I'll do it. This is big for me because I have never been in a drug study in all the years of my infection, but when you are at the end of the road like I am, you don't have a lot of choices. I don't want to seem ungrateful, cause I truly am grateful that there is something else to try, but I'm not excited about this one bit.

I will keep you updated but I am not happy. I'm trying not to allow this to affect my overall attitude as I continue to count down to 50. I feel kinda all messed up. I'm happy to be alive but I wish it was under different circumstances.

Like why couldn't my health stay good just until my birthday was over. WHY? But in the real world there are sometimes no answers to the why.

I keep trying to get it through to you, that there are choices you make that will alter your life forever and the best you can do is try to keep it all together, as you fight for your life. I'm going to do whatever I must to keep me happy during this period. But honestly, this new outbreak and the possibility of a drug study has knocked the freaking joy out of me. Pray for my health and my spirit.... Maybe after prayer and a few days to digest it all I will regain my spunk. I hate AIDS.... For Real! For Real!

I hope that you get it! Some things cannot be undone! If not for the Love and Grace of God and my will to live, I think I would lose my freaking mind with this never ending disease that zaps everything from you that it can; And now it's working on my birthday joy and the miracle of my life.

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See Also
More on Herpes


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Rae Lewis-Thornton Speaks

Rae Lewis-Thornton

Rae Lewis-Thornton

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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