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HIV/AIDS Blog Central

Finding the Missing You!

By Rae Lewis-Thornton

January 26, 2012

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

I know ... I know, I've been missing in action, but really it seems like I've been missing a part of me. Like my spirit just walked right out of my body and left a 160-pound shell. Yes, I said a 160-pound shell, but that's another topic altogether.

Let me be honest here, this herpes is giving me the freaking blues. For Real! I'm so sick of being on IV medication I can't think straight. No forget that, I can't even think. When I started this round 36 days ago I was optimistic. It had been three months since my last round and that break was a godsend. Then, when this infection appeared, the doctor and I thought we had caught the infection early and I would only be on IV for maybe 10-15 days; But before I could get the picc line in my arm, the infection got worse and the rest has been history.

The thing about this herpes is this: It's aggressive. Yes, I had herpes before I had HIV, but for the most part herpes was a non-issue for about 13 years. Then I made a transition to AIDS and my compromised immune system couldn't fight it off. Now with years of taking oral medication to keep it under control, I have developed a resistance to all treatment except IV medication. The doctors have concluded that those early days of AIDS destroyed a part of my immune system that cannot fight herpes off.

Any who, I'm coming to the realization that this problem seems to be here to stay. There's nothing the doctors can do to prevent it, so I'm stuck with IV treatment. And this realization sent me to a place of nothingness. I've been missing me: My spirt, my mind, my dreams, my ministry, my hope and even my feelings. Like the best part of me just freaking left.

Accepting that life has changed without my permission and there is nothing I can do is a bitch. It's been over three years now. Hoping that this issue with herpes will just go away is wishful thinking in the face of my reality. It's been even harder to accept because my T-cell count and viral load is very good. On the surface, this should not be happening, but it is. The reality is, I've lived with HIV for 29 years and AIDS for 20. That's almost all the entire epidemic, so truly the doctors have no idea what it should look like for someone like me. I'm living history and the doctors are making sense out of what AIDS looks like as I live.

With all of this to consider, on top of the side effects from the IV medication, extreme fatigue and nausea, on top of the side effects of my regular HIV medications and let's not forget my financial issues, I can't seem to get ahead to save my life, I found myself slipping into a depression. Before I realized it, the me that I know just up and left me. I couldn't write to save my life. My ability to think seemed to be gone and my desire to do anything withered to nothing.

So here I am, trying to find me. Trying to reclaim that part of me that I can own, that I can control. I think acceptance is part of the ball game, the other part is saying it out loud. Moving beyond the shame, denial and secret of it all will help me get to a better place. I cannot change the fact that I contracted herpes in college or that I contracted HIV years later and now the combination of the two has deeply affected my life in the most unexpected way.

The on and off again IV treatment seems to be a way of life for me now, just like taking my 15 pills a day. This is what my AIDS looks like, even with an undetectable viral load. I get it! Now I'm taking baby steps to peacefully co-exist with it all. In part writing this blog today is a major step.

Reclaiming parts of me that I can. So in this attempt to find me, I'm gonna blog everyday, even if I don't have anything deep and profound to say. Saying something is better than sitting on the sofa doing nothing.

Finding yourself in the face of trauma sometimes requires baby steps. The expectations for yourself should be that you do. Doing something will give you fuel to do more. Rome wasn't built in a day and working your way out of a dark place will not happen in a day. But to do nothing is allowing that trauma, that thing to control the parts of you that should be in your control.

Now, let me be clear, depression is also physical, just as it's emotional. So, there's no one thing that will help, but many. Yes, I'm on antidepressants, have been for a while now, but that's clearly not enough. So in addition to the baby steps in life style changes and medication, I'm hitting the treadmill, exercise will help.

There is also some benefit in white tea in helping depression, I'll drink more and I think I'll keep a journal. Not of what's in my head, for some that's good. Writing down what's in your head, helps you let it go. But I'm not in my head, it feels like there's nothing in my head. For Real! So I will instead keep a journal of my daily routine, from the littlest things like washing my tail and putting on fresh PJs. Lately, there have been days where that didn't happen.

I'm going to journal my day just to have a better perceptive of me. I will start with a list of goals for each day. Then I will journal at the end of the day. I will even keep track of what I wanted to do and why it didn't happen. What efforts I've made to reclaim me throughout the day will give me clarity on how far I've come and how much farer I need to go. Depression has a way of taking time away from you, that time is your life.

I think if I can see some movement in my life it will no longer seem lost. Finding Your Lost Self Requires Work! I value me and believe that I'm worth the work. So here I go reclaiming that part of me that I lost to that dark place in AIDS. I know that I know that I cannot let AIDS have all of me! I'm taking me back!

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See Also
More Personal Accounts of Women With HIV/AIDS

Reader Comments:

Comment by: juan (chicago) Sun., Feb. 5, 2012 at 9:30 am UTC
this must be very difficult for you, but you have the strength to keep going, you have doing it for the pass 30 years. you are our (poz people) hope that this disease is not a death sentence. keep figthing and do all the thinks that your energy let you do.
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Comment by: Amos Sergio (Manila) Sat., Feb. 4, 2012 at 6:40 am UTC
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Comment by: Gisèle Vincent-Page (Winnipeg, Canada) Wed., Feb. 1, 2012 at 2:23 pm UTC
Dear Rae, I published a book recently about my 27 years of living with HIV/AIDS. It's entitled Strolling Down Heaven's Gate I had always thought I was the long-timer, but as I continue to research and read, it appears that the over 50's crowd with HIV will make up over half the North American population with HIV. Though treatments have extended many lives, I have always wondered about all the non-medical matters that have been extended as well. Like the stigma, the isolation, the depression and all medical matters of aging. I have a poem that many people have difficulty reading, but like your blogs, it's only telling the truth, well, mine at least.

Hell in Victory (HIV)
Kisses good-bye; waved out the door
sitting at the shore. The water is still rolling.
People want to know just for how much more I'll
be living here for.

We've all been kidding ourselves, I'll be here till death is at the door. Methadone, morphine will squelch the pain, but for that ONE day when there will be no more.

All the threads have been cut around the spool ahead...people like me, when I am cheery and I don't know where to put myself anymore...stand, sit, lay. I have no real reason to stay. I am warm and cozy under this hood. My body is
clean. That is understood. My cuticles are disgusting. Is this purple glut they talk about in signs and symptoms of the dead and dying? They're not the nails you see in Cosmo for manicure ads, you know, manicures to die for.

My mouth feels mucky and brushing my teeth is a chore.

Holidays forever around the corner; it would appear I'll still be around, what a drag for everyone; dead broad walking down the dining room hall.If I could cry and know the river would actually wash these tears for GOOD; I'd lay down and weep for weeks on end if it were understood that this would be the bloody end. Tears aren't painful, nothing more than a wash. Take care.
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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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