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HIV/AIDS Blog Central

Getting to Better!

By Rae Lewis-Thornton

February 18, 2013

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

The Bible says that faith is the things hoped for and the evidence of things not seen. With this in mind, I keep moving in the direction of better. Better does not always mean what you want, but in the end it becomes the solution that becomes your blessing.

Ideally, I would like to not have HIV/AIDS and all the health problems that are a result of my compromised immune system. Like for real, it would be a wonderful thing if God healed me from this ratchet illness, but that has not been my testimony.

My testimony is one as complicated as my life. I was sick enough that I should have died, but didn't. I have ongoing health issues that do enough to become intrusive in my life at times; just enough to slow me down to a pace that is nothing close to what I consider normal; just enough to intrude on my work patterns; just enough to bring my dream-making to a halt at times and the pace of a turtle at others; just enough to cause enough depression for me to say, enough is enough.

Yep, my testimony has been just enough pain to make me insane, yet through the madness I don't lose my mind; And with that, I keep moving in the direction of better. It seems lately, I've had a lot of the above mentions, those things of just enough to say, "enough is enough."

At the Infusion Center on Friday.

At the Infusion Center on Friday.

In the midst of trying to figure out solutions to help my nerve pain, because looking for solutions in the midst of pain is moving toward better, I got another case of genital herpes. Yes, again, and it has NOT been two months seen I got off that 36-day round if IV medication to treat the last bout.

Now let me be clear. I have a separate infection of genital herpes that I got before HIV. Some stupid shit in college that I have openly admitted to. Over the years I was not really affected by herpes. I had an outbreak maybe once every 3 years. Then, when I made an transition to AIDS 21 years ago, the outbreaks became more frequent -- about every 6 months or so. My doctor was able to get that under control and I was back to outbreaks once every 2-3 years.

Then about 7 years ago herpes became my worst nightmare. As a result of AIDS Immune Reconstitution Syndrome (read more on immune reconstitution), I got the most aggressive herpes outbreak ever. It was resistant to all oral and topical medications. It was as if the herpes was possessed or something. If I didn't know any better I would have said someone put some freaking voodoo on my clit. The only thing that will treat my herpes is an IV antiviral medication.

For Real, in 7 years, it started as once a year, then became once every 6 months, then once every 3 months and now it's looking like once every month and a week or two. The doctors have concluded that my immune system just can't fight this herpes off. They still don't know if this is long term fallout from immune reconstitution.

It is also true that people who have both HIV and herpes can potentially have more aggressive herpes. Also, herpes is viewed as an opportunistic infection for people living with AIDS. (Read more on opportunistic infections.) There are other forms of herpes that people with AIDS can get other than exposure to genital herpes. I've also had my share of that too. Herpes is no joke for people living with AIDS. Back in the day, CMV, another form of herpes, was causing people with AIDS to go blind. I should also go on record and say, if you have herpes your chances of becoming infected with HIV are medically higher.

Mediport drama! Top the first, bottom the second.

Mediport drama! Top the first, bottom the second.

So, while I was on the road 2 weeks ago speaking for National Black HIV/AIDS awareness day my doctor and I were working on solutions to get me to better. It was decided that I would get a new mediport placed a week ago Friday and begin IV medication on that Sunday. It was a great solution that wasn't full proof with no backup plan. #epicfail

The doctors at Intervention Medicine assured my doctor that I would have no problems with this new mediport. But that was not the case and that Sunday when the nurse placed the needle in my port and started the IV drip the pain was so bad that I almost fainted.

So my doctor started working on a plan B, because for me, it's always about working toward better.

Now, Plan B is the pits.com but it's all we got and it is a direction toward better: Let my mediport TOTALLY heal before I try to use it again. What a brilliant idea. Given the last fiasco with the last port maybe that should have been my starting point, but noooo there are some people who can get a port placed and use it in the same day. Obvious I'm not one of those people. Now, it is starting to look like I may have to get this new port removed also.

They started me on antibiotics last Thursday. This has been a weird, crazy journey with mediport. They don't know if I just take longer to heal or is it that my body is just flat out rejecting the port. What I know for sure, I'm in a lot of pain and I'm tired of hurting. This is a BIG fat mess because I cannot get anymore picc lines in the left arm. I've had too many and that has caused my veins to narrow.

Picc line.

Picc line.

So Plan B, I would then get a different antiviral medication called cidofovir to treat the herpes. It's administered in the HIV chemo clinic with a local IV line once a week.

I was depressed as all hell having to get cidofovir. It's a six-hour IV infusion and the side effects are a monster; extreme fatigue and nausea. I also have to take another medication the day of the infusion to protect my kidneys. It's eight pills throughout the day and they also have side effects.

Like for real, that on top of trying to heal from the trauma of getting the mediport this weekend I was sick as shit. Today is my first day even bathing since the treatment on Friday.

But I was determined not not let the solutions from this new problem of the unexpected outbreak of herpes and how they intend to treat me interfere with the solutions to my other health issues that are caused by living with AIDS I talked about in my last blog.

So I finally went to my first appointment last week with the alternative medicine doctor. I have got to keep moving toward better. I also kept my second therapy appointment because with all this new health drama, it's a wonder I don't lose my mind and I gotta stay sane enough to make the best decisions to keep moving toward better.

So in the midst of new problems, I was working on old problems with new solutions, moving toward better.

This is what I know for sure: If I hold onto my faith, even if I can't see the better in my right now, I know that if I keep working toward better then it will get better. That's what faith is all about. Believing that it can happen, even when you can't see it. I also remember that "faith without works is dead." It's unlikely that you will get a job if you never apply for one. Now that's some real talk. My health ain't gonna get better if I don't seek the solutions to make it better.

For sure, with AIDS anything new could come tomorrow. I tell friends all the time. You can't disappear on me because in your month, weeks and even a day absent, I could get sick just that quick. Can't change that fact. That's par for the course when it comes to AIDS.

What I know for sure, if I do nothing, if I stop working on "better" today, then "better" will never come tomorrow. So I keep God at God's Word and work toward better with the belief that the better I cannot see will come when I least expect it.

No matter what you are facing. Keep working toward better. You can't see how that better will happen, nor can you pinpoint the time better will occur. Don't get discouraged if better does not happen in your time. God's ways are not our ways and God's time is not our time. But if you keep working on better, for sure God will bless you with the better that belongs to you.

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See Also
Ten Things You Can Do to Enhance Your Emotional Well-Being
Depression and HIV
Feeling Good Again: Mental Healthcare Works!
More Personal Viewpoints on Coping With HIV
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Reader Comments:

Comment by: Doug Collins (New York, NY) Wed., Mar. 6, 2013 at 5:16 pm EST
You are beautiful! Sharing your story and journey has been inspiring to me. I tested positive in 2010 and also had some downs and ups. What a fine example you are. Best wishes always.
Doug
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Comment by: Streetwyse (Belgium) Thu., Feb. 28, 2013 at 1:42 pm EST
I advice you to destroy the nerves of mucous membranes to render herpes innable to outbreak. It will fix the problem at once.
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Comment by: Carine (South Africa) Thu., Feb. 21, 2013 at 11:22 pm EST
Rae, you are my hero.
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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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