Monday Reflection: Born to Fight ...
By Rae Lewis-Thornton
October 11, 2010
Here I go again faced with another dilemma. Living with AIDS is an absolute Bitch. And I promise you if I wasn't the woman that I am, I would just quit. Just throw in the freaking towel. But God never gave me the quitting spirit. I was born to fight!
AIDS is relentless. I can't even describe the uphill battle living with this disease. I want to say something positive, but there is no goodness in AIDS. NONE! I get so pissed when people reduce managing AIDS to a chronic illness. It's much more complicated then that. And I won't even tackle the stigma attached to this illness that no other illness seems to have. If you become infected with HIV, yes we can treat you but, your life will never be the same. That is the bottom line! And if someone tries to tell you it's a walk in the park, they are lying. HIV/AIDS is complicated and treatment is complicated. Prevention is the key to winning against HIV.
So here I am again. The last time I reported on my health I was having some really kick ass stomach virus. Remember my blog No Easy Solution. Well, they put me on a drug holiday to solve my problem. I was off my HIV medication a total of four weeks. And I promise you I was a nervous wreck the entire time. I mean, I had nothing fighting HIV in my body and that was scary. I started back on my meds a week ago today. Yes, I am having major side effects and readjusting to the regime has been a challenge, but I'm doing it. (Mostly headaches, nausea and fatigue.)
So was it worth it? Well, the drug holiday sort of worked. I got some relief. It was so bad I could barely eat a thing. My relentless nausea went away for the most part. My food sensitivity also decreased. I can eat a cupcake, sort of. Ok, so what am I saying? Well, I got better but it didn't go away totally. Some foods still don't sit well and after I eat, I am so sick to my stomach. So tomorrow I see a specialist to see if there is an underlying problem that we missed.
At the onset of my stomach virus, I developed another infection. The one that requires me to go on intravenous medication. I've had it seven times in the last three years. It's left the doctors scratching their heads because the HIV medications are working for me and I shouldn't be getting an opportunistic infection. Those are the pesky infections that people with AIDS get. Some are treatable and some not so treatable. These infections are what kill people with AIDS. With AIDS you have no immune system to help you fight against them. The doctors think that there is a part of my immune system that won't repair itself and as a result I cannot fight this particular infection. It just keeps coming back.
So this time my doctor decided to give me a new treatment to see if it would work. Basically, this infection has been resistant to everything but IV medication. So we tried this new thing and it worked. WOW! It was a long shot but one worth taking at the time. Anything to keep me off IV medication. Things seemed to be going great, I was getting better but then a week ago the infection took a turn for the worst. We believe that being off my HIV medication for so long left me vulnerable. With HIV running wild in my body the medication I was taking was not enough to fight this infection.
So we came to the hard fact that I had to go back on IV medication. The doctor made the calls to get everything arranged only to discover that there is a national shortage. YES, I said shortage. The company has stopped production and is planning to begin again some time soon. Not uncommon when there is a low demand on a medication or if there is a problem with production. So I left the clinic extremely depressed last Wednesday. My doc decided that she would give me three different types of medications to try and treat this with the hope that it would hold me over until we can get the IV medication.
But it only took five days for the infection to grow and I mean grow. So now it's on its way to being out of control. Now this is the deep part. Hope you are able to follow me. The infection got worse a week ago because I was off my HIV medication. Remember, nothing to help me fight it. But now, it's taking a real dive because I'm back on my HIV medication. WTH? Right! It's called Immune Reconstitution. The best way to describe it: the immune system gets a boost from the HIV medication and the infection inside of you fights back by attacking your body. A while back I was hospitalized for seven days and bedridden for a month because of Immune Reconstitution.
Yep. When I tell you that HIV is complicated I mean it! Your best bet is prevention. So what do I do? The doctor is calling around today to see if she can find the medication anywhere. If she can't, she will have to put me on another IV medication that's even more dangerous to the kidneys then the one I typically take. It will probably mean I will have to do a drip of saline after I infuse the medication, which will add some hours to the amount of time I'm on IV daily. I'm waiting to see what it all means. I'm praying for the best medication, but I understand I have to take what I can get so I can get better.
Sometimes I wonder how I hold it all together. But I was born to fight. When I was born to drug addicted parents, I weighed three pounds. I stayed in an incubator for a month and I survived it. I know that I keep it together because God won't let me break. I have to remember my history. My t-cell count was 8 at one time and I made it. So why would I think this is any different.
I have to draw on the small things that bring me joy. Like knitting, reading a good book, fine chocolates, fresh flowers weekly, a cup of tea from the best of leaves with a cupcake, my art collection and of course cuddling with Sophie. The list goes on. Nambi being old and fussy with a bark that drives me crazy, my friend Luke calling me three times a day cause he's nervous and concerned, Audrey inviting me to lunch, Jay coming to sit with me after work, and the family I have created Tweeting, always praying and concerned about my journey. And even the people in my life who I know think about me daily, even when they don't call because of their own journey. Yes, it's the small things that keep me together. So today, I'm grateful for the small things that God has given me to let me know that my fight is not in vain and to bring me some joy in the middle of the battle.
This article originally appeared on Rae's Web site, Diva Living With AIDS.
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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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