Little Soldiers and SuperheroesMarch 30, 2010 March 25, 2008. At the time, I called it "the first day of the rest of my life". My medical chart refers to it as the day I started anti-retroviral therapy. Either way, it's an anniversary I will certainly never forget. As I look forward to a regimen change in a few weeks, I can't help but feel a bit sentimental. Immediately following my diagnosis, I wanted to have blood drawn to find out just exactly how much damage the little horror that now inhabited my body had done. I assumed that because it had to be a relatively new infection, I felt great and had a healthy lifestyle, that my numbers would show strong. From everything I read, it could be years before I needed to start HAART. By then the medications would be even better and hopefully with even less side effects. Ah, but we all know what happens when you assume. With a CD4 count of 242 and a viral load of 114,000, I realized that too soon my life was going to change in a big way (by starting treatment). To be quite blunt, I was scared shit-less. The morning of 3/25/08 began with some gentle yoga, a hot shower and a substantial breakfast. I sat alone a while with those colorful looking, life changing pills. I whispered a short prayer, "God help me" and swallowed them with a big glass of milk. I looked deep into the mirror and wondered if I would ever feel the same again. I wanted to cry but the clock on the wall said it was time to face the world, and so I did. In the months that followed I have to admit, I did better than I expected. I ate lots of fiber, fruits, veggies and lean protein, took supplements, exercised regularly and started keeping a food journal. (I noticed there was a definite correlation between what I ate and how I felt). Physically I was doing okay, but emotionally, I was a mess. Nightly bouts with insomnia just gave me more time to think. One day I was crying uncontrollably; the next, I was stable; the third, I was literally throwing plates against my kitchen wall; then followed by another "good" day. I felt like my mental state was controlled two "puppet hands"; every few hours, one spun the emotion dial (happy, sad, angry) and the other, the volume (1 to 20). It seemed like those damn hands were running my life and I figured my meds just had to be at the root of it all. On July 14th ( I saved the email), during an especially difficult period, I sent my physician the following question: "This might sound completely ridiculous coming from someone that just started meds 4 months ago but when do you think I might hope for a treatment interruption? Whatever the answer is, I need to have *something* to look forward to. I have done everything I can think of to live better, but I simply hate taking these drugs because of the way they make me feel. I promise to take them every damn day as prescribed but I sure as hell wish I didn't have to." His answer forever changed the way I viewed my meds. He replied: "While I sympathize about feeling burdened by taking medication, we have ample, and multiple, studies showing that treatment interruptions create a significant increase in adverse health events of all kinds. In the Swiss cohort, even people who had a mere 30 day break were easily distinguishable from people who had never interrupted their virus suppression. This is a mental thing. I suggest thinking about your medicines as "little soldiers," instead of "little devils." The little devil in your system is a virus that, left uncaged, will grind down your immunity, not to mention the rest of you. Your meds are helping you." Now, I don't know how something so simple could make me feel so differently ... but it did. My medications aren't the enemy ... HIV is. Adherence made sense if I wanted to keep the virus caged and protect my body from further damage. My little soldiers have been there every night, ready to do battle, and will be with me until the war inside me is won. So maybe I wouldn't go as far to call it a "happy" anniversary, but I do realize that with CD4 counts over 700, I have plenty to be thankful for. A poz veteran once called his HIV meds "the ticket price to enjoy the ride called life". I couldn't agree more. By the way ... have you hugged a Superhero today? Read more of A Positive Spin, Philip D.'s blog, at TheBody.com. This article was provided by TheBody.com.
Comment by: A
(Italy)
Fri., Oct. 21, 2011 at 11:20 am EDT Thanks, going to start soon. I want my first day being as yours.
Comment by: Adam
(New Orleans)
Tue., Sep. 20, 2011 at 11:18 pm EDT Thanks for your story - it is eerily similar to mine in that I believe I was recently infected yet my CD4 count is very low. I literally have the same count you mentioned, 242. Starting meds as soon as they get 'em to me. Replies to this comment:
Comment by: Francis
(Geneva, Switzerland)
Wed., Sep. 14, 2011 at 3:59 am EDT Hi, Thanks for sharing your story. Little soldiers they are indeed (but I disagree with winning the war, they just keep the enemy far enough away, but he will always be lurking). As for me, I am a 47 y.o. married man who did back in 2006 something stupid (and irresponsible at the same time), resulting in HIV+. With lots of questions and little answers to start with I now have lots of answers and ways forward and little questions left. One of the major changes was the starting of HAART. The fear of infecting one of my loved ones (teens and wife) by accident, the psychological burden of being a “mobile virus” wandering through town, the fear of what those horrible side effects would do to me and the unknown of what the virus was doing inside my body while I was not controlling it (but it was controlling me) made me decide to start in 2010 on a voluntary basis treatment. I had gained sufficient self-confidence again to say “if others can do it, I can do it too”. And starting meds was one of the best decisions I took in my life. I have a great job and very good insurance but still never missed a day at work when starting meds. And I have never regretted starting, but then I must say that I am lucky not to suffer from any side effects (am on Sustiva and Truvada), except for some interference when having a late dinner, which I avoid. Health-wise I could probably have waited for many years but psychologically it was not an option anymore. I am an advocate of starting treatment early enough.
Comment by: KT
(Colorado, USA)
Tue., Aug. 23, 2011 at 10:17 pm EDT Hi Phil, Just wanted to drop you a line to let you know that your story gave me chills. I've always thought I was sort of invincible...climbing rocks, hiking through bamboo forests, running a zillion miles in one shot, blah, blah, blah...but having HIV is leaving me a bit overwhelmed. Although poz since 2006 and still very healthy, my focus now is on how and when to begin fighting the little demons in my own bloodstream. It freaks me out thinking of the damage it's doing to my organs, not to mention how my new BF (who is also poz, thank god) will handle possible mood swings when I do go on ART, especially when I'm emotionally "sensitive" anyway. But...it's time. I have a good CD4 count, as well as a low and stable viral load; and it'd be nice for that to be as bad as it ever gets. Becoming "undetec" is a holy grail and I think your story helps me understand that ART truly can be the best way to bring the big guns to bear on my virus. Thanks again...your words meant a lot. -KT
Comment by: Melissa
(Oklahoma City, OK)
Mon., May. 17, 2010 at 9:32 pm EDT Thank you so much for writing this blog. I was also diagnosed in 2007, but I just got meds today. I'm sitting here looking at these bottles, wondering why in the world to I have to take these damn pills the rest of my life. I'm a good person.... Anyway, I never thought if them like that before, Like little soldiers. I just thought of it like a never ending cycle. So, I'm going to start my meds in the morning, with breakfast everyday. So, again thank you for changing my mindset. I may be OK afterall.
Comment by: James Paul
(San Francisco, CA)
Thu., Apr. 1, 2010 at 3:52 pm EDT Glad you are here to mark this anniversary. I wish you many more healthy happy years of life. I have been on this ride for about 23 years, and it is as enjoyable as your state of mind allows.
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