My HIV Diary: A New Beginning, Week 39

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Ryan Dixon (a.k.a former porn star Kameron Scott) has started taking HIV medication. He’s keeping a diary of his experience.

Being in my mid-20’s isn’t easy, add HIV on top of that and we have one hell of a complicated life. I’m making the best out of the hand life has dealt me and the decisions I’ve made along the way. Writing helps free my mind. Hopefully these words will help you understand the plight of others like myself, and inspire you to live each and every day in the moment.

Week 39 (May 24 – May 30)

You know the old saying, right? When one door closes, another opens. The first few days in Atlanta have been exciting and scary all at the same time. What has me worried the most is the whole reason I even started this writing venture – my medicine study. Still, with no clear way back to Fort Lauderdale on June 8, I don’t know how I’ll be able to continue in this study. I was told they need me to finish the first year so they can have complete and more accurate data about my experience on the medication. I really don’t know what to do.

Medical options in Atlanta are bountiful, but the only medicine studies around here are ones for people who were naive to medication, in other words, I can only participate by not having been on ARVs previously in my life. I’ve got to establish residency before I can reapply for Ryan White assistance from the state of Georgia, so that requires bills to come in and a nice trip to the DMV. Bills could take up to a month or other accepted documents that come in the mail. I have a doctor already picked out, there’s an AIDS Healthcare Foundation medical facility not 30 minutes from where I live, but I can’t afford to be seen without being on Ryan White. Labs cost upwards of $3,000 and God only knows what medication would cost, if I decide to stay on them.

The decision to stay on medication after the study is complete, or until an acceptable time for gathering data had past, is something I’ve talked about in the past. I still really have no clue what I want to do or the ramifications of either decision. The contemplation is the easy part.

If you’re just now reading this and wondering why I’m in Atlanta and writing for SFGN or how I’ve come to be where I am in my life right now, let me take you back through the last 38 weeks of my life and catch you up on this crazy adventure that is my life.

Day 1

It was a very surreal moment. Staring at two white and one blue pill in my hand brought a flood of thoughts that have passed my mind in the last three and a half years, most of the suppressed. I know that HIV isn’t “killing” me, but what I do know is that I finally need help to get my virus under control. It’s a very sobering thought that I need help. I’ve always thought of myself as a trooper, able to push through anything. That’s how I approached HIV. Apparently some battles are too large for me to fight on my own. I know this isn’t me showing any signs of weakness, aside from my immune system finally giving in. I know taking these pills could induce a psychological burden that makes people feel like they’re ill, even if they’re feeling alright, and truth be told, I’m feeling it. The feeling sucks. I can’t help but be scared as all hell. I need to do this. I need to live. I want to live.

One Month In, Week 4

Yesterday was my week four visit where I got my numbers from week two. So, after two weeks on medication, my viral load went from 4781 to nearly zero. No I’m not cured, but from what the labs at Gilead said, it’s hard to detect the virus in my blood. The virus is still there, but the HIV virus is a retro virus that needs a host to replicate. Since the medicine I’m on is stopping that replication process, the copies of the virus has dropped drastically. There you have it: I’m officially undetectable! I’m so freaking stoked. I definitely believe that all the crap I have been through the last few weeks has been worth it. My doctor said that I was probably experiencing the stomach issues because my immune system had hit a “reset switch.” I’ve gone from wondering what this virus is going to do to me, wondering if I had the strength to fight it on my own, to getting some of the best medical care in the world and having a breakthrough in my treatment for the first time in my diagnosis. I’m a believer now. You can’t always do things by yourself.

Rejected, Week 8

I think stigma affects every single person in the world in one form or another, some of us more than others. As a gay man with HIV, I believe I face a specific stigma from both the gay and heterosexual communities. People think I’m dirty. When a guy I completely hit it off with holds reservations back from me because he doesn’t want to hurt my feeling means stigma still exists. He was afraid of me, he was afraid of my HIV. I just don’t get it. To me, a person is taking the same risk knowing my status as opposed to not knowing some other person. Yet people still think they can get “insta-AIDS” just by drinking after me. I don’t want to sound like a bitchy little queen that’s upset because a cute guy turned him down. I get told no all the time. I’m just over the bullshit reasons that guys hide behind. I’d rather you say you think I’m fat, because at least I could make an effort to lose weight to change your opinion (I would never recommend anyone change their appearance to please others). I’m stuck with this disease. It’s not who I am, I am so much more that HIV, but it’s a part of my life and helps shape the decision that I make.

100 Days, Week 14

“Failure is not an option.”

That quote comes from one of my all-time favorite movies, “Apollo 13.” Being an astronaut struggling to survive in space, just for the chance to survive a descent back to Earth, is a struggle I hope I never have to face. But, much like those men on that spacecraft, my success story is ultimately how I made the best of a failure. I’m growing increasingly tired on the compounding stomach issues I’m experiencing. Feeling no restitution is emotionally draining on me. I just want everything to go away – I just want to feel better. The worst part about all of this is I’m doing so much better than I actually feel. My viral load is undetectable, and my CD4 count is the highest it has ever been. I’m just struggling to control my emotions.

I’ve never been an emotionally strong person, no matter what my façade may be. I’ve touched on it before, but being the emotional shoulder people sucks when you feel there isn’t one for you in return. All I can do now is hunker down and continue this road I have chosen for myself. The good that is coming and will come from what I’m doing is exponential.

Bring on day 101.

Chasing and Gifting, Week 20

My problem with chasers is this: no matter what I read on the subject, I still can’t understand why anyone would want to be infected with HIV. I’ve had to struggle with inner demons when acquiring something I never wanted, yet there are people out there that want it just for kicks. I wish it would have never happened to me, and they hope it happens soon. I’ve talked to people online that have asked me to top them bareback. When I say I can’t because I’m positive, they reply that my status is why they want me to have sex with them. I’ve even actually been in the middle of having sex, and the guy says, “Yeah, give me that poz load.” He lied about being positive, got me to have bareback sex with him, all so I could infect him. I’ve seen a video where a guy inserts a toothbrush just before an admitted positive man, or “Gifter,” had unprotected sex with him. I had a person tell me once that being positive would be so much easier. He said that he wouldn’t be that upset if he became infected because he’d have access to quality medical care, dental care and food bank access. While yes, I do have access to these resources, and yes, it is because I’m positive, I still would rather not have this infection.

Over It, Week 29

Since my last doctor’s appointment over a week ago, I haven’t taken a single pill. As I’m writing this, I’ve purposely missed taken seven doses of my medication and I can tell you why: Plain and simple, I’m tired. It’s tough to have to take pills every day and struggle with it. “Am I taking these pills for myself or am I taking them just because of the study?” These thoughts are something I’ve been struggling with for some time now. I talked to the doctor overseeing my study to express my concerns. I’m mentally exhausted with the burden of having to take my medication to not screw up millions of dollars that are going into this research. I’m thinking to myself, “I’m not doing this for myself anymore.” Truth be told, maybe I’m tired because I haven’t taken my pills. I know back in the beginning I found this new burst of energy in my life once I started a medicine therapy. But now, what is really helping he is also burning me out at the same time. I’m a believer in the power of medicine and the wonders man can do, but, right now, I just want my life to go back to normal.

Searching for New Life, Week 30

I wrote last week that I had taken a “medicine holiday,” as it is often referred to as by healthy professionals. I do want you all to know that I have started retaking them, but only at the request of my doctor and boyfriend. I really didn’t think I’d be this burnt out from my meds this early on, but truth is I am. I figured after the study I would take a break for a while and see what options were out there for me, not just over 200 days into the study. I’ve never been a quitter in my life, and I certainly don’t want to start now. I’m taking these medications now to appease the ones around me, but I still haven’t come to terms with what I really want to do. I know I should keep taking the medicine, but why? I need to find an answer deep within myself that answers that question, and not just for the obvious medical reasons. While my boyfriend noted that my energy level has come back up since I started taking the pills again, I still feel worn out – mentally not physically. With this time of reflection and celebration of new life, I want to find the inspiration and new life to keep on taking my meds. I think I’m secretly hoping I find it.

There you have it. This tough and enlightening road has been one fun ride, and the ride isn’t over. I have a lot of things to still sort out here in Atlanta. This change in my life is for the best but it’s going to take patience and determination on my part. With the help of my friends and the kind words I’ve received from readers, I know I’m going to be fine. The only question that remains is: What’s next?