I’d been invited to attend a seminar last week, hosted by one of the HIV-advocacy-slash-support groups. I was told it would start last Thursday, and deal with ARV handling for the HIV positive as myself.
In as much as I had wanted to spend time with others like me living with HIV, and learn more essentials on ARV handling, which could not have come at a more proper time, I declined, pointing out that I had been on leave almost the whole of the previous week due to the allergic reactions to Nevirapine, and needed to catch up on work. My loss… supposedly.
Aside from that, I had my doubts from the get-go, wondering why it would need to last between three and five days, and why it was to be held in a resort out of town. My instincts could not have been more accurate.
I had heard feedback from one guy who had attended the event. Hearing words like “kissing”, “walk-out” and “petting” to describe the goings-on was shocking enough. I don’t mean to play goodie-two-shoes, or claim to be a virgin or an angel, especially since I’ve been so vocal about having been tempted to get flirty around the HIV ward at San Lazaro. But I couldn’t understand how this could become a venue for such actions. It baffled me why they needed to hide things behind the guise of a “seminar”, and why they didn’t just advertise it as a flirtfest to begin with. And what other things beyond flirting that may have happened, only God knows. Maybe they should’ve just held it in some bath house or motel to make things easier.
Even more shocking, was hearing the words “drinking”, “drunk”, and “puking” to describe other events in the evenings of the so-called seminar. Call me killjoy, but I distinctly remember every doctor’s reminders to HIV-positive little me to stay away from vices such as smoking, drugs and drinking. So are these so-called advocacy groups fostering venues for temptations and peer pressures that people like me should especially be staying away from?
I acknowledge that the organizers cannot control the actions of every individual there, but I believe they could’ve held the “seminar” in a more proper venue, and confined it to more decent hours to avoid such happenings.
Fine, maybe the participants did learn a lot about handling ARVs, but isn't this like taking one step forward and two steps back?
Needless to say, I don’t regret not being able to attend the seminar.
Advocacy is defined as “Pushing forth a cause or creating a defense to protect the beliefs of self or others”. It’s just sad to realize that this could be the kind of “advocacy” that these so-called advocacy groups are pushing, when they should be steering people like me onto the right path.
These are the times that drive me back into my closet. Whatever ARV information I’ll need, I’ll just get from my doctor.
Tuesday, September 23, 2008
Advocacy?
Monday, July 21, 2008
My Virgin
Another week has passed. I’m still not on medication. Time has flown so fast. I just realized that it’s been a month and a half since I was last at the H4 Ward of the San Lazaro Hospital. A month and a half since I found out my CD4 count. A month and a half since I was recommended to start on ARVs.
For now, I’m trying to go on with the other parts of my life. Work. Family. Friends. Life. All that, while trying to stay healthy. I’ve been doing pretty well, considering it’s the rainy season. No major ailments. No fever. No flu. I’ve been taking my multivitamins regularly. And something else. A virgin is helping me out.
Now before you wonder, I’m talking about Virgin Coconut Oil, or VCO. An uncle of mine gave us a bottle of it last Christmas. I had no idea what to do with it, so it had been sitting on a shelf since December. Until last month, that is.
I had stumbled onto articles online about the anti-AIDS benefits of virgin coconut oil. They repeatedly refer to a Filipino doctor, Dr. Conrado Dayrit, father of former Philippine Health Secretary Manuel Dayrit, who investigated how a component of VCO, Lauric Acid, could inhibit, delay and reduce the spread of HIV. I’m not really sure what further studies are being done to this day, but there is little noise being made on the possibilities of this seemingly innocent fruit.
I remember what Maestro Ryan Cayabyab said in his song, Da Coconut Nut: there are so many uses of the coconut tree indeed. Considering this country I live in is a paradise of coconut groves, it should be reasonable to expect more studies to be done.
Although these are still just studies being done, and there seem to be no conclusive results and no therapeutic claims, I’ll take my chances. I would have loved to be a guinea pig for studies like this. I would love to be an instrument towards discovering a cure for the rest of those like me.
I can only hope that VCO could indeed fight, if not totally wipe out HIV. No harm in trying. Who would’ve thought I’d need help from a virgin?
Thursday, July 03, 2008
Close Encounter
A Monday night out?! It’s the first working day of the week. Very unlike me. This Monday was different. Not for a date, not even for sex.
I had finally gotten some use out of my poz.com account. Prior to this, I had my profile up in the personals, but not much replies from the other Pinoys there. I encountered C on the site.
C and I exchanged e-mails and contact numbers, and agreed to meet Monday night. I have no idea where my fear, paranoia and shyness went at that time. I jumped right in. He said he’d be in the Ortigas area, where I work, so we could meet there. So C and I met. We clicked right away, just while walking to find a place to eat. Living with HIV just gave us so much to talk about. We settled into a table at McDonalds for dinner.
At 36, he’d been living with HIV for 5 years now. He’s on ARVs, and is doing ok. Although he did have to resign from his previous job because of the stress. I wasn’t sure if the stress had affected his health or not. But he’s in the process of applying for a new job now, which is always good.
My two and a half months being poz is nothing compared to his 5 years, and I knew I had much to learn from him. Some of the things were affirmations of what I thought. Others were totally new to me.
He shared with me how he was diagnosed in the Middle East, and even jailed for a year for being HIV positive. I could not help but realize how lucky I was to be here in the Philippines.
He told me about Pinoy Plus, which according to him is a non-government organization which serves as a support group for PLWHAs. He offered to take me there one of these days when I was ready to meet people and had some free time.
He told me to watch out for depression, and explained to me how my acceptance was not the end of depression phase. He recounted how he has been through several cycles of depression and acceptance, noticeably triggered by some unfortunate day to day events or situations.
I complained to him about the doctors practically “requiring” me to have my family with me when I go for my ARVs, and he told me to take my time telling the family, to seriously consider and limit the persons who need to know, and to just settle for the support of friends if telling the family was too big a hurdle towards my ARV medications. It was a relief to receive that affirmation.
We talked about the H4 ward at the San Lazaro Hospital, as well as the Research Institute for Tropical Medicine, or RITM, an alternative venue to the H4 located in Alabang, where he is registered. C explained that whereas it’s free at the H4 ward at the San Lazaro Hospital since it is a government hospital (I wasn’t exactly sure whether everything was free or just services or accommodations or what), at the RITM, discounts of 75% are apparently given to HIV patients.
What interested me most, was the information he shared with me regarding benefits available to people living with HIV in the Philippines. Regarding Pag-ibig benefits, or the Home Development Mutual Fund, he said something like it is an option for people like us to retire and withdraw all accumulated contributions to one’s name. Even better for the Social Security System, apparently, SSS members infected with HIV may opt to file for disability and qualify for a monthly pension. Something he is able to count on while he is unemployed. Very interesting. He warned, though, that filing for disability while I am employed or still connected with my employer may as well mean I’ll be coming out of my closet whether I like it or not. He says it would be more advisable to file when one is no longer connected to any employer. It made sense. He didn’t mention anything about Philhealth, or the Philippine Health Insurance Company, but I’m guessing they have to have something for us as well. This was all good news for me, to know that there are these opportunities for people like me. It might make the future less daunting. But I’ll do more research on it and tell you more.
We ended the evening walking towards the bus stop and going our separate ways on different bus routes. But everything was good. We bid goodbye with hopes of keeping in touch and meeting again.
All that, and more, left me with so much learnings. It was exciting. I was truly fortunate to have encountered and met C. I realized there were so many facets to this “new life” of mine. Much, much more to learn for sure. I’m up for it.
Thursday, June 19, 2008
The Little Birdie
I’ve just had my first official sleepless night. Did something happen? Definitely. Good or bad? I can’t really say.
I’ve been quizzing myself every so often with my What-ifs. One of them was What if I didn’t break up with my last boyfriend? I always wondered if things would’ve been better if I swallowed my pride, just gave him the liberty to fool around behind my back, and stayed together with him. Would this have prevented me from catching the bug? Last night, my question was suddenly answered.
Let’s just say I heard it through the grapevine. A little birdie told me. Well, technically, not exactly little. Impressive actually. I had bumped into this little birdie a couple of times before, but never really became more than just acquaintances. We really had only one real common link between us, which was my ex. The little birdie told me we needed to meet and talk in person, the sooner, the better for me according to him. Next week wasn’t even soon enough. Hmm. The little birdie really got me thinking what this was all about.
So last night, we decided the quickest way was to talk over the phone. After the initial pleasantries, the little birdie came to its mission. I had heard from my ex that he was recovering from a medical procedure performed on him. But the little birdie had more to the story. Apparently, the medical personnel were baffled by the ex’s infection that wasn’t responding to the medication. So baffled that they needed to rule it out. So they did the test. And yes, he was HIV positive. Although the thought had grazed my mind due to the little birdie’s sense of urgency to meet, at that point, I still was a bit shocked.
It was at this point that the little birdie said that I should get myself tested as well. The little birdie had gotten its test too, which was definitively negative since they had not had contact since years and years ago. So I then blurted out that I was done with the test, and admitted I was positive as well. I may just have shocked the little birdie a bit, but definitely made its job much easier. He now understood why I knew so much about HIV and was less shocked than expected.
Apparently the ex was tested around the end of April, shortly after I got my result. He had also been to the H4 Ward at the San Lazaro Hospital. But I imagine that I may have gotten my patient number before he did. My mind went back to the medical chart of 059 who got confined at the H4. Maybe that was him.
He wasn’t simply just positive like I was. He was positive to the point of infections in the mouth and lower extremities. So bad that he was in crippling pain. His CD4 count was in the double digits. In other words, he categorically had AIDS. He was still too weak to start on ARVs. I know my chest was throbbing just trying to imagine his condition. It scared me to be honest.
I haven’t really been pondering too much on who I possibly got this from, but it never struck me to go as far as my last ex. We had known each other since September of 2005, and split up after almost 2 years together. It was after that I decided I’d enjoy singlehood for a change and let loose. So it was always that time after that relationship that I considered as my most risky.
It’s definitely presumptuous of me to think that I got it from him. For all we know, he may have gotten it from me. Or our infections may not even be directly linked, and just be coincidental. Only heaven knows.
For now, nothing much changes. I'm even more thankful now for the relatively fortunate condition I am in. Just a lot more to think about. I appreciate the effort the little birdie made to tell me. It was just concerned and bothered by its conscience. But don’t expect any confrontations to take place between me and the ex, because technically I should not know anything about it. I just hope he gets better. As for the little birdie, just as my secret is safe with it, its secret is safe with me.
Fly away little birdie… and thank you.
Wednesday, June 11, 2008
Scary!
I've been so stressed out these past few days. So much of my days have been spent thinking, and thinking, and thinking. An after-effect of the last consultation I had at the San Lazaro H4 Pavilion. And it's not even about the result of the CD4 count itself.
I still can't wrap my head around having to admitting to someone in the family that I'm HIV positive. It's just been barely two months. I'm still not even completely back on my feet from the news that I have HIV. And now this?!
I remember Dr. Malou of the Social Hygiene Clinic specifically say I should stay away from stress and depression because it in turn stresses and depresses my immune system. Something not good for someone with HIV. So why are the doctors at the H4 practically forcing me to tell someone in the family?
I honestly got the impression that they were indirectly saying something to the tune of If you don't tell, we won't start you on the medication. I mean if this were really a life and death situation, regardless of who knows or does not, they should give me the medicines I need, right?
I'm expecting everyone will find out eventually, but I'd appreciate being told that I could take my sweet time. I need to be reassured that it is not a requisite to being treated. I believe it is my health that is important, and that does not directly revolve around who I am able to reveal to.
It's just really really not that easy. It's easier said than done. Dealing with HIV, I can be pretty brave. But when it has to combine with interacting with other people, I'm chicken shit. I realize that the less I know a person, a stranger to the extreme, the easier it is for me to tell about my condition. Adversely, the more I know someone, the harder it is to tell.
I've been trying to analyze why this is the case with me, and I guess the difficulty to reveal is proportional to what reputation I've built with the person. I'm not saying I have some flawless reputation which I need to protect. I've always been flawed to begin with. But telling someone I've shared years with would retrogress to the very start of the acquaintance, I imagine. It would snowball into other issues and other skeletons in my closet, like how I got it, what I've been doing these past years, when I got it, how gay I am, how promiscuous I am, how I could have hidden my alternative life, and so on. Too many questions I might not have enough time to backtrack and answer, assuming I have answers at all. Multiply that with the number of people I have to come out to, and that just scares me. I just hope it doesn't scare me to death. That'll just put me out of my misery, huh?
Friday, June 06, 2008
Ear Drummed
Yesterday was a lot to think about.
But come to think of it, this past Thursday at H4 was equally a workout for my brain, with all the thinking and paranoia, as it was for my ears, with all the chattering and cackling I witnessed there.
Just waiting by the door as soon as I got there, an old lady walked from the ward and sat down across from me, and started chatting with me. She was the mom of one of the patients confined there. I felt she needed someone to pour out to, so I even stood up to sit beside her. She just went on about her son's condition, that he was gay (I don't know if she realized I was gay too), that the virus had affected his eyes, and about how her other children had abandoned their brother. A bit depressing to hear their story. But I assured her that she was a hero for the good job she was doing.
Another woman who passed us, the wife of another patient, was rambling about tests and blood donations needed by her husband.
Soon, with more than ten of us sitting out there, I was hearing about everything from the need for drinking water in the ward, ARVs they were taking, donations for school supplies for this coming school opening, to CD4 counts, Pinoy Plus meetings, and whatever else.
One of the guys was confined for a "re-trial", since the first ARV he was given caused him to get rashes and fevers. So this is what I'll have to deal with when I get to that stage, I remember myself thinking.
One other girl says she wasn't on ARV's, jokingly pointing out that her CD4 count should've shot up with her weight.
I even learned a new term. Everyone there kept mentioning the word pusit, which is actually tagalog for squid. I was tempted to ask What's with the squid?, but soon realized they weren't talking about squid. Apparently they use the term Pusit as a nickname for us Pusit-ives or Positives. I had to laugh when I realized that.
Several noticed the newly painted neighboring ward, and mentioned that we pusits should take over the building because it was nicer. A good idea, if only it weren't the Tuberculosis ward. Remember, we don't mix well with TB.
Each one had his or her own story to tell. So many different people, brought together by a supposedly not-so-good thing... it was amazing.
Too bad I was called away by the doctor, and didn't feel like sitting back down after the talk with the doc. But irregardless, still amazing.
