Since HIV was discovered 30 years ago this week, 30 million people have died from the disease, and it continues to spread at the rate of 7,000 people per day globally, the UN says.
There's not much good news when it comes to this devastating virus. But that is perhaps why the story of the man scientists call the "Berlin patient" is so remarkable and has generated so much excitement among the HIV advocacy community.
Timothy Ray Brown suffered from both leukemia and HIV when he received a bone marrow stem cell transplant in Berlin, Germany in 2007. The transplant came from a man who was immune to HIV, which scientists say about 1 percent of Caucasians are. (According to San Francisco's CBS affiliate, the trait may be passed down from ancestors who became immune to the plague centuries ago. This Wired story says it was more likely passed down from people who became immune to a smallpox-like disease.)
What happened next has stunned the dozens of scientists who are closely monitoring Brown: His HIV went away.
"He has no replicating virus and he isn't taking any medication. And he will now probably never have any problems with HIV," his doctor Gero Huetter told Reuters. Brown now lives in the Bay Area, and suffers from some mild neurological difficulties after the operation. "It makes me very happy," he says of the incredible cure.
The development of anti-retroviral drugs in the 1990s was the first sign of hope in the epidemic, transforming the disease from a sudden killer to a more manageable illness that could be lived with for decades. But still, the miraculous cocktail of drugs is expensive, costing $13 billion a year in developing countries alone, according to Reuters. That figure is expected to triple in 20 years--raising the worry that more sick people will not be able to afford treatment.
Although Brown's story is remarkable, scientists were quick to point out that bone marrow transplants can be fatal, and there's no way Brown's treatment could be applied to the 33.3 million people around the world living with HIV. The discovery does encourage "cure research," according to Dr. Jay Levy, who co-discovered HIV thirty years ago, something that many people did not even think was possible years ago.
You can watch Brown talk about his cure in this CBS video report.
Source:
Yahoo!
Monday, June 06, 2011
"Functionally Cured" of HIV
Sunday, January 16, 2011
Meds, Grants & Insurance
So as I mentioned in the story of my last trip to RITM, aside from getting my ARV refill, I ended up accomplishing something else, which was to submit partially to the RITM personnel the required documents regarding my PhilHealth. PhilHealth is the Philippine government’s health insurance system. Why is it just now that I’ve needed to submit stuff regarding my health insurance information to my HIV treatment hub?
Okay, here’s the deal. The Philippines’ ARV supply is currently supported by Global Fund grants, Global Fund being an international funding agency that somewhat focuses on HIV and AIDS, Tuberculosis and Malaria. And the Philippines is and has been a beneficiary for the past few years for HIV and AIDS, and Tuberculosis.
Naturally, that’s how funding works, right? You take out a grant for a project, towards certain goals for a certain time period. As that period draws to a close, the beneficiary is expected to furnish the benefactor the proper documentation to show where the funds went and how the funds were used. Causes or projects that are able to prove themselves trustworthy of funds can then usually easily apply for a new round of grants.
As such, the Philippines has been a beneficiary of the Global Fund for some time now. It is shouldering the cost of ARVs and some aspects of care and treatment such as medical consultations and laboratory tests. But at this point, a wave of anxiety and an unsure future is spreading through the whole positive community as it is being revealed that funding will cease by 2012.
Gasp! How cruel, how cruel! But is it really merely cruelty at all?
The first problem is that, from way back to my 2009 Funder Blunder entry, one of the non-government organizations, the Tropical Disease Foundation or TDF, that had served as a primary recipient for Global Fund grants, has failed to properly account for I-don’t-know-how-many millions of US dollars in grants, which the Global Fund itself has evaluated as “unauthorized expenditures“.
As a result of that, the Global Fund suspended for some time further funding of new beneficiaries, or new pusits. It was actually a relief that, later on, the funding was reinstated to the Philippines, with the Department of Health or DOH taking over the role that TDF was playing. So we all breathed sighs of relief. I’m quite uncertain though if TDF was able to fix the controversy it got into. Millions of dollars? I doubt.
The second problem is that the grant that is being enacted today, specifically for the care and treatment of HIV and AIDS, was really only meant to last until the year 2012. Meaning, 2012 marked the end of the period covered by the grant, and a new round of grants would need to be applied for beyond 2012. Simple, supposedly. But apparently, the country’s application for a new grant beyond 2012 didn’t make the deadline. Seriously? We missed a deadline?!
So who was supposed to do that on behalf of the country? The Philippine National AIDS Council, or PNAC. I’ve seen certain persons from the HIV organizations in online discussions blaming PNAC. HIV positives blaming PNAC for the oversight may be expected, of course, we are the ones who are directly affected, right?
But I must amusingly point out that these very HIV organizations are supposed to be members of, and be representing the positive community in PNAC, alongside government agencies like the DOH, DOLE, DOJ, and DSWD, and other non-government organizations. So wouldn’t their finger-pointing towards PNAC just ricochet back to their own organizations? Hmmm.
It’s just funny that, back in the day when we, the first positive bloggers, were making our voices heard, it was people from these very groups that were trying to take us down. And even more funny was that even as we were just putting together Positivism, they had tried to defame us, probably because they saw us as rivals for funding.
And now, we have them there on online discussions trying to rally us, the positive troops, around the issue, and even going as far as criticizing as being negligent of duty, anyone who is any ounce short of participating. Where the hell is all this negativity coming from? Heaven knows. Perhaps if certain people realized that snuffing positive voices and killing new advocacy groups was not part of their duty, then they could have fulfilled their responsibility to be representatives of the positive community.
Anyway, back to the problem of grants. So as a backup plan for persons living with HIV, should the time come that grants from Global Fund cease, Philhealth may shoulder the medical tests and services needed, and subsidize the cost of ARVs. So I had to leave photocopies of my Philhealth ID and my ARV regimen booklet, submit a copy of my Philhealth Member Data Record or MDR, as well as accomplished Philhealth Claim Forms 1 & 2. Just a few more things I need from my employer.
Since I’m currently employed, membership in PhilHealth is mandatory, so I get part of the premiums deducted from my salary automatically every month, while my employer is obliged to pay for another part. For those unemployed or who have never signed up for PhilHealth, there is an option of voluntary membership, which I think costs PhP200.00 or so a month.
So there. If at least, the Philippines is on the road to becoming less reliant on external funding to fulfill everyone’s, us HIV-positives in this case, basic right to healthcare.
Considering that voices from the grapevine say ARVs may still cost us around PhP3,000 a month even with PhilHealth subsidy, I think the ones who will be most affected by any interruption of Global Fund grants would be those who aren’t working. But then, having HIV is NOT an excuse to stop working, right? Not unless you’re paralyzed from the neck down or in a coma, which is hardly the case.
Some may think it’s easy for me to say that, since I’m currently employed and working right now. But then it is the truth. Having HIV is NOT an excuse to stop being productive. I’m not in a particularly secure situation myself right now... I’ll tell you about it later... but I’d still vouch for it.
But anyway, I’m not panicking about the funding issue. Stressing out about it this early just may affect my health, won’t it? And worrying about the future just ruins what you have today. We still have hope. No reason to stop hoping. Things will happen if they’re meant to happen. Que sera sera. For now, I still have the rest of my life to deal with. To infinity and beyond.
Saturday, January 01, 2011
Holiday Count Down
The eve of Christmas, mass and dinner with my mom’s side of the family. And on Christmas itself, home recovering from the holiday stress. And then back to work for the few days before the turn of the year. That’s how it’s been in previous years. But this year was quite different. Good or bad? Let’s see.
The eve of Christmas was still marked off for the family. But more than my being stranded between the generations, this year I’d be the star. Oh wait, more like I’d have the star. The Li’l Bastard was to make his first appearance as the family’s new bunso at his first Christmas. He was dressed in a little grey shirt with blue piping that matched my own outfit. New places and new faces, kept him quite overwhelmed.
I successfully weaseled out of mass since pets aren’t allowed in the chapel. So we walked around the village to while away the time. Then it was time for a change of costume, as Santa Paws of course! Yes, the Li’l Bastard loves to dress up. And naturally, he became center of attention, the fashionable little whiny pup that always had his left paw up like a limp-wristed twink. Hahaha. Oh well. Mana mana.
By the end of the evening, I was just glad Christmas only happens once a year. Oi, pardon me for thinking that way as early as Christmas Eve.
Christmas Day, I had planned to stay home. But no. I had find internet access because I had work to do. Work?! I knowwwww! Work! So I spent the morning in a coffee shop at the mall, stalling enough through my iced mocha to get everything done. And then I headed back in time for lunch and to spend some home time.
The 26th and 27th continued in the same fashion. No plans, just rest. I did go out for a while to bump into a former college professor of mine to catch up on stuff over a couple of beers, but that was it. Recharge. Recharge.
I had the 28th planned out. I badly needed to go to RITM for med refill… as in two weeks ago. I had already borrowed a month’s supply of ARVs from W, with whom I share the same combination. So like a workday, I left the house at 7:00 am, but this time braved the MRT. Thankfully, it wasn’t as jam-packed as the usual workday rush hour. I actually got to RITM in under an hour, which I found amazing.
There, I texted an online friend. We were eyeballing. Meeting was easy since there were just two of us there at the clinic that early. We talked a bit. He told me about deciding to get tested after noticing he was getting sick a lot, and because he had come from a relationship with a particularly promiscuous guy. I found that amazing that he instantly thought HIV may be the culprit, not your normal reaction. He was barely a month on ARVs, and was there to complete some other baseline tests.
Ate came in and arranged for my refill. Leafing through my records, she pointed out some results. My viral load. The viral load is a quantitative measure of the HIV virus in the blood. The lower that is, the better. I’d never seen my results before. Apparently, my viral load, which is measured annually, has been UNDETECTABLE both in 2009 and 2010. I know I should’ve been jumping for joy, but I was probably in disbelief. Really?! Then my lifestyle, the medicines, and the yoga are working that well. Wow, well I’ll take that.
I left my new friend at the clinic while I went to the pharmacy. Mission accomplished. Ate also sent me to the back office, to submit some stuff for Philhealth. Oi, Philhealth is a long story...
So anyway, that done, I tagged along with my new friend for his errands. Back at the clinic, we caught the other nurse, Ate S. While figuring out my friend’s ARVs, she mentioned they’d started ARVs at the same time. Say what?! Sa kanya ako nahawa eh! I was aghast. Did they have unprotected sex? Did we have a pusit nurse all along?
Well, not quite. Apparently, Ate S suffered from an accidental needle prick injury while administering a PPD test to my friend on a previous visit. So however small the risk, she needed to have a prophylaxis, which meant a month of the very ARVs we‘re taking, just as a precaution. Talk about immersing yourself in the patient’s world, huh? A firsthand experience of ARVs. Not everyone can claim that. But she was in good spirits and was already joking about it.
Oh, and Ate S’ short stint with the RITM is about to end. She said she’d no longer be with us in 2011. Nope, nothing to do with the accident. She’s going to go to med school. I was saddened by the news a bit, she grew into such a competent nurse for us, but I know it’s for the best. You’ll never know, she might come back as our Doc S someday. Hmmm.
From there, we headed off and had lunch at the mall. An early lunch, he was, after all, coming from fasting for all his blood tests. From there, I headed back home to prepare to spend the afternoon with the hubby. Mmm.
Wednesday, the 29th, was Yoga for Life day as usual. But just after lunch, I was off on a mission in Manila. BFF and I met up and took the LRT to Tayuman. We walked a couple of blocks, and finally found our destination. YAFA. Youth AIDS Filipinas Alliance, an HIV advocacy group.
We found the address, but weren’t sure, since it didn’t look right. We knocked. The door was unlocked and opened up to a stairway. We walked up. Tao po? Someone walked out in just his underwear. Oh, welcoming committee? Hehe. Well, we seemed to catch them at the least perfect time. Let’s put things in context, they had scheduled a general cleaning that day, and there was a power interruption, thus, the outfit, or lack thereof.
As soon as they gathered their composure, we got the honor of sitting down with the famous DyingYoung. He told us all about YAFA, and BFF was able to ask his questions about one of their projects. It was actually very interesting, and reinforced the respect I have for YAFA. For such a young group, they’ve really been making waves.
From there, I got BFF to accompany me to the Manila Social Hygiene Clinic. It’s maybe been more than a year since I was last there. Nurse Malou Tan is no longer connected to the SHC. But I got to see Dra. Diana Mendoza, rebond and all. I don’t even think she remembered my name. I left some Positivism brochures with her and asked how the SHC was doing.
They still have free HIV rapid testing there at the Manila SHC, so she asked that we refer people to them for screening. They’re open Mondays to Thursdays, 8:00 am to 3:00 pm, and Friday mornings till noon.
And from there, we took the LRT-MRT route to Ortigas. After a quick snack in Shangrila, we headed to yoga early. Yoga was special today. A hundred and eight sun salutations. Yes, 108 forward bends, halfway lifts, pushups down, and upward- & downward-facing dogs. Was I confident I could do it? Not particularly. But I was going to try. And try I did.
After it all, up to today, two days after, biceps and triceps, quads and calves, back and chest, basically from the top of my neck to the soles of my feet, I’m sore. Sore in a good way. And the fulfillment of getting through the 108 sun salutations is phenomenal. Roarrrrr!
So that was my itinerary for the week leading up to the turn of the year. Sounds like a lot for just a week, especially for me. If that’s going to set the stage for 2011, then it’s going to be a busy one. Bring it on. Bring it on. With that, I hope everyone has all their fingers intact, and had a very Happy New Year. It's 1-1-11. Nagpaputok ka ba?
Sunday, September 12, 2010
Bitch Finds a Bastard
You already know that I’m the self-named, self-confessed, self-admitted B.I.T.C.H. I might just be the only person who has no problem being called a bitch. I’m the personification of the old Alma Moreno joke, who when called out, “Hey, BITCH!”, would reply with much annoyance, “Don’t you dare call me ‘Hey’!” So, as the Bitch, it is appropriate that I find my bastard. And I found my bastard.
He’s young. He’s short. He’s dark. He’s hairy. He loves to nibble. He’s jumpy and very excitable. He loves me unconditionally. He hates taking baths. He’s one hot dawg. Oh... what? I really was talking about a dog... as in he walks on all fours.
A colleague at work had puppies that she needed to give away... to anyone who was willing to give them a good home. Four puppies each needed a home. Easy a decision as it should’ve been, I had to think about it seriously.
I’ve always been a pet lover. I’ve had fish, turtles, fortune lobsters, cats, dogs and even a monkey. And my last pets, and I could say my favorite species, were rabbits. But it’s been 2 years since my last rabbit died. Almost perfectly timed with finding out I was HIV positive. I guess it gave me time to take care of myself first.
But it was time. I took a chance. Let’s give him a codename. Let’s call him mah little Bastard. Because he is... he is Bitch’s little Bastard. Just in case he’s in any way covered by R.A. 8504, let’s keep his real identity for him to disclose for himself.
And August 21st, the little Bastard came into my life. He was born June 10th, making him around two and a half months when I got him. He’s a mini-pinscher, with a little mix of shitzu. So in the question whether he’s a pure breed or not, he isn’t. But that don’t mean he ain’t the cutest.
He doesn’t exactly look like a mini-pinscher or a shitzu. People have said he looks like a Yorkshire terrier. He actually reminds me of Tintin’s dog, Snowy, just tinier and in a different color. He’s black, with brown bits on his legs, his snout and his eyebrows. He’s not exactly classy looking. I would actually use the word “scrappy” to describe him. He really looks scrappy. But just right. I’m not classy myself. I’m scrappy, too.
So there. Officially, this is my first dog. My own dog. A dog who I’ll be bringing up, my own style.
So for the first time ever in my pet history, this dog stays inside the house and sleeps in my room. He ain’t gonna be eating bones and just leftovers either. But most importantly, health-wise, karir kung karir.
Well, it was partly a condition laid upon me by my colleague who gave me the little Bastard. But more importantly, I cannot overlook the fact that I am now immuno-compromised. So the little Bastard’s health can and will directly affect my own.
So, two weeks ago, I brought the little Bastard to the veterinarian, luckily just a couple of blocks from where I live. It wasn’t his first trip to the vet, as he’d began his shots even before he was given to me, but it was mine. He had a little booklet that was a record of the vaccines he’s gotten... funnily similar to the booklet I have for my ARVs.
The poor little thing got the second dose of his vaccines, which the doctor said was a 5-in-1 thing, all with a little whimper. It was a combination of vaccines for DHLP - short for Distemper, Hepatitis, Leptospirosis, and Parvovirus - plus Corona Virus, if I‘m not mistaken.
Interesting. I never knew dogs could get hepatitis. I’m sure it’s different from the hepatitis I have, but I could’ve truly said that I can sort of relate.
By next week, he’ll get his next shots, which the vet says will be a 6- or 7-in-1. I’m not exactly sure what six or seven those are. Also soon, he’ll get a follow-up for his deworming, and start on his rabies shots. I’ll probably have to get a rabies vaccine as well, just to make sure. I’ll ask RITM about it.
I really wasn’t sure how my mom would take the little Bastard. But thankfully, she’s fallen in love with him. She’s been able to whip out her grandmothering skills, probably seeing him as the first ever grandchild she’s been longing for. She loves feeding him, keeps him company during the day while I’m at work, telling me all about his antics while they’re home alone, and even going online to research on dog care. And mind you, my mom isn’t exactly all that techie, so that’s a real effort for her.
It’s really not hard to fall in love with the little Bastard. He lives by little bundles of energy, and is a sleepy, lazy pup in between... quite like myself. He’s also extremely perky and pesky, in an adorable way. And he’s extremely smart. It took just over a week to potty-train him, although he does still have the occasional accidents every once in a while. He also knows this early how to “sit” and “come”, and he has this funny way of putting his toys away by his little bed, which my mom says takes after my obsessive-compulsive side. Hehe.
I guess the worst part of it is that the little Bastard is really taking up my time. I can’t just stay out all the time knowing that he’s home waiting for me. And my mom is taking advantage of that fact as well, using him as a way of convincing me to come home early every time I have plans. Argh. But he’s not exactly cramping my style completely. I am still able to stay out late or go out on weekends, either for yoga or the occasional dates.
He’s not keeping me up late either. Mostly, he’s sleeping when I am. Or if he is awake, I don’t know what else he’s doing... he’s really quiet and doesn’t disturb my sleep. Though he is becoming my third alarm clock, as he now knows the morning routine. My cellphone rings, my wristwatch rings shortly after, and soon he starts licking whatever body part I have hanging off the bed, trying to wake me up to let him out of the room. Even on holidays. Hahaha.
So there, this is my little Bastard. Just over four months old, and barely a month under my care, the little Bastard right now has earned his special place in my heart. One other reason to try to stay healthy and live longer. Yes, this Bitch has found his Bastard.
Sunday, October 25, 2009
Funder Blunder
The Philippines and HIV have made headlines again. International headlines at that. It’s just a shame that it’s not something good. And nope, it wasn’t even anything about the number of deaths, new infections or prevalence or anything like that. It was something even more controversial. I doubt if you could even fathom it.
But then again, in the Philippines, anything can happen.
Global Fund grants have been directed towards efforts for three major areas of concern: Malaria, Tuberculosis, and HIV. The Global Fund has given over US$200 million in grants to the Philippines, a part of which is instrumental in affording free ARVs to 636 of us Filipinos who live with HIV, as well as the provision of other services, programs and efforts in line with HIV. And now, this funding has been suspended. Yes, suspended. What happened?
The Global Fund has three Principal Recipients of its grants for HIV to the Philippines: Pilipinas Shell Foundation, the Department of Health or DOH, and the Tropical Disease Foundation or TDF. And one of them has racked up over US$195 million in grants, of which US$1,000,000 remains unaccounted for. You’d expect it to be the DOH, because of the reputation of the Philippine government and its officials... but surprisingly, it’s not the DOH.
I first encountered the TDF during my debut into the HIV world, back when I was still frantically searching online. I was searching for information, and individuals and groups that could possibly help me out. I chanced onto their website, and remember sending an e-mail to someone from their HIV program, whose e-mail address I found on the site. I was simply asking what kind of assistance they provided, and if I could be eligible for any of it considering I was just diagnosed with HIV. Sadly, I never received any reply from them.
As the Principal Recipients of the Global Fund, I’m guessing that from the TDF and the other Principal Recipients, the money gets distributed to the grassroots institutions like the RITM and San Lazaro, as well as organizations like our faaaaavorite NGOs. But then of course, as the top-level beneficiaries to the grants, it is the Principal Recipients who are held accountable for whatever money they received... an accountability and a responsibility that the TDF has allegedly forgotten.
According to reports, the TDF has failed to properly account for US$1,000,000 of the grants that it has received from Global Fund. The Global Fund has coined the amount as “unauthorized expenditures”. As a result, the Global Fund has opted to suspend further funding until the whole amount has been accounted for or reimbursed. US$1,000,000?! Almost PhP50,000,000?! Good luck with that.
Indeed, good luck is what is needed, especially for us who should be benefitting directly from the grant. Because of the controversy that the TDF has fallen into, Global Fund is said to have suspended enrollment of new beneficiaries into the program. New beneficiaries, as in new pusits. Which I think means no one will be starting their HIV journeys under the support of Global Fund in the meanwhile. Fortunately, the way I understand it, for us who are already under the programme, the support will continue. Whew.
I’m not going to go on ranting to whomever and at whatever at this point. I certainly do not know all the details. Of course, I do still hope against the possibility of the money making its way towards the personal gain of those who should not have been benefitting from it. We all know how money can make the world go ‘round... and how it can harden hearts and cloud minds. Hopefully, it’s just some administrative or accounting glitch that we’re dealing with here. Only heaven knows what really happened to that money.
One solution that is being looked into, I believe, is to replace the TDF as Principal Recipient of their part of the grant. Meetings for this have been scheduled for October 19th. It is said that the DOH is being eyed to fill the void. And if I understand it right, once the new Principal Recipient of TDF’s part of the grant has been established, the support will also be reinstated along with it. My fingers are crossed that it will really be that easy.
I’m running on my last month’s supply of ARVs. I’m scheduled to get a refill sometime November. Should I be worried that the next time I go to get a refill, I might not get any? Not yet. Not at this point, at least. Until someone comes up to me and says, “I’m sorry B.I.T.C.H., we’re no longer going to be able to provide free ARVs from now on,” I refuse to be bothered. Worrying just won’t help.
I see “suspended” as postponed, deferred, or delayed. Not stopped. Meaning it can go back to how it was before. I’m really trying to stay positive in all senses of the word. I’m just thankful that the Global Fund has not decided to completely cut its ties with the country and its beneficiaries here altogether... myself included. I know that as someone who may be directly affected by this problem, it should be easy for me to crucify anyone who may be the cause of this controversy. But you know what, if there is indeed anyone letting greed run his show, then I leave him to his karma.
Read more on this story from the Global Fund and the Philippine Star, and the response of the Tropical Disease Foundation to the allegations.
Thursday, July 23, 2009
D'oh!
You’d think taking ARVs once a day at 9:30 in the evening would be simple enough, right? Of course!
But prepare to be amazed.
Leave it to little ol' me to really screw things up... big time.
It was a regular Thursday morning. I was up and about by 6:00 am as usual, awoken by my wretchedly reliable body clock. I stepped out of my room and went to the kitchen sink to wash my face. I headed to the dining table and took breakfast while watching Umagang Kay Ganda. Rice as usual. Today, it was chorizo and fried egg. Yum. Nope, no coffee, just water
When I was done, I took my plate to the kitchen sink and let it sit in some water so it’d be easier to wash later on. Meanwhile, I went to my room and popped a handful of something in my mouth, and finished it off at the fridge with a tall glass of water. Ahhhhh. I then headed back to my room to get my towel, ready for my morning shower. And then I was stopped dead in my tracks.
Nope, not by anyone or anything. Just a freaky realization echoing in my head. What the hell did I just do? Did I just drink my ARVs? Did I just drink my ARVs?! Oh... my... gosh!!!
I’m not really sure why it took me that long to realize it. I’m not even sure why I had to realize it at all. But instead of my daily dose of vitamins C & E, I actually grabbed one of my little pill cases and downed a day’s worth of ARVs 15 hours before I was supposed to! Oh... my... gosh!!!
I don’t think I was panicking. I was actually shaking my head and laughing at how stupid I was to make that mistake, repeating to myself, Oh my gosh, Oh my gosh, Oh my gosh!
I was wondering if I should stick a finger down the back of my throat and force it out, but I just couldn’t. It would be such a waste. And not to mention gross. This is it. I had officially overdosed.
Considering I usually feel lightheaded between one to two hours after drinking my ARVs, I was doomed. I now had one to two hours to go through the rest of my morning routine and make it to work unscathed. Otherwise, I’d be walking around like I’d been left with a hangover from the previous night. Great. That’s a really great impression to leave with my old office in Ortigas, where I had planned on reporting for the day. Trust me, I was worried.
And I don’t know for sure, but I think all that paranoia just brought the side effects on even faster. I was on the bus with my mind spaced out, my face flush, my eyes getting heavy, and my head in the clouds. Fortunately, I managed to get to Ortigas safe and sound... and still wide awake.
So what was I supposed to do now? Should I still drink another dose later tonight? Or should I skip it and just wait for my next one tomorrow night? Argh, my doctor will kill me if she reads this. I can only hope she’s laughing with me... Imagine me with a guilty smile on my face. Ooopsy... I just never meant for it to happen.
As much as I’d like to deny that it happened, I won’t. As much as I’d like to convince you that I did it as an experiment just so I could share the experience with you... I can’t. It was just another of my D’oh! moments. This was just a hugely embarrassing but funny mistake that I hope everyone can learn from, including me. Note to self: Try not to do this again. Again I’m reminded... I’m just human. D’oh!
Saturday, April 25, 2009
Saké? Hai! Arigato!
I had TGIF on my mind from the time I got out of bed yesterday. Another end to a work week, and another weekend to look forward to. A routine day at work ensued. At the end of it all, I punched out at exactly 5:30 pm and left the office... but I wasn’t heading home.
The day just wasn’t over. Not just yet.
The Positivism.ph team had a dinner meeting scheduled last night in Makati. The agenda of the meeting? Well, the second issue of Positivism is currently in production, so we needed to updates as to how it was going and what else was missing or needed. It’s been a while since the last issue, released last December, mostly because we needed to act upon the feedback we got regarding our maiden issue.
So leaving work on the dot, I had two hours to spare before the meeting. I opted to take a bus to Makati, purposely meaning to get stuck in some traffic to eat up some of that time. I find bus rides much more relaxing, too, rather than having to walk all the way to and up the MRT stations, and squeeze into jam-packed commuter trains. So a long bus ride and a short jeepney ride later, I got there... still with thirty minutes to spare. Good enough. I pride myself with being almost never late for meetings.
I headed to the resto immediately, aiming to relax a bit and warm up to the unfamiliar place while waiting. I found the quaint restaurant, was greeted at the door in Japanese and led by the kimono-clad waitress to the reserved room. And in keeping with its authenticity, guests were to take off their shoes before entering the room, which was on a platform that opened up to a low seating table with leg-less chairs flanking it on both sides. Cute.
After about fifteen minutes, J, a fellow pozzie who wanted to meet the team behind Positivism before agreeing to be part of the coming issue, got there. And shortly after that, our Hotbox bosing and the rest of the gang arrived as well.
With some cheers of sak̩ and lots of chika-chika all around, dinner ensued, with the raw stuff kept away from us who were immuno-compromised. Hehe. Yes, we practice what we preach. We were a noisy bunch through dinner Рwell, they were Рbut paled in comparison to the Japanese group in the adjacent room. Or maybe we were just hungrier.
After dinner, business replaced the food on the table. I don’t know how much I can give away without preempting the next issue, but what the hey... A preview of the HIV Basics sections came first, which was revamped to cater to those who had a difficult time with the previous issue’s magazine platform. I was literally speechless. It looked great. I was guilty, too, as our Hotbox bosing spotted a single missing word which made a world of difference.
Fine, I’ll admit it. I was tasked to act as editor for this coming issue. I write, yes, but I had never edited before. And I never expected that the hardest part of the job would be editing the parts I wrote myself. There’s just something about having extra sets of eyes comb through a piece of written work to spot mistakes and correct them. Sigh. I just must do better next time.
Next came the Features sections, which will remain in the magazine platform. The cover story? Wanggo Gallaga. Several new sections were born for this second issue: Affected Uninfected, stories of and by people surrounding those infected with HIV; Shout Outs, a venue for those living with HIV who want to come out to the world; and Say What?!, the poll now accompanied by a couple of blogs that readers can interact with... ahem-ahem. Hai!
This second issue will also see the initial offerings of Q for 2, where Dra. Ditangco and Shola Luna answer questions sent in by readers of the previous issue, Readers' Letters, which features e-mail and feedback we got after the launch of our maiden issue, and the Archives, where you still can visit the first issue of Positivism, themed CHANGE and featuring Shola Luna on the cover.
Old staples will still be there, such as It’s A Positive World, composed of news and stories on HIV in the world context, and Good Vibes, which is a collage of videos, articles, games and music, all related to the coming issue’s theme, which is RISK.
It was amazing how much had been done since our deadline for written content back in March. I can safely say that I am equally excited for this coming issue, as I was for the first. And damn proud, too. Ngarrr. The launch of Positivism’s second issue is slated for the second week of May, so watch out for it.
Considering it was past my bedtime and I was waiting for my ARVs to kick in, it was evident that I was left with still a bit of residual excitement for the night. Not as hyper as J, though, who was still full of life as he gave some of us a ride back to Quezon City. I made it home before midnight, by which time, of course, I was off to ARV high.
So allow me to plug shamelessly: Visit www.POSITIVISM.ph, the first e-magazine on HIV and AIDS for Filipinos worldwide. And watch out for our second issue, come May. Arigato!
Monday, April 13, 2009
Think Positive!
The day had come. I was in front of the telly as early as 9:00 pm, switching channels to and from Miss Congeniality 2, Extreme Makeover Home Edition, Top Design, and GMA 7, of course. I’m sorry, I just could not stand seeing Yaya Patani on Ful Haus, which finally ended around 11:00 pm. This is it. This is really is it.
At around 11:05, as my ARVs kicked in, the show started with a definition of HIV, moving into vignettes of Vicky Morales showing common myths regarding transmission. Wanggo Gallaga’s story then followed – his risks, acceptance, and disclosure. His dad, Peque Gallaga then frowned on how people connect conditions like HIV to being punishments from God. I had to nod my head to that. I was amazed to realize that all this was just the introduction to the program, as the title sequence swept in: Think Positive.
Earlier meant to focus on 18 to 25 year olds, I noticed they shifted the at-risk group to span up to the age of 29, and realized I did barely fit into this category, having been diagnosed just weeks before my 30th birthday. Should I feel proud? Not exactly. Hehe.
Following the first gap, they went into HIV testing. Vince, a seafarer, was to get a mandatory HIV test for employment – lo and behold – at the Social Hygiene Clinic in Manila! My very own! Kiko, a freelance writer, was also to get tested because he had been engaging in risky behavior. They showed a clip of the pre-test counseling, followed by a gut-wrenching shot of blood extraction. The thing that makes me go eeew.
As Vince and Kiko began the agonizing wait for their test results, the story transitioned to Echo, a counselor, who then discloses his HIV-positive status. He told his story towards the realization that life still has meaning, in spite of HIV.
Going back, we followed Vince and Kiko’s blood samples to the STD/AIDS Cooperative Central Laboratory, or SACCL, where they gave us an idea of how the tests are done. Vicky Morales then stated how opportunistic infections, and not AIDS, are the killers. Perfecto. A Dr. Avelino of the Philippine National AIDS Council, or PNAC, then discussed the modes of transmission of the virus, and how it may take years after infection for symptoms to arise.
Finally, Vince’s test results were handed to him by my own Dr. Diana Mendoza of the SHC. I was stunned when, as the doctor told him he’s negative, he actually needed to cry on her shoulder. Considering he wasn’t blurred out, I just thought to myself, hmm, this is disclosure of a different kind. Hehe. Okay I’m an ass, sorry. Kiko was negative as well, but still within the window period. He did however speak about realizing the need to protect himself from then on. Truly, positive or negative, HIV tests are life changing.
DOH statistics were next, where, as of 2008 records, there are 3,589 Filipinos with HIV. Estimated true value? Almost double that. A total of 528 were diagnosed in 2008 alone, of which I am just one. Highest prevalence was among age groups 25-29 and 30-34, and 70% were male. One shocking number was that 42% of those diagnosed in December of 2008 were aged from 15 to 24 years, and mostly MSM, or men who have sex with men. Fifteen years old?! Geez.
Several vignettes of Filipinos living with HIV followed. Greg was diagnosed in Dubai prior to the start of his employment. Though he ended with a life-must-go-on attitude, he ushered in the internet as a potential risk factor for the spread of the virus, via personals sites, sex eyeballs and the like. Me? Guilty.
Segueing from the HIV and AIDS situation around the world, a couple of Filipinos living with HIV in the United States were shown. With Charles’ story, came the fact that 31% of HIV-infections in San Francisco are Filipino-Americans, attributing to the apparent ease with which Filipinos blend with western cultures. Henry came next, telling of his current partner of 10 years who is HIV-negative. Indeed, there is hope! Hehe.
Before taking the story back to local soils, I need to point out how doctors in the US have a “cleaning” method for HIV-positive sperm, in order to keep an HIV-negative woman safe when attempting pregnancy. Very interesting.
Back to ‘Pinas, Elvira was next, who I recognized to be my S. I encountered her before at the RITM, remember? She was the female face in this HIV documentary, as she told of the time when medical personnel in Bicol refused to treat her ailing child because they were both HIV-positive, even threatening to have them thrown in jail. Sadly, this caused the eventual demise of her child. But bouncing back, she is proud to be the not-so-stereotypical HIV-positive person, and is now a project coordinator with one of the NGOs.
A short description of Republic Act 8504, the Philippine AIDS Prevention and Control Act of 1998, made way for John, who worked for a call center, and was diagnosed in February of 2008 during a pre-employment medical exam for a job opportunity abroad. He was monogamous with his partner at the time – ergo, not my promiscuous type – but still was exposed to the virus.
And there it was. A guy sitting in front of a computer, surfing and typing. Ngarrr, okay, it was me. The B.I.T.C.H. was on TV. I think I spaced out recognizing myself on the screen. I was cold. I was feverish. I don’t know if it was because I was self-conscious, or it was just the meds. I don’t remember much, other than seeing how bad my posture was and hearing myself explain why I decided to start blogging and describing HIV as nandito na and napapag-usapan. You be the judge.
Positivism wasn’t part of the story, other than a few screen shots that I saw and some videos which were reminiscent of those we have on the e-mag. Darn. Maybe next time.
The plot thickened as they featured statement from the CBCP putting the kontra into contraception again, but thankfully ending with the proposed Reproductive Health Bill which is going through its legislative paces.
A little past midnight, the documentary ended with a reminder of the ABCDEs that can help keep one safe from the virus. Eeeehh memorize ko na yan! Hehe.
Was it just me, or did anyone notice how heavy a commercial load the show had for a late Sunday evening? Were companies actually willing to support this once taboo topic? That’s a good sign, right?
Anyways, other than the fact that it went way past my bedtime, and not because I was part of it, and not even because it seemed to give so much mileage to this blog, I gave the documentary four thumbs up. Yes, four thumbs, because I was cross-eyed with my drowsiness and medicinal high combined. Hehehe.
But seriously, although I would have really wanted it to really take the “positive” angle of HIV to its happiest maximum... and although I thought it was still too huge an issue to cramp into an hour... I thought it was PERFECTO!
Again, kudos to the people who worked on this. "World View Presents Think Positive!" was produced by GMA News and Public Affairs. Executive producer and writer, Jay Orense. Writer and researcher, Glenn Ala. Director and segment producer, Maey Bautista. Researcher, Marie Ann Saballegue. Uhm, is there any way we can get a copy of this? :-D
What did you think about it?
Wednesday, February 18, 2009
Befriending the Enemy
Recently, I was informed by Mr. Blackpool that someone from GMA wanted to get in touch with me. I swear, I cringed. Blackpool has become a friend, and he is completely aware that I’ve come to develop a history with that television network. But he assured me the person from GMA was a friend of his, and requested that I at least give it some consideration. It felt like I was gonna be sleeping with the enemy, argh. But, fine, I gave it some thought.
Initially, I was hesitant to give my mobile number to the guy, and didn’t even want to call him on his landline, from fear of being traced and stalked. So I asked that he tell me what he needed via e-mail. And he did. Simply enough, all he wanted was a meeting. But I think he drove his point when he said no commitment, no bullshitting. Fair enough. But I had my bitch ready.
So after a day’s worth of thinking, a quick chat via YM to warm things up between us, some attempts at flattery, and of course some badgering from Mr. BlackPool, I finally gave in. We were to meet that same evening. Discovering we lived nearby from each other, we agreed that a coffee shop at the local mall would be a convenient place.
I honestly was considering calling the meeting off at the last minute, only because I really wasn’t feeling well, hung over from the physically and emotionally draining weekend. But I just wanted to get it over with. I needed to know what it was all about.
Needless to say, it was another benefit-of-the-doubt thing, but I showed up nonetheless. After some small talk, he shifted from social to professional. He made clear that though they were from the same network, he could not officially comment on what happened to Baby Nathan because he was not witness to it. He assured me though that they were a completely different group from the Emergency thing, and just shared a bit of his personal and off-the-record insight on what he had heard about it. Fine. I was appeased.
He then went straight to the point. He was part of a team doing another documentary on HIV and AIDS. He wanted my input on how it could be treated, at the very least. I don’t know exactly what I can or can’t say about what we talked about, but let’s just say I used references to the previous documentaries done by Reporter’s Notebook and Emergency, both GMA shows as well, to point out what exactly was not properly done or shown. I was also able to share with him my thoughts and concerns on the treatment hubs and HIV advocacy groups, some of which he was able to visit already.
After a lot more talking, my drinking my ARVs in front of him signaled that the meeting begin wrapping up, before I started feeling the side effects. We finished the meeting and headed our separate ways, probably both left with much to think about. Personally, I think just having someone to pour out my thoughts to was therapeutic. I slept past my usual bedtime, and woke up an hour before I was actually supposed to, but I’m feeling much better than I have been for the past few days.
As much as he’d like to hear me say "I think he's really nice and really good looking, too", I’ve chosen to focus on the business side of things. So I’ve been giving it some thought, and I’ve come up with a wish list of points that I’d like the documentary to make. Here goes...
~ HIV is here. Now.
~ HIV has no mercy for age, gender, race or sexual preference.
~ HIV has no mercy for intelligence and social status, either.
~ HIV is not a homosexual disease.
~ HIV is not a disease of just the promiscuous.
~ Knowing one’s HIV status is important.
~ We must not fear getting tested.
~ Whether positive or negative, HIV tests are life-changing.
~ HIV can not be transmitted through casual contact.
~ Discriminate against ignorance, not HIV.
~ A risk is a risk, no matter how small. Just be ready to take responsibility.
~ It is everyone’s responsibility to keep him or herself safe.
~ HIV does not kill.
~ HIV is not a debilitating disease.
~ People living with HIV & AIDS can still be productive.
~ HIV is a big deal, but can be dealt with.
That’s just as far as I’ve been able to go. I might come up with more. Or you might have some ideas. Sound them out. That’s the least we can do to make sure this is done right this time.
Awareness, I believe, will be the key to stopping the spread of HIV. And whether I like it or not, the media will play a huge role in spreading information. And whether they like it or not, we, as viewers, have the power to steer the media onto the right path. Empower yourself. Now is as good a time as any.
Saturday, February 14, 2009
My Secret
Going for my CD4 count last week, I had previously heard cases of CD4s going up and down by over 150 points. With that in mind, the least that I was really wishing for was that it not go down and I be told that my ARVs weren’t working, and that they’d possibly have to be changed, which would mean another round of trials and adjustments.
Truth be told, upon receiving the slip of paper from Ate where she’d written our CD4 counts, I read it initially as 404. And with that, I was happy enough. But noticing a little loop on top of what I thought was a zero, Ate confirmed that indeed, it was an eight that she had written, making it a 484. That just left me even more amazed.
So with that accomplishment, I’ve been asked what my secret was. How did I do it? Geesh, honestly, I don’t know. Let me think.
When it came to food, I didn’t really make many changes. I’ve consciously been trying to eat more, increasing my rice intake from one a meal to 1½ or sometimes even 2 cups a meal. I’m still eating anything and everything there is. Rice, bread, pasta, pork, beef, chicken, fish... even fruits and vegetables.
I’ve always been a veggie eater, which I’ve heard is a good thing. My favorite? Gisadong ampalaya. Yum. I get that once a week from the little canteen near where I work. Luckily, ampalaya or bitter gourd was the particular vegetable that the resident counselor at the RITM says is good for people like us living with HIV. I don’t exactly know why that is. But I might be a testament to its efficacy.
Surprisingly, I’m choosier when it comes to fruits. First of all, I only like the fruits that I grew up knowing. I don’t enjoy “seedy” fruits either. And I hate the smell of oranges and the like. That leaves me with mango cheeks, canned pineapples, fruit cocktails, peach halves, seedless grapes, raisins and bananas.
I did try to get into a milk phase earlier into my ARVs. I started off with a glass of milk every night, but was overcome by my long-standing fear of milk causing me diarrhea, so I reduced my intake to just over the weekends, or with cereals for snacks. But I’ve just gotten too lazy. I’m now only able to take milk when I feel like it, when I remember it, and when I put my mind to it.
Food supplements are zero at the moment. I started off taking multivitamins, but ran out of them back in November. Anyone ever notice how expensive they are? So anyway, since that time, I haven’t gotten back to taking them. Despite that, I’m doing pretty good I think. I noticed I haven’t been catching coughs or colds as easily as before.
Alcohol intake is still the same as before, occasional. I did say I had my fair share of drinking during the holidays, but since that, almost nothing, which is normal for me. After the new year, the next taste of it I had was a single bottle of beer up in Tagaytay. That’s been the last, too.
I do believe that getting enough rest is a big factor. I’ve always been an eight-hour a day sleeper, and I make my zzz quota maybe 90% of the time. That’s just the way I was built, I’m practically useless past my bedtime. On weekends, I even sneak in afternoon naps when I can.
And then of course, there’s the compliance with medications. I’m still on Isoniazid, a tuberculosis prophylactic, which the Doctor put me on for nine months. It was fortunate, having been possibly exposed to tuberculosis when I found out that a couple of job applicants at work flunked their medical exams because of it.
As for the ARVs, I’m proud to say I have never missed a day of taking them. I’ll admit though that sometimes the timing becomes a problem, especially when I’m with people to whom I’d rather not explain what exactly all the tablets are for, or when I’m caught on the way home and would rather not risk drinking water from heaven-knows-where just to gulp them down. I think the most that I’ve missed my daily schedule by was maybe two to three hours. But shhhhh, don’t rat me out, okay?
Those factors might just be the tip of the iceberg. Of course, there are all the psychological, emotional, and maybe even sexual factors that might come into play. Heaven knows which ones I’m doing right, and which ones I’m not. In any case, I still believe thinking and living positively go a long, long way. My secret is out.
Tuesday, February 10, 2009
Lucky Me!
With the Chinese New Year ushering in the Year of the Ox, everyone’s been talking about luck. And from all the features I’ve watched, 2009 should actually be a lucky year for me, being born in the Year of the Horse. But I believe my good luck started last year, when I found out I was HIV-positive.
You know that I’ve always regarded myself as lucky despite the fact that I’m now HIV-positive. I’m lucky that it isn’t some other more severely debilitating disease that I have. I’m lucky that I found out relatively early on that I had it, and still wasn’t manifesting any symptoms. I’m lucky that I had a pretty decent CD4 count to begin with. I’m lucky that I’ve gotten through the challenges of starting on ARVs. I’m lucky that I’ve made the choices to get to where I am now. I’m lucky to have encountered the greatest people along my HIV journey.
I was lucky to have chosen to get tested at the Social Hygiene Clinic in Manila, the personnel of which have been so kind until now. I was lucky to have encountered U, who introduced and took me to the RITM more than 6 months ago. I was lucky to have come across E, who’s become my poz blogger buddy. I was lucky to have met RITM’s resident counselor, who, through some ridiculous circumstances, was instrumental in linking me to the Positivism team. I was lucky to be introduced to Baby Nathan, who’s brought more passion and inspiration to my positive life. And of course, I’ve been lucky to have all the rest of the angels along the way, who’ve been so extremely supportive and accepting.
Being HIV-positive has afforded me some opportunities that I may never have gotten if I wasn’t. I’ve rediscovered my passion for writing, which has given me the chance to get noticed. Of course, there’s this very blog, and Positivism, which have kept my momentum going. I don’t know if it’s entirely lucky, but my writing has been heard by, or more like criticized by, one of the nation’s recognizable journalists. And once again, I stand the chance of being published for international circulation.
As of today, I can say that my lucky streak continues, and has overflowed onto my professional side, as I’m being given the opportunity to work for a great company, doing the very thing I love doing, and being the very person I cannot deny I am. I only dreamed of the possibility of pursuing a path where my creativity, writing and advocacy becoming a career. And I won’t deny that I would love to work with people who know about and are, as far as I know, comfortable with my being HIV-positive, and I am completely flattered by the fact that they see potential in me.
Of course it’s going to be a huge decision to make, and for someone who is intimidated by change, a very daunting one. Getting uprooted from what has become my comfort zone of almost 5 years just leaves me scared to the bone. Before this, the biggest change in my life has been HIV. Heaven knows how I’ve gotten past it still sane, assuming of course that I have gotten past it, and that I am indeed still sane. Someone just loves throwing me curve balls I guess. And I just have to step up to the plate swinging.
So maybe luck is just one part of the equation. Maybe I have to be a bit carefree. Maybe I have to have faith. Maybe I have to muster up enough courage. Maybe I have to give in to the risks. Maybe I have to be willing to step out of the box. Then, and only then, can luck play its part. Like someone said, you can’t win the lottery if you don’t buy a ticket.
Monday, January 19, 2009
Sex After HIV
How time flies. I’ve been officially HIV positive for the past nine months now. It’s still quite overwhelming how so many people are interested in how it is to be living with HIV. Overwhelming, but reassuring. I usually get asked questions like How are you coping?, What were your symptoms?, Why did you get tested?, Where did you get it?, and so on, and so forth. But so far, the most intriguing question for most seems to be How is your sex life now?
So once and for all, let’s tackle that question. So how is my sex life now? My usual answer, which is the most concise and honest I can give, is Surprisingly, not zero. I know! Gasps all around, right? But that’s the truth.
When I found out I was HIV positive back in April, I was still certainly having sex for the next couple of weeks. Let’s just say I needed to fulfill my prior commitments. But certainly, everything was kept safe.
I did eventually need to get out of meeting those guys who had gotten used to having unprotected sex with me. My alibis included reasons like I wasn’t feeling well, I needed to be home early, I needed to work overtime, or at some point even claiming to be seeing someone exclusively. Yes, that many different alibis, and more.
Meeting new guys was kept to a minimum, mostly because I was still dealing with the HIV thing internally. For the new guys I’d meet, one requirement would be that they adhered strictly to having safe sex. That way, I didn’t need to convince them once we met. I never liked using condoms, so for the first time in history, I knew I was keeping the condom industry alive.
I had mellowed down so much that, upon finding out that a poz friend of mine was part of an orgy one night, I became so disappointed that I went out looking for some action of my own that same night. It was an If-you-can-do-it-so-can-I thing. I know, I was acting like I was such an angel when I really wasn’t. But it was just an outburst of emotion at the time.
Since that time, I’ve come to terms with the fact that I can still have sex. My libido is still alive. I actually think it’s gotten worse, and I’m not sure if it’s just a side effect of the ARVs. In truth, since finding out I had HIV, I’ve already managed to have sex with 20 different guys. What?! Twenty?! Sound like a lot? Not really, compared to the almost 100 different guys I had sex with during the same period a year before. That should put things into perspective.
Of those 20 different guys, only one of them knew I was HIV positive before we had sex. Deny as we all may, the stigma attached to HIV is still there, which makes it such a mood killer. And I was able to tell that one person, only because he was also HIV positive. And just to make things clear, NO, IT WAS NOT E!
And one more admission, I’ve had bareback sex with one of those 20 guys. What?! Unprotected sex?! Gasps again. Fortunately, it was with that one poz guy as well. I know, I know, poz on poz action is still not safe when done unprotected. But we both knew that. And we still did it, and had no regrets. Not even when we did it a second time. C’mon, give us a break! Anyway, I think we agreed that we’d use protection next time. Still can’t wait!
Okay, one last confession, I think I've completely lost the New Virginity of it all. I sort of started the year out with a bang. A gang bang. Four versus one, just after New Year. What?! OMG! It was at that time that I was reminded that I treat sex as my form of addiction. The vice I run to when I get depressed. And if you recall, New Years Day did leave me down in the dumps. So I drowned my sorrows away with sex. I know it’s not an excuse. But rest assured, it was surely, purely safe.
So there. That’s what my sex life has been like since finding out I was HIV positive. Relatively decent, but still far from being dead. I know some of you are still picking your jaws up off the floor. But hey, go ahead, cast your stones. It wouldn’t be the Human Immunodeficiency Virus if I wasn’t human. And that’s exactly what I am. Just human.
Friday, January 16, 2009
Overflow
I took another day off today from work, intending to go for this month’s med reload. To beat a deadline, I spent the morning going to and from Pampanga to submit some reports for work. After having lunch at home, I was on my way to RITM in Alabang. I got there at about 3:00 in the afternoon.
Walking to the building, I saw Ate going towards the other office with a bilao of pansit. She didn’t notice me and I wasn’t exactly there for the food, so I still headed for the clinic, expecting someone else was there while Ate was gone. But it was locked. So I reluctantly headed for the back office in the other building, dreading that I might walk into a celebration of some sort. I got to the door of the office, but the shy boy in me took over and I chickened out. I turned and walked back to the clinic and stood out on the corridor waiting for someone to show up.
After about 10 minutes, Ate passed by and I lurked closely behind. She welcomed me and asked how I was doing, and relayed to me how thankful Baby Nathan’s Dad was when they last came in for a check-up. I just laughed and smiled, not knowing exactly how to accept credit that wasn’t completely mine to take.
She took my Regimen Card from a pile, and told me to wait while she got my ARVs from the pharmacy. I was enjoying the time alone, when a familiar face showed up. It was Y. He seemed to recognize me and after a few minutes of awkwardness, I reminded him that we’d first met at San Lazaro back in April. Apparently he’d been confused whether he really met me there or it was just his imagination. He laughed finally realizing we went way back.
A while later, Ate came back with my ARVs, and a couple of more guys I’d met before came in to hang out. Together we trekked to the other office, and I was comfortable to be going with someone I knew. Stepping in, there were around 10 of us there. And after introductions all around, it was time to chow.
I honestly didn’t get to eat much, just like at the Christmas party, and I think I get that way when there’s a lot going on. And with everyone breaking up into pairs or little groups talking about everything under the sun, the observer in me was trying to take all the information in.
At one point, Ate walked into the office with a bunch of ARV supplies, where I noticed some big green boxes that I could not compare to the ARVs I’m getting now. My eagle eye didn’t fail me, and I read the label which said Protease Inhibitor, another type of ARV which was not part of my own regimen. I’m not really sure if that’s a good or a bad thing. But seeing how the container was comparable in size with a can of Pringles made me think twice about being envious.
One of the things that struck me most came from one of the last persons to walk into that room. Let’s call her S. S is HIV positive, and she got it from her husband who worked overseas as a seafarer, one of the at-risk groups for HIV. If I understood right, she was single now, either because she was widowed or divorced. She mentioned she had also lost a child, but I wasn’t brave enough to ask whether the kid was also HIV positive.
I actually first encountered her back in May or June amidst the standoff I was having with the San Lazaro doctors, when an online poz friend suggested I transfer to RITM and gave me her name and contact number in case I needed assistance. I never got to contact her that time, since I met U soon thereafter, who brought me to RITM.
Apparently, S is part of one of the HIV support groups, and she discussed the issues with the ARV supplies with us who were there. Apparently, the Global Fund grant that is in motion today is meant to supply the Philippines with ARVs and support up to 2010. But the wheels are already in motion for the country to qualify for another round of grants for the years after that.
The worst case, she says, is that there is an agreement between the Department of Health and the Philippine Health Insurance Company, or PhilHealth wherein PhilHealth is to shoulder ARVs for a number of years. Although I didn’t understand completely, she kept mentioning the word cooperative, and how the cooperative would eventually become self-sufficient and self-sustaining in being able to fund the need for ARVs. I’m imagining it’s a cooperative formed by and composed of those living with HIV and AIDS. If that happens, it would be very empowering, don’t you think?
So anyways, with so many details to remember and so much to think about, I was about ready to head home. I hitched a ride with and a couple of the guys, and S and another lady from another HIV support group left with us as well. S told more stories, about how she recovered from to skin and bones, and about how she was part of the group that lobbied for the grants that now provide us free ARVs, and that back in 2002, there was none to speak of. It was humbling to be in the presence of one of our apparent heroes who paved the way for us who currently live with HIV in the Philippines to be able to do just that. To live.
I, S and her lady friend got dropped off at Shangri-la Mall, where we chatted for a good 20 minutes more right smack in the middle of the sidewalk. S and I exchanged numbers, and she said that if I needed help in disclosing to members of my family, they would be very much willing to help. She did, thankfully, acknowledge that disclosing was a difficult thing and should happen in my own right time. She was also convincing me to consider getting involved in the HIV support groups, oblivious to how much I’ve already been dabbling in the field of advocacy. She used the metaphor of stepping out of my locked box, which I took to be my HIV closet, and I wasn’t planning to brag about how far out of my closet I’ve been strolling either. She probably didn’t know that there were people from her side of the fence that actually tried to keep me in my closet.
I dunno if it was the Bikolano blood in us both, but I felt a good pure vibe in S, despite her being part of one of the now seemingly notorious HIV advocacy groups. I was elated at how she explained the issues behind the future of our ARV supplies, which she did much better than the wicked Remedios lady that I watched on TV back in December. So with that, we went our separate ways and I headed home with another day of information overload, my first for 2009.
Saturday, November 15, 2008
Everybody Happy
Out of the house before 8:00 am, early for a Saturday, I trekked out to EDSA to get picked up. Picked up?! Yeah. I was sitting at the local Ministop when I got a call that he was about to drive by. I told him what I’d be wearing while walking out to wait up front. When he drove by, he waved me over and I stepped into his car and we drove off. This was bound to be a happy day.
Okay, before you start making conclusions, I was picked up by a friend who’d been reading my blog and wanted to help and visit Baby Nathan. I already had a box of Alactagrow with me, which E asked me pick up yesterday from someone near where I work. I half-blame E for my having to think up an excuse at work, for having powdered milk on hand. I just joked that it’s part of my weight gain program. Argh. Okay back to my pick-up story.
It was the first time we actually met – and no, he does not have HIV – so we had a lot to talk about during the long drive to Alabang. It was the first time I’d be going to the area not walking or in public transport, so I honestly had difficulty navigating us through Filinvest. I may as well have walked in front of the car to figure out where we were.
We had breakfast at Starbucks in Festival Mall, before walking to Shopwise, where we did our shopping. We only got a couple of boxes of milk, not being able to find cheaper brands of diapers available. We also got some food to split between Baby Nathan’s parents and Steve. My friend would’ve bought the Heraclene Baby Nathan needed at the Emilene’s Pharmacy nearby but it was out of stock. Darn! It would’ve cost less there, just PhP 15.85 each, compared to Mercury Drug’s PhP 16.10. So we looked for Watsons, where we got it for PhP 16.00 each. Good enough. We also got the Ferrous Sulfate that E mentioned Steve needed. The generic brand was good enough, costing PhP 75.00 for a hundred pieces.
From there, it was another case of the blind leading the blind, until we asked our way out to Civic Road, where I finally recognized where we were and figured out the right way to the RITM. The guard at the RITM gate at first wouldn’t let us in, asking us for the patient’s surname, which I really didn’t know. He finally gave way when I mentioned the magic word, which was Ate’s name. I think he understood.
At the ward, the nurse led us into the kid’s room, where he was awake in his dad’s lap. We put the bag of stuff for them in a corner, and I handed the nurse the stash of Heraclene. She tore off a piece and gave it to Nathan’s dad, keeping the rest with her. Apparently, the Heraclene capsule is split open and mixed with the baby’s milk for feeding. I also handed the nurse the stuff for Steve, who was still in isolation. She mentioned he was doing better, but felt the need to squeal on how Steve always puts up an attitude with whoever was attending to him, mentioning his special demands of Hansel, juice or candy, before heading off to deliver our goodies. She peeped in a few minutes later sending us Steve’s thanks, which for me, was both unexpected and unnecessary.
Baby Nathan’s senses were up and about, and he had his eyes glued to us newcomers almost the whole time. He was staring at me in particular, which worried me because he’d be letting out occasional whimpers, threatening to cry. The dad said it was probably because I was in a white shirt, which the kid was now extremely familiar with, thanks to his doctors and nurses. The kid was probably thinking I was one of those beings in white who came to give injections or take blood. Poor kiddo. Note to self: It’s a kid. Wear something colorful next time.
My friend had a million questions to ask Nathan’s dad, some of which I honestly was too shy to ask myself, so we both got to know more about the family. The dad worked as a waiter, and the mom in a videoke bar, but of course both had to stop since the kid got sick. They had to battle with being in another medical institution in Quezon City, before being referred to the RITM, where they finally found the proper care for the baby. Trust me it was a long story, which fast forwarded to today, where Baby Nathan was recovering from hitting almost rock bottom.
Baby Nathan’s condition is definitely improving, and his cheeks are filling up. Though still far from the ideal, he’s on his way. He is able to sit upright in his dad’s lap, and his legs are able to support his weight with some assistance from dad. Unlike the last time I saw him, where his hands were just clasped together and hardly moving, he is now giving out high-fives, and playfully slapping his dads face. Excellent.
His dad was even telling us how Baby Nathan now sort of knew when it was close to 8:00 am or 8:00 pm, his daily ARV schedule. So much so, that the Baby was working up a talent of trying to seal his lips, in protest of the impending dosage of probably not-so-yummy syrups. It had me giggling, because of the pilyo factor, and smiling, because that alertness was still a good sign.
His dad was also telling us about the Baby’s regular fevers, which I said might be caused by the ARVs, but I held off on pointing out how the same meds can make a grown man, as myself, running to the doctor for help. Fortunately, I don’t think Baby Nathan minded the fevers, because as his dad said, the kid could easily sleep through the spikes. He was the one kept up keeping an eye on the kid’s temperature, though, and reporting it to the nurses.
When asked what else they needed there, the dad didn’t really have much to ask for. He did point out how EQ diapers fit better than Pampers, which were just sliding off what was left of the kid’s butt. He also said the Baby was on some new medicine, which my friend said was an anti-bacterial. I’ll ask Ate about that the next time I talk to her. Other than that, they were good and happy. My friend did say that we should’ve brought some colorful toys for the baby, since all he had was a plastic airplane, which his dad said had already made several flights off the bed, thanks to the kid’s newfound strength. Great idea, don’t you think?
After more than an hour there, we bade them goodbye. He thanked us sincerely. I think it was a relief for the dad to have someone to talk to, while the mom was out. She’d been attending the regular activities of one of the so-called HIV advocacy groups, which came in the form of videoke sessions. I do hope that these groups are helping out in ways beyond that. Anyways...
From there, my friend treated me to lunch back in Festival Mall, which left me thinking that I had mistakenly included myself in Baby Nathan’s weight gain program. I love pasta and hate left-overs, so I was stuffed! We then faced the traffic back north, where I was dropped off at the bus stop while my friend headed off to work. It was a good day, and I dropped by the weekend sale at Landmark, and was super proud to get myself a number of nice shirts for just over PhP 100.00 each. Imagine that?! My early Christmas gift to myself I guess. I headed home to rest a bit, and even found energy to get myself a long-deserved haircut.
A lot of happiness today but... anything for mom? Okay, I’ll admit to being a schmuck. I offered to take her back to Landmark for the midnight sale after dinner, which she’d been hinting on since last week. It wasn’t so bad, I did some more shopping myself for some of my new godchildren, and… okay, okay, I got a couple of pairs of shorts for myself. I’d blown my Christmas budget on Baby Nathan already, so I decided to go all out. Hehehe. Eventually, I had to sneak off to the foodcourt to take my ARVs, after which I tried my best to convince my mom that we were done, before I started feeling the effects of the meds. So we walked home, and that was that.
As you can see from this long post, it was a looooong day. But I checked my list, and other than the three guys who I had to blow off having sex with today, I think everybody was happy.
Wednesday, October 22, 2008
Kuya (Big Brother)
Having worked extra over the weekend, I had a day and a half worth of vacation that I could offset with a workday. So in the midst of an agreement with E, who is part of the Positivism.ph team, we agreed to head for the RITM yesterday, Tuesday. More on Positivism.ph in a later post.
My personal agenda at the RITM would be to get a med reload. I only had enough medicines to last me till tonight, so one way or another I was bound to go. But my main purpose would be to just hang around with E and the resident counselor, who is also part of the Positivism.ph team.
So hang around I did. I helped out with some paperwork – literally – no typing or writing or thinking. Just collating and stapling. Mmm, repetitive work, gotta love it. Lunch with the counselor was great, too. I tried hard to keep up with her appetite. Hehehe.
E sent me a message that a friend of his was coming in. He asked me to talk to him, because he wasn’t feeling well. Me? Why me? Was this counseling? Yikes. The shy guy in me was trying to file an appeal. Ok, ok, let’s see what we can do.
Once I figured out which one he was, I took the counselor’s seat, and E's friend took a seat in front “my” desk. It turns out he was experiencing fevers after being on Nevirapine for about a week. Well, well, I knew exactly how that went, so that gave me a bit of confidence. I found myself opening up, and putting him at ease that what he was going through was a normal part of the process.
Hey, I actually thought I was good at that! A second guy actually came in having the same complaints, so again, I shared my story. It felt good being able to help in my own little way. Very kuya-like of me.
Later I received news that T was coming, with three new recruits. T is an old friend. An old friend who I was going to meet for the first time. So he would be an old-new friend. Confused? You see we’d been chatting online for more than five years now, if I’m not mistaken. There were plans to meet which never pushed through, but we never lost touch. Until finally, we discovered each other again, in the poz world this time.
So finally, finally, finally, we met. The only thing was, he didn’t realize it was me. I thought maybe it was too much for me to expect us to be instantly chummy, so I didn’t pursue it, and just stuck by E, who kept exchanging jokes, quips and the occasional elbow with me. T’s three new recruits had gone through their paces with the doctor, and he invited us all for dinner at nearby Festival Mall, still oblivious of who I was exactly.
We headed to the mall, but let the newbies take the car. E, his friend and I trekked on foot, since we couldn’t all fit. Getting there, we had dinner, where I showed off my new found appetite. We were almost through with dinner before T finally figured out who I was, which was what broke the ice for us. He’s been reading this blog regularly, so he knows what things I’ve been going through. He probably sees me as a willing guinea pig for the poz journey.
I wasn’t the kuya or big brother of the group age-wise, but when it came to the HIV journey, my mere six-months already made me the kuya of kuyas. So on the trip home, T encouraged his new recruits to bombard me with all the questions they had, which really weren’t much. I think it was enough for them to see that T, E and I were smiling, laughing, and living... enough to see that we were normal... enough to assure them that they, too, would be okay.
I was the last to get off at Guadalupe, before which T thanked me for having this blog and sharing my experiences. T is to be thanked, too, for the work that he does with these kids. I’ve never been a kuya in my life. But regardless of whether it made me feel old, I realized last night, it felt swell to be a kuya.
Thursday, October 09, 2008
House, Not Home
It was Wednesday night. I had spent ten hours at the office, making money to pay the bills. I took an hour-long bus ride home, standing in the aisle the whole way. Instead of taking a tricycle in, I took the ten-minute walk home, meaning to save fifteen pesos, which could buy me two cups of rice for lunch the next day. And all this for what?
I walked into the house, and changed from my work clothes. I hadn’t even eaten dinner, or sat down at all, when my mom started bombarding me with things she needed me to do. Things that weren’t really urgent. Things that could wait till I at least sat down.
Peace and quiet helps an introvert like me recover from a long day. And it was clear she didn’t care enough to give it to me. So I raised my talk-to-the-hand hand to shush her, and went on to have my dinner.
Then it started. She started sighing, and clutching her stomach in alleged pain. She told me that if I’d come home one day and she wasn’t there, I’d probably find her in the hospital. Then she asked me if I had medicines. Mylanta. I shook my head.
And what did I do after all this? Absolutely nothing. It was happening again. She was acting up again. Craving for attention. The attention that’s been lacking since her favorite son left the country. The same attention I was deprived of since childhood.
She’d done this before, lying in bed, claiming she “almost had a stroke”. Complaining that half her body was numb. I’m not stupid. You don’t almost have a stroke. It’s either you do, or you don’t. That time, I turned my back for two minutes, and the next thing I know, she was out of bed, all dressed up, ready to go to the mall. Retrogression at its finest. Imagine how my eyes rolled.
So this time around, I was already in The-Boy-Who-Cried-Wolf mode. I was eating dinner, not giving her even a glance. I had my eyes glued to the television and was letting everything from her go in one ear and out the other.
Hospital? I don’t know what psychic powers she used to see that coming. I knew she was acting when she asked me if I had medicines. I never stocked medicines and she knows it. At least not until I started on ARVs, and that she doesn’t know. And of all medicines, Mylanta? What for? Gas? Indigestion? Hell.
I admit I was so tempted to shoot her bad act down by telling her, “I have HIV, and you’re complaining about gas?” But like always, I just put my poker face on and kept quiet, making sure I locked myself in my room as quickly as possible, safe from the attention-starved monster. It reminded me why she doesn’t deserve to know I have HIV. Because she doesn’t really care.
In times like these, I usually call my sister. Because no one else would believe my story. Because only she knows my mom and the craziness she’s capable of.
Good thing she was home, and I was able to vent. We share the same wavelength, and vent as we do to each other, we never fail to find humor in all the insanity that life throws at us. By the end of it all, I was laughing again, smiling again.
I slept soundly through the night, and rushed through my morning routine so I could leave for work and escape any residual craziness at the house. Yes. This is my house, but it is not home. My room is my home. My bed is my home. My friends are my home. My sister is my home. My solitude is my home.
Saturday, September 27, 2008
Heading Home
Another week has passed. A seemingly regular week despite the visit to RITM last Tuesday. And, I’m doing fine with my new ARV medication. I can also say finally that I’ve gotten over the dizziness of Efavirenz. Excellent. I’ve always wanted to be able to say I’ve been able to settle into my final and for-life ARV meds, so I can write it off as a daily habit and try to get into new activities. But since it’s taken longer than I thought, I’m just maintaining what I already have, which are family, work and life as I know it, and giving my doctors and meds the time they need to figure me out.
Yesterday, I dropped by the Social Hygiene Clinic again first thing in the morning, primarily to get my second Penicillin shot for my Syphilis. I got there early, but Dra. Diana Mendoza was already there. She was attending to another guy down at the lab though, so I waited patiently upstairs.
I’ve seen for the past couple of visits there, they they’ve been busier than ever at the SHC. That early, there were other people waiting with me, when before I practically had them all to myself. Oh, no, I wasn’t jealous.
I had known and seen previously, that UNICEF had infused additional supplies and support into the SHC, in terms of HIV Rapid Test Kits, HIV Serodia Screening Kits, and other medications for Sexually Transmitted Infections. Now this is advocacy. Apparently, HIV testing has been made a standard option even for the pregnant women who get check-ups at the Manila Health Department. And why not? We must remember that HIV is not a homosexual disease. It was great to see they’re able to test more people, which should help our cause.
When Dra. Diana came up, she even had one guy with her, apparently, newly diagnosed with HIV. She invited me into the clinic, and introduced us to each other, and mentioned she’d be referring and personally taking him to the H4 Ward in San Lazaro later that day. Isn’t she the best?
She mentioned I’d been diagnosed there too, but transferred to the RITM. She was about to try to explain why I transferred from San Lazaro, but I cut her off, smiling and said “oh, never mind, never mind…” I just thought we’d spare this kid the unnecessary complications for now.
She then asked if she could just have breakfast before attending to me. Of course! She invited the other guy into her office, too, as I’d decline having already had breakfast before leaving the house that morning. I heard her telling the guy my story, my diagnosis, my constant visits there, and my journey through ARVs. I’m sure I’m a pretty good example to show this kid that life goes on, in spite of HIV.
Really having her hands full so early in the morning, without Dra. Malou there, she mixed my medications, and attended quickly to a couple of pregnant women out in the corridor, before telling me to go on into the clinic area of her room. So, bang! I got my shot, and she told me she wouldn’t hold me much longer, knowing I would be trekking to work from there, and having to go back to her new bunso or baby in her office.
It’s just really, really great have some reasons to see and visit them there. I haven’t really had time to witness or attend the support groups that hold session there, or help out in any way, but still, their warmth keeps me coming back.
So let me just put the word out again. They’re still conducting free HIV testing at the Social Hygiene Clinic of the Manila Health Department. They’re located along Quiricada Street in Manila, which is between the Bambang and Tayuman Stations of the LRT. Their building is right across the main gate of San Lazaro Hospital. For more information, you can call Dra. Malou Tan at (+632) 711-6942.
Oh and you might really want to call before you go there, just to make sure they’re not out doing field work. I’ve needed to shift my next supposedly Friday-shot-day to Thursday, because they’ll be out doing voluntary testing on members of the Philippine Coast Guard on Friday. Yeah, they’ve been that busy lately.
But they’re great. Going there has always felt like heading back home.
Wednesday, September 24, 2008
Bye to Zido
IUPAC name 1-4-azido-5-hydroxymethyl tetrahydrofuran-2-yl-5-methylpyrimidine-2,4-dione. Formula C10H13N5O4. Zidovudine or azidothymidine (AZT), also called ZDV is a nucleoside analog reverse transcriptase inhibitor (NRTI), a type of antiretroviral drug. It was the first approved for treatment of HIV. It is also sold under the names Retrovir and Retrovis, and as an ingredient in Combivir, Epzicom and Trizivir.
Zidovudine was the first drug approved for the treatment of AIDS and HIV infection. Jerome Horwitz of Barbara Ann Karmanos Cancer Institute and Wayne State University School of Medicine first synthesized AZT in 1964, under a US National Institutes of Health (NIH) grant. AZT was originally intended to treat cancer, but was shelved after it proved ineffective in treating cancer in mice.
In February 1985, Samuel Broder, Hiroaki Mitsuya, and Robert Yarchoan, three scientists in the National Cancer Institute (NCI), collaborating with Janet Rideout and several other scientists at Burroughs Wellcome (now GlaxoSmithKline), started working on it as an AIDS drug. After showing that this drug was an effective agent against HIV in vitro, the NCI team conducted the initial phase 1 clinical trial that provided evidence that it could increase CD4 counts in AIDS patients.
Modern treatment regimens typically use lower dosages (e.g. 300 mg) two times a day. As of 1996, AZT, like other antiretroviral drugs, is almost always used as part of highly active antiretroviral therapy (HAART). That is, it is combined with other drugs in order to prevent mutation of HIV into an AZT-resistant form.
Common side effects of AZT include nausea, headache, changes in body fat, and discoloration of fingernails and toenails. More severe side effects include anemia and bone marrow suppression, which can be overcome using erythropoietin or darbepoetin treatments. These unwanted side effects might be caused by the sensitivity of the alpha-DNA polymerase in the cell mitochondria. AZT has been shown to work additively or synergistically with many anti-HIV agents; however, acyclovir and ribavirin decrease the antiviral effect of AZT. Drugs that inhibit hepatic glucuronidation, such as indomethacin, acetylsalicylic acid (Aspirin) and trimethoprim, decrease the elimination rate and increase the toxicity.
AZT does not destroy the HIV infection, but only delays the progression of the disease and the replication of virus, even at very high doses. During prolonged AZT treatment HIV has the ability to gain an increased resistance to AZT by mutation of the reverse transcriptase. A study showed that AZT could not impede the resumption of virus production, and eventually cells treated with AZT produced viruses as much as the untreated cells. So as to slow the development of resistance, it is generally recommended that AZT be given in combination with another reverse transcriptase inhibitor and an antiretroviral from another group, such as a protease inhibitor or a non-nucleoside reverse transcriptase inhibitor.
I had been on my first month on the Lamivudine+Zidovudine combination, so I had been scheduled by the doctor yesterday for a complete blood count. I took the afternoon off from work, and trekked to the RITM, getting there at exactly 2:00 pm. I was sent straight to the lab to have my blood extracted, so the results would be available the same time the doctor was ready to meet me. I never realized it took as little as less than 30 minutes to complete a CBC lab test. Technology rocks.
After hanging out a couple of hours with the other clients there, even having an afternoon snack with the regular counselor, the results were finally realeased and the doctor had finished all the other clients before me. I was a bit surprised by the verdict, another change in medication. The doctor and Ate discussed a bit and agreed they were to make the change. Apparently, my Hemoglobin count had dropped from 140+ units to 100+ units, a side effect of Zidovudine. Ate even pointed out that my lips were a bit pale, something I never noticed myself. The doctor looked under my lower eyelid, and said it still wasn't too noticeable. But yes, they'd shift me over to another medication.
I hadn't brought what was left of my Lamu+Zido meds, so I promised I'd bring it on my next visit. I was given in place of it, solo Lamivudine tablets, plus the new one, Tenofovir, under the brand name Viread. It all seemed like a great move, as the doctor pointed out I'd just have to drink all three of my medications once a day in the evening. One tablet of Efavirenz, two tiny tablets of Lamivudine, and one teardrop-shaped tablet of Tenofovir. Not too bad. When I asked if I'd need to watch out for any side effects, the doctor said there are none. Even better.
So last night, I started my new nightly habit. The doctor advised me to comeback after about three months for another CBC, just to make sure my Hemoglobin has bounced back, but no other problems should be encountered. Hopefully, things will be all good.
Goodbye, Zidovudine.
