My Less Dramatic HIV Story
Posted by Pozziepinoy on 5:06 PM
Hi Pozziepinoy
I want to share my own HIV story for a variety of reasons: because most stories I chance upon are always gloomy and evokes a personal doomsday apocalyptic scenario, which, I believe, shouldn’t be, because as you always say, there is still life, even with a hundred thousand copies of HIV cells. J This one’s quite long, and I don’t know if you’d be patient enough to translate this, as this is written in taglish, so its more engaging for most of us to read. I hope you and everyone else would take time to read. Just to lighten up the mood.
Here it goes:
Early December 2012: my entire family and I found out about my HIV status in the most unpretty fashion! I was confined in the hospital for 10 days due to pneumonia. Eh jusko napaka healthy living ko, nagygym pa ako 5x a week. So san galing? Asymptomatic, so ayun. Infectious Diseases Doctor recommended an HIV test. Positive. In less than a day, mother, father older brother, older sister, and yaya found out about the big news, also some tito and tita. At kung nakakaintindi lang ang mga pusa at aso namin, alam na din nilang may HIV ang amo nila. Si yaya umiyak daw sabi ng ate ko, sabay tanong kung ano ba yung HIV. Ang classic ni yaya! So inexplain pa ni sister.
If there is one thing na ipinagmamalaki ko about myself and my family, I think it’s the proactivity/proactiveness (?). Our next question is always: whats next? So When we found out, each of them cried, I guess for just about 10 minutes. Asked some few questions, and kept on saying: you’re gonna be alright. I guess we owe these a lot to the Infectious Doctor who assured us that modern medicines are VERY effective, and that with proper treatment, HIV positives can live even longer than negative counterparts. Add to that my brother who’s a nurse, so medyo may mga alam siya dito.
So whats next nga ba? RITM, treatment agad.
LESSON 1: my life changed in a moment. I honestly felt that the world fell one me, pero nasalo ko agad in a matter of seconds. Feeling ko ako si Atlas na pasan ang mundo, but I was able to put the world beside me in a snap. I heard voices telling myself that “Diyan ka muna, I can’t let you crush me just like that.”
I’ve always been the tough one in the family, the independent, career-oriented one. I keep on saying na I can make it alone. I lived in the south, worked in Makati, I can stand not going home for almost a year. Now I am back in the arms of my family who I admit, I have forgotten for a while because of my ME MYSELF attitude. And they took me back open arms, walang hesitation, walang tanong, walang keme. Even my dad who is a retired policeman na di ko maintindhan until before we found out kung okay lang bas a kanya pagiging bading ko. Now I know, okay na okay lang pala. Eh pati HIV okay nga lang eh. Hindi lang talaga kami lahat expressive in the family, so para kaming mga engot na nagkakapaan sa isat isa, while in fact gusto naming lahat pag usapan na pala ang mga bagay bagay, but since the arrival of this fabulous disease, things have tremendously changed for the better. It’s true, the worst can bring out the best in us as a people.
First, we always eat together now. Father always checks on me like im always on my last breath (praning lang talaga siya, retired policeman kasi eh). Mother is just the same, sweet, caring, nakakairita at times, but aren’t all moms? Sister and brother have been sweeter and warmer as ever. Ipinagdadrive ako kahit 500 meters away slang ang destination and would magically conjure any food I desired to eat. I cannot believe it! We hold hands, hug each other and say I love you’s. Not that we haven’t for the past 26 years, but now, I really feel its sincerity, and spontaneity and warmth. My sister is married and lives separately na, but since this HIV shit, she spends time here with me every weekends. And my God, we always just watch the Stepford Wives. Paulit ulit, at tawang tawa pa din kami.
Sabi ko nga sa best friend ko na kasalukuyang kinakabog ng alopecia, kung etong HIV na na ito ang kapalit ng “ideal family” set up na ito, then by all means, id have it again and again!
And so back to my medical timeline: Still waiting for the confirmatory result, which is a prerequisite bago ako asikasuhin sa RITM. Ang tagal dumating! Until it finally did sometime this January 2013. The entire family was excited. We started learning about CD4 counts, Viral Loads, etc. At ang tanong ng Bayan, Ilan ang CD4 count ko? (keep on reading, mamaya irereveal ko.)
Two days before my chosen date to go to RITM to begin treatment, nilagnat ako ng 40.5C. So I was rushed to the hospital again. Then the Infectious Doctor decided to have me transferred to RITM, and since I lived in the South, I was brought there via an ambulance! PAKAK! Hindi lahat ng tao may ambulance experience. And it was so stressful, kasi I was strapped and secured to the pole handles sa loob, if tumaob ang ambulance, maiipit ako. Shit. But I thought, this is so gay, pam pelikula, I cannot wait to tell this to my friends!
So I spent the next 5 days sa RITM. They almost extracted 10 gallons of blood from me performing all tests attempting to find out the cause of the mystery fever that hit me.
Tinest ako for mareng syphilis, ate Hepa B, at kung ano ano pang STD. Clear naman lahat. Until the consultant doctors got involved, and finally said na purely Viral lang ang dumapo sa akin, and is non-HIV related (medyo confusing yung statement nay un, but I trust them, otherwise). Biniro pa ako na baka may Chikingunya ako. I said, wtf is that? Parang kapatid ng dengue pala. And true enough, it disappeared on the 4th day, kasi pag viruses, self-limiting, usually disappear in 3-5 days.
Whew.
And btw, ang CD4 ko was 28. Mas madami lang ng kaunti yung CD4 ko sa earth age ko. I’m 26. Mas madami pa ata mga anak ni Dolphy at Erap.
This is what devastated me! I never cried when I found out I had HIV, but this one got me, kasi I got so praning! Malapit na mag-off ang immune system ko putres na HIV cells yan! And I was classified HIVstage3. AIDS na next level, but I didn’t really care, I just want more CD4!
Then I cried, and my dad was like: “wag ka nga umiyak ang hina ng loob mo, hanggat buhay ako wala kang puproblemahin”. That was the first time father verbally affirmed that to me-to us. Obviously, he was trying to make me feel better. It was also the first time I was able to hug my dad, which was a magical moment. At dahil nga mabilis kami maka move on sa mga bagay bagay, nanuod nalang kami ng nanay ko ng Romy and Michelle’s High School reunion sa laptop. I love that film! So kahit 234 times ko na siya napanuod tawang tawa pa din ako. Feeling ko may split personality ako kasi 30 minutes ago cryola ang drama, ngayon tawa ako ng tawa.
Well ganun talaga yun.
LESSON 2: dahil super low na ng CD4 count ko, I need to be on guard. ALWAYS. Kung pwede lang mag space suit! Kahit sa house nag mamask ako whenever I can, kahit na vacuum sealed na ang bahay namin. As in, pati windows sa room ko, naka silicone glue para walang alikabok, puro aircon lang na naka regulate sa 24C kasi yun daw ideal temp sabi ni Doc. Kulang nalang uminom ako ng alcohol, at bottled water na lahat ng iniinom ko kahit may mineral water tank na kami. Pati pang toothbrush at mumog ko bottled water. Kulang nalang pati pang ligo ko mineral water! Lahat ng tao napapraning sa bahay. Ibinukod naming ang sarili kong baso, utensils at pinggan, not because of mythical believes na nakakahawa ang HIV, but because baka magka bacteria o germs from other users. Pati sponge na ginagamit sa panghugas, separate yung akin. I don’t know if may prophylactic benefits ito but at least may peace of mind kaming lahat. Pag nagluluto, naka mask si yaya kasi daw baka matalsikan ng laway ang mga pagkaing niluluto pag chumichika siya while cooking. Nakakaloka.
Then mom and I had several face masks customized for me. Gawa sa cotton/silk, I think. I ordered for 25 pieces, 12 different colors. Wash and Wear and drama nito. Because I made a vow that even if 1000 na ang CD4 ko, mag mamask ako sa mga lugar with more than 30 people. Eh mahilig pa naman ako manuod ng sine at may pagka mall rat kami ng boyfriend ko. So these masks will have to go with my outfit, thus, the 12 colors. Who said we cant be fashionable with masks? Actually, I think of my masks more of a fashion accessory. Just quite sad here that people tend to stare. I usually just stare back, and mas powerful ang stare ko, I think, because all they can focus on and see are my eyes. So lahat ng visual energies nila naka direct sa mata ko with no distractions. Plus the fact that I am always well-dressed, and quite well-built, so I give out the impression that I am well, and you might even be more sickly that I am, and that this mask im wearing is purely for preventive purposes. Bakit sa Hongkong, Shanghai at Japan casualan lang ang masks? Dito para silang nakakita ng multo. Nakakainis.
Anyway, the day after I got discharged from RITM, my sister, brother and I flew to RITM para sa medicines. Na skip ko na yung usual process kasi nga sandamakmak na dugo na nakuha sa akin when I was confined so I had finished all blood tests, PCP, TB tests, etc. First time ko pumunta sa ARG, I was with my brother and sister. Napansin namin na ang ingay sa waiting lounge kasi yung mga bakla sa loob tawa ng tawa. Parang ang saya saya! Parang yung mga parlor sa pelikula, but don’t get me wrong, im not demeaning them, in fact, I enjoy yung ganong abiance, and I don’t mind being surrounded by our effeminate brothers. Yung sister ko may pagka becky din kasi so aliw na aliw kami. Yung kuya ko naman kung sino sinong chinichika dun sa labas.
Im almost certainly sure na 95% ng mga andun ay positive, May naispotan pa nga akong cutie dun, pero good boy ako! At may isa dun na nagbubulungan sabi ng sister ko pinaguusapan ako. Well, cute daw ako, she overheard kasi I took off my mask for some moments para uminom ng tubig at suminga. Nasilayan nila ang mukha ko. Naisip ko, naku, soon baka maging meeting place ito ng mga positive’s! Which is quite good, kasi at least alam agad na may HIV kung magkainlovan, at I’m assuming educated and responsible na lahat kahit papaano, di tulad sa grindr at planet romeo, manghuhula ka pa. LOL. Honestly, gusto ko makipagchikahan sa kanila and have friends, kaso naka mask kasi ako parang naweiweirdan ako, at feeling ko ang kapal ng mask ko so ang hina ng boses na naririnig nila.
Anyway, as I was saying, nasa atin naman talaga ang happiness.
Now On the heavier side, my HIV doctor also told me to have my eye checked for CMV (basta virus siya na nakakabulag at common sa mga taong mababa ang CD4). So I flew to the Asian hospital to have my eyes checked. Thank god all clear! And doctor said to see him every three months. But wait. Three months is too long for me, so I said, I wanted it monthly. He said it’s not recommended kasi masyado close monitoring, but I insisted otherwise. I want peace of mind! Kung pwede nga lang weekly eh! Jusko ayoko ata mabulag! Nagpeplaystation na nga lang ako buong araw ngayon, mabubulag pa ako! (btw I resigned fromm work muna to recuperate. And made a deal with my family I will only start working again kapag 500+ na CD4 ko). So father tries to provide me with me things that I need para di ako ma bore. He keeps on asking if “may games ka pa bas a PS3” as if nauubos ang games.
LESSON 3: ARV’s must be taken religiously for life!!! So I’ve decided to take my ARV’s every 10am/10pm. Apart from the prophylaxis na iniinom ko. The first 5 days ok naman, pero after, I started feeling nauseous, nakakaloka talaga para kong nasusuka pero nagugutom at the same time! Pwede palang mangyare yun. Tapos yung isang gamot common side effect ay rash! So super afraid ako! So far wala naman, I am on my 2nd week na. Btw, Nevirapine and Lamivudine/Zidovudine ang regimen ko, two tablets lang yun. Compounded yung Lami/Zido into one. Nung second na punta ko dun, may mga nakachika ako sa RITM na nagka allergy at rash sa gamot na ito so nakakapraning talaga! pero once masurpass ko naman ang trial period, that means the rash might never come at all...
On our second visit to the ARG, mas nagka urge ako to talk to the other people there. I spoke with one who had rash due to the Nevirapine tabs in his 2nd day and switched to Efavirenz, to which he had hot flushes and frequent dreams naman. He said 4 years na siyang positive, and at the back of my mind, I wanted to ask immediately anong CD4 niya. Actually, that’s what I always wanna ask! Gusto ko makakilala ng may kasing baba ng CD4 ko, wala lang, for the sake of it. But I feel like asking for one’s CD4 immediately is quite impolite, or unethical. So chika chika muna then I segued. “so ilan na CD4 mo?” he said 750 something.. sabi ko “wow! Medyo above normal pa yun. Ang galing ah.” Then he asked, “ikaw?” sabi ko, “28. Buti buhay buhay pa ako, no? gusto ko nga sila pangalanan isa isa eh.” Tapos natawa na lang siya.
As I was saying, After a few days din, ang nausea ay nagsusubside na. So my body must be adapting well! And I must say, talagang pag patak ng 10AM/10PM nasa bibig ko na ang mga gamot. Sana mapanindigan ko to, actually, madali lang naman eh. HIV doctor said most HIV cases go out of hand because of non compliance and unhealthy livin din. Naman, libre na nga gamot, trabaho ko nalang inumin, sasablay pa ba ako? At tig dalawang tablet na nga lang to kakatamaran ko pa. Sabi nga ni mama, ang daya bakit ang hypertension walang libreng gamot. Bakit nga ba?
To those who are on Nevirapine, there’s a new batch of produces, mas maliit na siya by 50%!!! Its just slightly bigger than a 25mg iterax. I’m so certain that soon, the other medicines would shrink as well. Wala lang, may psychological effect kasi for me yung size ng medicine, although wala naman akong issue with taking it in due to the size. Pag mas maliit kasi mas feeling ko na parang “supplement” lang ang dating. We call my ARV’s “SUPERVITAMINS”. LOL
Moving on to other matters:
I’ve already told my BF for three years about my fabulous disease. Nagpacheck siya, negative naman. Confident ako negative siya kasi 7 months ago pa kami last nagkemehan. Kasi super cautious ako talaga, kahit simpleng sipon di ako makikipag chorva. Eh for the past 7 months I’ve been rhinitic. Til yun nga bombshell yung pneumonia nung December. We're still together and he promised never to leave me.
My best friend knows, and as I’ve mentioned, inaalopecia siya. Ang best friend ko ay isang maliit na babae, mga kasing tangkad ni Gloria arroyo na medyo payat. Ako naman ay 5’10. So pag nag uusap kami mas trip ko naka upo o higa, kasi nakatungo ako lagi. Share lang. Sobrang love ko ito, kasi kahit gisingin ko siya ng 2AM para magpamassage, kahit nananaginip pa siya, ang tanong niya agad: “saang part?” We love to name things and items close to us. Yung kotse ko pinangalanan namin, pati yung cabinet na binili ko sa SM, minsan pati yung yung mga pimples namin pinapangalanan namin, yung tipong pang bold star na pangalan. We’re still thinking of a name para sa HIV ko. Ang corny.
Alam na din ng ibang kapamilya ko. Sabi nina mama at brother, wag ikakahiya itong HIV. Walang may gusto nito. At sila daw ay kebs lang kung malaman ng buong earth about this. Actually, mas trip ko magpa press conference to announce my status, kasi ang ayoko talaga is yung paulit ulit ko ikukuwento, parang ito, ang haba haba diba?! So sana pwedeng celebrity style- press conference para may open forum, everyone happy. So parang mas lumakas loob ko na mag “out” kasi nga hesitant ako before baka ayaw ng family malaman ng iba. Sila lang naman iniisip ko. Eh kung ok sa kanila, ok sa akin, eh di Masaya! But ive decided na ayaw ko muna sabihin sa mga friends ko, kasi feeling ko medyo chumaka ako ng konti. Nagkaron ng kaunting pimples (mga 4-5), nawalan ng hulma ang muscles, medyo naging de-buffed, stuff like that. I don’t want to give the impression na may sakit ako at isipin nilang mamamatay na ako dahil sa itsura ko (although di naman ako mukhang dying, maarte lang ako sige)…Gusto ko buff, shiny and glowing pa din ako even with HIV. Literally glowing, parang Uranium. Yung tipong iisipin nila na gusto nila magka HIV kasi nga nakakaganda ito (kembot.). Yan ang isa sa mga goals ko. Eh dati pa naman akong flight attendant so a big chunk of my social sphere is from that sector. Medyo obsessed pa naman sila (ako din, dati) sa itsura, siyempre, part of work. So ayoko na makikita nila ako na di ako kagandahan. Marketing professional din ako, so I guess, collectively, all these stigmas are results of incorrect marketing. So one of my life’s objectives is to “sell” the idea that it’s okay (but not recommended) to have HIV, by looking good always, being happy, and generally just being normal like everyone else. I want to put a face to the disease, and i am preparing beginning this so its a face that will hopefully eradicate old stigmas. PAK! And world peace.
I’ve also mentioned that I already resigned from work. It breaks my heart because I was doing so well already and I feel like may upcoming promotion ako. And nakakaloka because before I got hospitalized, I had to lay off 10 people from our department. Prior to that I had to initially lay off 9 others. Then ako nagresign, LOL. I had to tell my boss about my case, and he was totally understanding. He and my other boss were hoping that I could still come back after I get well (which in my terms is if 500+ na CD count ko). But I told him na I might explore other options and am considering strongly to work in the south na lang after all this. Consuelo ko na ito sa pamilya ko. Masaya naman pala dito, and father always insists that i dont have to work and i will never get hungry. But of course, I dont want that, its gonna be boring. We have a few businesses, pero si brother na bahala dun, career person ako eh. Siya yung entrepreneurial. So once mag 500+ ako, I’ll start working immediately. And they insist I do volunteer work once I get well. At least man lang mabayaran ko yung mga libreng gamot at doctor ko through acts of volunteerism. And seriously, I want to do peer counselling. For now, I imposed upon myself na 6 months muna ako house arrest. Wala munang lakwatsa sa mall at matataong lugar. Mag pupushup nalang muna ako for workout at lakad lakad sa labas every morning til I get my CD4’s up. As for sex life… there’s always porn and my right hand…for now. (wink)
Another thing: pwede ako magka anak sabi ni DOC. parang sperm washing ek ek. And si best friend willing maging Host mother. Why not?! As in dead serious kami about this in the future. At least yung magiging anak namin ay walang puproblemahin: financially, emotionally, at lahat na.
So to recap: alam na ng family ko, okay sila, okay din ako, I believe im on the way to recovery even with a CD4 count of 28. Sabi ni Doc it could rise up to 400 in a year and can reach thousands in a couple of years, basta NEVER miss my ARV’s, and be healthy as healthy as I could. And this is something I am looking forward to every day. It fuels me to live more and be more happy, be more thankful and be more appreciative of this second life. I’ve also renewed my rusting relationship with the Creator. Everything just feels much, much better.
Looking back at all these which happened in less than 2 months, there’s been less drama for me, for my family. Ang nagging pinaka madrama pa nga ay yung best friend ko, actually. Si boyfriend, medyo, but the drama award, I think, goes to my best friend. I guess im just lucky to have a strong support system- family, friends, an ever loving boyfriend who never left me and chooses never to leave me. Sometimes nawawala sa isip ko na may HIV ako, which is both a good and bad thing especially na 28 lang ang CD4 ko. Good thing because I know that unlike others, I don’t let my illness define me. After all, it’s true- I’m a lot more than just 350,000 copies of HIV cells and a very low 28 CD4 count. Magna Cum Laude ata ako, may masters degree, and I have the wealth I never knew I had- my family, friends and my boyfriend. Sasapakin ko ang aangal! Chos. Naaalala ko nalang din na may HIV ako pag iinom na ako ng gamot, and then that’s it. Or siguro pag tinamaan na naman ako ng opportunistic infection...sana wag naman, :(
On the other hand, I think it’s a bad thing na nakakalimutan ko kasi baka makalimutan ko uminom ng gamot, or maging unhealthy ang lifestyle ko pag tumaas na ang CD4 count ko. Actually yun lang naiisip kong bad side ng “pagkalimot” about my HIV. But then again, this is all up to me. Choice ko kung mangyare man yung mga binanggit ko, with or without HIV.
So there, I’ve said my piece. Sana yung ibang readers may natutunan sa little story ko. Medyo newbie pa din ako with our disease, but I’m off with a good start, Im convinced. Its quite hard to come across a “happy” and “light” HIV story sa net! Parang lahat pang MMK level at parang lahat ng nababasa ko gusto magpakamatay, lugmok sa sadness and all that. Not that we have to take our disease lightly and not be serious about it, but there might be no point adding more chuvaness to the gravity of the disease. Well I don’t expect everyone to have the same situation as mine, but I guess it all starts from ourselves as well, right? We decide how we will take things, and if we decide to take things lightly and happily, I am VERY sure mayroon at mayroong paraan.
Thanks!
Sincerely,
Jin
P.S.
Im quite confused, which HUB do you belong to? If RITM, maybe we can meet there, some time. dun din hub ko eh. Well kahit hi-hello lang, because im an avid reader of your blog. Ginagawa kong pampatulog actually. Minsan nga di pa ako makatulog because I want to read more. At pati comments matyaga kong binabasa hahaha!
POZZIEPINOY’S RESPONSE
Hi Jin.
Thanks for your email. I really enjoyed reading your HIV journey that is why I decided not to translate it anymore as it will ruin the story.
You are lucky that you have a great and loving family and partner. I believe that you are a good person that is why everybody is treating you back with love and support. I know with your attitude towards HIV, your health will rebound fast. Just stay happy and love back all the people who are supporting you right now.
Once again, thank you for the email and the kind words about the blog.
Stay healthy,
Pozziepinoy
"WE ARE ALL IN THIS TOGETHER.
NO PLHIV is alone with his or her struggle with HIV!"
-Pozziepinoy-
© Copyright. All Rights Reserved by Pozziepinoy 2012
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Tags: HIV Manila, HIV Philippines, AIDS Manila, AIDS Philippines, HIV/AIDS Manila, HIV/AIDS Philippines
