Salt and Sun

A Filipina loving life and living with lupus

Building our home

I almost gave up on the dream of building our own house.  It just didn’t seem possible especially after the lupus came into my life. But here we are now, in a big yellow house on a farm and I have never been happiest or more content.  And this place, my new happy place, is one of the best things we have done in our life so far.

When we first got married we were given our own unit at one of my family’s apartments.  We had that space renovated and decorated and that was where our firstborn grew up.  When my father died, we eventually ended up moving back to my parent’s house because after several crises in the family, it seemed best to stay close to my mother.  My baby Viktor Ludovik (or Bambam as we call him) was born in my mother’s house and we have been living in mom’s house for six years already, when we decided to build our home.

We didn’t actually decide to build a house.  It wasn’t a proper plan, it started with wanting to fence in a part of the farm I inherited from my father and then the fence became a plan for a pavilion with a room– someplace to stay at the farm– if we happen to be there on weekends.  And then the drawings slowly became something else, the bamboo pavilion became a concrete structure and the concrete structure became a house with a living room and bedrooms– and we suddenly realized this was no simple pavilion, I was drawing a home. And it turned into an obsession of sorts because really, do we have the resources to build a new home? We weren’t exactly sure but we went ahead and just did it.  Thank god for sudden crazy decisions. Haha!

I drew the plans for our house.  I am no architect, I was a literature major in college. 🙂 But we built the house the way everybody else in the provinces build their houses, with a trusted foreman and a construction crew you know from your home town.  Drawings and plans are made by the home owner and execution and suggestions are made by the foreman.  I was the project manager and in charge of design and canvassing for supplies, purchasing and planning each and every detail of this new home.  My husband was in charge of executing the design and made  it all happen by getting a superb construction  crew from his hometown.  He checked progress everyday and kept the crew happy and got along great with them.  On days when the crew was too busy or doing something critical, he himself would cook their meals for lunch or dinner.  He solved most of the crises that came up during construction and I got to do all the happy stuff like choosing and buying tiles and lighting and moldings, designing our window grilles, choosing paint colors, etc.  For both of us, this was a labor of love, a passion project.  But it seemed to me he was the one more determined to build a real home for our family.  He always said that my mother was one of the nicest people around, but it will never ever  be comfortable living in your mother in law’s house.

I remember going for my regular check up with my rheumatologist and telling him I was a bit stressed out because we decided to build a house and he looked at me, truly perplexed, and asked: why didn’t you just hire and architect and a contractor?  Because we couldn’t afford it Doc, I laughingly told him. He was a bit stern throughout the whole thing, telling me my symptoms were brought about by stress from the project but I really didn’t care. I was ruthless about the whole thing — this home will be built no matter what.  And it was. And now here it is.  And we are in debt and struggling again but I can’t find it in my heart to regret anything because I am content and happy here.

This place has given me a sense of peace that I haven’t felt in a long time.  And I am happy. Just totally, plainly, happy. We now have a place of our own where our children can grow up knowing this is home.

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My toddler Bambam, looking very happy, in front of our yellow house with the red roof.

mornings at home

Mornings at our new house begin like this.

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Simple but wonderful breakfasts like this in  the farm.

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Grass cutter weekend, this is a view of the open field in front of our house.

Our new home

I drew this house and we built it from scratch, it’s not the best design, I know, but it suits our needs and I have found happiness here.

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Jackie enjoying our hammock in front of our open kitchen/bar in the pavilion.

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Old furniture from our ancestral home find new life in our pavilion.

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Our yellow pavilion home and playground.

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kite flying weekend at home

beach vibe in our house

My friends says the house has a beach house vibe and I agree. 🙂

Here are some of  the details of the house.  The pavilion is very airy and tropical and as some friends say, has a beach house vibe to it.  The kitchen is located here and we have our big dining table that I inherited from my father’s Quezon house, a big bamboo daybed where everybody lounges or sleeps.  And lastly (everyone’s favorite) the rattan hammock in the middle  of the pavilion.  I have a lot more improvements on my mind and the whole house is still a work in progress.

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Our colorful woven mat from Samar on our bamboo day bed.

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Our daybed and hammock

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My living room where I work or sometimes just stare into space.

We have only been here for half a year but the house has already been a venue for many family parties and get together with friends. Weekends are always a feast it seems, but I figured this is only because people  in our lives are still excited over the new place and that’s probably why we have been having a constant stream of guests these past months.  And also, my mother says it’s good luck for a new house to always have guests and festivities.  And I don’t mind a bit of luck anytime.

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More weekend feasts of Filipino fare.

The open field and a small play ground beside our home has given the boys more space to play and lots of room to grow.  We have been living for so long near the highway, in a commercial area where it’s obviously cramped and one is always scared the kids might get side swiped by a passing vehicle that this sudden freedom has done wonders for my youngest child.  Now he runs freely in the open field all day. 🙂

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Our playground beside the house

tug of war in the yard

tug of war games in the field

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My boy with his kite.

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kite flying weekend at home

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Camping in the backyard with family from Manila on a weekend visit to our farm.

We now  also have a growing family of dogs.  Before it was hard to keep dogs in  our old  house because we lacked space, but now we have a couple of new dogs and new puppies as well.  Life is good.

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Mary our golden retriever

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Bambam and his playmate, Sophie

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Our new puppies from our adopted aspin, Chocoleit.

 

 

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My youngest boy loves trains and dogs. Beside him is our adopted dog, Chocoleit.

Sometimes I think this is too much happiness and then I become scared that things will turn out bad all of a sudden because I am so happy.  But I guess that is the price of happiness, the fear of loss.

Never mind then.  When all this is over, I will look back and think I had this– this moment of pure bliss.  And no one can ever take that away.  Thank you for everything.  For giving me this.  I am content.

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Falling in love

date at the Arabela Restaurant

In 2003 I was a full time activist who was recently deployed from my university to become a staff and researcher of a peasant/fisherfolk organization in the Southern Tagalog region. At that time I was determined to move from the student sector and student’s issues and begin serving the basic masses in earnest. I wanted to immerse myself in the issues of the Philippine peasantry and be a part of the long term campaign for genuine agrarian reform. It was while working for the peasant sector that I met my future husband, Ruel.

It wasn’t love at first sight. When I first met him, he didn’t strike me as anything special and he didn’t seem interested in me either (I later learned that at that time he had a girlfriend, another activist named Nancy). He was tall and thin and dark. Not what you’d call good looking but he was a quiet man and had an air of kindness about him. But I hardly noticed him and I certainly would have laughed if anybody told me back then that he was to be the future father of my sons.

A few months passed and I was active and busy doing research work in the different provinces of the region (we were writing a book on fisherfolk issues in the region) when we found out that Ruel and another companion were shot by elements of the Philippine military under the leadership of then Col. Jovito Palparan. His companion, Choy Napoles, died during the ambush but Ruel survived with a minor gunshot wound in his arm. He was brought from his home province in Mindoro to the Orthopedic Hospital in Manila where he recovered under the care of the fisherfolk group PAMALAKAYA.

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In Singapore

It was during the dramatic events of that time when this man I met a few months before came into focus as another victim of the human rights abuses of the Philippine military against activists or leftists. For the time of Jovito Palparan during the reign of Gloria Macapagal Arroyo was a time of great terror in the Southern Tagalog Region. Many activists became martyrs, victims of summary executions and ambushes, and all because they were brave enough to speak up and fight for the rights of the poor, to fight for their rights as peasants and fisherfolk of the region. I met many wonderful people, mostly peasant leaders and organic intellectuals, during my stay at ST (short for Southern Tagalog). Many are dead and gone or incarcerated as criminals under false charges. The man I would build a family with was one of the victims of the Terror. When we met in the offices of the peasant group KASAMA-TK, he was working as an organizer of the fisherfolk group PAMALAKAYA. He has recovered from his wounds but was still dealing with post traumatic stress disorder. He would have terrible dreams, panic attacks and could not deal with loud noises and hated the firecrackers of New Year revelries. Until now, ten years into our marriage and the nightmares and the panic attacks still come up as unexplained illnesses. He would be driving the car and suddenly be unable to breathe and have pains in his chest that we thought was a heart attack only to find out later on that his heart was fine.   Perhaps it will always be that way with him.

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In Tagaytay, when I turned thirty.

We started out as friends in those sparse offices in Sto. Tomas. I didn’t live there full time like the other internal refugees as I would go home to our house to take care of my ailing father and manage our faltering family business as I did my duties as a researcher for the peasant sector. We coordinated on some of the work, like writing the newspapers for the peasants and doing that helped us get to know each other better. The quiet and serious man I hardly noticed when we first met turned out to be funny and gay in the most unexpected of ways. He was jologs and irreverent and so unlike the many “grim and determined” activists I have encountered before.   For the first time in months, I met someone I could be comfortable with, who was funny and fresh. At a time of fear and sadness, when other comrades had been abducted and were summarily executed by the Terror, this friend was a comfort and a respite from the nightmares.

Other things caught my attention as well. The fact that he was humble made him stand out. Activists are very intelligent people, many of them outspoken leader types, who sometimes come across as braggarts. He was none of that. He was quiet but sure of himself in that same quiet way.

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Vinzons Hall, U.P.

He was no intellectual, he wasn’t smart the way a college graduate is smart but learned many things as an activists and he was sharp and intelligent.

When we got together, he struck me sometimes as too reckless and in a hurry but I also appreciated the fact that while I wondered endlessly about where our relationship was headed, he told me without blinking an eye that he loved me and he was sure of it and that he would marry me someday despite what everybody else said.

He scared the hell out of me but his decisiveness took my breath away. There was none of the ambiguity of relationships I had witnessed in the past. No mistaken signals and misinterpretations, no silences and need for spaces between people. None of the “it’s not you, it’s me…” issues. Just a man in love who wanted to spend the rest of his life with his beloved. It was that simple and it was that powerful.

I still remember the moment when I knew for sure that we liked each other. We were all at a weeklong meeting, and I remember one night I was sitting at the cafeteria for dinner and I looked up and he was standing by the doorway looking at me intently. And I smiled and he smiled back. And I knew. I knew for sure that we wanted one another. It was magic.

On the way home from that meeting, we sat beside each other on the bus home. He took my hand somewhere between SM Megamall and the Shangri-la Plaza and he said he loved me. It was like a corny movie and I was laughing all throughout but I said yes to him that moment and never looked back.

Two years after that bus ride we got married and started our life together.

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Recovery: My first ever lupus flare. 

A week after our deliriously happy renewal of vows, I started feeling weak, with joint pains and a slight fever. I took to bed as I usually do, thinking this is one of my usual afternoon fevers and it will pass after a few days. I was tired from the eventful month that was April, we celebrated Anton’s ninth birthday with his yearly garage party but we also went for a weekend getaway at a country club nearby where the whole family went swimming and did bowling and basketball. It was wonderful and everybody had fun. I enjoyed bowling again, something I haven’t done since college and my husband enjoyed discovering he was good at bowling. A week after the birthday bash, we then celebrated our tenth anniversary renewal of vows, it was a small affair but was stressful in its own happy way. I guess this was all too much for me, all this happiness in the hottest month of the year.

So the slight fever I had, turned into a high grade fever after a couple of days and I was barely able to walk by then and was dealing with sudden full body pain, a bone pain that was so awful, even air from the fan was painful.

April 25th, Saturday night, the pain was too much already and I could not get up to pee anymore, we all decided to go to the emergency room at a nearby hospital because I didn’t know anymore what was happening and I was losing it. At the ER the bone pain was too much, it was unbearable, I was crying for pain meds. It was coupled with a crushing headache, where even light was painful, where at some point I started vomiting from the pain. I passed out and woke up at a different hospital. They transferred me because there was no lupus doctor who will manage my case at our local hospital. I would have wanted to have been confined at the Philippine General Hospital where one of my rheumatologists is a consultant but things happened so fast and I was too far gone to make any decisions myself. No matter. My other rheumatologist took care of me at the Asian Hospital and I started feeling better a few days after confinement. I stayed a week at the hospital. They upped my steroids and had me take all sorts of tests including a very expensive MRI. Happily all the tests came out normal (no pneumonia, no burst veins in the brain, no protein in the urine and kidney involvement, etc) but clearly I was in a flare my rheumy said. They think an infection got to me and I had a blockage in my sinus that might have been the cause as well. But the antibiotics and mega doses of steroids must have taken care of everything. I am now home, somewhere between fine and not fine.

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This is me when I was released from the hospital.

I am still quite weak and in the first few days back home I was barely able to pee or bathe on my own. I am still not ok, I can feel it in my body, how it tires easily, gets confused easily. But mostly, I am scared to push myself too far in case something new comes up.

I honestly thought I was going to die in that ER. I couldn’t understand the pain. All that pain. When I woke up the next day, I thought to myself, well if I had died then that would have been it. I wouldn’t have been able to say goodbye to the boys in the midst of all that. Bone pain is the worst thing ever. I shudder to think of having to go through that again. Bone pain with migraine is a whole other creature in itself. Far too sinister. In hindsight, I don’t think I was in any real danger back there. It was a lupus flare and my first ever hospitalization with this disease, but all that pain could have fooled anyone that the end has come.

I feel so guilty having to put my husband through that experience. He was a wreck. I saw it in the exhausted way he slept in the chair beside me at the hospital. I was so sad. Thinking to myself, after our happy second wedding, we have this. A reminder that lupus is always at my door.

I am now in recovery mode, been staying indoors these part couple of weeks, avoiding the sun and being very careful not to tire myself out. Mostly I am in bed. I have no choice, I DO tire easily and I think I am still in a flare of some sort.

I made minestrone soup yesterday, which is a good sign I think, a wanting-to-feel- better kind of thing I decided to do. I wanted to eat it and imagined myself getting better from it. But I tired myself out making the damn thing and ended up not being able to go to my doctor’s check up in the afternoon. Boohoo! I protest! I protest this weak body!

I will see the doctor on Monday instead. In the meantime, look at this picture of my hearty minestrone soup. I feel better just looking at it. Recovery I tell myself. I am on my way to recovery.

Minestrone soup by Raia

My wanting-to-get-better minestrone soup.

10th Anniversary Renewal of Vows

ten years after

I always said I wanted to get married again on our tenth wedding anniversary and we did, we finally did!

It was family affair with our whole household in tow.  We chose a beautiful little chapel on a hill near the legendary Taal lake and we stayed at a really nice provincial hotel for the weekend.  It was just us and our loved ones and it was perfect.

I was so happy.  It felt like the culmination of a lot of things.  It felt like a triumph and a promise of more to come.  It was happiness crystallized in a moment.

I kept crying thinking about it and how it would be during the ceremony, I would listen to love songs that we chose to play for the renewal and I kept crying.  It was so crazy, how I went maudlin over the whole thing.

Anyway, I don’t want to have to rave too much about it.  I will share our vows and the pictures, I think the pictures will speak for themselves.  I hope my boys remember this wedding renewal when they grow up and remember the happiness and the love.

My wedding renewal of vow:

Ruel,

Sampung taon na tayong mag asawa! Ang bilis ng ng panahon. Madami na tayong pinagdaanan, mga napatunayan sa isa’t isa, mga away at pagbabati. Kung mayroon akong pinanghahawakan ngayon, ito ay ang pagkapanalig ko sa iyong pagmamahal sa akin, sa pamilya natin, sa tibay at lakas mo na sinasandigan ko sa araw araw. Nakita ko na sa sampung taon natin ang “for richer or for poorer” kasi nagsimula tayo na walang wala, naghirap tayo together, yung tipong wala tayong pambili ng gatas, nagbubukas ka ng alkansya natin, hanggang sa nagkanegosyo tayo, naging maayos ang buhay natin at ngayon ay nasusuportahan ng ayos ang pamilya natin. Nakita ko na sa atin ang “in sickness and in health” kasi nung nagkasakit ako, lagi mo akong alagang alaga at never mo pinaramdam sa akin na pabigat ako sa iyo. Araw araw nagpapasalamat ako kasi napakabait at maunawain mo. Sa panahon ng mga matinding pagsubok sa buhay natin, ikaw lagi ang pinagkukunan ko ng lakas, ikaw ang boses na nagsasabi sa akin “lilipas din ito at magiging masaya tayo uli” at sa bawat paglampas natin sa mga pagsubok, sa bawat tagumpay natin, matibay ang loob kong nandiyan ka lang sa tabi ko– ang tahimik kong kabiyak na puno ng lakas at kabaitan. Ipagdadasal ko na matagal na matagal pa ang “til death do us part” kasi palalakihin pa natin mga anak natin. Sigurado ako madami pa tayong mabubuong magagandang alaala bilang pamilya at masaya ako kasi ganon pa rin tayo sa isa’t isa, na laging nagtatawanan at nagtitisismisan sa araw araw, magaan na magaan pa rin ang relasyon natin, at ikaw pa rin ang aking one and true best friend. Mahal na mahal kita mylabs. Happy ten years sa atin!

The Pictures

household picOnly our family as guests for this event.

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Our pre-ceremony photo ops at the hotel.

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Our beautiful venue, the chapel at the Marian Orchard in Balete, Batangas.

The small chapel was perfect for our intimate event.

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Our wedding march.  I chose to go with our baby Bambam and my husband marched with our eldest boy, Anton.

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Our venue was a really small chapel that was just right for our event.

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As we said our vows of renewal, I held my husband’s shaking hand to help ease his nervousness. It was a beautiful moment and I will never forget it for the rest of my life.

the kiss

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After the ceremony, my mother was crying so much. She kept telling me, I wish your Tatay were still here to see this.

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With our boys and our placards! Haha!

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Bambam calls this the “Wacky! Wacky!”

mommy and anton renewal pic

I love this shot of me and my eldest after the event.  So sweet how he kept holding on to that placard of our names.

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This is me with my little hooligan.  I hope he remembers this day when he’s all grown up.

best friend pic

Me and my husband each had one guest, each other’s best friends.  This is my best friend Geng. 🙂

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The now obligatory “selfie” shot.  But I think this is my favorite picture of all because it showed how happy we were.

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I had to have a wedding cake of course and it had to be a pink ombre cake (of course)!

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My vanity shot.  I love how happy I am here.

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Forgive me, I just had to upload a picture of my beautiful fabric bouquet.

We still Do

And this is us. And “We Still do!”  And always will.

Weekend in Bali

Our Bali trip started with a weekend stay at the beach. We chose the very affordable Tune Hotel in Legian, an easy two minutes walk to the Double Six beach.  There are many hotels in Legian but we needed a really cheap place to stay for a couple of nights before we moved to our real hotel in Nusa Dua for our conference.  The Tune cost us P1,000+ per night (around $22USD) and is very conveniently located near the beach so I chose that.  The rooms are tiny though, as in there was hardly any place to move around in there but it was clean and the bed was good so we made do, thinking we will be moving to a better hotel in a couple of days anyway.

The Tune is tucked away inside a compound and right outside were tourist shops and spas, cheap eateries and restaurants, money changers, convenience stores, salons and hotels side by side each other on the way to the beach. The beach scene was very relaxing indeed but the sand not as white or clean as our pristine beaches in the Philippines. The waves there are quite big (and scary for someone like me who doesn’t really swim), but as with all beaches it had that wonderful vibe of people enjoying themselves. Walking around the beach before sunset– watching families have fun, people playing catch with their pets and vendors selling the beautiful Balinese sailing kites– I had the sudden realization that I was happy and this was just the break I needed from all my cares.  I missed the kids though. The beach will always be more enjoyable with one’s kids.

IMG_8456The bamboo lined pathway from the hotel to the main street and the beach

The bars and cafes had colorful bean bags out on the sand where people listened to reggae music or folk songs while drinking cocktails or their Indonesian Bintang beers. Other spots were romantic with beautiful round lanterns and candlelit tables.

We ate seafood on the beach and midnight snacks at an affordable eatery called Warung Murah. On our last night at the beach we ate at this hotel restaurant, a real romantic dinner date, which we haven’t done in a long time, and it was perfect as well.

We didn’t do the usual tourist itineraries, day tours to this and that site, we just mostly relaxed on the beach, ate out and had massages.

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My husband lounging on beach side bean bags along Legian, Bali.

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Bintang beer and a mocktail while watching the beach sunset

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The courtyard at the Sicilian Spa in Legian, Bali

We had the honeymoon package at the Sicilian Spa right beside Tune Hotel. It was three hours of indulgence that began with a Balinese massage, then we had a green tea scrub and yogurt rub (the green tea had a nice clean smell to it but the yogurt was cold and felt weird at first). After the scrub you are supposed to take a shower and then immerse yourselves in a hot flower bath while they serve you ginger tea and cookies.  When you are finished with the flower bath, they will bring you upstairs and finish the whole package with a facial.

Honeymoon package at Sicilian Spa Bali

Couple’s room at a Balinese Spa

It was our first time to experience a spa package and it was blissful. I loved the Balinese massage, so good and unlike any massage I have experienced before. The flower bath was a first time as well.  A hot bath on its own is relaxing enough but a hot bath filled with flower petals while sipping tea and munching on cookies with your loved one is an experience to remember. Very romantic. I couldn’t help taking pictures of the bath for posterity!

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The wonderful flower bath after our green tea and yogurt scrub

I must say the spa and our beach dates were the highlight of that weekend.

Although one thing that marred our introduction to Bali was almost getting scammed by money changers near our hotel. We tried to have $100 changed so we had enough cash before the conference but the person tried to confuse us with all these bills and counting and recounting and then when we found out that the money was short he tried getting back all the bills again, I finally told my husband the man was trying to scam us, he took back our hundred dollar bill from the table and we quickly ran out of there. I later read online that this was a common scam in Bali. All I was ready for were the taxi scams (and they really do try to scam you at the airport when you arrive, good thing I read up and knew the taxi rates to Legian!) and didn’t realize we had to be wary of money changers as well. But anyway, these were minor setbacks and learning experiences on the road. Mostly, our weekend in Bali was a happy one and even though I felt unprepared for this whole trip, we started our conference refreshed, relaxed and ready.

Monday came, and we said goodbye to the Tune Hotel and moved on to Nusa Dua where our conference was located.

Raia and Ruel at Sicilian Spa Bali

Getting back my bearings

Bali sunset

Amazing Bali sunset

“Enjoy Bali but stay out of the sun” my rheumatologist admonished before I went to visit Bali for a week last November 2014.  Most people go to Bali with the sun and beaches in mind so I didn’t really know what to do with that advice.  Good thing though, I didn’t really go there to be out on the beach.  We were invited to a conference by a world association of newspapers that gave us an international award for our company’s social responsibility program a couple of years ago.  It was to be a venue for this year’s awarding and a chance for past winners to meet up.  We were supposed to share best practices and gather ideas from each other on how to engage the youth with reading and journalism.

The conference was held at the world class Westin Resort in Nusa Dua.  We were feted, and fed and it was three days of presentations, the conference was relaxed and fun.  Not like our first time, when we were nervous winners and felt like fish out of water.  I still felt a lot like someone not in their depth, we were after all small printers amongst the world’s top newspapers and editors.  But being there to just listen and be amazed by the work many of the world’s newspapers did to engage young readers was inspiring and gave me the drive to continue with our company’s social responsibility program which lay stagnant after I gave birth and was subsequently diagnosed with lupus.

But the whole thing made me deeply sad as well.  I am an internationally awarded entrepreneur and we were there in that conference listening to other winners and hearing them talk about what they have been doing and I couldn’t join in, because I haven’t done anything new in the past couple of years because of lupus.

But despite that sadness, I also came home determined to get back my bearings and try to move beyond where lupus has brought me.  I tell myself that 2015 is the year when I take the tentative first steps to going back to my former work load, when lupus was not yet part of the equation.  When I get back to the things that have been halted because of the wolf. I sometimes think I have already adjusted to my new normal but to be truthful, it has been a long and painful journey.  And I’m not there yet.

I still dream about going on remission and getting back to where I was before this all happened.  Perhaps that’s me still in denial.  Because really, we all know I will never go back to the way things were before.  And so I try to imagine how to go about doing things differently because I have been in a rut these past couple of years and aside from this blog and not being so depressed, not much has happened to me in terms of work because I have mostly been in bed, exhausted with one new thing or another.

I want to get back to my old self has been this mantra. This silent wish.

My husband tells me that he thinks I can only operate on 50%-70% of my old capacity and that I should just accept that.  That I should start a new routine based on that and we will work from there.  Seems like a simple plan but it’s hard to plan when lupus keeps changing its mind.  But I have simple goals.  Like get up each morning.

You think that’s easy enough but when you wake up each day achy and feverish with flu like symptoms, it’s hard to get up.  I deal with that every morning.  Feeling so tired so early each day is hard enough, what bothers me more is that people may think I’m just being lazy.

I want to be able to stop prednisone or taper it down but every time we try to taper it something comes up and I get sick with something else and we have to go back up to where we were before. I am starting to hate the moonface this drug has given me.  I want to look like my old self.

I want to be consistently productive everyday but I am not able to keep doing that because of lupus fog.  It’s so awful this fog.  Sitting in front of the computer everyday trying to do your task and feeling so slow and struggling with your thoughts.  I am starting to feel I have gone dumb but know it’s the fog that does this to me.  There are days when it literally feels like you are trying to see through a haze.  And my head starts to hurt and that’s when I give up.  Those are the saddest times, when I know I can’t work because of the lupus fog.

And then there is the fatigue.  The feeling of going up the stairs and realizing you may not have the strength to get yourself through the door.  Of sitting down exhausted and gasping for air simply because you tried walking across the mall.  Such simple tasks that seem monumental with lupus fatigue.  I sit and envy the people walking briskly past me, I say to myself I used to be one of them, always in such a hurry.

I honestly don’t know how to get back my bearings.  How I can get back to work like before.  I always wonder and say to myself, I could have done more, maybe have a new business venture to run, if lupus had not hit me at my prime.

But the regrets have not been helping, and I realized this line of thinking was what kept me from moving beyond my new handicap.

It may be the fog but I don’t know what to say next.  I wish I had a plan but there can be no plans with lupus.  Lupus does what it wants, that’s what I learned these past couple of years of living with it.  What I have now are little nuggets of ideas and things that must be done that I hold on to each day.  That seems to work better than my old way of doing things.  Before I had elaborate plans and to do lists and schedules.  Now I just hold to one thing each day, and make sure I don’t forget that one thing and make sure I do it until I finish.

Like our website.  Our small company has been around seven years, we have a blog and free ads and facebook and twitter but no actual website. I had my former assistants deal with it but was never quite happy with their efforts and then they left for greener pastures and that was that.  I forgot about the website until about a month ago when I thought suddenly that the freakin’ website must be done and finished!

So it was this thing that I obsessed over and did each day until I figured everything out and did it.  It took me maybe a couple of weeks to finish but I was so happy with it and realized I can still do small things, despite the fatigue and aches and daily fevers and forgetfulness and fog.

It made me happy. It made me hope that I can still accomplish many things despite lupus.  One day at a time, I say.  One day at a time.

Will I ever reclaim my old self? Perhaps not, there is no old self anymore, not with lupus.  And this new self, it’s never going to be the same, will never be as good but it’s a self that I am wresting away from lupus. It is a self that I am reclaiming from the ravages of this disease.

I imagine myself rising from the ashes of this disease and feeling as if reborn and knowing that despite the frailties of the body, I will overcome.

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The Bear

It was the great storm named Milenyo when it happened, our house was flooded waist deep and the jalousie windows in our bedrooms started exploding from the wind and rain, my baby Anton was just around six months then, and we struggled to get him to safety thinking the flood could get worse and our house’s second floor was not safe anymore. We were shouting and knocking on my parent’s printing press next door. Begging them to open but my father couldn’t do anything, the winds were howling and I was crying but my brother was at the foot of their stairs and had a gun in his hand, saying if they open the door he would shoot us right there and then. I was crying for help and they couldn’t do anything. He was there and he said he’d shoot my baby if they tried to help.

As long as I live, I will never forget this. My anger and helplessness amid the rain and wind. You think I exaggerate when I tell this story but anyone who’s had to deal with drug addiction and violence in their family would know this monster and recognize this scene.

How did it ever come this? To be in the midst of a storm and have your sibling threaten your family’s life in that crisis. I don’t know either. Only that he’s always been the monster. Even when we were kids, me and Victor would hide from him because he always barked orders at us, he always shouted and acted strict and scary. He did scare us. Growing up, I always thought eldest brothers were bad.

We knew of all the problems he brought in — how he was kicked out of schools, how one night while drunk he crashed the family jeep into a nearby rice field, how he was caught doing drugs early on. He was sent first to a seminary school and when that didn’t work out, he was sent to an aunt in Germany, after a year of that he finally ended up in a Catholic school in faraway Mindanao, to my uncle the doctor and that’s where he was able to graduate from high school thru the intercession of this influential uncle of ours.

A year after my Tatay sent him to the US, to his best friend Tito Lony. And that’s where my kuya lived for most of his adult life. He got married there at nineteen (this another terrible story of young love, violence, meddling parents, divorce and a poor baby with cerebral palsy left in the care of her maternal grandparents). We also ended up living in the States during this time where I spent a year there, in fourth grade, and where my brother Victor graduated as the High School Salutatorian.

My parents would visit our eldest from time to time, we went to Alaska when he had another “wife”, she was pregnant then. That visit turned into harrowing months of dealing with two psychotic lovers who were both destructive. I was in college by this time and knew better. I came to know clearly by then how awful a man my brother turned out to be and how he attracted and got into relationships with equally problematic women who suffered under his drug use and violence.

In hindsight, we were probably better off for not having grown up with him. But then, Tatay got sick with cirrhosis in 1999. And my mother got it into her head to bring home our kuya with this notion that he would come home and take care of the family and the business because Tatay was unwell. My kuya, an undocumented alien resident in the US for most of the twelve years he was there, came home for good and life for our dysfunctional family went from bad to worst.

We all knew no good could come of his homecoming. He did not take care of the family or the business. He became its biggest burden. He refused to work and instead asked for a regular allowance. He tried to take over one of my Tatay’s other business but that closed shop soon after he did. We had a private swimming pool for rent that is now useless and dilapidated because he took over that as well. My parents had apartments as their passive income, he took those apartments for himself and they let him take it out of sheer exhaustion from the daily battles with him. This all happened while I was away. I was a full time activist then and played a peripheral role in the family’s affairs. When he became violent, when even our own mother got hurt in one of his violent fits, they decided to put him into a drug rehabilitation center. We thought then that would help change him, but he’s been there thrice since then, and we no longer entertain any hope that anybody or anything could change my brother.

When things got really bad — the family’s core business got into trouble and my parents became enamored of casino gambling to the point that our printing press and home were up for foreclosure with a local bank — I came home for good and took over.

I left the movement to take care of my ailing father and had this messianic notion I would save the family from ruin. Looking back, I believe I did just that. We sold off existing idle assets (raw lands my parents owned) paid off all their debts, had enough money to pay for Tatay’s medical expenses and my father gave me seed money to start my own business. That business continues to sustain our extended family to this day.

But I also gained many enemies in our family when I took over. I changed the old system in our small business and stepped on many toes in the process but in the midst of that crisis, the people who were in my way were those who were contributing to the downfall of my family. So they had to go, it was that simple to me and I still stand by that to this day.

My eldest brother resented that his little sister was suddenly the boss and he hated that I was our father’s favorite. This anger manifested in many ways but always violently. He once hit me in the face and kicked me because I told him to turn down the volume on the TV. After that I was sent away to live in one of our offices because my parents could not control him or stand up to him. After I got married, it was still more of the same. He attacked our house twice but my husband fought back of course and they almost killed each other during these fights. Those were terrible times. I remember him attacking me while I was having breakfast with my father soon after I had my first born. He said we were too noisy in the breakfast room, he threw a chair at me and my two month old baby and it was my father who took the blow. He is that kind of person — he would hit his siblings, his children, his girlfriends for no good reason. He would verbally abuse our mother and threaten her with violence. He would get into debt and have my parents pay for it. After my father died, he has consistently sold portions of our inheritance for gambling, for drugs, for women, all the while pretending he was setting up a business and being a better man. And our family, my parents and his girlfriends, were his co-dependents, his enablers. The ones who opposed him, like myself, became sworn enemies.

I have many more tales of him but this will become a long litany of violence against family and against women.

A few months ago, because my mother could no longer afford the rehabilitation center, we asked the help of the police. He was in my mother’s house, yet again harassing her for money. They were fighting and he kept shouting at her, throwing objects around the room, moving in on my mother, pinning her to the wall. I saw the look of fear in her eyes and I heard the crazy in his voice. I knew that if I didn’t do anything, he would harm her then. I took my sons downstairs, we called the police and he was arrested that night.

As the police took him away, I was shaking with relief and crying uncontrollably, thinking to myself what have I done to him? But soon after, after the haze of emotion and tears, I realized that was the best thing we could have done in a situation where we were again threatened with violence from him. My kuya was put in jail. It was the last straw. We have spent years avoiding this, the embarrassment of it, the gossip from the rest of the town. But we could not put up with him and his drug use anymore.

He got out on bail with the help of money from relatives and he now tells everybody that he has a bad mother and conniving siblings. Perhaps those who do not know him and our story would sympathize with him. I have heard them say it all the time throughout the years – that he is the eldest and we must bow down to the eldest, that he is a man and I must give way to this man, that I did not deserve to stay with the family or become its financial head because a girl should be given away to her husband and not stay with her family. Such feudal patriarchal crap I have had to put up with.

I have come a long way since then. I have been forced to fight for all that I have today and yet I know many still think me no good because I wasn’t born with a cock.

It never ends, this will be a lifelong struggle I know. Against men like my brother and those who think he is right to do us violence. I still wonder everyday how things could have changed for the better if my parents had done things differently. Were they bad parents to him? Perhaps. But I think they did what they thought best, no matter that it wasn’t good enough. As an adult, it comes to a point when you just stop blaming your parents for your fucked up life and take responsibility for yourself. My brother has not taken responsibility for anything he has ever done in his life.

I don’t know if there is hope for him or if we have it in our power to save him. But we all tried. Rehab hasn’t worked and talking to him, babying him and tolerating him didn’t work, giving him money for his own business didn’t work, sending him to work abroad didn’t work. One scheme and plan after another. All these years we have tried. We no longer have the energy or the finances to support each new thing.

I do know we don’t deserve the trauma and violence he has done us and our family through all these years. I know for sure that as long as he remains a drug dependent, he cannot be an active part of our life and I do that to protect myself and my young family against his violence.

There are things that can never be forgotten but I try very hard to let old wounds heal. For my own peace, I must let all the bad blood between us recede into a part of myself that is calm and objective.

And so every day I fight the hate and anger and I try to remember that despite everything he is my kuya. I have two young sons now and I wish that their relationship will have none of the jealousy and violence that has marked my relationship with my oldest sibling.

One thing that helped me put things in perspective is this children’s book titled “Mama, Do You Love Me?” by Barbara M, Joosse. It’s a beautiful and simple story of unconditional love. And it took a while for me to appreciate it but now I keep it in my desk everyday as a reminder that despite everything, somewhere deep inside each of us is that common humanity, that hope for something/for someone better that may one day save us from ourselves.

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“Mama, do you love me?”

“Yes, I do, Dear One.”

“How much?”

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I love you more than the raven loves his treasure

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I’ll love you until the umiak flies into the darkness, till the stars turn to fish in the sky…

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What if I put salmon in your parka, ermine in your mittens and lemmings in your mukluks?

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What if I threw water at our lamp? Then Dear One, I would be very angry. But still, I would love you.

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What if I turned into a musk-ox? Then I would be surprised.

What if I turned into a walrus? Then I would be surprised and a little scared.

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What if I stayed away and sang with the wolves and slept in a cave?

Then, Dear One, I would be very sad. But still, I would love you.

mama7“What if I turned into a polar bear, and I was the meanest bear you ever saw and I had sharp, shiny teeth, and I chased you into your tent and you cried?”

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Then I would be very surprised and very scared.

But still, inside the bear, you would still be you, and I would love you.

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I will love you forever and for always, because you are my Dear One.

When I read this I remind myself that beneath the bear that has become my brother, inside is still him, my parent’s first born, their first loved.

That as much as I have decided to protect myself and my life against this bear, I live with hope that someday, the brother we have loved will emerge from that darkness.

Liliw: The perfect day trip

It’s something I’ve been wanting to do, reading up about it through other people’s blogs and wanting to just go and do it. And so one morning a few weeks ago, I woke up and told my husband that I wanted to go to Liliw.

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Liliw main street with fiesta buntings

Liliw is a small town in Laguna located at the foothills of the mystical Mt. Banahaw. It’s an out-of-the-way town and to go to it you have to take this small road off the national highway and work your way toward the town amidst rice fields and farms and houses that typify the Philippine countryside. On the drive there I wondered how people must have taken the trip in and out of Liliw in the old days, when it was just a dirt road. People must have been trapped in there for months on end during the rainy season when the roads turned to mud. I wondered how this small town tucked at the foot of a mountain in the middle of nowhere got it into their head that they would become shoemakers, because yes, that is what Liliw is famous for, shoes.  Been trying to read up on the history of the place, find out how they got into the shoe industry, but I can’t seem to find online information about how it all started. The information must be in a library somewhere, or maybe I have to do interviews with primary sources out there in Liliw with the shoemakers themselves. Either way, I was wondering about that, who it was that started it all, and how it must be a fascinating tale.

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Giant sandals on display outside a Liliw shoe store.

Anyway, a trip to this far off town is every shoe loving woman’s fantasy. Rows and rows of handmade shoes at affordable prices. I went crazy there and my husband bought himself a couple of topsiders as well. But it’s the setting really, this small town so far away with a main street full of shoe stores, that charms visitors. Old Spanish and American era houses, some of them had shoe stores downstairs, others turned into restaurants or what not. They have a big red brick church dedicated to St John the Baptist and if you want to stay more than a day, they have spring resorts along the river at the foot of the mountain where the water is said to be ice cold. Walking around, you almost wish it were your hometown as well.

The best part of the trip was lunch. We discovered this Italian restaurant beneath an ancestral house near the main street. It’s called the Arabela Restaurant, apparently a famous resto (by the amount of blogs I saw written about the place), run by a family that used to be a part of the shoe industry in Liliw. The food selection and the desserts surprised me. It was just as good as any of the high end restaurants in Manila, very urbane, but tucked out there in that small provincial town. The tourists keep the place up and running all day. It was a wonderful discovery — this quaint restaurant in this small town. I was enchanted and wouldn’t mind going back there if only for the Arabela.

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Beautiful dessert at Arabela

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Great ambience too!

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I ordered one of their pasta bestsellers.

After lunch we went back to shoe shopping and I remember quietly walking around and ending up in this outdated showroom manned by this old man in his shorts and sando. He was leaning on his walking stick and fanning himself with an abanico. There was one girl with him there that stood by the customer and he kept quiet and seemed severe. Then I don’t know why but he suddenly opened up and started to make small talk with me, asked me where I was from and he seemed to know my town as well and we went back and forth that way. I wasn’t planning on buying anything there, but that old man made me change my mind and I chose two walking shoes from his store. I kind of pitied him, the place was dark and old and despite all the tourists out in the street, I was his only customer that afternoon.

When we got home and I was looking through my loot, I remembered that old man and thought about him, so old in that hot afternoon, waiting for buyers and sometimes talking to them. I wondered what he thought of his life. I’ve been testing the shoes (believe me I bought many) and although all of them looked nice, the real test was in the wearing and since these were handmade shoes, some were better than the others and I realized that the cheap prices meant the quality of the shoes weren’t always consistent. But those simple walking shoes from that old man were the softest and most comfortable so far. And I wondered about him again, that hard old man with the softest shoes.

It was the perfect day trip. I have been forced to stay indoors for most of the summer this year because the wolf has been acting up but this — a spur of the moment visit to a place like Liliw — made me forget lupus, if only for just a day.

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Feeling Imeldific with our loot.

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Happiness on this perfect day.

When my father died

I saw him die. We all did. We were there in the ICU as they were trying to resuscitate him and they were about to intubate my father when my brother signaled to the other doctor to stop. And slowly the numbers on the machines turned red and alarms started but my brother turned off the sound and then everything turned into zeroes and then my kuya turned toward me and my mother, broke down and hugged us saying, “let him rest, let Tatay rest now.” We all cried then but I was all cried out, been crying all day for the past two days by then. I looked toward my father and saw the pain on his face, how death had distorted his jaws and his face looked disfigured. He was still warm but gone to sleep forever. They don’t tell you about that. That it’s painful and it will show in your body and in your face when you go.

Afterwards, after the priest came, after the doctors have talked and signed and patted our backs, it was just me with him, watching over as the nurses cleaned him. It was just me with him before he died as well, only one was allowed to watch over in the ICU. It was me, it was always meant to be me. I was his favorite and he was my daddy. I left the movement and took over the family business when he could no longer keep it together, I kept things going and saved the house and the press from foreclosure. He was already sick with cirrhosis then but not yet the cancer. I got married, started a family and took care of them. Things seemed ok, we were happy despite the sickness and the financial problems his gambling brought us, and then the cancer came and it was a year of that. Of cancer. Then he died.

I remember that last night, I sat by his side and said my mantras, my prayers, my calls to heaven. I didn’t really know what to do. Only that everybody else has said their last goodbyes and they were all asleep, exhausted by grief, but I was still awake and it was just me and him and I didn’t know what to do. I ended up singing to him. This beautiful ethereal church song we used to sing during holy mass when I was a school girl with the nuns, it’s called “Anima Christi.” I sang that to him, like a lullaby, I knew he must have been tired as well and scared and unable to wake or talk or say goodbye. It was my way of saying goodbye and goodnight. I remember a nurse coming in while I was singing that but my eyes were closed and I didn’t stop, I ignored whoever it was who came in and continued singing. I felt a hand at my shoulder, a gentle squeeze and then we were alone again. When I finished the song, I kissed my father on the forehead and sat down on a lazy boy chair near the wall and fell asleep. Four am I woke up to the sound of people, nurses and a doctor being all hurried and frantic. I stood up and in a panicked voice asked the doctor, what’s happening? He’s crashing. What should I do? Should I call my kuya? He looked at me, hesitant at first, then said yes, I think you better call Dr. Dela Pena and the family now. And I knew it right at that moment that it has come. It was happening. Tatay was dying now.

I remember the trees out of his window that morning, how beautiful they were as they swayed in the wind. It was a bright day, a beautiful day I’d call it. I always notice different hues of yellow in sunshine, how sepia afternoons remind me of my childhood home; how the blindingly bright sun of our summers made me think of swimming trips and watermelons, of barbeques and children playing in the street. The sunshine that morning of my father’s death was bright and windy. It was a January morning, bright and cool and full of promise. But right then, I wondered how could I even notice this beauty when I just lost my father.

I seemed calm all throughout in the hospital on the way home. We went straight to the mortuary and the family discussed his funeral service with them and then we went home to rest and wait until the body was ready for the viewing in the evening when we start his weeklong wake. I remember looking at him in the morgue, how I disliked the white tiles in that room, how hard and cold that room felt. I didn’t like that room at all. They asked if a family member would stay to watch over the embalming and we all refused. We were looking over coffins and my brother chose an expensive white one for him. I went out and wanted to go home, I couldn’t stand another minute in that place.

I remember going home, entering the house and being met at the door by Jackie, our secretary, we hugged and cried. Somehow I just couldn’t stop then. I looked over at tatay’s bed and his pillows and something in me snapped. I went to his room and looked over his desk, his medicines and syringes and I couldn’t stop. Then I opened his closet and saw the rows of polo shirts my tatay kept and collected, the smell of them, of him. Something snapped and I remember this deep howling sound of grief from somewhere and it was me, and I was on the floor, bereft and without reason or shame or any thought left in me, I wept. I wept for all the things I could not say to him. All those months of staying strong and being positive and being a good caregiver. Of keeping it in and not showing him how scared and sad and awful I felt to see him in pain and dying and dead. I must have gone mad then but they didn’t tell me.

Months afterward, I remember one night, we were driving home and I was in the passenger seat looking out on a clear night sky and seeing the stars. I wondered then where my tatay was, if he was still out there in this universe, existing someplace else. And I realized, with sudden clarity, that I have lost the certainty that someone out there loves me completely, unconditionally. I was so well loved. I grew up with that security and it made me strong and confident and proud. But the person who gave me that strength is gone forever and I cried again when I realized that. At that moment, I felt truly alone. I had my husband and my son and my mother and siblings but it didn’t make me feel any better. He is gone and the world is a different place now.

Nine years together

Today is our ninth wedding anniversary but I am already excited about what we will do for our tenth year celebration.  I have this notion that I want to get married again.  Do the whole thing all over again.  Here in the Philippines, people usually do that for their 25th year (the silver wedding anniversary) or their 60th year (the golden wedding anniversary).  But since I have lupus, I have decided I don’t want to wait that long. It seems an extravagant silly thing to want to do, but clearly I am not being rational here.  I love celebrations.  I have recently thrown a lavish baptismal party for my baby and last year was my eldest boy’s seventh birthday and we pulled out all the stops for that party, even capping it off with a grand fireworks display that had our guests talking a week after the party.  Yes, I am that person.  I have party pinterest boards.

But this isn’t a post about my obsession with grand parties and celebrations.  This is about me and Ruel, my dearest other half, and my amazement at the thought that it has been almost ten years of marriage.  It feels like only yesterday when we started it all.

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When I fell in love with Ruel, I didn’t think then that this was going to be the greatest love of my life, that he would become the father of my children.  Only that I had a lot of fun with him and I liked the way he made me feel.  I never thought far ahead into the relationship but he clearly had other ideas.

Looking back, we have had our ups and downs, and there were times when I felt like I hated him, when I felt like giving up on us but it’s true what they say, there are good years and bad years in a relationship.  Thankfully the past couple of years, despite the different problems that have beset us, have been good years.  I look at my husband sometimes when he is asleep and think to myself how lucky I am to have found such a good man, kind and understanding and really open minded about a lot of things. Kindness is underrated. People don’t seem to care much about kindness but at the end of the day, it is the most important trait of all. I married a kind man. I don’t think I am kind, not really, I am more wary and hard but maybe we balance each other out that way.

Our relationship has always been light and after almost ten years together he can still make me laugh.  The belly laughs that have marked our relationship from the start.  I still look forward to our daily chats in the office or over dinner, listening to his gossip and laughing about random things together.  It is always great to know that you ended up with your best friend.

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When my nightmares come, I have him and the comfort of knowing I am safe with this kind man, the one I love. I feel at peace with him beside me. Sometimes this very same feeling scares me, where would I be and what would I become without this peace? Without him? I don’t know. Right now I am too scared to find out but I guess that’s what love is no? That scary kind of surrender. Perhaps I should have done things differently, but it’s been nine years and two kids and it’s too late.

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The other day, I was looking over some files in the office and I found an old copy of our misalette when we got married.  We wrote messages in this little booklet and below is my message, shared here in my blog for posterity and for our boys to read someday.

A message from the Bride

16 April 2005

 

“Sa totoo lang, nahihiya akong magpapakasal ako.  Not because I am ashamed of the man I love but as most people who know me will attest, marriage and love are just not the type of things I would normally do.  Where I come from, it’s just not the cool thing to do.  Well, at least not the type with gowns and doves and all that silly stuff associated with traditional weddings.  But what can I say—bumigay ang lola nyo.

So now, I find myself writing this and struggling to explain myself.  But there is no explanation.  I fell in love and despite all the failed marriages and unhappy couples I’ve seen, I have decided to take the plunge myself.  To all my friends (and enemies) isa lang ang masasabi ko, wish me luck.

I sure as heck need it.  You see we are not the ideal couple, we come from different worlds, we are not the best looking people around and not a lot of people were all that happy about this (mis)match.  But none of that matters because those who truly care for us will know that despite all the troubles we have gone through, the weaknesses we have shown, this is a love that from the beginning has fought for its existence and will struggle to the end.

For those of you who are totally against this marriage, who have used this wedding as fodder for gossip and intrigue, those who have doomed our love from the start, god bless you all.  Life wouldn’t be half as interesting without you people.  And for those who are truly happy for us, thank you.

Thank you so much for the acceptance, the understanding, and yes, the love.”

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Our wedding missalette and souvenir program

I am basking, nay, gloating in the thought that the relatives and people who doomed us when we started must be feeling sheepish right about now.  We certainly had a lot of great fun in the past nine years proving the haters wrong.

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Bambam’s post birthday Birthday Bash at the Crimson Hotel in Alabang

While recuperating from my recent lupus episodes I wanted to write about happy things and I thought I might post about my baby’s birthday party last September. 🙂

Bambam’s birthday party actually happened a month after his real birthday.  When he was hospitalized I was forced to cancel his birthday dinner a few days before the event.  Good thing I didn’t plan on a grand birthday party, cancellation of which would have been disastrously costly since suppliers do not give refunds for such occurrences.  I was just fresh from the madness of planning my eldest son’s 7th birthday party, an over the top grand affair complete with swimming and clowns and fireworks (post about this party to come later) and I didn’t want to stress over another party.  I figured that except for pictures, my baby would hardly remember his first birthday and there was no need to make it costly or stressful.  I opted for something simple but elegant and I wanted wonderful pictures of his first birthday.

_DSC9751Our red themed group picture at the Crimson Hotel’s elegant lobby

 I thought a family dinner at a beautiful new hotel in Alabang called the Crimson Hotel would be the perfect venue for our party.  We’d check in overnight and dress up for dinner at the hotel’s buffet restaurant, Café 8.

We had our resident photographer, my best friend Bogart, take care of the photos for the event.  We decide red would be a good theme for our “dress up” party since it would complement well the rich yellow and gold toned backdrop of the hotel and its beautiful lobby.

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 I chose the Crimson Hotel in Alabang for our party because it is beautiful and brand new and the best part about a newly opened hotel are the promos.  Haha!  I got promo vouchers to this gorgeous new hotel thru Deal grocer a few months before my son’s birthday.  We got a weekend stay promo for two rooms and discount vouchers on their buffet dinner at Café 8.

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 Thankfully, I was easily able to cancel the dinner and room reservations at the hotel with no hassles when my baby was hospitalized a few days before his birthday.  We re-scheduled the party a month after, on my own birthday weekend, so it became a two in one affair.

We all had a lot of fun dressing up and us ladies enjoyed getting our hair and make-up done in a nearby salon for the dinner.  Our group had our own photo shoot at the hotel rooms and lobby before and after the dinner.  The hotel’s rich interiors provided the perfect backdrop for an elegant photo shoot, just as I had imagined.

Some of our pre-dinner photo shoot in our rooms

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Tatay Ruel and Kuya Anton looking dapper in their outfits

The buffet dinner wasn’t as big or impressive as other hotel buffets I have been to but considering the promo cost (around P750 per person for a hotel buffet dinner that usually cost around P1,500 per person) and the ample selection of Café 8, it was a memorable dinner for all of us.

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I ordered a really cute jungle themed fondant cake from my trusty cake supplier/home baker, the lovely Jenny Redondo from Batangas (you can find her and her affordable fondant cakes in facebook under the name choco loco).

The intricately made cake was perfect for our elegant little affair.  Our baby loved it and he promptly picked out a jungle animal to nibble on while we were setting up the candles for the cake.

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 I still had the party hats and the balloon bouquet we bought for Bambam’s birthday at the hospital and we brought that with us to the hotel. We then blew up some balloons on sticks and with permission from the restaurant staff, we set up our table at the Café 8 for my baby’s party.  It was beautiful!

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Despite everything, the lack of money and all the stress and health challenges we faced during the past months, I was very happy we were still able to pull off a simple but memorable party for my baby.  I was able to achieve my goal of lovely pictures for my son.

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Kuya Anton looking so guapo with his red bow tie

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Beautiful and happy smiles from Bambam and his Godmother Jackie

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The day after, with me frowning over my 35th birthday cake. 🙂

Lupus Episodes

Most days I feel fine, a bit worse for wear sometimes but I have gotten used to the limits lupus has imposed on my life.

But there are days when I am acutely aware that I have this awful disease that simply won’t go away. I don’t know why but this past week I had a couple of what I call my lupus episodes.

The other night, while watching TV in our room with my older son, I suddenly felt a panic attack coming on. I couldn’t breathe and felt like I was going to faint. I told my boy to call his dad and good thing my husband knew where I kept my bottle of rivotril for such emergencies and after an hour of shallow breathing. Things went back to normal and I was able to sleep well. The next day was my baby’s Moving Up Day at ¬his playschool and I was still able to attend the morning ceremonies for that but when we got home I was exhausted and spent the whole afternoon in bed.

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Bambam looking handsome at his playschool’s Moving Up ceremonies

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He got “The Most Patient Award” which we found funny since it should be his nanny Ate Ambal who should receive this award from the playschool.

Yesterday on the other hand was my eldest boy’s annual school play. His school has this thing every year where they throw a grand theatrical production for the kids, as in they choose big world class venues (this year it was at the GSIS Theater at the CCP Complex), with wonderful costumes and set designs and all the kids participate, even the full orchestra performers are all students. It’s a great tradition and it speaks a lot about how the school takes the arts seriously.

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Anton in “The Lion King”

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Posing on stage with his friend Ralph after the play.

Anyway, this grand event was a full day affair and the summer heat and sun exposure (I forgot my umbrella!) took its toll on me. By the time we went home at around 8pm, I was feeling one of those bone tired fatigue moments that I know is a sign that lupus is on the attack. I told myself to calm down and that a good night’s rest will make me feel better the next day. On the way up the stairs to our house my legs gave in and for a moment I blacked out. I felt myself drifting off and feeling very dizzy. It took a while for me to realize that I was unable to stand, that my legs were shaking and that my head was spinning. My mother and my husband got me downstairs to the office sofa and I lay down there for an hour before we decided I had enough strength to go upstairs to our house.

Hay. Even typing this makes me so tired. I don’t know where it comes from. The sudden attacks. Lupus can be so unpredictable and it scares me. One minute I think I’m ok and the next I am down on my knees not knowing who I am or where I’m at.

Mostly I feel very sad that my eldest boy is forced to witness these fainting spells. That he sees me so weak and down. I was lying down last night and I saw him asking my husband if mommy is going to die. It breaks my heart he has to think about these things.

Today was his recognition day at school. I couldn’t go, of course, as I was still too weak to get out of bed from last night’s episode. My husband has work and deliveries to make in a nearby province so he asked my mom to attend the ceremonies instead. My mother came late and as a result my boy went up the stage alone. A friend texted me while I was in bed asking why didn’t you come to school today? Your son was near to tears and he was all alone. I almost cried myself when I read the message.

I have no picture to share for this year’s recognition day with Anton.

I was so angry at my husband for not being there, angry at my mother for being late and mostly angry at myself for being this weak and sickly mother who couldn’t come to her son’s big event because of a lupus episode.

When Anton came home earlier, he came up to me and still hugged me. He said, “Mommy I almost cried coz I was alone up the stage. And we were supposed to give flowers to our mommies but you weren’t there so I just gave it to teacher.”

I hugged him tight and he said, “It’s okay. I forgive you and I’m going to go biking now.” I thank god for children and their resilience. I hope my sons have more patience to deal with this as they grow up.

As for me, I have no choice but to deal with these painful episodes in my lupus life. Will be checked by my rheumatologist on Thursday and find out why the wolf has been acting up this past week.

“Enjoy the little things in life for someday you will realize they were the big things”

My old house circa 2009

I recently pulled up old photos of my house in my computer’s files. These were Christmas photos taken by a good friend’s husband way back in 2009. I realized that this was my Tatay’s last Christmas alive. It made me sad and happy and nostalgic all at the same time.

We haven’t lived in our house since 2011. My old house still stands but since I moved back in with my mother after tatay’s death, it’s no longer the lovely home it once was. It has become a sort of staff house for a couple of people who work for us and also a guest quarters for friends and relatives of my husband who come in from Mindoro. It’s not the same.

I remember when I was diagnosed with lupus last year, one of my first realizations then was that I wanted to move back into our old house. I thought if I was to die soon, I wanted to do it in my own house, where we started our family. Where the happiest memories of our early years together remain.

Alas, a lack of funds due to numerous health and financial challenges has prevented my grand plan to renovate the place (it has become run down) and move back in. But that is one of the things we would want to do once our finances permit the necessary budget. I want to go back home. Where I was happiest.

In the meantime here are pictures of my house in 2009.

 

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It’s a bright and airy apartment with lots of books and a big comfy sectional sofa. There was just three of us in the family plus a single household staff but we had a big wooden dining table good for a dozen people. I love that narra table because my Tatay gave it to me when we got married. I hope to pass it on to one of my sons when the time comes.

 

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The sofa was made to order from a local upholstery craftsman in our village. I showed him a picture of an Ikea sofa with the dimensions and specs. He balked at first and said this sofa is too big! It’s not right, it like a bed, he said and I was laughing and saying, yes, that’s exactly what I want. He looked at me as if to say you’re a weird person who knew nothing of sofas but he followed my instructions to a T and viola! I got myself a great sectional sofa for a fraction of the usual price at the malls. All thanks to Mang Popoy.

 

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It’s very colorful I know. Too much for some folks but it was just what clicked with me. I remember experimenting with throw pillows and I did try to tone it down a bit for my husband but I just wasn’t satisfied unless it was colorful. I just always ended up going back to the fiesta pillows. Later on I justified the whole thing by saying I had a growing child and it was fun for my boy to live in a bright colorful space, but really it was just me.

Later on, before we moved back to my mother’s house, my husband gifted me with a handmade (yes, as in he made it himself) shelf for all the books I couldn’t display because there was not enough space. I chose the color “happy red” for that shelf and it still stands in the old house with all my books.

 

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I really do miss our old house. I remember the quiet mornings we had together, the wonderful weekends when our bonding time was going to the palengke (market) for that Sunday’s lunch (which was usually pork barbeque because my husband liked the whole ritual of smoke and the smell of roasting pork.)

My biggest indulgence then was buying a bunch of Malaysian mums from the palengke to be put in our dining table, my husband thought me crazy, spending precious money on flowers but I told him a good house deserved fresh flowers every weekend. I remember lazy afternoons when my husband and kid would spend hours goofing around in the kiddie pool and I would look on while reading my books.

That was happiness for me. Little things really, but looking back, those seem to be the biggest and most significant moments.

 

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My boys enjoying the kiddie pool

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Always fresh flowers at home

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Missing Christmas in our old home

I still want to go back and fix it up again and move back in with our baby. I want Bambam to have many great memories there as well. Soon, I hope.

 

 

Tatay and Tagkawayan

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It has been four years since Tatay died and I haven’t visited his hometown since the year he left for good but last October, I finally took the trip back home. Back to tatay’s happy place.

We left at the crack of dawn, cooking up a picnic feast the night before in anticipation of a hearty breakfast and lunch on the road.  We had snacks and chips in abundance and CDs of favorite music were chosen to make the drive pleasant for the whole family.  It was a nice sunny day–we were lucky considering all the rain and typhoons of the past month.  We got lost at some point, but quickly found the newly established diversion road in Tiaong, Quezon and it was one of the highlights of that morning drive because the countryside there was spectacular, with rice fields, carabaos and white cranes dotting the landscape.  It was very early in the morning when we drove past that picturesque highway and the sunlight was a light yellow that hit the grass at just the right angle and it made the morning dew shine like tiny jewels by the roadside.  It was beautiful.

When we reached Atimonan, we chose to go up the Quezon National Park, carefully threading the zigzag road of that famous mountain.  The prize at the top was the jungle-like rest stop for travelers.  We decided to have breakfast there.  As you get off the car, you will smell the moss and rotted wood smell that’s peculiar to jungles.  The air up there was cool and clean and it was a blessing to be staying in that well kept mini-park with it’s nipa huts and grotto and man-made pond with colorful campy sculptures of Filipinos fishing around that pond.  They had potted plants and bonsai plants displayed beside the huts, all of them for sale to the tourists.  They also had a restaurant blaring loud music and a sari-sari store selling overpriced coffee and candies.   We had our own packed food though so we hauled out our heavy picnic hamper and started the early morning feast that Ambal and Jackie worked so hard at preparing the night before.   After breakfast, we rested, took some pictures, enjoyed the jungle mountain air a bit more and then went on our way.

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After the mountain comes the ocean.  The highway will wind down to the coastal town of Gumaca and many beach resorts dot this highway.  Years before, when we would make our annual pilgrimage back to Tagkawayan and Naga, we always ended up having lunch or breakfast here at the beach.  We never swam though, Tatay was always in a hurry to get home, but lunch on a beach was one of the treats of the trip, it was one of the signs that there were more good things to come.

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This is the beach resort in Gumaca where we had our lunch during our last trip home with Tatay.

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Nanay and my Tatay goofing around at the beach on our last (and Tatay’s final) trip home to Tagkawayan.

One of my favorite pit stops here is the famous mermaid on the beach.  It’s really just a sculpture of a mermaid perched on a rock by the roadside.  I took a picture of her on the way home on our latest trip.  She’s still there.  Quite old and I’m not sure the local government is doing much to maintain or improve this beloved Quezon landmark but the fact that she still stands mean much to older folk like myself.  Sadly though, my boys were not impressed.

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After Gumaca comes the long hot countryside road leading to Tagkawayan.  This was always the hardest part of the trip for us.  It always felt hot because it was almost always midmorning when we reached the towns after Gumaca– and we were almost always antsy to get to Tagkawayan, impatient and bored with the endless road.  Of course toward the end, when you start hitting the hills and see the views of the Ragay gulf, when you see the citrus trees along the road and the vendors selling the dalandans at dirt cheap prices, we knew we were almost home and everybody would start to get excited.

Then tatay will turn right on that dusty road and we’ll see the tree lined Main Street of Tagkawayan.  We would see the railroad and the familiar station and then stop right in front of that station, at Tito Jun’s (my father’s best friend) house.  We get off the car to cheers and laughter.  A lot of hugs and handshakes and my father’s booming voice signaling how happy he was.

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Tagkawayan’s tree lined main street

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The old train station

Of course now, when we turned toward that road down the main street, I realized we knew no one around.  The house that tatay bought when we were in college and sold soon after I got married is now a Rural Bank.  My eldest boy amazed and confused by the thought that Lolo’s old house is now a bank.

Going toward Tito Jun’s house just made me sadder.  Tito Jun and his wife are long dead, the youngest child that remained in that house a stranger to me.  The busy train station of Tagkawayan was nothing but an abandoned building now.  The trains stopped running a long time ago, the train system a victim of the corrupt and useless government administrations of my country.

We soon left the main street and went to a relatively new beach-side resort on the outskirts of town called the Villa Aseea to spend the night.  The kids loved the pool and the beach at this resort and they had small but air-conditioned beach huts for rent overnight.  The rate was P2,000 per night for the big hut with two double deck beds that could accommodate four to seven people.  The hut was small and dark (since you couldn’t open the windows because of the air-conditioning and no, they didn’t have sealed glass windows to let in the light).  It wasn’t really comfortable for a big group.  This resort is near the beachfront called Mataas na Bato, a special place for my father (and for most Tagkawayenos I believe).  He always told the stories of all the outings he had at the Mataas na Bato beach with friends, how he learned to swim there as a kid and later as a young adult, how that beach was the scene of many of his young life’s hidden pleasures and debaucheries.

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The beach huts at Villa Aseea, Tagkawayan, Quezon

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 Pool at the Villa Aseea Resort in Tagkawayan, Quezon

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Sunset at the Villa Aseea Resort right beside the Mataas na Bato beach.

Before Tatay died, he told us he wanted to be cremated and his ashes strewn out onto Ragay Gulf, where he had his best memories, where he always felt at home.  Mother, of course, refused to honor that wish.  Being deeply Catholic, she felt that burning the remains of her beloved was just too much like the fires of hell for comfort.  So Tatay was buried here in Calamba, in the mausoleum my mother bought in the 80s.  I don’t want to judge or blame my mother for her decisions after Tatay’s death but I realized that a dead person’s wishes are hardly ever honored if it doesn’t fit the interests of the living.  It made me sad.  I always believed the dead and their memory should always be honored. I wonder if my dead wishes will be honored by my children? I wonder if my memory will endure?  But maybe in the end it won’t matter. I’ll be dead after all.

It has been four years since I last visited my father’s hometown, it took me that long to go back and the visit was a literal trip down memory lane, it was also sad and profound.  But I’d like to think that coming back, even though I knew almost no one there anymore (most of my father’s friends are either dead or have moved elsewhere), was my own way of honoring him and his memory.  I may not have been able to defy my mother and bring his ashes home to the waters of his childhood but maybe he’s forgiven me that.

I do know one thing though, I will always go back there.  Take the pilgrimage home for as long as I can.  I imagine him looking down on me, and being quite pleased to know that I go home to honor him and his memory.

 

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Shells Anton collected at Tagkawayan’s beach. 🙂

 

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My nephew JV and my son Anton at the beach in Gumaca (2009).

My little dragon

This was an old note I had written in the hospital when my baby turned one.  I saw it the other day when I was cleaning up the notes from my smartphone and realized I never used it in full.  I am re-posting it if only because it wasn’t just a milestone in my little baby’s life, it was also such a challenging time for our family.  I look back and am thankful he is now happy and safe and healthy.

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30 August 2013

My little dragon turned one yesterday. We call our Bambam the wish that came true.

I found out I was pregnant with Bam at six months. Yes, you read that right, six months. Three negative pregnancy tests convinced me that the lump in my belly was cancer and I went to a fertility specialist with two problems: first that I wanted a baby and second that I think something’s wrong with my body because I stopped my period months ago but prior tests said negative but I had a nagging feeling I was either pregnant or sick. She promptly put me on a table and did a  scan of my belly.

I will never forget that moment, when she suddenly gasped “Hindi ito bukol! Bata ito!” (“This is not a lump! It’s a baby!”)  Its a funny story I tell my friends but when it happened I burst into tears. It was not funny at all.

I couldn’t forgive myself for not knowing for so long and maybe harming him inside me all that time I didn’t know. I spent the rest of my pregnancy in bed rest. Quietly contemplating how wondrous it was to suddenly have what I wished for and so terribly scared of what lay ahead. My little Viktor was a peaceful baby, didn’t move a lot, seemed a rather lazy kid, I imagined him languorously swimming in my tummy. And he turned out to be quite heavy. For a pregnancy I found out late, he had a way of making sure I knew he was there during the final months of my pregnancy.

My bunso came sooner than expected. I was due early September but he was in a hurry and I went into labor on the 29th of August last year. I was scared of a great many things when I was giving birth to him but seeing him for the first time, this beautiful quiet little miracle, is one of the highlights of my life. I still look back on his first month as our magical time together.

Then exactly on his first month (and my 34th birthday), my little dragon encountered the first great struggle of his young life. A wheezing in his chest I had checked with his pediatrician that morning turned out to be pneumonia. That pneumonia was later complicated by sepsis from staph infection supposedly gotten from my own wounds from the ceasarean birth. Baby Viktor stayed for eighteen days at the hospital.

I have gone through many things, but this one, almost loosing my kid, broke me and made me realize some things are just too much for even the strongest person.

This time, it was my husband who became the strong one. He told me something simple enough, he said “this will pass and we will be happy again”. I held on to that, his words the buoy that kept me afloat during that storm.

And now my bunso has turned one. Facing another storm in his young life. My boy spent his first birthday in the hospital.

We just got out of the hospital last week, thinking he successfully overcame another bout with pneumonia. Then Monday night he had difficulty breathing and here we are again. Combine the multiple hospitalizations of my family (including my husband who was admitted in the hospital last July for a viral infection) with the fact that I was diagnosed with lupus a few months ago, and I am positively feeling biblical nowadays, thinking to myself, now I know how Job must have felt when God threw everything his way. But that’s just me being dramatic. I admit I’ve been crying a lot these past few months, but I suppose that’s good for my tear ducts and a whole lot better than not being able to cry anymore.

I have no grand realizations, no “aha!” moment in the midst of all the bad luck that has been coming our way. Only a quiet acknowledgement that I must be stronger than I think. That despite all the bad luck, I am luckier than most– that we have the means to avail of medical services not available to a good many others, including doctor relatives who are managing and monitoring my son’s case; that despite the challenges, our family has more good days than bad. And most of all, I realize that I am very lucky to have kept many good friends and family who have shown us much love and support.

Last night my friends and family came together in an unexpected way. A good friend, estranged for almost a year, told me she will be arriving with a rainbow cake and we’ll have balloons and banners for my boy. She even made a balloon themed photo collage of my son’s pics she grabbed from facebook. I burst into tears when I saw what she did to try to make my boy’s birthday festive despite the sad situation.

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When we were admitted again to the hospital. I cancelled on the birthday cake I ordered for him and said we will just reschedule his birthday dinner when he gets better. But he got four different cakes last night. from one guest after another. And he had a fascinating and pretty rainbow cake that despite his weakness, he was still able to mash up and made all of us happy.

Bambam cake mash up

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Ninongs and ninangs of our baby came to celebrate with us including a couple I haven’t seen in ages.

My little dragon, the wish that came true, turned one yesterday.

One day I will tell Viktor how we spent his first birthday and  I will tell him how our family and our friends showed us what kindness and love can do to heal even the most battered hearts. Giving strength and hope in a time of sadness and uncertainty.

I will tell him the story of a brave boy, who’s had a difficult time right from the very start but who seems to bounce back fighting every time.

When he grows up, my frail little dragon will take wing and he will breathe fire.

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Top ten things we did in Singapore

1. Universal Studios Singapore.
I haven’t been to a world class theme park in more than ten years (last time was Disneyland in LA way back in 2000 when I was still a college student) so everything was fresh and fun especially since I was enjoying all this with my kids this time around. The lines are long though and the food horrendously expensive. If you can afford it, take the Universal Express Pass as it can take more than an hour of queuing for popular rides even on a weekday and you might just end up wasting your day in long lines.

ImageOne of the most popular rides on USS is the Transformers.

2. Luge and Skyride at Sentosa.
This is by far my eldest boy’s favorite ride in Sentosa Island. The downhill drive on the luge was exhilarating and the skyride to go back to the top of the hill was a bit scary at first but the views were great.

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My eldest boy excited and scared on the Luge Skyride

3. Siloso Beach at Sentosa.

I have this awful bias when it comes to beaches, after all we have some of the best beaches in the Philippines so I wasn’t all that interested in seeing the beaches of Sentosa Island but I surprised myself and enjoyed it a lot actually.  It was very clean and there were no crowds and to be honest, being a natural beach bum, I could have stayed there all week. Hehe.

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ImageOur baby enjoying the clean sand in Siloso Beach.

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4. Songs of the Sea show

This show was a revelation.  It lasted just a little over thirty minutes with a mythical story of a princess of the sea trying to break free from a curse with the help of the beautiful songs of a mortal man.  It was set on Siloso Beach with gigantic water fountains that danced to music and great big fans of water projected with the animated characters’ images.  There were gusts of fire and water and fireworks at the end of the show.  My boy was awestruck and my husband said it was worth the expense and he remembers this show as one of the highlights of our trip.

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5. Walk to the Merlion Park and dessert at the historic Fullerton Hotel.

The Merlion is the mythical symbol of Singapore, a creature with the head of a Lion and the body of a fish.  If visiting Singapore for the first time, a picture of you with the original Merlion at Fullerton Road should be top priority on your trip.  We did the whole walking tour to the Merlion Park and then we had desserts at the lobby café of the historical Fullerton Hotel just across the Merlion Park.

ImageMy boy’s fun shot at the Merlion Park

ImageAt the beautiful Fullerton Hotel’s cafe.

6. Gardens by the Bay at Marina Bay.

Another must see in Singapore, the Gardens by the Bay’s iconic tree sculptures that looked like something not-of-this-world (or out of the movie Avatar) are a great photo op for visitors.  Many areas of the gardens are free but if you have extra cash you can enter the two big domes/greenhouses in the gardens for a fee.  I didn’t really want to spend extra but my brother insisted and I must say, I’m glad I relented.   What struck me when we entered the domes was that it was air-conditioned, a relief and a pleasure in a hot and humid place like Singapore.  I honestly expected the greenhouse to be hot, as is everything else in a tropical country, but the fact that it wasn’t made it a cool haven of peace.  I loved it.  I could have stayed all day but it we were sightseeing tourists so everybody else was anxious to be ticking attractions off the “must see” list and we left the gardens before I was ready.

ImageAt the Flower Dome of the Gardens by the Bay

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Outside the Gardens on the way to the Marina Sands Hotel

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Me and my mother with the otherworldly tree-like structures in the background.

7. The view on top of the Marina Bay Sands Hotel.
Tourists visiting Singapore usually have their pictures taken with the Marina Bay Sands in the background and of course, either you go up the Hotel or the Singapore Flyer for a great view of the city.  We opted for the Hotel and it was a great view indeed.  A warning though, like everything else in Singapore, going up the view deck doesn’t come cheap and once you’re up there, there really isn’t much to do except look at the view.  Bring a jacket or sweater if you want to stay up there for longer as it is windy and cold at night.  And yes, do stay for longer, it would be such a waste to spend all that money on the view and just end up taking pictures and leaving after a few minutes.

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8. Shopping in Chinatown. 

This was everyone’s favorite of course.  My mother was astounded there were cheap souvenirs to be found in oh-so-expensive Singapore and we all went crazy buying knick knacks like t-shirts, keychains and ref magnets for our staff at home.  There were also very affordable clothes but the choices were mostly for women.  Chinatown was very crowded but that was mostly because it was almost Chinese New Year when we went there.  This Chinatown is very picturesque with colorful neo-colonial shop houses lining the streets and really nice temples along the roads.  After shopping we went to a hawker center for dinner. Yum.

ImageAt Chinatown.

9. Eating Chicken Rice.
We all fell in love with Chicken Rice.  Also known as Hainanese chicken rice, this dish is often considered as Singapore’s national dish.  It’s a simple meal composed of boiled (blanched or steamed?) chicken with really flavorful and fragrant rice and a side dish of greens (baby bokchoy with light soy) and chicken broth.   The rice was a revelation.  We thought at first it was just plain old rice but it had its own chickeny  flavor and we found out it was cooked in chicken stock with pandan leaves. Ahhh, I could live on that rice alone for days.  A simple dish like this is not so simple at all because apparently, it takes many hours and a lot of effort on the part of the cook to compose this meal.  Having read up on how chicken rice is cooked actually made me appreciate this dish more.

We stayed in Singapore for around eight days and we ate chicken rice maybe half that time.  On the way home, at the airport, I still ordered Chicken Rice at the food court.  Everybody was laughing at me, saying I just couldn’t let go of that dish.  I miss chicken rice already.

10. Singapore’s Changi Airport.

Well they say it’s the best airport in the world.  Having been there, I must agree with everybody else.  It is the best.

I love airports.  Have always loved them since I was a kid and this one, the Changi Airport, is a kid’s dream come true.  They have this giant slide at terminal 3 that’s four storeys high and a family play area and an entertainment section where you can play games, an area where people can watch movies, a spa if you want a shower or a massage, a quiet area where people in transit can sleep.  It has gardens with fresh orchids where people have their pictures taken.  It’s a huge mall where rich Asians go crazy over duty free shopping – I could go on and on you know.

We checked in very early for our departure because we wanted to spend time at the airport before leaving.  The three hours was not enough.  Our gate was already open and people were lining up to board the plane but our group was still busy having their pictures taken in the gardens, my husband and eldest boy still doing the coloring activity at the block art section for kids. I had to do my serious “Let’s go guys!” shout to break up everything and have everybody get in line to go back home.  It would be funny if we weren’t all so sad to leave that happy place.

ImageMy boys enjoyed hours of fun at the Family Zone of the Changi Airport.

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Everybody busy with the art activities at Changi Airport right before our flight.

Pushing my limits: Lupus lessons learned while traveling in Singapore

I just got home from a vacation with my family in Singapore this January.  This is my first trip abroad since being diagnosed with lupus and it has been exactly one year since my diagnosis.  We were all excited and apprehensive about this trip as this would be the litmus test for me and traveling with lupus.

I am now back home and seem to be fine so far, but I still haven’t gone back to my doctor, haven’t had my laboratory tests taken, so I’m not quite sure what the tests will say about my travels abroad.

To begin with, my doctor seemed discouraging about this trip.  When I told him about it, he had this “Hay, there’s nothing I can do about it” exasperated air about him which I chose to ignore, of course.  The thing is, prior to the trip, my semi-annual check-up and lab tests last December showed that my ESR (indicator of lupus inflammation) was quite high, around 57 (maximum ESR count for a normal person should be just around 20, so a 57 is alarming no?).  And he said that was a pre-lupus flare figure so he put me on prednisone last December.  He said it’s the lowest dose, 5mg daily, and it should help put out any fires.  I told him I was busy with Yolanda relief operations and was also in full holiday mode so maybe I was pushing myself a bit.  I promised to take it easy but was not able to keep that promise because my brother came home and we became busy with preps for my mom’s 67th birthday.  And then we went to Singapore (insert sheepish smile here).

I loved the vacation, I really did.  But I must also admit that it almost broke me.  All the walking and sightseeing had me achy and feverish by the time we got back home.  It took me a week of lying around in bed to start feeling close to normal.  All the time I was praying I won’t go into some awful flare that would land me in the hospital.  I’m still here, writing this post, so that should be a good sign, right?

Anyway, here are my lessons learned from this first trip abroad as a lupie:

  1. When going to theme parks, rent a wheel chair.  Don’t be shy about it and don’t think people will look at you strange (as I myself feared when we went to the Universal Studios Singapore).  It will help you through a day of walking and a great big PLUS of riding wheelchairs is that you skip long lines.  Hehe.
  2. Pace yourself.  Our group was comprised of one lupie, one senior citizen and a couple of kids along with the others.  We didn’t force ourselves into strict itinerary schedules because we honestly could not do the normal jam-packed tours families do to maximize their vacations.  True, we missed out on some sights like the Legoland Malaysia and the Singapore Zoo but I don’t regret our pacing, if we had pushed it further perhaps I wouldn’t be writing this now. I’d be writing it way later.  After a lupus flare.
  3. Don’t forget your sunblock and your UV protect umbrella.  I didn’t forget the sunblock but I forgot my umbrella, hence an expensive Universal Studios umbrella purchase on the second day of our vacation.  Oh well, it’s a souvenir, I say to myself.
  4. If you can afford it, get a hop on/hop off bus tour or a guided tour or take a cab.  We did a lot of subway rides and walking to and from stations.  By the fourth day, me and my mother were feeling the pain.  I could barely get up in the mornings and my mom got blisters in her feet.  We started taking cabs toward the end of the vacation.  The cabs were pretty expensive and I realized we could have saved more (money and energy) if we just bought the hop on/hop off tour bus passes (those red double deck buses that ply Singapore) or if we paid for tours (the kind that picks you up and drops you off at your hotel.)  Next time maybe.
  5. Again, if you can afford it, stay at hotels with central or easy access locations as this will help save you time and energy.  My brother was kind enough to book rooms at the Hard Rock Hotel in Resorts World Sentosa which was around five minutes away from the Universal Studios, a nearby mall and the Sentosa train station.  Our next hotel was the Swissotel Stamford which was right smack in the middle of Singapore’s central district.  It was a couple of minutes away from another mall and under it was a green/red line train station that connected to the airport.
  6. This should be a no brainer but please, please don’t forget your medications and supplements and other lupie paraphernalia.  And don’t forget to bring along your prescriptions just in case you lose them or something.
  7. Keep your documents in order.  We had a lost passport scare in the middle of our vacation.  I couldn’t find my eldest boy’s passport in my bag when we left the first hotel and I spent the whole morning making calls to all sorts of offices and wringing my hands in despair. As we searched and re-searched our bags, we finally decided to go into my brother’s luggage and lo and behold, my kid’s passport was in his travel documents.  I burst into tears and was hysterical for around 15 minutes after we found it.  Everybody was laughing at me for being such a cry baby.  Funny thing is I was calm throughout the ordeal and it was only when we found the passport that I burst into tears.  Yeah, I was that close to losing it.  My goodness. I was totally unprepared for that.  And in all my years of travel (believe me we’ve done the US and Canada, Japan, Hong Kong and Europe and China and the Trans-Siberian railway to Russia…) this has never happened to me.  I was always in charge, take charge, I took care of itineraries and was a whiz at maps and directions – I never get lost, in any place, anywhere.  But this trip made me realize how forgetful I have gotten with lupus and how I should now be extra careful with everything.  That I may never travel the same way ever again and I have to let go of the reigns some more and entrust things to other people who are less forgetful.

Oh but I loved it. Every minute of it.  Despite the morning aches and pain, the stress and the bedridden days after all of it.  I still have the travel bug.  You feel so much alive out there, seeing something for the first time, trying something new, doing something different.  It never gets old.  And as long as my body will let me, as long as I can still afford to do it (or as long as my brother keeps financing our vacations, hehe), I will still travel despite what my doctor tells me.  Despite lupus. 🙂

Below are some of our vacation pictures.

ImageAt the Sentosa Island’s Merlion

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The Marina Bay Sands view

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One of my not-so-photogenic shots with my wheel chair and umbrella.

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In this picture my brother ordered me to get off the wheelchair and get rid of the umbrella. 🙂

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At the Marina Bay Sands Skywalk

Yolanda

***This is late I know.  I wrote this over two months ago but was too distressed to post this after this tragedy.

We are a country of storms, we hurdle typhoons of varying degrees of strength all year, every year.  Ask a Filipino, any Filipino, and each one will have their own flood story or typhoon story of disaster and survival.  But more than a week ago, one of the strongest storms in the history of the planet (yes, it is that strong), a typhoon named Haiyan (we called it Yolanda here in the Philippines), hit our shores and we are forever changed by this unprecedented calamity.

Thousands dead and many more missing, injured, homeless.  Disaster preparedness did not anticipate the strength of this storm, the whole city of Tacloban in Leyte (where the storm first hit landfall) decimated.  Its local government at a standstill because everybody – local officials, government employees, police and army forces—were victims who are either dead, burying their dead, looking for lost loved ones or scurrying for relief goods and makeshift housing materials to save the survivors and their families.   The national government on the other hand has merited widespread criticism from local and international media alike for the slow pace of relief operations on the ground.  And I don’t think the Aquino government will ever really recover from the disaster that was Yolanda/Haiyan.  People will never forget their incompetence or insensitivity–  President Aquino irritably asking one of the survivors “But you didn’t die, right?” will always haunt him.

I spent the next few weeks after Yolanda organizing a couple of relief operations with my high school classmates for the victims of this storm.  The response to our calls for donations was lightning quick, everybody wanted to help in their own way, and after the initial relief operations, we were even able to organize a second round of donations which were Christmas care packages for children who were survivors of the storm.  Many of our friends gave toys and school supplies and we sent them to organizations who were hard at work sending the goods to the Visayas region.

After that, the mad Christmas rush consumed me. We organized the Christmas party for our small printing press, then Christmas came and my brother came home from Australia and we had a great New Year celebration with him.  Then we organized a grand 67th birthday party for my mom and then after that we went on a weeklong vacation to Singapore with my Aussie-based brother who financed most of the trip.  The past couple of months were hectic to say the least.  But mostly I am left silent by the contradictions that marked this time.

The disaster that rocked our country and resonated with every Filipino, was also a time of celebration and joy and reunions for many other families.  We Filipinos have the longest Christmas season in the world (it starts around September) and we take our Christmas traditions seriously.  Many Filipinos have relatives abroad who come home for reunions and celebrations during this time (such as the case with us, with my Kuya coming home after more than a year of not visiting the Philippines).  I’m not saying many Filipinos were celebrating like hell while a big chunk of the population were in mourning, many of us donated our funds for celebrations to the relief operations.  Other companies cancelled their Christmas parties and gave the party budget for the donations.  People were all sensitive to the tragedy that was Yolanda, but for those of us whose families were still alive and complete, those whose loved ones came home for a reunion, we all felt a need to hug each other a little harder, we all felt the need to celebrate while we still can.  And this feeling, well, it made me feel guilty as well. Because we could still hug our loved ones, because we could still serve Christmas dinner and be happy together.  It felt wrong and it felt right all at the same time.

That’s why I couldn’t write this in the post couple of months.  I didn’t really know what to say or if what I had to say meant anything at all.

But I remember reading the stories of the families shattered by Yolanda, the mother walking the streets like a zombie, her husband and six children all taken by the storm surge.  The man who wrote a note to his brother in Australia, saying both mother and father are dead.  His wife having just given birth, lost her mother and father as well.  I think to myself, how does one go on from there? To have six children and loose them all in one fell swoop?  I cannot.  I cannot imagine it at all.  I could not speak of it. I could not write of it and I’m not sure writing about it now is not just me making my own noises to keep from falling into a void.

I think about them still.  Everyday.

The world can be such a horrible place.  I wake up some mornings when the sun is bright, the trees outside my window dappled in yellow, birds perched and chirping, my children’s laughter a wondrous background to all that beauty and all I feel is dread.  My thoughts filled with the previous night’s terrors. I think of all the things that one stands to lose in this life, and I wonder if we will be spared.

Family Pilgrimage

My father, a Batangueño*, actually grew up in a sleepy town called Tagkawayan in Quezon province near the Bicol region.   He never tired of saying that his best and happiest memories were made in that small, insignificant town on the tip of Camarines Sur.

Image My father (polka dot guy on the left) with his high school buddies in Tagkawayan.

Every year, around September or October, we went home to Tagkawayan and went on pilgrimage to the Miraculous Virgin of Penafrancia in Naga City, Bicol.  I grew up with memories of our annual trip home, riding our old Volkswagen Brazilia through mountains and seaside towns.  Me and my Kuya* would sing “yellow bird” in the backseat of the car and Nanay* and Tatay* would sing along with us.  When we got to Tagkawayan, we would stay at the house of my father’s high school best friend, Tito Jun.  The rest of my tatay’s old gang would converge when we arrived and the seemingly endless drinking and cooking and eating would commence.  I remember reciting poems and singing kindergarten songs on top of tables for these old drunkards, I’d be so happy when they all clapped after my “performances” and I look back remembering how proud my Tatay was of me as a kid.

After the Tagkawayan visit, we would go for another two hour trip to the pilgrimage City of Naga and visit the Virgin of Penafrancia in her Basilica, attending mass and praying to the mahal na ina*.

There is a back story to our family’s devotion to this particular incarnation of the Mother of God.  As the story goes, by the time my mother was pregnant with me, they really wanted to have a baby girl after having two sons.  With that wish in mind, they resolved to go on a pilgrimage to the Virgin of Penafrancia on her feast day (which is held every third week of September), promising the miraculous virgin that if she granted their wish, they will go on pilgrimage to her Basilica in Naga City every year for the rest of their lives.   Well, I was born a week after that pilgrimage, on the 29th of September, and so I grew up going to the Virgin of Penafrancia every year to thank her for making me a girl.

I won’t get into a discussion of whether or not it was even right to make such a wish or if it were indeed a wish granted considering I was conceived a nine months prior to the pilgrimage so my sex was already decided long before they even thought of praying to the Virgin of Penafrancia.  A lot of you would actually say why I should even thank anybody for making me a girl since being a woman in a conservative Catholic third world country was so hard.  Since being the youngest and only girl in the family made me the most powerless member of the group.  But being a woman deserves an altogether different post, and this story isn’t about logic or reason or correct decisions – it’s about my family’s idiosyncratic traditions and myths and this is the most compelling one of all.

Anyway, to get back to my story, because of the wish that came true, our family visited the Lady of Penafrancia every year.  But really, I think that deep down, my Tatay not being very religious to begin with (this was after all a former activist who lived in Moscow at the height of the cold war to study and be among “real” Marxist Leninists), probably thought it was a poetic way of giving reason to his need to go home and touch base with his roots.  My mother, on the other hand, is a deeply Catholic woman and she took this pilgrimage seriously, even saying later on that missed years were bound to be a source of bad luck for the family.

ImageMy father studied for three years under a scholarship in Moscow in the early 70s.

 

Despite how dysfunctional our family was, my childhood was shaped by these yearly visits home.

I mean we were as bad as the worst of them (alcoholic intellectual husband, poorly educated conservative Catholic wife, with a fractured and combative extended family that added to the stress of it all), but these trips home served as a way for us to consolidate.  My parents may be fighting each other for the rest of the year, but on these trips they were both on their best behavior and we were happy, if only for a few days every September.

As the years passed, as we grew up and went to college and later on started our own separate lives, the trips happened less and less and there were years when my Tatay and Nanay took them alone, there were years when there were no trips home at all.   This seems to be a sad fact for all families, traditions let go and family members growing apart.  But when I started my own family, the concept of family traditions started to resonate with me once more, and I wanted to share my own childhood experiences with my husband and son.  When I moved back home and took care of my parents, that’s when we resumed the trips to Tagkawayan and Naga City.

Our last trip with Tatay happened on October of 2009. He was already diagnosed with liver cancer by then and it was a bittersweet event because we all knew it was to be his last trip home.  I remember on the morning we left Tagkawayan en route to Naga City, he had us stop in front of the old railroad station.  He got out of the car and looked at the station with the word “Tagkawayan” written in stone, it was a few minutes before he decided to finally leave, saying wistfully, “I will never see this place again.”

When we arrived at Naga that same day, Tatay was quiet and sad.  He kept to their hotel room and didn’t say much.  We all understood the mood he was in and left him alone.  When we went to the Basilica that night for the mass and the visit to the mahal na ina, he walked around the church, not saying much but looking intently at everything, as if memorizing the place.

We were all silent on the long ten hour ride home the next day.  A few months later tatay died and although I promised to visit Tagkawayan and Naga soon after he died, I never got around to doing it.  It took lupus and me contemplating my own mortality for us to finally decide to make the trip back home.

It has been four years since that last trip, and almost four years since Tatay died.  We went there a couple of weeks ago with my husband, Ruel, driving my brother’s cramped SUV , our two boys in tow, the yaya* Ambal, mom’s manager Jackie and my husband’s assistant, Erwin joining us on that long, winding and bumpy trip to my Tatay’s hometown.

I wasn’t really prepared for this trip but the surprises along the way were all pleasant and the places where we stayed were picturesque and offered a different experience every time.  Our first stop was at a beach resort in Tagkawayan called the Villa Aseea (where we saw a giant sea turtle!), we then stayed at a bed and breakfast called the Fishcove Garden Resort and our last night was spent in the luxurious Avenue Plaza Hotel in Naga.

When I uploaded our pictures in facebook, a friend wrote me that he felt the serenity in those pictures and it was true, if there was one thing that described our return — my own return to my family’s tradition — it was that it was a serene and blessed homecoming.

ImageThe hanging bridge at the Fishcove Bed and Breakfast’s garden

 

ImageFishcove’s nipa hut in the middle of a pond, we had our morning coffee in this wonderful little hut.

 

ImageAfternoon tea at the Avenue Plaza Hotel in Naga City.

 

 

ImageGreat infinity pool at the hotel.

 

We went to mass at the Basilica to pray to the mahal na ina and we were very lucky to be able to join the procession around the church grounds after the mass.  What really amazed me though, was that after the procession, there was also a healing ceremony called the laying of the mantle that was about to take place.  This ceremony has the parish priest, nuns and ministers laying the miraculous mantle of the Virgin of Penafrancia to her devotees as they knelt in front of the church’s altar. It was a wondrous and poetic ceremony.

As we lined up, I had tears in my eyes, thinking how fortuitous that I came here after so many years, with an incurable disease, and I had the dumb luck to join and witness such a ceremony.  To be filled with all the positive energy and love of that healing ceremony was enough to make any sick person feel better.  You need not be a believer to feel good and happy about a ceremony that showed such compassion and kindness.

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After that ceremony I felt peaceful.  I was grateful to the universe for everything, all the good and the bad and all that was to come.  For once after so many months, I lost — even if during just that moment– that nagging sense of dread and fear for what is to come.  I had only this conviction that everything will be all right.

The rest of the trip was spent in a typical manner — swimming at a hotel pool, shopping at the market for souvenirs, eating out to taste the local delicacies.  We drove back happy and energized, listening to our favorite music on the radio and taking whimsical stops at scenic parts of the road, we bought a lot of fresh (and cheap!) seafood at a market on the way home and ate a hearty lunch at a roadside carinderia facing the pacific ocean.

It was perfect.  Just the way I remember every trip home.

 

 

 

* Batangueño- someone who hails from the province of Batangas, Philippines

*Nanay – Filipino/tagalog word for mother

*Tatay – Filipino/tagalong word for father

*Kuya – older brother

* mahal na ina – meaning “beloved mother”

*Yaya – nanny

* carinderia – ubiquitous local Filipino eatery serving rice and viands.

Random thoughts on lupus, Rome, Christmas and going online

When I was first diagnosed with lupus, I spent a lot of time online reading up about the illness and poring through all sorts of blogs (one that I obsessed over was Diary of a Dying Mom by the late Michelle Mayer).  Needless to say, I promptly became so depressed about lupus, autoimmune diseases and all the severe cases of the illness I’ve been reading about online, I was finally told by my family and even my doctors told stay away from the blogs and forums, at least until I calmed down about the whole thing.

Well, anyway, having been forced to stay away from the internet, I then turned to watching all sorts of downloaded television shows my husband procured for me.  I don’t watch TV, it’s not really part of my daily routine but I can honestly say, with no irony whatsoever, that the HBO series Rome saved me from further spiraling into depression.  I spent the rest of December 2012 listless in bed and watching all the episodes of the two seasons of Rome endlessly, repeatedly.  Something about the life struggles of Julius Ceasar and Mark Anthony  – all the blood and sex and death of Ancient Rome– that got me out of myself and had me forget, even for a short while, about lupus.  That time, I had just started taking the anti-malarial plaquenil for my lupus and was told that this drug takes time to kick in (around six months really).  So I rested a lot while dealing with the fatigue, joint pains and the falling hair of lupus (I had my hair cut short since I figured I was going to lose all my hair anyway), waiting for the drug to kick in and trying to avoid being so sad about all the symptoms that did not seem to go away.

ImagePhoto credit: http://upload.wikimedia.org/wikipedia/en/c/cf/Rome_Season_1.jpg

Of course, because I was diagnosed with lupus during the Season of Joy, we ended up having a very quiet Christmas and New Year last year.  I remember watching the lifestyle network and all that frenzy over the holidays and this local celebrity’s wife talking about how she prepares for Christmas and I wondered to myself how would this lady prepare for the holidays if she suddenly found out she had lupus?  Well, lupus was my Scrooge and it said “Bah humbug!” to our Christmas last year.

I love Christmas and I’m one of those people who spend a lot of time and money decorating the house and cooking up feasts for the holidays but this particular holiday was spent in bed, with rheumatism and wrists so painful I couldn’t even brush my teeth without help.  It’s a miracle my husband survived all that brooding and crying and the repeated episodes of Rome.  But survive he/we did.

Image Scenes from our Christmases past 1: Our home made Belen. Depicting the the birth of Christ in a manger. 

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Scenes from our Christmases past 2: Simbang Gabi or traditional Christmas Mass in our house.

Now another Christmas is just around the corner and I’m feeling myself going back to my old self –and my old love for Christmas reviving with renewed fervor.  No, the lupus did not go away, and I am not miraculously in remission—it’s the attitude that has changed drastically.  I feel more deeply the need for my family to celebrate the holidays together in happiness while we still can.  And no, it doesn’t have to be grand and expensive and tiring (like my old Christmas productions!) Just Christmas trimmed down to the bare essentials – good food, happy children with presents around a lighted tree and a family together and thankful.

This picture with my best friend Bogart is a reminder of all the good things about Christmas (circa Yuletide 2009)

I am back online as well (with a new blog and everything!), no longer staying away from the blogs and the forums, having realized that as much as there is a ton of information out there about how awful this disease is, how much of a cruel mystery it really is, I have every obligation to write my own story for the wider community of lupus patients.  To speak about how many more of us are living relatively normal—more or less happy lives—despite lupus and with lupus.

Our sweet surprise

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I call him my little dragon.  The wish that came true.

My second son, Viktor Ludovik, was born on the 29th of August 2012, the year of the dragon.  My husband was born on the same such year, so we have two dragons in the family, I proudly say.

I don’t remember when I started to want a second child, it was an idea that began with wistful thoughts of babies and how it would be nice to have another child.  But it wasn’t a desire we pursued in earnest, thinking if it came then it will.  A couple of years passed and still no new baby.  We started to wonder about ourselves, thinking we’ve become barren or sick.  Wanting a kid became a dull ache, often ignored and overlooked but always a presence between us.   The longing became more pronounced with news from some friends that they were expecting.  I remember distinctly hearing the news that our masseuse, Milyn, was pregnant after almost ten years of not having a kid, and being for the first time aware that I was jealous of her and her new baby.  It would have been so nice to have a kid during the year of the dragon, I thought.

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I started to feel sick with arthritis in December of 2011, I would wake up feeling tired to the bone with joints aching and fingers bloated.  Imagine the most tiring day of your life, for me it was the morning after the Edsa Dos Rally/Uprising (when I went home so painfully tired from walking all the way from UP to Katipunan, down the length of Aurora Boulevard all the way to Cubao then walking that whole way to the Edsa Shrine in Ortigas) and then imagine replicating that pain and tiredness on a typical morning, realizing this is all wrong, to feel so tired and everywhere so painful, when you just woke up.  It was on one of those bad mornings when I realized, deep in my gut, that I was sick and I could not keep ignoring the signs my body were giving me.

I was fortunate my brother, the doctor, came to visit for the holidays that December and he gave me some pills to take for a week and miraculously, the arthritis disappeared. I thought to myself that prednisone was a wonder drug.  But with getting better and being busy, I soon forgot about my aches and pains and got back to work and living.

One thing kept bothering me though, my period, which was always kind of wacky since I gave birth to my first born was late.  Later than it usually is.  I took a pregnancy test, feeling giddy about the thought of having a baby but was disappointed by the negative result.  I forgot about it again until my brother came home that April for a short visit and I told him about my period being (like four months) late and getting a negative on a couple of pregnancy tests I did.  He said if I wasn’t pregnant then something was up with me and I should have myself checked by an ob-gyne and he referred me to one of the best fertility experts in the country, saying if there isn’t anything obviously wrong with me, then I should at least have myself “worked up” and earnestly try having a second baby.

It took me a month before I went to that doctor.  I went there alone, without telling my mother or my husband where I went, pretending I was just off to buy my son school supplies for the start of classes that June.  I don’t know why I kept it secret from them.  Only that I was so scared of finding out something was wrong with me and wanting to keep that knowledge to myself – if it came to that.  I was nervous as hell going to that doctor’s office.  In her cramped waiting room were a couple of women, one pregnant after trying for so long and another whose been trying to have a baby for months under the tutelage of the renowned doctor.  I felt like a misfit then, not really knowing what was up with me.  I went into the clinic and it started as a typical interview about myself and my history.  I told her my menses have been delayed for months but I’ve gotten a couple of negative results spread out over a four month period (I took the tests January and then March).  She moved closer to do an exam of my belly, and with a sudden furrow of her brow, said there was indeed a lump.  The doctor called out to her nurses and had them prepare the ultrasound machine in the other room.  She told me carefully that she’ll be checking the lump she felt and if it was indeed a mass then she might not let me go home and have me admitted to the hospital immediately.  Tears welled up in my eyes.  I thought my worst fears have been confirmed.  I lay down on that cold table and she started to do the scan.  With my heart in my throat I waited for her to say something.  There was a sudden gasp and she blurted out in Filipino, “this is no lump, it’s a baby!”   I sat up and burst into tears.  Oh no, I thought, what have I done! To be pregnant and not know about it.  I was disbelieving for a few seconds but the doctor, her nurse and assistant seemed quite pleased, if a bit exasperated, by the discovery.  They expected a mass, most probably cancer, and when it turned out to be a baby, the situation turned from grim to humorous.

We got back to her desk, her smiling and me crying.  She then started berating me about the stupidity of it all.  Saying, and I remember this clearly, if she were talking to some illiterate provincial lass it would be excusable but the sister of a doctor and a UP alumna…

She seemed happy over all, assuring me she will take care of me.  When I kept crying she asked what was bothering me, I told her I’ve been taking maintenance medications for my migraine.  Then she turned serious again.  She asked about the name of the meds I was taking and then pulled out a thick book, a list-of-drugs kind of book for doctors, and checked out the meds and their properties.  She then told me the meds I was taking were a pregnancy category C.  Meaning there were no studies done on the effects of these drugs on pregnancy and the unborn child and it was generally recommended that one avoid these drugs in case they turn out to have a negative effect on babies.  I kept crying, scared of what I might have done to my six/seven month old baby during all the time I didn’t know about being pregnant.  She reassured me by saying at least it’s not a category X, where it’s definitely confirmed that one took drugs that have a detrimental effect on a pregnancy.  These drugs include oral contraceptives and the derma drug retinol.  With a category C, at least there is still a chance the drugs have no effect on the baby and his development.

For our peace of mind, she ordered a congenital anomaly scan.  This is a more specialized ultrasound scan where a doctor checks all the parts and organs of the baby to see if everything is normal or if there are, well, congenital anomalies in the kid.  I went home from that visit sad and sobered by the sudden discovery of being pregnant for months and not knowing. I called my husband and told him the truth.  That I went to a doctor and found out I was six months pregnant.  I was crying in the hospital’s stairwell when we talked.  Pouring out my fears.  I couldn’t be happy.  I was too scared.

The next day we went back to the hospital for the scan.  A congenital anomaly scan is a tedious, serious procedure.  Through this scan, the doctor pictures and measures different parts of the baby’s body.  Counting fingers and toes, checking head circumference, eyes, nose and lips, checking for a cleft palette.  Then heart, lungs, kidneys, liver.  It goes on and on.  And all throughout the doctor not saying a word, being very quiet and careful.  It was nerve wracking to say the least.  There was a light moment, though, when she asked if we wanted to find out the gender of the baby.  My husband quickly said yes, and delighting (more like gloating) when told it was another boy.  I was more palpably disappointed, always having wanted a girl.  Even with my first born, I wanted a girl. But it wasn’t meant to be and in hindsight, maybe it’s better to have not had a girl, the burden and guilt of thinking I may pass on the lupus to my daughter too much to bear.

Then it was over.  She said we should wait outside while she writes up the report.  To say we were tense is an understatement.  There wasn’t much we could glean from that inscrutable doctor, she’d be good at poker, I thought then.  And so we waited outside, in their nice and modern waiting room with the great view of Alabang and the freezer cold air conditioner.  It didn’t take too long.  Around thirty minutes and they called us up.  This time the doctor had a smile on her face.  A very good sign.  She then told us the scan was normal all throughout.  She explained each and every part of the body she measured and studied and said our baby was perfectly fine, albeit a bit small for his age.  She said I should start eating up for the baby and congratulated us on our new boy.

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With a literal sigh of relief, we could start being happy and excited about the new baby. I remember after that scan we met up with good friends and celebrated dinner at the California Pizza Kitchen in Alabang.  That celebratory dinner was followed by several more dates and events with various friends who were just as happy as we were and who all wanted to find out the weird story of my “late discovery.”

I spent the rest of my pregnancy in bed rest, because I started getting cramps toward my third trimester and we wanted to be extra careful.  But mostIy, I just really wanted to rest and retreat and spend time with the baby.  I remember wanting to keep very still and quiet, thinking I didn’t want to push my luck further.

Around 3am on August 29, 2012 I started having cramps which I thought was diarrhea but at 8am, my doctor confirmed I was in labor and told me we should schedule the ceasarian delivery at lunch that same day.  So we went home excited and happy—this is it! The big day has arrived!  It was a leisurely morning, I had breakfast (knowing I couldn’t eat after surgery) and took a bath, got dressed, went down to the office to discuss some last minute work and ‘to do” lists with my assistant.  Wrote out checks and issued bank withdrawal slips for that week’s salaries for the employees – typical of my everyday dealings— and then with lots of hugs and laughter, we got on to the car and went to the hospital.

Prepping in the ER was spent talking to the nurses and having pictures and our video taken.  I was then wheeled to the delivery room on the second floor of the hospital with my family in tow, a final wave to my husband with his videocam and I was inside the delivery room and into the OR.

Nobody was there except a couple of nurses lazily prepping the room and me in the middle being strapped to the table.  This was to be my second c-section so I knew the drill, I thought I’d be more relaxed this time since the first time was an emergency procedure with doctors and nurses frantic and me panicking but quickly knocked out by the drugs.  I don’t know what happened but something about being alone in that room, quietly observing the medical looking bottles around the area then staring at the big OR lights on the ceiling and finally looking at the numbers on the vital signs machine beside me, made me start to panic and get scared.

It was those numbers on that vital signs machine that got to me I think, I remember staring at a similar machine moments before my father died, watching the numbers go down and then turn blinking red and then become zeroes.  I was looking at my own vital signs wondering why the benadryl hasn’t taken effect and why I was still awake, when it suddenly dawned on me that my blood pressure was up and my heart was beating really fast.  I asked the nurse why I was at a 150/90 bp and why my heart rate was so high and he said/she said I was just probably nervous.  I really felt something was wrong with me, like my heart was going to burst and I suddenly wanted to see my husband, I wanted to stand up and off that steel gurney and get out of the OR and see my husband.  It was an irrational thought and I knew that as soon as I voiced that desire and started to stand up, those nurses would start to panic.  So I then consciously forced myself to calm down, telling myself to take deep breaths, to not panic and focus on my baby.  That I was about to see my baby in a few hours and that was what mattered and not the fear and panic of that empty room.

The long minutes of deep breathing seemed like forever and every time I checked my blood pressure and heart rate, it was still the same.  But I told myself the doctors will soon arrive and I will be fine. Finally the anesthesiologist arrived and I told him I was panicking and he smiled and told me to calm down.  I told him to make me go to sleep because I couldn’t stay awake any longer, that I didn’t want to have him start doing the spinal block on me while I was still awake because the last time I went through that, the feeling of “loosing feeling” and not being able to move the lower half of my body terrified me.  I remember thinking this must be how dying feels, to still be awake and not feel your body.  I didn’t want to feel that terror on top of the panic I was already going through.  And finally, thankfully, everything started to blur and I went blissfully to sleep.

I woke up maybe a couple of hours later, feeling myself being stitched up by a couple of doctors.  I remember feeling my body moving jerkily with the stitches being made.  I remember thinking they were being quite rough with me and feeling like some raw meat.  Then I fell asleep again and woke up in the recovery room, slowly starting to feel my toes and the pain in my body.  I called out to the nurses and later, before being wheeled out to my room, I was given a glimpse of my baby boy.  My little dragon come true.  I smiled and thought to myself, so this is the kid who kept very quiet and still in my belly.  For a newborn he was quite good looking, he had his father’s nose and my eye brows.  That made me very happy.

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To this day, I still don’t know what happened to me in the OR — if it was a panic attack or if I really had a problem with my blood pressure then.  Whatever it was, the birthing turned out well enough but I am left feeling afraid and traumatized by the experience.  I don’t ever want to give birth alone in a room with strangers again.  But since I was recently diagnosed with lupus, I don’t think I will ever get pregnant again.

I have to admit that I will always regret not having a little girl, a daughter was always my dream, and I always thought I would have three kids– two boys and a baby girl.  But some wishes come true and some not granted but no matter, I have two beautiful boys and our family is complete.

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Mild lupus

If you go online and google “mild lupus” chances are you are not going to get far in that search.  Except for some people asking “what is mild lupus?” in some threads and other sites saying lupus can start out mild and over time become worse, there is not much information on the topic.  But I do remember reading a lupus patient in one of those threads who said that you don’t get much information on the milder forms of the disease because those with mild lupus don’t really write about it online, they are out there just being ok, hence the dearth of information on the topic.  And I thought to myself, how so true!  Lupus sounds so terribly depressing online because most of those writing about it are the ones with a severe form of the disease, those with mild lupus are not bothering to tell their stories.  So for people like myself who are newly diagnosed with lupus, it just all seemed like a death sentence of sorts.  But my point here is, it need not feel that way all the time.  There are many out there who are currently living their lives with a milder form of the disease and we don’t always have to feel lost and hopeless and sad.  There are good days that are worth celebrating despite having lupus.

Lupus is called the cruel mystery.  There is no single progression for it and there are as many manifestations of it as there are patients.  It can start out mild and worsen progressively or it can be an acute and severe form of the disease which becomes milder or even goes into remission.  I myself have encountered different versions of lupus ranging from the severe kidney lupus of a close friend’s sister which killed the patient within two months after first exhibiting symptoms of kidney failure and milder forms of the disease, such as another close friend’s mother, who has had the disease for over twenty years and has undergone bouts of severe lupus with a smattering of remission years in between.  My doctor even told me he has a lupus patient in her 70s with no symptoms whatsoever except one – she’s gone completely bald.  She has alopecia (falling hair) from the lupus and that’s it!  So you see, it’s all different and there are no cookie cutter molds for lupus.

I am nearing my first year of having lupus and so far symptoms have been limited to the skin (persistent rashes) and the joints (rheumatism mainly in the wrists and my knees) and I have constant fatigue so I don’t work on our business the same as before.  Aside from the prednisone burst I took November of last year when I was in a lupus flare three months after giving birth to my son, I have had no steroids and am only on plaquenil.  Admittedly, the plaquenil took a few months to take effect but once it did, my hair stopped falling off and my wrists got better (I could write and brush my teeth again with no help!) I still have the fatigue though and my doctor said, the everyday tiredness, the lack of energy, may never go away.  But if my lupus stays the way it is, then I should have a lot to be thankful for.  And I am, I am thankful every day.

I am on a quarterly check up schedule with my rheumatologist, every three months with my lab results in tow (cbc, urinalysis, c3 complement) I visit Dr. Lorenzo at the Asian Hospital in Alabang and so far, for this year, the visits have been uneventful.

I was supposed to go on benlysta but I already told you in a previous post what happened to that benlysta dream of mine so right now I am only on plaquenil, which is pretty good for lupus.  I have a few supplements that my doctors prescribed (Vit. D-3 given by my rheumy to help with the fatigue, multivitamins and fish oil as well as melatonin for sleep because ever since I was diagnosed with lupus, my once fitful sleep went away and hasn’t come back).  And that’s it!

Next on my list are accupuncture sessions and a visit to a famous traditional Chinese herbalist doctor from Ongpin.  I got permission from my rheumy and my kuya for these alternative methods of treatment.  They both basically said the same thing – as long as these alternative meds don’t interfere with my current regimen, then it’s ok.  My rheumy just added that I should tell the TCM doctor from Ongpin not to prescribe herbs with steroids in them because I am currently not taking any steroids.

With regard to exercise, since I have arthritis, my doctor said low impact exercise would be best such as swimming or I can just walk regularly to stay active.  I went further of course and bought promo vouchers to a new yoga studio in Nuvali, Sta Rosa nearby.  I have yet to start on the yoga but that is definitely on the list.

That is the story of my “mild lupus” and I’m sure there are many others out there who are on remission, not even on any meds; or just like myself, with minimal medications and overall A-ok.  I can’t deny that I still have fears about the disease worsening, I still have dreams about protein in my urine and things suddenly turning bad (hence, the insomnia of late). But I can’t live my life being afraid all the time.

I am writing this now because I want other newly diagnosed lupus patients out there to know that there are many versions of lupus and it’s not always so bad all the time.  I don’t want to give false hopes either because I know full well that things can go from “ok” to “really bad” to “dead” with this disease in no time at all.  But only to share with others that this is my story and I am still not sure how it will unfold but I am in the midst of my “good days” now and I am taking full advantage of these days while they last.

First time to travel with lupus

I first started traveling abroad with my family when I was eight years old and my happiest childhood (if not lifetime) memories were of traveling. The best ones were of our first trip to the US where we did a cross country tour from LA to New York then up toward Canada and then back down to Seattle (I was nine years old then), and then when I turned eighteen we did the Tran-Siberian railway trip from Beijing to Moscow and then St. Petersburg down toward Latvia and then back to Hong Kong. 

As I got older and started my own family, traveling took a back seat to other life goals (setting up house, having a baby, starting a business…) and we only started traveling locally as a family when our small business became more stable and profitable.  Our first trip abroad as a family (the first time my husband and first born son went out of the country) was our trip to Europe (Paris then Vienna) to accept our company’s international award for our social responsibility program called the Sinag Journalism Training Seminars.  Our printing press won the Natasa Prize of the World Young Reader Awards 2011 given by the World Association of Newspapers and Publishers (WAN-IFRA) based in Paris, France.  This trip and the award that went with it was a dream come true and I still consider this one of my life’s highlights so far.  A few months after that trip to Europe, I experienced my first bout with rheumatism and a year later I was diagnosed with lupus. 

Being told that I had to stay out of the sun for the rest of my life and that I had to drastically change my lifestyle as a result of the lupus was one of the biggest blows given to me by this disease.  I thought about my love for travel and had this feeling that a significant part of my life would be closed to me forever.  I spent the first few months of 2013 grieving about this but summer came and I had two young sons who, I believe, should experience the joys of travel and summer vacations.  I found promo airline tickets online and soon we were booked for a week on the beaches of Boracay.  I remember going to the doctor shortly before this trip and when I told my rheumy I would be going to the beach, he frowned and said, “What made you think you can go to the beach now?”  I told him I would be staying out of the sun and I just really wanted my sons to enjoy the summer and have good childhood vacation memories with me – despite the lupus.  He grudgingly acknowledged my desire to pursue this vacation and just said I needed to keep slathering on the sun block throughout the vacation and that I had to wear pants and long sleeved shirts while outside (imagine how silly I looked all covered up on the beach) and buy myself some UV protect umbrella (I already have one) and if, god forbid, I wanted to swim on the beach, I could only do so after 6pm and not a minute before.  Haha! He was so worried about me, poor guy, he must have many other hard-headed patients like myself.  My husband was angrier when I told him I already bought plane tickets to the beach without consulting him first (because I knew he would say no!) but he relented eventually and during the vacation itself, was always the one to remind me incessantly about all the little details (“sun block! Umbrella! Ugly shirt! It’s not yet 6pm!”)  We spent six days in Boracay beach, my boys having the time of their life on those powdery white sands.  It was a leisurely trip with no itineraries or island hopping tours scheduled.  I had the freedom to sleep in during the day if I felt too tired, while the family went out on the beach or went shopping around the malls.  Most afternoons I would sit with my umbrella under the trees, buying overpriced mango shakes and enjoy seeing my boys swimming in those world famous crystal blue waters. 

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My boys swimming in Boracay’s world famous beach.

 

ImageEverywhere we went, I always had my UV protect umbrella and never forgot to slather on the sun block lotion!

 

We met up with two other families (old high school buddies of mine) in Boracay and we visited each other’s resorts/hotels, with the kids playing in the sand and us adults waiting for happy hour to start at the bar (I didn’t drink of course, haven’t done alcohol in years but I enjoyed the shakes and food).

When it got dark, we would comb the beach looking for nice restaurants where we could have dinner.  It was a real treat that I also got to catch up and bond with old friends during this vacation plus my eldest boy had his playmates/school mates with him on the beach.

 I was mostly too tired after dinner to join in the bar hopping with my husband and friends but my mom and I spent the whole vacation getting massages before bedtime, so I didn’t mind.  I am one of those people who enjoy a massage more than listening to music and drinking cocktails.  A massage every night sounds over-indulgent I know, but that was the real vacation for me –those heavenly massages before going off to sleep and listening to the nightly rain showers out my window. 

We went home on a big boat (2go ships) going to Batangas pier near our province and this was a welcome new experience for my first born as well (having never traveled on a passenger ship).  He spent the whole day out on the sun deck and playing around the lobby with the family while I slept fitfully in the cabin, only getting up for lunch and snacks).  I rested for a few days after that trip, keeping very quiet and half dreading the travel to the beach might have triggered a lupus flare but I was fine afterwards and was quite happy with how things turned out.

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I could only swim in the beach after 6pm so my friends were only too glad to join me in my own “happy hour.”

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This was our spacial spot on the beach under the trees where we pitched our tent and I sat around with mango shakes.

 

I learned that I could pull off a successful trip to the beach as long as I kept to my doctor’s warnings (two expensive bottles of sun block consumed in that weeklong trip!) and accept that I could never do travel the way I used to do it but that I could do it nevertheless, as long as I kept true to my new limits.  It also helped a lot that I was with a group that accepted and adjusted to these limitations as well.

So that’s the story of my first ever attempt at a beach holiday post lupus diagnosis.  It was a great success and I am looking forward to next year’s beach holiday (this time it will be more fun since my baby will be a toddler then and I assume we’ll be chasing him around the beach for the next vacation).     

Next on our list is a new trip on January — a family trip to Singapore!  My brother will be coming home for the holidays this December and he wanted to go to Singapore with us before returning to Sydney.  I know, I know, you’re thinking I’m pushing my limits here but I think this is a worthy experiment on traveling with lupus (and with kids!)  This will be another weeklong trip and there will be a couple of theme parks on the itinerary.  I will be with another supportive group (with extended family including my mother and her business manager, Jackie, who will help out with taking care of the baby, as well as my husband, our seven year old first born and my brother, who is an ER doctor,  so I feel safer already.)  I have been reading up on traveling with lupus and have discovered that most lupus patients who travel to theme parks actually avail of their wheelchairs for rent so as to save on energy and prevent overtiring themselves on these parks.  I may actually do this but am hesitating somewhat.  Me on a wheelchair isn’t something I am ready to do, I haven’t wrapped myself around the idea just yet but I have a few more months to think about it.  If any of you have any tips or warnings about traveling with lupus, please feel free to write on the comments section of this post.     

My benlysta dream

An incurable autoimmune disease like lupus is always accompanied by feelings of despair and hopelessness.  It doesn’t help that research and a cure seem to be a far off dream, this being a not too well known disease, especially here in the Philippines.  But sometimes, a new discovery, a new drug will spark that sense of hope for the incurable, and you feel an electrifying sense of the possible.  I had a similar moment a few months ago when I was told there is a new revolutionary drug for lupus called benlysta, the first US FDA approved drug for lupus in fifty years, and that it’s finally available here in the Philippines.  Imagine,  the first lupus drug in FIFTY YEARS! Such news kind of makes you giddy if you’re newly diagnosed with this incurable disease. A couple of days after my rheumatologist discussed benlysta with me,  a medical representative from the drug manufacturer calls me up and told me I’m qualified to take the drug and I was so happy about this news, I was practically jumping while we were talking on the phone, I thought to myself perhaps things will be okay for me and this disease.

 And then… and then she drops the bomb on me — it’ll cost me Php150,000 for the first infusion and then it’ll cost me Php60,000 monthly for the rest of my life.  Sigh.

So I was probably too naïve.  To actually believe that things would be that easy – be diagnosed with incurable disease and then– tada!– A revolutionary new drug for said disease available to you.  It was too much to hope for and life just doesn’t work that way.

To illustrate how absurd these prices are for those not from the Philippines, an average Filipino white collar employee may earn from Php8,000 to Php15,000 per month.  If you’re in a managerial position, you may have a monthly salary in the Php20,000-30,000 range  and higher (up to Php100,000 per month in some industries).  But this is being optimistic about salaries in our country, many, if not a majority earn much less.  With these figures, it is obvious the Php60,000.00 monthly cost of benlysta becomes an absurd eye-popping amount for medications.  The government health insurance, Philhealth, does not cover for medications such as benlysta and even employees with private health insurance from their companies would most likely not get approval for benlysta infusions since the average YEARLY medical coverage for an employee provided by corporations is around P100,000.00 Why would they approve medication that costs more than half of the annual coverage to be taken on a monthly basis?  So unless you are a member of the top 50 richest families in the Philippines, benlysta will remain a dream for you.   

I was so frustrated by this discovery that I told the med rep, why’d you invent this drug when clearly the majority of lupus sufferers here cannot afford the sixty thousand per month price tag?  Then they told me I probably can’t even try to get infusions with the help of charity institutions like the Philippine Charity Sweepstakes Office (PCSO) because the drug is so new it doesn’t have government approval for charity cases and it’s not even sold in drugstores or hospitals.

That’s how it is here, either you’re super rich to get treatment or nothing and just pray your disease takes longer to kill you and hope to god you last a few years longer than expected. As it is, aside from my plaquenil, I am now into alternative methods of therapy like accupuncture, traditional chinese medicine and herbal treatments like the guyabano (soursop) leaves that’s all the rage here nowadays. Beats doing nothing and crying over medicines I can’t afford but really, deep down, I just wish we lived in a country that has a better health care system that does not discriminate against the majority who are middle class and poor.  I just wish Filipinos don’t have to spend the rest of their lives feeling helpless and raging over the sorry state of government. 

I haven’t given up though.  I have two kids and giving up and feeling sorry for one’s self is not an option.  I am still in the middle of finding ways and means (and connections) that will let me get help as a charity case (thru the PCSO and similar institutions) for possible benlysta infusions.  Fingers crossed I hope I find a way. 

Also I’m hoping I can connect with other lupus patients so as to not feel so alone about all this.  The only issue is existing support groups I have found online are all Manila or city based, I am from the province of Laguna and I don’t know where to start but that is on my top list of TO Dos – find and join a local support group for lupus patients and if I can’t find one nearby, then find a way to start a group.  I have always believed that there is strength in numbers and one of the reasons I started this blog is because I wanted to NOT feel so alone about this disease.  But the blog is not enough.  Every day I realize I need to do more. 

My lupus story: How I was diagnosed with lupus

I was officially diagnosed with SLE or lupus on December 4, 2012. This was the day when I got the results of my lupus panel tests.  You never forget the day you are diagnosed with lupus.  It is a day that is forever burned into one’s memory.

I remember the long car ride to the hospital that day, how silent we were, how listless I felt.  Not really feeling anything and just looking at the trees outside the window with a wonder I didn’t think possible on that day of all days.

Truth was, deep down, I expected it.  I had a positive ANA with quite a high titer.  And, according to my research, I had the classic symptoms for early onset lupus – joint pains and swelling with fever and persistent rashes all over my body.

But what lead to the lupus diagnosis were a series of (what I then thought were standard) lab tests.  I took the tests upon the prodding of my brother, an internist who is a practicing ER doctor in Australia.  I had just given birth to my second son August of 2012 and we were alarmed that it was already a couple of months after the birthing but my c-section stitches still refused to heal, with wounds that would reappear day by day.   We thought perhaps I had become diabetic.  But early November I became arthritic; I couldn’t stand from the pain and would wake up miserable with swollen hands accompanied by fever.  My brother then texted me a list of lab tests I should have done immediately. One of the many tests he ordered for me was an ANA test (which I found out afterwards is the definitive test for lupus, with 90% of lupus sufferers testing positive for ANA).  I didn’t pay much attention to the tests when I had them done, I thought I had arthritis, yes, but I didn’t take that too seriously.  After the tests were done he referred me to a rheumatologist.  I thought, yes, a rheumatologist handles arthritis, and that was that.  I was busy preparing for my son’s upcoming baptism that December 1st.  I was excitedly looking forward to all the relatives and friends coming in from out of town to attend the event.  I was focused on that and didn’t much care about anything else during that November.

Then came the day to get the lab test results and go to the rheumatologist.  I was so happy that day.  We decided to sneak in a trip to the mall before going to the doctor, I was determined to find the perfect baptismal outfit for my baby boy on that day, and I did– I found the perfect outfit that day.  It was a nice “little prince” kind of onesie with champagne silk shorts and a lace ruffled shirt and a cute little bow tie made of silver cloth.  Oh it was wonderful! I still smile at the memory of finding and buying that outfit for my baby.

Then we went to the doctor.  It felt like a routine visit. I hadn’t done my research on rheumatologists and only assumed I had arthritis and would be prescribed with maintenance medications for that.   After all a year before, around December of 2011, I had a similar arthritis attack but fortunately my brother was on vacation in the Philippines during the holidays and he prescribed me with a drug called prednisone for a week and the damn pain and swelling went away. Just like that!  It felt like a miracle that time because prior to taking those meds I couldn’t stand up and I would cry from the swelling and the pain.

After that episode, I thought to myself well it’s mighty convenient having a doctor in the family and soon forgot about the arthritis and got back to work and my busy life.

It was with that kind of nonchalance that I entered the doctor’s office, not knowing that visit would change the rest of my life.

When we finally met the rheumatologist, I showed him my lab test results and told him it was my brother who had them ordered.  He took a quick look at the results and showed me the sheet for the test called ANA or anti-nuclear antibody test.  It said positive with a 1:600+ titer (I forget the exact figure).  I looked at the doctor quizzically but rather than explain the ANA test to me, he said that he needed to order another series of tests to confirm something.  I remember him saying “lupus panel test” and then quickly stating “now don’t panic, this just means we need to verify something that this ANA test indicates, it doesn’t necessarily mean you have lupus already.”

I remember feeling light headed and hearing that doctor’s voice as if it came from far away.  I know only one thing about lupus– it killed the sister of a close friend.  She died within two months after exhibiting symptoms of the disease.  She was twenty six and left behind a two year old daughter.  I remember going to her wake and wondering why they chose to dress her in her wedding gown.  She was a newlywed and such a pretty bride.

I don’t think I cried on the way home after that doctor’s appointment.  I was quiet.  I remember my husband taking furtive glances at me and I couldn’t do anything to comfort him.  I felt so numb and empty, I didn’t have the strength to even take his hand or look him in the eye.

When we got home my mother was eagerly awaiting news on the doctor’s visit.  I told her quickly and dispassionately that I might have lupus and I was to undergo another set of tests to verify that.  I went to our room– not even bothering to turn on the lights– pulled up the laptop and googled lupus.  One by one the definitions came up –symptoms, diagnosis, prognosis.

I looked up at an old graduation picture of myself hanging forlornly on the wall.  I peered at that younger version of myself, barely visible, the flickering lights of the highway outside my window bouncing on the picture frame.  It was at that exact moment when I realized I could be dying, that I have a dreaded disease that is incurable.  And that was when I finally cried.

I suddenly felt all the fear and unbelieving despair of someone who knows, with finality, that death is on one’s doorstep, waiting to end everything.

I still shudder remembering how I spent that night. Unable to sleep and crying intermittently every few hours.  Walking about the house, looking at my two boys sleeping.

For days after that, I couldn’t look at or touch my two month old baby without breaking down.  It was just too painful.  We tried so hard to have that second baby, when he came it felt like a wish come true. Like all the pieces coming together to make life happy and our family complete.  To be so blindingly happy and to have all that happiness snatched from you.  It is every new mother’s nightmare – come true.

The day after, I held my son’s baptismal outfit thinking  I was so happy when I bought it, and then to forget that happy moment completely by nightfall…I thought of the word KisapMata ( which is also the title of a famous Filipino movie directed by Mike De Leon), in english it means in the blink of an eye, and thought to myself that it’s really true — a person’s life can change dramatically, irrevocably, in the blink of an eye.

ImageMy beautiful boy’s perfect baptismal outfit.

A week later I took the lupus panel tests and then a couple of days after my son’s baptism (oh that happy day I looked forward to with such innocence!) we went back to the hospital and confirmed that I had lupus.

In hindsight, my brother probably suspected lupus all along but he never told me.  I sometimes blame him for everything.  Thinking I would never have found out if he never insisted on those tests.  But most days I thank the lord for my Kuya.  Lupus is hard to diagnose and we wouldn’t have found out early if it weren’t for him.  At least now, I am on maintenance medications and I know what’s wrong with my body.  Maybe finding out earlier will help me stay alive longer.

A lot has happened since then, and these past months have been a long arduous process of getting back my bearings. Of getting over myself and continuing with life despite lupus.  There are days when I feel  great and others when I refuse to leave my bed.  It is never the same.  But now I feel with acuity the preciousness of each moment and I try everyday to find that calm, steady voice that says: “life goes on and everything will be alright.”

Who I am and why I write

I am a thirty four year old Filipina entrepreneur living in the province of Laguna with my husband, two children and our extended family.  I was diagnosed with systemic lupus erythematosus in December of 2012 and I had just given birth to my second son.

Being in one’s mid-thirties is still considered young and I have my whole life ahead of me, but the fact is I have a serious incurable disease and I really don’t know if I will live for the next twenty years or just until next year.  I am ok most days but sometimes I feel nothing but anger and despair. I have two boys to raise, the youngest just turned one.  There are days when I look at him and I wonder if I will see him grow up.

When I first found out about the lupus I couldn’t hold my baby without breaking down for days.  It was too painful to think I might leave him soon and I had just given birth to him. I was too terrified of the thought of leaving them without a mother before they’re ready.

They say every child begins the world anew.  I felt that way when I had my second son, like everything was fresh and wonderful and our family finally complete.  But I found out I had lupus three months after giving birth to my baby and all that was new and wonderful became a nightmare of fear and uncertainty. A new mother never thinks about dying. But it happened to me and to many others like myself I presume.  People just don’t think about it or talk about it.

I remember the exact moment, when it finally sunk in, that I had a life threatening disease and that I might die soon.  It’s hard to describe, that feeling, only that I was in a very bright room and everything looked black.  And I felt a pain, a real pain in my chest and I could hardly breathe.  I thought of my two sons and I cried.  As hard as I cried when my father died. Only this time I felt fear, a great sobbing fear of death and the unknown.

Death is always about somebody else — until it’s about you.  When you’re young, you don’t really think about it. You feel invincible.   And you have the luxury of not thinking about it yet. Well, I am still young, but I no longer have that luxury.  And I have mourned the loss of my youth and the loss of my health.

Sometimes I wonder if I will see grand kids and if I will ever reach retirement age.  Used to be I was scared of getting old, now I realize growing old is a privilege, something I now think about with longing.  I always thought I would be a great matriarch someday.  I had fantasies of becoming some grand old lola (grandma) presiding over family reunions.  Nowadays I just wish I could see my boys become men.  Yet I know I must prepare myself and them to the reality that I may also never see them grow up.  The thought hurts every day.  But I get up each morning, brave as ever, thinking and hoping I may yet live a long life.

I have come to realize that the only thing stronger than the fear of death is the hope for life.

So I clutch to this hope every morning, thinking don’t count me out just yet. I look at my baby and he smiles at me, he babbles and jumps and I feel joy.  One more day with my son and I am content.  I feel the beauty of each moment more acutely because I know time is running out for me.  I go to sleep at night wishing no new nightmares will come, I snuggle close to my first born and listen to him breathe, I kiss him and whisper to him my love. I think to myself another day with my kuya has passed and I feel fine.   And when the nightmares do come and I wake up with the blackness all around, I hold tight to my husband, my strength and my love, I feel peace and rest and find sleep again. In the morning, I wake up thinking “another day” and I am thankful.

***

What is the measure of a life?  We all derive some inner meaning from the lives we live, the causes and beliefs we dedicate ourselves to, but none of that matters because everything we stand for may in the end be just forgotten.  For who will remember but those who have loved us? And when they die, what remains?  There is nothing but history and the common humanity we share with each other.

I don’t want to pretend to any higher meaning or cause.  I merely want to tell stories.  My stories.  Of my life, of the people I know.  Those whom I love.  If I leave too early, and that seems to be a very real possibility now, I would want my sons to know of me.  Of my life and of my loves. I write this for them.  I write this to remember.  And if I am gone too soon, I write this to be with them still.  For them to know how much their mother loved them.  For them to see that life has limits but a mother’s love does not.

My Life To Do List:

I am a thirty four year old Filipina businesswoman. I live in the province of Laguna, Philippines, with my husband and two sons. This is the first post for my first ever blog and it seemed appropriate to start the with this list. To do #3 on my list is to become a writer and start that by setting up a blog.  So I am right now actually ticking off a very important part of The List. 

I was recently diagnosed with Systemic Lupus Erythematosus (damn name, it must be psychological or something but I can’t seem to memorize the full name or term for lupus, I keep checking the spelling on google). Anyway, I have lupus.

According to health.com “Lupus (systemic lupus erythematosus) is an autoimmune disease that, depending on the severity, can harm the skin, kidneys, heart, nervous system, blood cells, and more. Lupus symptoms vary widely and can include fatigue, joint pain, swelling, fever, and rashes”. It’s an illness where one’s immune system goes haywire and turns against itself — it is basically your body attacking itself. Ninety percent of lupus sufferers are women so it’s considered a woman’s disease but the men who do get lupus tend to have a more severe form of this illness. The cause of lupus is yet unknown and there is still no cure. Suffice it to say that it’s a dreaded disease. Not as awful as cancer but its almost there. Very unpredictable and quite the silent killer I was told. I feel fine today but could be gone next week. But that’s not saying much, because really, in theory, we could all be dead next week no? But anyway, I digress, because of lupus I stand a greater chance of dying sooner than most of my facebook friends.

It has been months since the diagnosis so I am calmer now. But still, it’s hard to wrap myself around the notion that I am a thirty four year old woman, with two boys, one of them still a baby, and I now have a chronic, incurable disease.

Death and diseases, it’s always about somebody else, until it’s about you.

My turn came earlier than most. I remember when we first found out about it. Didn’t really believe the doctor, I had to go home and google it. (haha, I believed more in google than the doctor no?) I had my laptop on the bed when it all suddenly hit me — I am sick and could be dying.

I cried of course. Not as hard as I did when my father died but maybe that’s how it is, you cry harder when it’s somebody else dying or dead. When it’s about you, the tears are more quiet. Because its more heartfelt and silence comes from fear.

But as I said, I am calmer now. Don’t cry as much now. I am starting to believe that I may yet live a long time. But I have been there– that sudden realization that “I may be dying” and the horror of that moment. All of us must face that terror and it may not be your turn yet but let me reassure you, when the time comes it will feel as bad as you think it will feel– but it will pass and you will feel fine afterwards. Such is the nature of life, you almost always accept what is given to you (or you go into denial but that’s another post altogether). I feel fine now. There was that horrifying moment. And then the calm. I am slowly accepting what most of us choose to ignore, that death is just as normal as birth.

A dreaded disease doesn’t really feel like what it shows in the movies. I don’t have a bucket list ala Morgan Freeman and Jack Nicholson because those lists are almost always way too expensive. I have kids to raise and that is my primary concern now, more than going to the pyramids of Giza or skydiving or some such grand pre-death fun and laughter moments. Those who do the live-your-life-to-the-full-before-death movie moments are either singles or senior citizens. Not mid-thirties mommies like myself. My goal now is to make everything as seamless as possible for my kids, that their life will go on as normally as possible even though I am gone. But take note, I plan to live a long life. I make fun of my parent’s senior citizen cards, but now realize I would give anything to be able to get one of those cards someday. And so that is my goal, to get a senior citizen card someday. I will fight this damn lupus until the end. And I am sure, there are many others who will go sooner than me (evil laughter).

So this is my Life To Do list. Don’t remember when I wrote it but I must have wrote it for myself soon after I found out about the lupus. Was reading it again tonight and realized how simple life and one’s plans can be if you just list them down. I am sharing it if only because I hope it helps those of you who, like me, have much “to do”:

My Life To Do list:

 1. Save and invest big time, asap.

2. Write my will.

3. Become a writer. Set up a blog.

4. Read again. Draw up a reading list and follow through on this list.

5. Update and start your life documentation:

• Print photos for photo albums

• Do regular family videos for the boys

• Write journals for each of your sons

• Have major pictures framed and displayed

6. Set aside money for the expenses of the illness. Sell land if needed for this expense. Trim down on expenses so we can   accommodate the additional costs of the illness.

7. Continue working. Continue with the business and your plans.

8. Do volunteer work – hospice care, volunteer teacher work.

9. Start eating healthy and do exercises – start on yoga. Acupuncture? Dr. Tan of Binondo (traditional Chinese medicine) and the hideous black tea concoctions?

10. Have regular quality time activities – build family traditions. Eat dinner together all the time. Have Sunday family mode –parks, trips, stay at home cooking or dvd festivals. Build on these so your son’s have good memories of their time with you.

11. Just be happy. Stop fighting with people, it’s not worth it.

12. Do regular vacations, do regular retreats. Be ready for the inevitable.