Category: Ramblings

Several people have talked to me, emailed, sent messages asking how they can help. Well there are several ways that you can help. But first, determing how you can help means asking yourself you you want to help. I’m personally advocating for several organizations not just asking for help personally. You can pick from these and help out any which way you can.

You can help the ff:

h2. PSOD (“Philippine Society for Orphan Disorders”:http://www.psod.org.ph )

The PSOD is the organization that we recently launched. It aims to help people with orphan disorders such as Pompe’s Disease, Gaucher’s Disease, Maple Syrup Urine Disorder and others. The goal of the PSOD is to create awareness for orphan disoders, develop a national registry for the diseases, support research and help in policy formation.

The PSOD is a new organization and we’re at our “growing pains” stages. It will evolve over time and hopefully with people’s help it can help improve the quality of life for people with orphan disorders here in the Philippines.

If you want to make a donation to PSOD or have any ideas on how to help please send an email to “info@psod.org.ph”:mailto:info@psod.org.ph or send me an email and I’ll make sure they receive it as well.

h2. AMDA (“Acid Maltase Deficiency Association”:http://www.amda-pompe.org )

Acid Maltase Deficiency is also another name for Pompe. The AMDA has been at the forefront of the battle against Pompe. It’s one of the leading patient groups for Pompe and responsible for helping push the advancement for Pompe research and treatment.

I belong to the AMDA and I as well as countless patients owe a lot to the AMDA.

If you want to help the AMDA you can go to their “website”:http://www.amda-pompe.org and make a donation. There’s a paypal donation button there that you can use to donate.

h2. Fight Pompe

If you want to help me personally I would also appreciate it. I’ve thought of several ways you can.

*Fight Pompe T-shirts* – I’m selling some shirts at my “CafePress Store”:http://www.cafepress.com/fightpompe you can buy a shirt there. Profits from the t-shirts will go to helping me Fight Pompe. If you want to help me, why not get a shirt out of it. The shirts also help create awareness.

*Simple Donation* – Don’t want to buy a shirt and you just want to send a donation? That’s fine too. I’d appreciate that as well. Just send me an email or leave me a message here and I can give you options on how to do it.

*Spread the word* – Just by helping spread the word about Fight Pompe and getting people to read my blog is help enough. The more traffic I get the more people will be aware about Pompe. Awareness is the first big step against the fight.

All the help I get from Fight Pompe will go to funding medical expenses and other related expenses that help me fight this disease not just for me but also for other people. I’ve always believed that before I can help others I also need to help myself so I can be strong for others.

2006 has been both an exciting as well as a hard year. Exciting because of the treatment I’m getting. Hard because it’s also an expense that not only takes it toll on me personally but my family as well. I’m not complaining though. It’s been great.

The rest of the year holds so much promise not just for me but for other Pompe patients and the PSOD. I hope that we get to accomplish a lot.

I had to spend a night at St. Lukes. Believe me, after 6 months of going to the hospital every other week, St. Lukes was the last place I wanted to be in. However, the doctor felt otherwise.

It started when I woke up Tuesday morning with the left side of my head feeling numb. It usually happens when I sleep in a bad position. The blood flow is restricted and thus my head goes numb. Normally once I change positions the numbness goes away. I thought it was just another episode. So I went along my daily routine.

I noticed that something was wrong when I was taking a shower. My head was still numb. That was a full 30 mins or so from the time I woke up. I started worrying. I finished my shower, got dressed and even started to work. My head was still numb. That’s not normal…

To make matters worse, I was having diarrhea the night before and it continued Tuesday.

By lunchtime the numbness was still there. I decided to call my dad. He came home and checked how I was doing. He then suggested that I go to the E.R. I agreed with him. This was starting to get worriesome.

I got to the E.R. around 4 p.m. I couldn’t leave the house earlier than 3 because my stomach was still bad. It took an hour to get to the hospital due to terrible traffic.

My E.R. experience was different this time though. From the last time that I was in bed the whole time, this instance I was feeling ok and I sat through the whole time. A notable thing too was the fact that when they drew blood I was sitting down as well. Prior to this everytime they’d draw blood I would lie down because I’d get dizzy. Not this time though. I was fine.

The neuorologist’s fellow saw me first. Did some preliminary tests to check if the numbness had something to do with the nerves or something like that. Apparently it didn’t. At least she thought so. When the neurologist came, she also had the same conclusion but she said I should stay overnight for observation. I protested but they insisted. The doctors won.

I spent the night in St. Lukes. Needless to say it was one of the most expensive but boring nights I’ve had so far…. The only consolation is that I’m ok. I woke up the next morning feeling better. The numbness was gone. The doctor concluded that it must have been muscle spasm or a pinched nerve that caused the numbness.

I also saw my pulmonologist while I was there. He’s looking at my most recent x-rays. He said from first glance everything seems ok. Not perfect but nothing to worry about. He’ll have to compare it to the previous one though.

Oh well.. Better safe than sorry I guess..

A heartfelt thanks to all those people who took the time out to leave messages on my blog. I’ve been receiving a whole lot of them ever since Nina’s article came out and since the Pipol episode aired last Tuesday, well Wednesday early morning to be exact.

I’ve received messages from India, Kuwait, L.A. and some other places. I’m really touched and flattered that all those people cared enough to look for my blog and read through it. I’m happy because my campaign to create awareness for Pompe is slowly taking flight.

To all those who sent messages, I’m trying my best to reply to them. Please forgive me if my reply is late or if it still hasn’t arrived. Rest assured I read through all of them and value your thoughts, words and prayers. Many thanks and God Bless.

I wouldn’t feel right if I passed up the chance to at least post, point out and try in my own little way to help out someone else. Why? Because a lot of people have helped me, so it’s time to pay it forward.

Fil-Am Christine Pechera is suffering from non-Hodgkin’s lymphoma and is in urgent need of a bone marrow transplant. Right now she doesn’t have a match in the donor registry. She’s making an appeal for people to register as a bone marrow donor. Hopefully by some miracle she finds a match. If you’re a filipino residing in the U.S. you can be a donor.

Check out “Christine’s personal video appeal”:http://www.youtube.com/watch?v=kaK84LhbCQc&eurl=http%3A%2F%2Fchristine%2Esite%2Eph%2F%5Fmgxroot%2Fpage%5F10763%2Ehtml or check out the web site “www.savechristine.com”:http://www.savechristine.com maybe you’re the match she’s waiting for. The details are there. Check it out, now.. run..

I’m really lucky to have friends like Bambi. She’s my most frequent visitor at the hospital. It’s good that her work takes her to PGH as well. So she really takes the time out to drop by everytime she’s there.

It’s always fun to have her around. Laughter is always present. Conversation always light. It’s a good thing because with her there in the room, my mind is away from my treatment thus ensuring that I remain calm…

Thanks Bambi! I really appreciate it.

To my dad, happy happy father’s day. You’ve always been, always will be my hero. Whatever I’ve become today I owe in part to you. You’ve always been there to support me. You never lost faith and hope in me. You’re the greatest dad on earth.

To all my uncle’s and cousins who are dads, happy father’s day to you too! You’re also great dads. I guess I’m really lucky to be a part of this family. I have a lot of role models to look up to, if and when I get to be one.

We celebrated the 40th day of my Lolo (grandfather) yesterday. Well it didn’t exactly fall on the 40th day since his death but due to schedules and stuff we had to celebrate yesterday.

We brought his ashes togther with my Lola’s (grandmother) ashes to Lipa, Batangas. That’s my Lolo’s home town and it was his request to be laid to rest there.

A few weeks back we had my Lola’s body taken out from her grave and cremated. It was part of my Lolo’s wish that both of them be brought to Lipa, where they can be laid to rest together.

Family and some close friends gathered at Floral Gardens Cemetery to commemorate the event. It was a solemn ceremony. Afterwards afternoon snacks were served at a function room at the MVL building.

I haven’t been to Lipa in quite some time. Things have changed. A lot more buildings and people. It’s not the town I remembered it to be.

How things change as time passes by.

It’s always hard to say goodbye to people. Especially when they’re still young. Today I went to the funeral of my friend Gabbie. I met Gabbie through his brother who happens to be one of my good friends.

It’s been close to 9 years I think from the time I first met Gabbie. She was still a young girl then who was suffering from a hear condition. She was frail and sickly when I met her. She had strong faith though. She kept pushing.

By some miracle Gabbie got better. So much so that when you looked at her you wouldn’t think that she had a heart problem. She regained her health and looked really good. The doctors in fact were amazed by her recovery. Their family attributed this to her faith. She made a novena to go to a church in Batangas every first saturday of the month. She got better because of this I think. A true miracle.

However last friday, years after Gabbie got better she collapsed and was rushed to the hospital. She was DOA but was revived 30 mins after arriving at the E.R. Her prognosis was grim though.

Last Monday Gabbie passed away. It’s a devastating loss to her family. She was the youngest and well loved by all her family members. She had a way of bringing people together.

Even though doctors have said before that she was a “walking time bomb”, you’re never ready to lose someone. I know the family didn’t expect it so soon.

Gabbie, I know your family will miss you. Your friends will miss you too. I hope you’re happy there in heaven. I know you’ll welcome us with open arms when it’s our time to go.

God Bless you Gabbie.

I made it to the papers today and a news program last night. I have “Niña Corpuz”:http://ninascoops.blogspot.com to thank for it.

I met Niña through common friends. A friend of mine was celebrating her birthday and we were supposed to eat out. I couldn’t make since I had something to finish that night. However they decided to pass by the house on their way home from dinner. Niña was with them. So our paths crossed.

She asked if she could do an interview with me. Of course I said yes. Why? because any chance I get to talk about Pompe is a welcome one. Although she wanted to do a story on me as a person with Pompe as opposed to just the disease.

So a few weeks after our first meeting Niña came by the house to do an interview. It was a short but interesting interview.

She didn’t know when the T.V. interview would come out since it would be at the mercy of the producers of the shows. Finally it came out last night. The program it came out on was ANC’s “The World Tonight”. I didn’t know it was coming out on that show until several friends of mine sent me text messages to say that they saw me on T.V. Good thing there’s a replay. So I caught the replay at 2 a.m.

For the T.V. interview it was Lee Quisumbing who did the report but it was Niña’s story.

Niña also wrote an article about me for her column on “The Philippine Star”. It was a coincidence that this came out a day after the T.V. interview. As a friend of mine said, it was a media blitz. Hahaha.

The article came out in the entertainment section because Niña is really an entertainment reporter. She veered of her regular niche to write this story. It was quite amusing to see an article about me in the entertainment section. Surrounded by stories of celebrities. Something I’m not..

Niña did a great job. I liked the article. Not because it was about me but she presented the story well and it was a light but good read. I loved the first paragraph which goes..

bq. I’ve been told there are two ways of looking at things. Is the glass half-empty or half-full? I’m usually guilty of the former until a guy named Dickoy showed me that even if the glass is broken, it’s just, well, glass.

As a result of the T.V. interview and the article I received several emails and messages from people. All the messages were good and very much appreciated. Thanks to all the people who took time out to write to me.

Thanks Niña for writing the story. You’ve helped a lot in the Fight against Pompe. By doing the interview and writing the story you’re helping create awareness for Pompe. For that I am grateful.

If you want to read the article you can find it at “Philstar.com”:http://www.philstar.com/philstar/NEWS200606091704.htm or at “Niña’s web site”:http://www.philstar.com/philstar/NEWS200606091704.htm.

What I thought would be a nice evening turned out to be well.. not quite. At least not in the beginning.

The great thing about getting Myozyme is that now it’s allowed me to regain some of the things I’ve not been able to do. I now have more energy to go out again and enjoy life.

We went out to celebrate my brother’s birtday. We were going to eat at a restaurant called Buma at Tiendesitas in Ortigas Center. My mom and dad have ate there before and said that the food was good. My brother wanted to try it out.

I’ve been using a “Bi-Pap breathing machine”:http://www.cpap.com/productpage/respironics-synchrony-st-bipap.html 24/7 for several years now. I have it attached to my wheelchair. I also run it with an external battery although it can also run via electrical current.

When we got to Buma, we were seated at our table. We then asked if we could plug in to the electrical outlet to conserve my batteries. The waiter said yes. He then informed us that they’ll be charging us for the use of the electric outlet. My parents said sure. We were then told that it would cost 500 pesos per hour (a little less than $10). What the hell…

My dad went to talk to the manager to clear things up. It could have been just a mix up. No dice. The manager said that it was policy. My dad tried to negotiate a fair rate. Say 50 pesos an hour ($1). No luck there.

My dad went back to our table mad. He told us that we were leaving. He had our orders cancelled and we went to the restaurant next door.

Wow.. How uncompassionate can some people get.. I mean I’d understand if we were plugging in a laptop, celphone or whatnot. But a breathing machine?!?! Have a little heart. It’s not as if we’re going to make money of the electricity. Plus the Bi-Pap doesn’t draw that much power. Certainly not that much to warrant that kind of fee.

In the end we just ate at another place, Mario’s Kitchen. They were also going to charge us for electricity but at least at a reasonable 50 pesos ($1) an hour. After we finished dinner and were about to pay for the food. The waitress told my dad that they decided not to charge electricity anymore. My dad was happy. At least some people still had compassion in them. My dad left a tip for the waitress.

Rest assured my family will not be eating at Buma again.. Not until they apologize and promise not to treat customers like that ever again..