Happy New Year!

!/images/27.jpg (Fireworks exploding in the night sky)!

To my family, friends and to the readers of my blog, I sincerely wish you a Happy New Year. 2006 was as a whole a great year. I hope that 2007 will bring us all an even better year.

May your hearts desires be granted in the new year to come. It’s a fresh start for all of us. I hope that we all make good use of this year.

Have a Happy Happy New Year! I hope that your celebrations are filled with joy spent with family and friends. For those playing with fireworks I hope that you all will be safe.

God bless us all. Here’s looking towards a fantastic 2007.

Looking Back At The Year That Was

In a few hours 2006 will pass and we’ll be ushering 2007, a new year. A chance for a new start, new adventures, another 12 months filled with joy, happiness, surprises, as well as sadness and hurt. That’s ok though. That’s life and that’s what makes it interesting.

2006 has been both a good and bad year for my family and I. More of good though. Notably 2006 showed progress for me with Myozyme. Nothing big or dramatic. Very small in fact. However the true blessing there is that for the first time in my life this is the year with very little or no decline in my health at all. Without Myozyme I probably would not be writing this entry as I would probably be just in bed and with no energy to get up or do anything. I thank God for giving me relatively better health this year. It’s still tough though and probably will take a long time before there is any remarkable improvement at all. As they say “Patience is a virtue”. I will have to be patient.

This is also the year that my “Lolo” or granfather passed away. My mom’s dad passed away this year due to complications from diabetes which resulted in a lot of health problems for him. Growing up I used to be really close to my Lolo. Some would even say that I was his favorite, being his first grand child. We also share the same name. No, he’s not Juan too. My second name is Benedicto and it was taken from him. In fact both my names come from my two grandfathers. Juan is my dad’s father and Benedicto is my mom’s father. But I digress. Over the past few years things happened that made us drift apart. I will not dwell on that. Suffice to say that it is one of the very few regrets I have in my life. I always kept thinking I have another day to fix things. But by the end, it was hard to talk to him already and I didn’t get the chance to really fix things in the end. That’s what is sad.

2006 brought me new friends as well, some of them I’ve known already but it was this year that we really became closer. Most notable of which is Doc Lani. She and I have practically spent spent 2 days each month just talking. She’s the doctor that is at bedside everytime I get an infusion. When you spend that much time talking with a person, you get to know them a lot. She is one of the kindest persons I’ve known.

Another milestone of 2006 was the founding of “PSOD”:http://www.psod.org.ph marking the start of hope for fellow Filipino’s with rare disorders. The PSOD is a small group with limited resources but we’ve made a vow to try our best in order to help Filipino’s with rare disorders. 2007 will be an important year for “PSOD”:http://www.psod.org.ph as it will try its best to develope the endowment fund.

I’ve also seen a lot more public exposure this year. Several TV appearances as well as being featured several times in newspapers and a village magazine. I still get really amazed when someone I meet in public already knows who I am. It’s funny, I was chatting with a friend of mine who’s on vacation in the United States. We had a video chat and his young niece was with him. His niece told him that she’s already seen me on TV. Apparently they watch “The Filipino Channel”.

I turned 29 this year. This will be my last year as a 20 something. To be honest I felt sad. I’m turning 30 next year and I’m still not where I hoped to be by the time I was 30. I had a mental picture in mind growing up. I really far far from that. By this time I hoped to be married, own a house and a car and have the foundations of a fledging business that will support me and my family through our lives. None of these are a reality yet. The only thing I think I can make true as of this very day is buy a car, but why? I don’t drive. I’m content in using the family van instead. This year did mark our first complete year with Sparkplug Studios. But it’s far from a business that can support me much less my family for the years to come. We’re still at the growing pains stage and in fact I’m happy we even made it this year. I’m hoping we’ll do better next year.

As for love. Alas that’s something that I think will take some time. I’ve had many “crushes” this year. All of which really don’t have the potential for anything more than to make me smile on days that I feel down. Not because they’re not girls that you’d want to marry instead, the circumstances or some other reason just doesn’t make it possible. Who knows maybe one of them still might be the one. But as of now I just don’t see it yet. However, they still made this year very very interesting.

I think that this is the year I need to leave the past behind in terms of love. If I cling to it I might not survive. If it was meant to be God will find a way in the future. As it is, I just need to trust God and let go. Do you know the feeling that you fall on your back in the hopes that someone will catch you? The feeling of trusting someone else to catch your fall. That’s what I need to do. Let go and let God. It’s difficult but it’s something that needs to be done. It’s hard to let go of practically a third of your life.

As a whole 2006 was a great year. I would even say it’s a life changing year for me. I hope you had a good 2006.

Merry Christmas!

From my family to yours, we wish you a merry Christmas. Amidst all the celebrations, food, and cheers we hope that you remember the true essence of Christmas. The birth of Jesus Christ the Saviour.

Times are tough and each one of us has his/her own struggles but let us remember that Jesus saved us from our biggest burdens. Let’s be thankful for that gift.

I’m thankful this Christmas that I’m able to celebrate it once again with family and friends. In as much as times are difficult Christmas is still worth celebrating. It’s not about the gifts and the food but the people and how who celebrate it with.

Merry Christmas to you all!

25th Infusion

I went to the hospital last December 18 in preparation for what was to be my 25th infusion. It was scheduled for the next day.

Things were pretty much the same as the usual nights before an infusion. Except that the Christmas spirit was in the air. Sure times are a bit tough now but that doesn’t stop people from celebrating Christmas. The hospital had pockets of Christmas decors set-up by individual groups per section of the hospital. Some were having their Christmas party, some were preparing for their own party while there were people who have already finished their celebrating.

The night went pretty much quietly. My aides and I ate our dinner, watched T.V. and basically just passed away time till we all fell asleep.

Infusion day went the same as it pretty much does. It’s just less strict now when it comes to procedure since the infusions now aren’t under the Expanded Access Program (EAP) anymore. Instead this is our second infusion under the International Charity Access Program (ICAP). That being said, it doesn’t mean that the doctors and nurses are being lax about the infusions. They’re are still taking the necessary precautions to make sure that I have an uneventful and safe infusion.

My 25th infusion effectively marks my one year on Myozyme. December 19 is one day shy from the day I got my first infusion which happened December 20, 2005.

Having been on Myozyme for a year now I am extremely happy and grateful for the year that has passed. I’m happy that I was able to survive this year intact. Nothing untoward happened to me during my infusions. Except for “one eventful infusion”:http://www.fightpompe.com/article/38/6th-times-a-charm, the rest pretty much went well.

I’m grateful for the year that was. I’m grateful for having the chance to receive Myozyme and continuing to do so. I’m grateful for the team of doctors that have cared for me this year. They have done a wonderful job in making this experience a good one.

I’ve been hearing some bad stories of other patients and their experiences with infusions. Some of them have been unable or had a hard time getting Myozyme. Some have had troubles during their infusions with some patients suffering from a mis-inserted I.V. line thus the enzyme not being able to get to the blood where it’s supposed to go. I’m grateful and extremely happy that I’ve had very little bad experiences with infusions.

I thank the lord for giving me this year. A fellow patient asked me if what benefits or what improvements I’ve felt over this past year with Myozyme. I honestly will say that there is a little improvement. Not much by other people’s standards. I’ve managed to get back to going out again although still not as much as I’d want but certainly better than a year ago. Energy has improved however strength has not.

However the biggest thing for me is that while this is liitle improvement, at least there’s no continued progress of the disease. Without the Myozyme I’m not sure what state of health I’d be in right now. So I’m grateful I’ll be living another year to Fight Pompe.

Time flies by so quickly. It’s been a year. Here’s to another year with hopefully more improvements to come.