26th Infusion

Well… I forgot to write about this one after I had it. The reason I remembered is that I’m going for my 27th this Tuesday.

The 26th infusion went well all in all. There were several things that weren’t normal. One of my regular aides, wasn’t available that night. He had to go home to the province to take care of some stuff. He’s resigning next month and so after 3 years of service it’s time for him to move on to better things.

I’m actually quite a creature of habit when it comes to things like my infusion. I like things that are familiar. I wear the same things during my infusion day, eat relatively the same type of food, do the same routine. This time though I didn’t have my regular aide plus I forgot my lucky Livestrong bracelet. So needless to say I was a bit uneasy.

However the next day proved to be much like any other infusion day. Things went without a hitch. I had a quiet but pleasant day.

Looking back, I’m grateful to have reached the 26th infusion without any major headache.

Some patients have experienced adverse reactions after 30 or so infusions. So I’m actually quite nervous but I’m just relying on the fact that I’ve never really gotten allergies much in my life. I’m hoping that my body will continue to accept Myozyme and we’ll proceed without a hitch.

Happy 30th Anniversary Mom and Dad!

My mom and dad celebrated their 30th wedding anniversary last January 4, 2007. However being the great parents that they are, the skipped any kind of celebrations because they thought of their children first.

The past year has been a great as well as a hard year for my family. It was great because I was getting Myozyme, yet difficult because it entailed a lot of sacrifices from them. We were at the hospital twice a month for the entire year. That entailed expenses that weren’t there in the previous years. My parents had to sacrifice a lot.

My treatments will continue at least for the next few months. As such my parents deemed it responsible to save whatever extra money they had to make sure that I would continue getting my treatments. Even though it’s their 30th year of marriage, a significant milestone by anyone’s standards, they just decided to celebrate it quietly. No frills, no fanfare. It was enough for them to know that they are still very much inlove today as they were 30 years ago.

You would know how great a person is by how many people care about them. My parents are indeed great. My brother and I have been thinking of how we could celebrate our parent’s anniversary. But even before we could think of something, my aunt from the states already had her mind in gear. She wrote to both my brother, my cousin and I. She said that it would be a great idea if we could throw a surprise anniversary party for my mom and dad. She would help us out. She just requested that we do it when she and my uncle arrive in Philippines so they could be there as well. So the scheming began…

I started putting together the plan. I told my mom’s sister and brother about what we were planning and they immediately jumped on board. They helped look for a place where we could hold the party at. We eventually settled on the Tower Club as the venue. It happened that my mom’s brother is a member there. He agreed to let us use his membership for the party.

So on Jan 27, 2007 7:30 p.m., 23 days after the day of my parents anniversary they strolled into the Tower Club not knowing that there were 70 family members and close friends waiting for them, ready to shout “Happy 30th Anniversary!”. All along they thought that they were just going to have dinner with my mom’s brother and my dad’s brother and wife.

They were shocked!

We had a mini-program for the night. My brother was the emcee. He made a short presentation on the past 30 years. From the wedding, early years of marriage life and all the way to the present. We had a priest on hand to give a prayer and for them to renew their vows. With tearful eyes and as much if not more love than ever before my mom and dad both said “I do” once again after 30 years of married bliss.

My paternal grandmother gave a short speech, followed by my mom’s eldest brother to represent her side of the family, I was the last one to give a speech to represent my brother and I. To finish it off the priest gave our family a blessing. A buffet dinner followed after.

Several of my uncle’s friends agreed to entertain us that night. They provided an acoustic guitar player, a saxophone player and a singer. Needless to say they were fantastic. It was a fun night. They got several of the guests to sing. Even my brother!

All in all it was a great night for a great couple. My mom and dad have sacrificed a lot in the past few years. Especially for me behalf. All of which was done without making us feel that they were sacrificing. I never heard them say, I’m giving up this or that then making us feel bad about it. They loved their family more than themselves and did everything they could to make sure that we all had a decent life.

Like what I said during my speech, “when I was a kid, I dreamed of becoming an architect of businessman. However when I grew up my dreams changed. I dream of becoming the man that my father is and to find someone like my mom to spend the rest of my life with. My brother and I don’t have material wealth but we have the best parents in the world. I’ve grown to admire a lot of people over the years but no one comes a close second as to the admiration I have for my mom and dad”.

Thanks to my aunts and uncles for making this celebration a reality. We could not have done it without you. It was a perfect celebration. Nothing too fancy but still worthy of such a momentus event. Thanks to everyone who made it that night. Thanks for making it a wonderful party.

Mom and dad, thank you for the past 30 years. Thank you for making our family what it is today. I continue to pray for your health, happiness and wealth. May God continue to bless you always.

Some Life Lessons

I was reading the blog of my uncle’s wife, well technically she’s the wife of my uncle but my uncle and I are the same age so we practically just treat each other like cousins. Anyway, I digress…

I was reading through Pegah’s blog. I’ve always found her writing witty, intelligent and quite entertaining. Although she posts only once in awhile. When I get a chance, I read it. She had an entry that caught my attention. It was entitled “Lessons Learned: When Life’s Truths Slap You Across Your Face”:http://pegah_katigbak.blogs.friendster.com/my_blog/2007/01/lessons_learned.html

Most of her observations hit it head on. I agree with all of them but I’d like to focus on this one particular insight, well probably because at this time this is the struggle that I’m faced with. Pegs said:

bq. … that love is not the flutter in your stomach, the excitement of the kissing, touching or even (gasp!) sex. Rather, it is made up of these components: trust, loyalty, commitment and above all, friendship. Of course, if you add great sex to all of this, then you’ve got yourself something fantastic.

I wholeheartedly agree with this observation. I think the real love, the one that lasts a life time is made out of the qualities she pointed out. I’ve said this before, “marry someone who has the potential, if he/she isn’t already your best friend”. At the end of the day, it will be just the two of you. When the lights are out, you’re alone in your house, if you have kids they’re probably asleep, you better be sure that the person you’re alone with is your friend. Your best friend. Someone you can spill your guts out to, someone you can cry to, laugh with, share a quiet moment with, someone who’ll listen to you when you have something to say, someone who’ll tell you what’s on his/her mind, someone who despite just being alone with you in the room and nothing else to do would still feel like he’s having the greatest time in the world.

Buttlerflies in your stomach and the other stuff are well and good. That usually happens in the beginning of a relationship. You’re attracted to the person, etc. But true love should transcend that. It should be more than that. As you live with each other, get used to each other, you need something more to keep your relationship going.

Trust and loyalty are paramount too. You can spend the rest of your life with someone you don’t trust. Trust is very very important.

I guess, that’s why I felt so bad with my loss. I lost my best friend as well. Regardless. I do hope and pray that if God grants me my wish of one day settling down, I find someone who can be my best friend.

So That’s Why Models Are Paid A Lot

_this photo does not do justice to the ones Chris took_

It’s tough work. I didn’t realize being a model is tough work. Now I know why they get paid a good sum for a day’s work. Well in my case I didn’t get paid. Wait, wait.. I’m not complaining that I didn’t get paid. I’m saying it just as a matter of fact. Modelling is hard work. It’s no joke to smile the whole day. Ha!

So for today, one day only, I was a model. I was very fortunate to have been asked this opportunity to appear in an annual report. I’m not sure if I can say for what company, etc.. but I was really happy to do it.

“Chris Kirzeder”:http://www.chriskirzeder.com was wonderful enough to fly all the way from Chicago just to take my photos. We spent roughly the whole day together in three locations. The roof deck of our condo, my small home office and a local bazaar.

I had a great time spending the day with her. It was a real pleasure to work with someone so passionate with what she does. She’s truly a talented photographer. Why do I say that, you ask? Well anyone who can take this mug of mine and make it look good is a great photographer in my opinion. I hardly like to have my picture taken for the simple fact that I don’t think I photograph well. I’ve only had a few photos of mine that I was really happy with. Chris’ shots had me smiling. It went well. I do hope she gets to email me some of the shots. I’d love to keep it as a souvenir.

We started at 10:30 a.m. and ended at 5 in the afternoon. Quite a tiring day but well worth it. I hope the annual report comes out well.

See, these are the times that I feel blessed eventhough I have this dreadful disease. It gives me a chance to meet people like Chris. One word. Awesome!

Of Broken Hearts And Goodbyes

If you know me well enough, you’d be aware that one of the most important things for me in life is relationships. Not just with a special someone but relationships in general. I believe that a measure of how well you’ve lived your life is through the relationships you’ve built along the way. Some last a lifetime, some last a few years, some a few months.

The relationships I treasure most are family, friends and of course that special someone.

I’ve gone through a lot in my life. I wouldn’t say I’ve been dealt a harder life than most, different, difficult but each of us have our sets of challenges. So it’s not for me to say that my life is harder than others.

However relationships, especially the one I shared with my ex-girlfriend is very special to me. One that I’ve found so hard to give up and manage. Despite the countless heartaches and trials.

I guess it’s different when you’re in a relationship with someone like me. Someone who’s going through a battle with Pompe’s disease. There are sets of challenges that at the surface seem insurmountable. Once upon a time she saw past through that and loved me for who I am. Not what my physical status was but for the person that I was. For that I will always thank her and she will always have a place in my heart.

She gave me hope when I could find no reason to go on. For 10 years that we’ve known each other she give me one more reason to live. There were several reasons to live, don’t get me wrong. But having her made it easier.

I’ve always believed that people should at least feel love once in their lives. True love. I felt it with her in the past. A love that was unselfish.

Circumstances brought us apart. She had to move to a place far away and we could not sustain our relationship the way it was. I tried though. Even saving up for a year to fly to New York to see her. That to this day is the best 1 1/2 months of my life. I came home flat-broke but happy.

However none of the things I did was enough to endure this much time and distance.

Now, almost 10 years to the day we first met, we have to say goodbye to each other. Our paths have finally drifted apart. Funny, God allowed us to be friends this long only to start pulling us apart. I’m not blaming him. There must be a reason for it all. What I don’t know.

She has found someone else. Someone that she feels can make her happy. While I am wishing her all the best and blessings in the world, I need to walk away. It’s pretty ironic how much I love someone and yet I can’t bear to be “friends” with her anymore. It hurts too much.

I will always love her. I don’t think time will change that. I will always care about what happens to her. It’ll probably just be from the distance.

I feel sad and frustrated. How did I lose someone who loved me so much before. How could I let her slip between my fingers when there was once a time when she wanted to spend the rest of her life with me. Yet now that’s not the case.

For the first time in my life I feel really terrible that I have Pompe’s disease. I feel terrible that it has robbed me of a chance to move to a place wherein I can be closer to a person that I love. I hate the fact that it took away my ability to wrap someone I love in a warm embrace. Maybe just maybe if I could do that all the love I feel inside can transfer to her. Maybe she can love me back as she once did.

Goodbye’s are hard. It’s 10 years worth of memories. While we spent majority of it away from each other. Still. It’s 10 years of knowing a person. Developing a friendship that transcends oceans. We’ve managed to stay friends even though continents seperated us.

I’m not sure why God allowed us to remain friends all these years only to make it so hard now to remain so. I love her and I honestly would like to be friends with her but I just can’t stand the sight and the knowledge that she’s with someone else. It’s too painful.

I’m really sad I lost what I think is the love of my life. Fearful I’ll never find the real love of my life. This incident really pounded my sense of self worth. If she could walk away from me, the person whom I thought never will then what more other people. She’s already a special person capable of seeing people for who they are, I’m just not sure there’s someone else like her.

God… please make the pain go away. Please give me hope that I’ll find someone else. I honestly don’t want to live the rest of my life alone.

Exercising Pays Off

I’ve been diligently exercising my arms the past two weeks. Ever since my mom and dad got me a hand bike, I’ve been trying to do at least 10 mins a day on it.

When I started almost 2 weeks ago. I couldn’t turn the pedal a full 360 degrees on my own. This was without resistance. So my aide had to assist me. I did that for two weeks. 10 to 15 mins with slight assistance to build strength and endurance.

To my pleasant surprise, I tried it turning it on my own today and I could do about 2 mins without any assitance. So I was able to complete my 10 mins in 2 mins intervals with some rest in between. Without any help! Woohoo! Exercise for the first time in a long while actually pays off.

The 3 Fs and Other New Year’s Resolutions

So it’s the new year. What are your new year’s resolutions? I’ve classified mine into two. The “Serious” or I will kick myself if I don’t do it this year and the “Not So Serious” which will be good if I do it but not really a big thing if I didn’t.

Let’s start with the *Serious*

I’ve decided that this year I will focus on 3 Fs. Namely *Faith*, *Fitness* and *Finances*. Let me explain in brief.

*Faith* – I need to start praying more. God has been tremendously good to me the past year and all years prior to that. I really need to pray more to thank him. But apart from that, I’ve also been going through some trying times this recent past. I know that no one can help me with it except God. I need his guidance.

*Fitness* – It’s been a year since I’ve started my treatments. It has helped me a lot in the sense that I think the disease has slowed it’s progressed significantly if not stopped it from getting worse. I now feel enough strength to start really pushing myself to get into a better state of fitness. My mom and dad got me a hand bike for Christmas and I’ve been doing that regularly the past week. I hope that I can sustain this momentum. I feel a little improvement already. I’m also lining up some other activities.

*Finances* – There’s a lot of things I want to do with my life. Unfortunately with my condition I need money to do those things. So I really need to find a way to improve on my finances. I need to make enough money so I can do those other things.

And now.. the *Not So Serious* resolutions. Some things I want to do this year that aren’t really must do’s but certainly nice to do’s.

Kiss someone I like/love.
Hug someone I like/love.
Go out on a date and I don’t mean out with a friend. A real date.
Worry less.
Get out of the house more.
Watch more movies in the movie house.
Learn a new language.
Make new friends.
Sing a song at the Karaoke Bar.
Plan for life after 30.
Blog/Write every day. Starting now.
Give more.
Forgive more.
Smile more.
Laugh more.
Eat more.
Gain weight.

What’s your new year’s resolution?