Somtimes You’re Down…

As the saying goes “Sometimes you’re up, sometimes you’re down”, life is like a wheel, you can’t always be on top of the world. This week saw that happening to me. While I can’t really say that I’m down on the gutter, the week hasn’t gone my way.

I will be skipping my session this Tuesday. I got an SMS message from my doctor saying the Myozyme hasn’t arrived. They still have yet to receive word when it will be coming. It’s quite frustrating given the recent progress I’ve been making. But that’s life and sometimes things don’t go your way. It’s out of my hands so there’s nothing really I can do about it.

I missed several events that I wanted to attend to this week. First was our “Liga Grafica”:http://www.ligagrafica.com meeting. We hardly have meetings so when one was scheduled last Wednesday I really wanted to make it. Being Ash Wednesday I went to mass first before going to the meeting. However upon reaching the mall where our meeting was being held, my machine acted up (we figured out later it’s probably the car and not the machine’s fault) and I started coughing. That being said, I had to turn back and head home. It wasn’t worth the risk.

I wanted to attend a cooking demo, setup by my brother’s girlfriend last Saturday. I actually reached a bit further. I managed to make it to the place. After a few mins my cough started to act up again. I had to go home. It became worse when I got home. I couldn’t breathe and felt my lungs very heavy. I was on the verge of going to the emergency room. Good thing by that evening it got better. Coughing and respiratory problems are the scariest for me. Just a few minutes of not being able to breathe will kill you for sure.

We weren’t also able to attend the wake of the mother-in-law of Tita (aunt) Babes. That was a sad thing since Tita Babes and her husband has done so much for me. My mom and I really wanted to go but my mom decided to stay home as well since I wasn’t feeling good.

It’s time’s and events like this that get me down. It’s because I’m missing so much.

On the flip side, life can’t always be like this. Sometimes you’re up… I’m looking forward to getting back up.

Science Roll Interview

Berci from “Science Roll”:http://scienceroll.com just interviewed me. I got to know about his blog when Mark pointed it out to me. I checked it out and saw that he wrote about Pompe disease. I left him a message on his post saying that I was a Pompe patient and thanked him for taking an interest in Pompe disease.

He wrote me back saying he wanted to do an interview for his blog. I gladly agreed. So here it is, “my interview on Science Roll”:http://scienceroll.com/2007/02/23/blogterview-with-a-blogger-fighting-pompe-disease-a-rare-genetic-condition/.

Little Miracles

Life is filled with “Little Miracles”. Things that happen unexpectedly but amaze you. They aren’t big or earth shattering. When you tell other people about them, it may not seem like a big deal to others but for you they are. Well, one such thing happened to me today.

Since I started my Myozyme infusions, I’ve tried to manage my expectations. I know Myozyme has done good for some patients but it’s still more or less a case to case basis. It affects people differently. Some good, some less than ideal. So I’ve already told myself not to expect much. I’m not going to suddenly get up from my wheelchair and start dancing. No, nothing like that. In fact I’ve already accepted the fact that I may never walk again. My hope was to merely get off my breathing machine, even if it’s only during the day time. Lessen my dependence on my Bi-Pap machine. That would be fantastic.

I took my first steps towards that goal today. I consider today an exceptional day. I was feeling good and strong. I woke up without having a lot of coughing. My lungs seemed clear. I wasn’t feeling sluggish. I went about my morning routine. Stretching, assisted biking exercises and then onto my morning meal. I had oatmeal today with half a mango. I had some coffee with milk. Regular stuff.

I usually go to the bathroom afterwards to do my business prior to taking a shower. Now whenever I go to the bathroom, I don’t have my Bi-Pap machine with me but my aide and I developed a technique already to assist my breathing. Basically, he makes a fist and pushes it against my stomach in a pumping motion. This helps pump air in and out of my lungs.

After doing my business, I was transfered to the shower. I told my aide to stop pushing first. I wanted to try and see if I could breathe on my own. I tried it and felt good doing so. Seconds turned to a minute and a minute eventually turned to eight minutes. I was breathing by myself. Although not like a normal person. I couldn’t talk much, I was concentrating hard on my breathing. Towards the end I was desperately gulping in air. I managed to complete my shower though. I was transfered to my room without being assisted with my breathing. By the time I got to my bed and the Bi-Pap was placed on my nose, I was gasping and really thankful I’m breathing with assitance again.

I felt a deep sense of joy. I did it. 8 minutes on my own. Something I have been unable to do so in years. One thought kept me going while trying this exercise. That was the though of telling my parents that I was able to do this. I wanted to give them some good news. Something to show them that the past year and two months weren’t for naught. I’m showing some signs of improvement. The biggest of which is simply the fact that my condition has not gotten significantly worse. It’s remained the same if not slightly better. This is proof enough.

I called up my mom and dad to share the news with them. Both of them were happy.

I was able to repeat it that afternoon. But it was a little easier when I did it this time since I was on my wheelchair and I had a pillow on my lap I could push my stomach against. I breathed on my own for 15 mins, while getting my hair cut. I was exhausted after.

Little miracles. Nothing big for other people but certainly a miracle for me. It was definitely a good day.

Love Is Evol

Two of my friends, Gabe and JC thought about forming a group, they decided to include me and thus GeekChorus was formed. It’s a group that in so little words, wants to make Geekiness Cool or socially accepted. Meaning, it’s fun and cool to do smart things. Having a good time doesn’t have to equal booze, drugs, excessive partying, etc.. I’d like to think about it as being the Anti-Paris Hilton so to speak.

Anyway, last Feb 14, 2007 GeekChorus staged its first event called LOVE IS EVOL. It was a valentine’s party for single folks. Ok, those with partners are also welcome…

The event featured a live acoustic performance by Gabe’s old band “Da Pulis”. Lomomanila was also there for a Lomo Wall Installation. A reading of breakup letters rounded up the event.

It turned out to be a great event and managed to even raise money for “PSOD”:http://www.psod.org.ph.

I felt bad, I couldn’t make the event. I had come from the hospital the day before and was feeling tired that day. Plus it was the only day I could do the interview with “HappySlip”:http://www.happyslip.com.

Check out the “Love is Evol Page”:http://www.geekchorus.org/?page_id=6 here.

Pompe Blog Post

I’m quite happy every time someone takes interest in Pompe disease. It simply means that more people are aware of it now. The more people that are aware, the more chances that patients can be helped.

Bertalan Meskó is the owner and author of “Science Roll”. A personal blog chronicling his journey as a medical student. He’s focusing on genetics.

He posted “a great article”:http://scienceroll.com/2007/02/06/pompe-disease-a-rare-but-important-genetic-condition/ on Pompe disease that helps explain it in a little more understandable way for us laymen.

Here’s a quote from his post.

bq. Why do we have to talk about Pompe? The reason is diagnostic delay. The diagnosis often poses a dilemma due to the rarity of the disease, the variable rates of progression and the unspecific phenotypic features. What kind of disorders do we have to list as a part of the differential diagnosis?

Old Friends, True Friends

It’s sad that it took a tragic event such as the passing of our highschool friend JP to see old friends once again. A bunch of my classmates and I went to the wake of JP last night.

Dino, Cristine, Jason and his wife Aileen and Albert all went to my house at around 9:45 p.m. JP’s wake was in a church near my house. So we all decided to meet up at my place and go together as one group. Some of our other classmates were just going to meet us at the church itself.

The only guys I’m in touch with on a much more regular (every few months) is Dino, Cristine, Jason and Aileen. Dino and Jason were two of my very closest friends during highschool. Dino being my best friend in highschool. Cristine was our classmate as well but we weren’t really that close. It’s only now we’re getting closer since Dino and Cristine are going out with each other. Aileen is Jason’s wife and that’s how I got to know her.

It’s funny and great how despite not seeing them for periods of time things are still they same. When we’re together it’s as if no time passed by that we were apart. We have that bond that there’s no awkward stage. It’s literally picking up from where we left off. Of course there are some things that are different. A few more pounds here and there, can you believe it me included. I was an anorexic 60 plus pounds when I was in highschool. Not really a pretty sight.

I guess that’s really a measure of how true or good friends you are with people. You form such a great bond that despite time, distance or whatever maybe in the path of your friendship, it still transcends that. Your friendship still remains.

With regards to Dino, I really owe him a lot. My highschool years were one of the hardest times of my life. It was the transition between being able to walk and not being able to. By the time I was in my senior year, I could barely walk. I had to walk with a brace and assistance. Even with those, walking was at a snail’s pace. Add insult to injury, my school was in a building that was four storeys high. No elevators. I had to climb those stairs everyday just to get to class. There were times that we’d have to go down to the laboratories to attend other classes. I dreaded those days.

Dino stuck by me during those times. He was the one who’d walk with me. Even though he knew it might get him into trouble and make him late for class as well. He never left me to be alone. On times that we really needed to make the class on time, he’d carry me on his back and run just so we could make it.

Apart from that, we were really good friends and we got along well. I guess one of the best things I got out of dealing with Pompe is the true friendships I’ve formed.

It was good to see our other classmates as well. Jon and Kel. RJ went to the wake as well but we didn’t reach him. He went home before we arrived.

I also saw Benj and got to meet his wife Pia. Benj is JP’s cousin. I didn’t meet him in school but at a physical rehab center I used to go to. He was an intern there when I met him. Glad to see he’s doing ok and that he decided to stick it out here in the Philippines instead of going to the United States like most Physical Therapists do.

It seems like we were just in class yesterday. That was 12 years ago. Next time guys, I hope to see you under better circumstances.

HappySlip On The After Mac

!http://www.fightpompe.com/images/30.gif (Happy Slip Logo)!

I don’t really post much about the other blog I write for here but in this case I’ll make an exception. I’ve recently done an interview with one of online video’s rising stars Christine of “HappySlip”:http://www.happyslip.com.

I became a fan of her videos after my dad showed it to me. How he got it? Don’t ask me… I didn’t ask him either. Anyway, I watched the videos on YouTube. Visited the HappySlip web site as well and got hooked.

Christine is such a talented videographer, actress, comediene, etc. Considering most of her videos are one man/woman production it’s quite impressive. She’s funny and entertaining. My favorite videos are “Mac Beautiful” and “Home”.

Oh it helps that’s she’s also easy on the eyes. :) Go check out my “interview with her at The After Mac”:http://www.theaftermac.com/a-little-bit-of-happy-happyslip-that-is/.

R.I.P. Jay Tayag (Feb 15, 2007)

Jay or J.P. Tayag was a classmate of mine during highschool. We were good friends back then. He was a happy person. Full of energy. I’ve since lost touch with him after we graduated from college. We still went to the same college but not as classmates anymore.

So it was totally a shock when I received an SMS Thursday morning. The message said that Jay died at the hospital that morning from stab wounds. He was stabbed the night before. 8 times I’ve been told at a restaurant in Quezon City. The guy who stabbed him got away.

It comes totally as a shock. It just goes to show, you never know when your time is up. Whenever someone I know dies, I’m always reminded that we’re on borrowed time. I guess we really just have to live life to the fullest. Something I haven’t been doing the past few months.

I’m at a comfort zone that I find it scary to leave it. I should. I might end up regretting it if I don’t.

To Jay, wherever you are my friend, I hope you’re happy and at peace. I’m sure you’re up there in heaven happy. I’ll see you there my friend. Hopefully not for a very long time though.

New Look

I’ve gotten bored with the design of this blog. It’s been more than a year old. I was never happy with it actually. I just didn’t have time to pour into designing a template that I’d be happy with. I know that has to change.

In the mean time, I got this template. It’s called “Minimalist”. It’s designed by Sven Elingen. I like it because it’s clean and simple. I’m using this for the mean time. I might use this as a basis for the new template or just evolve this one. I still don’t know. What I do know is I like the layout. So there…

28th Infusion

Well I just got my last infusion of the current batch of Myozyme on hand. We now officially have run out of our supply. The good thing is that the ICAP has been approved to be extended for another 3 months. The bad is that well, due to delays in paper work I’ll most likely have to skip a session. That sucks. Why? Coz I think I’ve been making progress with my exercises. I know Myozyme has been helping with that. I’m actually feeling my arms get stronger. My arms are also slightly bigger now. Every time I skip an infusion, I feel as if I’ve taken two steps forward but one step back.

Anyway.. my 28th infusion went well. Most of it was pretty much the same as the others. Nothing really different. Oh, except for the fact that they had to poke me 5 times to get the line in. The last time was also the most painful one thus far. I’m not sure if it hit a nerve or something but thank God I can’t move my arms that quickly. I would have grabbed the needle from the intern and yanked it out myself. Hahaha.

Funny story though… My regular nurse, wakes me up at 7 a.m. I’m still groggy and half asleep. She tells me that she can’t make it for her regular shift to watch over me since she’s still stuck with another patient. She said she was sorry. After that, she tells me, to make up for it she has a Valentine’s day present for me. I ask her what. She tells me she’ll introduce me to a girl later that afternoon. The daughter of her patient. She said that she’s cute and nice. She’ll introduce her to me. I was awake at that time, laughing and astonished at what she just said.

I thought she was joking. Apparently she was serious. She did introduce me to her later that day. I was embarassed for the girl. She dragged her all the way to my room just to introduce us. The girl was nice. She’s been staying and watching over her mom for the last week or so.

As funny as the story is, I was really touched. I told my nurse that I was really happy with what she did for me. Not so much that she introduced the girl. I’d probably not see the girl ever again. I was happy for the plain and simple fact that she still believed in me as a person. She saw that I was a good person and deserved to be introduced to someone else. I don’t know how to explain it..

I guess something close would be like this. I have some friends who would be happy for me if I found someone else but I don’t think they’d go as far as set me up or introduce me to another girl for fear of the wrath of the other person. Ok that’s a bit exaggerated. But you get the point. They like me and root for me but not as far as actually take the next step and believe that much to actually introduce me..

Anyway, my nurse believed in me that much. That’s what I’m happy about. There’s still some people who see past my disability and still see me as a good person, worthy of an introduction to someone else.