Brothers and Sisters

16 episodes later, I’m definitely hooked on the ABC drama “Brothers and Sisters”:http://www.abc.com/primetime/brothersandsisters which is really not the typical show I’d watch. Yet, I’m looking forward to seeing the next episode.

Here’s ABC “description of the show”:http://abc.go.com/primetime/brothersandsisters/about.html.

After watching the first two episodes I couldn’t let up. The show is very well written. The stories are interesting. The cast is brilliant. I wasn’t so hot about Calista Flockhart in the past but I must say she’s doing a good job in this series. I know she was a hit before with Ally McBeal but I really didn’t take a liking to her before.

The dialogue is great. It’s witty, intelligent and heartfelt. Here’s one of my favorite scenes from episode 14 “Valentine’s Day Massacre”. To give you a background, Justin (one of the brothers, who is a veteran and became an addict after the war) recently came out of a rehab facility. Prior to entering he turned to drugs again after being clean because he was being called back to active duty. He couldn’t handle the pressure of going back to war and so he turned to drugs. This caused Tyler, his then girlfriend to leave him when she found out that he was doing drugs again. Justin after getting out gets in touch with Tyler and finds out she’s seeing someone.

Valentine’s evening Tyler calls Justin to wish him a happy valentine’s because she knew that he probably would not have any valentine’s. She accidentally blurts out that she was going to an itallian restaurant in a specific area. Justin after putting the phone down, realized he had to tell Tyler how he feels. So off he goes to look for her. It takes him and his nephew and niece whom he’s babysitting off to 19 different itallian restaurants.

The following is taken from the restaurant scene:

*Justin:* Hey.

*Tyler:* Justin. What are you doing here?

*Justin:* Uhh. can I talk to you for a second.

*Tyler’s Date:* No you can’t. Tyler, who is this guy?

*Tyler:* He’s a… he’s a friend.

*Paige:* They were boyfriend girlfriend.

*Cooper:* Gross.

*Tyler:* We weren’t that serious actually.

*Tyler’s Date:* Ok, you know what man, how ’bout you get on your way. Right now.

*Justin:* Look, I’ll get out of here right after I say what I came to 19 different restaurants to say.

*Justin:* Look I didn’t come here to win you back. Tyler. I hope you’ll come back to me. But I’m not dumb enough to think that anyone can just win you. But I just wanted to let you know what you mean to me.

It’s part of getting clean and getting clean is the hardest thing I’ve ever done in my entire life. But one of the things that got me through it is the hope that someday that I’d get to be with someone like you again.

So happy Valentine’s. I’m sorry I ruined it. Umm. But you called me first.

I’m sorry for interrupting your meal.. uhh.. Happy Valentine’s day.

Now, call me a wuss or something like that I don’t care. I’m a romantic at heart. I know how Justin feels. Heck, I once flew an entire ocean and a great expanse of land to get from Manila to New York just to see if a girl would still love me when she sees me after several years. So, yeah I understand how Justin feels.

I’ve always been a firm believer that if you love someone, you’ve got to tell her/him. There are also somethings that despite what logic tells you, it just doesn’t matter. Practicality goes out the window.

I can also relate to what he had to say that getting clean is the hardest thing to do. In my case its getting better. I’m really trying now to get better. One of the main driving factors that help me get by is the thought that one day, maybe one day that someone like the girl I loved before, will love me someone like me. Someday some girl might just take the chance and see me for who I am, beyond the Pompe and disability and see the real me.

Getting Back On Track

I just got word that I will be going back to my infusions on Tuesday. Hooray! My “last infusion”:http://www.fightpompe.com/textpattern/index.php?event=article&step=edit&ID=138 was February 13. That was almost 7 weeks ago. Quite a long time between infusions. Rather than dwell upon that I’m just happy to hear that we’re finally getting back to it.

I’m hoping that my body adjusts well to getting back to infusions. After all these weeks without Myozyme I hope my body will not have any adverse reactions to getting back on it. I’m confident it won’t.

I’m really excited to get back on track to exercising. I never stopped but I couldn’t push myself as much. I’d always feel tired and out of wind.

I was doing 25 mins on my handbike before stopping the infusions. Now I could barely get to 20 mins. By that time my arms are so heavy.

Here’s to getting back to infusions. Thanks to my doctors and the people at Genzyme for getting this done.

The Winner Is…

We’ll find out tonight, when the “2007 Philippine Blog Awards”:http://www.philippineblogawards.com.ph/ are handed out. Too bad I won’t be able to make it to the award ceremonies.

!http://www.fightpompe.com/images/32.png (The 2007 Philippine Blog Awards)!

My problem is that it’s my good friend’s 30th birthday. I can only go to one event since I’m having problems with my bi-pap’s batteries. I’m just not sure if I have enough juice for both events. Plus I don’t think I have enough energy for both events. Given it’s 6 weeks plus since my last infusion. So in this light, it’s definitely an easy choice.

While the blog awards are very important. Friends are more important. I will miss networking with other bloggers and attending the event. I’m sure it will be a good one. Oh, and I’ll miss the raffle. Darn!

Good luck to the rest of the nominees. I guess we’ll find out tonight who’ll bag to trophy. For the personal category, which I was nominated for, I think Shari of “Misteryosa”:http://www.misteryosa.com/ will bag it. If “this poll”:http://www.atheista.net/?p=214 is any indication of things to come. “Misteryosa”:http://www.misteryosa.com/ leads followed by “Bikoy.net”:http://www.bikoy.net/.

No bad feelings though, even if I don’t win. Any of these guys are deserving and at the end of the day my goal is still about creating awareness and sharing my life so that others may benefit. The Philippine Blog Awards has already helped a lot in that regard. Traffic to my blog has improved and seen a spike but tappered off already. Still more people have seen it and read through it. That’s good enough.

Good luck everyone! Sorry I couldn’t make it. But like I said, my friend is more important to me than an award. She’ll be 30 and that’s a milestone.

The Four-Eyed Journal Interview

I’ve just been interviewed by Jhay at Four-Eyed Journal. The interview was about being nominated for the “Philippine Blog Awards”:http://www.philippineblogawards.com.ph/. He started a series of interviews with the nominees of the awards. It was an pleasure doing the interview Jhay.

Read the interview “here”:http://jrocas.com.ph/archives/philippine-blog-awards-finalist-spotlight-fight-pompe/.

Congratulations Charlie and Crumpler

I found myself at the Bonifacion High Street complex last thursday night. Why? Well it just so happens that my friend Charlie was having the formal launch of his newest store. What store is that? Crumpler!

!http://www.fightpompe.com/images/34.jpg (Crumpler Store Facade)!

Charlie has been selling Crumpler bags through his Digital Walker chain of stores. Now, he opened the very first Crumpler Boutique store in Bonifacion High Street. Crumpler is an Australian bag brand. They make stylish, rugged and durable bags for your books, computers, photography equipment and other digital gadgets.

!http://www.fightpompe.com/images/33.jpg (Crumpler Launch Party)!

The launch was awesome to say the least. It was held at the open area in front of the store. The theme of the launch was a street party. Food and beer was flowing. They served fish and squid balls, Burgers, Hotdogs, Fries and Krispy Kreme. How cool is that?

Hosting the bash was Gabe Mercado and Patti Laurel. Gabe is really funny and Patti, well… she’s hot. Hahahaha. I know Gabe personally and he’s one of the guys behind GeekChrous. He’s one of the most hilarious persons I know. You’ll always be entertained with him around.

It drizzled a little bit that night which prompted me to move to a covered area far from the actual party. I watched from afar not wanting to get wet. Jason and his friend stayed with us and we chatted a bit while watching the program from the distance.

We also saw some other people from PhilMUG there. We said hello to them and talked for awhile. However having some other things to do both Jason and I had to leave at 8:30 p.m.

!http://www.fightpompe.com/images/35.jpg (With Charlie and Anna)!

To Charlie and company, thanks for inviting to the launch. It was a great bash. Congratulations on launching the Crumpler store. I’m sure that it will be a success. Crumpler bags are great products but more than that, Charlie’s a great guy, kind and generous and he certainly deserves all the success. More power Charlie!

Thoughts On Cashing In On Orphan Drugs

Aaron Smith of CNN Money wrote “an article titled Cashing In On Orphans”:http://money.cnn.com/2007/03/13/news/companies/genzyme/index.htm last March 16, 2007 about how companies like Genzyme are cashing in on orphan drugs. I read the article and it was interesting to say the least. I have mixed feelings about it. Let me tell you why.

I’m happy in the sense that Genzyme, the company that makes Myozyme, Cerezyme and Fabryzyme, is able to turn a profit with these drugs. It’s a decent profit I might add. The article mentions that it’s standard for drug companies to put a 30% profit on their medicines. I’m not sure how much profit Genzyme has placed on these drugs but let’s just say it’s the standard. Why am I happy about it? Well it just proves that you can make money treating rare disorders. While I would rather have a world wherein people make drugs to treat patients not for profit but for the simple reason that it helps other people, we all know that our world isn’t like that. So I’d like the next best thing, a company that sees the need to help people with rare disorders but can still find a way to make money for their share holders. At least companies like Genzyme cared enough to find a treatment for people who suffer from rare disorders like myself. I’m happy because I’m alive as a result of Genzyme’s efforts.

Dann Quinn, Genzyme’s spokesman has this to say.

Genzyme spokesman Dan Quinn says that anyone who needs Cerezyme gets the drug, even if he or she is uninsured.

“We work to try to find [insurance] coverage for patients,” said Quinn. “But for patients who are not able to get insurance coverage, we do provide treatment free of charge.”

Quinn said that policy applies to all three of the orphan drugs.

I can attest to this. While Genzyme’s primary method of making money from the drugs is to find insurance companies, government or other organizations to pay for the drugs, when it’s really not possible they give the medicine for free. They’re trying to make sure that no patient will be refused treatment because of capacity to pay. In this respect, Genzyme is better than other drug companies. Some companies will turn away patients because they can’t afford to pay. That’s one of the biggest tragedies of this world, at least in my book. I’ve thought about it a lot and if I were in a drug maker, I probably wouldn’t be able to live with myself knowing that it’s within my powers to save a persons life but I didn’t because he couldn’t pay for my medicine. That just well… sucks.

Aaron Reames, analyst for A.G. Edwards, said that Genzyme’s practice of providing the drug for everyone in need is one reason why its orphans cost so much.

Sure Genzyme’s practice of providing treatment for all might be why the drug is priced so high. So?!? People are alive aren’t they? Isn’t that justification enough. Those who can, help those who can’t.

I can’t even believe we’re discussing the high costs of life saving medicines and in a way complain why they’re so high or look bad at a company for pricing a drug so high and yet it’s ok for other companies to charge thousands of dollars for a handbag, shoe or a dress. We don’t complain about companies who make million dollar jewelry to sell to a few. Now that’s making a ton of money out of rocks and minerals who serve no real purpose but to beautify someone. I can’t understand that.

Our society is prepared to pay millions for rare stones but not prepared to pay the same amount to save rare people. Where’s the justice in that?

Genzyme and other companies like it make money on orphan drugs. Heck they make a lot of money on it but at least they’re producing something that makes a difference. They’re helping people who otherwise would be left to suffer, worse left to die. I’m willing to live with that fact.

I’m A Finalist! Hooray!!!

!http://www.fightpompe.com/images/32.png (The 2007 Philippine Blog Awards)!

I knew a few weeks back that I got nominated to the 2007 Philippine Blog Awards but there were so many nominees that I really didn’t think I’d be a finalist. In fact I almost forgot about the whole thing till Josh messaged me today and congratulated me for making it as a finalist in the Personal Blog category. I was stunned.

So off I went to check out the Philippine Blog Awards web site and lo’ and behold I did make it to the finals. Thank you very much.

It’s certainly an honor to be included as a nominee and a finalist. I’d be lying if I said I don’t want to win, apart of me does but I’m just happy I made it as a finalist. I’m really not expecting to bag the award. Not with other notable blogs in the same category.

Congratulations to “Bikoy.net”:http://bikoy.net/, “Jessica Rules The Universe”:http://www.jessicarulestheuniverse.com/, “Last Leaf Design Chronicles”:http://www.lastleaf.org/ and “Misteryosa”:http://www.misteryosa.com/ for making it to the finals as well. Your blogs are terrific and I wouldn’t mind losing to anyone of you.

To the other finalists of the other categories, congratulations as well. See you on the 31st!

300

!http://www.fightpompe.com/images/31.jpg (A scene from the movie 300)!

“Give them nothing but take from them everything”. Just one of the many memorable lines that Leonidas said, nay shouted in the movie 300.

The last movie I saw at the Theater Mall was “Superman Returns” that was almost 6 months ago I think. Maybe more. Today I got to watch 300. I saw it with my family. The ironic thing is that it’s not really a family movie, but seeing that in my family the men out number a single woman, there are times that the men will win. This is one of those days that we got to choose the movie.

I’ve been wanting to see this movie. It’s inspired by a graphic novel by Frank Miller. I’m not really a Miller fan. This is the first Miller movie I’ve seen. However when I saw the trailer, I knew I had to watch it. The way the movie was done was fantastic. It looked like it came straight out of a graphic novel. I later found out that it did. It’s amazing how some scenes really seemed like it was peeled of the graphic novel.

The graphic novel 300 is based on the historical “Battle of Thermopylae” wherein 300 Spartans with the aide of other Greeks held of the invading Persian army which was estimated in the millions. In the end the 300 Spartans, Leonidas included died. But their sacrifice paved the way for Greece to unite and eventually win the war against the Persians.

It’s not really an “Oscar Award” type of movie. More of mindless entertainment. The movie’s plot is simple and straight forward. There are very little twists and turns and for the most part it is predictable. The action scenes and the CGI make up for it though. It’s what some movies really should be. Mindless entertainment. For the two or more hours that you’re seated in that movie house, you’re taken to another world. While there’s historical evidence to this event, the movie is really still fantasy. The real event I’m quite sure did not take place as how the movie portrayed it. Not 100 percent at least.

More than the movie, what I really loved was just the fact that it was a Sunday afternoon and I got to spend it with my family. The times we spend together out of the house are just too far and few in between. We’ve been too busy in our own worlds that even though we see each other everyday, we haven’t really spent time as a family.

I just wish that I was stronger so we could spend more time with each other. There are just days that I’m not up to it. Especially the past few weeks. It was good that today was a little better than the others.

Oh, and the funniest line from the movie was when the Persian emissary says to the Spartan called Dienekes “our arrows will blot out the sun”. The Spartan replies, “then we will fight in the shade”.

This Is What You Get With Perseverance and Some Myozyme

I was reading through my GSDnet emails when I came across an email from David Hamlin. In his email David is sharing the progress of his son Eric with Myozyme and a whole lot of exercise. He posted some videos on the “United Pompe Foundation”:http://www.unitedpompe.com web site. I checked it out and what I saw had me nearly in tears.

Awesome. That’s the word I’d use to describe David, Eric and the rest of the Hamlin family. It was through their collective effort and of course the people at Genzyme who brought us Myozyme that Eric is doing as well as he is right now.

Eric hasn’t been able to walk since 2001. He started with Enzyme Replacment Therapy April 2004. 11 months after progress was more evident. Now, Eric is taking his first steps with a walker. That rocks!!!

Pompe has slowly ravaged the bodies of people unlucky enough to get afflicted with it. Myozyme works but it does take time. This is evident with Eric’s case. It took awhile before significant progress was made. It took years to destroy the muscles, it will take years as well to repair it.

I guess the key to all of this is managing expectations. I understand that Myozyme is not a miracle drug. I understand that each patient will differ in the progress he/she makes. I also understand that it will take patience, hardwork and determination. I should learn a thing or two from Eric.

Go watch the videos “here”:http://www.unitedpompe.com/VIDEOS.cfm.

27 Days And Counting…

It’s been 27 days since my last infusion. So it’s been awhile since I’ve seen the inside of a hospital room. In a way that’s a good thing. I’ve been going to the hospital twice a month for the past year and 2 months that a break is ok as well.

I’m still unsure when I will resume the infusions as I’ve yet to receive word from my doctors about when we can start. While the break from the infusion is unfortunate since I was really getting into the groove of starting to exercise more, there are also positive aspects to it. Ok, maybe not that positive but hey, you always need to look at the bright side of things.

One of those things is that it’s been 27 days since I’ve gotten poked by a needle. That’s good. I think my veins are welcoming the time off.

Seriously, the break has made me think about the benefits of Myozyme and how they’ve affected my life. They say, you never really know the value of something till it’s gone. In this case I hope it’s only temporary.

I’ve actually felt the difference. After a year of Myozyme, I can tell the difference already. It seems that I have less energy now to do things. When I was on Myozyme, I didn’t really feel tired during the course of my ordinary day. Now towards the end of the day I feel sleepy. In fact just this afternoon I’ve had to take a quick nap around 6 p.m. because I felt tired. I really didn’t do much, seeing that I woke up late this morning as well.

In terms of exercising I’m finding it difficult now to do so. I’m finding it difficult to exert myself the same way as I did when I was on Myozyme. I feel my arms are like lead. Although this gets better as I push above the 10 min level on my hand bike. They say this is the second wind, when the body shifts from a glucose/sugar based energy source and shifts to burning fat and protein. I’m no scientist so I really wouldn’t know.

The good thing though is that so far there aren’t really any adverse reactions to not being on Myozyme. I’ve been worried that there will be some since my body got used to having it the past year that taking it out will have some sort of reaction. I’m crossing my fingers it doesn’t

As I enter my 4th week of not having an infusion, I’m praying that everything will still continue to be ok. I’m also praying that we sort this out and that I can resume my infusions again at the soonest possible time.