juan day at a time
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/.
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!
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.
!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!
I’m on a break from regular infusions. Myozyme didn’t come on time and I’ve had to skip an infusion, maybe two or more. Still uncertain at this time.
So far it’s been ok. I’ve been feeling a bit sluggish but I’m not sure if it’s because of skipping the infusion or it’s due to the fact that I’ve been feeling bad. The other day I thought I was going to get sick. I felt a cold coming. I drank a lot of juice and slept early. Seems to have worked but I’m still feeling sluggish. I still have a headache.
It’s been four days since I was supposed to have my infusion. I’ve asked my friend who also takes Myozyme. She said that the longest she’s gone without it was 4 weeks and things seemed to be ok. I’m not expecting any problems other than probably the lack of energy. The only thing I feel sad about is the progress I’ve been making. I’m excited to keep adding to it but it seems like it will take a back seat for the mean time.
What I feel good about though is that I know people are trying their best to get it here as quickly as possible. Sometimes things like this just happen.
Your prayers will be appreciated. God might hear them and decide to speed things up.
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/.
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.
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.
_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!
I’ve had a mixed week. Good and bad. I guess I’d better lead with the bad so that I can finish on a good note.
*The bad*
h3. Myozyme not arriving on time
I followed up with my doctors this week if we were pushing through with the infusion on tuesday, they reported that the Myozyme has been shipped but they don’t think it will arrive’and clear customs on time.
It’s ok. My infusions will most likely be setback a week or so. Still at least it will come.
h3. My friend’s son died
A good friend’s son of mine died. “David Zion Felipe”:http://www.nonofelipe.com/blog/2006/11/15/david-zion-l-felipe-november-12-2006/ died in his mother’s womb one month short of being delivered into this world. It’s a alwaya a tradgedy to lose a child.
My friends Nono and Tuna are going through a tough time and I sincerely pray that they get over the loss of their child as qucikly as they can. Not to forget their son but to move on with their lives. May the Lord not allow them to dwell upon this loss. Sometimes we can’t understand why things like this happen. We can only trust that there’s a reason for this.
h3. Our story didn’t win
Awhile back I “blogged”:http://www.fightpompe.com/article/108/the-countdown-begins about a contest that my friend and I entered. We submitted a story that we worked on together. Well I’m sad to say we didn’t win. Not even an honorable mention. It’s ok. The only reason I’m sad we didn’t win is that because the winner gets published. However somehow, someway we’ll get this book published.
h3. My Powerbook’s charger is busted
My charger just suddenly acted up last Friday. It didn’t want to charge my Powerbook. It only started to charge when you moved the wire. Then after awhile my aide noticed that the charger was really really hot and the rubber that connected the wire to the charger melted already.
I called my dealer to check if it can be replaced under warranty. I also asked if they had chargers in stock. Even if they could replace it under warranty it would take sometime. Time that I didn’t have. A new charger would set me back Php 8,500 or roughly $ 170. That’s a lot..
Luckily I was able to borrow a spare charger from a friend. I’ll just have to wait to know if Apple will replace my charger.
*On to the good things…*
h3. Myozyme is coming
While I wrote above that it’s bad that Myozyme won’t make it on time for the scheduled infusion date, it’s still good that it was shipped and that it will eventually get here. That’s still great news. I’m truly grateful about that.
h3. A business transaction pushed through
I was able to close a business transaction this week. While it was only half of what I was hoping for, half is still better than none. God I pray for more opportunities like this. I really need to start making more so I can save for the future.
h3. The Pac Man Won
Manny “The Pac Man” Pacquiao won over Erik “El Terrible” Morales in their third and final match. Much buzz was going around prior to the fight. People said that this will be a tough bout for both. Manny and Erik were in great condition and the fight was expected to be an epic one.
After all is said and done, Manny demolished Erik in 3 rounds. Erik fought valiantly. He’s a true warrior. However Erik was just outboxed this time. Manny was the better fighter today. He was quicker, stronger and better prepared.
This deserves an entire post all to itself which I’ll do tom.
*All things considered*
As with most things in life, good and bad are all mixed in together. You can’t have good all the time. All things considered the past week was ok.