Wow.. I can’t believe it’s been this long since I last blogged here. According to the last entry that as of today (April 15, 2008) it’s been 99 days since my last post. That’s a long time.
Just a quick update. Things are ok. They’re not perfect. I’m going to go through a major change in my life. Honestly I’m quite scared as to how it will turn out. I’m hoping it turns out well.
My infusions have been going well. No untoward incidents which is really great. There haven’t been major improvements but at least it’s not getting worse.
I’m sorry for not being writing. Not that anyone cares. I think only 3 people read this blog and my mom is one of them. So that’s two other people not related to me.
I’m going to start blogging again. So go out and tell the world… or not.
See you again soon!
The past few days were ones that I’ve been dreading for quite some time. Ever since I’ve become dependent on my BiPap machine for my ventilatory needs, I’ve been worried when a day would come that It would break down. I’d been in serious trouble when that happens. It did…
However it’s not as grave as it sounds. Well sort of. Over the years I’ve been lucky enough that over the years I’ve been able to build up my equipment. From the original BiPap S/T that my family bought 10 years ago, I’ve accumulated a total of 4 machines over the 10 years. Sounds a lot right? It is and I’m blessed to have them. But there are some problems.
I own a pair of BiPap S/T’s and a pair of BiPap Synchrony S/T’s. The Synchrony’s are the newer models. I got the first Synchrony about 3 years ago and the newest one around 2 years ago. Both were courtesy of two very very kind aunts and uncles in the United States. They knew that my equipment was getting old and so they bought me news ones. The other BiPap S/T was also given. This time through my good friend Maryze. She had known years back that I didn’t have a backup machine. So she asked her home care provider if they had one. The home care provider had a used but in good condition just sitting on the shelves. They gave it for free. Talk about lucky huh.
Anyway, as great as four machines sound, my problem lies in the fact that the 2 BiPap S/T’s are very old already that it’s not working very well already. The oldest one I can just use when I’m awake. I can’t use it while sleeping since it’s not giving the adequate pressure I need while asleep. Same goes for the slightly newer one. I can’t seem to sleep with it.
As for the two Synchrony’s for some reason again, I can only sleep with one of them. The one I use to sleep on a regular basis. I can’t seem to get to sleep with the other one. They’re both in the same settings and they both are identical models. Go figure. My intuition tells me that the software algorithim of the machine I use for sleep has got my breathing pattern right and the other one I use while I’m awake and seated is suited for seated ventilation. Thus when I lie down and try to sleep it’s not in sync. I’m not sure if this observation is correct. But that’s the explanation I can think of.
So with my luck, it’s the machine that i use for sleep that breaks down. Well 2 nights ago, I noticed I’ve been having trouble sleeping. I’d wake up in intervals. Gasping for breath. The machine is running and I can hear the motor but when I try to breathe it doesn’t seem to give me the pressure I need. I thought it was just me. So I tried switching machines. It was better I didn’t feel the gasping but I couldn’t sleep still.
For 2 days now, I’ve had a total of I think 3 to 4 hours of sleep put together. The rest is somewhere between awake and sleep. It’s been a rough two nights.
Again, with the luck that I’ve been having, It had to get worse on the weekend. The service center was closed. I had to make a lot of phone calls to see where and how I can get it looked at.
We finally ended up in the sleep center near our house. Luckily the technician who also happens to be the GM was there. He looked at my machine and he opened it up to check it. The verdict? The machine somehow got so hot that the coating of a pair of wires controlling the valve melted. The wires would touch sometimes and cause the valve not to open. Hence the shortness of breath sensation I was getting with the machine.
Long story short. We spent a good 6 hours in the sleep center. We also almost didn’t get the machine to work but the technician found a remedy to it. Parts for the machine isn’t available readily here apparently because very few Synchrony’s were sold here. I was really really worried by that time.
Buying a new one crossed my mind. The dealer had one here in stock I think. But the 200 plus thousand ($4000) pricetag stopped me. I didn’t have that much money to burn. I just hoped he could fix it. The prospect of not sleeping another night was terrible. My eyes hurt, my head is spinning and I really want to sleep. But not enough to not write this.
It’s been a tough day today. Please pray for me if you can. The search to get the replacement part starts tom. But oh no! it’s Sunday no work. Plus elections on Monday, no work again. Drats! Pray that the remedy for the machine holds up indefintely. I’ll also look into getting a new one. The cheapest I found was on the internet at cpap.com. It was $3,000…. Now to look for the money.
I’m sorry for this post about local politics. I just had to say something about it. I’m also sorry because this is my first post after being absent for awhile. But I just had to say it.
First things first, I don’t know Cesar Montano personally. I also don’t have anything against him as a person. That being said, here’s why I won’t be voting for him this coming elections.
I was watching or as of this writing still watching a show on GMA 7 wherein they have as guests candidates for senator. There’s a part of this show wherein the candidates will choose from a random set of questions and answer it in the span of 1 minute.
Cesar Montano picked a question given by another candidate. It said something to this effect, “How will you ensure that the coming elections would be a clean and honest election?”. He started his answer by saying we should all pray and then went on to ramble about things totally unrelated to the question. When the time ran out he didn’t answer the question convincingly.
If you’re running for a position such as a senator and your answer to a question like that is “Let’s all pray”, maybe we should. We should start praying that you don’t win.
I’m believe in God and in the power of prayers. I believe both are very powerful but as a senator you can’t rely on just prayers and leave it at that. You need to do your part.
I’m just not convinced that Cesar Montano has what it takes to become an effective senator. He’s a good actor and probably a good person as well. He should stick to doing what he does best.
Should he still want to pursue becoming a senator, then educate yourself better on it. Take more classes related to legislation and such. Don’t just jump in because people wanted you to run.
Ironically another actor said this about becoming an elected official. If I’m not mistaken it was Dolphy, the Philippine’s Comedy King, who said something like “It’s easy for me to run and win in the elections, but what do I do after?”. Now he’s smart. He knows becoming an elected official is not his thing. He didn’t study or prepare for it. Although he can win, it’s not enough. He knows he as well as the country is much better off if he kept doing what he did and that’s making us laugh.
It’s been a rough past couple of weeks. My cough has been really bothering me.
The past few days I had a legitimate cold. Legitimate being that it was an actual virus. My other coughs are mostly irritations of my nasal passages caused by the Bi-Pap machine which pauses mucus down my airways. When it gets through the airways, I really find it difficult to cough it out. Often times this is cured by just simply lying down and waiting for it to be pushed back up. I’ve developed a system wherein I just lay down on a flat surface, wait awhile, turn to my side and usually after that I am able to cough it out. But there are times wherein it gets really bad. Those are the times that make me think about life and what it really means…
We were on our back from our annual Holy Week break. While driving back from Cavite towards Manila, I suddenly developed cough caused by some secretions that got through my airways. I was riding in my dad’s car and the passenger seat couldn’t recline all the way back. At first I thought it was going to be ok, but it got worse. I was starting to cough more violently. I asked him if I could transfer to the van. We had brought 2 cars because of the amount of stuff we brought on the trip.
I wanted to transfer to the van because I could lay down flat on the back seat. The problem was, they couldn’t get my Bi-Pap machine working on the van. Time was running out. My cough was getting worse by the minute. I could fill the liquid filling up my air passages.
Luckily, we stopped just in front of a provincial hospital. I asked my dad if they could just take me into the emergency room of the hospital. They have an electrical outlet there and a bed where I can lay down. We made a dash for the E.R.
I was able to lay down on one of the beds. The coughing eased a bit but by this time too much liquid had built up inside my airways and lungs that I was still coughing even after 30 mins. I was still having trouble breathing.
At this particular moment, all I could really think of was that I didn’t want to die in that provincial hospital. Ok, I might have been over reacting. There was a good chance I would not die there. However, sometimes when you’re gasping for air and coughing violently and not being able to do anything about it, thoughts like this do pass through your mind.
Long story short, after about an hour, I just decided to have the doctor suction the fluid out. Not the most pleasant experience but it did get the fluid out quickly and we were able to continue our way back home.
I’ve been having these respiratory problems the past few weeks. It’s been tough. It’s made me think about mortality even more. That and all the experiences I’ve had the past year, plus the fact that I’m turning 30 this year made me really rethink my life.
We can’t really be sure how much time we have left in this world, I guess we just need to make the most of the time we have. It’s easier said than done. Sometimes, other things take over that prevent us from doing things that we want to do.
Life is hard. Moreso for people like me who suffer from Pompe or other diseases but we just need to bite the bullet and get on with our lives. Appreciate the things we have.
In my case, while life hard now and the future is uncertain, I’m happy I have my family here with me. I see them everyday, I get to spend time with them. Sometimes we get on each others nerves but at the end of the day, we’re still family and we love each other dearly. I’m thankful for my friends. Even if I don’t see them everyday I’m still thankful for their being in my life.
I’ve often thought what I’d do when I get strong enough and able to move my arms, body and legs better, there’s one thing that always comes to my mind, when I’m able to, I’d like to give all the people that matter in my life a warm hug, a kiss on the cheek and a simple thank you for being in my life and making it better.
We’re going on our annual Holy Week break. My family usually goes to a place near the beach where my mom’s side of the family usually get together.
It’s been really hot and humid here. I also have been irritated with my hair so with all those things combined, I decided to just cut it all off. So here’s my summer look. Goatee included.
I was trying to keep myself from laughing while taking this picture in front of the web cam. So if I look like a dork, well…
Maybe it’s temporary insanity. The goatee will probably get shaved after the break. As for the hair, it’s not the first time I cut it off, I’ll probably keep it till summer is over. Maybe longer is people like it. Hahahaha.
16 episodes later, I’m definitely hooked on the ABC drama Brothers and Sisters 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.
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.
